June 21.2019 It was the first day that my brother and his wife were here from Germany. I woke my husband around 8 am so that we could all begin the day together. I helped him sit up and told him to sit on the edge of bed for a minute. The next thing I heard was a crash and my husband was on the floor unable to move. I called the fire department to take him to the hospital, he had broken his hip. Two days later they operated and put two Titanium rods in his hip. Three days later he was in the nursing home for rehabilitation.
61 days later he was dismissed because we were told that he had reached a plateau.
I asked the he be sent home so that I could take care of him, it was the worst three days of my life. The first night he bellowed Kaaaaaariiiiin, Heeeelp, Kaaaaariiiin, Heeelp, all night long. I had bought a hospital bed for him and the second night he rattled the sidebars all night long, same thing the third night.
On the fourth day I had to drive him to the doctor for her to grant us home health so he could have physical therapy. The doctor did not speak to my husband, she spoke at him. "Look at him, he is 98 he can die any minute, he had a broken hip, prostate cancer etc. He belongs in hospice, look at him he's 98." I finally told her I treated our dog better, she interpreted that I was not ready to deal with reality and consented to send im to ER. I noticed that during her barrage of humiliating words, he shrunk in his wheelchair.
A friend and I took him to ER and we were told they'd keep him because he had a UTI. They kept him for a week on three different antibiotics interveniously On August 30. our 39th wedding anniversary they wanted to send him home. I had contacted a memory
care center to see if they could take him, yes on Wednesday or Thursday, it was th day before Labor day and they wanted their patients gone. The memory care center took him in and readied a room. They had a bed for him and the next day we brought his hospital bed from home. My daughter installed it and bought him a chair and a tv.
Our 39th Anniversary was a sad day and I felt broken. I went home and sat down, looked around me and thought, I'll never cook for him, never yell for him to turn his TV down, life is over and I am paralyzed and afraid.
Saturday, November 30, 2019
Sunday, November 4, 2018
DEMENTIA - today I am angry or should I say pissed?
Our youngest daughter was here recently and when my husband had a appointment with a new Neurologist I asked her to come along because I knew she'd ask questions I would never think of. The new Neurologist in town is young, thorough and wonderful. After several tests no one did before she asked us in her office to show us the MRI of his brain that his original doctor ordered and I supplied. She showed us that he had several strokes, not just the two we were told about which landed him in the hospital, the nursing home for rehab, home with home health and then outpatient physical therapy.
His original doctor had diagnosed him with vascular dementia, he said at the time that he didn't like the word Alzheimers. Stupid me I never thought anything of it and didn't question him. He said that the arteries in his head were being blocked hence the vascular dementia.
The new doctor said that his arteries are only 97% blocked which isn't bad for a 97 year old man. She said his diagnosis is Dementia/Alzheimers.
I am angry that the doctors were not HONEST with me, did they think I couldn't take it? I am a child of WWII, spent the first three years of my life in a air raid shelter, we lost our home, went to a small village in the Swabian Albs and lived off the land and the doctor thought I couldn't take it. In my life I've been through hell, I've lived through it, gotten stronger and I am proud of who I have become.
On her last day here my youngest daughter cried her heart out, when I asked her why? She said "you have it so hard." Yes it is, but it isn't as hard as it would be without my husband, so whatever comes my way I'll live through it.
His original doctor had diagnosed him with vascular dementia, he said at the time that he didn't like the word Alzheimers. Stupid me I never thought anything of it and didn't question him. He said that the arteries in his head were being blocked hence the vascular dementia.
The new doctor said that his arteries are only 97% blocked which isn't bad for a 97 year old man. She said his diagnosis is Dementia/Alzheimers.
I am angry that the doctors were not HONEST with me, did they think I couldn't take it? I am a child of WWII, spent the first three years of my life in a air raid shelter, we lost our home, went to a small village in the Swabian Albs and lived off the land and the doctor thought I couldn't take it. In my life I've been through hell, I've lived through it, gotten stronger and I am proud of who I have become.
On her last day here my youngest daughter cried her heart out, when I asked her why? She said "you have it so hard." Yes it is, but it isn't as hard as it would be without my husband, so whatever comes my way I'll live through it.
Sunday, October 14, 2018
Dementia, this that and anything else.
Time flies wether you want it to or not, so today is Sunday October 14.2018, I want to hold on to today, why? How the hell should I know? It rained last night, we needed it and today there are clouds in the sky and I hope that more rain is in the forecast. Living in the desert I miss rain, it has been a while since we had any and the earth soaks it up and the desert will bloom beautifully in spring, all yellow colors, the Brittlebush, the Palo Verde tree and many other plants. There is nothing on the agenda except washing bedding and making my husband breakfast, lunch and dinner today. I consider this a peaceful day, no drama, no confusion except why doesn't this football addict watch football? Instead he is bent over a book of crossword puzzles, he can no longer do them but copies from the back and that is fine, it means he is doing something and can still write.
I see improvement, not in his dementia but in his physical being. I still take him to exercise three times a week and the other day we walked along the lake, we walked about one half mile with sitting on a bench here and there. Now that it's not so hot outside, well walk more often. At exercise they admire this 97 year old man, he is an example to others who are not as fit, it's sad that his memory is not good, but as in everything there are good days and not such good days. I figured out a long time ago that you have to deal with what life hands you and so I've come to a certain kind of peace.
I have conversations with him and don't get answers often, sometimes I notice that he fudges them, gives a generic answer that could cover anything, I think it's fine, at least it keeps the wheels turning. Poker will start again soon and I asked his friends to let me know if he can still play, he's needed a little help in the past and they give it gladly, but the day will come when that will no longer help, it will be okay, because he'll forget that he once played.
It's a dreadful and sad disease for him and his family, he never talks about it, does not express fear or anything else, always accepts what it given, never argues or gives an opinion, that makes me sadder than anything.
I see improvement, not in his dementia but in his physical being. I still take him to exercise three times a week and the other day we walked along the lake, we walked about one half mile with sitting on a bench here and there. Now that it's not so hot outside, well walk more often. At exercise they admire this 97 year old man, he is an example to others who are not as fit, it's sad that his memory is not good, but as in everything there are good days and not such good days. I figured out a long time ago that you have to deal with what life hands you and so I've come to a certain kind of peace.
I have conversations with him and don't get answers often, sometimes I notice that he fudges them, gives a generic answer that could cover anything, I think it's fine, at least it keeps the wheels turning. Poker will start again soon and I asked his friends to let me know if he can still play, he's needed a little help in the past and they give it gladly, but the day will come when that will no longer help, it will be okay, because he'll forget that he once played.
It's a dreadful and sad disease for him and his family, he never talks about it, does not express fear or anything else, always accepts what it given, never argues or gives an opinion, that makes me sadder than anything.
Saturday, April 14, 2018
MY LIFE WITH DEMENTIA
I"ve written about Dementia before so this is an update, nothing much has changed, I am still the only caregiver of my husband, but now I take a mild drug for anxiety. I hate having to take something, but if I am to take care of my husband with love and compassion rather resentment that my old life is gone, my doctor and I decided it is best.
My husband is still the healthiest 96 1/2 year old you'll ever meet, I take him to ProWellness with is part of ProTherapy, if you have attended the latter, you pay less than if you had never been to therapy there. There is a trainer who works with him on various parts of his body. If I tell the trainer that my husband had trouble getting onto the sidewalk, he will work on that problem. Outside of exercise three or four times a week, I have him walk around the pool at least once a day, hot weather permitting.
Lately his appetite has reduced significantly, it could be the dementia or it could be that he gained a lot of weight and he is trying to slim down. He is taking the drug "Namenda" for his dementia, in addition to that several vitamins like B12, VirtVite which it the generic for Foltex, a multi vitamin, coconut capsule, all recommended by the neurologist who left town, now all we have is a neurologist that comes from Las Vegas every Friday, but mostly he sees the physician assistant or nurse practitioner. It is not a satisfactory arrangement, but it is all we have. There is NO CURE for dementia, the Namenda is supposed to slow it down and from dementia group I understand that it is only supposed to last two years, I can't tell. He was diagnosed with "vascular dementia", the arteries in his head are hardening, he has had two small strokes, before that several TIA's.
A friend and I recently attended a two day workshop held by the Dementia Connection of Lake Havasu City. The speaker or I think of her as the teacher was TEEPA SNOW. It was a refresher for me but there was a lot of new information. You can see/hear Teepa Snow on YouTube, she is simply fabulous. I had a private conversation with her and her advice to me was "do something fun for you." I haven't done that yet and don't know if I'll get around to it. My husband gets confused around strangers so I make sure that he is only surrounded by people he knows.
His old friend from the Golden K Kiwanis days pick him up for poker every Wednesday and it is surprising how often he wins. He is still good with numbers which is surprising. I am thankful to them for their kindness.
Life is not easy, but we muddle through it and I am grateful every day that he is still with me.
I hope some people will ready this, I'd appreciate a note to let me know this helped or enlightened you. I will be glad to answer any questions. Thank You for reading this.
Thursday, January 26, 2017
Dementia cotinues
That man you see there is the same he always was with the exception of memory loss, that has deteriorated somewhat as has comprehension. I lay out his clothes, tell him to brush his teeth, change this or that. The most important thing is that he is happy, if his situation worries him or if he comprehends fully what is going on he doesn't share that. He has always been a private man, a happy man who lived by the saying "he who anger you conquers you," and trust me I have tried to anger him in 36 1/2 years of marriage. I am his full time caregiver, no family member has called to ask "how are you doing mom, how are you handling it all?" No one has offered to come for a few days to give me a break from care taking. Am I angry? On days when I am on the ground with fatigue I damn them all. When I have some rest I tell myself to enjoy the days we have together, to laugh, to be sad and all in all we just take it one day at a time. I have never paid bills and now I have to and I absolutely hate it, I see money going out by the truck load and coming in seems never enough, but I handle it and do the best I can. I attend support group twice a month and if it were not for that I don't know what I would do, there at least we share our burden, laugh some time and others not. I am thankful for the support group and in general I am thankful that I still have my husband who will be 96 in June with me and hope to have him for years to come.
Tuesday, March 15, 2016
Dementia, the disease that steals your mind
March 15. 2016
You learn something new every day, for instance I learned that there are around 88 different types of dementia (Alzheimers), my husband was diagnosed about two years ago with vascular dementia, the arteries in his head are narrowing or do we call that calcifying? It is no surprise that something like hit him at the age of about 93, he will be 95 this summer.
It came on slowly and I didn't "get it", I would tell him something and he'd say "I don't understand what you mean." I would get impatient and say "everyone else gets what I am saying." English is my second language, I began learning it at the age of eleven when I went to high school in Germany, but I kept wondering if I express myself correctly. Time went on and I suggested new hearing aids, he came home telling me that they told him he had trouble with comprehension. I mentioned that perhaps we should see a Neurologist and he agreed. He got a simple test and failed and we were told that he has dementia. He was prescribed medication with instructions to come back in three months. He did better on the memory test but I asked the doctor how can we be sure it is not something else like a tumor on the brain? I told him I wanted an MRI, well at his ripe old age and the new Obama are and Medicare cutting costs wherever so that our politicians can get bigger raises, the doctor told me he would have to manipulate things, I told him to go ahead and manipulate I wanted that MRI. It came back narrowing of the arteries in the brain.
Almost two years have past and things have gotten worse, his short term memory is literally gone,he still takes care of his physical needs, showers, dresses is continent and takes the dog to the dog park daily. He plays poker once a week with old friends and last winter he was on his way at 6:45 pm, the place is about a mile and a half from home. He called me and told me he didn't know where he was and I told him to find an intersection and call me. I went out thinking I could find him and realized no wonder he got lost, we have no street lights and landmarks disappear in the night. He called me to tell me he was home. After that his friends pick him up and bring him homes. During the day he would drive himself to the doctor and after a while that faded from his mind as well, so now I drive him wherever he needs to go.
Yesterday I took him to the doctor and afterwards I was going to take him to see his 92 year old friend in the nursing home where she was for rehab, time ran out and I promised to take him today.
I have pneumonia and basically have been sick since just before the new year and needed soberest. I heard the bell that signals that someone has left home and I figured he'd take the dog to the backyard. I got up and no husband, he had decided to go visit his friend. He came home hours later and said "I didn't find it," and I mentioned I'd have to take the car keys away soon. It will be one of the saddest day of my life. Today I drove him to see her but she had been discharged.
A friend and I go to support group three times a month, it's good to hear that I am not alone, I feel my case is worse because all of our 35 years my husband has handled all financials, insurance, house etc. and all of a sudden it is on my shoulders and I know nothing and he remembers nothing. What is hardest is the fact that all of a sudden you are alone, friends don't call and say "let's go out to lunch," and you feel isolated. Right now I'm sick and I feel like I've been locked in the house forever and I worry that without social stimulation I will fall into dementia before I know it, but I am sure that I am not the only one with that fear.
This is a pot I made some years ago called "Hands across the world." It is in the home of a friend. I sold my pottery something that I regret but felt I had to do, I am not sure it didn't help me stay sane.
You learn something new every day, for instance I learned that there are around 88 different types of dementia (Alzheimers), my husband was diagnosed about two years ago with vascular dementia, the arteries in his head are narrowing or do we call that calcifying? It is no surprise that something like hit him at the age of about 93, he will be 95 this summer.
It came on slowly and I didn't "get it", I would tell him something and he'd say "I don't understand what you mean." I would get impatient and say "everyone else gets what I am saying." English is my second language, I began learning it at the age of eleven when I went to high school in Germany, but I kept wondering if I express myself correctly. Time went on and I suggested new hearing aids, he came home telling me that they told him he had trouble with comprehension. I mentioned that perhaps we should see a Neurologist and he agreed. He got a simple test and failed and we were told that he has dementia. He was prescribed medication with instructions to come back in three months. He did better on the memory test but I asked the doctor how can we be sure it is not something else like a tumor on the brain? I told him I wanted an MRI, well at his ripe old age and the new Obama are and Medicare cutting costs wherever so that our politicians can get bigger raises, the doctor told me he would have to manipulate things, I told him to go ahead and manipulate I wanted that MRI. It came back narrowing of the arteries in the brain.
Almost two years have past and things have gotten worse, his short term memory is literally gone,he still takes care of his physical needs, showers, dresses is continent and takes the dog to the dog park daily. He plays poker once a week with old friends and last winter he was on his way at 6:45 pm, the place is about a mile and a half from home. He called me and told me he didn't know where he was and I told him to find an intersection and call me. I went out thinking I could find him and realized no wonder he got lost, we have no street lights and landmarks disappear in the night. He called me to tell me he was home. After that his friends pick him up and bring him homes. During the day he would drive himself to the doctor and after a while that faded from his mind as well, so now I drive him wherever he needs to go.
Yesterday I took him to the doctor and afterwards I was going to take him to see his 92 year old friend in the nursing home where she was for rehab, time ran out and I promised to take him today.
I have pneumonia and basically have been sick since just before the new year and needed soberest. I heard the bell that signals that someone has left home and I figured he'd take the dog to the backyard. I got up and no husband, he had decided to go visit his friend. He came home hours later and said "I didn't find it," and I mentioned I'd have to take the car keys away soon. It will be one of the saddest day of my life. Today I drove him to see her but she had been discharged.
A friend and I go to support group three times a month, it's good to hear that I am not alone, I feel my case is worse because all of our 35 years my husband has handled all financials, insurance, house etc. and all of a sudden it is on my shoulders and I know nothing and he remembers nothing. What is hardest is the fact that all of a sudden you are alone, friends don't call and say "let's go out to lunch," and you feel isolated. Right now I'm sick and I feel like I've been locked in the house forever and I worry that without social stimulation I will fall into dementia before I know it, but I am sure that I am not the only one with that fear.
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