Expert: Paula Damgaard - 8/13/2007

Question
QUESTION: Hi -

My mother is at the end stages of Alzheimer's in a great assisted living home in MD.  She was there because it is 5 minutes from my sister's home and she went there when my father (mom's caregiver aged 86) was terminally ill and then died 2 years ago.  My sister just passed away suddenly and my mother is still in the home but it is 2.5 hours each way from me and I have a toddler and a preteen in school so it is difficult to visit her. I can go once every 4-6 weeks.  My brother-in-law and family try to go but my sister went every day.  I am considering moving my mother here to another home similar in feel to where she is now (house-like) but I worry that is selfish of me and she would go quickly from the stress.  She is well taken care of there and is with hospice also.  The staff really love my mother but as I said I hate that I'm not there.  My mother has shown signs of sadness and perhaps tears since my sister's passing but it is getting better.  She spends all day in a geriatric chair or in bed and eats 50% of her meals assisted and she is losing weight every month.  She sleeps most of the day but will sometimes respond if you say her name or talk to her - it's just to say "yes" or "ok" or something like that.  Not sure if she truly understands.  Hospice is having someone come sit w/ her one day a week also.  I don't know what to consider and how to decide what is best for my mother at this stage.  I know the staff wants her to stay as does my brother-in-law and his family but she is my mom.  I didn't choose the original home for her but it was fine w/ me because we had to choose and my sister was better able to go every day as I was pregnant at the time.  Thank you for your time.  Hope this made sense!


ANSWER: The song "torn between two lovers" comes to mind!  What a hard spot to be in.  One question that comes to mind is if you moved her closer to you, would you be able to see her everyday?  Having a toddler and a preteen is pretty busy work.  Many schedules to maintain.  Are you sure that the home near you is really as good?  Have you talked to families that have loved ones there?  Visually looking at some place and talking to families sometimes is like night and day.  

I can understand your angst, and this is a difficult question, because if you don't move her you are going to feel very guilty for not being there with her, if you do move her and she dies quickly (which she may or may not do anyway) then you will feel guilty anyway.  So I guess the thing to do is to answer the questions I posed above and see where you stand.  She seems to be in a really good spot right now and I know there are few of those around.  As it appears from what you are saying it seems like her condition is at the near end stage and I am wondering if you couldn't visit her more often and leave her where she is?  I know this would be hard for you, but in the long run it would help you to feel less guilty for not moving her.  

Sorry you are going through all this.  I am sorry about your recent loss as well.  As for your mom's tears, who knows what she is really feeling.  IF she can't verbalize anymore than yes or ok, then it is hard to say why she is tearing up.  But giving her the benefit of the doubt, she should have tears because she would be grieving the loss of her daughter.  One never really knows what they can or cannot feel.  

Please feel free to write again if you need.  Paula

---------- FOLLOW-UP ----------

QUESTION: Hi -

Thank you for your response.  I would be able to visit fairly often if my mom were here as I do not work but I could not stay all day.  I guess I'm asking that if all things were equal i.e. if the home here were as good as the one there what should I do?  

Is it traumatic at this stage to my Mother to move?  I know having things the same is important but is it more important to stay the same or better to make a change but have me there more often?  Have you ever heard of someone at this late stage being moved so far away?  I can visit more often where she is now but the baby doesn't travel well so it wouldn't be too often.  The home there is really good but I am seeing they aren't perfect either as I go more often.  

So...really I'm asking what you think the level of stress/trauma is for moving my Mom at this stage in your experience/opinion.  I know there's no black and white answer but my only experience is my Mom and don't know if the benefit of us seeing eachother more often outweighs the stress of moving her so far and then being w/ new caregivers in a new environment.  

Thank you for all of your help!  
Paula

Answer
Will it be difficult to move her? Yes.  It will probably be very expensive as well.  Since you would probably have to have her moved by ambulance I would think.  Maybe not, but without seeing her and just from reading your note, I would think that that would be the best route.  

It is hard for me to judge exactly how traumatic it will be for her, but any change is hard on these patients.  Moving and new caregivers would be a double whammy I am afraid, but I can't make this decision for you.  I would feel as you do not being able to be there, but again, it will be hard to move her now.  You have to decide really what is best for YOU.  You are the one that will have to live with whatever you do for the rest of your life so do what you think is best that you can live with.  Sorry you are in this position, it is not a pleasant one.  Wish I could help you more.  Paula