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
Friday, August 19, 2016
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
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