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
Thursday, February 2, 2017
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
Monday, December 12, 2016
This month has been both a month of sweet times and of challenges. The sweet time was this morning. For the past month Bob has been referring to himself as "he" and to me as "she". He gets the pronouns right for the most part. This morning he patted my leg and said "she works hard and he loves she." Aww! It is particularly poignant as "he" has threatened many times to fire "she" but I guess he has reconsidered! The challenges have been with the increasing incontinence. This is not what I would normally put in a Christmas post, but if it helps someone dealing with the same thing it is worth it! The Depends had gotten to the point where, when they were wet, gave off an odor I could not tolerate anymore. So I started looking for something else. I went to Sam's and found their premium brand with an odor control strip in them, so I bought them. I tried two of them and they leaked badly (anyone need 86 diapers, from a package of 88 that are in the trunk of my car waiting to be returned?) I knew Attends were good but had been avoiding them as I thought they all had tabs. But I went online (they are only sold online) and found some pull-up Attends and they have been excellent and have solved most of the problems. After doing many loads of washing!
I am going to confide at this point that Christmas is not my favorite holiday. I think of all the people who will not have a Merry Christmas. Those who have lost loved ones, who are estranged for whatever reason from those they love, for those who don't even have money to buy their children presents, and the list could go on and on. The perception that everything is supposed to be merry and bright only adds to the loneliness and depression. And don't get me started on the gift giving. When our children were little it was Cabbage Patch dolls that everyone fought over in the department stores. This year it is Hatchimals at up to $200 a pop. I read a post recently on Facebook from Carrie, a young new graduate nurse at the hospital when I was working. She is older now, as we all are, and has children of her own. She tells how she drove by a homeless man, not begging, but just sitting by the side of the road. She couldn't get him out of her mind, so she went to Target and bought him some warm socks and gloves, and a big steaming hot cup of coffee and took them back to him. She said when she left, he was crying. Carrie looks like an angel anyway with long blond hair, and I am sure he thought an angel had visited him that day. She didn't say if her children were in the car, but I hope they were, so they could have seen that is it truly "more blessed to give than to receive."
Now I am going to get on another soapbox. I recently read the book "The Emotional Journey of the Alzheimer's Family" by Robert B. Santulli and Kesstan Blandin. The following are some of the highlights presented in the book: 1. Focus on the present, as the past no longer can be recalled and the future is to abstract a concept to consider. Being present in the moment is a positive tool to promote happiness. And along the same line: 2. Be mindful and pay full attention to the moment at hand. I want to interject here about both the most valuable and yet most cursed thing of our lives--cell phones. Please, please this season, put aside your cell phone for just awhile and relate to your loved ones in the present moment. These moments are so fleeting, but can be stored later as such precious memories. This plea is for both young and adults alike to heed! 3. They talk about relaxation techniques--visualization, meditation, and prayer. Diane, the leader of my yoga class, is introducing prayer breathing for this Advent season. Last week the prayer was "Peace of Christ" on the inhale, and "rest in Me" on the exhale. It is a wonderful way to fall asleep at night!
Bob and I are going to our daughter Valerie's house in St. Louis for Christmas with her and her family. Our son Ron is bringing his children from Chattanooga to meet us there and see Pop Pop and have Christmas together. We are going the Friday before Christmas and then everyone is returning home Monday. I hope Bob can do well with being out of his routine, in a different house, and the commotion that we hopefully can keep to a minimum!
Peace to all of you this Christmas!
We love you!
"He" and "She"
I am going to confide at this point that Christmas is not my favorite holiday. I think of all the people who will not have a Merry Christmas. Those who have lost loved ones, who are estranged for whatever reason from those they love, for those who don't even have money to buy their children presents, and the list could go on and on. The perception that everything is supposed to be merry and bright only adds to the loneliness and depression. And don't get me started on the gift giving. When our children were little it was Cabbage Patch dolls that everyone fought over in the department stores. This year it is Hatchimals at up to $200 a pop. I read a post recently on Facebook from Carrie, a young new graduate nurse at the hospital when I was working. She is older now, as we all are, and has children of her own. She tells how she drove by a homeless man, not begging, but just sitting by the side of the road. She couldn't get him out of her mind, so she went to Target and bought him some warm socks and gloves, and a big steaming hot cup of coffee and took them back to him. She said when she left, he was crying. Carrie looks like an angel anyway with long blond hair, and I am sure he thought an angel had visited him that day. She didn't say if her children were in the car, but I hope they were, so they could have seen that is it truly "more blessed to give than to receive."
Now I am going to get on another soapbox. I recently read the book "The Emotional Journey of the Alzheimer's Family" by Robert B. Santulli and Kesstan Blandin. The following are some of the highlights presented in the book: 1. Focus on the present, as the past no longer can be recalled and the future is to abstract a concept to consider. Being present in the moment is a positive tool to promote happiness. And along the same line: 2. Be mindful and pay full attention to the moment at hand. I want to interject here about both the most valuable and yet most cursed thing of our lives--cell phones. Please, please this season, put aside your cell phone for just awhile and relate to your loved ones in the present moment. These moments are so fleeting, but can be stored later as such precious memories. This plea is for both young and adults alike to heed! 3. They talk about relaxation techniques--visualization, meditation, and prayer. Diane, the leader of my yoga class, is introducing prayer breathing for this Advent season. Last week the prayer was "Peace of Christ" on the inhale, and "rest in Me" on the exhale. It is a wonderful way to fall asleep at night!
Bob and I are going to our daughter Valerie's house in St. Louis for Christmas with her and her family. Our son Ron is bringing his children from Chattanooga to meet us there and see Pop Pop and have Christmas together. We are going the Friday before Christmas and then everyone is returning home Monday. I hope Bob can do well with being out of his routine, in a different house, and the commotion that we hopefully can keep to a minimum!
Peace to all of you this Christmas!
We love you!
"He" and "She"
Sunday, November 20, 2016
In my last post, I left off where I was leaving Bob in respite care and traveling to see the grandkids in St. Louis and Nashville. There were many occasions to celebrate, and many "firsts" on this trip. The occasions to celebrate were our son Ron's 50th birthday, and we went on the General Jackson showboat in Nashville and enjoyed dinner and the show on the boat. Then it was on to Halloween in Chattanooga, and the grandkids there like Halloween as much as I do! I was a big witch, and 7 year old Libby was a little witch, complete with a black tutu her sister Emme made for her. The next day was Emme's birthday--#13. I now have 2 teenage grandchildren as Nate is 15, and Jaden is fast approaching teenage years. Lord, help us! It was quite unbelievable that we have a 50 year old son....The "firsts" on this trip were that I stayed in a hotel room by myself for the first time, and ate at a restaurant by myself for the first time. It was weird asking for a table for one, but it was an outdoor restaurant in a gorgeous setting at Rock City where I could take pictures, so I was very content. When I came home, I stayed one night in our big creaking home by myself for the first time in many years. I was suddenly aware of the thought that this must be like being a widow. I have many friends who are, I am sure that no matter how emotionally prepared you think you are, it must be much different when it is a reality. But they are surviving, and I know I will as well. But in the meantime, I am going to enjoy the time I have left with Bob.
I was a little more apprehensive about leaving Bob this time, as the unit he is usually in for day stay, and where they know him, was full, so he had to be on another wing. But they were going to have Larry, who is so good with him, come over from the other wing and do his cares. I had taken Bob in on a Sunday morning, and the lady at the front desk showed us to his room, which wasn't ready, bed unmade, etc. They assured me they would find the linen, and make the bed, so I unpacked, and then took Bob out to the dining/community area where there were several staff around. I introduced myself, and said I was Bob's wife, and this was Bob, and he was going to be here for respite care. I was met only by grunts. I settled him in an easy chair, and tried again. Again, only grunts. It would have meant so much if someone had smiled, come over and greeted me, and welcomed Bob. It didn't happen, so I gave Bob a kiss, told him lunch would be soon, and I would be back in a few days, and then I left. I walked out the front door and who should I run into but Kathy Nealey, one of my many favorite night shift workers at the hospital. Her mother had been at Brookdale. She gave me a big hug, and I burst into tears. The director came out at that moment waving a paper I had forgotten to sign, so she saw me crying. I determined we would have a little chat when I was not so emotional! When I got back, I saw her in her office, and since her door is always open, I stopped in, and asked how Bob handled the stay. I told her why I was crying the day I left, and I could tell she was embarrassed. Then I told her that I had taught a class at Shawnee Mission Medical Center, called "The Spirit of Caring". Every employee had to take the class, so it was an ongoing thing for quite awhile. I told her that now that I had a loved one receiving care, and that the shoe was one the other foot, I would love to come and just give a talk to the employees. I told her I had worked in Labor and Delivery for 3 years before I had a baby, and I loved my job and gave the patients excellent care. But there was another factor after I had a baby myself, and that was empathy. After that, I was able to give even better care! I don't know if that talk will happen, but this unit just didn't seem as friendly as the previous one he was in. Anyway, the director and I started laughing as she related a story about Bob. One day she saw him racing by her open door. He was pushing his friend (another resident also named Larry) in a wheelchair, and Larry had a panic-stricken look on his face. Bob was pushing him very fast, and Larry's shoes were catching on the carpet. The director called out to Bob, and he turned long enough to say "F*** you" and kept on going. She ran after Bob and told him that he was missing a committee meeting, and he stopped immediately and said "Really?" She was able to divert him away from Larry, and she took him down to the library!
The afternoon I got back they called from Brookdale, and said Bob had fallen. I asked if I needed to come, as I had planned to rest that night and pick him up the next morning. They said no, he got right up, and seemed fine. So I went home and went to bed and slept for 11 hours. If the bogey men came to get me, I wouldn't have known about it! I brought him home, and he immediately fell asleep in the chair. He seemed so weak and unsteady. He fell twice in the next 2 days, once on the garage floor. I even got him a walker, but he walked around the house holding it over his head with one hand! But it has been over a week now, and he has slept a lot of the time, one morning till 10am which is unheard of! They said he had not slept much there, and wouldn't usually go to bed (which I still have trouble getting him to bed as well), so I think he was just exhausted. He hasn't fallen again, and seems to have more strength. The walker is in the garage. Many thanks to friends Harry and Gail Janke, Drew and Joanne Bodner and Douglas Elsey for going to check on him while he was in Brookdale and eased my mind by giving me reports.
As we approach the Thanksgiving holiday I would like to leave you with a quote from glmidailyinspiration@gmail.com. This email comes every weekday, and I enjoy it. I will have to admit I am having to work diligently on believing this quote, but I am trying to get to THAT PLACE!
"There IS something miraculous which takes place when we begin to view everything that comes
into our lives with a genuine sense of gratitude and appreciation. Things that may have previously appeared to us as insurmountable challenges, can now be seen as the opportunities they truly are, rather than problems. Instead of approaching life with a sense of quiet desperation or dread, we become alive with anticipation of what each new day may hold, bringing inspiration and a sense of peace and calm throughout. IN THAT PLACE a natural rhythm can be found, where time, chance and circumstance all begin to flow together as naturally as breath itself."
And my favorite Bible verse--"Bless (affectionately, gratefully praise) the Lord, O my soul; and all that is (deepest) within me, bless His holy name! Bless (affectionately, gratefully praise) the Lord, O my soul, and forget not all His benefits---Who forgives (every one of) all your iniquities, Who heals (each one of) all your diseases. Psalm 103:1-3 (Amp)
Happy Thanksgiving!
Betty
I was a little more apprehensive about leaving Bob this time, as the unit he is usually in for day stay, and where they know him, was full, so he had to be on another wing. But they were going to have Larry, who is so good with him, come over from the other wing and do his cares. I had taken Bob in on a Sunday morning, and the lady at the front desk showed us to his room, which wasn't ready, bed unmade, etc. They assured me they would find the linen, and make the bed, so I unpacked, and then took Bob out to the dining/community area where there were several staff around. I introduced myself, and said I was Bob's wife, and this was Bob, and he was going to be here for respite care. I was met only by grunts. I settled him in an easy chair, and tried again. Again, only grunts. It would have meant so much if someone had smiled, come over and greeted me, and welcomed Bob. It didn't happen, so I gave Bob a kiss, told him lunch would be soon, and I would be back in a few days, and then I left. I walked out the front door and who should I run into but Kathy Nealey, one of my many favorite night shift workers at the hospital. Her mother had been at Brookdale. She gave me a big hug, and I burst into tears. The director came out at that moment waving a paper I had forgotten to sign, so she saw me crying. I determined we would have a little chat when I was not so emotional! When I got back, I saw her in her office, and since her door is always open, I stopped in, and asked how Bob handled the stay. I told her why I was crying the day I left, and I could tell she was embarrassed. Then I told her that I had taught a class at Shawnee Mission Medical Center, called "The Spirit of Caring". Every employee had to take the class, so it was an ongoing thing for quite awhile. I told her that now that I had a loved one receiving care, and that the shoe was one the other foot, I would love to come and just give a talk to the employees. I told her I had worked in Labor and Delivery for 3 years before I had a baby, and I loved my job and gave the patients excellent care. But there was another factor after I had a baby myself, and that was empathy. After that, I was able to give even better care! I don't know if that talk will happen, but this unit just didn't seem as friendly as the previous one he was in. Anyway, the director and I started laughing as she related a story about Bob. One day she saw him racing by her open door. He was pushing his friend (another resident also named Larry) in a wheelchair, and Larry had a panic-stricken look on his face. Bob was pushing him very fast, and Larry's shoes were catching on the carpet. The director called out to Bob, and he turned long enough to say "F*** you" and kept on going. She ran after Bob and told him that he was missing a committee meeting, and he stopped immediately and said "Really?" She was able to divert him away from Larry, and she took him down to the library!
The afternoon I got back they called from Brookdale, and said Bob had fallen. I asked if I needed to come, as I had planned to rest that night and pick him up the next morning. They said no, he got right up, and seemed fine. So I went home and went to bed and slept for 11 hours. If the bogey men came to get me, I wouldn't have known about it! I brought him home, and he immediately fell asleep in the chair. He seemed so weak and unsteady. He fell twice in the next 2 days, once on the garage floor. I even got him a walker, but he walked around the house holding it over his head with one hand! But it has been over a week now, and he has slept a lot of the time, one morning till 10am which is unheard of! They said he had not slept much there, and wouldn't usually go to bed (which I still have trouble getting him to bed as well), so I think he was just exhausted. He hasn't fallen again, and seems to have more strength. The walker is in the garage. Many thanks to friends Harry and Gail Janke, Drew and Joanne Bodner and Douglas Elsey for going to check on him while he was in Brookdale and eased my mind by giving me reports.
As we approach the Thanksgiving holiday I would like to leave you with a quote from glmidailyinspiration@gmail.com. This email comes every weekday, and I enjoy it. I will have to admit I am having to work diligently on believing this quote, but I am trying to get to THAT PLACE!
"There IS something miraculous which takes place when we begin to view everything that comes
into our lives with a genuine sense of gratitude and appreciation. Things that may have previously appeared to us as insurmountable challenges, can now be seen as the opportunities they truly are, rather than problems. Instead of approaching life with a sense of quiet desperation or dread, we become alive with anticipation of what each new day may hold, bringing inspiration and a sense of peace and calm throughout. IN THAT PLACE a natural rhythm can be found, where time, chance and circumstance all begin to flow together as naturally as breath itself."
And my favorite Bible verse--"Bless (affectionately, gratefully praise) the Lord, O my soul; and all that is (deepest) within me, bless His holy name! Bless (affectionately, gratefully praise) the Lord, O my soul, and forget not all His benefits---Who forgives (every one of) all your iniquities, Who heals (each one of) all your diseases. Psalm 103:1-3 (Amp)
Happy Thanksgiving!
Betty
Saturday, October 8, 2016
It is with a heavy heart that I write this blog. It has been a hard month. Two dear friends have passed away (one last evening) and then the husband of another dear friend passed away from Lewy Body dementia. When one gets to be a certain age, you expect to start losing your friends. But both girlfriends were younger than I, and left us to soon, and too suddenly. I am glad their suffering is over, but my heart aches for those left behind. And it brings it quite close to home with the dear friend that lost her husband to Lewy Body dementia. Lewy Body dementia progresses much faster and is more dramatic in its presentation than Alzheimer's dementia. Mobility is affected more. On the other hand, Alzheimer's dementia and frontal lobe dementia progress more slowly and steadily. There is also vascular dementia, where the person experiences small strokes, that may lead to a larger stroke.
Also this month has been the month of doctors for Bob. We saw the neurologist and Bob was given the MMSE exam that they give during every visit. We had not been to see the neurologist for a year, as he said there was no need to come. Last year Bob's score on the MMSE was 12. This year it was 3. (30 is the top score, and Bob started out at 24 nine years ago.) I don't think you need me to help interpret this score. The neurologist said he would always be there if we needed him, but that his job was finished, and we didn't need to return. He said to stop the Aricept, as it obviously wasn't helping at this point, but I could start it again if things drastically declined after stopping it. He was so kind, and asked how I was doing, and I told him I really appreciated the care and concern he had given Bob over the 9 years Bob has been his patient. He said the primary care doctor could handle things from this point on. We just happened to have an appointment with her the next day. I asked her to please check his urine for an infection, as it is so strong smelling. Urinary tract infections can really mess with an elderly person's brain. When my mother used to start acting weird, I always knew she had a UTI, even though she was not aware she even had it. I wanted to be sure that an infection was not the cause of the rapid decline. But the urinalysis came back negative for infection. His feet have also been swelling, and the doctor looked up the side effects for the respiradone he is on to help him stay calm, and swelling of the feet is one of them. Do we want to stop the medication? NO! So I just try to keep his feet elevated as much as possible. We saw the dental hygienist, and she did a good job of scrubbing his teeth. She said the teeth looked good despite him not brushing his teeth as often as he should. Next was the eye doctor--cataracts progressing, but he said it was up to us if we wanted to have them removed. Since he is not driving or reading, I said no, since all the eyedrops needed for cataract surgery would be a nightmare to administer....Also this eye doctor is retiring after taking care of Bob's eyes for 40 years! Again, I thanked him for all his years of service!
Bob asked me the other day "Don't I have some idiosyncrasies that are hard for you to put up with?" Bless his heart! A few years ago, I could have said no, no more than anyone else, myself included!
But now the "idiosyncrasies" are more in number, vary from day to day, disappear and return, and happen when I least expect it, just to keep things interesting and to keep me off balance! I told this on Facebook, but I must relay it here for those of you not on Facebook. I was helping him get ready for bed one night, which is a complicated routine at best. Finally I had him ready and told him "Come on, let me tuck you in bed." With a twinkle in his eye he said "*uck me in bed?" NO, NO--TUCK you in bed!
A friend asked me recently if it wasn't hard having patience every day, day after day. YES! But I am going to make a confession. It was really difficult about a year ago, especially when he was in the aggressive stage, to keep my cool. He wasn't that bad yet, and I kept thinking that on some level, he knew enough of what he was doing, that he should be more compliant and cooperative. And I would get upset when he wasn't, which was a good share of the time. But as things have progressed, I can see now, that he didn't have that capacity. Now that his mental status is worse, I can accept things more the way they are, and know he can't help it, and that helps me care for him better. Also, he is usually more agreeable now and is happy, which helps immensely. I just pray this status continues. I can still leave him at home, and he doesn't wander, but more and more I see that ending, as he is starting to get into things while I am gone, and especially hides things. The other day I looked for a pair of pants and a belt for an hour. I could NOT understand how they could just disappear into thin air. It was revealed a short time later. He had 2 pairs of pants on, and 2 belts on. How did he do that??? He is gaining some weight from inactivity, and gets mad at me if I can't get his belt fastened. I try to tell him taking off one of the 5 shirts would help, but he doesn't comprehend that. So I bought a larger belt....Bob has also developed quite a significant tremor of his hands, and the neurologist says it is quite common for people in the latter stages of Alzheimer's to develop a Parkinsonian-like tremor. He can still feed himself, but there may come a time he would have to be fed because of the tremors.
I am going to take another break at the end of this month and drive to St. Louis and Chattanooga to see grandkids. I will put Bob in respite care again for the 2 weeks I am gone. It really helps my morale to have something to look forward to, and a trip is my ultimate pleasure! It really feels different to be traveling by myself, but I will get used to it. Some people have said I need to get a blow up doll to sit in the passenger's seat. That would help me out in the HOV lanes! I am coming back election day. Lord help us! I will keep a full tank of gas in case the Russians try to sabotage the election and blow something up! Seriously, pray for this country that God will be in charge.
Until next time,
Betty
Also this month has been the month of doctors for Bob. We saw the neurologist and Bob was given the MMSE exam that they give during every visit. We had not been to see the neurologist for a year, as he said there was no need to come. Last year Bob's score on the MMSE was 12. This year it was 3. (30 is the top score, and Bob started out at 24 nine years ago.) I don't think you need me to help interpret this score. The neurologist said he would always be there if we needed him, but that his job was finished, and we didn't need to return. He said to stop the Aricept, as it obviously wasn't helping at this point, but I could start it again if things drastically declined after stopping it. He was so kind, and asked how I was doing, and I told him I really appreciated the care and concern he had given Bob over the 9 years Bob has been his patient. He said the primary care doctor could handle things from this point on. We just happened to have an appointment with her the next day. I asked her to please check his urine for an infection, as it is so strong smelling. Urinary tract infections can really mess with an elderly person's brain. When my mother used to start acting weird, I always knew she had a UTI, even though she was not aware she even had it. I wanted to be sure that an infection was not the cause of the rapid decline. But the urinalysis came back negative for infection. His feet have also been swelling, and the doctor looked up the side effects for the respiradone he is on to help him stay calm, and swelling of the feet is one of them. Do we want to stop the medication? NO! So I just try to keep his feet elevated as much as possible. We saw the dental hygienist, and she did a good job of scrubbing his teeth. She said the teeth looked good despite him not brushing his teeth as often as he should. Next was the eye doctor--cataracts progressing, but he said it was up to us if we wanted to have them removed. Since he is not driving or reading, I said no, since all the eyedrops needed for cataract surgery would be a nightmare to administer....Also this eye doctor is retiring after taking care of Bob's eyes for 40 years! Again, I thanked him for all his years of service!
Bob asked me the other day "Don't I have some idiosyncrasies that are hard for you to put up with?" Bless his heart! A few years ago, I could have said no, no more than anyone else, myself included!
But now the "idiosyncrasies" are more in number, vary from day to day, disappear and return, and happen when I least expect it, just to keep things interesting and to keep me off balance! I told this on Facebook, but I must relay it here for those of you not on Facebook. I was helping him get ready for bed one night, which is a complicated routine at best. Finally I had him ready and told him "Come on, let me tuck you in bed." With a twinkle in his eye he said "*uck me in bed?" NO, NO--TUCK you in bed!
A friend asked me recently if it wasn't hard having patience every day, day after day. YES! But I am going to make a confession. It was really difficult about a year ago, especially when he was in the aggressive stage, to keep my cool. He wasn't that bad yet, and I kept thinking that on some level, he knew enough of what he was doing, that he should be more compliant and cooperative. And I would get upset when he wasn't, which was a good share of the time. But as things have progressed, I can see now, that he didn't have that capacity. Now that his mental status is worse, I can accept things more the way they are, and know he can't help it, and that helps me care for him better. Also, he is usually more agreeable now and is happy, which helps immensely. I just pray this status continues. I can still leave him at home, and he doesn't wander, but more and more I see that ending, as he is starting to get into things while I am gone, and especially hides things. The other day I looked for a pair of pants and a belt for an hour. I could NOT understand how they could just disappear into thin air. It was revealed a short time later. He had 2 pairs of pants on, and 2 belts on. How did he do that??? He is gaining some weight from inactivity, and gets mad at me if I can't get his belt fastened. I try to tell him taking off one of the 5 shirts would help, but he doesn't comprehend that. So I bought a larger belt....Bob has also developed quite a significant tremor of his hands, and the neurologist says it is quite common for people in the latter stages of Alzheimer's to develop a Parkinsonian-like tremor. He can still feed himself, but there may come a time he would have to be fed because of the tremors.
I am going to take another break at the end of this month and drive to St. Louis and Chattanooga to see grandkids. I will put Bob in respite care again for the 2 weeks I am gone. It really helps my morale to have something to look forward to, and a trip is my ultimate pleasure! It really feels different to be traveling by myself, but I will get used to it. Some people have said I need to get a blow up doll to sit in the passenger's seat. That would help me out in the HOV lanes! I am coming back election day. Lord help us! I will keep a full tank of gas in case the Russians try to sabotage the election and blow something up! Seriously, pray for this country that God will be in charge.
Until next time,
Betty
Monday, September 5, 2016
We celebrated our 53rd anniversary September 1. We had dinner at Tatsus in Prairie Village where we have celebrated many anniversaries if we weren't in a far flung corner of the Globe. Bob didn't know it was our anniversary, but I did, and it seemed important to carry on the tradition. Listen in on our "conversation": Me: It is our 53rd anniversary today! Bob: Oh, did you tell Betty? Me: Yes!
Bob: What did she say? Me: She said Happy Anniversary. Bob: Oh, good.
In this post, we are going to be, as Elvis used to say, TCB (taking care of business). It is a subject that people too often don't want to think about, as I think it reminds them of their mortality. So if you will pardon me, I am going to get on my soapbox, and since I don't want to split this important information up, it may be a long post. We had our first will drawn up when the children were little, but then we waited much too long to have it revised. It was revised about 10 years ago, and was much more complicated as it also involved a trust, and of course our circumstances had drastically changed! And as a nurse, I can't stress enough the importance of having a living will, a durable power of attorney for health care, and a durable power of attorney for the financial side. I was on the ethics committee at the hospital and that brought the urgency home even more. I can't tell you how complicated things get when a patient's wishes aren't written down, and the family is trying to decide what they would want done. The most bizarre case was when a patient in renal failure had written in his will that he wanted his body frozen to await the time when a cure would be found, and then he could be unfrozen, and live on. Google "cryonics"--it is being done! Of course there was money involved, and the family was in a huge fight! SO PLEASE! Even if you are 18 years old, get the living will done, and be as specific as you can. And please address organ donation wishes, as well.
Bob was intensely interested in our finances, and I trusted him, and let him take care of all of it. He would voraciously read books and magazines on the subject. I would glance at them, but it wasn't the light reading I wanted after a long night at work. Even the grandkids realized his passion. We were once playing school with 3 year old Emme, and Bob committed some infraction. She, as the teacher, lost patience, and told him to go sit in a corner and read the Wall Street Journal! His idol was Warren Buffet, and we used to tease him about that. He realized when we first started working at the hospital that we needed to save our money, and while I was totally on board, I wasn't sure how we were going to do that. But we did, and he early on started investing with his friend and financial advisor that he trusted. Again, I let him manage all of that, while I managed the household. But when I realized that he could not do it much longer, I started attending their periodic meetings, and tried to understand the intricacies of our financial world.
Early this year we again revised our will. I am going to emphasize again, PLEASE find a good elder care attorney that lives in that space. I know you will ask "How do I find one?" Our financial advisor recommended one, and another good way is word of mouth. The laws vary from state to state, and change constantly, and you need someone that keeps up with that. These past few months have been a steep learning curve, and I will give you a brief synopsis of what I have learned, but you need to find an elder care attorney for your own financial needs and situation. It also helped to have gone through some of this with my mother. If and when I need to put Bob in a facility, the minimum charge now is about $5,000 a month, not covered by Medicare. Then the fee increases as the level of care escalates. That is when we will have to start spending down his IRA! In Missouri, if his IRA would be spent down, I would have to start spending my IRA down for his care. BUT in Kansas, where we thankfully live, my IRA would be protected for my care. There is also something called "distribution of assets," but timing is critical for that, and needs to be tailored to your needs. The next scenario is what if Bob's IRA was spent all the way down. What would happen then? If the facility he was in did not accept Medicaid, when you could no longer pay out of pocket, they would probably give you 3 days to find a place that would accept Medicaid. AND when you were looking at places in a frantic rush, and you told places where you were looking he would be on Medicaid, they would say they had no beds, when they probably did. So you would need to watch and move your loved one to a place that accepts Medicaid a few months before your funds run out, and of course it wouldn't be a pristine facility in most cases. So you would need to choose carefully. The personal out of pocket funds (after division of assets) have to be spent down to $2000 in Kansas before Medicaid will take over. The spouse that is not in the facility can keep the car (buy a new one!), the house, and as I mentioned, in Kansas, can keep their IRA. Social workers are also invaluable resources to help walk you through all of this, as they know the different facilities well. The elder care attorney that I am going forward with charged one fee, and now will have meetings with me every few months to revisit our current status. The only more that would be charged would be if things needed to be revised drastically. I trust him as he was in another area of law practice, but when he saw the huge need in elder care law, he changed his focus, to help people navigate these rough waters. And a friend in the support group has used him for years.
Back to Bob. He is losing mobility, and has fallen, so I try to get him to always use a cane now. The other day he was getting up out of a chair with difficulty, and he started singing "The Old Grey Mare, she ain't what she used to be!" I have no doubt that your prayers have made him mellow again, so I can keep him at home longer. He is sleeping a lot, and I still can get out and he doesn't wander--yet. I guess the statistics are that 60% of Alzheimer's patients wander. I pray he is in the 40% that don't! Yesterday he gave me a sweet caress, and although he called me his daughter when he did it, it will become a treasured memory, if I don't lose MY memory! As Dr. Seuss says, "Sometimes you will never know the value of a moment until it becomes a memory." And sometimes the moments are fleeting!
I hope at least some of this has been helpful to you as you age gracefully!
Betty
Bob: What did she say? Me: She said Happy Anniversary. Bob: Oh, good.
In this post, we are going to be, as Elvis used to say, TCB (taking care of business). It is a subject that people too often don't want to think about, as I think it reminds them of their mortality. So if you will pardon me, I am going to get on my soapbox, and since I don't want to split this important information up, it may be a long post. We had our first will drawn up when the children were little, but then we waited much too long to have it revised. It was revised about 10 years ago, and was much more complicated as it also involved a trust, and of course our circumstances had drastically changed! And as a nurse, I can't stress enough the importance of having a living will, a durable power of attorney for health care, and a durable power of attorney for the financial side. I was on the ethics committee at the hospital and that brought the urgency home even more. I can't tell you how complicated things get when a patient's wishes aren't written down, and the family is trying to decide what they would want done. The most bizarre case was when a patient in renal failure had written in his will that he wanted his body frozen to await the time when a cure would be found, and then he could be unfrozen, and live on. Google "cryonics"--it is being done! Of course there was money involved, and the family was in a huge fight! SO PLEASE! Even if you are 18 years old, get the living will done, and be as specific as you can. And please address organ donation wishes, as well.
Bob was intensely interested in our finances, and I trusted him, and let him take care of all of it. He would voraciously read books and magazines on the subject. I would glance at them, but it wasn't the light reading I wanted after a long night at work. Even the grandkids realized his passion. We were once playing school with 3 year old Emme, and Bob committed some infraction. She, as the teacher, lost patience, and told him to go sit in a corner and read the Wall Street Journal! His idol was Warren Buffet, and we used to tease him about that. He realized when we first started working at the hospital that we needed to save our money, and while I was totally on board, I wasn't sure how we were going to do that. But we did, and he early on started investing with his friend and financial advisor that he trusted. Again, I let him manage all of that, while I managed the household. But when I realized that he could not do it much longer, I started attending their periodic meetings, and tried to understand the intricacies of our financial world.
Early this year we again revised our will. I am going to emphasize again, PLEASE find a good elder care attorney that lives in that space. I know you will ask "How do I find one?" Our financial advisor recommended one, and another good way is word of mouth. The laws vary from state to state, and change constantly, and you need someone that keeps up with that. These past few months have been a steep learning curve, and I will give you a brief synopsis of what I have learned, but you need to find an elder care attorney for your own financial needs and situation. It also helped to have gone through some of this with my mother. If and when I need to put Bob in a facility, the minimum charge now is about $5,000 a month, not covered by Medicare. Then the fee increases as the level of care escalates. That is when we will have to start spending down his IRA! In Missouri, if his IRA would be spent down, I would have to start spending my IRA down for his care. BUT in Kansas, where we thankfully live, my IRA would be protected for my care. There is also something called "distribution of assets," but timing is critical for that, and needs to be tailored to your needs. The next scenario is what if Bob's IRA was spent all the way down. What would happen then? If the facility he was in did not accept Medicaid, when you could no longer pay out of pocket, they would probably give you 3 days to find a place that would accept Medicaid. AND when you were looking at places in a frantic rush, and you told places where you were looking he would be on Medicaid, they would say they had no beds, when they probably did. So you would need to watch and move your loved one to a place that accepts Medicaid a few months before your funds run out, and of course it wouldn't be a pristine facility in most cases. So you would need to choose carefully. The personal out of pocket funds (after division of assets) have to be spent down to $2000 in Kansas before Medicaid will take over. The spouse that is not in the facility can keep the car (buy a new one!), the house, and as I mentioned, in Kansas, can keep their IRA. Social workers are also invaluable resources to help walk you through all of this, as they know the different facilities well. The elder care attorney that I am going forward with charged one fee, and now will have meetings with me every few months to revisit our current status. The only more that would be charged would be if things needed to be revised drastically. I trust him as he was in another area of law practice, but when he saw the huge need in elder care law, he changed his focus, to help people navigate these rough waters. And a friend in the support group has used him for years.
Back to Bob. He is losing mobility, and has fallen, so I try to get him to always use a cane now. The other day he was getting up out of a chair with difficulty, and he started singing "The Old Grey Mare, she ain't what she used to be!" I have no doubt that your prayers have made him mellow again, so I can keep him at home longer. He is sleeping a lot, and I still can get out and he doesn't wander--yet. I guess the statistics are that 60% of Alzheimer's patients wander. I pray he is in the 40% that don't! Yesterday he gave me a sweet caress, and although he called me his daughter when he did it, it will become a treasured memory, if I don't lose MY memory! As Dr. Seuss says, "Sometimes you will never know the value of a moment until it becomes a memory." And sometimes the moments are fleeting!
I hope at least some of this has been helpful to you as you age gracefully!
Betty
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