Expert: Mary Gordon - 4/4/2006

Question
My mother 80 had surgery on a large frontal lobe brain tumor in
1999 and has been cognitively declining since. Her language
ability is still fine . She takes ideas in over time, but her ability to
reason on them is minimal. She has two suggestions, "I want to
go home" and "I will leave tomorrow". She is accutely sensitive to
emotions and seems to respond more to the tone of the
conversation than to the content.

This week she refused to go to the beach -- then relented,
refused to go to the art museum, too boring -and did not relent,
declared she was not going to X with me. That raised an alarm:
Our plane tickets are bought. She has no understanding of the
consequences of such a decision, the difficulty of setting up
respite care for a month, etc.

How can I minimize the chances that she refuse to come along
on D day, and how do I estimate the chances of trouble for
future trips?  

Answer
I guess the question for you is ...why do you feel its important to get her agreement to a plan? Why do you feel she needs to be told the details of the your intentions?

I understand your deep and loving wish to be respectful and considerate of her, but given that her ability to reason is impaired, she can't be expected to take in logical explanations - much less make an appropriate response, approve of the ideas, or say "hey, that sounds like a wonderful trip!". She also, sadly, can't appreciate how much effort and thought you have put into your trip planning.  

If you feel you can physically handle her on a trip (i.e. in terms of being able to provide adequate support and supervision to keep her safe and calm), I wouldn't get into arguing arrangements with her, any more than I would argue them with a young child. Distract, divert, cajole, bribe, change the subject, tell her a white lie - whatever. Tell her you are going somewhere fun, and maybe you'll get an ice cream, or hey, lets go for a bus ride, a taxi ride, shopping or a walk - whatever - don't get into the details where she'll balk. She has so little control left over her life and her mind, she'll doubtless dig her heels in on anything she can seize on - even if its something she would enjoy. So, don't tell her more than you need to, be vague, upbeat, positive, make it fun, and don't argue if you can help it. Humour always worked wonders with my mother in law. Even if she had no clue where we were, why we were there, or what we were doing, I could often get her to do what I wanted by kidding her, making some silly joke, making a game out of things. I know its heartbreaking when it comes to that - but what can you do?  

As is common with people with progressive cognitive impairments, she retains the memory of the negative emotions long, long after she has completely forgotten what she was upset about, or even that you argued.

Many people with dementias want to go home, or to leave - even if they ARE home, or have no where to go. The best explanation I heard of this was that they don't really want to go to a physical place. When my mother in law got to a certain point in her illness, she could have been home, and still not known where she was.  What she wanted was to escape from what life had become, from the misery of the confusing here and now - to go to a place in her life, where things made sense, where she knew who she was, where she felt secure, loved, safe and purposeful. She didn't want her marital home of more than 50 years, or the apartment she lived in for the years before she got Alzheimer's - she wanted her parents, and her girlhood, her sisters, her old neighbourhood and all the feelings of belonging and rightness that went with that.  

See how you do this year on vacation - and if its getting to be too much for both of you, when you get back, check out some respite care options. Many facilities do offer programs, and she may do much better than you anticipate. She may be getting to the point where a very structured environment and routines are the best thing for her all around - and a vacation to a new environment with lots of novel activities may be too stressful for her (never mind poor you - you deserve some relaxation and time off as well).

You know her better than anyone. If you are very worried about how she would react to respite care, why not try it out as a trial at some other time than when you are on vacation, just to see how she does. She's doing the best she can with what her poor injured brain will allow. Since she can't adapt, we're the ones who have to change the way we look at her behaviors and motivations.

She is lucky to have you - I'm so very sorry you are going through this. Neither of you deserved it. You are a good daughter, and you are clearly looking out for her with love.

Mary G.