We are in the midst of the busy holiday season, but I hope you will take a few minutes to read my blog. I must confess that Christmas is not my favorite holiday. I don't like all the commercialism that surrounds it, and I can't but help think of all the people who will be lonely at Christmas. This Christmas Bob and I are in a much better place. Last Christmas I left him in the car in the grocery store parking lot while I ran in to get 2 items. He had never gotten out of the car before, but there is always a first time for everything. When I came out, he was nowhere to be found. A sweet lady saw me looking frantically around the parking lot and asked if I was looking for Bob. She had seen him wandering around the parking lot and had taken him into the store. I thanked her profusely and ran into the store, but I couldn't find him there either. Then paramedics arrived and I just had a hunch it could be something to do with Bob....The store management had called them, and he was fine, had not fallen, but of course he wasn't making sense to them, but he was certainly enjoying all the attention! This year he is not belligerent and angry like he was last year, so this will be a much better Christmas.
Here are a few tips that may help you survive the holidays:
1. Pay it forward. Three times in the last month someone has paid it forward to me. I was able to reciprocate and pay it forward to someone else. Strange how it makes your day, whether you are on the receiving or the giving end.
2. Exercise. If you can do just half an hour a day it will help. I have given this tip before that our yoga instructor ends our sessions with during the Advent season. And it will help also if you are worried and you can't sleep. Lie on your back, and relax totally. On the inhale say a phrase something like "Peace of Christ" and on the exhale say "rest in me". Or say whatever you choose.
Or you can do Tai Chi. Google "taichi18.com" and then click on the site "TaiChi, Qigong and Feng Shui Institute: Home. You have to scroll down a little to get to the video. If you are not in shape, this is for you!
3. Enjoy the food, keeping it as healthy as possible, but splurge a little. When my dad died, my mom's comfort food was marshmallows, and she ate bags of them. I think mine would be spaghetti, or maybe chocolate! For Bob it is German Chocolate cake. I have made him one for his birthday every year since we have been married, except when we are traveling. I made one recently and took him a piece. I asked him if he wanted it (silly question!). He doesn't always answer questions with answers that make sense, but this time he said YES! Then he asked "Did you make it?"
4. Enjoy the music, even if you have been hearing it since October. I have enjoyed several concerts already this season, and it lifts your spirits. Also I have been playing Christmas music, secular and sacred on the piano at The Piper where Bob is, and the residents that don't pay attention any other time have perked up their ears, tap their toes, and sing along.
5. Stay healthy. I went to a naturopathic doctor recently that is hired by Shawnee Mission Medical Center, or Shawnee Mission Health as it is called now, with all the satellites. She had spoken at one of our retired nurses luncheons and I was very impressed with her. I wanted her to review the supplements I am taking and make suggestions. She recommended to keep your immunity up during this cold and flu season to take elderberry concentrate. She said there is no better antioxidant. Take a teaspoon a day, and increase the dose greatly if you start to have cold symptoms. If you live here locally, the one she recommends is Elderberry concentrate made by Wyldewood Cellars in Peck, KS and it is available at Natural Grocers. It comes in what looks like a wine bottle. I promise it isn't elderberry wine, but a nip or two of that might not be a bad thing either! If you don't have access to that, any brand of elderberry concentrate would be fine, I am sure. I don't know why insurance doesn't pay for preventative and homeopathic medicine, but they don't. But see, I have given you some free advice!
6. Decorate--at least a little, so you don't have to face taking it all down in January. Mine is scaled way down this year because of two resident cats named Smoky and Sadie!
7. Stay connected as much as possible with friends and family, and cherish your loved ones. You don't know how much longer you will have them. I have dear friends who have lost their spouses this year and this will be a blue Christmas for them, I am sure. Bob's brother's wife died from complications of a routine knee surgery (if there is such a thing). I will be spending winter evenings of January and February making pillows for them from their favorite husband's shirts, for maybe a small consolation. I have had people tell me this year that they received phone calls from Bob after he was diagnosed, and it seemed like he just wanted to talk. I have no idea how he got their phone numbers, but one high school classmate knew it was a blast from the past when he called her at work and asked for "Sharon Rose". She had not used her middle name after she got married! I did not know he made those phone calls. Was he calling maybe to say goodbye?
I think as you grow older your Christmas list gets shorter because the things you want can't be bought--(author unknown). For all my friends and family, and also as granddaughter Libby prays for all the animals, this Christmas I wish for you joy, love, and health, but most of all I wish for you to have peace.
Love to you all this Christmas,
Betty
Saturday, December 9, 2017
Saturday, November 11, 2017
I have skipped a month in my blogging. It is partly due to the fact that I have been so busy, but also, not that much has changed with Bob.
I have just returned from a drive to TN where I saw the three grandchildren there, and then saw grandson Jaden from St. Louis on the way back. It is so wonderful to be able to travel and know that Bob is content and well cared for. This time when I returned he greeted me with a big hug, something that he has not done in a long time. Thank you to friend Harry Janke who checked on him while I was gone. He is happy just to sit and hold Harry's hand, unspoken communication.
I have written before about some guidelines in talking to someone with dementia, but these are a little different. It is often difficult to hold a conversation and maybe these tips will help.
1. Approach from the front so as not to startle. I specifically saw this with a man that had been a security guard, and became understandably combative, when he was surprised when being approached from behind.
2. Converse at eye level. This also works with children--they are so much more receptive when you kneel down in front of them instead of tower over them.
3. Never argue or disagree, instead join their reality.
4. Keep it simple. Stick to short specific statements. I have learned not to use the word "and."
5. Reminisce--in general, older memories are easier to recall than recent ones. It is very hard for me not to say "remember this person?" or "remember when?" It just causes stress as they strive to remember something that is maybe there, but they can't put it into words.
6. If an upset occurs, acknowledge their feeling and redirect with a change of scenery or a new topic. We used to remind each other when we were watching grandkids--DIVERT! DIVERT! (We were not that astute when OUR kids were growing up!)
7. Don't be offended if you are not remembered in the moment. It's not you, it is the dementia.
I would like to relate a story that only those of you who know our precious pastor can appreciate. He had messaged me and asked when he could go with me to see Bob. We set up a time, and went out to The Piper. Another resident wandered in and joined the conversation. Bob and this other resident have struck up a friendship and it is quite entertaining listening to them converse. It makes no sense from either side, but it is satisfying to both of them, and they seem to enjoy it. Bill asked our pastor, Doug Elsey what kind of work he did. Pastor Elsey (who is from England) responded in his fine British accent that he was a "poster". Bill seemed quite confused. He said "I have never heard of a poster before. Is it like an imposter?!" Dear Pastor Elsey took it all in stride, and patiently explained more about his ministry.
This evening we had another wonderful visit with a few employees that Bob had been buddies with for years at the hospital. His secretary, Judie Royer was already at the hospital when he came in 1974, but Janet Jordan and Fred DeSieghardt were hired just a couple of years later. Fred and Bob had a special bond, as both have/have had/ cerebral palsy. Fred has now worked at the hospital for 40 years and is 64 years old. That seems unbelievable to me! Fred now has grey hair, but he is the same sincere person he always has been and he was so excited to see Bob. Fred sends Bob a "thinking of you" card every month. Bob seems to be more cognizant recently, and it looked like he obviously recognized everyone, even if he couldn't say their names. I took a photo album, and of course Fred remembered everyone in the pictures!
As the Thanksgiving season approaches, I am so thankful I still have Bob. When he went on hospice in May, I was sure he wouldn't be here for the holidays. But things have changed so much for the better, that now I can go see him, and just sit there with him and read a book and enjoy his company without saying a word. I don't know how long this phase will last, but I am grateful for the little things, and cherish them. I would like for things to be how they used to be, but....
We only THINK we might write the story different because we don't know the same things the Storyteller knows.
YOUR kingdom come--not OUR kingdom.
THY will be done--not OURS
YOUR story be written--not OUR way, but YOUR way.
Enjoy your holidays with your families. I am going to get on my soap box for a minute. PLEASE put down your cell phones. Make the kids put theirs down, especially at mealtime. Have a real family conversation. Be present in the moment. Communicate. You will be blessed by it.
Betty
I have just returned from a drive to TN where I saw the three grandchildren there, and then saw grandson Jaden from St. Louis on the way back. It is so wonderful to be able to travel and know that Bob is content and well cared for. This time when I returned he greeted me with a big hug, something that he has not done in a long time. Thank you to friend Harry Janke who checked on him while I was gone. He is happy just to sit and hold Harry's hand, unspoken communication.
I have written before about some guidelines in talking to someone with dementia, but these are a little different. It is often difficult to hold a conversation and maybe these tips will help.
1. Approach from the front so as not to startle. I specifically saw this with a man that had been a security guard, and became understandably combative, when he was surprised when being approached from behind.
2. Converse at eye level. This also works with children--they are so much more receptive when you kneel down in front of them instead of tower over them.
3. Never argue or disagree, instead join their reality.
4. Keep it simple. Stick to short specific statements. I have learned not to use the word "and."
5. Reminisce--in general, older memories are easier to recall than recent ones. It is very hard for me not to say "remember this person?" or "remember when?" It just causes stress as they strive to remember something that is maybe there, but they can't put it into words.
6. If an upset occurs, acknowledge their feeling and redirect with a change of scenery or a new topic. We used to remind each other when we were watching grandkids--DIVERT! DIVERT! (We were not that astute when OUR kids were growing up!)
7. Don't be offended if you are not remembered in the moment. It's not you, it is the dementia.
I would like to relate a story that only those of you who know our precious pastor can appreciate. He had messaged me and asked when he could go with me to see Bob. We set up a time, and went out to The Piper. Another resident wandered in and joined the conversation. Bob and this other resident have struck up a friendship and it is quite entertaining listening to them converse. It makes no sense from either side, but it is satisfying to both of them, and they seem to enjoy it. Bill asked our pastor, Doug Elsey what kind of work he did. Pastor Elsey (who is from England) responded in his fine British accent that he was a "poster". Bill seemed quite confused. He said "I have never heard of a poster before. Is it like an imposter?!" Dear Pastor Elsey took it all in stride, and patiently explained more about his ministry.
This evening we had another wonderful visit with a few employees that Bob had been buddies with for years at the hospital. His secretary, Judie Royer was already at the hospital when he came in 1974, but Janet Jordan and Fred DeSieghardt were hired just a couple of years later. Fred and Bob had a special bond, as both have/have had/ cerebral palsy. Fred has now worked at the hospital for 40 years and is 64 years old. That seems unbelievable to me! Fred now has grey hair, but he is the same sincere person he always has been and he was so excited to see Bob. Fred sends Bob a "thinking of you" card every month. Bob seems to be more cognizant recently, and it looked like he obviously recognized everyone, even if he couldn't say their names. I took a photo album, and of course Fred remembered everyone in the pictures!
As the Thanksgiving season approaches, I am so thankful I still have Bob. When he went on hospice in May, I was sure he wouldn't be here for the holidays. But things have changed so much for the better, that now I can go see him, and just sit there with him and read a book and enjoy his company without saying a word. I don't know how long this phase will last, but I am grateful for the little things, and cherish them. I would like for things to be how they used to be, but....
We only THINK we might write the story different because we don't know the same things the Storyteller knows.
YOUR kingdom come--not OUR kingdom.
THY will be done--not OURS
YOUR story be written--not OUR way, but YOUR way.
Enjoy your holidays with your families. I am going to get on my soap box for a minute. PLEASE put down your cell phones. Make the kids put theirs down, especially at mealtime. Have a real family conversation. Be present in the moment. Communicate. You will be blessed by it.
Betty
Sunday, August 20, 2017
It has been a busy summer. Right after my last blog, our son Ron and the Chattanooga grandkids came for a visit. We went out to The Piper to see Pop Pop and Bob said right away "Well hello Ron, what are you doing here?" It has been 6 years since Bob has called Ron by name. He has called him "Harrel" all the time. Harrel is Bob's brother, and since Ron and Harrel favor each other very much, it was understandable. But this came out of the blue! Ron said "Where did THAT come from?" From the deep recesses evidently! He also called 7 year old Libby by name, and I really expected that, as they were best buddies. He also seemed to recognize 13 year old Emme and 15 year old Nate, but didn't call them by name. Libby stayed with me for the rest of the summer, and every time we went to see Bob, he called her by name and was excited to see her. The other residents enjoyed it when she came as well, and she played her piano recital songs for them. She is back home in school now, and the residents still ask me where she is, and when she will come play for them again!
Bob is much better physically and is able to feed himself again. He is also gaining strength, and can stand to get out of the wheelchair. One of the other family members told me he saw Bob get out of his wheelchair and walk to another chair. The staff was racing after him, afraid he would fall. That is a concern of mine as well. They cannot be restrained by a belt in the wheelchair under any circumstances. I totally understand the reasoning and regulations behind it, but it seems like it is a safety measure to me. So when I leave I put him in front of the dinner table, and put a glass of water there, and that complies with the rules! We used to give them washcloths to fold on a tray table attached to the wheelchair in the hospital, and that is OK as well. Occupational therapy!
He is also more engaged in conversation, though most of it doesn't make sense. Except the other day he asked how much I was paying a month. He went on to say that however much it was, it was too much because "the doctors never come around to see me!" Dear Bob and his money management!
He always did a great job of it, and read and thought a lot about the subject.
A couple of evenings ago was Bob's "gift of the day" compliments of Crossroads Hospice. They let each client choose an outing they will enjoy. They asked what Bob would enjoy, and I mentioned a Royals baseball game, but I said the logistics of doing that were too much. Then I remembered that the Kansas City T-Bones (a minor league team) have a stadium almost across the street from the Piper. They arranged a van to pick him up and take him back, and 2 of the workers from Crossroads Hospice accompanied us. It was a beautiful evening, and so relaxing. I think I enjoyed it as much as an of the hundreds of games we have been to, just in a different way. Bob obviously enjoyed it as well. When the national anthem was sung, he grasped the rail in front of him, stood up out of the wheelchair, and belted out the words. He has a very good singing voice. They got the cutest video of him!
Since we are talking about grandchildren in this blog I will close with an essay that Jaden, daughter Valerie's 12 year old son, wrote for a school project in April of this year. (Used with permission)
This is an essay on how God has helped my family. I am doing this essay on my Grandpa.
My grandpa was smart, kind, and hard working, or so I've heard. He didn't go to college, and he started working as a janitor at Shawnee Mission Medical Center (actually director of laundry and housekeeping) and he worked his way up to the President's assistant. He also helped start a school and was a major leader in the Church.
Then about 10 years ago he got into a car accident and my Grandma started to suspect that he had Alzheimer's. It wasn't until I was about 8 years old that they had definite evidence that he had Alzheimer's. Even then it took until three years ago to get worse.
We are lucky that Alzheimer's came on slowly. Because if not I might not have been able to meet my Grandpa.
Now he is living in a home, which has been good. My Grandma visits him a lot. Now we know that he is cared for at all times.
I look forward to meeting him in Heaven. Then I can meet him as his real self. That's what I look forward to the most.
I can't wait to reunite with the real Bob again in heaven as well, Jaden. What a day that will be!
And I know others reading this blog have loved ones they are looking forward to seeing again there.
God be with you till we meet again,
Betty
Bob is much better physically and is able to feed himself again. He is also gaining strength, and can stand to get out of the wheelchair. One of the other family members told me he saw Bob get out of his wheelchair and walk to another chair. The staff was racing after him, afraid he would fall. That is a concern of mine as well. They cannot be restrained by a belt in the wheelchair under any circumstances. I totally understand the reasoning and regulations behind it, but it seems like it is a safety measure to me. So when I leave I put him in front of the dinner table, and put a glass of water there, and that complies with the rules! We used to give them washcloths to fold on a tray table attached to the wheelchair in the hospital, and that is OK as well. Occupational therapy!
He is also more engaged in conversation, though most of it doesn't make sense. Except the other day he asked how much I was paying a month. He went on to say that however much it was, it was too much because "the doctors never come around to see me!" Dear Bob and his money management!
He always did a great job of it, and read and thought a lot about the subject.
A couple of evenings ago was Bob's "gift of the day" compliments of Crossroads Hospice. They let each client choose an outing they will enjoy. They asked what Bob would enjoy, and I mentioned a Royals baseball game, but I said the logistics of doing that were too much. Then I remembered that the Kansas City T-Bones (a minor league team) have a stadium almost across the street from the Piper. They arranged a van to pick him up and take him back, and 2 of the workers from Crossroads Hospice accompanied us. It was a beautiful evening, and so relaxing. I think I enjoyed it as much as an of the hundreds of games we have been to, just in a different way. Bob obviously enjoyed it as well. When the national anthem was sung, he grasped the rail in front of him, stood up out of the wheelchair, and belted out the words. He has a very good singing voice. They got the cutest video of him!
Since we are talking about grandchildren in this blog I will close with an essay that Jaden, daughter Valerie's 12 year old son, wrote for a school project in April of this year. (Used with permission)
This is an essay on how God has helped my family. I am doing this essay on my Grandpa.
My grandpa was smart, kind, and hard working, or so I've heard. He didn't go to college, and he started working as a janitor at Shawnee Mission Medical Center (actually director of laundry and housekeeping) and he worked his way up to the President's assistant. He also helped start a school and was a major leader in the Church.
Then about 10 years ago he got into a car accident and my Grandma started to suspect that he had Alzheimer's. It wasn't until I was about 8 years old that they had definite evidence that he had Alzheimer's. Even then it took until three years ago to get worse.
We are lucky that Alzheimer's came on slowly. Because if not I might not have been able to meet my Grandpa.
Now he is living in a home, which has been good. My Grandma visits him a lot. Now we know that he is cared for at all times.
I look forward to meeting him in Heaven. Then I can meet him as his real self. That's what I look forward to the most.
I can't wait to reunite with the real Bob again in heaven as well, Jaden. What a day that will be!
And I know others reading this blog have loved ones they are looking forward to seeing again there.
God be with you till we meet again,
Betty
Saturday, June 24, 2017
I can choose to be a victim of the world, or an adventurer in search of treasure. Its all a question of how I view my life--Paulo Coelho
I am back from my adventure to Israel and Jordan. Every trip we would come back from, I would always say "That is the best trip yet!" But this one truly was. I have wanted to go there for so long. We had reservations to go there for our 50th anniversary, but then when I looked more carefully at the itinerary and the comments about how strenuous the trip was, I knew Bob could not do that. So God in His wisdom made me wait, and this trip with all the Biblical connections in spoken word and wonderful violin music (hymns) made the footsteps of Jesus come much more alive. So it was a spiritual journey, as well as a physical journey (rigorous at times with the heat). And the group was so compatible, and included from ages 7-80, with 8 teenagers that kept things lively. I only heard one "discouraging word" and that was from a teenager as we were climbing a steep hill. Her mother just told her to look at the 80 year olds that were doing it, and to get going! And God sent my roommate to me as well in a miraculous way. We were talking about my upcoming trip during our monthly retired nurse's luncheon, and she looked at me and said "You are going to Israel? When I responded in the affirmative, she said "I am going with you." I needed a roommate, and it couldn't have worked out better. We never felt afraid, except maybe a little uneasy when going through security coming home from Jordan. I was afraid I could get upset with the agents when they completely unpacked my carryon bag that was packed to the hilt! And they did it twice within 40 feet of each other. But we didn't get patted down as some had.
I didn't worry about Bob while I was gone. The extra care layer of hospice also worked out to "the good of those that love the Lord" and turned what could have been perceived as a negative experience into a positive one. The nurse would call our daughter Valerie with a report after she had seen Bob, and then Valerie would message me. We just had to keep aware of the time difference! When I got back he is very much better than when I left. He was having to be fed when I left, but now he is much more aware of his surroundings. Valerie and her family came for Father's Day weekend and we all went out together. He obviously knew who they were for the first time in a long time, and called me "his wife Betty." He couldn't say their names, but tried to carry on a conversation even though it didn't make sense. I don't know what to attribute that to. Before I left, hospice asked if they could give him a round of Cipro, an antibiotic. He had been tested at least twice for a urinary tract infection, and everything always came back he didn't have one. But they felt he might. I don't know if that is what made the difference. Wouldn't it be wonderful if Cipro is the cure for Alzheimer's?! I cannot say enough good about having hospice on board. The equipment is furnished, and also the incontinent supplies are paid for. The bed has a foam mattress that comes up on the sides (not the forbidden restraint of side rails) so he can't get out, and they lower the bed to the floor at night, in case he would get up, he wouldn't fall. He seems to be getting stronger as well, and tries to get out of the wheelchair. And the other evening when I went, he was happily eating an ice cream bar by himself.
I will end this post with something I have been wanting to address. Sometimes it seems that people avoid talking to a family member because they don't know what to say. I totally understand that. I have wondered recently if the phrase "I am sorry for your loss" has become a cliche. For me, "How's Bob?" is fine. I love to talk about him. But you can just say sincerely to someone "I am here for you and I care." Or just a hug will be welcomed! Valerie told me two that she liked. One was "I've been thinking about you. How are things with your dad?" Another one was "I am so sorry. Please know you are in my thoughts and prayers." Be warned that any of these may elicit a few tears, but that is OK too!
The Chattanooga grandchildren will be here in about an hour, and 7 year old Libby will be here for the rest of the summer until school starts, so I don't know how much blogging I will get done. I am anxious to see if Bob remembers them as well.
Have a great summer!
Betty
I am back from my adventure to Israel and Jordan. Every trip we would come back from, I would always say "That is the best trip yet!" But this one truly was. I have wanted to go there for so long. We had reservations to go there for our 50th anniversary, but then when I looked more carefully at the itinerary and the comments about how strenuous the trip was, I knew Bob could not do that. So God in His wisdom made me wait, and this trip with all the Biblical connections in spoken word and wonderful violin music (hymns) made the footsteps of Jesus come much more alive. So it was a spiritual journey, as well as a physical journey (rigorous at times with the heat). And the group was so compatible, and included from ages 7-80, with 8 teenagers that kept things lively. I only heard one "discouraging word" and that was from a teenager as we were climbing a steep hill. Her mother just told her to look at the 80 year olds that were doing it, and to get going! And God sent my roommate to me as well in a miraculous way. We were talking about my upcoming trip during our monthly retired nurse's luncheon, and she looked at me and said "You are going to Israel? When I responded in the affirmative, she said "I am going with you." I needed a roommate, and it couldn't have worked out better. We never felt afraid, except maybe a little uneasy when going through security coming home from Jordan. I was afraid I could get upset with the agents when they completely unpacked my carryon bag that was packed to the hilt! And they did it twice within 40 feet of each other. But we didn't get patted down as some had.
I didn't worry about Bob while I was gone. The extra care layer of hospice also worked out to "the good of those that love the Lord" and turned what could have been perceived as a negative experience into a positive one. The nurse would call our daughter Valerie with a report after she had seen Bob, and then Valerie would message me. We just had to keep aware of the time difference! When I got back he is very much better than when I left. He was having to be fed when I left, but now he is much more aware of his surroundings. Valerie and her family came for Father's Day weekend and we all went out together. He obviously knew who they were for the first time in a long time, and called me "his wife Betty." He couldn't say their names, but tried to carry on a conversation even though it didn't make sense. I don't know what to attribute that to. Before I left, hospice asked if they could give him a round of Cipro, an antibiotic. He had been tested at least twice for a urinary tract infection, and everything always came back he didn't have one. But they felt he might. I don't know if that is what made the difference. Wouldn't it be wonderful if Cipro is the cure for Alzheimer's?! I cannot say enough good about having hospice on board. The equipment is furnished, and also the incontinent supplies are paid for. The bed has a foam mattress that comes up on the sides (not the forbidden restraint of side rails) so he can't get out, and they lower the bed to the floor at night, in case he would get up, he wouldn't fall. He seems to be getting stronger as well, and tries to get out of the wheelchair. And the other evening when I went, he was happily eating an ice cream bar by himself.
I will end this post with something I have been wanting to address. Sometimes it seems that people avoid talking to a family member because they don't know what to say. I totally understand that. I have wondered recently if the phrase "I am sorry for your loss" has become a cliche. For me, "How's Bob?" is fine. I love to talk about him. But you can just say sincerely to someone "I am here for you and I care." Or just a hug will be welcomed! Valerie told me two that she liked. One was "I've been thinking about you. How are things with your dad?" Another one was "I am so sorry. Please know you are in my thoughts and prayers." Be warned that any of these may elicit a few tears, but that is OK too!
The Chattanooga grandchildren will be here in about an hour, and 7 year old Libby will be here for the rest of the summer until school starts, so I don't know how much blogging I will get done. I am anxious to see if Bob remembers them as well.
Have a great summer!
Betty
Friday, May 26, 2017
Writing this blog soon after the previous one, but some may still be wading in deep water, and there are a few more points I want to add to help you avoid the sinkholes. Also, when I return from Israel, I will have 7 year old granddaughter Libby for the rest of the summer, so I may have trouble organizing my thoughts as well! When I met with the staff at The Piper, they said I was bringing up things they had not thought of before. So I hope this blog will help you as you care for a loved one or even yourself.
A couple of days after the incident I related in the last blog, I locked myself out of the house for the first time in my life! Fortunately my wonderful neighbor Mary was home and she called a locksmith. While we were sitting on her deck enjoying a cup of coffee while we waited for the locksmith, I could envision The Piper needing me, and calling on both of the phones that were locked in the house. When I got in the house about an hour later, yes, every phone was lit up with several messages. They were from The Piper, but also from daughter Valerie, since they had also called her when they couldn't reach me. Bob had gotten up from his wheelchair and had fallen and had 2 gashes on his head. It is their protocol and I think everyone else's protocol that when there is a head injury they are required to take the resident to the hospital to check for subdural hematoma. But Steve, the nurse I am on a first name basis with, told me he figured he knew what my wish would be since he was on when the other incident occurred, but he had to hear me say it. I totally understand this policy in this litigious society. But Valerie had asked what Bob was doing, and they said he was sitting there happily, so we both said, no, don't take him to the hospital.
Which brings me to something you need to be aware of. In our county, there is a wonderful ambulance service, Johnson County Medact, which was started by, and originally trained by, SMMC doctors. They have a form that you fill out and keep on your refrigerator called "file of life." If they are called to your home, and you are unresponsive, they look for that paper. It tells which hospital you would like to be taken to, and where your DNR papers are in your house. If you call 911 and ask for an ambulance, and it is not an emergency, please tell them it is for "transport only" if you do want to be taken to the hospital and have the DNR papers ready to give them. Otherwise they are required to resuscitate you in the ambulance if need be. Another service they provide is to help pick people up off the floor at home if they have fallen. It is better to call them to do it for you if you are caring for a loved one, so you don't hurt your back trying to pick them up, and also they can assess for injury before moving a person.
One more pitfall I am hearing about that I want to mention is that when you go to a hospital (even an emergency room), you go where your insurance covers your care. But there is a potential for "out of network" doctors to be working there. I have heard of it occurring in the ED, and also anesthesia departments, and of course you don't think to ask, especially when there is an emergency. If it happens to you, dispute the bill (which will be much higher of course). Another thing The Piper and I have talked about is how to identify the residents that are DNRs. And not all the residents in the memory care units are DNRs. They have talked about putting a sign in the room, but what happens if the arrest happens in the common areas? Now the list of DNRs is kept in a notebook, and all staff is to be oriented as to where it is. But I know in the heat of the moment, things get forgotten. All nurses say for them personally, it will be tattooed on their chest. But for me that is not good enough. Clothes aren't always removed when resuscitation is started, so I am going to have it tattooed on my forehead....Anyway, for Bob, I went to the hospital and got a bracelet for him. It has changed since I worked at the hospital and now is a different color and says DNR/AND. I didn't know what AND stands for, and neither did a lot of the hospital staff, I found out! But it stands for Allow Natural Death. Then I wish facilities had a form to fill out about what the family wants to be called for, or what they want their family member taken to the hospital for. The Piper does not have one, so I wrote one out myself and signed it. At first I just wrote to take him to the hospital for a fractured hip or other bone. Then I got to thinking of all the other scenarios that could cause severe pain--kidney stones (Bob has had 2 of them) and gall stones, etc, etc! So I added the words "Or anything causing severe pain." But now that is kind of a moot form, since Crossroads Hospice is on board. I cannot say enough good about hospice care. I know it has a negative connotation for some, as they think end of life has to be within a certain period of time after hospice care is implemented. But they reevaluate every 90 days, and Bob could potentially come off hospice care and then be readmitted. But with the steady decline that is common with dementia patients, they can requalify easily for the most part, and stay on hospice care for a longer period of time. Hospice is the first one now called for any need that Bob has, and they are coming out to see him frequently and are also helping with his physical care, as well as medical care. The staff from The Piper and Crossroads Hospice and I had a family meeting, so everything is in place to work together for Bob's very best care. They call me with a report after every visit.
I posted this to Facebook, but I will repeat it here for those of you not on Facebook (and because I really like it).
The journey of dementia is a journey like no other.
Dementia makes you realize that there's no time to waste.
Each moment is precious, a treasure in its own way.
We all know the last chapter in the book.
Dementia taught me that all any of us really has is today.
---Leanne Charmes, Memory People
Live life, and each moment, to the fullest!
Betty
A couple of days after the incident I related in the last blog, I locked myself out of the house for the first time in my life! Fortunately my wonderful neighbor Mary was home and she called a locksmith. While we were sitting on her deck enjoying a cup of coffee while we waited for the locksmith, I could envision The Piper needing me, and calling on both of the phones that were locked in the house. When I got in the house about an hour later, yes, every phone was lit up with several messages. They were from The Piper, but also from daughter Valerie, since they had also called her when they couldn't reach me. Bob had gotten up from his wheelchair and had fallen and had 2 gashes on his head. It is their protocol and I think everyone else's protocol that when there is a head injury they are required to take the resident to the hospital to check for subdural hematoma. But Steve, the nurse I am on a first name basis with, told me he figured he knew what my wish would be since he was on when the other incident occurred, but he had to hear me say it. I totally understand this policy in this litigious society. But Valerie had asked what Bob was doing, and they said he was sitting there happily, so we both said, no, don't take him to the hospital.
Which brings me to something you need to be aware of. In our county, there is a wonderful ambulance service, Johnson County Medact, which was started by, and originally trained by, SMMC doctors. They have a form that you fill out and keep on your refrigerator called "file of life." If they are called to your home, and you are unresponsive, they look for that paper. It tells which hospital you would like to be taken to, and where your DNR papers are in your house. If you call 911 and ask for an ambulance, and it is not an emergency, please tell them it is for "transport only" if you do want to be taken to the hospital and have the DNR papers ready to give them. Otherwise they are required to resuscitate you in the ambulance if need be. Another service they provide is to help pick people up off the floor at home if they have fallen. It is better to call them to do it for you if you are caring for a loved one, so you don't hurt your back trying to pick them up, and also they can assess for injury before moving a person.
One more pitfall I am hearing about that I want to mention is that when you go to a hospital (even an emergency room), you go where your insurance covers your care. But there is a potential for "out of network" doctors to be working there. I have heard of it occurring in the ED, and also anesthesia departments, and of course you don't think to ask, especially when there is an emergency. If it happens to you, dispute the bill (which will be much higher of course). Another thing The Piper and I have talked about is how to identify the residents that are DNRs. And not all the residents in the memory care units are DNRs. They have talked about putting a sign in the room, but what happens if the arrest happens in the common areas? Now the list of DNRs is kept in a notebook, and all staff is to be oriented as to where it is. But I know in the heat of the moment, things get forgotten. All nurses say for them personally, it will be tattooed on their chest. But for me that is not good enough. Clothes aren't always removed when resuscitation is started, so I am going to have it tattooed on my forehead....Anyway, for Bob, I went to the hospital and got a bracelet for him. It has changed since I worked at the hospital and now is a different color and says DNR/AND. I didn't know what AND stands for, and neither did a lot of the hospital staff, I found out! But it stands for Allow Natural Death. Then I wish facilities had a form to fill out about what the family wants to be called for, or what they want their family member taken to the hospital for. The Piper does not have one, so I wrote one out myself and signed it. At first I just wrote to take him to the hospital for a fractured hip or other bone. Then I got to thinking of all the other scenarios that could cause severe pain--kidney stones (Bob has had 2 of them) and gall stones, etc, etc! So I added the words "Or anything causing severe pain." But now that is kind of a moot form, since Crossroads Hospice is on board. I cannot say enough good about hospice care. I know it has a negative connotation for some, as they think end of life has to be within a certain period of time after hospice care is implemented. But they reevaluate every 90 days, and Bob could potentially come off hospice care and then be readmitted. But with the steady decline that is common with dementia patients, they can requalify easily for the most part, and stay on hospice care for a longer period of time. Hospice is the first one now called for any need that Bob has, and they are coming out to see him frequently and are also helping with his physical care, as well as medical care. The staff from The Piper and Crossroads Hospice and I had a family meeting, so everything is in place to work together for Bob's very best care. They call me with a report after every visit.
I posted this to Facebook, but I will repeat it here for those of you not on Facebook (and because I really like it).
The journey of dementia is a journey like no other.
Dementia makes you realize that there's no time to waste.
Each moment is precious, a treasure in its own way.
We all know the last chapter in the book.
Dementia taught me that all any of us really has is today.
---Leanne Charmes, Memory People
Live life, and each moment, to the fullest!
Betty
Thursday, May 18, 2017
Just when you think it is smooth sailing, the storm appears very suddenly and it takes all your being to navigate. Before I begin this blog, I want to make it clear that what happened is no way the fault of the facility where Bob resides, The Piper. Also, I want to say that I have never before met a Nurse Practitioner, that I have seen professionally, or as a friend, that I didn't like. They are generally so competent and well prepared in their profession. Some doctors rely on their more current knowledge!
It was a gorgeous day, and I worked happily in the yard for 5 hours, not even coming in to get something to drink. When I came in, I was washing my hands and my mobile phone rang (I didn't have it out in the yard with me). All I can say is, GOD WAS WITH ME, and made me go in the house so I could answer that phone. It was the Nurse Practitioner that is employed by the doctor that serves The Piper. She told me that Bob had had a stroke and needed to go to the hospital immediately. I told her "wait a minute" and told her that this was the third time this very thing had happened, and it happens when Bob is absolutely worn out, and he just falls into a very deep sleep, and can't be aroused. She said, no he has had a stroke and we need to go to the hospital NOW. I asked what would be gained by going to the hospital, and she said it was too late in the window to do tPA, (the clot busting drug) but at the very least they would need to give him fluids and probably do a brain scan. I told her no, that I didn't want any extraordinary measures done, to please not to do anything till I got there, and I was on my way. She then said, "Because you are refusing care for him, you realize that you are saying it is OK to let him die. Is that what you are saying?" I thought to myself that it was a rather blunt way of putting it, but to her I said "Yes, that is what I am saying."
As I pulled into The Piper parking lot my phone rang again and it was her, asking if I was there yet. I told her I was just pulling in, and she said "I will meet you at the door." Of course that made me think he had already died. But when I ran in, she introduced herself, and instead of comforting me, started babbling on. I took a deep breath, assured myself that he wasn't indeed dead, and turned around and headed for his room with her following. When we got to the room, I looked at Bob and he was lying there, sleeping peacefully, but he didn't rouse when I shook his shoulder and called his name (no sternal rub....). She then informed me that he had a normal temperature that morning, but that it had spiked to 101 degrees and that she suspected meningitis. I asked her why she suspected that. She said because when she was called to assess Bob, he was slumped over. She had tried to raise his head to assess his pupils, and he had groaned like his neck was sore. I told her "Oh, please! Bob always wakes up from a nap with a krink in his neck, and has for years." She said no, she was sure he had meningitis, and she was going to send him to the hospital for a spinal tap as she had to protect the other population of The Piper. I told her she wasn't going to do any such thing. She then told me to call the family as it wasn't going to be long. I told her our daughter and family that live 4 hours away had gone camping and weren't available by wifi or cell phone service. She then said, "Well then. We need to call hospice for you so you will have some support." I told her to please call Crossroads or Ascend Hospice. She left, and I headed for the car to get the bag I had packed with a toothbrush, a snack, and a book. When I came back in, she was in the common area. I asked if she had gotten ahold of hospice, as I was going to put that on hold, and she said yes, she had called Encompass. I asked why she had called Encompass when I had told her the two I wanted, and she said, "Because they can get here faster." I told her to cancel that. I went back to the room, again touched Bob, and he responded. So I put a straw to his lips to give him a drink. He drank 2 glasses down without stopping. I went out and told her that he was responding and drinking water like he couldn't get enough of it. She asked "Did he choke?" I told her that he did not. I went back to the room and was met by the nurse from The Piper and the director of nurses from The Piper. I told them what had happened, and asked what would have been done had they not been able to get ahold of me. They said that they would have taken him to the hospital per her direction. And I am sure it would have been Providence Hospital as it is closer, and not to Shawnee Mission Health where all his records are, and where I had written all over the chart that SM was where he was to go. Again I told them that God was with me, as taking him to the hospital could have been disastrous. Bob drank 4 more 12 oz glasses of water and was responding well, so I went home late that evening after telling both nurses he was not to go to ANY hospital, and please let him sleep. Of course I couldn't sleep, so I got up early and took a shower, and was at The Piper before 0730. Here was Bob, sitting at the breakfast table, happily eating breakfast.
After this incident, I spoke with our wonderful family physician and asked if she could take over Bob's care at The Piper. She said certainly, but she would like to think about hospice care instead, and asked if she could send in a consult to Crossroads Hospice. I said of course, but would he qualify? She said he would qualify on at least 2 counts--loss of mobility and loss of weight. So Crossroads came to evaluate Bob on Tuesday. He has gone from using a cane in December, to a walker in April, to a wheelchair in May. His weight has gone from 183 in the doctor's office in September (too high) to about 175 in December (fighting weight) to 163 now (too low). So Crossroads accepted him immediately. I am so happy. He got a new bed, with a foam bolster so he can't get out of bed and fall, a new snazzy wheelchair, all incontinent supplies, and all for free. They will take over his entire physical (including bathing) care, and medical care. It couldn't be better to give me peace of mind while I am in Israel and Jordan in June. I still pay for him to stay at The Piper, and they also help care for him. I met with the hospice nurse yesterday, with the chaplain and social worker today, and we have a family meeting with Piper staff tomorrow to make sure everyone is one the same page. So I hope the boat is upright again! I am sorry this is so long, but I don't want anyone to experience what I went through. It came out of the blue so quickly I couldn't believe it was happening.
In closing--May the Lord walk beside you to comfort you.
May the Lord walk above you to watch over you.
May the Lord walk beside you to keep you safe.
May the Lord walk before you to show you the way.
I certainly believe He was with me in these last 2 weeks as the ship was floundering!
Betty
P.S. Because I can write better than I can talk, and because it was therapeutic for me, I wrote an email to the NP. I asked her to please listen to the family when they tell you something, as they know them much better than you do, and know their idiosyncrasies. I told her not everyone fit into a mold, and Bob is one of them. I asked her to please think before she jumped to conclusions. I asked her to please consider the clients she was serving--she was serving dementia patients, not ED patients. I asked her to please learn from this experience (she has only been employed 2 weeks but I don't know if she is a new grad. She is not young). On a side note, I was told by a Piper staff member that the very same thing happened to someone else a few days later and her response was "what are the family's wishes?" Yay!
It was a gorgeous day, and I worked happily in the yard for 5 hours, not even coming in to get something to drink. When I came in, I was washing my hands and my mobile phone rang (I didn't have it out in the yard with me). All I can say is, GOD WAS WITH ME, and made me go in the house so I could answer that phone. It was the Nurse Practitioner that is employed by the doctor that serves The Piper. She told me that Bob had had a stroke and needed to go to the hospital immediately. I told her "wait a minute" and told her that this was the third time this very thing had happened, and it happens when Bob is absolutely worn out, and he just falls into a very deep sleep, and can't be aroused. She said, no he has had a stroke and we need to go to the hospital NOW. I asked what would be gained by going to the hospital, and she said it was too late in the window to do tPA, (the clot busting drug) but at the very least they would need to give him fluids and probably do a brain scan. I told her no, that I didn't want any extraordinary measures done, to please not to do anything till I got there, and I was on my way. She then said, "Because you are refusing care for him, you realize that you are saying it is OK to let him die. Is that what you are saying?" I thought to myself that it was a rather blunt way of putting it, but to her I said "Yes, that is what I am saying."
As I pulled into The Piper parking lot my phone rang again and it was her, asking if I was there yet. I told her I was just pulling in, and she said "I will meet you at the door." Of course that made me think he had already died. But when I ran in, she introduced herself, and instead of comforting me, started babbling on. I took a deep breath, assured myself that he wasn't indeed dead, and turned around and headed for his room with her following. When we got to the room, I looked at Bob and he was lying there, sleeping peacefully, but he didn't rouse when I shook his shoulder and called his name (no sternal rub....). She then informed me that he had a normal temperature that morning, but that it had spiked to 101 degrees and that she suspected meningitis. I asked her why she suspected that. She said because when she was called to assess Bob, he was slumped over. She had tried to raise his head to assess his pupils, and he had groaned like his neck was sore. I told her "Oh, please! Bob always wakes up from a nap with a krink in his neck, and has for years." She said no, she was sure he had meningitis, and she was going to send him to the hospital for a spinal tap as she had to protect the other population of The Piper. I told her she wasn't going to do any such thing. She then told me to call the family as it wasn't going to be long. I told her our daughter and family that live 4 hours away had gone camping and weren't available by wifi or cell phone service. She then said, "Well then. We need to call hospice for you so you will have some support." I told her to please call Crossroads or Ascend Hospice. She left, and I headed for the car to get the bag I had packed with a toothbrush, a snack, and a book. When I came back in, she was in the common area. I asked if she had gotten ahold of hospice, as I was going to put that on hold, and she said yes, she had called Encompass. I asked why she had called Encompass when I had told her the two I wanted, and she said, "Because they can get here faster." I told her to cancel that. I went back to the room, again touched Bob, and he responded. So I put a straw to his lips to give him a drink. He drank 2 glasses down without stopping. I went out and told her that he was responding and drinking water like he couldn't get enough of it. She asked "Did he choke?" I told her that he did not. I went back to the room and was met by the nurse from The Piper and the director of nurses from The Piper. I told them what had happened, and asked what would have been done had they not been able to get ahold of me. They said that they would have taken him to the hospital per her direction. And I am sure it would have been Providence Hospital as it is closer, and not to Shawnee Mission Health where all his records are, and where I had written all over the chart that SM was where he was to go. Again I told them that God was with me, as taking him to the hospital could have been disastrous. Bob drank 4 more 12 oz glasses of water and was responding well, so I went home late that evening after telling both nurses he was not to go to ANY hospital, and please let him sleep. Of course I couldn't sleep, so I got up early and took a shower, and was at The Piper before 0730. Here was Bob, sitting at the breakfast table, happily eating breakfast.
After this incident, I spoke with our wonderful family physician and asked if she could take over Bob's care at The Piper. She said certainly, but she would like to think about hospice care instead, and asked if she could send in a consult to Crossroads Hospice. I said of course, but would he qualify? She said he would qualify on at least 2 counts--loss of mobility and loss of weight. So Crossroads came to evaluate Bob on Tuesday. He has gone from using a cane in December, to a walker in April, to a wheelchair in May. His weight has gone from 183 in the doctor's office in September (too high) to about 175 in December (fighting weight) to 163 now (too low). So Crossroads accepted him immediately. I am so happy. He got a new bed, with a foam bolster so he can't get out of bed and fall, a new snazzy wheelchair, all incontinent supplies, and all for free. They will take over his entire physical (including bathing) care, and medical care. It couldn't be better to give me peace of mind while I am in Israel and Jordan in June. I still pay for him to stay at The Piper, and they also help care for him. I met with the hospice nurse yesterday, with the chaplain and social worker today, and we have a family meeting with Piper staff tomorrow to make sure everyone is one the same page. So I hope the boat is upright again! I am sorry this is so long, but I don't want anyone to experience what I went through. It came out of the blue so quickly I couldn't believe it was happening.
In closing--May the Lord walk beside you to comfort you.
May the Lord walk above you to watch over you.
May the Lord walk beside you to keep you safe.
May the Lord walk before you to show you the way.
I certainly believe He was with me in these last 2 weeks as the ship was floundering!
Betty
P.S. Because I can write better than I can talk, and because it was therapeutic for me, I wrote an email to the NP. I asked her to please listen to the family when they tell you something, as they know them much better than you do, and know their idiosyncrasies. I told her not everyone fit into a mold, and Bob is one of them. I asked her to please think before she jumped to conclusions. I asked her to please consider the clients she was serving--she was serving dementia patients, not ED patients. I asked her to please learn from this experience (she has only been employed 2 weeks but I don't know if she is a new grad. She is not young). On a side note, I was told by a Piper staff member that the very same thing happened to someone else a few days later and her response was "what are the family's wishes?" Yay!
Friday, April 21, 2017
Bob is now basically in a wheelchair. It is another loss of independence, but everyone (including Bob) is happy about it. I cannot determine if the loss of mobility is due to the fact that his brain is not telling his feet to move anymore, or if his legs are just too weak to hold him up. The assistant and I were walking him back to his room a couple of weeks ago with his walker, and I didn't think we were going to make it to his room without lowering him to the floor. I asked if she thought it was time for a wheelchair, and she said "Oh, yes, it would be so much easier." I was able to get the one a friend Grandpa Mac had used before he passed away and took it out the next morning. It is just a transport wheelchair, so it is small and portable, but it fits under the sink and the table, so it is wonderful for what they need it for. He rides in it like a king in his chariot and now he is so much more co-operative with cares when he needs them when he doesn't have to walk all the way back to his room. Could it be that he just went on strike? Hmmm.
This post is going to be about the 3 kinds of grief nobody talks about. It is brought home to me every time I go visit, as a friend from the support group visits his wife in the room across the hall from Bob. She is on hospice as she suddenly took a turn for the worse. I look every time to see if her name is still on the door.
1. The first is the loss of the person we once knew. They are still in your life, but not in the way you remember them or once knew them. Dementia changes people. The ties that bind us to one another, the shared memories, and even the personality are no longer accessible. Other illness create a similar sense of loss--a traumatic brain injury or stroke, or a loved one who is drug or alcohol dependent.
2. The loss of a person we haven't yet lost. "Anticipatory grief" is a term that refers to the grief felt about someone with a life-limiting illness; friends, family and caregivers often experience it in anticipation of an eventual death. These losses are significant. We lose our assumptive world. All our plans, thoughts, our sense of the future--even our safety and security--are now challenged. The future we know is not the one we once imagined. As any illness progresses, we continue to experience additional losses and grieve each one.
3. Loss of the person we used to be. Everything changes as you age. Some changes you take in stride, but others affect you deeply. Consider the birth of a child. You may have anticipated this event for years and be overjoyed. But you also know life will be different now; over the next couple of decades, your own freedom will be limited, and so will your sleep. Each transition in our lives--no matter how positive--has an undercurrent. The thrill of passing your driving test and earning your license held so much meaning, a mark both of accomplishment and maturity that promised new freedom and adventure. Now, imagine the pain and grief when, through age or disability, you are forced to surrender than license and all it has meant.
Remember: Grief is not always about death, but it is always about attachment and separation. You need to have your grief acknowledged and understand the validity of your emotions. You are not the only one to have mourned, and you are not alone.
The above are excerpts from "Grief is a Journey" by Kenneth J. Doka, PhD.
So many of my friends have lost their loved ones to death recently, and are going through all the stages of grief that Elizabeth Kuebler-Ross identified. I grieve along with them for their loss, and can identify as I am going through "anticipatory grief".
The following is authored by Claudia Minden Weisz. Thank you to Yara Young for sharing it with me.
I asked God to give me happiness. God said, NO. I give you blessings, happiness is up to you.
I asked God to take away my habit. God said, NO. It is not for me to take away, but for you to give up.
I asked God to spare me pain. God said, NO. Suffering draws you apart from worldly care and brings you closer to Me.
I asked God to make my spirit grow. God said, NO. You must grow on your own, but I will prune you to make your beautiful.
I asked God for all things that I may enjoy life. God said NO. I will give you life, so that you may enjoy all things.
I asked God to help me LOVE others, as much as He loves me. God said...Ah, finally you have the idea.
The sing-alongs we are doing at The Piper are going well. The residents and staff both ask me, and whoever is with me, to sing when we come. Sometimes we haven't planned on it, but when it is such a bright spot in their lives, how can you deny them? Bob usually sings lustily along, and the residents seem to get such pleasure from being able to read the lyrics Arlene Magruder printed out for them. We went out on Easter Sunday not planning to sing, as we thought the residents would have company. But NO ONE did, so we had a real song fest! I know it gives us more than we could ever give them. (More people had company after the Royals game was over...)
I have found that I have always needed something to anticipate. So rather than focus on "anticipatory grief" I am anticipating something else. I am going to fulfill another wish on my bucket list and take a trip to Israel and Jordan in June. It is lead by Andy Nash from Southern University, and I have heard so many good things about the trip that I am really excited. Now if world leaders will just cooperate and keep things to a dull roar, that will be good.
May God give you the grace to face life's challenges, and may He give you LOVE.
Betty
This post is going to be about the 3 kinds of grief nobody talks about. It is brought home to me every time I go visit, as a friend from the support group visits his wife in the room across the hall from Bob. She is on hospice as she suddenly took a turn for the worse. I look every time to see if her name is still on the door.
1. The first is the loss of the person we once knew. They are still in your life, but not in the way you remember them or once knew them. Dementia changes people. The ties that bind us to one another, the shared memories, and even the personality are no longer accessible. Other illness create a similar sense of loss--a traumatic brain injury or stroke, or a loved one who is drug or alcohol dependent.
2. The loss of a person we haven't yet lost. "Anticipatory grief" is a term that refers to the grief felt about someone with a life-limiting illness; friends, family and caregivers often experience it in anticipation of an eventual death. These losses are significant. We lose our assumptive world. All our plans, thoughts, our sense of the future--even our safety and security--are now challenged. The future we know is not the one we once imagined. As any illness progresses, we continue to experience additional losses and grieve each one.
3. Loss of the person we used to be. Everything changes as you age. Some changes you take in stride, but others affect you deeply. Consider the birth of a child. You may have anticipated this event for years and be overjoyed. But you also know life will be different now; over the next couple of decades, your own freedom will be limited, and so will your sleep. Each transition in our lives--no matter how positive--has an undercurrent. The thrill of passing your driving test and earning your license held so much meaning, a mark both of accomplishment and maturity that promised new freedom and adventure. Now, imagine the pain and grief when, through age or disability, you are forced to surrender than license and all it has meant.
Remember: Grief is not always about death, but it is always about attachment and separation. You need to have your grief acknowledged and understand the validity of your emotions. You are not the only one to have mourned, and you are not alone.
The above are excerpts from "Grief is a Journey" by Kenneth J. Doka, PhD.
So many of my friends have lost their loved ones to death recently, and are going through all the stages of grief that Elizabeth Kuebler-Ross identified. I grieve along with them for their loss, and can identify as I am going through "anticipatory grief".
The following is authored by Claudia Minden Weisz. Thank you to Yara Young for sharing it with me.
I asked God to give me happiness. God said, NO. I give you blessings, happiness is up to you.
I asked God to take away my habit. God said, NO. It is not for me to take away, but for you to give up.
I asked God to spare me pain. God said, NO. Suffering draws you apart from worldly care and brings you closer to Me.
I asked God to make my spirit grow. God said, NO. You must grow on your own, but I will prune you to make your beautiful.
I asked God for all things that I may enjoy life. God said NO. I will give you life, so that you may enjoy all things.
I asked God to help me LOVE others, as much as He loves me. God said...Ah, finally you have the idea.
The sing-alongs we are doing at The Piper are going well. The residents and staff both ask me, and whoever is with me, to sing when we come. Sometimes we haven't planned on it, but when it is such a bright spot in their lives, how can you deny them? Bob usually sings lustily along, and the residents seem to get such pleasure from being able to read the lyrics Arlene Magruder printed out for them. We went out on Easter Sunday not planning to sing, as we thought the residents would have company. But NO ONE did, so we had a real song fest! I know it gives us more than we could ever give them. (More people had company after the Royals game was over...)
I have found that I have always needed something to anticipate. So rather than focus on "anticipatory grief" I am anticipating something else. I am going to fulfill another wish on my bucket list and take a trip to Israel and Jordan in June. It is lead by Andy Nash from Southern University, and I have heard so many good things about the trip that I am really excited. Now if world leaders will just cooperate and keep things to a dull roar, that will be good.
May God give you the grace to face life's challenges, and may He give you LOVE.
Betty
Thursday, March 30, 2017
This post could be called "Life at the Piper," or Peyton Place Piper, or any number of names. I have mentioned before the little lady that has taken a liking to Bob. She looks so sweet and innocent, but in her chest beats the heart of a cougar. Her normal self would probably be horrified at this turn of events. I will call her "Kitty" to protect the guilty (sincere apologies to a nursing roommate and still dear friend named Katherine, aka "Kitty"!) The last time we visited the Piper when friends Janet and Leonard were here, we were all in the sunroom. Leonard, being such a nice guy, answered Kitty as she engaged him. All of a sudden Kitty opened her sweater and flashed him. Fortunately she had a blouse on underneath. Then she went over to her rival, Janet, and flashed her as well. As Janet was staring dumbfounded at her abdomen, Kitty said "Look a little higher. You aren't looking high enough." Under normal circumstances I would take offense at my husband being stalked, but now I just try to find the humor in it, and Janet is as well. One of the other residents, a dear lady, has warned Kitty to keep away from Bob--"he is Betty's husband." And that HAS seemed to help.
The soap opera continues. One of the newer residents has a dog, and she is such a cute little thing. The owner is well enough to take some care of the dog, but when she takes her outside, she forgets to put the leash on, and the little Shit(zu) can scoot under the fence. This happened one day while I was there, and there was no one to chase her. So add dog-catching to my list of talents.
We are continuing with the impromptu singing for the residents. I want to emphasize that it is by no means a performance, and leading the singing while Gail plays the piano is NOT one of my talents. I have sung alto for years, and the melody to most of the songs is really high. But the residents seem to enjoy it so much and ask for us to sing when we come, so we do it just to please them. Some that never interact in any other way participate, and have beautiful voices. Many thanks to Arlene Magruder for printing out the lyrics to the songs, and anyone that happens to be there for handing them out and picking them up. One of the hymns that they really seemed to enjoy was "Never Part Again". Then I looked across the page at the hymn "In a little while we're going home" and immediately decided not to sing that. One day I was singing and playing the piano both as no one else except Arlene was there. I sang the song "Shenandoah" and Arlene told me that Bob started crying. I am glad my back was to him, otherwise I would not have been able to finish the song. Our memories of Shenandoah (National Park, not the river) started by going there on our high school senior class trip. We camped, as that was all anyone could afford, and a bucket of water froze overnight. After we were married and lived in Maryland we went there tent camping with the children, and would end up carrying them back from hikes. In later years we went back with them and stayed in cabins in the park, and did NOT carry them back from hikes. After they left home, Bob and I went back for a few anniversaries during trips to Maryland. One weekend we stayed at The Inn at Little Washington" which, if you live in the area, you know is about as far from tent camping as you can get. But it is right outside the park, so we went back in to the park to do the traditional hikes. So Bob must have been remembering the fun times we had there.
Kim, the director of the Piper, had the Alzheimer's Association download many of Bob's favorite CDs on to an iPod type device. It gives him about 7 hours of listening. He is not able to play it himself, but I started it for him the other day, and he seemed to enjoy it.
Sincerely, life at The Piper seems very homelike, and the staff is very pleasant and competent. I want to thank them all, as they have to be so patient to do that kind of work. I could not do that day after day. I like it there as it does not "feel" like an institution.
While we are talking about music, I would like to close with a song the Righteous Brothers made famous, "Unchained Melody". It has special meaning for me now, and I am sure it also strikes a chord with others who have already lost their mate.
Oh my love, my darling, I've hungered for your touch
A long lonely time
And time goes by so slowly, and time can do so much
Are you still mine?
I need your love, I need your love,
God speed your love to me.
Lonely rivers flow to the sea, to the sea,
To the open arms of the sea.
Lonely rivers cry, wait for me, wait for me
I'll be coming home, wait for me.
Lyrics by HyZaret, music by Alex North
Leonard Marsh's favorite saying is "when life gives you lemons, make lemonade." He went a bit further after our last songfest when he was here (with his baritone voice, never missing a word, even though we didn't have the lyrics all printed out yet.) "When life gives you Alzie, go ahead and Waltzie" he proclaimed.
Thank you Leonard. I will try to remember that.
Betty
The soap opera continues. One of the newer residents has a dog, and she is such a cute little thing. The owner is well enough to take some care of the dog, but when she takes her outside, she forgets to put the leash on, and the little Shit(zu) can scoot under the fence. This happened one day while I was there, and there was no one to chase her. So add dog-catching to my list of talents.
We are continuing with the impromptu singing for the residents. I want to emphasize that it is by no means a performance, and leading the singing while Gail plays the piano is NOT one of my talents. I have sung alto for years, and the melody to most of the songs is really high. But the residents seem to enjoy it so much and ask for us to sing when we come, so we do it just to please them. Some that never interact in any other way participate, and have beautiful voices. Many thanks to Arlene Magruder for printing out the lyrics to the songs, and anyone that happens to be there for handing them out and picking them up. One of the hymns that they really seemed to enjoy was "Never Part Again". Then I looked across the page at the hymn "In a little while we're going home" and immediately decided not to sing that. One day I was singing and playing the piano both as no one else except Arlene was there. I sang the song "Shenandoah" and Arlene told me that Bob started crying. I am glad my back was to him, otherwise I would not have been able to finish the song. Our memories of Shenandoah (National Park, not the river) started by going there on our high school senior class trip. We camped, as that was all anyone could afford, and a bucket of water froze overnight. After we were married and lived in Maryland we went there tent camping with the children, and would end up carrying them back from hikes. In later years we went back with them and stayed in cabins in the park, and did NOT carry them back from hikes. After they left home, Bob and I went back for a few anniversaries during trips to Maryland. One weekend we stayed at The Inn at Little Washington" which, if you live in the area, you know is about as far from tent camping as you can get. But it is right outside the park, so we went back in to the park to do the traditional hikes. So Bob must have been remembering the fun times we had there.
Kim, the director of the Piper, had the Alzheimer's Association download many of Bob's favorite CDs on to an iPod type device. It gives him about 7 hours of listening. He is not able to play it himself, but I started it for him the other day, and he seemed to enjoy it.
Sincerely, life at The Piper seems very homelike, and the staff is very pleasant and competent. I want to thank them all, as they have to be so patient to do that kind of work. I could not do that day after day. I like it there as it does not "feel" like an institution.
While we are talking about music, I would like to close with a song the Righteous Brothers made famous, "Unchained Melody". It has special meaning for me now, and I am sure it also strikes a chord with others who have already lost their mate.
Oh my love, my darling, I've hungered for your touch
A long lonely time
And time goes by so slowly, and time can do so much
Are you still mine?
I need your love, I need your love,
God speed your love to me.
Lonely rivers flow to the sea, to the sea,
To the open arms of the sea.
Lonely rivers cry, wait for me, wait for me
I'll be coming home, wait for me.
Lyrics by HyZaret, music by Alex North
Leonard Marsh's favorite saying is "when life gives you lemons, make lemonade." He went a bit further after our last songfest when he was here (with his baritone voice, never missing a word, even though we didn't have the lyrics all printed out yet.) "When life gives you Alzie, go ahead and Waltzie" he proclaimed.
Thank you Leonard. I will try to remember that.
Betty
Friday, March 3, 2017
Bob has been at The Piper for almost 2 months now. He is doing very well. He has started physical therapy through Shawnee Mission Medical Center, and they think it is making him stronger, and able to balance better. Our son Ron was in town last weekend and went to see him. He and a CNA tried to get Bob from the dining table to an easy chair so they could visit better. Bob was moving the walker, but not his body. They told him that he would have to take a step, as the walker was getting farther and farther away, and he was going to fall flat on his face. He told them forcefully "I don't have to take a step." What is the saying? "Mind over matter"? When Bob first went there, he was having tremors so bad that I was starting to have to feed him. When the head nurse Karen Berning, did the intake assessment we were talking about the "whole lot of shaking" that was going on. She said the protocol was to give the minimum dosage of a drug, and asked if it was OK with me if they tried decreasing the resperidol that he was taking for agitation. I said, "Well, he is here now, so you will have to deal with the consequences!" She said they would decrease it to once a day instead of twice, but could increase it again if need be. I asked about adding depakote, which is normally given for seizures, but it is also given to decrease the extrapyramidal (outside the columns of motor fibers that run on each side of the spinal cord) side effects of resperidol. But Bob is very sensitive to drugs, so adding that could increase the chance of a whole new set of side effects, among them abnormality in thinking and tremors! I had asked the neurologist at the last appointment if the tremors were the beginning of Parkinson's disease, and he said no, just the progression of Alzheimer's. He knew Bob was taking resperidol, but did not pick up that the tremors were possibly a side effect of it. The tremors have almost stopped now with the decrease. So kudos to Karen! It pays to have someone that works with this all the time take over!
I have been playing the piano sometimes for the residents when I have gone out, and with friends Harry and Gail and Heather Janke and Arlene Magruder have done some sing-a-long type activities. Some (including Bob) really belt out the songs, and I can hear residents in other rooms singing as well. Arlene found a wonderful book of oldie but goodie songs that everyone will know, and the same group is going out again tomorrow and do it again. Bob is adapting very well to the "household" and it is fun to see the residents watch out for, and help each other. It is also wonderful to find out about the life stories of others that are there, and they are eager to tell you! Maybe with some embellishments!
I am so happy Bob is in a good facility, and the atmosphere there just seems so calming. There is a web site you can look up "Nursing Homes Abuse Advocate.com" and it tells the facilities in each state that are cited for abuse and/or neglect. It is refreshed every month. If you have questions about a particular facility you can go to them and ask to see the paperwork. They are required by law to show it to you. It may just be a complaint about a policy, or it could be much more serious. When you go to the site click on "menu" and then "offender by state." It is very interesting. Huge prices don't always mean good care.....
A little more "taking care of business" that some may be interested in. I watched a special on PBS about Alzheimer's disease that is now really a disease of epidemic proportions. They were talking about the state of Florida with it's aging population. When a person applies for Medicaid (NOT Medicare) there, it can take up to 5 years to be approved, they are so far behind. What do you do in the meantime? If you apply too soon, you won't be approved! It is having disastrous consequences in Florida, as after paying out Medicaid, the state has no funding for roads, education, or anything else. On the other hand, New Hampshire put a moratorium on building elder care facilities years ago as they could see the handwriting on the wall. Some facilities will tell you that they do not take "medicaid pending" patients as the person may not ultimately qualify. And what if a facility has a waiting list to get in? The timing can be very tricky, and you should enlist the help of a social worker or elder care attorney that "knows the ropes." However, when you are approved, the payment is retroactive to when you filed. Again, you have to cover it in the meantime. Some facilities require a nonrefundable downpayment when you are applying, others it is refundable. And what if you are private pay and then run out of money? Some facilities have a foundation that takes over and pays when that happens, but anyone please correct me if I am wrong, but I think that typically happens when you have bought into the facility. Another resource is veteran's benefits, and they are very helpful. I just found out when I filed my taxes this week that respite care and care in a long term care facility is tax deductible. There are some qualifications and fine print to this, but at least that is some help as well.
I am leaving in a couple of weeks on a grandchildren tour again while they are on Spring break, but it makes it so much more enjoyable when I don't have to worry about Bob while I am gone. And the cats will be well cared for as well, by Denise, who is a mutual friend of their former "mother" and me. She comes to the house, so they don't have to be stressed by moving. They have pretty much taken over the house....I just live here.
In closing, this has become my mantra. "Jesus will not give me everything I want, but He will give me everything I need." And I see daily evidence of His leading me in this journey.
Until next time,
Betty
I have been playing the piano sometimes for the residents when I have gone out, and with friends Harry and Gail and Heather Janke and Arlene Magruder have done some sing-a-long type activities. Some (including Bob) really belt out the songs, and I can hear residents in other rooms singing as well. Arlene found a wonderful book of oldie but goodie songs that everyone will know, and the same group is going out again tomorrow and do it again. Bob is adapting very well to the "household" and it is fun to see the residents watch out for, and help each other. It is also wonderful to find out about the life stories of others that are there, and they are eager to tell you! Maybe with some embellishments!
I am so happy Bob is in a good facility, and the atmosphere there just seems so calming. There is a web site you can look up "Nursing Homes Abuse Advocate.com" and it tells the facilities in each state that are cited for abuse and/or neglect. It is refreshed every month. If you have questions about a particular facility you can go to them and ask to see the paperwork. They are required by law to show it to you. It may just be a complaint about a policy, or it could be much more serious. When you go to the site click on "menu" and then "offender by state." It is very interesting. Huge prices don't always mean good care.....
A little more "taking care of business" that some may be interested in. I watched a special on PBS about Alzheimer's disease that is now really a disease of epidemic proportions. They were talking about the state of Florida with it's aging population. When a person applies for Medicaid (NOT Medicare) there, it can take up to 5 years to be approved, they are so far behind. What do you do in the meantime? If you apply too soon, you won't be approved! It is having disastrous consequences in Florida, as after paying out Medicaid, the state has no funding for roads, education, or anything else. On the other hand, New Hampshire put a moratorium on building elder care facilities years ago as they could see the handwriting on the wall. Some facilities will tell you that they do not take "medicaid pending" patients as the person may not ultimately qualify. And what if a facility has a waiting list to get in? The timing can be very tricky, and you should enlist the help of a social worker or elder care attorney that "knows the ropes." However, when you are approved, the payment is retroactive to when you filed. Again, you have to cover it in the meantime. Some facilities require a nonrefundable downpayment when you are applying, others it is refundable. And what if you are private pay and then run out of money? Some facilities have a foundation that takes over and pays when that happens, but anyone please correct me if I am wrong, but I think that typically happens when you have bought into the facility. Another resource is veteran's benefits, and they are very helpful. I just found out when I filed my taxes this week that respite care and care in a long term care facility is tax deductible. There are some qualifications and fine print to this, but at least that is some help as well.
I am leaving in a couple of weeks on a grandchildren tour again while they are on Spring break, but it makes it so much more enjoyable when I don't have to worry about Bob while I am gone. And the cats will be well cared for as well, by Denise, who is a mutual friend of their former "mother" and me. She comes to the house, so they don't have to be stressed by moving. They have pretty much taken over the house....I just live here.
In closing, this has become my mantra. "Jesus will not give me everything I want, but He will give me everything I need." And I see daily evidence of His leading me in this journey.
Until next time,
Betty
Thursday, February 2, 2017
Since I took a nap this afternoon and am wide awake, I will share another blog with you. I find that I am still catching up on sleep. I think I was not so physically exhausted, just emotionally exhausted.
I am trying to focus on all things positive. I cannot let myself have a "pity party"! Bob is still very happy and seems to be enjoying The Piper. When I visit him and tell him I am leaving, I always give him a kiss on the lips, but the other day another resident (female) beat me to it, and then I was a little hesitant to follow! I just have so much to be thankful for. I still remember the state hospital where we took our psychiatric affiliation in Sykesville MD (should have been spelled "Psychsville"). A few years after we were there, I guess due to lack of state funding, they just opened the doors and let everyone out on the street. I cannot imagine where they went. Homeless on the streets of Baltimore? The only ones that remained were the criminally insane. I also don't know what happened to whole multistory buildings of micro and macrocephalic children. So to be able to see Bob in a beautiful facility where he is content is wonderful. I take photo albums out and he is usually able to identify his brothers and grandmother in the albums.
I still miss Bob the most, I think, when I am watching football. We have a long history of football together. In high school we went together with a teacher to the Baltimore airport at 6am to watch the victorious Baltimore Colts come home. And he would write down all the plays from Sunday football games, and bring them to school Monday for me to type up. That was fine, but I could barely read his writing! We watched games together every Sunday before Superbowls were even thought of! And in recent months, when he didn't even know which teams were playing, he was still there to watch the game with me. Thanks to Gail and Harry Janke who invited me over for this Superbowl Sunday!
In this blog I am going to address caregiving of aging parents (I bet our children can't wait to read this!) Not to negate the ones taking care of their parents, but I have done both parents and spouse now, and it is a whole different ball game with your spouse. When you place parents in a facility, it doesn't turn your whole world upside down. My father died of Alzheimer's and my mother was able to stay on her 8 acre homeplace where they retired in the hills of Tennessee for 8 years afterward. She was still active as a nurse in the 13 bed hospital there, and set up a small surgery department to do minor surgeries. And she worked in a clinic for an old country doctor. When she was 85 years old, the doctor was away, and a patient came into the clinic in labor. Mother told her to go to the hospital in the nearest town, but she refused saying they didn't have insurance. She promised verbally she wouldn't sue if anything went wrong, and mother delivered the lady's 19th baby in the clinic. The dad went and got milkshakes for everyone while mother was bathing the baby and the mother, and then off they went, promising to be back for their 20th! Of course, the 19th baby is more dangerous than the 2nd baby, as the uterine muscles are weak, and may not clamp down to stop bleeding after delivery....A year later I had to move my mother here as she was having TIAs from high blood pressure than wasn't well controlled. She was in Overland Park Place, a beautiful independent living facility near the hospital where I worked for 6 years. But as I hear now from so many at the support group, she was not a happy camper, and as is so usual, took it out on her daughter. Her favorite saying was that she always went to breakfast so she could see who wasn't there, and had died during the night! She didn't need assistant living as I was her caretaker! We took her with us on travels, she flew back to TN to visit, and she came to spend the day at our home at least once a week. But she still wasn't happy. I tried to go every morning after I got off work and take her home cooked leftovers, and biscuits and gravy from the hospital (which she loved) as peace offerings, but it didn't help. I "got it" then, and I "get it" even more now as I age, how difficult it was for her to leave her home, her flower gardens, and her friends. After a bout of pneumonia with complications she had to move next door to the Overland Park Manor, a nursing home which she hated even more. She had a private room with all her furniture and pictures surrounding her, but she was still feisty! But at both facilities, people that worked there would pull me aside and tell me "When you are not here, she is the life of the party. She is just piling the guilt on you when you come." She was alert until the day she died at age 91.
I decided I needed another living thing in the house with me. A cousin told me that when she married and moved from the farm where she was raised, and moved to an apartment in a city, that she bought guppies. I decided I wanted to go up the scale a bit! I had a dear friend who died suddenly in September 3 weeks after finding out she had cancer. Her dying thoughts were about her two "fur babies", and what would happen to them. I could not care for anything else in September as I was caring for Bob, and a mutual friend, Denise, told me the family (there were not many family) was going to take them. Then the other day Denise texted me and said they had not been adopted as plans for the family to take them had fallen through. She asked if I knew anyone who would want them?! "They" are 2 gorgeous 8 year old kitties, Sadie, who is a tortoiseshell, and Smoky, who is a beautiful grey. They are sisters. They had been in Denise's basement for 3 months, as she is allergic to cats, and also has a dog. Well, God's timing was perfect, so now I am their proud owner. I think their routine was to sleep during the day, and they still are shy and hide during the day. But in the evening, they are ready to roll! When I go to bed, they jump on the bed, and have hissing wars as to who is going to get near me. Both will lay on their backs with every leg up and let me rub their tummies, and then they will do the "kneading" thing on my tummy. I think they are saying "thank you"! And I like to think that Ruth is smiling!
I will close with a quote by Gilda Radner. I totally agree with the first two sentences. The last sentence I am still working on believing! "Some stories don't have a clear beginning, middle, and end. Life is about not knowing, having to change, taking the moment and making the best of it, without knowing what's going to happen next. Delicious ambiguity."
I have a cat rolling around on the keyboard...So goodnight!
Betty
I am trying to focus on all things positive. I cannot let myself have a "pity party"! Bob is still very happy and seems to be enjoying The Piper. When I visit him and tell him I am leaving, I always give him a kiss on the lips, but the other day another resident (female) beat me to it, and then I was a little hesitant to follow! I just have so much to be thankful for. I still remember the state hospital where we took our psychiatric affiliation in Sykesville MD (should have been spelled "Psychsville"). A few years after we were there, I guess due to lack of state funding, they just opened the doors and let everyone out on the street. I cannot imagine where they went. Homeless on the streets of Baltimore? The only ones that remained were the criminally insane. I also don't know what happened to whole multistory buildings of micro and macrocephalic children. So to be able to see Bob in a beautiful facility where he is content is wonderful. I take photo albums out and he is usually able to identify his brothers and grandmother in the albums.
I still miss Bob the most, I think, when I am watching football. We have a long history of football together. In high school we went together with a teacher to the Baltimore airport at 6am to watch the victorious Baltimore Colts come home. And he would write down all the plays from Sunday football games, and bring them to school Monday for me to type up. That was fine, but I could barely read his writing! We watched games together every Sunday before Superbowls were even thought of! And in recent months, when he didn't even know which teams were playing, he was still there to watch the game with me. Thanks to Gail and Harry Janke who invited me over for this Superbowl Sunday!
In this blog I am going to address caregiving of aging parents (I bet our children can't wait to read this!) Not to negate the ones taking care of their parents, but I have done both parents and spouse now, and it is a whole different ball game with your spouse. When you place parents in a facility, it doesn't turn your whole world upside down. My father died of Alzheimer's and my mother was able to stay on her 8 acre homeplace where they retired in the hills of Tennessee for 8 years afterward. She was still active as a nurse in the 13 bed hospital there, and set up a small surgery department to do minor surgeries. And she worked in a clinic for an old country doctor. When she was 85 years old, the doctor was away, and a patient came into the clinic in labor. Mother told her to go to the hospital in the nearest town, but she refused saying they didn't have insurance. She promised verbally she wouldn't sue if anything went wrong, and mother delivered the lady's 19th baby in the clinic. The dad went and got milkshakes for everyone while mother was bathing the baby and the mother, and then off they went, promising to be back for their 20th! Of course, the 19th baby is more dangerous than the 2nd baby, as the uterine muscles are weak, and may not clamp down to stop bleeding after delivery....A year later I had to move my mother here as she was having TIAs from high blood pressure than wasn't well controlled. She was in Overland Park Place, a beautiful independent living facility near the hospital where I worked for 6 years. But as I hear now from so many at the support group, she was not a happy camper, and as is so usual, took it out on her daughter. Her favorite saying was that she always went to breakfast so she could see who wasn't there, and had died during the night! She didn't need assistant living as I was her caretaker! We took her with us on travels, she flew back to TN to visit, and she came to spend the day at our home at least once a week. But she still wasn't happy. I tried to go every morning after I got off work and take her home cooked leftovers, and biscuits and gravy from the hospital (which she loved) as peace offerings, but it didn't help. I "got it" then, and I "get it" even more now as I age, how difficult it was for her to leave her home, her flower gardens, and her friends. After a bout of pneumonia with complications she had to move next door to the Overland Park Manor, a nursing home which she hated even more. She had a private room with all her furniture and pictures surrounding her, but she was still feisty! But at both facilities, people that worked there would pull me aside and tell me "When you are not here, she is the life of the party. She is just piling the guilt on you when you come." She was alert until the day she died at age 91.
I decided I needed another living thing in the house with me. A cousin told me that when she married and moved from the farm where she was raised, and moved to an apartment in a city, that she bought guppies. I decided I wanted to go up the scale a bit! I had a dear friend who died suddenly in September 3 weeks after finding out she had cancer. Her dying thoughts were about her two "fur babies", and what would happen to them. I could not care for anything else in September as I was caring for Bob, and a mutual friend, Denise, told me the family (there were not many family) was going to take them. Then the other day Denise texted me and said they had not been adopted as plans for the family to take them had fallen through. She asked if I knew anyone who would want them?! "They" are 2 gorgeous 8 year old kitties, Sadie, who is a tortoiseshell, and Smoky, who is a beautiful grey. They are sisters. They had been in Denise's basement for 3 months, as she is allergic to cats, and also has a dog. Well, God's timing was perfect, so now I am their proud owner. I think their routine was to sleep during the day, and they still are shy and hide during the day. But in the evening, they are ready to roll! When I go to bed, they jump on the bed, and have hissing wars as to who is going to get near me. Both will lay on their backs with every leg up and let me rub their tummies, and then they will do the "kneading" thing on my tummy. I think they are saying "thank you"! And I like to think that Ruth is smiling!
I will close with a quote by Gilda Radner. I totally agree with the first two sentences. The last sentence I am still working on believing! "Some stories don't have a clear beginning, middle, and end. Life is about not knowing, having to change, taking the moment and making the best of it, without knowing what's going to happen next. Delicious ambiguity."
I have a cat rolling around on the keyboard...So goodnight!
Betty
Friday, January 13, 2017
I usually only post a new addition to my blog about every month. But so many people have asking how he is doing and how I am doing, that I decided to write it tonight. Thank you all for your messages of love and support via Facebook and email. They mean a lot to me. He has been there for a week today. In that week, I had had time to sort out my myriad of feelings and also get some needed rest. I slept for 11 hours for a couple of nights. I guess I was more tired than I would admit!
First of all, I am SAD. No one could love Bob like I love him. (Isn't there a song like that?!) And no one could care for Bob like I could care for him. After all, I am a nurse, and I was giving him 1:1 care. Where else can you get such good staffing ratios?!
Then there is RELIEF. Relief that I was finally able to make the decision and be at peace with it. When both the Executive Director of The Piper and the Director of Nurses came to our home to evaluate Bob, I was so impressed. First of all, the DON had been a nursing assistant at SMMC. She worked days, so I didn't know her, but her now- husband worked nights as an RN on telemetry and I knew him well, and loved him! I am happy for them, and so proud of her! There is so much I like about The Piper. On weekends there is as much staff as on weekdays. The mealtimes are flexible, and if the resident doesn't want to eat when it is served, the staff will serve them later. If they don't like what is on the menu, they will fix them something different. (They have a whole list of Bob's favorite foods that they asked me to provide). They also allow pets. I would say that this is mostly on the assisted living floors, but there have been some on the dementia units, and the staff will also care for them for an extra fee.
Then there is PEACE. I may be wrong, but I don't think I will feel the guilt that so many people voice in the support groups. When they get rested up, they look back and think they could have gone on longer. Bob is going to have physical therapy, and I think that will do him a world of good. Maybe it will give him better balance and better strength so he won't fall, as he has fallen a couple of times since being there. I was right by his side the last 3 days, or he would have fallen more at home.
When I have been out to see Bob, he seems very content. He has never asked to come home with me, and that makes it easier. When I tell him I am leaving, he always says "Please be careful."
Then I am discomBOBulated! I can only compare this to when we have lost a beloved pet. You look at their favorite chair, fully expecting to see them curled up in it. Or you look behind you, fully expecting to see them following you. I have thought I have heard him breathing softly in the bed beside me. I am sure this will get better with time, although you miss them so. But I think of all the women that I know, and those that I don't know, who live alone for whatever reason. Even if you divorce and are happy to get the ******out, there must be a sense of loss. I am having to get used to cooking for one. I have never cooked for one before! The more people I am cooking for, the happier I am! But maybe it will help me lose a few unwanted pounds! So I am having to get used to a new "normal". But Erma Bombeck once said that "normal" is a setting on your washing machine!
I imagine that some people feel PITY for me. I know I did years ago when someone we knew was in my situation (little knowing that it would be my journey someday). But I am here to tell you there are worse things. Just look at the ALS (Lou Gehrig's disease) patients whose body is deteriorating before their very eyes, they are unable to breathe, and yet their mind is totally alert! Or a mother or father, or grandmother or grandfather who has lost a child to death or heaven forbid, to abduction, and you don't know where they are, or if they are alright. I would have to be hospitalized, and sedated if that were the case.
Our support group was today and it was very timely for many of us. One lady whose husband's room was right across the hall from Bob's at The Piper died very suddenly and unexpectedly Wednesday. She was at the group to say good-bye, as after you lose your loved one, they ask that you find a grief support group. It brings the reality of the fragility of life very close to home.
I am hunkering down this weekend by the fireplace and read a good book. There is supposed to be an ice storm, but I can relax knowing Bob is well cared for even if I can't traverse the roads to go out to see him. But it still brings to mind the frantic times at the hospital when there was an ice storm and staff couldn't make it in. One of my hats as the night supervisor was to provide staffing for the next shift, and it still gives me nightmares!
One last quote--author unknown. "Faith is not about everything turning out OK. Faith is about being okay no matter how things turn out."
Betty
First of all, I am SAD. No one could love Bob like I love him. (Isn't there a song like that?!) And no one could care for Bob like I could care for him. After all, I am a nurse, and I was giving him 1:1 care. Where else can you get such good staffing ratios?!
Then there is RELIEF. Relief that I was finally able to make the decision and be at peace with it. When both the Executive Director of The Piper and the Director of Nurses came to our home to evaluate Bob, I was so impressed. First of all, the DON had been a nursing assistant at SMMC. She worked days, so I didn't know her, but her now- husband worked nights as an RN on telemetry and I knew him well, and loved him! I am happy for them, and so proud of her! There is so much I like about The Piper. On weekends there is as much staff as on weekdays. The mealtimes are flexible, and if the resident doesn't want to eat when it is served, the staff will serve them later. If they don't like what is on the menu, they will fix them something different. (They have a whole list of Bob's favorite foods that they asked me to provide). They also allow pets. I would say that this is mostly on the assisted living floors, but there have been some on the dementia units, and the staff will also care for them for an extra fee.
Then there is PEACE. I may be wrong, but I don't think I will feel the guilt that so many people voice in the support groups. When they get rested up, they look back and think they could have gone on longer. Bob is going to have physical therapy, and I think that will do him a world of good. Maybe it will give him better balance and better strength so he won't fall, as he has fallen a couple of times since being there. I was right by his side the last 3 days, or he would have fallen more at home.
When I have been out to see Bob, he seems very content. He has never asked to come home with me, and that makes it easier. When I tell him I am leaving, he always says "Please be careful."
Then I am discomBOBulated! I can only compare this to when we have lost a beloved pet. You look at their favorite chair, fully expecting to see them curled up in it. Or you look behind you, fully expecting to see them following you. I have thought I have heard him breathing softly in the bed beside me. I am sure this will get better with time, although you miss them so. But I think of all the women that I know, and those that I don't know, who live alone for whatever reason. Even if you divorce and are happy to get the ******out, there must be a sense of loss. I am having to get used to cooking for one. I have never cooked for one before! The more people I am cooking for, the happier I am! But maybe it will help me lose a few unwanted pounds! So I am having to get used to a new "normal". But Erma Bombeck once said that "normal" is a setting on your washing machine!
I imagine that some people feel PITY for me. I know I did years ago when someone we knew was in my situation (little knowing that it would be my journey someday). But I am here to tell you there are worse things. Just look at the ALS (Lou Gehrig's disease) patients whose body is deteriorating before their very eyes, they are unable to breathe, and yet their mind is totally alert! Or a mother or father, or grandmother or grandfather who has lost a child to death or heaven forbid, to abduction, and you don't know where they are, or if they are alright. I would have to be hospitalized, and sedated if that were the case.
Our support group was today and it was very timely for many of us. One lady whose husband's room was right across the hall from Bob's at The Piper died very suddenly and unexpectedly Wednesday. She was at the group to say good-bye, as after you lose your loved one, they ask that you find a grief support group. It brings the reality of the fragility of life very close to home.
I am hunkering down this weekend by the fireplace and read a good book. There is supposed to be an ice storm, but I can relax knowing Bob is well cared for even if I can't traverse the roads to go out to see him. But it still brings to mind the frantic times at the hospital when there was an ice storm and staff couldn't make it in. One of my hats as the night supervisor was to provide staffing for the next shift, and it still gives me nightmares!
One last quote--author unknown. "Faith is not about everything turning out OK. Faith is about being okay no matter how things turn out."
Betty
Friday, January 6, 2017
When I wrote the December post we were getting ready to go to St. Louis for Christmas, to our daughter Valerie and her family's home. Ron brought his three children up from Chattanooga, TN. We had a wonderful time, Bob did very well, and we will have memories to cherish. Thanks to the Strickers for hosting everyone, and also for Tad's mother Karon Scott (who lives across the street) for providing some of the beds! During that time we were at the highest point of the roller coaster named Alzheimer's.
When we got home, as is so often the case, the roller coaster took the deepest plunge down the track.
Before we went to St. Louis I could still go to lunch with friends, get groceries, run errands, and leave Bob in the house alone and he was always fine when I got back. But it went from that status to where I wasn't able to let him out of my sight. He would open the front door and go out "just to see what is out there." One night we were invited to some friend's home for dinner. We had been sitting on the couch together. I told him we were going over to Gail and Harry's for dinner, but I had to go upstairs and comb my hair. When I got back 10 minutes later he was gone. The light to the basement was on, so I ran down there, and here he was, sitting on the rowing machine. It has been months since he has been in the basement and even more months since he has been on the rowing machine! I had been struggling to get him UP stairs, and here he went DOWN all by himself!
From the very onset of the disease, even before he would admit he had it, he made me promise not to take him out in public if he would do something that normally would embarrass him. I think we are already past that point. And my criteria from the first has been that when I could no longer get outside the house, that would be a sign that I needed to do something. I had gone to a support group a couple of years ago at a facility, but stopped as it was mainly for resident's families. But one question I asked before I quit going was "How do you know it is time for placement?" Everyone's answer immediately was, "Oh, you will know!" So I had been praying for a sign, but all of a sudden signs started popping up all over the place. It came down to basic safety issues. He was GOING to fall down the stairs, it was just a matter of WHEN.
I am so glad I had done due diligence and had been looking at many places. So I called one that had really impressed me. I prayed that if this was the right facility that things would just fall into place. And another sign was that they had called me out of the blue and asked if there was anything they could do to help me get through the holidays. I told them we were going out of town, but to call back after the first of the year. Well, it ended up that I called them before the first of the year. And everything went amazing smooth. It is called The Piper, and I had only heard good things about it, and had toured it twice and went to a seminar there once. For those of you that live locally, it is out near the Legends, and will be open 2 years this coming June. It is 2 floors of assisted living and one floor of dementia care. Another consideration was that they are almost full, and I didn't want to be on a waiting list, as is the case with a lot of other area facilities. One thing I was concerned about was the drive. It is 8.2 miles from our house, but it only takes about 12 minutes as it is mostly interstate.
So today was admission day. Yesterday after the director called and said they had the needed doctor's
order and I knew it would happen for sure, we had lunch and then I put Bob in the recliner (which he normally can't get out of by himself) for his afternoon nap. I was upstairs packing his things, pausing every once in awhile to wipe my eyes, as water kept running out of them. All of a sudden, I heard this clicking noise and I about jumped out of my skin. I whirled around and there was Bob, on his hands and knees (as he had crawled up the stairs) and he was clicking his tongue at me to get my attention. He was grinning like a Cheshire cat! He has been clicking his tongue at me for quite awhile, and I find it sweet, and much less annoying than patients who would snap their fingers at me!
In my November post I said that there were a lot of "firsts" in my life when I took a trip to Tennessee. The first time to stay in a hotel alone. The first time to eat at a restaurant alone. Now there were many "lasts". Last night was our last night to sleep together. This morning was our last time to have breakfast in our home together (I fixed his favorite breakfast!) We left about 10:30 this morning after I got the car all packed. I am so thankful my dear friend Arlene Magruder went with me. She was able to stay with Bob while I filled out tons of paperwork. But again, I was so impressed with how thorough they were, and seemed genuinely committed to be able to do their best to care for Bob. Everyone was so friendly and made us all feel at ease. The facility has high ceilings, and a sunroom, so natural light streams in, and it has a calming effect. On me at least! Arlene and I then left and ate at Olive Garden. I of course got my ultimate comfort food--spaghetti. Valerie and family are coming tomorrow as well, and that will help keep me busy!
I am now home alone, and am really tired since Bob got up at 3am this morning. So I will leave you with this quote. It is by Mara Botonis in "When caring takes courage". And thank you to Amy Moore (who just lost her mother to Alzheimer's) for sharing it. The message is for me tonight.
"Alzheimer's may have changed the LOVE that you share, but it can't ever, will never, have the power to completely erase it."
Thank you all for the support and love you all have given me.
Betty
When we got home, as is so often the case, the roller coaster took the deepest plunge down the track.
Before we went to St. Louis I could still go to lunch with friends, get groceries, run errands, and leave Bob in the house alone and he was always fine when I got back. But it went from that status to where I wasn't able to let him out of my sight. He would open the front door and go out "just to see what is out there." One night we were invited to some friend's home for dinner. We had been sitting on the couch together. I told him we were going over to Gail and Harry's for dinner, but I had to go upstairs and comb my hair. When I got back 10 minutes later he was gone. The light to the basement was on, so I ran down there, and here he was, sitting on the rowing machine. It has been months since he has been in the basement and even more months since he has been on the rowing machine! I had been struggling to get him UP stairs, and here he went DOWN all by himself!
From the very onset of the disease, even before he would admit he had it, he made me promise not to take him out in public if he would do something that normally would embarrass him. I think we are already past that point. And my criteria from the first has been that when I could no longer get outside the house, that would be a sign that I needed to do something. I had gone to a support group a couple of years ago at a facility, but stopped as it was mainly for resident's families. But one question I asked before I quit going was "How do you know it is time for placement?" Everyone's answer immediately was, "Oh, you will know!" So I had been praying for a sign, but all of a sudden signs started popping up all over the place. It came down to basic safety issues. He was GOING to fall down the stairs, it was just a matter of WHEN.
I am so glad I had done due diligence and had been looking at many places. So I called one that had really impressed me. I prayed that if this was the right facility that things would just fall into place. And another sign was that they had called me out of the blue and asked if there was anything they could do to help me get through the holidays. I told them we were going out of town, but to call back after the first of the year. Well, it ended up that I called them before the first of the year. And everything went amazing smooth. It is called The Piper, and I had only heard good things about it, and had toured it twice and went to a seminar there once. For those of you that live locally, it is out near the Legends, and will be open 2 years this coming June. It is 2 floors of assisted living and one floor of dementia care. Another consideration was that they are almost full, and I didn't want to be on a waiting list, as is the case with a lot of other area facilities. One thing I was concerned about was the drive. It is 8.2 miles from our house, but it only takes about 12 minutes as it is mostly interstate.
So today was admission day. Yesterday after the director called and said they had the needed doctor's
order and I knew it would happen for sure, we had lunch and then I put Bob in the recliner (which he normally can't get out of by himself) for his afternoon nap. I was upstairs packing his things, pausing every once in awhile to wipe my eyes, as water kept running out of them. All of a sudden, I heard this clicking noise and I about jumped out of my skin. I whirled around and there was Bob, on his hands and knees (as he had crawled up the stairs) and he was clicking his tongue at me to get my attention. He was grinning like a Cheshire cat! He has been clicking his tongue at me for quite awhile, and I find it sweet, and much less annoying than patients who would snap their fingers at me!
In my November post I said that there were a lot of "firsts" in my life when I took a trip to Tennessee. The first time to stay in a hotel alone. The first time to eat at a restaurant alone. Now there were many "lasts". Last night was our last night to sleep together. This morning was our last time to have breakfast in our home together (I fixed his favorite breakfast!) We left about 10:30 this morning after I got the car all packed. I am so thankful my dear friend Arlene Magruder went with me. She was able to stay with Bob while I filled out tons of paperwork. But again, I was so impressed with how thorough they were, and seemed genuinely committed to be able to do their best to care for Bob. Everyone was so friendly and made us all feel at ease. The facility has high ceilings, and a sunroom, so natural light streams in, and it has a calming effect. On me at least! Arlene and I then left and ate at Olive Garden. I of course got my ultimate comfort food--spaghetti. Valerie and family are coming tomorrow as well, and that will help keep me busy!
I am now home alone, and am really tired since Bob got up at 3am this morning. So I will leave you with this quote. It is by Mara Botonis in "When caring takes courage". And thank you to Amy Moore (who just lost her mother to Alzheimer's) for sharing it. The message is for me tonight.
"Alzheimer's may have changed the LOVE that you share, but it can't ever, will never, have the power to completely erase it."
Thank you all for the support and love you all have given me.
Betty
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