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#212085 - 04/13/11 05:47 PM Generation Alzheimer's - Disease Defines Us
Anne Holmes Administrator Offline
Boomer in Chief

Registered: 03/11/10
Posts: 2682
Loc: Illinois
Are you concerned about Alzheimer's Disease? My mother is concerned that people she knows are facing a number of dementias.

Here's a good site that offers info for Boomers and even offers free report, "Generation Alzheimer's: The Defining Disease of the Baby Boomers," which sheds light on a crisis that is no longer emerging – but here.

Check out the site:
http://alz-news.org/


Edited by Anne Holmes (04/13/11 05:48 PM)
_________________________
Boomer in Chief of Boomer Women Speak and the National Association of Baby Boomer Women.
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#212208 - 04/18/11 07:20 PM Re: Generation Alzheimer's - Disease Defines Us [Re: Anne Holmes]
Anne Holmes Administrator Offline
Boomer in Chief

Registered: 03/11/10
Posts: 2682
Loc: Illinois
This is a report that's worth spending some time with...


The numbers are just staggering: According to the new Alzheimer’s Association report, "Generation Alzheimer’s," it is expected that 10 million baby boomers will either die with or from Alzheimer’s, the only cause of death among the top 10 in America without a way to prevent, cure or even slow its progression.

Of course, as we all know, while Alzheimer’s kills, it does so only after taking everything away, slowly stripping an individual’s autonomy and independence.

Not to mention the negative cascading effects the disease puts on millions of caregivers. Caregivers and families go through the agony of losing a loved one twice: first to the ravaging effects of the disease and then, ultimately, to actual death.

and then there's the financial impact: In addition to the human toll, over the next 40 years Alzheimer’s will cost the nation $20 trillion, enough to pay off the national debt and still send a $20,000 check to every man, woman and child in America.

And while every 69 seconds someone in America develops Alzheimer’s disease today, by 2050 someone will develop the disease every 33 seconds - unless the federal government commits to changing the Alzheimer’s trajectory.

So this is a disease for which we need to start fighting as hard for finding a cure as we have fought for any other disease to date.....
_________________________
Boomer in Chief of Boomer Women Speak and the National Association of Baby Boomer Women.
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#212561 - 05/04/11 12:45 PM Re: Generation Alzheimer's - Disease Defines Us [Re: Anne Holmes]
Dee Offline
Member

Registered: 06/27/05
Posts: 2559
Loc: Alabama
Anne...I wrote the following as a 'note' on my FB page. I wanted to share it here if I may.

My Aunt Mary has Alzheimer’s…I visited her this past week and had the most incredible moments with her…some that brought me to tears. Her husband, my dear Uncle Norman, 86 years young, will not allow her to be anywhere but home. Vivian and Sandra, sisters who are nurses, share their time taking care of Mary. The rest of the night my Uncle lovingly cares for his wife of 63 years.

Aunt Mary is in stage 4 Alzheimer’s, cannot feed herself and is unable to walk without assistant and that takes major coaxing when she does. Most of the time she sits either in her wheel chair or her big easy chair focused on TV or whatever catches her unorganized thoughts.

When I arrived Sunday morning she and Uncle Norman were in the living room with Stella, another Nurse. Uncle Norman hugged me and kissed my cheek and patted my chin. I looked down at Aunt Mary, who did not recognize me, and she had a scowl on her face. She looked at me and said, ‘well, well, well, well, well…” and shook her hand at me as if to sweep me out of her way. She obviously did not like Uncle Norman showing me any affection. It amused me and Uncle Norman and after a few hours of being around her, Mary decided I was not going to steal her husband. Poor darling couldn’t remember that I am her niece.

Stella explained to me Mary’s condition and how going slowly would help her react to situations. Loud noises and a lot of chatter and laughter made her uneasy and fuss incoherently.

I had intended only staying one night but stayed four because I was having such a wonderful time with my aunt and uncle. Uncle Norman still works as a lock smith with the company he founded…run by one…himself. He scoots his way to his van and off he goes. The man is amazing and my hero.

By the second day of my visit Mary was allowing me to get close to her and she liked the baby doll I brought with me and gave her. She sometimes would fuss over her sweetly or she would look at it in complete bewilderment…sometimes she would poke at it and other times would pet it and cuddle it.

Taking Stella’s advice I always talked softly with Mary and would get down on her eye-level. The most tender moments with her happened with I would feed her. She would lean in to me and look deeply into my eyes…she would just look at me and I could feel her searching…perhaps remembering me…or perhaps just curious as to who I am.

Her skin is old, wrinkled, darkened from bruises that can’t be helped, blood thinners or just from being old. What I remember most is how soft her skin is, especially her hands. When she would touch my hand or arm she was ever-so-tender…as if touching me would break me. Sometimes we’d hold hands and oh those moments are so precious in my heart. And her smile…she has a smile that goes from ear to ear and lights up her entire face. Just as suddenly as a smile would appear it could disappear and she would be lost in a world that produced a blankness in her eyes. Sometimes she would put her face in her hand and my heart would break for her. Where was she? What was she able to think? Was she hurting? Was she tired?

The nurses all tell me that Mary is not all lost. She proved that by calling Norman when she wanted him. She called her daughter’s names and when I was feeding her grapes she would let me know in her own way that she liked them and that they were ‘good’. She always smiled biggest when she was eating something she really liked.

Twice during my visit she melted my heart. Once when I was close to her talking face-to-face…she puckered her lips and made kissing noises to let me know she wanted a kiss. My heart sang when she did that and I kissed her and watched her face light up the room. It was such a precious moment. The second time was when I told her I loved her (I said this many times to her) but, on this particular occasion she leaned her head towards mine and our foreheads rested on one another’s for a few moments and we held hands…She squeezed my hand and I could feel her there completely. It only lasted a few seconds and then she was gone again.

When I was a child I was afraid of her. She was not an Aunt that I felt close to or that cuddled me. As my cousin, Phyllis, tells me, she can be quite bold…she wore the pants in the family.

The day I was to leave I watched as Uncle Norman prepared his usual breakfast for her. Scrambled eggs, bacon baked in the over and instead of cheese toast I baked biscuits for the honey I’d brought them from our bee hive. Uncle Norman had to leave for work but went in and made sure Mary had her breakfast first. He lovingly talked to her as he patiently fed her. She would look up at him and smile, chew her food, swallow and make gestures that she wanted more. She always ate well for Norman.

When Vivian arrived Uncle Norman left for work. I told him goodbye and promised to come back soon. I watched him scoot his way to his van and drive away. Inside, Vivian changed Aunt Mary, got her out of the bed and put her in her wheelchair. Vivian left to do something in the bathroom and I squatted down in front of Aunt Mary to keep her company while waiting to be moved to the living room.

Aunt Mary ever-so-gently touched my hands and I looked into her eyes and told her what a wonderful time I had being with her. This is when my breath was taken away by her.

She leaned towards me closely, looked dead into my eyes and said, “I want you to know…I have always loved you. When I was a little girl.” She then reached up and touched my cheek. Then we rested our foreheads against each others as we had come to do so often when she wanted to be close to me. I fought back the tears but they came and fell down my cheeks. I kissed her and told her that I always loved her, too. I think what she was trying to say is that she loved me ever since I was a little girl.

I am convinced that Aunt Mary knows who I am at moments and in that moment she knew me and wanted me to know how much she loves me. I told Vivian what Mary said to me and Vivian wasn’t surprised. Vivian knows that Mary comes and goes in and out of different realms of reality but that Mary is not completely lost to her brain disease. It seems like it so much of the time but for the times when she makes those moments of impossible connections, then it was time well spent with this remarkable woman who is my Aunt Mary.

My Uncle Norman gave me such a sweet compliment the night before I left. He told me that I remind him of his Mother in how I talk to Mary…soft, gentle, patient. You see, his Mother was Mamaw Vowell, the woman who taught me how to love…she was that way with me. I don’t come anywhere close to being like Uncle Norman’s Mother but him saying so means the world to me because I know he meant it.

It was the best four days I’ve had in quite some time and I look forward to seeing both of them again really, really soon.
_________________________
Dee
"They will be able to say that she stood in the storm and when the wind did not blow her away....and surely it has not.....she adjusted her sails" - Elizabeth Edwards

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#212563 - 05/04/11 01:07 PM Re: Generation Alzheimer's - Disease Defines Us [Re: Dee]
Mountain Ash Offline
Member

Registered: 12/30/05
Posts: 3023
Well Dee...this is a story worthy of sharing...Our Voices??
and it is BWS at its best.

I am humbled.

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#212565 - 05/04/11 02:27 PM Re: Generation Alzheimer's - Disease Defines Us [Re: Mountain Ash]
yonuh Offline
Member

Registered: 06/14/06
Posts: 2338
Loc: Arizona
Wow, Dee, what a touching story!
_________________________
Well-behaved women rarely make history. - Laurel Thatcher Ulrich
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#212566 - 05/04/11 02:47 PM Re: Generation Alzheimer's - Disease Defines Us [Re: Dee]
Anne Holmes Administrator Offline
Boomer in Chief

Registered: 03/11/10
Posts: 2682
Loc: Illinois
Dee thanks for sharing your Aunt Mary story with us here. I am in awe of you, as I don't know how I would react in your situation.

My step-father is exhibiting the early stages of some sort of dementia, and I know it it breaking my mother's heart.

He no longer smiles or tells jokes, and he has lost his ability to show her love or care. As an example, while she was in the hospital having her knee replaced, he cleaned out his recently deceased father's apartment, and came home with all that wasn't otherwise disposed of and dumped it on her bed.

Which meant that when she first came home she couldn't rest until she had found a new place for all the "stuff." He didn't help her with this, he'd gone off to run errands. Some might wonder if he should still be driving, and I think his driving days are numbered. He can no longer parallel park, and my mother says there are several dents in the front of the car that weren't there before she went for her surgery.

My brother spent a few days with them prior to her surgery, and he tells me that like your Aunt Mary, our step-father has moments when he is "here" and moments when he is not...

The other day my mother called to say that he wants to cancel their symphony tickets, despite the fact that he used to love to attend and lose himself in the music.

My mother is trying to get him an appointment with a neurologist, but he is resisting. I believe she will win that battle of wills and get him to the doctor, but no doubt the end result will be further loss for them.

His situation may not be Alzheimer's, but it is still tragically sad.

All of us kids live thousands of miles away from them, as they moved to Arizona 10 years ago to retire in the desert. We all have jobs, so we can't take off at a moment's notice to go live with them and help.

Thankfully they recently moved into a retirement community that offers "memory care" as an option should they need it. I don't know what we kids would do if she didn't have that sort of help available -- and yet we know that facilities like this are tremendously expensive. Thank God they have the funds to afford to live there...
_________________________
Boomer in Chief of Boomer Women Speak and the National Association of Baby Boomer Women.
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www.boomerlifestyle.com
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#212568 - 05/04/11 03:02 PM Re: Generation Alzheimer's - Disease Defines Us [Re: Anne Holmes]
Mountain Ash Offline
Member

Registered: 12/30/05
Posts: 3023
First step is to rule out depression. and urine infection.
blood tests and cognitive tests are advisable.Hope things work out Anne



Sounds as if Aunt Mary has the best possible care and attention
if only everyone could be nurtured like she is.

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#212604 - 05/04/11 07:02 PM Re: Generation Alzheimer's - Disease Defines Us [Re: Mountain Ash]
Dee Offline
Member

Registered: 06/27/05
Posts: 2559
Loc: Alabama
First, Anne, I am so sorry to hear about your Father. I think if this were my Father I would make sure he has a full physical. There seems to be a difference between Dimentia and Alzheimer. And there are different stages. My Aunt takes medications which keep her from being constantly on the go...it's helping her rest more and not wearing her out.
Your dad sounds like something for certain isn't right and I hope your Mom gets him to someone who can figure out what's going on.
Aunt Mary's daughter is moving from Colorado back to Montgomery in a few months so she can help her dad with her mom. Uncle Norman is 86 (soon to be 87) and watching him struggle with her (lifting and trying to get her to understand he's changing her diaper, changing her clothes, etc.)...he shouldn't be doing this alone but from 8p.m to 10 a.m. he has her to himself and it's such a strain.
The family is giving Uncle Norman a birthday party for him and members of the family he hasn't seen in years will hopefully be there. Part of my contribution is composing a video of their relationship. Their song is "Always" sung by Frank Sinatra and I've chosen another song that shows his unyielding support for the love of his life. I'm incorporating photos from when they were teenagers, wedding, anniversaries, and throughout their lives and ending with videos I've taken of him helping her with the alzheimer's. My Aunt won't be able to understand it when it's shown (and she won't get to be at the party), but maybe...just maybe...she will remember only for a moment a photo that comes within view. That's my prayer anyway.
Anne...keep us posted on your Father's situation...sending you all hugs, love and prayers.
_________________________
Dee
"They will be able to say that she stood in the storm and when the wind did not blow her away....and surely it has not.....she adjusted her sails" - Elizabeth Edwards

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#212605 - 05/04/11 07:04 PM Re: Generation Alzheimer's - Disease Defines Us [Re: Dee]
Dee Offline
Member

Registered: 06/27/05
Posts: 2559
Loc: Alabama
Mountain Ash...Yonuh...thank you also for your words of kindness.
_________________________
Dee
"They will be able to say that she stood in the storm and when the wind did not blow her away....and surely it has not.....she adjusted her sails" - Elizabeth Edwards

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#212610 - 05/04/11 11:49 PM Re: Generation Alzheimer's - Disease Defines Us [Re: Dee]
Anne Holmes Administrator Offline
Boomer in Chief

Registered: 03/11/10
Posts: 2682
Loc: Illinois
Mountain Ash, Dee, thanks for your words of support and advice.

To clarify a bit, it is my STEP-father my mother is dealing with, not my father. Thankfully -- in case dementia runs in families -- my father is mentally alert, healthy and going strong at 81.

To explain more about my father -- he has been building a 20-foot sailboat in his garage for the past couple of years, still does some consulting (he is an engineer)and is an emeritus professor of engineering who has run a successful consulting engineering firm for close to 50 years, now. He walks several miles a day, and he lives alone, but in a community where he has good friends who all look out for each other.

My step-father is an equally wonderful man, a retired shop teacher who teaches Sunday school at his church, and loves to garden. He has something called REM sleep disorder, which manifests in some ways similar to Parkinson's Disease.

This sleep disorder is why they have resorted to sleeping separately. Part of the disorder means that he acts out his dreams. When my mother slept in the same bed with him, she was in danger of getting attacked if he had a bad dream and started acting it out.

I will suggest to my mother that she try to get my step-father in to the doctor for a regular physical to begin with...
_________________________
Boomer in Chief of Boomer Women Speak and the National Association of Baby Boomer Women.
www.nabbw.com
www.boomerwomenspeak.com
www.boomerlifestyle.com
www.boomerco.com

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