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The quilt is overwhelming me. Yesterday I took him to get a new walker. On the way there he was silent. While we were looking at walkers, he struck up a conversation with the saleswoman and seemed so very normal. On the way back to AL, he made sarcastic remarks to me re: items we have to sell; he can no longer use them (one of them: his car). How could he be so pleasant and normal while looking at walkers, and a few moments later sarcastic with me, and then today, very nice and pleasant, even though he wanted me to take him home, but not in a demanding way? I makes me wonder if I've done the right thing by sending him to AL. One week ago, he left AL walking with his walker, told no one, employees at AL, looking everywhere for him. He SAID he walked to convenience store (2 blocks) to get candy, actually he bought cigarettes. He was exhausted walking back to AL wearing cap and coast in 85 degree weather, then one week later appears to be so very normal.????????!!!!!!!!!!! Any comments. Thanks for any insight you can give me.

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How very heart-breaking! Dementia is a very cruel disease -- cruel to the person who has it, and cruel to those who love him.

What kind of dementia does your husband have, do you know? My husband has Lewy Body Dementia, and fluctuating cognition is a hallmark of that disease. Many time he seems quite normal (especially to those who don't know how high functioning he was before the disease). This can last for hours or days. And other times he can't find his way to the bathroom in our own home, and is very confused about simple things. On good days he can play cribbage very well. I asked him the other day if he wanted to play and he said, "No, my brain isn't working so well today."

The literature talks about this extreme variation in cognitive abilities, but within caregiver circles we know that it isn't limited to cognition. The fluctuations exist in emotions and physical abilities as well.

I only have first hand knowledge about LBD. Perhaps other forms of dementia have wide variability, too. I can only say that what you describe would not be unusual behavior over several days for my husband.

Cherish the good moments. Understand that the bad times are not your husband's fault -- they are the disease showing.

Why did you make the decision to place him? I am sure it was not done lightly and with no careful weighing of the pros and cons. Review that when you have doubts.

Hugs to you.
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I'd also like to suggest a book that I've found very helpful: "Loving Someone Who Has Dementia" by Pauline Boss. She writes about our "ambigous loss." Our loved one is both still with us and also is lost to us. You and I, star42, are not widows, but we are not fully wives, either. It is a sad and confusing role, and this book offers hope and compassion.
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Star: I agree with Jeanne. There was a reason you placed your husband is assisted living. I'm sure you did it for all the right reasons. He doesn't see you 24 hours a day, so maybe when he sees you now, it brings things up differently. He can focus in on not being home and maybe be sarcastic about selling his car. Was he sarcastic previously? If so, he is probably conversing in his usual way.

Still, if you were taking care of him at home and his behavior was different, it may be that the intimacy of the 24/7 care, with you as care taker, made him more demanding and difficult.

I'm just guessing here. I'm no authority on ALZ. Just saying that you did your best. He's safe and you can visit him. Don't beat yourself up.
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Star, it really sounds like he needs to be where he is. Does he have a dementia specialist managing that part of his his care? That has made a HUGE difference in my husband's welfare. If that is not already part of his medical team, I strongly suggest it. All behavioral changes should be discussed with his doctors.

It is very, very difficult to go from being an equal partner in a loving relationship, to being in charge of everything and having a dependent who has to be monitored and managed. It was very sad to have to take my husband off our joint accounts and give him his own small-balance checking account, like giving a youngster an allowance. This is NOT how we want to treat our husbands! The nature of the relationship has changed so drastically and so dramatically that it does indeed seem like an ongoing nightmare. The only constant is my continuing love for this person who was once my full partner and is now my dependent, and my devotion to his best interests.

Again, cherish every good moment that happens.
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Star - my heart goes out to you; you have been given some wonderful answers above. You are dealing with an extremely stressful situation and believe me, I know how difficult is when a loved one is in a facility with dementia and capable of plotting and planning. And then we have to undo the mess created.

One thing that helped me with my mother was that I was her POA and health care proxy representative and her health care proxy had been invoked by the doctor at the nursing home. With this accomplished, no one could take my mother out of the facility but me. This worked out in my situation, but I know it might be difficult in yours, but at least sister could not take him to bank, etc.

You have nothing to feel guilty about; you have done the right thing to keep your husband safe. If you can, redirect conversation when accusations are made toward you; or if it is an "off" day - don't stay too long. Taking care of someone in a facility is as difficult as someone at home; just different settings resulting in different problems. Sadly, dementia slowly robs a person and their loved ones of the person they once knew...changes will continually occur - good days and bad days. You are a wonderful wife. You are entitled to a life too - try not to feel guilty and do some things you enjoy - you deserve it and it is better for everyone. Blessings to you and take care.
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I have talked to the attorney. He knows the situation. He told husband if anything should caused problems with our marriage that he would not represent him since he has also talked with me and that he would send doc. ltr. confirming dementia to any attorney husband contacts.
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That is not unusual for Alz pt's to wander long distances away from home or faculities in our state many counties are getting tracking devices for the elderly to wear I think on their wrists so if they wander they can be found. Years ago I was on my way to work and an elderly lady was walking barefoot down the road near a NH and I was about to turn around and go to the police station to report this and a police car pulled up to her where she was walking.
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Good. So the "divorce" crisis is thwarted, and financial risks are minimized. You are a strong woman doing what you have to.

Take one day at a time. Enjoy every "normal" moment you have with your husband. Try not to take the bad moments to heart, or too personally. It is the disease forcing this behavior, not the man you've loved all these years.

Take care.
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samualjames, I am in the tenth year of taking care of my husband who has dementia, which is indeed a disease that affects a person's brain (to the point where what the person thinks they want may not be good for them at all.). I belong to a local dementia caregivers' support group and have been active in an online group for years. I have seen spouses agonizing -- for weeks and months -- over the decision of whether placing their loved one in a care center would be the best for all concerned or whether to bring in more in-home care and/or try different drugs. We consult specialists, spiritual leaders, other family members, and look deep inside ourselves in an attempt to provide the best quality of life we can for our dear life partners. This is a heart-wrenching decision no one should have to make, but we make it as best we can.

I guess we could skip all the agonizing and consultations, samualjames, and just use your simple test. If he doesn't want to be in a care center, bring him home where he will live in peace. Oh, but wait, the fact that he is definitely not a peace is why we were agonizing over the decision in the first place ...

Sheesh ...
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I totally agree with Jeanne. If he were taken home because he does not like AL, NO ONE would be at peace. The agonizing, heart-wrenching decision to send someone to AL is a decision no one ever wants to make; even though we believe it's the right decision after consulting the medical experts and anyone who has observed the dementia patient's behavior; we are constantly beating ourselves up hoping and praying it was the right decision as well as praying that we, as well as our spouse, can somehow find some peace of mind., although this is very difficult when the spouse in AL is constantly making phone calls from his cell phone to banks, attorneys, etc. Then I am constantly contacting the recipients of his phone calls to do damage control and try to keep our finances intact. I cannot take his cell phone away; he is much too demanding and without it (I tried it) he is constantly using the business phone at AL. He also does need the phone to keep in touch with members of his family.

Samuel James, do you have personal experience with someone who has dementia?
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