He is only 68, but I also have a disabled son. Our son is 13 and has cerebral palsy and autism and needs much care and assistance with all daily living skills also. It tears me apart, I can't imagine my husband not here with us and thought he would be okay for a long time. He is only 68 and his symptoms started about 6 or 7 years ago. He is on Mememtine and the Exelon patch but it still is not enough to help his memory. He is also taking Neurontin for neuropathy in his feet. In the last few months, he has been progressing with the disease and has been confused about me being his wife and that we adopted our son 11 years ago, and that he lives with us. He finds the place we live totally unfamiliar at times. He also began wandering a few months ago and has begun being paranoid that someone is trying to fight with him. It is so confusing to know if it is the meds or the disease. He is still very aware and does not want to talk about having anything wrong with him and at this point would not even discuss what we should do when he gets worse. He was in denial for several years and it was very difficult to even get him to go to a Neurologist. He would not do an MRI. His Mother had earlier onset of Alzheimer's and he had to watch what happened to her and I think it was to painful for him to think about it happening to him and our family. Thank you for any advice.
Once I made the decision to place him, the overwhelming stress started to release because I knew the 24/7/365+ caregiving was coming to an end. I hired in-home care to help with bathing and respite for the last two months before I moved him. Leecaregiver1 has it exactly correct. I just have to supply the love, which is much easier when you aren’t dealing with the frustration, stress, exhaustion, anger, resentment and all the other totally normal emotions you go through as a caregiver.
Tour facilities now so you know what is available and you can get on any waiting lists if need be. Don’t make an appointment! Just show up. Bring a friend or family, or find someone else in the same situation who may need a similar facility one day. My whole dementia caregivers support group went so we had many eyes and ears. We also had a wide variety of questions, mine being about how the staff handles sex. Answers varied greatly between facilities.
Finally, if he qualifies, check with the VA. Just be aware that if his service time was not during an actual conflict (whether he fought or not), there will be less opportunities available. The members of my support group are very well versed on this subject. Good luck!
Is your Husband a Veteran? If so there are programs that can help you. Home Health Aid, Adult Day Care.
Some Memory Care facilities also have Day Care Programs. The nice thing about that is if he ultimately needs to move permanently he will be familiar with the surroundings and the staff.
I am sure if you had discussed this with your husband 10 years ago and played the "what if" game he probably would have told you that with the circumstances you are dealing with and the understanding of what is to come he would have agreed to placing him in a Memory Care facility as I am sure you would have agreed that if you developed memory problems you would have agreed to the same thing since your son would need more care as things progress.
As your son gets older, bigger, stronger it will take more to care for him. As your husband declines it will take more to care for him.
If he at any point gets violent the decision is easy, it is a safety issue for both you and your son. Placement would be the only option.
I was lucky, I kept my husband at home with the help of the VA and Hospice but I had said from the start if at any time he became violent or it no longer was safe for him or for me to care for him I would have no option but to place him. Thankfully He was as he always was a kind, gentle man that was easy to care for.
It is not a "failure" to make the decision to place him. You will still be a caregiver but you will be more of his wife. You will still be his advocate.
I would urge you to find some caregiver support groups (try United Way; houses of worship; memory care facilities and the cerebral palsy and autism group sponsors.) You may learn of additional help and get ideas from others facing the same challenges.
Personally, I would avoid the topic of plans for the future, since his disease has progressed --- it seems unlikely that he can make choices or be part of the decision making. Try to spread a wide net of friends, neighbors, relatives that can help you in ANY way possible. Dropping off a meal, getting groceries for you, helping to provide companionship to your husband when you are busy --- anything. Never turn down an offer to help, always have an 'assignment' ready to hand out. Hope this helps.