Expert: Mary Gordon - 5/27/2004

Question
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. Besides the Alzheimers, he is in a wheelchair because of bad arthritis in his knees. He wants to go out - as in away from the nursing home, for a meal or a ride - all the time, but we are afraid it would just make it worse for him since he sometimes thinks he will be going home soon. He will never go home. My question is...will taking him on an outing make it worse for him to adjust to the nursing home? We don't want to do things that would confuse him more than he already is. He gets fixated on going out, and of course, he will forget he has gone, but it hurts to disappoint him too.  He is a large man, and if he becomes difficult when we are out, it would be hard to control him - not that he is going to RUN away or anything like that!  :)
There are 4 of us siblings and other family, so he gets company 3-4 days (at least) a week.
Thank you,
Becky Golden

Answer
Becky,

I really feel for you - it is so hard to be doing your best for someone you love and not be able to do much about their distress.  It's not your fault.  He has been going through loss after loss - when you think about it, its actually amazing that more Alzheimers patients don't get really blue.  AD is just one long goodbye, isn't it? Old age is not for the faint of heart under any circumstances.

My late mother in law (who died in March of l999), also used to talk about "going home" all the time -  but the home she wanted to go to was the house she grew up in, where she hadn't lived for 50 years.  One of the most insightful comments I ever read suggested that what this was really about was the person expressing a wish to return to a point in their life when they felt safe and secure, when they felt surrounded by loved ones, when they had purpose and direction and the world made sense. I'm sure we could have taken my mother in law to her old home and she wouldn't have known where she was and would still have been asking to go home. It isn't really about the physical place - its about the feelings that went with the place - that sense of belonging and knowing what your place in the world is. I found that when she became agitated about going home, she was often calmed by hugs and reassurances that everything was okay, everyone was safe and that we could go soon and she would see them all soon (the "everyone was safe" part was untrue, since most of the people she fretted about were long since dead - but no point to upset her with that information - white lies are the more merciful approach when someone has forgotten that so many loved ones are gone).

Sometimes, I think that the brain damage reaches a certain point, and nothing looks really familiar to them anymore, not their surroundings, not the people around them - everything is a big jumble and so confusing to them. They aren't really sure where they are, how they got where they are, and your explanations vanish from their memory in a few moments - it must be very disorienting and upsetting.

While I don't think that taking him out will hurt him, it won't necessarily help him at all either - and if its difficult for all of you to accomplish safely and without getting stressed out yourself - then its not really doing much for anyone. He has lost his ability to adapt to any novel place or situation, and he may not really be completely aware of where he is. He can't adapt, he can't learn, and so his request is probably just a plea to be anywhere but where and how he is - and no matter what you do,  this awful disease goes with him. It breaks your heart.

My mother in law often got taken for meals, or other outings and would immediately forget she'd gone - so she'd seem to enjoy them at the time, but be back complaining the next day that no one ever came to see her or take her out. Like you, we also found it more and more difficult to take her out safely - we needed several adults with us all the time, since someone had to be with her every second. The last time we tried to bring her home for a family dinner, she had a catastrophic reaction when my husband tried to bring her to the car   - I suppose just being outside and feeling cold air on her face - she just went wild, screaming and flailing, and my poor husband couldn't get her into the car.  It was very upsetting and totally unexpected - but that was the end of that - we realized very sadly, that she did better when she was in a totally stable, predictable environment, and that we couldn't manage her adequately outside that world.

My best advice is to reassure, divert, distract, and get him on to some new topic if you can. Put your arm around him and tell him everything is okay, change the subject, come up with something else for him to focus on (we often used to bring a photo album with us, since my mother in law would always enjoy looking at pictures, and it would get her off whatever groove she was obsessing about.

I'd avoid trying to reason with him, or argue with him - his "reasoner" is broken, and he won't be able to understand let alone remember your logical points. Just change the subject and move on. If you get him upset, the emotion will stay with him much longer than his memory of what he was upset about.

You might also want to watch and see if there is anything that causes the behaviour to be better or worse i.e. is he more insistant about going out at a particular time of day?  Do shorter visits work better than long ones?  If you plan an activity with him on a visit so he is distracted, does that make the visit go better (i.e. looking at pictures, visiting with a baby or a pet, listening to some music, share a snack). How about timing the visit right before a scheduled activity for him, such as a bath or a meal, so he is immediately busy when you are leaving.

He is so lucky to have you and your siblings so involved. I know that this is an awful thing to deal with, and I'm so sorry you all are going through this. It just isn't fair.

Hope this helps.

Mary G.
Toronto