Oh mercy, this is a hard one. I live a distance from my Mother and last year called to wish her happy day on her birthday. As i tried to speak with her, she responsed, ” i do not know you, you need to call one of my children”. There are some sentences that do not have words among the consonants and vowels. Have spent time with my Mother since that call, and have found a quite gentle joy in just joining in the moment, such as it is. Blessings to all

Shelia, thank you for the poem. Very moving, very true and, just like the disease, very heartbreaking. All I can add to the conversation is for each of us not to try to be all things for the aging parent. My darling mother is now gone and, as difficult as it was to accept, she did leave us at the best time. She did not suffer from Alzheimer’s but rather dementia. As her body simply wore out, her mind retreated into the past, and then into a place we did not know. My sister and I and our youngest brother worked very hard so that our mother could remain in her own home for as long as possible. Then she fell. Three long years in a nursing home, slowing leaving us one day at a time. She had some money though in another three or four months we would have been forced to accept governmental aid. In California, personal assets must be drawn down to $2,000 before aid is granted and then it is only granted if the person no longer lives at home; the recipient must reside in a nursing facility. All private insurance stops after a patient is admitted into a nursing home so everything is paid for privately. Room, nursing, wheelchairs, all manner of medical necessities, and, of course, all personal items. You are allowed about $40 each month to pay for personal items, including laundry, and TV. There is no spare change. As I said, we managed Mom’s money and income so that she was able to remain a private-pay patient in a private room but other then that the care was the same as given to the patient whose funds were already depleted and was essentially a ward of the State. Cost then just about $7,000 per month; and that was three years ago. It is very important that power-of-attorneys (financial and medical) be signed while a parent is still cognizant. The same is true for Trust Funds, if the parent is planning on leaving inheritances to children and/or grandchildren. If those monies are not protected, they will soon be consumed by health costs. And all of this must be done early, not at the last minute; otherwise, the State will assume you are hiding assets. And, finally, don’t beat yourself up if you can not do everything. It is heartbreaking to sit next to your mother and she not know you. My mother thought I was her own mother at the end and that was just fine with me. If you have siblings, don’t force them to help if they will not do so voluntarily. I have many brothers but only one would actually take over some of the responsibilities. The others would come if we said “be here” but they could not handle any of the care….they could just visit; that was enough. For all you who have written such poignant comments, my heart aches for you. You are all doing the best that you are able. Try to take a day now and then just for yourself. My sister, youngest brother and I have often commented on how we would not have been able to cope on our own. None of us lived in the same city; Mom was hospitalized in a fourth city because we found a better nursing home there. Don’t hesitate to look around, visit these places, ask questions, talk to other residents. Don’t take anything for granted. Every single decision will be riddled with difficulties.

So many of you ladies have posted painful thoughts and memories. No one can understand the loss except those who love them. My brother is in a home with this heart-wrenching disease. It’s so devastating. They look but don’t see - that vacant look. My brother socializes with the other ladies at the home, thinking they are his wife. Did you read Sandra Day O’Connors poignant article in the news where her husband, suffering from alzheimers, fell in love with another lady/patient at the home. When Sandra O visits him, she must endure the pain of seeing him hold hands with the other lady. You wonder sometimes how much a person can bear. It appears that each one of you are doing the very best you can under impossible circumstances. Please don’t be hard on yourself.

It is nice to see everyone so sympathetic, but what we need is action, too. My husband has been a hemiplegic,now a triplegic (?) with brain problems, too, after a stroke 16 years ago. We were comfortably off, but by no means wealthy. He has been cared for at home, in nursing home some years, in my daughter’s family for many years. She can’t cope with it anymore, I am retiring on a small pension now and plan to take over most of the caregiving with some help (maybe I can afford 3 hours a day), but his IRA is slipping away. To get Medicare to pay for a nursing home we have to “spend down” (this is the legal term) to $79,000.- which is left for me. I also get to keep the house I have. How am I supposed to live on that? He is 15 years older than I am, but the financial worries and caregiving and dealing with caregivers are doing me in. People say we look the same age! He has no worries past the next meal and is rosy-cheeked and rested. Yes, it is tragic what has happened to him, but what about the rest of the family and what will be available for me? The thing that bothers me about this blog is that it was started by admirable women, but women who are quite well off. I get really irritated when I see threads like “What do you sleep in?” for example. I do NOT find them amusing or relaxing or anything but frivolous. When are we going to get real in this country and give people help rather than laughs. It is time to address serious issues and get the laws changed before most of us end up in poverty. We think we are the middle class. Well, maybe we were, but pretty soon there will be only upper and lower classes in this country and will we still be laughing? We need to do something NOW.

Thank heaven it doesn’t seem to run in our family - But I find it consoling to hear that the sufferers of Alzheimers are in a zoned out world of their own & not unhappy. It’s the caregivers who need to take care.