Today a friend & I went to AL and played cards with my husband. He seemed so normal and pleasant; I felt terrible leaving him there.

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.

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.

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.

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.

Thank you all for your comments. He has not been home since the dementia diagnosis, although in hindsight and coversations with his friends and acquaintances, I've learned that many people noticed his decline and change in personality. I, too, knew something just wasn't right for the last year to year and a half. He just seemed a little off. He was gone all day, hoarding papers, some important papers, contracts, etc. in his car. (It was incredibly dangerous for him to be driving, if he were home, he'd insist that he can drive) When he was home he was either in bed very early watching tv, or eating supper with little or nothing to say. He seemed so secretive or stand-offish. He had 3 surgeries within 6 weeks, the first was planned, the other two were results of his behavior following the first surgery, broke his hip, it was pinned; he refused to do as he was told by medical personnel, so due to that and soft bones, hip broke again and was then replaced. Following the first surgery, he displayed a great deal of confusion, hallucinations, etc. I was told some of that was due to the anesthesia, but it was much worse because of the "underlying dementia" as one doctor told me. I was so stunned, I think I went into denial and planned to take him home after his rehab in the nursing home. However, with advised from various medical professionals that AL was their definite recommendation. I was convinced taking him home would be a mistake and then it would be very, very difficult to send him to AL. Even though he's in AL, I am still a wreck. He continues to demand that he come home...as he says: "for a few hours so we can have some personal, intimate time together". It's very hard to tell him no and he keeps asking, thinking eventually, he'll get the answer he's looking for. However, I know he's not capable of any "intimacy" any more, and of course he either refuses to accept it or knows that's true, but denies it. He continues to say that I'm the one with the problem and I need to see the doctor. He's incapable of handling finances; however, drew money out of the bank when he got a ride, now I've had to take additional measures so that does not happen again, which has upset him tremendously. This just seems like a nightmare and I am unable to wake up. I wish there were some way he would settle down and be a little calmer and more accepting of his environment. The AL is very, very nice and homey, home cooked meals, all the employees there are very kind and thoughtful. Just don't know how to get this "intimacy" issue off his mind. Selling his care upset him to the point that he called the salesman and told him the only reason "his wife took it to them is because we are having marriage problems." He has mentioned divorce, since we are living apart he thinks that's the only answer and then he could live by himself in an apartment and go back to his life "just like it was before." Thanks for the suggestion of the book, I've also heard about a book: "The 36 Hour Day". I plan on looking for both of them tomorrow if I have time. I don't know what Lewy Body Dementia is. He had in the past a few minor TIAs (minor strokes) with no lasting effects, but I'm thinking they could be some of the cause of the dementia.

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.

How do you deal with a husband with dementia and his sister (who is convinced there is absolutely nothing wrong with him) who picked him up more than once, took him to the bank (and denies it)? This is the second time she did this; this time my husband told me a friend of his was picking him up and taking him out for coffee (I contacted the friend who told me that was not the case; he refused to take him). When I arrived at AL, husband was gone, I called his cell phone and he told me his friend's son (also a lie) picked him up and took him out for coffee. Actually, the sister,(my husband told she was in another state) took him to the bank again. I am protecting the money from my husband and had just enough money in the bank to be used when the health insurance company deducts the monthly premium, 4 days from now. Now, there is no money for the insurance premium. I had already requested that the premium be deducted from another account, but the transaction will not be effective until next month. Just 3 weeks ago, his sister took him to the bank and of course denied it. He withdrew $100, which I know he spent on cigarettes (he had not smoked in 4 months and this started the habit again)Additionally, my husband was overheard in AL that he planned to withdraw his entire social security check in $100 bills in cash, which he also would have done today, but since I was alerted in advance, I made arrangements with the bank 2 days in advance and managed to save that money. How can he have dementia, and plot and scheme to do such things? Am I the one that's delusional; although everyone but his sister can see he's having serious problems with judgement, rational thinking, etc. I've tried so hard to be understanding and patient, (I know he's sick) but not sure how much longer I can tolerate this behavior from him and his sister who hangs up on me if I try to explain the dementia. There are many days that I now feel physically sick and I'm not even living with him. He told me that he's been "very lenient" with me so far, but I have 3 days until his attorney is back in town to decide if I want a divorce or separation, since he insists that he is not staying in assisted living!! If I could afford it, I'd give him the divorce he wants so he can (live his life like he used to on his own), but I'm afraid I'd lose the house and could not afford to purchase another one, and at age 70, have no job. Anyone ever deal with something like this or have some helpful advise?
Thank you anyone for any suggestions.

You are not delusional.

Your husband is cognitively impaired, but that does not mean he cannot plot and scheme. He has poor judgement, but obviously he can still (with help) carry out his poor choices.

It is a good thing you were able to minimize the damage his sister could assist him in doing to the bank account. Next time he'll not be able to do even that much, and maybe his sister will give up on "helping" him. (Could his sister be in the beginnings of dementia herself? She sure is showing poor judgment.)

I certainly have not had to deal with the divorce issue. Here is what I would do. If he does call the lawyer, I'd also call the lawyer and explain, calmly, that hubby has been diagnosed with dementa, that he needs someone to care for him and look out for his best interests, that I intended to be that someone till death parts us, and that I would fight the divorce tooth and nail.

Good luck.

Star, I agree with Jeanne. I would also add in the conversation with the attorney that your husband has been diagnosed with dementia and if he (the attorney) tries to take advantage of his mental situation and file for divorce proceedings, you will report him to the bar or law association and file charges. You might also check into a restraining order where his sister is involved or at the very least, get infor from the AL as to what steps are needed to keep her from taking him from the facility. Her judgement is very poor and her actions cause damage to you and encourage his bad behavior. My guess is that she is feeding this divorce notion. It needs to stop.

Sending you positive energy and love. Cattails

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.

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.

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.

My husband did not have dementia but threatened to divorce me and take everything so I called the officer in my bank that night and she said to be at the bank at 8 the next morning when they opened and I changed the checking account to my name only by opening a new account because we had auto withdrawel and deposits I would have to get in touch with each organization but as far as any additional monies would be putin my account and got a savings account in my name and transfered all the money into my account since the account was in both our names I did what he threatened to do in the first place-he never found out about before he died and his threats were groundless.

Dementia is a disease which affected person brain.Therefore a person like you require special care and attention as he is not aware of what he is doing.After reading your story I can conclude that he is no more willing to live in AL therefore he has taken this step.So it is a suggestion for you to take him back to your home.he will live in peace there with his family.

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 ...

Well said, Jeanne

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?