What's Really Going On.

I was counseling a caregiver the other day who was having trouble with her husband.  She is unable to go see him in the facility where he lives because he has focused all his anger and paranoia on her and becomes enraged and agitated when she shows up.  The poor woman must rely on the staff at the facility and a trusted private caregiver to take care of him and keep her aware of how he is doing.  However, he has recently discovered the public phone in his wing and is calling repeatedly throughout the day, asking her to bring him things like his address book, his briefcase, important papers he says he needs, clothes, and other things.  He says he needs to make business calls to doctors, lawyers, and various other people and gets very agitated if she doesn't agree.

She asked me what I thought about the staff suggesting she not visit him at all, and whether that was the best thing to do.  She also asked what I thought about these phone calls and whether it was okay not to answer all of them; why he might be asking for all of these things; and whether she should make them available to him.  I could tell she felt terribly guilty about not visiting him and not taking his calls and was uncertain about what to do.  I told her that she should go along with the assessment of the caregivers, and that a visit, while perhaps soothing her feelings and sense of duty, would only rile him up.  I suggested that she use the time to get some rest, take care of her health, and do all the things she hadn't been able to do when caring for him.  As for the calls, I opined that it was perfectly fine not to answer the phone all of the time when she knew it was him calling, and that fixating on one activity or need was fairly common with dementia.

Then we started talking about his requests for his address book,briefcase, etc., and whether she should indulge those requests.  I told her that it was important that she look beyond what he was asking for to the why.  When someone with dementia fixates on these objects or activities they think they need, especially things relating to their former lives, it is not really about the objects or tasks - it's really about what is happening to them.  People suffering from dementia know that something is wrong, that they are not functioning as they used to, and they are understandably agitated and fearful about it.  They are trying to process current events and realities through old roles and memories and the emotions involved can be almost overpoweringly frightening.  Their damaged brains rationalize that if they can only find this item, or perform this task, it will soothe the discomfort they are feeling and bring their world back into balance.  The terribly sad thing, of course, is that it won't.

I remember Dad fixating on events or tasks that we just had to do, or things that he had to have, that really served no purpose.  All I could do was try to soothe the feelings he was having.  I suggested to her that she try to provide things to him to fill his requests that couldn't actually be used; an address book with incorrect phone numbers, or his briefcase filled with unimportant papers.  But most of all, I urged her to just have patience and try to understand what he was actually asking for - some sort of explanation and fix for what was happening to him.  Trying to remember that when someone with dementia is demanding something, they are actually needing something quite different - our understanding, patience, and empathy.