Gayle Sheehy has written a book entitled "Passages In Caregiving" - The article in this issue tells the story of one family of SEVEN adult children who together formulated a plan to take care of their Mother. Whew! IF ONLY...right? It's a feel good story..but I couldn't begin to relate. Fairy tales have good (and predicable) endings and this did. Maybe I didn't get the intent of the article, but it seems to me they didn't even begin to touch how it feels for MOSt OF US who were, indeed "Lonely Caregivers". Judge for yourself. If you don't get the magazine, I think you can find it on line... Maybe I'm too judgemental...but I think seven caregivers for one parent isn't all that "lonely".
Yeah...plus it's children sharing the responsibility of caring for a parent. Not to discredit the pathos of the situation, or the beauty of 7 siblings banding together--that is obviously lovely and heartwarming--but it holds little relevance for us.
yes, Emily.. And most of us Spouses didn't have children who would take that much responsibility - financial, time wise, etc. We were left to work it out on our own. As many other Spouses were as well.
I haven't read it, and forgive me if I say I don't want to either ;) Lynn has 4 adult children, all my age or older! No, they are not now, or have they ever been there for Lynn.... *sigh
I read it. Where did they find this family? I am 1 person, taking care of my Alz hubby. There is no support from his siblings, zip! This article was a fluff piece, but very misleading. No wonder our families don't get it. They read crap like this.
YES YES YES DIANE V AND NIKKI.... I will honestly tell you having children there to help out financially and personally is a fairy tale. Phranque is the only exception that I know of,.his son and daughter are utterly amazing. That is one family out of how many thousands?? OUR six children stayed away...with the exception of one son and his family who would meet up with us at OUR vacation destination (at our expense)...but it was worth it to spend some time with them... back then. (You see I have a *...) I cannot help but resent the fact that they would come if we were on a Caribbean Island or in a condo on a Florida beach....but not come to our home ... One excuse was that the boys ( 9 and 12) would be so bored. Isn't that sad...that they have to be entertained and amused all the time.
AARP,of all organizations should stand behind or efforts to educate the country about the true face of Alzheimers.
My mom had 7 children. After she was found crawling on the floor trying to find the strength to get to the bathroom, the only ones that stepped up to help were my oldest sister and me. I would take her for a couple weeks at a time, but no one else had time. They worked or had too much going on in their life to help. On the other hand the lady I do occasional bookkeeping for has a mother who went blind and can't live alone. She shuffles between her 3 kids homes. So there are so but they are the rare exception not the norm.
I was one of the lucky ones...both kids stepped up to the plate in a big way without having to be asked. They both always told me that they appreciated all that their dad had done for them and this was a way to sort of pay him back. I will be forever grateful and proud that they "got" it!
My children are young and busy--18, 20, 21, 23--in school and exploring their lives, so I wouldn't want them to not have that opportunity. It's what they should do. But they're good kids, and very patient and helpful with their father when they're here. So I can't complain. I can honestly say that if one of them tried to put his/her life on hold for the purpose of helping me right now, I would say no. But, it's also that I don't really need much help right now. I guess we'll see how things look a few years down the road.
Sandi, I also was one of the lucky ones. My 2 daughters live next door and a mile away. They and the SILs were here in minutes if I needed them and they also worked us into their lives by including us in their activities. Like you, I am eternally grateful for the family support I had. My son lives 2 hours away and came in for a weekend monthly and he also would be here if I needed him.
They all three "got it" and are very much aware of the devestation of Alz, however only as a child of a dementia patient - not a spouse. I think you have to be a spouse to really understand fully. They continue giving me their support and time, by inviting me to meals and events with them.
I could of asked for no more from them. Others - about the same as others report here. And, I understand that too, because I am now a widow for 5 months and I should be visiting other widows in my area - I am working on that.
I never asked my kids for help-but I knew they would be here in a heartbeat if called. Many were the times I asked them to carry their cell phones in their pockets when things got bad. At least they accepted the true nature of the disease.
As most of you remember, Diane lived with me and was my co-caregiver for my husband until her shocking death last June. My grandson, who was 19 at the time, and was helping us during the day so that we could continue to work, stepped up to take more responsiblity. My other children who live 8 hours away and in London, come home when they can to help. My husband of 49 years this August and I are fortunate that they "get it" (though it took one son a long time - he stayed in denial until he couldn't any more) and are there for both of us.
I also think that AARP should have an article in each magazine about Alzheimer's and recognizing it; of forming clubs of volunteers to help caregivers; of informing the public of what to say, what they hear that they shouldn't believe; and just informing them of what Alzheimer's patients do in each stage and how to help. And no, I don't want that job! <grin>
Sometimes families do work together. Mine has been doing that for months with my step-mother and father. My sister-in-law calls it "tag teaming" it. My sister lives in Chicago, and I live in Florida. My step brother and sister-in-law live in RI where our parents are- they have done all the work since I moved to Florida 4 years ago. They moved our parents into Assisted Living and then a nursing home, handled all the emergencies, and dealt with my step mother's stroke, and my father's devastation over it. It was too much and not fair for them to handle everything, so we figured out what each of our strengths are and decided it was easiest for my sister to travel, so if another hand is needed, she will fly to RI. I know all about care plans, nursing homes, etc., so I am handling my father's care management, including trying to calm him down and placate him. I talk to all the nurses, doctors, etc. about his problems and care. My brother and sister-in-law have their hands full dealing with my stepmother's declining health.
I guess it's unusual, but tag teaming can be done.
Oh snap, I knew I should have had more kids! While you're at it, I saw this article in the New York Times today.
http://health.nytimes.com/ref/health/healthguide/esn-alzheimers-ess.html Titled: Zen and the Art of Coping with Alzheimer's
The article cites these statistics: 4.5 million people are currently diagnosed with ALZ. 1 in every 10 people over age 65 and almost half of those over the age of 85. Now, at 7 young caregivers per person, let's see.... well, you do the math :)
I read that article and find these statements confusing: "People in this country spend more than a $1 billion a year on prescription drugs marketed to treat it, but for most patients the pills have only marginal effects, if any, on symptoms and do nothing to stop the underlying disease process that eats away at the brain. Pressed for answers, most researchers say no breakthrough is around the corner, and it could easily be a decade or more before anything comes along that makes a real difference for patients....Drug companies are placing big bets on Alzheimer’s. Wyeth, for instance, has 23 separate projects aimed at developing new treatments. Hundreds of theories are under study at other companies large and small. Why not? People with Alzheimer’s and their families are so desperate that they will buy any drug that offers even a shred of hope, and many will keep using the drug even if the symptoms don’t get better, because they can easily be convinced that the patient would be even worse off without it."
I thought it was very important to get an early diagnosis so that if he has AZ, DH could start Aricept, but then I read this and wonder - what difference would it make? Is this irresponsible reporting - or is this the reality of the usefulness (or lack thereof) of these drugs?