Expert: Mary Gordon - 1/5/2007

Question
My mom, who has early stage dementia, entered assisted living reluctantly two months ago at the insistence of her doctor and myself.  Any novelty has worn off, and at every visit she cries and tells me that she misses her home and her independence and this is "no way to live".  She was a danger to herself, had fallen several times and had left the gas on etc.  The dementia has severely effected her judgement and her ability to listen to reason.  Her language difficulties make it impossible to have a productive conversation around such an intense, emotionally charged issue.  If I try to change the subject she eventually brings it right back.  Any suggestions about how to best deal with the issue?  How long will this grieving process last?

Answer
Hi Lauren - have you thought about trying her on a course of antidepressants?

A lot of people in early to mid AD get very depressed, and it contributes to general purpose agitation. I know how hard it is to deal with her distress, especially when she has no insight into her own situation, and can't be reasoned with. I think they must live with a huge amount of anxiety, given that life has become a confusing swirl that they can't quite grasp. I've often thought it must be like being dead drunk at a party full of strangers. You keep trying to focus and figure out what's going on, and everything is just a blurry jumble.  

Have you tried just comforting her and reassuring her? Its worth a shot to just hold her and agree with her distress (ie. you don't have to lie, you can just tell her you are so sorry she's upset and you know she misses her old life, and  its all just unfair and rotten.

At our house, I ended up being the bad cop and my husband (my mother in law's only child) was the good cop. I was the one who told her what needed to happen (i.e. I was the big meanie), and my husband's job was to hold her hand, and tell her how sorry he was and agree that she'd been dealt a crummy deal by life. The really strange thing that transpired is that we soon discovered she'd forgotten she was ever married, so the home she was agitating to return to was her childhood home.

That reality made me feel that what she wanted was not to go "home" to her old apartment, but back to a place in her life where she felt secure, where she  belonged, where she understood her place in the world, and had purpose and meaning she could grasp. Looking at it that way really helped us to deal with her distress.

I know you know that there is no point to argue with her, since she can't follow the logic or think through her situation - and all she retains after the fact is her emotion (i.e. she remembers none of the sensible things she's been told, just that she's upset - and that distress lingers long after she has any idea WHY she's feeling unsettled).

It might be an idea to come to visits with an activity plan in place - i.e. rather than just sitting for a visit, come when there is something going on like a scheduled activity, bring photo albums to look at, take her for a little walk or out for lunch or a cup of tea (if that is managable). I'm wondering if having something to do might move her focus off the go home issue. I don't know what the assisted living facility is like, but certainly the one my mother in law was in had many, many interesting activities. My mother in law, unfortunately, was often too confused to realize that she could attend various things - she was also hampered by her inability to read and comprehend schedules and calendars. We made a point of keeping track of when they were having events and showing up to escort her to church services, little concerts, special teas or parties, the hairdresser's visit, fashion show....whatever was going on. It gave us something to do, and made the visit more pleasant, especially when it became hard to carry a conversation on with her.

How distressed is she when you are not there? Do the staff report her crying, agitated or distressed ? I would talk to the doctor as a first option about trying some meds at a very low dose to see if it helps.

Its hard to say how long it will take for her to adjust. Is she making any friends? Is she able to be involved in any activities? Are they finding her cooperative, or is she getting wound up a lot? I'd be talking to the staff to find out whats going on when you aren't there, and seeing if they have some suggestions. Are there any little jobs they can give her to make her feel useful?  It is a hard adjustment - but you are between a rock and hard place, given that there really was no practical alternative. Its like being a working parent of a kid having a hard time adjusting to daycare. Its the best option you have, and you just have to hang in!

I wish there was something more I could suggest - I know this is very hard on both of you. However, you know she's safe and being well looked after, so hang tight - you are doing the very best you can. Thinking of you.

Mary