Expert: Mary Gordon - 2/23/2010

Question
It has been about one year since I contacted you about my mother-in-law. She had just lost her husband of 63 years, and we were struggling with finding a facility to care for her. We moved her from a lock-down facility to a regular assisted-living facility right after I last spoke with you. Everything has gone quite well - no attempted escapes! However, she has not integrated herself into the community, and by and large considers her fellow residents to be "nuts". Her latest phase involves seeing and being with her husband. This has happened in the past, but seems to have become an everyday occurrence ever since we put a new picture of him in her room. I take it such experiences are common for a dementia victim, but how do you suggest we deal with it?

Answer
Hi Ted,

It's not unusual for people in mid dementia to have trouble integrating. When my mother in law could no longer live alone, she first lived in a  lovely assisted living facility. Because she was memory impaired, she never really did learn to take advantage of what they offered. She could never remember they had a fully stocked kitchenette on her floor, full of snacks and beverages. She'd forget the tuck shop where she could sign for all kinds of necessities - and little luxuries. She would be oblivious to activities and escorted outings - unless someone got her and took her to them. Her cognitive impairments precluded her from really being able to embrace the opportunities and enjoy where she was. She just couldn't get used to it - although I suspect at that point, there was no place where she wouldn't have felt somewhat lost. When she talked about going home, it wasn't to the apartment of her later years, or the house she lived in for 47 years - but to her childhood home.

My mother in law also complained about some of the residents being crazy. It's funny that she had some social awareness with respect to the behavior of others - since she had very limited self insight and couldn't see that she was herself very impaired. Her perceptions of new people were often very odd - in part I think because she couldn't recall conversations or recognize new faces well, so it was very difficult to make "friends" and meaningful connections. She was never really sure who anyone was, or what was being said, and would make things up to fill in the gaps (including some very involved conversations that could not possibly have happened). She would be confused by friendly greetings, because she would think the person was a stranger.

I gave you this link a year ago, but if you haven't read the article in a while, it's worth another look - as it does give some useful thoughts about dealing with a person whose reality is so different than your own.
http://www.alzheimer.guelph.org/downloads/12%20pt%20Understanding%20the%20Dement...

I would go with the flow as far as her delusion goes. Her visits with her husband are probably entirely quite real to her. Her sense of time is all confused. She can't really distinguish between the past and the present, between dreams and memories - and what is real, here and now. If you find it upsetting, you can change the subject - distract and divert her onto some new subject. Work with the delusion rather than against it.  There is nothing to be gained by confronting her or trying to correct her.  All you will do is upset her, and she will retain the memory of her distress long after she has forgotten why she got mad or sad. There is also nothing wrong with soothing and reassuring - and telling white lies to save her feelings. Dementia makes impeccable logic and reasoning meaningless. Even if you make your point, a few hours later, you are back at square one.

To give you a for instance, my mother in law forgot her sister Kay had passed away. Initially, when she asked us why Kay didn't visit, we would remind her that Kay was gone. All this did was make her very upset - every time she was told, it was like new information to her. She also would get very angry at us for "excluding" her from the funeral. She had been at the hospital, the funeral home, the service, and all the family gatherings but she couldn't remember any of it, and was convinced she had been cruelly and deliberately left out of good byes to her sister. In short order, we figured out it was better to put our arms around her and say something like 'You really love Kay, don't you? She's just fine. You'll see her soon. Don't worry, everyone is safe", and then try to get her onto some activity to take her mind in a new direction. Much kinder, and everyone ended up feeling happy rather than frustrated and upset.

In the case of your mother in law, she may even be enjoying her "visits" with her husband. If she was finding any part of the experience upsetting, I'd say move the picture out of sight, but if she's happy, let it be.

Hope this helps and I'm very glad that she has at least settled down and is not as agitated as she was a year ago - or trying to escape!  I looked it up - I answered you last March 1 2009.  I hope your wife is well - and that time has helped heal some of the grief over the loss of her father.

Thinking of you.

Mary G.