Expert: Mary Gordon - 6/4/2004

Question
Hi Mary,
Your last response was so helpful, my whole family really appreciated it, so here I am again...
To recap, My dad has been in a nursing home for just about 2 months. Before that he lived at home, but was having a real bad time with living skills, and he had a cancer tumor in his colon the size of a grapefruit. He had surgery for the cancer and that is all gone. In retrospect, we siblings can see where his memory has been going for many years, since before our mother died.  
Here is my new question... Dad's brothers and his lady friend/neighbor think that Dad will get better and maybe even go home.  They are constantly picking at the type of care he gets, calling by brother - who has the power of attorney - and questioning his decisions, and questioning the nursing home about thier procedures.  My brother has included them in the meetings with the nursing home social worker and psychiatrist, but they are still in denial.  Now another brother of dad's is coming from California to "check up on his medical care".  My sister and I think maybe it is time to stop including them in all the meetings, since they don't get it, and their badgering calls to my brother are stressful.  Also, this "lady friend"...Dad has her completely confused with our dead mother, and we think she has taken advantage of his condition for longer that we know.  Any advice on how to handle these people?  They do not have any power to make decisions, but are a constant source of bad feelings. Before Dad's cancer surgery, his brother saw him maybe three times a year - not a best friend by any means.

Answer
Hi Becky - you are in a tough spot. If they are suspicious and worried now, then shutting them out completely is going to make them more so - so you are stuck between a rock and a hard place, depending on how much flack they can give you, and how much it will bother you.

We had something a bit similar in our family when my mother in law was in
mid-Alzheimer's. Her sister and the sister's husband, plus other members of
the family and many of her really didn't believe there was anything wrong
with her. Not only did they not understand the nature of Alzheimer's, but
very far into the illness, if you only had casual social contact with her,
you would not realize how impaired she was, and what a struggle daily life
had become. She could keep up a pretty good social conversation - exchanging empty pleasantries to the point where if they were chatting on the phone with her, or taking her out for a nice lunch, they had no clue she couldn't take care of herself at all, and had no idea what had happened yesterday.

My husband, an only child, took a LOT of heat when we had to act to get her
assessed and diagnosed, get supports arranged to keep her at home as long as possible, and then to move her to assisted living. They were very, very
critical at every step. She didn't like any of it... so we were being mean to
her. We were trying to force her into a home. We were railroading her. We
were after her money. We were taking advantage...blah, blah, blah. Not only
was that hurtful to us (as you are experiencing), but family and friends supported her belief that she was just fine, and even encouraged her to resist things we had to arrange ("Norah says I don't need a housekeeper!" "Margaret says I'm fine and I should say I don't have to move" "Maude says I can come live with her". As per your situation, this made a horrible job 50 times more difficult.

You are going to think I'm nuts - and only you know if this would work with your family..., but the solution for us was to write a letter. Writing a letter lets you organize your thoughts,choose your words carefully, and make sure you cover all the ground you need to cover. It takes away the emotion of a face to face communication or telephone with all the misunderstandings and charged feelings those can entail. It lets the reader read and reread it and reflect (unlike a phone conversation where they get their back up immediately and stop listening to what is being said - at least you get all your points out before they can respond).

My husband spent a couple of days crafting "The Letter". He carefully
covered off everything they needed to know about so they would understand what was going on - what had been going on, what we'd done and why, the assessments and the tests, what the doctors had said, what the social worker said, what the prognosis was (i.e. progressive, incurable etc.) what the options were, what we'd tried. He laid it all out - how she wasn't going to get better, and how frail and vunerable she'd become.

He told them he knew they were worried about her, and that's
why they were asking questions (i.e. he let them know he knew that their
motives and intentions were out of love and they, like him, wanted the best for her). He talked about how he had struggled with what been going on (i.e.grieving and heartsick) and how he was taking the best advice he could find so he could do the right thing.  He made it clear he regretted any of it was happening but that the responsibility was on him, and he needed their understanding and support. He appealed for them to back him and be a partner to help him through this painful time. He was very diplomatic (and it took several drafts to get it that way - the first few drafts were doozies because he was so steamed) , but the subtext was that he was hurt by their lack of faith in him, when he was doing his best to be a good son.

The response was actually better than we'd hoped - I think they were actually impressed that my husband had gone to the trouble of writing the letter - it brought it home to them that he was really upset. Many of them were very much taken aback, since they really had no idea of the real situation, and those that knew some of it did not realize how hurtful their well intentioned actions had been. After that, some of the air was cleared, and we were just quietly assertive and as reassuring to them as we could be - and the flack level went down considerably.

Its an awful thing when you get to be near the top of"the foodchain" in the family - you and your sibs are now the responsible capable adults, and the older generation you may have looked up to as the authorities are becoming weaker and in need of help themselves.  Its hard for them AND for you. They probably see you as the "kids" who should defer to them, and you may see them as more powerful than they are now  i.e. they are probably scared and grieving, feeling their own mortality, ignorant of the facts about Alzheimer's and having a very hard time accepting that the brother they have known and loved is slipping away. Sometimes people deal with those powerful emotions by being prickly and defensive. They may well need support as much as you need theirs - and no matter what you do, some of them won't "get it" until your father gets worse - and then, like us, you will find them crying in the hallway after a visit because they finally understand how this disease is destroying him.

I don't know if this helps at all - but if nothing else, writing a letter will let you all vent your frustrations. You can tear up that one, and write the kinder gentler version later - you just have to keep reminding yourself that they really do have good intentions, even though the expression of those intentions is really irritating and upsetting - but you can be straight up in a letter in a way that is hard to do in a conversation.

Hang in there - this is rough on all of you.

Mary Gordon
Toronto