Violets, The fact that he wants to go home is almost universal. Two things to remember. One is that you really cannot safely take care of him at home alone, so there is no option. The other is that you can be a better wife to him if you aren't totally exhausted by all of his care needs. You can visit him somewhat refreshed because you can have a life of your own, and you can get some rest. One more thing to remember, depending on his stage of dementia, is that he may actually want to return to a childhood home he remembers. We don't always know what they mean when they say "home." Please don't let guilt get to you. Remember that you have done your best for him and that you still are. He needs more care than you can give alone. Keep in touch with us. Other caregivers will really understand. Carol
carolmorgan, putting a spouse in a care center has got to be one of the most excruciating experiences of caregiving. I'm not surprised that you feel like you failed him. That is human nature -- we want so much to help and to "fix" our loved ones that it feels like if we just tried harder or just had the magic answer we should be able to do it. The truth is that sometimes the best we can do for them is to turn them over to a whole team of people in a good environment. That is the truth, but it sometimes is hard to believe, especially when they are doing well. On a good day, it is easy to second-guess whether you could/should have been able to make it work at home. You did what was best. Take credit for that, and be proud.
I am feeling such relief that people other than myself are now caring for my spouse. He is quite a bit older than me. After 30 years of marriage and the last eight having been a caregiver/patient type of relationship, I was so exhausted from all the care, working full time, making almost weekly doctor appointments, counting meds, and him being so agitated and aggressive with his dementia. He is forever negative and blames me for all his misfortune. I am so run down from the stress and the lack of appreciation.....it really was two people's health that had to be considered and I had given sooooo much time, effort, and love, that my bank was completed bankrupt. Something had to change......some days I feel so guilty.....I struggle with the decision, but people have to know that this disease hurts MANY lives, not just the patients'. I pray for everyone going through this......there aren't any perfect answers to these situations.
I am going through this now. I have an appointment at the nursing home tomorrow, and the Dr is coming to the house on Wednesday to speak to my husband. He had a Hemorrhagic stroke in april 2016, He has limited speech, is muscles are getting weaker, from a inherited degenerative disease, he has a feeding tube for both liquids and formula. He is also suffering vascular dementia. The dementia part doesn't seem that bad yet, but I know it will get worse with time. I have finally reached the point where I cant look after him anymore and my health is suffering. It has been the hardest decision that I have ever made, the pain and guilt is excruciating but it has to be done. Thank you for your posts... I am so glad I am not on my own.
The patient that is being suffering from this disease i can say you are suffering from a very hard time. I have seen many people who are suffering from this disease and they have become more aggressive than they were in the first and yes at a certain stage they they act like they really mean it but this is due to the dementia.... As far as i have known this disease has no cure yet... And dear don't guilt yourself if he wants to come home and you don't want to... He needs more care and proper attention which you can not provide him so that's why let him stay there for proper care and treatment.
I placed my husband in a lovely dedicated memory care facility Dec. 1st, '16. He has always been good natured so I am pleased that behavior continues now. However, I took care of h I'm for 11 years, until July 16th, '15. I was diagnosed with A-Fib June 21, '16. The cardiologist said, I must place Wayne in a memory care of I may not live to see Christmas last year. After 11 months, he appeared to be much better. I moved him out and rented a home and we moved in July 29th. Not a good idea! In the last 5 months, I have been in the ER 2X. Cardiologist said, this time I must place him in a facility because I now have a weak heart valve. So, I did this and the place is wonderful. I tried, but caring for him was too stressful for my heart. Finally, I can sleep as long as I wish and eat whenever I wish. I am depressed, I know. I just wear old sweats, socks, don't bathe, brush my teeth and sometimes, don't even comb my hair. I am thankful for having a sweet dog, who is wonderful, benign company. I tried reading and find I kept re-reading the same paragraph, so closed the book. I sleep well, but do as little as possible. Once a week I grocery shop, but it takes me until mid afternoon to get dressed and go. I am a professional artist who has painted around the world, but I just don't seem to have that creative fire in me right now. I sure wonder when I will straighten up. I don't have a circle of friends, never had time to join a club, nor really wanted to. My college friends are not nearby. I do email daily. That keeps my grey matter stimulated, at least. I don't have much interest in visiting him and feel some guilt about that. When I do visit, (he's 3 mi. from here) he's always pleased, but never upset, so I am fortunate. Thanks for the space to comment.
If your husband has a progressive dementia, vilolets515, he will not get well. "Progressive" means the disease gets worse over time. My husband has Lewy Body Dementia, and it is a very hard truth to accept that he will never get well. Much research is going on world-wide, and perhaps some day a true cure and even a prevention may be possible, but now all we can do is treat the symptoms, and work to make the dementia patient safe and comfortable and perhaps even happy.
In a safe, comfortable setting, and perhaps with the help of appropriate medications, your husband's quality of life may improve. That doesn't mean the disease is getting better ... but that the people around him are getting better at treating him. That is a good thing, and greatly to be desired and worked for.
I don't know whether he understood exactly who you are when he saw you in the NH, but he obviously knew you were a good person, and a person he was glad to see. You can continue to be that for him, and to be his advocate for the best possible care, no matter what the disease does to him.
My heart goes out to you. This is a terrible journey.
By the way, early in my husband's dementia, he constantly wanted to go home. He'd pack his bag and wait by the door. He'd ask if it was time to leave yet. He'd ask when the cab was coming. Over and over and over he'd tell me he wanted to go home. And he was home! He was in the house we'd lived in together for the past 14 years. He slept in his own bed, watched his familiar television set, etc. etc. So the fact that someone with dementia wants to go "home" may not mean exactly what you would mean if you said it.
It is so hard to let the person go, it isn't guilt with me just sadness, sometimes my husband doesn't know who I am, and then another day he does, that gets easier and I try to make a joke out of it. The trouble is other people think you should pick the pieces of your own life up and everything will be wonderful, but of course it isn't like that. The old adage a day at a time. I'm struggling, but so are others, you are grieving for your husband who has long since gone, that is the truth of it. Good luck to both of us and anyone else who is struggling.
I totally understand your feeling of sadness. I feel the same way. My husband had been having short term memory loss about 3 years ago. Nothing major at first. He started getting more confused, especially at night, hallucinating (dead body on the kitchen floor) He was losing some of his strength due to severe arthritis, he's 85. I also have arthritis and nerve issues in my back, neck and legs. He fell twice and I couldn't get him up. The first time I had to call the EMTs just to get him up. The second time, my son was home and lifted him. He seemed to be more confused so he went to the hospital. Everything checked out ok except they said that he has Alzheimers. He went from the hospital to a rehab facility and the to their long term care. He's so upset with me because he thinks that I don't want to take him home. He cried and begged me to let him come home. It breaks my heat. I'm only 63 and I should have been able to take care of him but because of my own health problems I can't safely do it. I do understand your sadness and loneliness. This wasn't the way we thought our lives would go.
thankyou for sharing your stories I cared for my husbsnd after a stroke to his brain in Nov 2016 After 5 months of caring at home I was so exhausted and stressed I had a mild tia followed by a suspected heart attack and my blood pressure was up by 40 percent On my Drs advice I had my husband placed in hostel care as he was becoming progressively less mobile and his emotional health had deteriorated He hated me for this and got himself discharged and a friend brought him home without any consultation with me or even a phone call from the care facility He then had 2 severe falls at home resulting in a bleed to his brain and many weeks in hospital and then another fall causing a broken hip and shoulder This led to pallative care and his death in August 2017 I have times if great remorse at having to put him in care and blame myself for his unhappiness in not being at home in my care So your posrs have helped me work thru my grief and guilt
my husband who is a lot older than myself had a stroke with a bleed which left him talking away but not making sense, I had him home for 12days and had to phone numerous time to his sons for help with situations that were out of control. I had to phone for ambulance early hours of the morning because he went out of control. A further month in hospital followed by a nursing home, it was the most painful decision ,I felt I had failed him. Now two months on he hopefully has settled and is showing signs of at peace, not so agitated. He has had moments at the nursing home which to be honest helped me, knowing that I had done the right thing. When we have really good days I feel should I have him home, but I have to remind myself of how things were b,y reading a few notes I had written down before he had the last stroke which nature has a way of blocking those memories out. I did do the right thing and my husband has a quality of life again at the age of 87 and I am allowed into it.
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The fact that he wants to go home is almost universal. Two things to remember. One is that you really cannot safely take care of him at home alone, so there is no option. The other is that you can be a better wife to him if you aren't totally exhausted by all of his care needs. You can visit him somewhat refreshed because you can have a life of your own, and you can get some rest.
One more thing to remember, depending on his stage of dementia, is that he may actually want to return to a childhood home he remembers. We don't always know what they mean when they say "home." Please don't let guilt get to you. Remember that you have done your best for him and that you still are. He needs more care than you can give alone. Keep in touch with us. Other caregivers will really understand.
Carol
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It has been the hardest decision that I have ever made, the pain and guilt is excruciating but it has to be done. Thank you for your posts... I am so glad I am not on my own.
I am a professional artist who has painted around the world, but I just don't seem to have that creative fire in me right now. I sure wonder when I will straighten up. I don't have a circle of friends, never had time to join a club, nor really wanted to. My college friends are not nearby. I do email daily. That keeps my grey matter stimulated, at least. I don't have much interest in visiting him and feel some guilt about that. When I do visit, (he's 3 mi. from here) he's always pleased, but never upset, so I am fortunate. Thanks for the space to comment.
In a safe, comfortable setting, and perhaps with the help of appropriate medications, your husband's quality of life may improve. That doesn't mean the disease is getting better ... but that the people around him are getting better at treating him. That is a good thing, and greatly to be desired and worked for.
I don't know whether he understood exactly who you are when he saw you in the NH, but he obviously knew you were a good person, and a person he was glad to see. You can continue to be that for him, and to be his advocate for the best possible care, no matter what the disease does to him.
My heart goes out to you. This is a terrible journey.
By the way, early in my husband's dementia, he constantly wanted to go home. He'd pack his bag and wait by the door. He'd ask if it was time to leave yet. He'd ask when the cab was coming. Over and over and over he'd tell me he wanted to go home. And he was home! He was in the house we'd lived in together for the past 14 years. He slept in his own bed, watched his familiar television set, etc. etc. So the fact that someone with dementia wants to go "home" may not mean exactly what you would mean if you said it.
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