Expert: Mary Gordon - 1/20/2009

Question
hi Mary,
  mom is in a ad home and has been for 5 months now. my question is i was going to see her every day but it was so hard i am now going every other day do you think that its hard on mom because she don't see me every day now? im feeling like im letting her down.she is in stage 7 she cant smile any more and she is having trouble holding her head up.she stopped wearing her teeth and im worried she will stop eating she don't eat much as it is.she don't talk very much and when she does the first few words comes out good but then i cant understand what she is saying. her roommate  is putting every thing down the toilet so now mom cant have toilet paper or paper towels or soap to wash her hands . mom still walks around and does go to the bathroom on her own (sometimes) she is in depends. she is in good health all but her ad. she don't know who i am just that im there alot.i believe she thinks i work there. should we have mom moved to another room ? or would that be hard on her? i pray every night that god takes her on home is that wrong of me? people say having her like that is better than not having her at all.what they don't understand is mom wouldn't want to be like she is now let alone whats to come for her .every time i go see mom i look around at every one there and all i see is moms future it brakes my heart.
   thank you so much for being here for all of us.
   thanks again  sandy

Answer
Sandy,

I wouldn't worry about your mom missing your visits. She has no short term memory, and everything in her life is one big blur. She isn't really aware of the passage of time like a normal person is. She probably has a very limited idea of where she is, what is going on around her, or who is with her - and even if she knew you were there at any particular moment, and figured out who you were, five minutes later, she would have forgotten.  So, I wouldn't fret about not being there every day. You have to take care of you, and visiting daily can be very stressful and upsetting.  I know how depressing nursing homes can be, and I totally understand what you mean about seeing your mom's future in the other residents. We used to find relatives in the halls outside my mother in law's room crying because they just couldn't stand seeing her like that. Like you, they were also really upset at seeing other patients in the ward who were worse than her because it was so awful to know she was going to be like them in short order.   

I think they are like tiny children in the later stages. I'm not sure there is much conscious thought about anything going on. They are living in the moment, and I think she is really just aware of feeling comfortable and safe. They are not aware of their past or their future - they are just living in the now. That is probably a kindness, since she won't be tortured by regrets or worries.

If your mom's roommate bothers you, ask for another roommate. I don't think it would make much difference to your mom at this point which room she's in, or who her roomate is.

I doubt if she can wipe herself or wash her hands unless someone is with her to help her or remind her what to do, so roommate or no roomate, her hygiene is going to be a challenge. She'll be like a small child, who won't think about germs or mess. My mother in law used to use towels, her sweaters, anything she could grab. And then she'd hide it instead of putting it in the laundry hamper, so we'd find dirty underwear in the toe of her shoe, or in the pocket of her coat.

I do understand your prayer for a merciful release for your mom - I think that is normal when they get to the later stages. We felt the same way, because it was so terrible to see, and we knew that she was living her worst nightmare. We felt guilty as well, because essentially we were praying for her passing. You'd have to be made of stone not to feel that way when you see the person getting worse and worse and there is no hope for improvement. You love your mom, and you don't want her to suffer, and you're scared about what comes next. She can't be helped in this world, so of course you want peace for her.

Just keep telling yourself this is much, much harder on you than on her. With your intact mind, you know what will come next, and you are worried and fearful. She is blissfully unaware - and as the illness progresses, she will be less and less aware of what is happening to her. She will sleep more and more, and move less and less, until she is almost oblivious. My mother in law died of end stage AD, and I promise you, although It was brutal on the family, she seemed quite content, quite serene and comfortable, and not in any pain or distress at all.  

Don't feel guilty. You are doing your best, and that is all anyone can do. Anyone who says having her alive, no matter what her condition, is better than her peaceful passing has never been in your shoes. Alzheimer's isn't like other diseases. Its like the person you know is gone, but their body lives on. Its like having them laid out but never having the closure of a funeral. It's exhausting and draining, and it's agony. I really do think sometimes living on can be worse than a gentle swift passing.

You hang in there, I know exactly how you feel.

Mary G.