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"
Monday, December 12, 2016
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
Friday, August 19, 2016
It has been a long time since I last posted, and if you remember, I said the grandkids were coming, and I knew it would be a busy time! They were here for 5 days and then I put Pop Pop in Brookdale Shawnee as planned. I took them with me so they could see where he would be. I think it was good for them. Then we did fun things like going to Royals games that we couldn't do when Bob was at home. Our son Ron and the 2 older ones left, as I was going on a road trip to my niece's wedding, and knew I couldn't handle all 3. The older ones had a turn when we took them to the nephew's wedding in Boston. But now it was 6 year old Libby's turn. We stayed in town for a week and did things she wanted to do. We went to see Pop Pop every day, and played board games together while we were there which he enjoyed watching. I was glad we stayed in town for a week as there were issues with changing his Depends. In my last post I mentioned they had assigned him to Larry and that worked well, but then Larry had days off. Bob wouldn't let the females help him. He just told them to get away from him, and he meant it! So I discussed the problem with the staff, and when Larry was off, they would get a male from another wing to help Bob. His strict upbringing would not allow a female to see him naked! Except for his wife thankfully!
Libby and I traveled over 3,000 miles on the trip to upper Michigan. She is the best little traveler, and we had the best time! We mostly didn't go over 400 miles a day, so we climbed sand dunes, and explored to our heart's content! There was only one trip malfunction. We were in a fairly good sized town where I wanted to show her a lighthouse. Suddenly the car started making a buzzing sound. It sounded like the transmission, but I put it in every gear and it still kept on. I turned the car off. The buzzing continued. We were getting ready to go to remote areas, so I told Libby we weren't leaving that town until we found the source. We got out and walked around the car. We followed the sound to Libby's suitcase where we found her automatic toothbrush had somehow gotten turned on....I was certainly glad I didn't have to go to a service station to have a MAN find that!!
The driving was so therapeutic for me, and I enjoyed being in the world! Dear friends had checked on Bob frequently and would Facebook, text, or email me so I knew he was doing OK. I emailed Brookdale and they responded that getting him to go to bed at night was hit or miss, but it is that way at home as well. But his feet and legs were very swollen when I picked him up. A couple of days of support hose and keeping them elevated helped that. The next day when I asked how his stay at Brookdale was, he couldn't remember being there. Everyone said he was always content and seemed happy when they saw him.
It has settled down to a routine since we have been home. That said, there is really no such thing as a routine with someone with Alzheimer's. Each day is a new normal. He kept telling me there were women in our bedroom closet when we got home. I told him I dared them to come out; I would take care of them. It still amazes me how different phases fade away, only to be replaced by something else, then the former pattern will return. Gone is the day where he carried at least 10 ballpoint pens in his jacket pocket. He is now layering his shirts. The record is the day he had five shirts on, plus his jacket. My mantra is, "If he isn't hurting himself or anyone else, let it be. Don't sweat the small stuff." But he IS sweating with all those shirts on, and I can't get him to take any or the jacket off! At least he is in the house with air conditioning, and I just keep him hydrated. I do hope you don't think I am making fun of Bob in these blogs, but I want to convey a bit about what living with an Alzheimer's person is like. You have to try to keep your sense of humor, or you are in trouble, and so are they. Ann, I was trying to get him to brush his teeth the other day, and he told me he didn't have teeth any more. You know how fastidious he used to be about dental hygiene. You commented on my last blog where he said he couldn't find his teeth. I guess now I should cancel his upcoming appointment if he doesn't have any teeth!
Some of you know how I agonized about putting Bob in respite care. But then one of our friends told me something I had forgotten. We were sitting on the couch in their home, and we told them of Bob's diagnosis. Bob told them he was just worried about me, and what would happen to me. Then Valerie our daughter also told me this story: He told her, "You know I am being tested for Alzheimer's. It doesn't matter what happens with me, as I won't know it is happening. Please just take care of your mother, and don't let anything happen to her."
People outside your life cannot understand that you have not simply lost one person dear to you at one point in time. You have lost their presence in every aspect of your life. Your Future has changed as well as your Now. So I am trying to do what Bob would want me to do, and doing the best I can for both of us. I just pray every day that God will guide me as we travel into what the future holds.
Thank you for reading this, and thank you for your love and understanding,
Betty
Libby and I traveled over 3,000 miles on the trip to upper Michigan. She is the best little traveler, and we had the best time! We mostly didn't go over 400 miles a day, so we climbed sand dunes, and explored to our heart's content! There was only one trip malfunction. We were in a fairly good sized town where I wanted to show her a lighthouse. Suddenly the car started making a buzzing sound. It sounded like the transmission, but I put it in every gear and it still kept on. I turned the car off. The buzzing continued. We were getting ready to go to remote areas, so I told Libby we weren't leaving that town until we found the source. We got out and walked around the car. We followed the sound to Libby's suitcase where we found her automatic toothbrush had somehow gotten turned on....I was certainly glad I didn't have to go to a service station to have a MAN find that!!
The driving was so therapeutic for me, and I enjoyed being in the world! Dear friends had checked on Bob frequently and would Facebook, text, or email me so I knew he was doing OK. I emailed Brookdale and they responded that getting him to go to bed at night was hit or miss, but it is that way at home as well. But his feet and legs were very swollen when I picked him up. A couple of days of support hose and keeping them elevated helped that. The next day when I asked how his stay at Brookdale was, he couldn't remember being there. Everyone said he was always content and seemed happy when they saw him.
It has settled down to a routine since we have been home. That said, there is really no such thing as a routine with someone with Alzheimer's. Each day is a new normal. He kept telling me there were women in our bedroom closet when we got home. I told him I dared them to come out; I would take care of them. It still amazes me how different phases fade away, only to be replaced by something else, then the former pattern will return. Gone is the day where he carried at least 10 ballpoint pens in his jacket pocket. He is now layering his shirts. The record is the day he had five shirts on, plus his jacket. My mantra is, "If he isn't hurting himself or anyone else, let it be. Don't sweat the small stuff." But he IS sweating with all those shirts on, and I can't get him to take any or the jacket off! At least he is in the house with air conditioning, and I just keep him hydrated. I do hope you don't think I am making fun of Bob in these blogs, but I want to convey a bit about what living with an Alzheimer's person is like. You have to try to keep your sense of humor, or you are in trouble, and so are they. Ann, I was trying to get him to brush his teeth the other day, and he told me he didn't have teeth any more. You know how fastidious he used to be about dental hygiene. You commented on my last blog where he said he couldn't find his teeth. I guess now I should cancel his upcoming appointment if he doesn't have any teeth!
Some of you know how I agonized about putting Bob in respite care. But then one of our friends told me something I had forgotten. We were sitting on the couch in their home, and we told them of Bob's diagnosis. Bob told them he was just worried about me, and what would happen to me. Then Valerie our daughter also told me this story: He told her, "You know I am being tested for Alzheimer's. It doesn't matter what happens with me, as I won't know it is happening. Please just take care of your mother, and don't let anything happen to her."
People outside your life cannot understand that you have not simply lost one person dear to you at one point in time. You have lost their presence in every aspect of your life. Your Future has changed as well as your Now. So I am trying to do what Bob would want me to do, and doing the best I can for both of us. I just pray every day that God will guide me as we travel into what the future holds.
Thank you for reading this, and thank you for your love and understanding,
Betty
Saturday, June 25, 2016
This past month has been very busy and the next month will be as well. The grandkids are coming, the grandkids are coming!
Bob has been doing very well at the day stay at Brookdale Shawnee one day a week. It has let them get to know him and gives him a place where he can socialize. The aggressiveness that he was having has left. I don't know where it went, but I certainly haven't tried to go find it! Last week he had his first respite care stay which was 24/7 for 3 days. This was like a trial time, probably more to see if I could do it rather than if he could do it. I thought a lot about what I wanted to do during that time. If I had stayed home, with all good intentions of reading books, I would have been pacing the floor, especially when it came bedtime. So I asked some former neighbors and dear forever friends, Sherman and Joyce Blevins if I could come visit them for 3 days. They live in Branson now, and have a home a mile from the strip. The back of the house overlooks a wooded valley that makes you think you are miles from civilization. Every morning I would take a cup of coffee and go out on the back deck and have my devotions, and just draw inspiration from the hills. During the day we kept busy. One morning we went to a morning show "Oh Happy Day" at the Hughes Brothers Theatre. If you haven't seen it, it is so inspiring--all traditional gospel music mixed in with some Gaither songs. And one morning I went to go see a friend, Naomi Coleman, that I hadn't seen in forever, and we talked each other's heads off! We also went to shows in the evenings as well, when I needed to have my mind occupied. The second day I couldn't help but call to see how Bob was doing, and they said they couldn't get him to go to bed to sleep at night. But he was perfectly content to sit and doze in an easy chair in the common area, and they were fine with that. I told them sometimes (last night) he doesn't come to bed at all even at home. And he had worn a tie, and I was afraid they would never get the tie off him as it is his favorite tie, and they said, no, they couldn't get him to change clothes. So I asked if they had a black man, preferably jolly, that could work with Bob. They said they had just the man! Enter Larry! He and Bob quickly became best of friends and Larry could get him to do anything! Bob was fine when I picked him up, and I asked him a question the next day about what he had done, and he didn't remember going anywhere.
I am so conflicted with needing to spend time with Bob and also needing to spend precious time with grandchildren that are getting older much too quickly. But this seems like a perfect solution, as he is content there, and I can see the grandkids, and also have respite time, which I need. It is easier to keep a sense of humor if you have gotten a break! The other day I asked Bob if he would brush his teeth. He responded with "Where are they?" Now he doesn't have dentures, so this made me go into a gale of laughter, and then he laughed as well! They can't be too hard to find! So he will have a 3 week respite care in July, while I spend time with the grandchildren.
I went to a presentation Thursday night sponsored by AgewiseKC. The subject was "Daily Strategies for Dementia Challenges." The main theme was "Do more of what works, and less of what doesn't". That is so true, but I have noticed that things tend to go in cycles, and what works one day may not work the next. I got Bob to come to bed 2 nights by telling him I would give him a back rub, but that strategy has not worked since. (Can you imagine turning down a back rub?!) The speaker also said to watch out for the "shoulds" and the "should nots". For example, the rule of thumb is you should not ever leave an Alzheimer's person alone. But everyone is so different, and I am still so fortunate that I can still leave Bob and go run errands or have lunch with a friend. He never tries to leave our home like he left the hotel in March, and he never bothers anything in the house. A friend just told me about a camera you can set up at home, and then watch him on your phone. I am getting that! Then I can see what he does downstairs all night! One thing that is so hard to remember but is so vital is to remember that the person is not out to GIVE you a hard time, they are HAVING a hard time. Their behaviors are a way of communicating, and you need to ask "What are they trying to tell me" instead of "Why are they doing that?" What are they doing their best to say? They are doing the best they can, with what they have, with where they are. They said, and I have found it works with Bob, that the more you can simplify things, and use fewer words, the better a response you get. And too much data, too much stimulation coming at him, causes acting out behaviors. It may be too light, too hot or too cold, or too much noise or combination of noises. There is an easy listening music channel on the TV and he will sit and listen to that for hours, but again, as I said before, the news channel is too much coming at him at once. And the news gets more upsetting every day!
The speaker ended by saying that it is an on-going learning process for the caregiver, or as I have also heard it called "care partner" because you are in this together. All a person can do is to do the best you can, and leave the rest to God.
I am getting to know so many wonderful caregivers out there! My nursing roommate and substitute sister, Bonnie Kendall Humphreys just passed away after her battle with multiple myeloma. Her husband Ron was her caregiver and did a wonderful job. And the husband of a friend in my support group died in his sleep last week. My thoughts and prayers are with the ones still providing care.
Love you all,
Betty
Bob has been doing very well at the day stay at Brookdale Shawnee one day a week. It has let them get to know him and gives him a place where he can socialize. The aggressiveness that he was having has left. I don't know where it went, but I certainly haven't tried to go find it! Last week he had his first respite care stay which was 24/7 for 3 days. This was like a trial time, probably more to see if I could do it rather than if he could do it. I thought a lot about what I wanted to do during that time. If I had stayed home, with all good intentions of reading books, I would have been pacing the floor, especially when it came bedtime. So I asked some former neighbors and dear forever friends, Sherman and Joyce Blevins if I could come visit them for 3 days. They live in Branson now, and have a home a mile from the strip. The back of the house overlooks a wooded valley that makes you think you are miles from civilization. Every morning I would take a cup of coffee and go out on the back deck and have my devotions, and just draw inspiration from the hills. During the day we kept busy. One morning we went to a morning show "Oh Happy Day" at the Hughes Brothers Theatre. If you haven't seen it, it is so inspiring--all traditional gospel music mixed in with some Gaither songs. And one morning I went to go see a friend, Naomi Coleman, that I hadn't seen in forever, and we talked each other's heads off! We also went to shows in the evenings as well, when I needed to have my mind occupied. The second day I couldn't help but call to see how Bob was doing, and they said they couldn't get him to go to bed to sleep at night. But he was perfectly content to sit and doze in an easy chair in the common area, and they were fine with that. I told them sometimes (last night) he doesn't come to bed at all even at home. And he had worn a tie, and I was afraid they would never get the tie off him as it is his favorite tie, and they said, no, they couldn't get him to change clothes. So I asked if they had a black man, preferably jolly, that could work with Bob. They said they had just the man! Enter Larry! He and Bob quickly became best of friends and Larry could get him to do anything! Bob was fine when I picked him up, and I asked him a question the next day about what he had done, and he didn't remember going anywhere.
I am so conflicted with needing to spend time with Bob and also needing to spend precious time with grandchildren that are getting older much too quickly. But this seems like a perfect solution, as he is content there, and I can see the grandkids, and also have respite time, which I need. It is easier to keep a sense of humor if you have gotten a break! The other day I asked Bob if he would brush his teeth. He responded with "Where are they?" Now he doesn't have dentures, so this made me go into a gale of laughter, and then he laughed as well! They can't be too hard to find! So he will have a 3 week respite care in July, while I spend time with the grandchildren.
I went to a presentation Thursday night sponsored by AgewiseKC. The subject was "Daily Strategies for Dementia Challenges." The main theme was "Do more of what works, and less of what doesn't". That is so true, but I have noticed that things tend to go in cycles, and what works one day may not work the next. I got Bob to come to bed 2 nights by telling him I would give him a back rub, but that strategy has not worked since. (Can you imagine turning down a back rub?!) The speaker also said to watch out for the "shoulds" and the "should nots". For example, the rule of thumb is you should not ever leave an Alzheimer's person alone. But everyone is so different, and I am still so fortunate that I can still leave Bob and go run errands or have lunch with a friend. He never tries to leave our home like he left the hotel in March, and he never bothers anything in the house. A friend just told me about a camera you can set up at home, and then watch him on your phone. I am getting that! Then I can see what he does downstairs all night! One thing that is so hard to remember but is so vital is to remember that the person is not out to GIVE you a hard time, they are HAVING a hard time. Their behaviors are a way of communicating, and you need to ask "What are they trying to tell me" instead of "Why are they doing that?" What are they doing their best to say? They are doing the best they can, with what they have, with where they are. They said, and I have found it works with Bob, that the more you can simplify things, and use fewer words, the better a response you get. And too much data, too much stimulation coming at him, causes acting out behaviors. It may be too light, too hot or too cold, or too much noise or combination of noises. There is an easy listening music channel on the TV and he will sit and listen to that for hours, but again, as I said before, the news channel is too much coming at him at once. And the news gets more upsetting every day!
The speaker ended by saying that it is an on-going learning process for the caregiver, or as I have also heard it called "care partner" because you are in this together. All a person can do is to do the best you can, and leave the rest to God.
I am getting to know so many wonderful caregivers out there! My nursing roommate and substitute sister, Bonnie Kendall Humphreys just passed away after her battle with multiple myeloma. Her husband Ron was her caregiver and did a wonderful job. And the husband of a friend in my support group died in his sleep last week. My thoughts and prayers are with the ones still providing care.
Love you all,
Betty
Monday, May 23, 2016
This will be a very different post so take it or leave it!
A friend Cathy Hatley, sent me a link that was streamed live over the internet Sunday for 4 hours! So many people were watching that the site crashed, but then they got it working! I can send you the whole thing if you would like! It is called "Unlocking the code for brain healing". The speaker was Dr. Wes Youngberg, who a lifestyle medicine specialist and clinical nutritionist at Loma Linda University School of Medicine and Public Health. The research is from UCLA, Harvard, LLU, and Cleveland Clinic.
I would urge you to take all studies with a grain of salt, as we all know of well known studies that turn out to be completely false. Do your own research and thinking, and do what is right for you. But this nutshell from the seminar may have some good points in it that will make you think.
A friend of mine, Sherry Lee, and I were talking after church this week. What is it that makes it seems like dementia is now an epidemic? We all knew people in our childhood that were a little daffy, and people said they had "hardening of the arteries". But this seems much worse. Is it the environment? I have been trying to figure out how this all relates to Bob. He certainly exercised enough (at least 2 hours a day on the stationary bike or rowing machine) but maybe he exercised at the wrong time? Lack of sleep as they note, could certainly had something to do with it, but then by all rights, I should have dementia as well. Could the food he ate be at fault? He ate almost a whole box of Little Debbies (which we no longer have in the house) once or twice. Valerie caught him snitching in the middle of the night while I was at work and ratted on him!
So we will proceed with the highlights of the seminar. I was writing as fast as I could, and Bob was talking to me the whole time, and making comments, so I hope it makes sense! You will hear a lot about insulin resistance, and how it relates to the brain.
You need to avoid things that have high fructose at all costs, as it causes insulin resistance and increases the risk for Alzheimer's. Inflammation also stimulates formation of amyloid plaques. Measures of inflammation in plaque dust and the arteries are CRP studies that give some idea of the extent. The brain need some amyloid, but too much is bad and it needs to be controlled. The foods that cause the highest inflammation are 1. Refined grains 2. Processed meats 3. Sugar (candy, cake, pastries) 4. Diet soda (an Alzheimer's pantry he says). Things that help control inflammation are
1. Getting a good night's sleep (the hours before midnight are the best) 2. Get in good bright light, as it increases melatonin formation and helps you sleep better. It also gives you Vitamin D which is even better than Vitamin C as an inflammation fighter. Sleep cleanses the brain. 3. You need to control constant or chronic infections in your body--urinary tract infections, sinus infections, and tooth infections. These will all cause inflammation of the brain (and of the heart as well). Fortify your body to combat infections. 4. Do a gentle walk after you eat dinner. Your blood sugar rises dramatically after you eat, and for every minute you walk, you lower your blood sugar 1-2 points. But hard exercise such as a marathon causes blood sugar to crash, and causes the immune system to plummet. 5. Follow an optimal plant based diet. Beans and legumes are the most powerful food to lower insulin resistance and lower blood sugar for the next 24 hours. You need optimal digestion for optimal brain function. The less insulin (your body produces) the less insulin you need to use in the rest of your body and less amyloid plaques form. In other words, the more insulin you have to produce to lower blood sugar in your body, the less can be used to break down beta amyloids in the brain, and the brain becomes damaged.
The next section is about insulin resistance and information can also be found at "diabetes undone.com", "dryoungberg.com", and "Diabetes and Alzheimer's"--Ewan McNay on YouTube.
Alzheimer's is also called a Type III diabetes--diabetes of the brain. Type II diabetes is called Alzheimer's of the pancreas, and is an insulin resistant state. It is an amyloid disease like Alzheimer's. Diabetes and pre-diabetes are precursors to Alzheimer's and low grade infections cause amyloid plaques in the pancreas. A lot of adults have insulin resistance because of stress and crazy life styles. Acute stress causes the adrenal glands to produce more cortisol and the liver will also dump sugar. Insulin allows sugar to flow from the blood stream to the cells of the body. The brain needs glucose and time released carbohydrates to function. So you need to try to protect the brain from hypoglycemic coma. If the blood sugar is too low in the brain, brain cells will be injured and contribute to Alzheimer's. Low grade infections also cause amyloid plaques in the pancreas. A low grade infection is a major driver of the insulin resistance and beta cell damage. But you need to find the cause of the infection rather than throwing drugs at it! Insulin enhances the hippocampus in the brain and glucose supply to the hippocampus is a key component of memory. Also stay hydrated.
Speaking of drugs, the next risk factor is drugs and he talked a lot about them. A lot of drugs are anticholinergic, and cause memory loss. An anticholinergic agent is a substance that blocks the neurotransmitter acetylcholine in the central and peripheral nervous system. Some of the main ones he mentioned are Xanax, Abilify, Tagamet, Haldol, Zantac, Coumadin, Claritin, and Zyrtec. Some are over the counter, and others are routinely prescribed by physicians. Amazing stuff, huh?
Is your brain spinning with all this "nursey" information? I hope you found even one thing to help. That is, if you lasted through the whole thing!
To your optimum health of brain and body,
Betty
A friend Cathy Hatley, sent me a link that was streamed live over the internet Sunday for 4 hours! So many people were watching that the site crashed, but then they got it working! I can send you the whole thing if you would like! It is called "Unlocking the code for brain healing". The speaker was Dr. Wes Youngberg, who a lifestyle medicine specialist and clinical nutritionist at Loma Linda University School of Medicine and Public Health. The research is from UCLA, Harvard, LLU, and Cleveland Clinic.
I would urge you to take all studies with a grain of salt, as we all know of well known studies that turn out to be completely false. Do your own research and thinking, and do what is right for you. But this nutshell from the seminar may have some good points in it that will make you think.
A friend of mine, Sherry Lee, and I were talking after church this week. What is it that makes it seems like dementia is now an epidemic? We all knew people in our childhood that were a little daffy, and people said they had "hardening of the arteries". But this seems much worse. Is it the environment? I have been trying to figure out how this all relates to Bob. He certainly exercised enough (at least 2 hours a day on the stationary bike or rowing machine) but maybe he exercised at the wrong time? Lack of sleep as they note, could certainly had something to do with it, but then by all rights, I should have dementia as well. Could the food he ate be at fault? He ate almost a whole box of Little Debbies (which we no longer have in the house) once or twice. Valerie caught him snitching in the middle of the night while I was at work and ratted on him!
So we will proceed with the highlights of the seminar. I was writing as fast as I could, and Bob was talking to me the whole time, and making comments, so I hope it makes sense! You will hear a lot about insulin resistance, and how it relates to the brain.
You need to avoid things that have high fructose at all costs, as it causes insulin resistance and increases the risk for Alzheimer's. Inflammation also stimulates formation of amyloid plaques. Measures of inflammation in plaque dust and the arteries are CRP studies that give some idea of the extent. The brain need some amyloid, but too much is bad and it needs to be controlled. The foods that cause the highest inflammation are 1. Refined grains 2. Processed meats 3. Sugar (candy, cake, pastries) 4. Diet soda (an Alzheimer's pantry he says). Things that help control inflammation are
1. Getting a good night's sleep (the hours before midnight are the best) 2. Get in good bright light, as it increases melatonin formation and helps you sleep better. It also gives you Vitamin D which is even better than Vitamin C as an inflammation fighter. Sleep cleanses the brain. 3. You need to control constant or chronic infections in your body--urinary tract infections, sinus infections, and tooth infections. These will all cause inflammation of the brain (and of the heart as well). Fortify your body to combat infections. 4. Do a gentle walk after you eat dinner. Your blood sugar rises dramatically after you eat, and for every minute you walk, you lower your blood sugar 1-2 points. But hard exercise such as a marathon causes blood sugar to crash, and causes the immune system to plummet. 5. Follow an optimal plant based diet. Beans and legumes are the most powerful food to lower insulin resistance and lower blood sugar for the next 24 hours. You need optimal digestion for optimal brain function. The less insulin (your body produces) the less insulin you need to use in the rest of your body and less amyloid plaques form. In other words, the more insulin you have to produce to lower blood sugar in your body, the less can be used to break down beta amyloids in the brain, and the brain becomes damaged.
The next section is about insulin resistance and information can also be found at "diabetes undone.com", "dryoungberg.com", and "Diabetes and Alzheimer's"--Ewan McNay on YouTube.
Alzheimer's is also called a Type III diabetes--diabetes of the brain. Type II diabetes is called Alzheimer's of the pancreas, and is an insulin resistant state. It is an amyloid disease like Alzheimer's. Diabetes and pre-diabetes are precursors to Alzheimer's and low grade infections cause amyloid plaques in the pancreas. A lot of adults have insulin resistance because of stress and crazy life styles. Acute stress causes the adrenal glands to produce more cortisol and the liver will also dump sugar. Insulin allows sugar to flow from the blood stream to the cells of the body. The brain needs glucose and time released carbohydrates to function. So you need to try to protect the brain from hypoglycemic coma. If the blood sugar is too low in the brain, brain cells will be injured and contribute to Alzheimer's. Low grade infections also cause amyloid plaques in the pancreas. A low grade infection is a major driver of the insulin resistance and beta cell damage. But you need to find the cause of the infection rather than throwing drugs at it! Insulin enhances the hippocampus in the brain and glucose supply to the hippocampus is a key component of memory. Also stay hydrated.
Speaking of drugs, the next risk factor is drugs and he talked a lot about them. A lot of drugs are anticholinergic, and cause memory loss. An anticholinergic agent is a substance that blocks the neurotransmitter acetylcholine in the central and peripheral nervous system. Some of the main ones he mentioned are Xanax, Abilify, Tagamet, Haldol, Zantac, Coumadin, Claritin, and Zyrtec. Some are over the counter, and others are routinely prescribed by physicians. Amazing stuff, huh?
Is your brain spinning with all this "nursey" information? I hope you found even one thing to help. That is, if you lasted through the whole thing!
To your optimum health of brain and body,
Betty
Saturday, May 7, 2016
I don't quite know how to start, so I will just jump right in. The purpose of this blog is to portray our experiences honestly as we go through this journey, so today you are going to see a lot of conflicting emotions.
I have been going to see different dementia care facilities, some with a friend that also goes to the support group, and then I go to see some on my own. One of the ones we went to see had a waiting list of about a year, and a flat rate of $9000 a month. Most start at between 5 and 6 thousand a month, and the cost increases when the level of care increases. We take notes from each one, and then compare our findings.
Then a couple of weeks ago, I took Bob for his 6 month checkup with the primary care physician. He had been up all night for a couple of nights straight, and we must have looked like something the cat (which we don't have) dragged in! We were discussing his condition, as he has recently seemed to be in a downhill slide. There are now issues with safety and incontinence. She recommended that I start thinking about permanent placement. I told her I was going to have to take this slowly, both for my sake, and his sake, while I wrap my mind around it. My thought process at this point is to start a day stay, then a 24/7 respite care when I need it. That would give us a chance to see how he (and I) do. I came home from the doctor's office and was sitting at the table crying and he came over and was comforting me. He said, "Bett, who is giving you trouble? Just let me know and I will take care of them for you." Flashes of the old Bob shining through!
A new friend I have made from yoga class told me recently that her mother is in a dementia care facility called Brookdale Shawnee, and the staff there was wonderful, and she had no complaints at all, which is amazing! It is about 2 miles from us, and I was driving by it one day, so on a whim, I stopped and went in. The marketing manager who would normally give tours was out to lunch, so they went and got the director, and she immediately dropped what she was doing, and gave this person who dropped in a grand tour. Her office is a desk out in a hallway, so she is right there overseeing everything. I was most impressed. AND they had just started a day stay program and we would be the second participants! I felt like that was a sign that we were in the right place at the right time.
In the past month I have also gone to see a recommended elder care attorney to rewrite our existing will and trust. It had bugged me, as I knew I recognized his name from somewhere. We had just started the interview when he slapped his head and said, "I know Bob Woolford! We were in Centurians together!" Centurians is an organization where your employer (in Bob's case, the hospital) sponsors you, and you work together with others in the city for a period of a year to do community service. It becomes a tight knit group, and they get well acquainted during that time. I had heard Bob talk about this man! So right away, I felt more at ease, and he did a wonderful job.
I am also going to a seminar next week with another elder care attorney. Then the next week I go to our stockbroker and financial planner and he has enlisted yet another elder care attorney to walk us through any questions. Our stockbroker has served us for years, and is on the hospital foundation board. Bob used to take care of all the investment dealings, and they had become personal friends. Yet another huge plus! We had talked about getting long term care insurance many times over the years, and did not for several reasons. Do I now recommend it? I am not sure. There are many pros and cons.
Yesterday was his first day in the day stay at Brookdale Shawnee. I was like a new mother when I took him, feeling like saying "Take good care of my baby!" I had told him he was going to a meeting, as he always thinks he needs to go to a meeting at the hospital. I left him and then went to lunch with a special friend and sister-in-love, Arlene Magruder. Bob loves her because she has gray hair and reminds him of his grandma. She can get him to do anything! Maybe I should let my hair go gray! Sorry, I am not ready for that! Anyway, after lunch, I went home to relax. I looked at Facebook, and there was a personal message from the head elder at our church who is also a chaplain. He was visiting someone at Brookdale, and saw Bob. He asked how Bob was doing, and if he was a full time resident there now. I told him, no, it was just a day stay, and asked him to tell me how Bob was doing! He said he was eating lunch and was seemed very comfortable. I took the opportunity to ask what he thought of the facility. He answered back that the director was a gem, and that I had made a good choice for a difficult situation. Then I was able to relax even more! When I went to pick him up, they were just dispersing after a musical program. He was helping little ladies (with gray hair!) out of their chairs. He told me he was in charge of this program, and it wasn't over, so he couldn't leave yet!
Arlene recently sent me a link that talks about Alzheimer's and the stages of grief. They are just like the stages of grief for the dying process in Elisabeth Kubler-Ross's book, "On Death and Dying".
1. Denial 2. Anger 3. Guilt 4. Depression or sadness 5. Acceptance, where the loved ones ultimately acknowledge the diagnosis. During this phase, many times people can find meaning in caring for their loved one. They learn to enjoy the remaining time together. (The link says).
Am I in the acceptance phase yet? I don't know. Our vows said that we would cherish each other "in sickness and in health, as long as we both shall live." I know that I have to take care of myself so I can take care of him, but then guilt sets in and I feel like I am betraying his trust in me.
Another friend told me recently that crosses are given to selected persons only who are strong enough to carry them. Sometimes I don't feel very strong! I am not asking for pity, I am only sharing these feelings. I hope you can see the common thread throughout this blog. It isn't just coincidence that is making the good things happen--it is the hand of God leading me.
Prayers appreciated!
Betty
I have been going to see different dementia care facilities, some with a friend that also goes to the support group, and then I go to see some on my own. One of the ones we went to see had a waiting list of about a year, and a flat rate of $9000 a month. Most start at between 5 and 6 thousand a month, and the cost increases when the level of care increases. We take notes from each one, and then compare our findings.
Then a couple of weeks ago, I took Bob for his 6 month checkup with the primary care physician. He had been up all night for a couple of nights straight, and we must have looked like something the cat (which we don't have) dragged in! We were discussing his condition, as he has recently seemed to be in a downhill slide. There are now issues with safety and incontinence. She recommended that I start thinking about permanent placement. I told her I was going to have to take this slowly, both for my sake, and his sake, while I wrap my mind around it. My thought process at this point is to start a day stay, then a 24/7 respite care when I need it. That would give us a chance to see how he (and I) do. I came home from the doctor's office and was sitting at the table crying and he came over and was comforting me. He said, "Bett, who is giving you trouble? Just let me know and I will take care of them for you." Flashes of the old Bob shining through!
A new friend I have made from yoga class told me recently that her mother is in a dementia care facility called Brookdale Shawnee, and the staff there was wonderful, and she had no complaints at all, which is amazing! It is about 2 miles from us, and I was driving by it one day, so on a whim, I stopped and went in. The marketing manager who would normally give tours was out to lunch, so they went and got the director, and she immediately dropped what she was doing, and gave this person who dropped in a grand tour. Her office is a desk out in a hallway, so she is right there overseeing everything. I was most impressed. AND they had just started a day stay program and we would be the second participants! I felt like that was a sign that we were in the right place at the right time.
In the past month I have also gone to see a recommended elder care attorney to rewrite our existing will and trust. It had bugged me, as I knew I recognized his name from somewhere. We had just started the interview when he slapped his head and said, "I know Bob Woolford! We were in Centurians together!" Centurians is an organization where your employer (in Bob's case, the hospital) sponsors you, and you work together with others in the city for a period of a year to do community service. It becomes a tight knit group, and they get well acquainted during that time. I had heard Bob talk about this man! So right away, I felt more at ease, and he did a wonderful job.
I am also going to a seminar next week with another elder care attorney. Then the next week I go to our stockbroker and financial planner and he has enlisted yet another elder care attorney to walk us through any questions. Our stockbroker has served us for years, and is on the hospital foundation board. Bob used to take care of all the investment dealings, and they had become personal friends. Yet another huge plus! We had talked about getting long term care insurance many times over the years, and did not for several reasons. Do I now recommend it? I am not sure. There are many pros and cons.
Yesterday was his first day in the day stay at Brookdale Shawnee. I was like a new mother when I took him, feeling like saying "Take good care of my baby!" I had told him he was going to a meeting, as he always thinks he needs to go to a meeting at the hospital. I left him and then went to lunch with a special friend and sister-in-love, Arlene Magruder. Bob loves her because she has gray hair and reminds him of his grandma. She can get him to do anything! Maybe I should let my hair go gray! Sorry, I am not ready for that! Anyway, after lunch, I went home to relax. I looked at Facebook, and there was a personal message from the head elder at our church who is also a chaplain. He was visiting someone at Brookdale, and saw Bob. He asked how Bob was doing, and if he was a full time resident there now. I told him, no, it was just a day stay, and asked him to tell me how Bob was doing! He said he was eating lunch and was seemed very comfortable. I took the opportunity to ask what he thought of the facility. He answered back that the director was a gem, and that I had made a good choice for a difficult situation. Then I was able to relax even more! When I went to pick him up, they were just dispersing after a musical program. He was helping little ladies (with gray hair!) out of their chairs. He told me he was in charge of this program, and it wasn't over, so he couldn't leave yet!
Arlene recently sent me a link that talks about Alzheimer's and the stages of grief. They are just like the stages of grief for the dying process in Elisabeth Kubler-Ross's book, "On Death and Dying".
1. Denial 2. Anger 3. Guilt 4. Depression or sadness 5. Acceptance, where the loved ones ultimately acknowledge the diagnosis. During this phase, many times people can find meaning in caring for their loved one. They learn to enjoy the remaining time together. (The link says).
Am I in the acceptance phase yet? I don't know. Our vows said that we would cherish each other "in sickness and in health, as long as we both shall live." I know that I have to take care of myself so I can take care of him, but then guilt sets in and I feel like I am betraying his trust in me.
Another friend told me recently that crosses are given to selected persons only who are strong enough to carry them. Sometimes I don't feel very strong! I am not asking for pity, I am only sharing these feelings. I hope you can see the common thread throughout this blog. It isn't just coincidence that is making the good things happen--it is the hand of God leading me.
Prayers appreciated!
Betty
Wednesday, April 13, 2016
This blog should be called "Adventures Through Alzheimer's." And what an adventure it is! We were getting ready for a trip to Chattanooga, TN to be with the grandkids there for Spring Break. I asked the primary physician for a medication to make him a bit calmer for while we were on the trip. She said no, she would like to wait for his annual physical the end of April to see him first. But then I got a call from Walgreen's that a prescription was ready. I couldn't imagine what it was, but bless her heart, she had called in a prescription for resperidone 0.5 mg. He started taking it right away, but it was time to leave on the trip. On Easter weekend our son Ron met us in Gatlinburg and we were going to take the kids to Dollywood, a theme park named after Dolly Parton, of course! I hesitate to say this next part, as I know you will say we shouldn't have left Bob alone in the hotel room. But he would certainly prefer that to trooping around Dollywood! And we have always done that, and he is content to stay in the hotel room and watch TV, and we had a room with a balcony overlooking the river. It was a beautiful day, but when we got back to the room that afternoon, he was gone, and so was a suitcase on wheels....We all jumped in the car, and took off. The kids were asking how we were going to find him, and I said,"We are going to put this thing to the test." In a previous post I mentioned that I had gotten him a GPS to keep in his pocket (which he faithfully does) and an app on my phone tells where he is. It worked well, even showed that he was moving (walking). But the traffic in Gatlinburg if you don't know, is horrendous. Branson has figured it out with alternate routes, but not Gatlinburg! So we were just stuck in traffic, not able to even move. So Ron said he would run to where he was, about a mile away. 14 year old grandson Nate was of course fascinated by this technology, and kept in touch with his dad with his phone, so he could give him updates where he had moved. At one point he was in front of the aquarium, with hordes of people around it! But Ron finally caught up to him in the parking lot of a Mexican restaurant and kept him in sight until we could get there in the car, just inching along! He was still pulling the suitcase which he had packed with things from the hotel. Needless to say, we were glad to see him and he was glad to see us! So that is the last time we can leave him in a hotel room! But he tried to do the same thing a couple of days later when we were back in Chattanooga, and I was in the house. Also he kept pushing the panic button on the GPS, so I finally put tape over the button to hide it. I am sure the people that monitor it were quite tired of us, as they always answer so promptly, and I had to keep assuring them that he was all right.
I guess the medication takes awhile to work, as by the time we got home, he was much calmer. And he has stopped the incessant talking that he was doing. He could talk for hours without seemingly taking a breath. For those of you who have witnessed this phenominum, I am sorry, but there is no stopping him once he gets going. A girlfriend came over to visit me one day and watch me work on a project, and he talked to her for 3 solid hours. When I tried to get a word in edgewise, he got mad and told me I was interrupting him! The next time, the friend and I met for lunch! I was worried he would try to leave after we got home again, but so far he has not. I think he is worn out! And like I say, it is more peaceful in the house and I can collect my thoughts without him talking nonstop. Before, I was just trying to tune him out. Hopefully the medication will help for awhile.
Until fairly recently every time I went somewhere and turned on the car radio, Kelly Clarkson's song "What doesn't kill you makes you stronger" came on. I was beginning to think it was a personal message meant for just me! So I have been listening to the 50s channel on Sirius. The other day the song "Flying purple people eater" came on. I had forgotten all about that one! I am not sure it is better than "Stronger"!
Last week, we saw a friend in church we hadn't seen for awhile. We had braved the wilds of Africa on a mission trip together, and he and Bob just hit it off right away. (I already knew him as he was a nurse at the hospital.) He didn't know what had happened with Bob and he asked Bob how he was doing. Bob told him he didn't have a brain anymore. That really surprised me, as that was the first time I have ever heard Bob admit his condition to anyone! You should be honored Pete! Then he went on to say that it was OK though, as when he got to heaven, God was going to give him a new brain. A moment of being completely lucid!
Oh, I long for that day!
In the meantime, other adventures await, hopefully not as dramatic!
Betty
I guess the medication takes awhile to work, as by the time we got home, he was much calmer. And he has stopped the incessant talking that he was doing. He could talk for hours without seemingly taking a breath. For those of you who have witnessed this phenominum, I am sorry, but there is no stopping him once he gets going. A girlfriend came over to visit me one day and watch me work on a project, and he talked to her for 3 solid hours. When I tried to get a word in edgewise, he got mad and told me I was interrupting him! The next time, the friend and I met for lunch! I was worried he would try to leave after we got home again, but so far he has not. I think he is worn out! And like I say, it is more peaceful in the house and I can collect my thoughts without him talking nonstop. Before, I was just trying to tune him out. Hopefully the medication will help for awhile.
Until fairly recently every time I went somewhere and turned on the car radio, Kelly Clarkson's song "What doesn't kill you makes you stronger" came on. I was beginning to think it was a personal message meant for just me! So I have been listening to the 50s channel on Sirius. The other day the song "Flying purple people eater" came on. I had forgotten all about that one! I am not sure it is better than "Stronger"!
Last week, we saw a friend in church we hadn't seen for awhile. We had braved the wilds of Africa on a mission trip together, and he and Bob just hit it off right away. (I already knew him as he was a nurse at the hospital.) He didn't know what had happened with Bob and he asked Bob how he was doing. Bob told him he didn't have a brain anymore. That really surprised me, as that was the first time I have ever heard Bob admit his condition to anyone! You should be honored Pete! Then he went on to say that it was OK though, as when he got to heaven, God was going to give him a new brain. A moment of being completely lucid!
Oh, I long for that day!
In the meantime, other adventures await, hopefully not as dramatic!
Betty
Friday, March 18, 2016
This blog will be about the different resources that are available and some things I have found helpful.
I have read several books lately and they each in their own way offer nuggets of inspiration. The #1 book I recommend is "Being Mortal" by Atol Gawande. He is a surgeon from India and addresses the "golden years" concerns from places to reside to the physical end of life issues, and gives case studies for each to keep it interesting. Every physician and medical student should be required to read this book.
The second book is "The 36-Hour Day" by Nancy L. Mace, MAand Peter V. Rabins, MD. It is "a family guide to caring for people who have Alzheimer's disease, related dementias, and memory loss."
The third book is "Come back early today" by Marie Marley. It is her story about how she cared for her significant other. They lived in Cincinnati, Ohio, but then after his death she moved to Leawood, Ks., and is a grant writer for the American Academy of Family Physicians. One statement she made in the book particularly struck me. It said "It is one thing to know they can't help it, but another to stand there and take it."
Another resource for me, and please don't laugh, is Facebook. It makes me feel connected to the world, when things in the world at home don't make sense. But when we watch the news, I think the whole world has gone crazy!
I also "like" the Alzheimer's Reading Room on Facebook and read their posts. One post recently said to "Start living your life the way you always did." I would like to revise that to "Keep living your life the way you always did." They say to merge the world he lives in with the world you live in and try to make concessions to each. Easier said than done, I might add.
The GPS that I got for him to keep in his pocket that has an app to my phone so I could track him if he would start to wander has been fairly successful. But I told him never to push the button that is the panic button, as I can see him pressing it and telling the responder he wanted to order a pizza. But he has pushed it a couple of times "just to see if it works", and a nice young man has always answered. Fortunately I have been there both times to talk to the man, or the conversation could have gone on for hours....I think now I have impressed on him not to touch it. He has also lost the medic alert bracelet, and I have looked for it for days, but finally ordered another one. He hides things to keep them safe. I tried to get in his world like the Alzheimer's Reading Room said, and ask, "Now if I were him, where would I have hidden it??" But that didn't work!
He hasn't started to wander at all yet, but the other evening wanted to come to my yoga class with me.
I told him no, I was just going to yoga. He said, "Well, I could sit in the audience." I am sure the yogis in the room would appreciate that! Especially if he started to whistle at them!
Last, but not least, is the support of family and friends. Last weekend a couple that we have known for years, and worked with at the hospital came to visit for the weekend. The husband also has Alzheimer's about the same stage as Bob. The wife was able to go to the support group with me, and really enjoyed it. The social worker that leads it looks like a young thing that shouldn't leave her mother, but she is very knowledgeable about the resources in this area and it is a great group. A very quiet little man that always comes and brings treats shared this time that he watches girly movies to keep his mind off "things" and he had everyone in stitches! Then he sweetly turned to the man next to him whose turn it was to speak and said, "Top that!" The laughter started again--very therapeutic, I will say! And that was one of his resources! Anyway, back to our friends visit. The husband never has talked much, but he was patient enough to sit and have Bob talk at him for hours. Thank you Len! And it gave the ladies time to talk, and share our stories!
And the greatest resource of all:
God has not promised skies always blue,
flower-strewn pathways all our lives through,
God has not promised sun without rain,
joy without sorrow, peace without pain.
But God has promised, strength for the day,
rest for the labor, light for the way,
Grace for the trials, help from above,
unfailing sympathy, undying love.
-Annie Johnson Flint
Whoever you are, whatever trials you face (they might be totally different from mine)
Hang in there, my friend.
Betty
I have read several books lately and they each in their own way offer nuggets of inspiration. The #1 book I recommend is "Being Mortal" by Atol Gawande. He is a surgeon from India and addresses the "golden years" concerns from places to reside to the physical end of life issues, and gives case studies for each to keep it interesting. Every physician and medical student should be required to read this book.
The second book is "The 36-Hour Day" by Nancy L. Mace, MAand Peter V. Rabins, MD. It is "a family guide to caring for people who have Alzheimer's disease, related dementias, and memory loss."
The third book is "Come back early today" by Marie Marley. It is her story about how she cared for her significant other. They lived in Cincinnati, Ohio, but then after his death she moved to Leawood, Ks., and is a grant writer for the American Academy of Family Physicians. One statement she made in the book particularly struck me. It said "It is one thing to know they can't help it, but another to stand there and take it."
Another resource for me, and please don't laugh, is Facebook. It makes me feel connected to the world, when things in the world at home don't make sense. But when we watch the news, I think the whole world has gone crazy!
I also "like" the Alzheimer's Reading Room on Facebook and read their posts. One post recently said to "Start living your life the way you always did." I would like to revise that to "Keep living your life the way you always did." They say to merge the world he lives in with the world you live in and try to make concessions to each. Easier said than done, I might add.
The GPS that I got for him to keep in his pocket that has an app to my phone so I could track him if he would start to wander has been fairly successful. But I told him never to push the button that is the panic button, as I can see him pressing it and telling the responder he wanted to order a pizza. But he has pushed it a couple of times "just to see if it works", and a nice young man has always answered. Fortunately I have been there both times to talk to the man, or the conversation could have gone on for hours....I think now I have impressed on him not to touch it. He has also lost the medic alert bracelet, and I have looked for it for days, but finally ordered another one. He hides things to keep them safe. I tried to get in his world like the Alzheimer's Reading Room said, and ask, "Now if I were him, where would I have hidden it??" But that didn't work!
He hasn't started to wander at all yet, but the other evening wanted to come to my yoga class with me.
I told him no, I was just going to yoga. He said, "Well, I could sit in the audience." I am sure the yogis in the room would appreciate that! Especially if he started to whistle at them!
Last, but not least, is the support of family and friends. Last weekend a couple that we have known for years, and worked with at the hospital came to visit for the weekend. The husband also has Alzheimer's about the same stage as Bob. The wife was able to go to the support group with me, and really enjoyed it. The social worker that leads it looks like a young thing that shouldn't leave her mother, but she is very knowledgeable about the resources in this area and it is a great group. A very quiet little man that always comes and brings treats shared this time that he watches girly movies to keep his mind off "things" and he had everyone in stitches! Then he sweetly turned to the man next to him whose turn it was to speak and said, "Top that!" The laughter started again--very therapeutic, I will say! And that was one of his resources! Anyway, back to our friends visit. The husband never has talked much, but he was patient enough to sit and have Bob talk at him for hours. Thank you Len! And it gave the ladies time to talk, and share our stories!
And the greatest resource of all:
God has not promised skies always blue,
flower-strewn pathways all our lives through,
God has not promised sun without rain,
joy without sorrow, peace without pain.
But God has promised, strength for the day,
rest for the labor, light for the way,
Grace for the trials, help from above,
unfailing sympathy, undying love.
-Annie Johnson Flint
Whoever you are, whatever trials you face (they might be totally different from mine)
Hang in there, my friend.
Betty
Monday, February 1, 2016
In my last post I talked about how I was getting concerned that Bob was getting separated from me when we traveled. I had to have constant vigilance, but it was when we had to go to separate restrooms that there was a problem. Then on the news I heard of an Alzheimer's patient that wandered out of her home one night and froze to death. I am still very blessed as Bob has never showed any signs that he will wander and I can leave him and go on errands or go to lunch with a friend and he never has left the house. But there is always a first time, so I decided to be proactive with his safety. I purchased a home alarm when he was first diagnosed, and a couple of nights recently he has stayed up all night, saying he had to go to work. So I just set the alarm as I do every night and went to bed and went to sleep, because if he would go out, it would set off the alarm. And he never disturbs anything in the house. The social worker at the Alzheimer's center also recommended we both get medic alert bracelets, as what if something happened to me when I was gone, such as a car accident? My bracelet says "caregiver" and the emergency numbers so emergency personnel would know someone that needed me was at home. And recently our daughter Valerie asked that I set up an "emergency response team" so that, God forbid, I had to be rushed to the hospital in an ambulance, that she could call one of the people on the list, and they would come and stay with Bob for the 5 or so hours until she could get here from St. Louis. And I went even further. I just purchased a GPS device, which is connected to an app on my phone, that if he were to leave the house, or gets lost when we travel, I could find him. He wears the bracelet with no problem, so I am hopeful he will be able to keep this in his pocket. I think he knows on some level that he is safe in the house, but when I leave he ALWAYS says to me "Be careful, I need you". So he also realizes that he needs me to care for him.
People ask what he does when I go out. I have no way of knowing unless I purchase a babysitter cam, but I think he either naps or watches TV! The house is always in order, and the papers that were maybe strewn on the desk or table are neatly straightened up! The Alzheimer's Association says not to use the TV as a "babysitter" but since he doesn't read anymore, it occupies his time, and he seems to enjoy it. I used to turn on CNN, as he loved that, but the news seemed to make him more agitated (doesn't it do that to everyone?!) and he would focus on Putin for hours after he heard his name. So I turn on the easy listening music channel now. He loves that, and loves the facts that are displayed with each song. Bob has always liked music, and seems to like it even more now, which I have read is common with Alzheimer's patients. It clicks with something deep in their brain, and maybe even revives memories associated with the songs.
I read this recently and I love it. Alzheimer's patients are deeply forgetful, and even though they have don't have memory, they still have feelings. I am going to close with something our pastor Douglas Elsey sent me. It is beautiful. Thank you so much, Pastor Elsey!
IF ALZHEIMER'S COULD SPEAK
Talk to me:
I can hear your words and they touch my soul
Smile at me:
My eyes can see you and feel your heart, even when I can't remember how to smile back
Hold my hand:
I can feel your energy when our hands connect and it makes me feel safe and less alone
Live your life:
Help me on my path, but don't press "pause" on your life. Be the vibrant person I know and love
Trust the process
I know this is hard and not what we planned but trust the process. We can't control it, but we can choose our focus. Remember the good times. Know that I am OK and that you are in my heart always.
I love you Bob,
Betty
People ask what he does when I go out. I have no way of knowing unless I purchase a babysitter cam, but I think he either naps or watches TV! The house is always in order, and the papers that were maybe strewn on the desk or table are neatly straightened up! The Alzheimer's Association says not to use the TV as a "babysitter" but since he doesn't read anymore, it occupies his time, and he seems to enjoy it. I used to turn on CNN, as he loved that, but the news seemed to make him more agitated (doesn't it do that to everyone?!) and he would focus on Putin for hours after he heard his name. So I turn on the easy listening music channel now. He loves that, and loves the facts that are displayed with each song. Bob has always liked music, and seems to like it even more now, which I have read is common with Alzheimer's patients. It clicks with something deep in their brain, and maybe even revives memories associated with the songs.
I read this recently and I love it. Alzheimer's patients are deeply forgetful, and even though they have don't have memory, they still have feelings. I am going to close with something our pastor Douglas Elsey sent me. It is beautiful. Thank you so much, Pastor Elsey!
IF ALZHEIMER'S COULD SPEAK
Talk to me:
I can hear your words and they touch my soul
Smile at me:
My eyes can see you and feel your heart, even when I can't remember how to smile back
Hold my hand:
I can feel your energy when our hands connect and it makes me feel safe and less alone
Live your life:
Help me on my path, but don't press "pause" on your life. Be the vibrant person I know and love
Trust the process
I know this is hard and not what we planned but trust the process. We can't control it, but we can choose our focus. Remember the good times. Know that I am OK and that you are in my heart always.
I love you Bob,
Betty
Sunday, January 17, 2016
We have just come back from a 3 week trip to visit the grandkids in Chattanooga, TN and St. Louis, Mo. (We used to go to Calcutta, now we go to Chattanooga!) It is getting a little more challenging to travel, as when we stop for gas and a restroom, or in a museum, And if Bob finishes first, he takes off...I wish there were more family style restrooms. But on the way home I tried going in with him, and then taking him back out to sit in the car while I went to the restroom, and he will stay in the car.
And in one museum, I asked the lady at the desk to let him talk to her (not her talk to him) while I looked around and she graciously agreed and he talked her ear off. He loves to talk, and while at our daughter's home in St. Louis, Bob whispered confidentially to our son-in-law that the "big shots" didn't wear underwear. He said they autographed the underwear and sold it for a big profit...
In this blog, I am going to talk about the changes he is undergoing. The best video I have ever watched about Alzheimer's explains that as the plaque builds up in different areas of the brain, the symptoms consistent to that area's function are affected. Now, let me make one thing clear! I am NOT a psychiatric nurse, but I have great admiration for my friends who are. Our "psych" rotation was at a 3000 bed state hospital in Maryland and it was enough to almost make me quit nursing. Bob and I were dating seriously and I called him one evening and told him I was quitting nursing as "I didn't know they did stuff like that to people". But he was able to talk me out of it--more about that later. Most of Bob's changes now have to do with sensory perceptions. And it is weird--the symptoms go in cycles, disappear, and then reappear. His sense of touch is greater and he will rub a piece of fabric for example and exclaim over how good it feels, but then feel like bugs are crawling all over him. His sense of taste and smell is different and foods he used to love, he will take one sniff, and decide not to eat it. He also exhibits the different classifications of psychiatry, which is logical as it is the same brain we are talking about. There is OCD--obsessive compulsive disorder. Every spot of water on every sink has to be removed which translates into rolls of paper towels. There is paranoia--he wears his jacket continually in the house as it contains at least 10 writing pens, and if he doesn't wear it "the other people in the house will steal all my pens." (There are no other people living in the house). And he hides things so neither of us can find them! There is schizophrenia--the gentle Bob who NEVER raised his voice at me can have an angry outburst one minute, and then like flipping a switch, he is meek and compliant again. I once saw a patient in ICU (suicide attempt) whose heart rate on the monitor would change dramatically as she went in and out of her multiple personalities. Depression--I can't say I see what I would call depression, but at the suggestion of my mental health nurse friends, I asked the doctor to order an antidepressant, and that has seemed to help more than any other thing. And the antidepressant that I take has also helped immensely, and I am very thankful that after much debate on my part, I started taking it.
Now back to the state mental hospital in Maryland, which ironically was in a town called Sykesville!
I was assigned to the acute care ward, where the burly techs chase the patient, tie them down, and with no sedation, the electric current was applied as the patients screamed for all they were worth. It is called ECT--electro convulsive therapy--as they go into severe convulsions where you think they will break their back. I almost vomited and fainted the first time I saw it, and had to leave the room. BUT it is coming back into vogue, and my nurse friends tell me it helps depression more than anything else. So, before I retired, I learned they were using it at the hospital where I worked. They did it at 0500 in the post anesthesia care unit before the surgery day started, and an anesthesiologist was present to provide sedation. He would provide sedation, then paralyze the patient so not even a finger wiggled, and then the shock was applied, the paralysis was reversed with another medication and the patients woke right up with no side effects (except loss of long term memory). I was standing there watching, and all the nurse's favorite psychiatrist, Dr. Pol, came up to me and put his arm around me and said "It isn't like it used to be, is it Betty?" He was also a mindreader!
I tell this story because several people have sent me a link. It is about on-going trials in Australia where electrical impulses are being applied in small doses to brains of Alzheimer's patients to dissolve the plaque. It has gone through mice, now they are testing sheep, and it will be ready for human trials in 2017. It is helping more than any medication that has been tried. I am a little reticent to get excited however, even if it seems very logical. Bob's neurologist told us in November that we were basically out of options; that Bob was too far along. He said their research had developed a medication that with post administration testing last year, they found it had dissolved the plaque in their patients, but the symptoms didn't disappear (maybe the brain was already too damaged?) So this year they are trying it on patients just developing the symptoms to see if it helps with earlier administration.
Another thing that has helped is a product from Natural Balance called Happy Sleeper. It is a mixture of 3 mg. of Melatonin and Valerian root, which potentiates the Melatonin. It is available at health food stores or I get it from Amazon, which is cheaper. He takes 2 capsules nightly. He has never been a good sleeper, but this really seems to help. And when we cuddle up in bed at night, troubles of the day seem to fade away....
Happy New Year!
Betty
And in one museum, I asked the lady at the desk to let him talk to her (not her talk to him) while I looked around and she graciously agreed and he talked her ear off. He loves to talk, and while at our daughter's home in St. Louis, Bob whispered confidentially to our son-in-law that the "big shots" didn't wear underwear. He said they autographed the underwear and sold it for a big profit...
In this blog, I am going to talk about the changes he is undergoing. The best video I have ever watched about Alzheimer's explains that as the plaque builds up in different areas of the brain, the symptoms consistent to that area's function are affected. Now, let me make one thing clear! I am NOT a psychiatric nurse, but I have great admiration for my friends who are. Our "psych" rotation was at a 3000 bed state hospital in Maryland and it was enough to almost make me quit nursing. Bob and I were dating seriously and I called him one evening and told him I was quitting nursing as "I didn't know they did stuff like that to people". But he was able to talk me out of it--more about that later. Most of Bob's changes now have to do with sensory perceptions. And it is weird--the symptoms go in cycles, disappear, and then reappear. His sense of touch is greater and he will rub a piece of fabric for example and exclaim over how good it feels, but then feel like bugs are crawling all over him. His sense of taste and smell is different and foods he used to love, he will take one sniff, and decide not to eat it. He also exhibits the different classifications of psychiatry, which is logical as it is the same brain we are talking about. There is OCD--obsessive compulsive disorder. Every spot of water on every sink has to be removed which translates into rolls of paper towels. There is paranoia--he wears his jacket continually in the house as it contains at least 10 writing pens, and if he doesn't wear it "the other people in the house will steal all my pens." (There are no other people living in the house). And he hides things so neither of us can find them! There is schizophrenia--the gentle Bob who NEVER raised his voice at me can have an angry outburst one minute, and then like flipping a switch, he is meek and compliant again. I once saw a patient in ICU (suicide attempt) whose heart rate on the monitor would change dramatically as she went in and out of her multiple personalities. Depression--I can't say I see what I would call depression, but at the suggestion of my mental health nurse friends, I asked the doctor to order an antidepressant, and that has seemed to help more than any other thing. And the antidepressant that I take has also helped immensely, and I am very thankful that after much debate on my part, I started taking it.
Now back to the state mental hospital in Maryland, which ironically was in a town called Sykesville!
I was assigned to the acute care ward, where the burly techs chase the patient, tie them down, and with no sedation, the electric current was applied as the patients screamed for all they were worth. It is called ECT--electro convulsive therapy--as they go into severe convulsions where you think they will break their back. I almost vomited and fainted the first time I saw it, and had to leave the room. BUT it is coming back into vogue, and my nurse friends tell me it helps depression more than anything else. So, before I retired, I learned they were using it at the hospital where I worked. They did it at 0500 in the post anesthesia care unit before the surgery day started, and an anesthesiologist was present to provide sedation. He would provide sedation, then paralyze the patient so not even a finger wiggled, and then the shock was applied, the paralysis was reversed with another medication and the patients woke right up with no side effects (except loss of long term memory). I was standing there watching, and all the nurse's favorite psychiatrist, Dr. Pol, came up to me and put his arm around me and said "It isn't like it used to be, is it Betty?" He was also a mindreader!
I tell this story because several people have sent me a link. It is about on-going trials in Australia where electrical impulses are being applied in small doses to brains of Alzheimer's patients to dissolve the plaque. It has gone through mice, now they are testing sheep, and it will be ready for human trials in 2017. It is helping more than any medication that has been tried. I am a little reticent to get excited however, even if it seems very logical. Bob's neurologist told us in November that we were basically out of options; that Bob was too far along. He said their research had developed a medication that with post administration testing last year, they found it had dissolved the plaque in their patients, but the symptoms didn't disappear (maybe the brain was already too damaged?) So this year they are trying it on patients just developing the symptoms to see if it helps with earlier administration.
Another thing that has helped is a product from Natural Balance called Happy Sleeper. It is a mixture of 3 mg. of Melatonin and Valerian root, which potentiates the Melatonin. It is available at health food stores or I get it from Amazon, which is cheaper. He takes 2 capsules nightly. He has never been a good sleeper, but this really seems to help. And when we cuddle up in bed at night, troubles of the day seem to fade away....
Happy New Year!
Betty
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