all my friends keep telling me I will have to place my loved one in a nursing home. Not sure how to go about this not knowing general nursing home time for the average patient of alzheimers. Thanks and God Bless.
Sharirose, my husband had Lewy Body Dementia, which differs from Alzheimer's in significant ways. But the general wisdom for all kinds of dementia is that eventually the disease progresses beyond what can be managed at home. I belong to a caregiver support group of other people taking care of loved ones with LBD. Most of them eventually have had to place their parent or their spouse. Most, but not all.
I was able to keep my husband at home for the 9.5 years of his disease. He died in our bedroom, holding my hand, in November last year. I never promised him that I would never put him in a care center. None of knows the course of the disease and what we can handle. I did promise him that I would never abandon him. If the way to get him the best care was to have him go to a care center, I would spend a lot of time with him there, I would be his advocate and make sure he was getting what he needed. I would always love him and want him to have the best possible care. We talked about this several times in his more lucid moments. We were both glad he could stay at home, but that wasn't fully under our control. We were lucky. Yes, I was a good caregiver. Yes, he had outstanding doctors. But other people in the support group had those advantages, too, and the disease just got beyond them. They were unlucky.
I could not have kept him home even the first year without solving the vexing problem of his nighttime agitation. The solution was a drug. In fact, the solution for us for many dementia-related problems was a drug. My motto is "better living through chemistry." My husband was definitely not doped up. One drug he took was specifically to combat daytime sleepiness. His wonderful geriatrician and his expert neurologist both had as their goals the highest quality of life he could have. Drugs were part of managing that.
I also could not have kept him at home without help. I never had someone help 24/7, but he did go to an adult day health program a few days a week as long as he was able, and then we had a personal care attendant 32 hours a week. I worked from home so I was usually there in the house when the attendant was, but it was wonderful not to have the full burden of his care. She helped him with his baths and helped me take him on outings, such as to the children's museum. In the last few months I also had Hospice care.
Was this journey hard? Oh my yes! Would it also have been hard if he had needed to be in a care center? Certainly! I don't think there is any way that having a spouse with dementia can not be hard. For me the question was never about trying to make it less hard for me, but trying to ensure he got the best care possible. If he had needed a care center, that is still what I would have been trying for.
Yes, some people can keep their loved one at home through the entire course of dementia. But there is a large element of luck involved, and not something you can control.
Thank you Jeannie G. for the wonderful explanation. What you wrote certainly gives me some guidelines to think about. My husband is experiencing daytime sleepeness. Our primary physician told us no medication helps much which is disheartening, Perhaps he should see a geriatric physician. I hope this helps others too. G
I was able to keep my husband at home for the 9.5 years of his disease. He died in our bedroom, holding my hand, in November last year. I never promised him that I would never put him in a care center. None of knows the course of the disease and what we can handle. I did promise him that I would never abandon him. If the way to get him the best care was to have him go to a care center, I would spend a lot of time with him there, I would be his advocate and make sure he was getting what he needed. I would always love him and want him to have the best possible care. We talked about this several times in his more lucid moments. We were both glad he could stay at home, but that wasn't fully under our control. We were lucky. Yes, I was a good caregiver. Yes, he had outstanding doctors. But other people in the support group had those advantages, too, and the disease just got beyond them. They were unlucky.
I could not have kept him home even the first year without solving the vexing problem of his nighttime agitation. The solution was a drug. In fact, the solution for us for many dementia-related problems was a drug. My motto is "better living through chemistry." My husband was definitely not doped up. One drug he took was specifically to combat daytime sleepiness. His wonderful geriatrician and his expert neurologist both had as their goals the highest quality of life he could have. Drugs were part of managing that.
I also could not have kept him at home without help. I never had someone help 24/7, but he did go to an adult day health program a few days a week as long as he was able, and then we had a personal care attendant 32 hours a week. I worked from home so I was usually there in the house when the attendant was, but it was wonderful not to have the full burden of his care. She helped him with his baths and helped me take him on outings, such as to the children's museum. In the last few months I also had Hospice care.
Was this journey hard? Oh my yes! Would it also have been hard if he had needed to be in a care center? Certainly! I don't think there is any way that having a spouse with dementia can not be hard. For me the question was never about trying to make it less hard for me, but trying to ensure he got the best care possible. If he had needed a care center, that is still what I would have been trying for.
Yes, some people can keep their loved one at home through the entire course of dementia. But there is a large element of luck involved, and not something you can control.