Happy Groundhog day! I understand that he saw his shadow, so there will be 6 more weeks of winter. But as I saw on Facebook, he is a rodent, not a meteorologist. I intensely dislike winter and would love to go back to sleep and wake up and find that it was Spring! I am well, but trying to dodge these cold and flu germs.
Bob is doing well also. His mobility is decreasing, and hospice brought in a lift to help transfer him. I know he has the strength to stand, but when they ask him to, his brain just won't connect with his muscles to perform the function. I certainly don't want the staff to hurt their backs lifting him. So far, he hasn't had the flu. One day when I was out to see him I noticed what sounded like the beginnings of bronchitis. He was coughing, and there was audible wheezing that anyone could hear without a stethoscope. I went home and spent a sleepless night going through different scenarios. If he got worse, would I ask for antibiotics? I finally came to the conclusion that I would allow oral (p.o.) antibiotics, maybe intramuscular (IM) and certainly not intravenous (IV) as that would entail going to the hospital where the germs are even more lethal. It ended up that he recovered on his own, and I didn't have to make that decision. We discussed this at the Alzheimer's support group which happened to be right at the same time (a wonderful blessing). Another lady in the group was faced with the same decision. So saying, I am well aware that the flu could sweep through the patient population at The Piper, even though they all had flu shots, and in their compromised state, many might succumb. The decision would be made for me, as antibiotics would not help. There is a sweet resident there that I really love. She went to the hospital for pneumonia, came back, and I thought she was rallying to recover. But when I saw he yesterday, she was obviously declining, and it breaks my heart. I know hospice would have helped walk and talk me through it and be there for me if it happens again, so that is comforting to know. The timing might weigh in on the decision, but is there ever a good time?
My daughter sent the following to me, and I hope you will read it carefully, and maybe it will help you in difficult choices you may have to make someday. It is written by Kimberly Callinan, who is chief program officer of Compassion and Choices, the nation's largest end-of-life choice advocacy organization. Also by Brad Stuart who has been an internal medicine, palliative care and hospice physician for almost 40 years. They wrote this for American Forum.
5 questions to ask about end-of-life care:
By 2030, and estimated 72 million American, one-fifth of the U.S. population, will by 65 or older, according to Kaiser Health News. Yet while three out of four doctors believe it's their responsibility to talk with patient about their end-of-life care goals, only one out of seven actually held these conversations, according to a recent survey by the John A. Hartford Foundation, California Health Care Foundation and Cambia Foundation.
The reason? Nearly half of doctors said they don't know what to say, and less than a third are trained to talk with patients and their families about the end of life. When doctors don't know how to balance their patients' quality of life with its length, it's only too easy to resort to tests and treatments. As a result, many people spend their final days shuttling in and out of the hospital instead of enjoying all the precious moments they can.
Patients can change this dynamic just by asking the right questions. This gives their doctors permission to talk about the benefits and risks of treatment and outline all care options including hospice. Only then can doctor and patient make treatment decisions together to match the patient's personal goals, priorities and values.
These questions cover five major areas:
MY CONDITION: Is my disease curable? Will it shorten my life? By how much? What's likely to happen as it progresses?
BENEFITS OF TREATMENT: How will this treatment help my condition? Will I be cured or will the disease come back? What are the odds either way? Will treatment return me to normal function?
BURDENS OF TREATMENT: Does this treatment have side effects? What will my quality of life be like during treatment? What activities will I have to give up? How much time will I spend in the hospital or going to doctors' appointments?
OTHER TREATMENT OPTIONS: What are my other treatment options? What happens if we focus on slowing the disease without going for a cure? Or focus on comfort rather than fighting the disease? Or do nothing? What about hospice?
DOCTORS PERSONAL VIEW: A 2014 study by physicians affiliated with the Stanford University School of Medicine, Stanford Hospital and Clinics, and Veterans Affair Palo Alto Health Care System showed that almost 90 percent of doctors would choose to forgo aggressive treatment at the end of their own lives. Most would want to die gently with few interventions. So patients should also ask their doctors: "What would you do if you had my diagnosis and prognosis?"
By asking these questions early in the course of illness, patients can empower themselves to write their own end-of-life story and have more control over their last years, months and days of life.
*****************************
I wish families would read this as well as the patients. People's decisions will be different, depending on their age, and certainly dependent on the ages of their children. I have seen patients opt for treatment to get to a life celebration, such as a wedding, but then discontinue treatment. I wish that families would allow their loved one to make the decision, and then respect that decision. End of life often brings on family conflicts that have been buried for years and should certainly not be brought up at this time. They spend precious time fighting instead of loving. Focus on the memories, the good times, and give yourselves that gift.
The other day I was cleaning out a drawer. I came across a note on an index card from Bob that he had written and put on the counter for me to read when I came home from working the night shift. I am sure the house was spotless, as he would clean the house thoroughly before going to work. It read:
Good Morning Betty. I love you. Have a good rest. Love, Rob xxxooo
That is the man I know and love! I am so glad he is content now, and looks like he is at peace.
Betty
Friday, February 2, 2018
Saturday, December 9, 2017
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
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, 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!
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