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My husband had surgery April 12, April 25 and May 21. On April 12th I was told he has dementia and the anesthesia caused confusion and hallucinations. He was very difficult to deal with. He's had inpatient therapy for all of the surgeries in a nursing home. Today, I was told by social worker and therapists that they definitely recommend he go to Assisted Living when he is released next week and continue with therapy. I feel such a burden since the decision is all mine and am concerned that some family members may disagree, but they have not been involved as much as I have been and won't be affected as much as I will be when he is released. He was told by his doctor this week that he can no longer handle financial matters and can no longer drive. He has not commented on this direction from the doctor. I'm concerned he will deny it was mentioned. He is very stubborn. Since the medical professionals and almost everyone I know agree that assisted living is appropriate, I'm inclined to agree. I'm just so concerned about his reaction when he is told he'll be going to assisted living and I will become the bad guy. Would appreciate any comments and have also appreciated comments I'v received before re: this matter.

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Caring for a spouse with dementia is absolutely heartbreaking. There is no way around that reality. I'm sure that having a parent with dementia is also extremely difficult, but when it is your life partner you have to make decisions for it is almost unbearable. My heart goes out to you.

No doubt your husband does need assisted living care. The question is whether to provide that in a professional setting or in your home, with some professional in-home care.

I can't tell whether you have firmly made that decision, or you are still on the fence. Professionals have observed him and have made their recommendation. And now you must make a decision that will profoundly impact the rest of your life, all on your own, without your life-partner to talk it over with. Heartbreaking.

I fully believe you that "He was very difficult to deal with." Are those difficulties likely to improve any? Is your ability to cope with them likely to improve any? Is it too soon to tell, or have the last two months, largely in institutional settings, given you enough to go on?

My husband's symptoms were very, very difficult when he was first diagnosed. Neighbors, family, and friends urged me to place him in a care center. But we'd just been given a care plan for him and I wanted to see if that might lead to enough improvement to make it managable. I was learning tons on how to do caregiving, and I wanted to see if that would help. One of the difficulties was his inability to sleep through the night. I knew that was a deal-breaker. I could not keep him home if that could not be solved. And it was solved! So I tried hanging in there a little longer. That was nine years ago. Hubby is still at home. We have used adult day health programs, but he is no longer able to handle that, and we now have a personal care attendant for 32 hours a week. A daughter manages his pills. I have cleaning help. (I work full time.) I could not do this alone, but I beleive that as long as what my husband needs is "assistance" I can provide that at home. If/when it becomes too much for me, we'll be looking a skilled nursing facilities, I believe.

Does this mean that I think you should bring your husband home when he is released? No! Only you can make that decision. Either decision will be difficult and heartbreaking. There is no way to make a right decision because the disease itself is so wrong. I'm just sharing the factors I considered in the first months after diagnosis, not trying to say my decision is the one you should make. Another huge factor to consider is physical impairments. Can you husband walk? Transfer from the bed to a wheelchair? Is he incontinent? Can he feed himself? Also, is there any concern about violence?

I know that we hate to have this be a deciding factor, but financial considerations are a reality. How will you pay for an assisted living facility and also maintain yourself living in a community? If you used that money (or some of it) instead to modify your own home for greater safety and comfort and to bring in help, would that make a difference in your decision?

In January 2009 the rehab place where my mother was recovering from an injury advised that she be discharged to a nursing home. My sisters and I talked it over. We decided to disregard that recommendation. Instead we arranged more care services for her in her own little apartment. Three-and-a-half years later, at age 92, she is still enjoying her familiar surroundings. The fact is we knew our mother. We understood her baseline. We knew what impairments could be compensated for. She is declining and she may eventually need a skilled nursing home, but no one has any regrets about disregarding the recommendation of all the professionals at her final care conference.

This has to be your decision. It is highly unlikely that every last family member will approve of whatever decision you make. You are making the decision for your husband's welfare and your own. It can't be made based on what other people will think.

To the extent that you can, try to get the professionals to be the bad guys. I am so glad that the doctor told him he can't drive. It is out of your hands.

Skid 70, once again let me offer hugs and heartfelt commisseration. This is a terrible decision to have to make for a life partner. Make the best decision you can, in love, and with realism, and then move forward with it.
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