Expert: Mary Gordon - 5/31/2006

Question
Hi - My father died of Alzheimer's and now my Grandmother is in Stage 6, I'd guess.  She's closer to me than my mother and we always had the tightest bond, even tighter than she has with her children.  The good thing is that she still always knows me and greets me like it's the best surprise in the world (Cherrrrr - you're HERE!).  The bad thing is that she feels I'm the only safe person to confide in.  She won't even talk about it with her husband of 66 years who's by her side sun up to sun down helping her (who she doesn't always know by name and thinks he's two different people sometimes).

Anyway, she always tells me everything's just a mess and she's still alive and that's about the only good thing.  Sometimes she says she'd be better off dead because she's worthless and useless now.  She's incontinent and disgusted that she has to wear diapers, and she fell and broke her hip recently so now she's in a Rehab Center having to do Physical Therapy and she's angry that everyone "treats her like a kid", yet she throws fits and bangs on her bed in the middle of the night an wreaks havoc in general.  She's on Alzheimer's meds, something for bladder control, anti-depressants, and Tylenol when she has pain, but she's so frustrated with herself all the time.  It actually varies between anger and depression about the fact that she can't get her brain and body to work right anymore.

Is there anything I can say that might help her deal with things better?  Is there anything she might be able to do?  She stopped reading and watching TV because she can't follow the stories and the programs, and she can't go out in the garden because she can't walk right now.  I just want to help her get through this stage as easily as possible.

Answer
Hi Cheryl,

Your grandmother is lucky to have such loving family around her. I think you are doing exactly the best thing you can do - you are loving her and spending time with her. She may not be able to participate in activities, but she can appreciate a loving touch, your laughter and smile, you sitting by her side and listening to her. She'll remember the positive vibes and the warmth long after she has forgotten that you visited her a particular morning.

When my mother in law was in Stage 5, she sometimes enjoyed doing simple crafts while we sat and talked, like cutting pictures out of magazines or greeting cards to make a collage, or arranging flowers. She liked having a manicure or a foot massage with nice smelling cream. When she had lost her ability to walk and speak intelligibly, she could still enjoy listening to music, looking at picture books, or being taken out for a "walk" in her wheelchair to the park or the coffee shop so she could see the world go by. She just adored visits from our children, or pets - I'm not sure she even knew who they were, but she certainly lit up when a baby or a pup was in the room. The important part really was the loving attentive presence of family.

She sounds a bit unusual in that she is still so self aware. Most people by later Stage 5 or Stage 6, are not so conscious of their deficits. I know how hard it is to see them struggle,  and not be able to do much to relieve their distress. I think all you really can do is reassure them, and try to divert them from distressing thoughts. We found that if my mother in law was really on a rant, we could sometimes get her out of it with distractions - something funny or interesting (she LOVED photo albums and would really get absorbed in looking at them, laughing about the facial expressions etc.)

I wish there was something more concrete I could suggest. As you know, as the illness progresses, there will less and less distress for her - but less and less of everything else that makes her who she is.

Your grandfather might want to consider talking to the doctor about trying some antipsychotic medication. I know that sounds crazy, but drugs like  Risperdal, and Seroquel can sometimes really help people with Alzheimer's who are anxious and  agitated, or troubled by upsetting thoughts, delusions and hallucinations.

She's so lucky to have you thinking about her. Its such a gift that she still knows how much you care.

Mary G.
Toronto