These episodes happened when we traveled to Branson, MO in mid-November. We try to go there during the Christmas season as all the music shows are doing their Christmas shows, and the theme park Silver Dollar City is all decorated for Christmas, so it is a very festive time. We were driving back to the condo where we were staying late one evening after seeing the Oak Ridge Boys (who I must say, are not boys any longer). Bob said to me, "You know, I like you." I responded "Oh, good, but I hope you don't just like me, I hope you love me." He said "No, I love my wife Betty, but I like you". I thought to myself, whew, "I don't have to worry about the 'other woman'. I am that woman, and I know her well". A few nights later we had gone to the Pierce Arrow show with some friends, and we were waiting under umbrellas in the pouring rain after the show, waiting for him to get the car. A man walked up to us and Bob said, "Well hello Mr. Blair, what are you doing here?" I looked at "Mr. Blair" and thought "Surely not. This can't be Mr. Blair, it is just someone that looks like him. Mr. Blair lives in Florida and is 80-plus years old and wouldn't be in Branson". But then Mrs. Blair (Joanne) walked up and then I knew it had to be them! I was busy picking my jaw up from the ground and trying to talk to Joanne, while Bob and Mr. Blair chatted, but then our ride came and we couldn't hold up traffic, so we had to run. Mr. Blair was the administrator of the hospital where we worked 53 years ago right after we got married! But Bob has seen him a lot over the ensuing years, and has done some projects and events with him, so he has seen him since. But I called a mutual friend for his phone number, and called him and told him how honored he should be that Bob remembered him, as he didn't know me a few nights before! The mind is a very strange thing!
So in this blog I would like to talk about Alzheimer's communication. May I add that these 10 points are easier said than done. This is an Alzheimer's blog, but they would mostly certainly work for a marriage counseling blog as well. It is good to close your mouth firmly (it also helps if you have a mouthful of water) so you can't retort when you want to! Or walk in another room for a few minutes-BIG YOGA BREATH! Count to ten! Since we never used to fight, remembering to do these is taking some getting used to for me....I have printed them off, and keep them in several places.
1. Never argue, instead agree (even if he says the moon is made of blue cheese)
2. Never reason, instead divert. In a patient with Alzheimer's they have lost their ability to reason.
3. Never shame, instead distract. Again, easier said than done to try to distract them!
4. Never lecture, instead reassure. Save your breath!
5. Never say "remember", instead reminisce. Bob loves to do this, talking about his grandma.
6. Never say "I told you", instead repeat/regroup. And it may take 100 times of repeating!
7. Never say "You can't, instead do what they can. "What they can" may be now greatly modified
8. Never command/demand, instead ask/model. I try to lay out the type of clothes he needs to put on
9. Never condescend, instead encourage. Saying "It will be OK" usually works
10. Never force, instead reinforce. I allow extra time for everything so he is not forced to hurry
I went to the support group yesterday. One man was telling how it is so difficult now, not being able to have a conversation with his wife. He said he was usually the quiet one, but now he so longs for a meaningful conversation that when he gets out, he just chatters. Several agreed with him, including me. But then another man in the group broke down and cried. When he could speak he said "Be grateful for what you have now. It is only going to get worse". He went on to say that his wife has frontal lobe dementia which is different from Alzheimer's and all she can say now is "We can do this"--which was something she said often when she could fully communicate. That really hit home..
Bob and I are getting ready to travel again. I miss the conversations we used to have in the car. Those were some of the best, in our own little world with no distractions. We also made some of our best decisions then. We are going to Graceland for Christmas and tour the Elvis mansion all decorated for Christmas (don't laugh, it is on my bucket list!) and stay at the Heartbreak Hotel! They even make snow, if none has fallen, so we will have a white Christmas instead of a blue one that Elvis used to sing about. Don't worry about us--WE CAN DO THIS, and I want to while we still can!
Merry Christmas to all and I will talk to you again in the New Year!
Saturday, December 12, 2015
Saturday, November 21, 2015
I am afraid this may be a long post, but I don't want to split it up, so I hope you will bear with me through to the end. This will be a difficult subject to approach, and I realize it will be controversial, but I welcome your comments, pro and con, either on Facebook, by email, or on this blog.
About a year and a half ago when our travels started to lessen (we used to go to Botswana, now we go to Branson!) we started attending our home church again. The associate pastor gave a sermon about faith, and how if we believe anything hard enough it will come to pass. She gave many Biblical texts, such as if we have faith the size of a mustard seed it would move mountains, and cited examples like the battle of Jericho. I struggled with this long enough that I finally made an appointment to see her for a friendly discussion (I assured her!). She remembered the sermon well, as it hadn't been that long. She said some of the church members interpreted it to mean that if we had enough faith, we could eliminate the church debt. To them I would answer "faith without works is dead"! But I told her I had other questions, ones that she had not addressed in the sermon. What if I were to pray fervently that Bob would be healed, but healing did not come? I told her that maybe my experiences as a nurse made me form my opinions, and I could not get over that. I have seen so many fervent prayers in the hospital over the years for babies and children all the way up to 95 year olds for healing. "Doctor, yes granny is 95 years old, but please put her on the ventilator and do everything possible while we pray for a miracle". And the whole church it seemed was there praying on these occasions, and the patient still died, be it a one year old or 95 years old. And what about the examples that my good friends who are atheists cite--why did God allow the holocaust to happen? Yes, I know Satan is hard at work in this old world, but couldn't God have rescued just the one Syrian refugee child found dead on the beach? I have read and reread the book "When bad things happen to good people" by Harold S. Kushner and hope we fall under the "good people" category! Anyway, the pastor said yes, she was sorry she didn't address the subject of healing, but there are 3 ways people are healed. First, there is a miracle and the person is healed right away. Secondly God says "wait awhile" and the healing comes later. And third, God says no, but the person is healed when the earth is made new and we go to heaven. I thanked her, we had prayer, and we left.
It was not long after this that something else happened. I stopped at Holiday cleaners (and this is a non paid commercial) near Shawnee Mission Parkway and Nieman. I had stopped there weekly over the years to drop off Bob's shirts on my way home from work. The Kim family runs the business, and I cannot say enough good about them. The mother and I had developed a real friendship, as at that time of day she was not busy and had time to talk. But her English was halting, so there were a lot of hand gestures in our conversations. Their story, and how they came to own the business is amazing. They came from South Korea, and the father is a Korean pastor, and someone in Kansas sponsored them. Well, they put their daughter Esther, born in Korea, through law school, and now she is helping run the business but is also studying to be a counselor, which I am sure she was meant to be. She speaks impeccable English, so now I could understand more of their story. This particular day, both the mother and daughter came out to the car to say "hi" to Bob and something must have impressed them. They both laid hands on Bob, and in the most pleading voices, implored God to straighten out the tangles in Bob's brain, and make him whole again. I have never heard such prayers. Then they sang a wonderful song. Bob and I then drove on to West Flanders park where we have walked on the walking trail for many years. Bob will no longer walk, but he will sit on a bench while I do. I started off, and there on the sidewalk it was written in chalk in big letters GOD LOVES YOU. I was already teary from the encounter at the dry cleaners, and this just reinforced it!
So, at the risk of sounding naive, I have come to the conclusion that faith is the "substance of things hoped for, the evidence of things not seen". Hebrews 11:1 But I am a "get it done" person, and I want everything to happen right now, and it produces stress when it doesn't! But, faith reassures us that everything will happen in God's timing. The serenity prayer has become my mantra!
So, as the song says "His eye is on the sparrow" and I cannot help but believe that Bob is more valuable than a sparrow, so he will have to be in God's hands. We will walk the pathway God has chosen for us.
This thanksgiving I am thankful for so many big things. Chief among them:
1. Family and friends
2. A new support group that is awesome (and I hope are reading my blog)
And the little things:
1. The leaves this fall seem especially colorful
2. New healthful recipes I have been trying that we both are enjoying!
I want to wish all of you a very happy Thanksgiving,
Betty
About a year and a half ago when our travels started to lessen (we used to go to Botswana, now we go to Branson!) we started attending our home church again. The associate pastor gave a sermon about faith, and how if we believe anything hard enough it will come to pass. She gave many Biblical texts, such as if we have faith the size of a mustard seed it would move mountains, and cited examples like the battle of Jericho. I struggled with this long enough that I finally made an appointment to see her for a friendly discussion (I assured her!). She remembered the sermon well, as it hadn't been that long. She said some of the church members interpreted it to mean that if we had enough faith, we could eliminate the church debt. To them I would answer "faith without works is dead"! But I told her I had other questions, ones that she had not addressed in the sermon. What if I were to pray fervently that Bob would be healed, but healing did not come? I told her that maybe my experiences as a nurse made me form my opinions, and I could not get over that. I have seen so many fervent prayers in the hospital over the years for babies and children all the way up to 95 year olds for healing. "Doctor, yes granny is 95 years old, but please put her on the ventilator and do everything possible while we pray for a miracle". And the whole church it seemed was there praying on these occasions, and the patient still died, be it a one year old or 95 years old. And what about the examples that my good friends who are atheists cite--why did God allow the holocaust to happen? Yes, I know Satan is hard at work in this old world, but couldn't God have rescued just the one Syrian refugee child found dead on the beach? I have read and reread the book "When bad things happen to good people" by Harold S. Kushner and hope we fall under the "good people" category! Anyway, the pastor said yes, she was sorry she didn't address the subject of healing, but there are 3 ways people are healed. First, there is a miracle and the person is healed right away. Secondly God says "wait awhile" and the healing comes later. And third, God says no, but the person is healed when the earth is made new and we go to heaven. I thanked her, we had prayer, and we left.
It was not long after this that something else happened. I stopped at Holiday cleaners (and this is a non paid commercial) near Shawnee Mission Parkway and Nieman. I had stopped there weekly over the years to drop off Bob's shirts on my way home from work. The Kim family runs the business, and I cannot say enough good about them. The mother and I had developed a real friendship, as at that time of day she was not busy and had time to talk. But her English was halting, so there were a lot of hand gestures in our conversations. Their story, and how they came to own the business is amazing. They came from South Korea, and the father is a Korean pastor, and someone in Kansas sponsored them. Well, they put their daughter Esther, born in Korea, through law school, and now she is helping run the business but is also studying to be a counselor, which I am sure she was meant to be. She speaks impeccable English, so now I could understand more of their story. This particular day, both the mother and daughter came out to the car to say "hi" to Bob and something must have impressed them. They both laid hands on Bob, and in the most pleading voices, implored God to straighten out the tangles in Bob's brain, and make him whole again. I have never heard such prayers. Then they sang a wonderful song. Bob and I then drove on to West Flanders park where we have walked on the walking trail for many years. Bob will no longer walk, but he will sit on a bench while I do. I started off, and there on the sidewalk it was written in chalk in big letters GOD LOVES YOU. I was already teary from the encounter at the dry cleaners, and this just reinforced it!
So, at the risk of sounding naive, I have come to the conclusion that faith is the "substance of things hoped for, the evidence of things not seen". Hebrews 11:1 But I am a "get it done" person, and I want everything to happen right now, and it produces stress when it doesn't! But, faith reassures us that everything will happen in God's timing. The serenity prayer has become my mantra!
So, as the song says "His eye is on the sparrow" and I cannot help but believe that Bob is more valuable than a sparrow, so he will have to be in God's hands. We will walk the pathway God has chosen for us.
This thanksgiving I am thankful for so many big things. Chief among them:
1. Family and friends
2. A new support group that is awesome (and I hope are reading my blog)
And the little things:
1. The leaves this fall seem especially colorful
2. New healthful recipes I have been trying that we both are enjoying!
I want to wish all of you a very happy Thanksgiving,
Betty
Monday, November 9, 2015
I have not written a new post for awhile as we have been traveling. Travels can turn into travails, but this was a very nice road trip, and the fall colors were in all their glory, in various stages as we went through mountain, plains, etc. We cannot fly anymore, as Bob is sure he knows which gate we leave from (not the right one ever) and is sure he can get up during the flight even if the "fasten seat belt" sign is on, and cannot be dissuaded otherwise on either of these things. But riding in the car with easy listening music on is very peaceful and he can nap easily. (I drink coffee to stay awake then, or crunch on ice, or eat celery sticks!) I had a music station on Sirius XM this time that was NOT easy listening, and it had quite a beat to it. I was jigging my head to the music and he said "I don't jiggle my head around like that. I am very careful with my brain, and how I use it and who I use it on." LOL! Another one of his sayings that makes me giggle is when people ask him how he is doing and he replies "I am just as happy as if I had good sense".
Last year at this time we were traveling Scottsdale, AZ where the grandkids lived then, back to KC. We had never seen Carlsbad Caverns in New Mexico and it was on my bucket list, so we took a more southerly route to divert and see them. We were walking along the mile long roped off path through the Caverns and I stopped to take a picture. For those of you who know me well, imagine that! I turned around after taking the picture and he was GONE! I called out and only got the echo in response. I thought maybe he had gone ahead and needed to use the restroom, so he was walking faster, and he would have had to stay on the trail (hopefully!) I kept asking Park Rangers I came to if they had seen him and they all said they had; there weren't many people there that day. I got to the end, and got to the underground lobby area and called into the men's restroom, but there was no answer. Now I was really panicked! I didn't think he would have gotten on the elevator, but I got on and went up the 70 stories to the main entrance. There he was, telling a Park Ranger that he had lost his wife. Such relief flooded over me. I went up to Bob and said, "Well! I have lost my husband, so why don't we get together?" And off we went, as the Ranger winked at me! Needless to say I am more careful now to keep him in my sights! I have gotten bracelets for both of us to wear with phone and contact info. His says "Alzheimer's" and mine says "Caregiver". I didn't think he would wear his, but since I have bragged that we have matching bracelets, he will wear it. Since I am still able to go out and run errands etc. and leave him at home, I got to thinking what would happen if something happened to me while I was out, like an auto accident. If I wasn't able to speak, no one would know there was someone at home that needed help, until they got ahold of our daughter, the emergency contact. The Alzheimer's Association says 60% of Alzheimer's patients wander (my dad did). But Bob seems very content to stay home and watch TV, and nothing is amiss when I return home. He has NEVER in this life touched the stove, so why would he now?! It may change at some point that I am unable to leave him, and then will have to have someone come in to sit with him. I have already had people volunteer to do this! But for now, it is a huge blessing to be able to go out, and even have lunch with friends.
Anyway, this trip we went to Chattanooga, TN where the grandkids that lived in AZ moved last summer. My parents had retired near there, so it deja vu going back there, and seeing all the familiar things. We watched the grandkids while our daughter-in-law went to a convention in Phoenix, of all places! (I miss traveling to AZ!) Things went pretty well until near bedtime, when Bob starts having sundown syndrome, the 6 year old is so tired she is grumpier than a bear coming out of hibernation, the 12 year old granddaughter needs help taking the new Bichon Poo puppy out, and I am trying to convince the 14 year old grandson to find the channel the KC Royals championship games are on so I can at least listen to them! I feel like a need the arms of an octopus! And brain of something bigger than me, like an elephant!
The hardest part was when our son who lives in Nashville joined us for a family birthday dinner on the last evening. The grandkids cannot remember the cardinal rule of Alzheimer's communication--"Never argue, instead agree." But they told Pop Pop that Ron was his son, and Bob would not agree to that. He kept saying "That is not my son". And they could not understand why he couldn't understand that. I finally was able to divert the conversation to another subject. When the grandkids were toddlers, that was the key word Bob and I used, "DIVERT!" It helps in a lot of situations now!
We stopped in St. Louis on the way back where our other grandson lives. He is 11, and has perfected the science of dealing with Pop Pop. He was on his device the whole time Bob talked to him--for 2 solid hours nonstop--and had Bob totally tuned out! I went in the room at one point and Jaden looked up at me and grinned sheepishly!
So we are home and back to familiar surroundings, and back to our regular routine, which helps!
Happy trails,
Betty
Last year at this time we were traveling Scottsdale, AZ where the grandkids lived then, back to KC. We had never seen Carlsbad Caverns in New Mexico and it was on my bucket list, so we took a more southerly route to divert and see them. We were walking along the mile long roped off path through the Caverns and I stopped to take a picture. For those of you who know me well, imagine that! I turned around after taking the picture and he was GONE! I called out and only got the echo in response. I thought maybe he had gone ahead and needed to use the restroom, so he was walking faster, and he would have had to stay on the trail (hopefully!) I kept asking Park Rangers I came to if they had seen him and they all said they had; there weren't many people there that day. I got to the end, and got to the underground lobby area and called into the men's restroom, but there was no answer. Now I was really panicked! I didn't think he would have gotten on the elevator, but I got on and went up the 70 stories to the main entrance. There he was, telling a Park Ranger that he had lost his wife. Such relief flooded over me. I went up to Bob and said, "Well! I have lost my husband, so why don't we get together?" And off we went, as the Ranger winked at me! Needless to say I am more careful now to keep him in my sights! I have gotten bracelets for both of us to wear with phone and contact info. His says "Alzheimer's" and mine says "Caregiver". I didn't think he would wear his, but since I have bragged that we have matching bracelets, he will wear it. Since I am still able to go out and run errands etc. and leave him at home, I got to thinking what would happen if something happened to me while I was out, like an auto accident. If I wasn't able to speak, no one would know there was someone at home that needed help, until they got ahold of our daughter, the emergency contact. The Alzheimer's Association says 60% of Alzheimer's patients wander (my dad did). But Bob seems very content to stay home and watch TV, and nothing is amiss when I return home. He has NEVER in this life touched the stove, so why would he now?! It may change at some point that I am unable to leave him, and then will have to have someone come in to sit with him. I have already had people volunteer to do this! But for now, it is a huge blessing to be able to go out, and even have lunch with friends.
Anyway, this trip we went to Chattanooga, TN where the grandkids that lived in AZ moved last summer. My parents had retired near there, so it deja vu going back there, and seeing all the familiar things. We watched the grandkids while our daughter-in-law went to a convention in Phoenix, of all places! (I miss traveling to AZ!) Things went pretty well until near bedtime, when Bob starts having sundown syndrome, the 6 year old is so tired she is grumpier than a bear coming out of hibernation, the 12 year old granddaughter needs help taking the new Bichon Poo puppy out, and I am trying to convince the 14 year old grandson to find the channel the KC Royals championship games are on so I can at least listen to them! I feel like a need the arms of an octopus! And brain of something bigger than me, like an elephant!
The hardest part was when our son who lives in Nashville joined us for a family birthday dinner on the last evening. The grandkids cannot remember the cardinal rule of Alzheimer's communication--"Never argue, instead agree." But they told Pop Pop that Ron was his son, and Bob would not agree to that. He kept saying "That is not my son". And they could not understand why he couldn't understand that. I finally was able to divert the conversation to another subject. When the grandkids were toddlers, that was the key word Bob and I used, "DIVERT!" It helps in a lot of situations now!
We stopped in St. Louis on the way back where our other grandson lives. He is 11, and has perfected the science of dealing with Pop Pop. He was on his device the whole time Bob talked to him--for 2 solid hours nonstop--and had Bob totally tuned out! I went in the room at one point and Jaden looked up at me and grinned sheepishly!
So we are home and back to familiar surroundings, and back to our regular routine, which helps!
Happy trails,
Betty
Sunday, October 11, 2015
Yay! I was able to change the picture on the blog! Don't ask me how I did it, I have no idea!
Let me start this blog about things we have tried by saying that after reading all the testimonials, that I have come to the conclusion that what helps one person may not help another. Or it is in a different stage of the disease that it helps, or may be more of a preventative measure than something that helps after the disease has developed.
Bob is very sensitive to medications. First of all, he has never taken any. So when the the primary care doctor we were going to at the time (the year 2000) recommended that he take a statin just as a prophylactic measure I was quite hesitant. His cholesterol and trigylceride levels were all normal. But we started it. It was a year later I started to notice the changes in his memory so I immediately stopped it. There were studies out at the time that statins were shown to cause memory loss. (I have taken statins for years for what I think is a hereditary elevated cholesterol and have had no side effects at all). And here I digress to get on my soapbox. These were the good ole days for the drug reps. They were the people dressed immaculately that you saw coming in and out of doctor's offices while you waited impatiently for your appointment. The more the doctor ordered patients the product the more perks they got--free golfing, free trips etc. I won't say I didn't enjoy those perks as well--lavish foods at the nursing stations, and free samples of medications that saved me a ton of money since I didn't have to buy them. So doctors were freely ordering medications they probably shouldn't have. That has thankfully changed with new regulations in place. I can't say that is what caused his problems, but have often wondered what would have happened had he not taken the statin.
When Bob was diagnosed he was started on Aricept and he did very well on that and did very well for about 5 years. But as he progressed the neurologist added the Excelon patch. That made Bob noticeably more belligerent, my sweet Bob who hardly ever got angry in his life. So the doctor switched him to Namenda, which is the standard treatment in conjunction with the Aricept. But we didn't even get through a month of that, as it also made him more belligerent. So I asked the neurologist for an antidepressant, as I had asked some of my nurse practitioner friends what worked for them in their practice. The neurologist started him on an old drug with few side effects, Citalopram or Celexa. He warned me to watch for side effects as antidepressants sometimes cause the patient to have thoughts of suicide. Isn't that ironic? He started him on the lowest dose (the little old granny dose to quote him) and then later doubled it. That has done more than anything to keep things on an even keel. Now Bob is very happy, even if he doesn't know what he is happy about! But it has increased his penchant for talking to a non-stop level which folks do not know quite what to do with!
I will go into some of the things that we have tried to slow the process of the disease, but it marches on. First of all, Bob has always exercised like a fiend. We had an Schwinn stationary bike in the basement and he kept track of the miles he rode on it. He went around the world 1 and 1/2 times, but never got out of the basement. Then he switched to the Concept II rowing machine. He would record his result of each day on the computer and compete with others in his age bracket. One my one people he was competing against would drop out and he would wonder what happened to them. I would beg him to only exercise for an hour at a time and he would come up dripping wet with sweat, but he exercised 2 hours a day at top speed....We have a friend that recently started a KU (Kansas University) study (she is in the control group). She said they would probably be interested in talking to me about Bob, and I told her no, I wouldn't do that, as it would most certainly skew their study!
A dear friend sent me a book "Awakening from Alzheimer's" and I have been interested to note that we have tried a lot of the things that quote "Maverik doctors" recommend in this book, and have studies to prove their theories. But remember what I said at the beginning of this blog, that what helps one may not help another, or it may be more useful for prevention than it is to help once you have dementia. We have tried coconut oil, we drink green or rooibos tea every day, and have tried to go on a much lower cholesterol diet in recent years. This reminds me of another interesting fact. Studies done in recent years have linked the cholesterol plaques in the arteries of the heart to the plaques found in the brain of Alzheimer's patients--they are made up of the same material. We also tried Prevagen, the one they are touting on TV now that has the active ingredient apoaequorin, first discovered in jellyfish. I have a friend that says it has really helped her. I had read about curcumin, the active compound in the popular Indian spice turmeric, a main ingredient in many Indian dishes. Curcumin's anti-inflammatory powers are legendary, and so are its antioxidant properties. Some researchers attribute the relative rarity of Alzheimer's in India to the frequent us of turmeric in the typical Indian's diet. And right after I started Bob on it, totally unbeknownst to me, a friend had also started doing research on it for a company in Minnesota (not Mayo). So he has included Bob in his ongoing studies. Another interesting thing the neurologist we go to told me this week. He is at a research institute and they used a substance they had developed to inject patients last year, but all the testing afterward showed it had dissolved all the plaques in the brain, but it didn't help the symptoms of Alzheimer's in those patients. Maybe the damage had already been done to the brain? So next year they are going to try it in patients in an earlier stage of the disease.
Another thing the neurologist told me this week--Bob scored 12 on the MMSE test this week, down from 14 just three months ago. He basically said we are doing all we can. He had mentioned at one time he thought Bob had NPH (normal pressure hydrocephalus) and had recommended a brain shunt. But my experience with them in the hospital had not been good, and Bob has such a delicate balance as well because he has had hydrocephalus all his life and has compensated for it, so I didn't want to mess that up, with disastrous consequences. This plus my doing a lot of research on the computer, which some doctors frown on, by the way. But I believe you have to be informed to make the right decisions.
Until next time,
Betty
Let me start this blog about things we have tried by saying that after reading all the testimonials, that I have come to the conclusion that what helps one person may not help another. Or it is in a different stage of the disease that it helps, or may be more of a preventative measure than something that helps after the disease has developed.
Bob is very sensitive to medications. First of all, he has never taken any. So when the the primary care doctor we were going to at the time (the year 2000) recommended that he take a statin just as a prophylactic measure I was quite hesitant. His cholesterol and trigylceride levels were all normal. But we started it. It was a year later I started to notice the changes in his memory so I immediately stopped it. There were studies out at the time that statins were shown to cause memory loss. (I have taken statins for years for what I think is a hereditary elevated cholesterol and have had no side effects at all). And here I digress to get on my soapbox. These were the good ole days for the drug reps. They were the people dressed immaculately that you saw coming in and out of doctor's offices while you waited impatiently for your appointment. The more the doctor ordered patients the product the more perks they got--free golfing, free trips etc. I won't say I didn't enjoy those perks as well--lavish foods at the nursing stations, and free samples of medications that saved me a ton of money since I didn't have to buy them. So doctors were freely ordering medications they probably shouldn't have. That has thankfully changed with new regulations in place. I can't say that is what caused his problems, but have often wondered what would have happened had he not taken the statin.
When Bob was diagnosed he was started on Aricept and he did very well on that and did very well for about 5 years. But as he progressed the neurologist added the Excelon patch. That made Bob noticeably more belligerent, my sweet Bob who hardly ever got angry in his life. So the doctor switched him to Namenda, which is the standard treatment in conjunction with the Aricept. But we didn't even get through a month of that, as it also made him more belligerent. So I asked the neurologist for an antidepressant, as I had asked some of my nurse practitioner friends what worked for them in their practice. The neurologist started him on an old drug with few side effects, Citalopram or Celexa. He warned me to watch for side effects as antidepressants sometimes cause the patient to have thoughts of suicide. Isn't that ironic? He started him on the lowest dose (the little old granny dose to quote him) and then later doubled it. That has done more than anything to keep things on an even keel. Now Bob is very happy, even if he doesn't know what he is happy about! But it has increased his penchant for talking to a non-stop level which folks do not know quite what to do with!
I will go into some of the things that we have tried to slow the process of the disease, but it marches on. First of all, Bob has always exercised like a fiend. We had an Schwinn stationary bike in the basement and he kept track of the miles he rode on it. He went around the world 1 and 1/2 times, but never got out of the basement. Then he switched to the Concept II rowing machine. He would record his result of each day on the computer and compete with others in his age bracket. One my one people he was competing against would drop out and he would wonder what happened to them. I would beg him to only exercise for an hour at a time and he would come up dripping wet with sweat, but he exercised 2 hours a day at top speed....We have a friend that recently started a KU (Kansas University) study (she is in the control group). She said they would probably be interested in talking to me about Bob, and I told her no, I wouldn't do that, as it would most certainly skew their study!
A dear friend sent me a book "Awakening from Alzheimer's" and I have been interested to note that we have tried a lot of the things that quote "Maverik doctors" recommend in this book, and have studies to prove their theories. But remember what I said at the beginning of this blog, that what helps one may not help another, or it may be more useful for prevention than it is to help once you have dementia. We have tried coconut oil, we drink green or rooibos tea every day, and have tried to go on a much lower cholesterol diet in recent years. This reminds me of another interesting fact. Studies done in recent years have linked the cholesterol plaques in the arteries of the heart to the plaques found in the brain of Alzheimer's patients--they are made up of the same material. We also tried Prevagen, the one they are touting on TV now that has the active ingredient apoaequorin, first discovered in jellyfish. I have a friend that says it has really helped her. I had read about curcumin, the active compound in the popular Indian spice turmeric, a main ingredient in many Indian dishes. Curcumin's anti-inflammatory powers are legendary, and so are its antioxidant properties. Some researchers attribute the relative rarity of Alzheimer's in India to the frequent us of turmeric in the typical Indian's diet. And right after I started Bob on it, totally unbeknownst to me, a friend had also started doing research on it for a company in Minnesota (not Mayo). So he has included Bob in his ongoing studies. Another interesting thing the neurologist we go to told me this week. He is at a research institute and they used a substance they had developed to inject patients last year, but all the testing afterward showed it had dissolved all the plaques in the brain, but it didn't help the symptoms of Alzheimer's in those patients. Maybe the damage had already been done to the brain? So next year they are going to try it in patients in an earlier stage of the disease.
Another thing the neurologist told me this week--Bob scored 12 on the MMSE test this week, down from 14 just three months ago. He basically said we are doing all we can. He had mentioned at one time he thought Bob had NPH (normal pressure hydrocephalus) and had recommended a brain shunt. But my experience with them in the hospital had not been good, and Bob has such a delicate balance as well because he has had hydrocephalus all his life and has compensated for it, so I didn't want to mess that up, with disastrous consequences. This plus my doing a lot of research on the computer, which some doctors frown on, by the way. But I believe you have to be informed to make the right decisions.
Until next time,
Betty
Sunday, October 4, 2015
This is the 4th post of this blog. If you missed some, on my computer it tells how many posts are on the blog, and then lists the posts, so you can access them. And sometimes when I click on it, all the posts pop up. I am going to start this post by listing the 7 stages of Alzheimer's and commenting on them. There is also a "mini-mental state exam" (MMSE) test that they give him every time we visit the neurologist. The perfect score on that is 30, and Bob started out at about 28 six years ago. The score is supposed to go down 2-4 points a year but it hasn't necessarily followed that pattern. He did very well for the first five years after the diagnosis. But this past year he has declined very rapidly and the test scores bear that out. It was 14 at the visit in May, down from 22 the year before. The doctor was so surprised by the significant drop that he ordered a CT scan, which was unchanged from the first one he ever did. He saw him a month later, and that day he scored 18, which really perplexed the doctor. I told the doctor, "I told you he had good days and bad days!"
Back to the 7 stages of Alzheimer's:
1. No impairment. The neurologist at this point called it MCI (also the call letters for the KC airport!) or Mild Cognitive Impairment. He said it could go on to Alzheimer's or might never progress.
2. Very mild decline. At this point I could see a progression.
3. Mild decline--difficulty in finding the right word in conversation, or difficulty in remembering people's names, which never happened before--either of them!
4. Moderate decline. In this stage they have poor short term memory (but NOT long term memory!)
They are supposed to have trouble with simple arithmetic, but it is so weird, Bob has never been good at math, and he couldn't answer the question on the MMSE test about what season it was, but could count backwards from 100 by 7s with hardly any trouble!
5. Moderately severe. There is significant confusion (he can't even tell you which sport team he is watching). There is difficulty dressing appropriately (he had on a polo shirt and a tie the other day) but they can stall bathe and toilet independently. I was having trouble getting him to shower about a year ago. I mentioned it to the Alzheimer's Association social worker, and she said Alzheimer's patients usually don't like to shower. Their brain already feels scrambled and the water hitting their head intensifies the feeling. So we switched to baths, and he is doing well with that. I think he is currently in this stage.
6. Severe decline. The person is unaware of their surroundings, wanders, and has loss of bowel and bladder control. He has not started wandering yet, but I just got bracelets for both of us--mine has "caregiver" on it and his has "Alzheimer's) with the emergency phone numbers. Since I can still leave him, the social worker pointed out that what if I have a car accident or something and died, no one would know that there was a dependent person at home.
7. Very severe. They are near death. They may lose their ability to swallow, and in my experience, they choke easily and can develop pneumonia if they aspirate. A lot of times the cause of death is listed on the death certificate as pneumonia, when it should have been Alzheimer's, which is probably why the number of patients recorded as dying of Alzheimer's is inaccurate.
I know I said I would talk about things we had tried to slow the progress in this blog, but it is already too long, so I will do that next time!
Back to the 7 stages of Alzheimer's:
1. No impairment. The neurologist at this point called it MCI (also the call letters for the KC airport!) or Mild Cognitive Impairment. He said it could go on to Alzheimer's or might never progress.
2. Very mild decline. At this point I could see a progression.
3. Mild decline--difficulty in finding the right word in conversation, or difficulty in remembering people's names, which never happened before--either of them!
4. Moderate decline. In this stage they have poor short term memory (but NOT long term memory!)
They are supposed to have trouble with simple arithmetic, but it is so weird, Bob has never been good at math, and he couldn't answer the question on the MMSE test about what season it was, but could count backwards from 100 by 7s with hardly any trouble!
5. Moderately severe. There is significant confusion (he can't even tell you which sport team he is watching). There is difficulty dressing appropriately (he had on a polo shirt and a tie the other day) but they can stall bathe and toilet independently. I was having trouble getting him to shower about a year ago. I mentioned it to the Alzheimer's Association social worker, and she said Alzheimer's patients usually don't like to shower. Their brain already feels scrambled and the water hitting their head intensifies the feeling. So we switched to baths, and he is doing well with that. I think he is currently in this stage.
6. Severe decline. The person is unaware of their surroundings, wanders, and has loss of bowel and bladder control. He has not started wandering yet, but I just got bracelets for both of us--mine has "caregiver" on it and his has "Alzheimer's) with the emergency phone numbers. Since I can still leave him, the social worker pointed out that what if I have a car accident or something and died, no one would know that there was a dependent person at home.
7. Very severe. They are near death. They may lose their ability to swallow, and in my experience, they choke easily and can develop pneumonia if they aspirate. A lot of times the cause of death is listed on the death certificate as pneumonia, when it should have been Alzheimer's, which is probably why the number of patients recorded as dying of Alzheimer's is inaccurate.
I know I said I would talk about things we had tried to slow the progress in this blog, but it is already too long, so I will do that next time!
Sunday, September 27, 2015
Bob's health has always been excellent. It is amazing, because he was born with cerebral palsy and didn't walk until he was five years old. But he rejected the braces and other devices to help him along. He wanted to play baseball so badly, but was always the last one chosen for the team. But he kept at it, sometimes spending all day playing. And that was the best physical therapy he could have had. His grandma who raised him said he would come home at the end of the day crying because his legs hurt so bad. But the exercise stretched the tendons, and by the time I met him when I was 16 and he was 18, you wouldn't have noticed anything but a slight limp. He has had MRIs and CT scans through the years which shows that the hydrocephalus in the brain has not changed and he has compensated for it. So I asked the neurologist if that had anything to do with the dementia, and he immediately said "no". He also injured his knee playing football in high school and that same knee has bothered him all his life. We met our junior year in high school when I moved from Idaho to Baltimore and started in the new school on my 16th birthday. But we didn't start noticing each other (he says differently, that he knew that first day he liked me) until our class trip our senior year camping in the Shenandoah National Park. Schools back then didn't go to England or France on their class trips, or at least ours didn't! We went on a hike and he was so intent on the hike that he didn't notice the girl behind him doing her best to keep up! Maybe he was trying to impress me! We started dating on graduation weekend, but then our paths separated and he went to college in Michigan, and I started nurses training in North Carolina. But we kept in touch by letters (when I could read his handwriting). We married in 1963, and moved to Hinsdale, a suburb of Chicago, where we both worked at the Hinsdale Hospital.
We always enjoyed hiking. When we moved back to Silver Spring, Maryland for 8 years where our children were born, we would take them to our beloved sentimental Shenandoah National Park and camp and hike, even though we would end up carrying them!
After we moved to Shawnee, KS, a suburb of Kansas City we looked for places to take the children to camp and hike. We fell in love with Colorado and made sure we went there every summer. We would be on a trail, and another trail would branch off from it and we would look at it longingly. We would say "When we retire we will come back and do that hike"! Laugh out loud! After the children finished college and left home we started traveling more and it usually involved hiking. One of the most memorable was on the Napali coast in Kauai, Hawaii when it had just rained and we came back covered in mud. Another was at Machu Pichu, Peru where we climbed the centuries old Inca Trail, still very much intact, up to the Sun Gate and looked down on the ruins, just tiny little structures below, but with snow capped mountains in the distance. Then we discovered Arizona, in the good ole USA! We have done so many hikes there. One was in Catalina State Park near Tucson, and we were on a trail trying to reach the Seven Pools before sunset. Bob either fell and twisted his knee or twisted his knee and then fell. Long story short, I had to run back to the ranger station (thankfully downhill) and they sent a helicopter for him. They radioed which hospital they were taking him to, and I frantically drove the rental car back across town to the hospital, which was very near the hotel where we were staying. They already had the surgery crew called by the time I got there, but Bob told them they had to wait till his doctor got there to approve it. They asked who his doctor was and about that time I walked in and he said "There she is"! I told the orthopedic surgeon I was sure he was good, but please just put a brace on it, give him some crutches and let us get back to Kansas to the hospital where we worked and to TJ, the surgeon that I knew and wanted. He ended up only needing physical therapy.
Bob only missed three days of work in his whole career and that was due to a kidney stone that wouldn't pass on its own, and he had to have surgery to remove it.
On my next post I will write about some of the things we have tried hoping against hope they would help.
We always enjoyed hiking. When we moved back to Silver Spring, Maryland for 8 years where our children were born, we would take them to our beloved sentimental Shenandoah National Park and camp and hike, even though we would end up carrying them!
After we moved to Shawnee, KS, a suburb of Kansas City we looked for places to take the children to camp and hike. We fell in love with Colorado and made sure we went there every summer. We would be on a trail, and another trail would branch off from it and we would look at it longingly. We would say "When we retire we will come back and do that hike"! Laugh out loud! After the children finished college and left home we started traveling more and it usually involved hiking. One of the most memorable was on the Napali coast in Kauai, Hawaii when it had just rained and we came back covered in mud. Another was at Machu Pichu, Peru where we climbed the centuries old Inca Trail, still very much intact, up to the Sun Gate and looked down on the ruins, just tiny little structures below, but with snow capped mountains in the distance. Then we discovered Arizona, in the good ole USA! We have done so many hikes there. One was in Catalina State Park near Tucson, and we were on a trail trying to reach the Seven Pools before sunset. Bob either fell and twisted his knee or twisted his knee and then fell. Long story short, I had to run back to the ranger station (thankfully downhill) and they sent a helicopter for him. They radioed which hospital they were taking him to, and I frantically drove the rental car back across town to the hospital, which was very near the hotel where we were staying. They already had the surgery crew called by the time I got there, but Bob told them they had to wait till his doctor got there to approve it. They asked who his doctor was and about that time I walked in and he said "There she is"! I told the orthopedic surgeon I was sure he was good, but please just put a brace on it, give him some crutches and let us get back to Kansas to the hospital where we worked and to TJ, the surgeon that I knew and wanted. He ended up only needing physical therapy.
Bob only missed three days of work in his whole career and that was due to a kidney stone that wouldn't pass on its own, and he had to have surgery to remove it.
On my next post I will write about some of the things we have tried hoping against hope they would help.
Friday, September 18, 2015
I finally decided to tell people about Bob's disease this week, and it has been an emotional week. I could not do it before as he was very sensitive about it, and has never acknowledged that he has it, even in the early stages. He is so good with covering it up, it is amazing. If you watched the Glen Campbell story you will know what I am talking about. When asked a question, he would just pass off the answer by saying, "Oh, I don't have to know that (and neither do you!) and I don't care about it. One time in the neurologist's office when they were trying to get him to tell them where he was, he was evading the answer so cleverly that we all got to laughing so hard we were crying! So when he was aware, I could not tell anyone. Bob has always been excellent at names, much better than I am. So when he didn't know people's names or introduced them wrong, I was really concerned. And even after he was diagnosed, he was on the computer sending and receiving emails, he was active on Facebook, and he loved calling people on the phone. He had a whole network of friends he kept up with. So recently I opened his Facebook for him, and there were many messages there that hadn't been answered. So when I put the message on my Facebook timeline, and also on his, I got an overwhelming response of love and support. Then many on his Facebook sent private messages saying they wondered why they were not hearing from Bob. It is surprising that so many people that responded had or has a relative or spouse with Alzheimer's. And several others were dealing with other diseases that put them in a caregiver's role.
When I first decided to get a few people know, as it was becoming obvious that there was a problem, I was very unsure how to do it. Bob had been a leader both in his hospital job and in the church a lot of hospital employees attended. They would be used to him being in that role and would look for him to function like that. Also, he was very good at seeking out the hospital employees that needed a little extra help or encouragement. So I went to the Alzheimer's Association for help. They suggested that I tell a few people that I trusted and tell them it was OK to tell people. A lot of our friends knew, but in confidence. But the first week we went to church after that, a member came running up to me and said "Bob says Roma is at the door handing out bulletins. Is that true?" I had to tell her he must have been mixed up as Roma moved away many years ago, and she wasn't there that week! So that worked somewhat, but there were still others that didn't know. Also, when he was talking to someone and got "off the track" I would slip them a little card, available at Alzheimer's Association offices that says "My companion has Alzheimer's disease. Please understand." Those have also been very helpful at restaurants, etc.
The grandchildren have known for several years now, since they were picking up that things weren't right. I read them a wonderful book by Maria Shriver titled "What's Happening to Grandpa?" After I finished I asked if they knew why I read that to them and they piped up "Because our Grandpa has Alzheimer's".
So now I can relax more, since people will understand. Until next time...Betty
When I first decided to get a few people know, as it was becoming obvious that there was a problem, I was very unsure how to do it. Bob had been a leader both in his hospital job and in the church a lot of hospital employees attended. They would be used to him being in that role and would look for him to function like that. Also, he was very good at seeking out the hospital employees that needed a little extra help or encouragement. So I went to the Alzheimer's Association for help. They suggested that I tell a few people that I trusted and tell them it was OK to tell people. A lot of our friends knew, but in confidence. But the first week we went to church after that, a member came running up to me and said "Bob says Roma is at the door handing out bulletins. Is that true?" I had to tell her he must have been mixed up as Roma moved away many years ago, and she wasn't there that week! So that worked somewhat, but there were still others that didn't know. Also, when he was talking to someone and got "off the track" I would slip them a little card, available at Alzheimer's Association offices that says "My companion has Alzheimer's disease. Please understand." Those have also been very helpful at restaurants, etc.
The grandchildren have known for several years now, since they were picking up that things weren't right. I read them a wonderful book by Maria Shriver titled "What's Happening to Grandpa?" After I finished I asked if they knew why I read that to them and they piped up "Because our Grandpa has Alzheimer's".
So now I can relax more, since people will understand. Until next time...Betty
Sunday, September 13, 2015
Journey through Alzheimer's
Bob and I have been on many journeys. We have traveled the world and have been to every continent except Antarctica, where I have no desire to go! But now we are on another journey, a journey we had no idea we were going to take. We made no reservations, and would have declined, had we been given the choice.
It began with a trip to Australia and New Zealand we were taking for our anniversary and Bob's birthday. We left 3 days after 9/11/2001, and weren't sure planes would even be flying by then, but
with luck they were. I noticed that Bob was having trouble remembering things the guide told us, like what time we were going to have dinner, but chalked it up to 16 hours of jet lag. Things were fine when we got home, but then the same thing happened 3 years later on a safari to Africa. Again I
chalked it up to jet lag and we were both having trouble hearing with our ears stopped up from so many plane rides, a lot of them in small bush planes.
I retired from nursing a year later in 2005 but Bob wanted to continue working. He had always worked in the daytime and I had always worked at night so we got along fine! But I started noticing more things now that we were together more. My father had Alzheimer's and things started happened that were eerily similar, that we hadn't picked up on right away with my father. I mentioned it to our
(former) primary care doctor and he just laughed and said "Oh, women don't ever think that men listen to them". I told him, that no, it was more than that, I had had Bob's hearing checked and the audiologist said everything was fine, he was just tuning out what he didn't want to hear. Then we met some friends we hadn't seen for years at a funeral and Bob talked to them like they were his boss some years back. The lady called the next day and asked if I knew that Bob didn't know who they were. I had just heard a little of their conversation but I had picked it up as well. I confronted Bob with that information and he said, yes, he remembered after he got home, and wondered why the wife didn't belong with that husband. I asked him to go see a neurologist, but he refused. He said there was nothing wrong with him, and he was usually covering things up very well.
Bob retired in 2006, at my urging. I didn't want his wonderful career to end by them having to ask him to leave. I had wondered if his long time secretary in the hospital administration had picked anything up, but was hesitant to ask her. He went to one last hospital function which I didn't attend, and on the way home he made a left turn right in front of an oncoming car, and totaled his car.
The people in the other car were injured.
I told him that was it. He was going to a neurologist. The neurologist (former) did minimal testing and told me he didn't think there was an elephant in the room and that lightening wouldn't strike twice (referring to my dad also having it). But he did say that one of the first signs of dementia is losing the ability to judge distances, such as making a left hand turn with not enough time to do it.
Nurses have a wonderful networking system. So I started asking my nurse friends about other neurologists in the area, and found the doctor that we have been with since 2009. I was more than
happy with his testing, and he is the most kind, compassionate man I know. He started Bob on Aricept which helped for a few years.
We are much further along in the journey now. I will end for this time, and continue on later before
we both become glassy eyed! It is a long road, but we live one day at a time.
It began with a trip to Australia and New Zealand we were taking for our anniversary and Bob's birthday. We left 3 days after 9/11/2001, and weren't sure planes would even be flying by then, but
with luck they were. I noticed that Bob was having trouble remembering things the guide told us, like what time we were going to have dinner, but chalked it up to 16 hours of jet lag. Things were fine when we got home, but then the same thing happened 3 years later on a safari to Africa. Again I
chalked it up to jet lag and we were both having trouble hearing with our ears stopped up from so many plane rides, a lot of them in small bush planes.
I retired from nursing a year later in 2005 but Bob wanted to continue working. He had always worked in the daytime and I had always worked at night so we got along fine! But I started noticing more things now that we were together more. My father had Alzheimer's and things started happened that were eerily similar, that we hadn't picked up on right away with my father. I mentioned it to our
(former) primary care doctor and he just laughed and said "Oh, women don't ever think that men listen to them". I told him, that no, it was more than that, I had had Bob's hearing checked and the audiologist said everything was fine, he was just tuning out what he didn't want to hear. Then we met some friends we hadn't seen for years at a funeral and Bob talked to them like they were his boss some years back. The lady called the next day and asked if I knew that Bob didn't know who they were. I had just heard a little of their conversation but I had picked it up as well. I confronted Bob with that information and he said, yes, he remembered after he got home, and wondered why the wife didn't belong with that husband. I asked him to go see a neurologist, but he refused. He said there was nothing wrong with him, and he was usually covering things up very well.
Bob retired in 2006, at my urging. I didn't want his wonderful career to end by them having to ask him to leave. I had wondered if his long time secretary in the hospital administration had picked anything up, but was hesitant to ask her. He went to one last hospital function which I didn't attend, and on the way home he made a left turn right in front of an oncoming car, and totaled his car.
The people in the other car were injured.
I told him that was it. He was going to a neurologist. The neurologist (former) did minimal testing and told me he didn't think there was an elephant in the room and that lightening wouldn't strike twice (referring to my dad also having it). But he did say that one of the first signs of dementia is losing the ability to judge distances, such as making a left hand turn with not enough time to do it.
Nurses have a wonderful networking system. So I started asking my nurse friends about other neurologists in the area, and found the doctor that we have been with since 2009. I was more than
happy with his testing, and he is the most kind, compassionate man I know. He started Bob on Aricept which helped for a few years.
We are much further along in the journey now. I will end for this time, and continue on later before
we both become glassy eyed! It is a long road, but we live one day at a time.
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