Expert: Mary Gordon - 9/10/2006

Question
I don't have a particular question as I believe your site has answered everything I needed to know.  Why don't doctors and nursing facilities tell you anything? My mother has been in a facility about 2 months.  According to your level schedule.  I know she is in 6 but close to 7.  We have had her in my home for 5 1/2 years and have seen it all.  It took a while for the diagnosis. I don't know if doctors think you don't want to know or that you can't take it or what.  We noticed very subtle changes but thought it was adjusting to losing my Dad 9 years ago.  She was very good at hiding it for a while.
I could go on and on but I just thank God I was led to this site yesterday after much prayer and lots of tears in trying to make the decision whether to leave her in the facility.  I am 57 and diabetic and I have felt like I have been on an emotional roller coaster.  I came to the conclusion that the experts should be the ones taking care of mom. It is a diffuclut decision but I have finally found peace with it.  Thanks!!!
No one can begin to understand unless they have been there.  God Bless.....

Answer
Hi Judy,

I absolutely agree with you - which is why I started doing this shortly after my mother in law died of AD back in 1999. We went through the same thing in terms of really not realizing what we were in for, and really struggling to figure out how to deal with it. I wanted to take something positive away in her honor, so I started doing volunteer work.

I just find it infuriating that most doctors do such a poor job with families in terms of helping them  to understand what the illness will mean, and where to turn for resources and information. I also think doctors really miss the boat in terms of helping people find supports - after all, when families are caregiving, the terrible stress so often ends up damaging caregivers physical and mental health - which absolutely should be of concern to the doctors involved.   

I've had people write to me whose doctors have just shrugged off serious symptoms as old age (what do you expect? She's 80!) instead of helping get a proper assessment and diagnosis, or who were told their loved one has a "touch" of Alzheimers (kind of like being a "little bit" pregnant). Even a pamphlet would be something - many people write me and no one in the medical profession has bothered to tell them the basic truth that their loved one has an incurable, progressive brain disorder that will kill them. It just makes me livid.

I just don't think there are many other illnesses that compare. After all, if a loved one is very ill, but still intact cognitively, taking care of them is so very much different - they are still themselves. And I can't think of another illness where the person effectively dies long before their body gives out. Its just brutal on everyone, and when doctors pussyfoot, families don't prepare. We always try to have a positive attitude about illness - but this is the one illness that requires a family to really think pessimistically so they plan for the worst.

I know you have made your decision, and I'm glad of that and I know how very hard this has been - but I want you to really, heart and soul understand what your job is with your mom. Its to love her. That's what it is. Love means you make sure she's well looked after, treated respectfully, is comfortable, peaceful as possible, and that her dignity is protected. Your job is to hold her hand and watch the tide go out. None of that means you personally have to be the one up at 3 am changing sheets, or spending hours trying to spoon pureed food into her,  or struggling to get her washed up and into a clean nightie. Anyone can do that stuff - but no one on earth can LOVE her like you can, so you pay attention to that and let the rest go.  Your mother wouldn't want you exhausted, strung out, worn thin and desperate - and as you know, if you get sick, that helps no one - not her, not you, not the other people who love  you and need you. She wants you to look after you, because you still have time ahead of you, and her story is almost at an end.

Below I've pasted one of my favorite quotes, and I think its truly apt for someone with a loved one slowly vanishing from Alzheimers. She may be leaving you, but she's not gone. She's in your heart and your memories, and she's set sail for somewhere else.

Mary

A Parable of Immortality, by Henry Van Dyke
I am standing upon the seashore. A ship at my side spreads her white sails to the morning breeze and starts for the blue ocean. She is an object of beauty and strength, and I stand and watch until at last she hangs like a speck of white cloud just where the sea and sky come down to mingle with each other. Then someone at my side says, "There she goes!"

Gone where? Gone from my sight ... that is all. She is just as large in mast and hull and spar as she was when she left my side and just as able to bear her load of living freight to the place of destination. Her diminished size is in me, not in her. And just at the moment when someone at my side says, "There she goes! there are other eyes watching her coming and other voices ready to take up the glad shout, "Here she comes!"