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
Wednesday, April 13, 2016
Friday, March 18, 2016
This blog will be about the different resources that are available and some things I have found helpful.
I have read several books lately and they each in their own way offer nuggets of inspiration. The #1 book I recommend is "Being Mortal" by Atol Gawande. He is a surgeon from India and addresses the "golden years" concerns from places to reside to the physical end of life issues, and gives case studies for each to keep it interesting. Every physician and medical student should be required to read this book.
The second book is "The 36-Hour Day" by Nancy L. Mace, MAand Peter V. Rabins, MD. It is "a family guide to caring for people who have Alzheimer's disease, related dementias, and memory loss."
The third book is "Come back early today" by Marie Marley. It is her story about how she cared for her significant other. They lived in Cincinnati, Ohio, but then after his death she moved to Leawood, Ks., and is a grant writer for the American Academy of Family Physicians. One statement she made in the book particularly struck me. It said "It is one thing to know they can't help it, but another to stand there and take it."
Another resource for me, and please don't laugh, is Facebook. It makes me feel connected to the world, when things in the world at home don't make sense. But when we watch the news, I think the whole world has gone crazy!
I also "like" the Alzheimer's Reading Room on Facebook and read their posts. One post recently said to "Start living your life the way you always did." I would like to revise that to "Keep living your life the way you always did." They say to merge the world he lives in with the world you live in and try to make concessions to each. Easier said than done, I might add.
The GPS that I got for him to keep in his pocket that has an app to my phone so I could track him if he would start to wander has been fairly successful. But I told him never to push the button that is the panic button, as I can see him pressing it and telling the responder he wanted to order a pizza. But he has pushed it a couple of times "just to see if it works", and a nice young man has always answered. Fortunately I have been there both times to talk to the man, or the conversation could have gone on for hours....I think now I have impressed on him not to touch it. He has also lost the medic alert bracelet, and I have looked for it for days, but finally ordered another one. He hides things to keep them safe. I tried to get in his world like the Alzheimer's Reading Room said, and ask, "Now if I were him, where would I have hidden it??" But that didn't work!
He hasn't started to wander at all yet, but the other evening wanted to come to my yoga class with me.
I told him no, I was just going to yoga. He said, "Well, I could sit in the audience." I am sure the yogis in the room would appreciate that! Especially if he started to whistle at them!
Last, but not least, is the support of family and friends. Last weekend a couple that we have known for years, and worked with at the hospital came to visit for the weekend. The husband also has Alzheimer's about the same stage as Bob. The wife was able to go to the support group with me, and really enjoyed it. The social worker that leads it looks like a young thing that shouldn't leave her mother, but she is very knowledgeable about the resources in this area and it is a great group. A very quiet little man that always comes and brings treats shared this time that he watches girly movies to keep his mind off "things" and he had everyone in stitches! Then he sweetly turned to the man next to him whose turn it was to speak and said, "Top that!" The laughter started again--very therapeutic, I will say! And that was one of his resources! Anyway, back to our friends visit. The husband never has talked much, but he was patient enough to sit and have Bob talk at him for hours. Thank you Len! And it gave the ladies time to talk, and share our stories!
And the greatest resource of all:
God has not promised skies always blue,
flower-strewn pathways all our lives through,
God has not promised sun without rain,
joy without sorrow, peace without pain.
But God has promised, strength for the day,
rest for the labor, light for the way,
Grace for the trials, help from above,
unfailing sympathy, undying love.
-Annie Johnson Flint
Whoever you are, whatever trials you face (they might be totally different from mine)
Hang in there, my friend.
Betty
I have read several books lately and they each in their own way offer nuggets of inspiration. The #1 book I recommend is "Being Mortal" by Atol Gawande. He is a surgeon from India and addresses the "golden years" concerns from places to reside to the physical end of life issues, and gives case studies for each to keep it interesting. Every physician and medical student should be required to read this book.
The second book is "The 36-Hour Day" by Nancy L. Mace, MAand Peter V. Rabins, MD. It is "a family guide to caring for people who have Alzheimer's disease, related dementias, and memory loss."
The third book is "Come back early today" by Marie Marley. It is her story about how she cared for her significant other. They lived in Cincinnati, Ohio, but then after his death she moved to Leawood, Ks., and is a grant writer for the American Academy of Family Physicians. One statement she made in the book particularly struck me. It said "It is one thing to know they can't help it, but another to stand there and take it."
Another resource for me, and please don't laugh, is Facebook. It makes me feel connected to the world, when things in the world at home don't make sense. But when we watch the news, I think the whole world has gone crazy!
I also "like" the Alzheimer's Reading Room on Facebook and read their posts. One post recently said to "Start living your life the way you always did." I would like to revise that to "Keep living your life the way you always did." They say to merge the world he lives in with the world you live in and try to make concessions to each. Easier said than done, I might add.
The GPS that I got for him to keep in his pocket that has an app to my phone so I could track him if he would start to wander has been fairly successful. But I told him never to push the button that is the panic button, as I can see him pressing it and telling the responder he wanted to order a pizza. But he has pushed it a couple of times "just to see if it works", and a nice young man has always answered. Fortunately I have been there both times to talk to the man, or the conversation could have gone on for hours....I think now I have impressed on him not to touch it. He has also lost the medic alert bracelet, and I have looked for it for days, but finally ordered another one. He hides things to keep them safe. I tried to get in his world like the Alzheimer's Reading Room said, and ask, "Now if I were him, where would I have hidden it??" But that didn't work!
He hasn't started to wander at all yet, but the other evening wanted to come to my yoga class with me.
I told him no, I was just going to yoga. He said, "Well, I could sit in the audience." I am sure the yogis in the room would appreciate that! Especially if he started to whistle at them!
Last, but not least, is the support of family and friends. Last weekend a couple that we have known for years, and worked with at the hospital came to visit for the weekend. The husband also has Alzheimer's about the same stage as Bob. The wife was able to go to the support group with me, and really enjoyed it. The social worker that leads it looks like a young thing that shouldn't leave her mother, but she is very knowledgeable about the resources in this area and it is a great group. A very quiet little man that always comes and brings treats shared this time that he watches girly movies to keep his mind off "things" and he had everyone in stitches! Then he sweetly turned to the man next to him whose turn it was to speak and said, "Top that!" The laughter started again--very therapeutic, I will say! And that was one of his resources! Anyway, back to our friends visit. The husband never has talked much, but he was patient enough to sit and have Bob talk at him for hours. Thank you Len! And it gave the ladies time to talk, and share our stories!
And the greatest resource of all:
God has not promised skies always blue,
flower-strewn pathways all our lives through,
God has not promised sun without rain,
joy without sorrow, peace without pain.
But God has promised, strength for the day,
rest for the labor, light for the way,
Grace for the trials, help from above,
unfailing sympathy, undying love.
-Annie Johnson Flint
Whoever you are, whatever trials you face (they might be totally different from mine)
Hang in there, my friend.
Betty
Monday, February 1, 2016
In my last post I talked about how I was getting concerned that Bob was getting separated from me when we traveled. I had to have constant vigilance, but it was when we had to go to separate restrooms that there was a problem. Then on the news I heard of an Alzheimer's patient that wandered out of her home one night and froze to death. I am still very blessed as Bob has never showed any signs that he will wander and I can leave him and go on errands or go to lunch with a friend and he never has left the house. But there is always a first time, so I decided to be proactive with his safety. I purchased a home alarm when he was first diagnosed, and a couple of nights recently he has stayed up all night, saying he had to go to work. So I just set the alarm as I do every night and went to bed and went to sleep, because if he would go out, it would set off the alarm. And he never disturbs anything in the house. The social worker at the Alzheimer's center also recommended we both get medic alert bracelets, as what if something happened to me when I was gone, such as a car accident? My bracelet says "caregiver" and the emergency numbers so emergency personnel would know someone that needed me was at home. And recently our daughter Valerie asked that I set up an "emergency response team" so that, God forbid, I had to be rushed to the hospital in an ambulance, that she could call one of the people on the list, and they would come and stay with Bob for the 5 or so hours until she could get here from St. Louis. And I went even further. I just purchased a GPS device, which is connected to an app on my phone, that if he were to leave the house, or gets lost when we travel, I could find him. He wears the bracelet with no problem, so I am hopeful he will be able to keep this in his pocket. I think he knows on some level that he is safe in the house, but when I leave he ALWAYS says to me "Be careful, I need you". So he also realizes that he needs me to care for him.
People ask what he does when I go out. I have no way of knowing unless I purchase a babysitter cam, but I think he either naps or watches TV! The house is always in order, and the papers that were maybe strewn on the desk or table are neatly straightened up! The Alzheimer's Association says not to use the TV as a "babysitter" but since he doesn't read anymore, it occupies his time, and he seems to enjoy it. I used to turn on CNN, as he loved that, but the news seemed to make him more agitated (doesn't it do that to everyone?!) and he would focus on Putin for hours after he heard his name. So I turn on the easy listening music channel now. He loves that, and loves the facts that are displayed with each song. Bob has always liked music, and seems to like it even more now, which I have read is common with Alzheimer's patients. It clicks with something deep in their brain, and maybe even revives memories associated with the songs.
I read this recently and I love it. Alzheimer's patients are deeply forgetful, and even though they have don't have memory, they still have feelings. I am going to close with something our pastor Douglas Elsey sent me. It is beautiful. Thank you so much, Pastor Elsey!
IF ALZHEIMER'S COULD SPEAK
Talk to me:
I can hear your words and they touch my soul
Smile at me:
My eyes can see you and feel your heart, even when I can't remember how to smile back
Hold my hand:
I can feel your energy when our hands connect and it makes me feel safe and less alone
Live your life:
Help me on my path, but don't press "pause" on your life. Be the vibrant person I know and love
Trust the process
I know this is hard and not what we planned but trust the process. We can't control it, but we can choose our focus. Remember the good times. Know that I am OK and that you are in my heart always.
I love you Bob,
Betty
People ask what he does when I go out. I have no way of knowing unless I purchase a babysitter cam, but I think he either naps or watches TV! The house is always in order, and the papers that were maybe strewn on the desk or table are neatly straightened up! The Alzheimer's Association says not to use the TV as a "babysitter" but since he doesn't read anymore, it occupies his time, and he seems to enjoy it. I used to turn on CNN, as he loved that, but the news seemed to make him more agitated (doesn't it do that to everyone?!) and he would focus on Putin for hours after he heard his name. So I turn on the easy listening music channel now. He loves that, and loves the facts that are displayed with each song. Bob has always liked music, and seems to like it even more now, which I have read is common with Alzheimer's patients. It clicks with something deep in their brain, and maybe even revives memories associated with the songs.
I read this recently and I love it. Alzheimer's patients are deeply forgetful, and even though they have don't have memory, they still have feelings. I am going to close with something our pastor Douglas Elsey sent me. It is beautiful. Thank you so much, Pastor Elsey!
IF ALZHEIMER'S COULD SPEAK
Talk to me:
I can hear your words and they touch my soul
Smile at me:
My eyes can see you and feel your heart, even when I can't remember how to smile back
Hold my hand:
I can feel your energy when our hands connect and it makes me feel safe and less alone
Live your life:
Help me on my path, but don't press "pause" on your life. Be the vibrant person I know and love
Trust the process
I know this is hard and not what we planned but trust the process. We can't control it, but we can choose our focus. Remember the good times. Know that I am OK and that you are in my heart always.
I love you Bob,
Betty
Sunday, January 17, 2016
We have just come back from a 3 week trip to visit the grandkids in Chattanooga, TN and St. Louis, Mo. (We used to go to Calcutta, now we go to Chattanooga!) It is getting a little more challenging to travel, as when we stop for gas and a restroom, or in a museum, And if Bob finishes first, he takes off...I wish there were more family style restrooms. But on the way home I tried going in with him, and then taking him back out to sit in the car while I went to the restroom, and he will stay in the car.
And in one museum, I asked the lady at the desk to let him talk to her (not her talk to him) while I looked around and she graciously agreed and he talked her ear off. He loves to talk, and while at our daughter's home in St. Louis, Bob whispered confidentially to our son-in-law that the "big shots" didn't wear underwear. He said they autographed the underwear and sold it for a big profit...
In this blog, I am going to talk about the changes he is undergoing. The best video I have ever watched about Alzheimer's explains that as the plaque builds up in different areas of the brain, the symptoms consistent to that area's function are affected. Now, let me make one thing clear! I am NOT a psychiatric nurse, but I have great admiration for my friends who are. Our "psych" rotation was at a 3000 bed state hospital in Maryland and it was enough to almost make me quit nursing. Bob and I were dating seriously and I called him one evening and told him I was quitting nursing as "I didn't know they did stuff like that to people". But he was able to talk me out of it--more about that later. Most of Bob's changes now have to do with sensory perceptions. And it is weird--the symptoms go in cycles, disappear, and then reappear. His sense of touch is greater and he will rub a piece of fabric for example and exclaim over how good it feels, but then feel like bugs are crawling all over him. His sense of taste and smell is different and foods he used to love, he will take one sniff, and decide not to eat it. He also exhibits the different classifications of psychiatry, which is logical as it is the same brain we are talking about. There is OCD--obsessive compulsive disorder. Every spot of water on every sink has to be removed which translates into rolls of paper towels. There is paranoia--he wears his jacket continually in the house as it contains at least 10 writing pens, and if he doesn't wear it "the other people in the house will steal all my pens." (There are no other people living in the house). And he hides things so neither of us can find them! There is schizophrenia--the gentle Bob who NEVER raised his voice at me can have an angry outburst one minute, and then like flipping a switch, he is meek and compliant again. I once saw a patient in ICU (suicide attempt) whose heart rate on the monitor would change dramatically as she went in and out of her multiple personalities. Depression--I can't say I see what I would call depression, but at the suggestion of my mental health nurse friends, I asked the doctor to order an antidepressant, and that has seemed to help more than any other thing. And the antidepressant that I take has also helped immensely, and I am very thankful that after much debate on my part, I started taking it.
Now back to the state mental hospital in Maryland, which ironically was in a town called Sykesville!
I was assigned to the acute care ward, where the burly techs chase the patient, tie them down, and with no sedation, the electric current was applied as the patients screamed for all they were worth. It is called ECT--electro convulsive therapy--as they go into severe convulsions where you think they will break their back. I almost vomited and fainted the first time I saw it, and had to leave the room. BUT it is coming back into vogue, and my nurse friends tell me it helps depression more than anything else. So, before I retired, I learned they were using it at the hospital where I worked. They did it at 0500 in the post anesthesia care unit before the surgery day started, and an anesthesiologist was present to provide sedation. He would provide sedation, then paralyze the patient so not even a finger wiggled, and then the shock was applied, the paralysis was reversed with another medication and the patients woke right up with no side effects (except loss of long term memory). I was standing there watching, and all the nurse's favorite psychiatrist, Dr. Pol, came up to me and put his arm around me and said "It isn't like it used to be, is it Betty?" He was also a mindreader!
I tell this story because several people have sent me a link. It is about on-going trials in Australia where electrical impulses are being applied in small doses to brains of Alzheimer's patients to dissolve the plaque. It has gone through mice, now they are testing sheep, and it will be ready for human trials in 2017. It is helping more than any medication that has been tried. I am a little reticent to get excited however, even if it seems very logical. Bob's neurologist told us in November that we were basically out of options; that Bob was too far along. He said their research had developed a medication that with post administration testing last year, they found it had dissolved the plaque in their patients, but the symptoms didn't disappear (maybe the brain was already too damaged?) So this year they are trying it on patients just developing the symptoms to see if it helps with earlier administration.
Another thing that has helped is a product from Natural Balance called Happy Sleeper. It is a mixture of 3 mg. of Melatonin and Valerian root, which potentiates the Melatonin. It is available at health food stores or I get it from Amazon, which is cheaper. He takes 2 capsules nightly. He has never been a good sleeper, but this really seems to help. And when we cuddle up in bed at night, troubles of the day seem to fade away....
Happy New Year!
Betty
And in one museum, I asked the lady at the desk to let him talk to her (not her talk to him) while I looked around and she graciously agreed and he talked her ear off. He loves to talk, and while at our daughter's home in St. Louis, Bob whispered confidentially to our son-in-law that the "big shots" didn't wear underwear. He said they autographed the underwear and sold it for a big profit...
In this blog, I am going to talk about the changes he is undergoing. The best video I have ever watched about Alzheimer's explains that as the plaque builds up in different areas of the brain, the symptoms consistent to that area's function are affected. Now, let me make one thing clear! I am NOT a psychiatric nurse, but I have great admiration for my friends who are. Our "psych" rotation was at a 3000 bed state hospital in Maryland and it was enough to almost make me quit nursing. Bob and I were dating seriously and I called him one evening and told him I was quitting nursing as "I didn't know they did stuff like that to people". But he was able to talk me out of it--more about that later. Most of Bob's changes now have to do with sensory perceptions. And it is weird--the symptoms go in cycles, disappear, and then reappear. His sense of touch is greater and he will rub a piece of fabric for example and exclaim over how good it feels, but then feel like bugs are crawling all over him. His sense of taste and smell is different and foods he used to love, he will take one sniff, and decide not to eat it. He also exhibits the different classifications of psychiatry, which is logical as it is the same brain we are talking about. There is OCD--obsessive compulsive disorder. Every spot of water on every sink has to be removed which translates into rolls of paper towels. There is paranoia--he wears his jacket continually in the house as it contains at least 10 writing pens, and if he doesn't wear it "the other people in the house will steal all my pens." (There are no other people living in the house). And he hides things so neither of us can find them! There is schizophrenia--the gentle Bob who NEVER raised his voice at me can have an angry outburst one minute, and then like flipping a switch, he is meek and compliant again. I once saw a patient in ICU (suicide attempt) whose heart rate on the monitor would change dramatically as she went in and out of her multiple personalities. Depression--I can't say I see what I would call depression, but at the suggestion of my mental health nurse friends, I asked the doctor to order an antidepressant, and that has seemed to help more than any other thing. And the antidepressant that I take has also helped immensely, and I am very thankful that after much debate on my part, I started taking it.
Now back to the state mental hospital in Maryland, which ironically was in a town called Sykesville!
I was assigned to the acute care ward, where the burly techs chase the patient, tie them down, and with no sedation, the electric current was applied as the patients screamed for all they were worth. It is called ECT--electro convulsive therapy--as they go into severe convulsions where you think they will break their back. I almost vomited and fainted the first time I saw it, and had to leave the room. BUT it is coming back into vogue, and my nurse friends tell me it helps depression more than anything else. So, before I retired, I learned they were using it at the hospital where I worked. They did it at 0500 in the post anesthesia care unit before the surgery day started, and an anesthesiologist was present to provide sedation. He would provide sedation, then paralyze the patient so not even a finger wiggled, and then the shock was applied, the paralysis was reversed with another medication and the patients woke right up with no side effects (except loss of long term memory). I was standing there watching, and all the nurse's favorite psychiatrist, Dr. Pol, came up to me and put his arm around me and said "It isn't like it used to be, is it Betty?" He was also a mindreader!
I tell this story because several people have sent me a link. It is about on-going trials in Australia where electrical impulses are being applied in small doses to brains of Alzheimer's patients to dissolve the plaque. It has gone through mice, now they are testing sheep, and it will be ready for human trials in 2017. It is helping more than any medication that has been tried. I am a little reticent to get excited however, even if it seems very logical. Bob's neurologist told us in November that we were basically out of options; that Bob was too far along. He said their research had developed a medication that with post administration testing last year, they found it had dissolved the plaque in their patients, but the symptoms didn't disappear (maybe the brain was already too damaged?) So this year they are trying it on patients just developing the symptoms to see if it helps with earlier administration.
Another thing that has helped is a product from Natural Balance called Happy Sleeper. It is a mixture of 3 mg. of Melatonin and Valerian root, which potentiates the Melatonin. It is available at health food stores or I get it from Amazon, which is cheaper. He takes 2 capsules nightly. He has never been a good sleeper, but this really seems to help. And when we cuddle up in bed at night, troubles of the day seem to fade away....
Happy New Year!
Betty
Saturday, December 12, 2015
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!
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, 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
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