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Spouse or Partner Caregiver Forum
Stereotypes and Political Inaction about Alzheimer’s/Dementia
When I started taking over household duties and gradually became DW’s caregiver after we had moved to an “active” retirement community, she could still exchange pleasantries and stock responses with neighbors as we went on walks or, on occasion, went to a social get-togethers. She was not able to engage in normal give-and-take conversation in her early stages of dementia. When the inevitable “friendly” interrogations began, DW skillfully deferred to me, saying, “I’ll let him cover that. He’s better at details.” After my spiel, she would start interrogating THEM, peppering them with simple questions about where someone had lived, what they enjoyed doing, etc. She was truly masterful at deflecting. She relied on me to rescue her if she paused (her cue to me to pick up the train of thought), and we were pretty good at it. No one noticed that she never drove, and neighbors probabky assumed we were just rather private.
Flash forward 15 months, and her behavior had become more erratic and disturbing, including delusions, lashing out (at me), getting up to go to work (she was time-traveling), disorientation, etc, but she still was pleasant to neighbors as we passed them on walks with our dog. Her geriatrician mentioned that more and more care would be inevitable, and I knew that I should start letting a few neighbors know about her dementia if something seemed “off” to them or she started wandering late at night. We had started to decline more and more social invitations, and it was time to share with them. Without exception, the handful of neighbors I confided in said, “I never would have known. She seems so healthy and friendly.” Then it dawned on me that they equated Alzheimer’s/dementia with the stereotypical image of someone with a vacant look, completely dependent on help, delirious, and incoherent.
After talking with a few of these uninitiated folks, they invariably said they didn’t know much about Alzheimer’s except for the ads about fundraising. I’ve realized that very few had any idea about the various stages of dementia. The most common question was, “Does she still know you?” That seemed to be the “go to” question from neighbors who didn’t know what to say to me—perhaps something they feared. I honestly did not realize there was still such ignorance about this disease.
So here are some key questions: Do you think my experience is unusual, and are the stereotypes about Alzheimer’s still common even among aging Baby Boomers?” Are the upbeat ads showing a cheering public rooting for a cure actually doing a disservice by putting such a positive spin on the future? Hope is great, but how realistic should public service ads be about the ravages of this disease to wake up the public—like the graphic ads showing the results of cancerous infections from tobacco smoking. Maybe it’s just easier to be in denial, especially since the costs (emotional, physical, and financial) a caregiver faces are horrendous.
Everyone on this board knows the truth—are we all venting in a vacuum? Thanks for any insights, ideas, or strategies to alert political leaders to care! You are all on the front lines, and your advice should matter. (It would be great to hear this subject addressed at the Dem. presidential candidate debate tomorrow evening.) You are the best—you lead by your honesty and your actsif kindness every day!!
Yes, this is a vacuum. No, nobody knows or cares about dementia until it invades their life, including whether a cure will be found. We know it won’t.
Politicians don’t care. Researchers only care about getting more money to throw down the black hole of amyloid plaque studies that go nowhere.
We suffer until our LO dies and then much of the time another LO presents with dementia and it’s time to get on the hamster wheel again. Or the stress gives us some disease, sometimes both.
I’ve had a long day.. but I’m pretty sure I get your 1000x. Most people think an Alzheimer’s patient is drooling in a wheelchair and does not “know you” or anybody else. They see no in-between total capability and total ...vegetable? Comatose? Out of it?
It matters when it goes to expectations—what people think the PWD can do ornsaymor reapondmto— and support for the caregiver. Because my DH “looked good”and could smile and nod (that works for about 90% of casual conversation) nobody could think there was anything wrong with him—including his family and PCP, who had to be strongly persuaded to ok the tests and scans that showed much of DH brain was gone.
Don’t get me started, it’s been a long 24 hours.
And yes, as far as politics goes, for sure, yes we are venting in a vacuum.
Somebody here recently said we have to let them (politicians) know about this. I worked in government. They absolutely know. They just don’t care, it has not affected enough of them yet—and may never, given their care plans and connections.
Are we in a vacuum? Sort of but if so who has created the vacuum?
I believe that AD as well as the other dementias is often kept too private. People know about Parkinson's, diabetes, cancer, heart disease etc because they know people who have those diseases. Conversations about those illnesses comes easily.
Everyday day someone asks should I tell others that my loved one has AD? In some instances this information is best withheld for a while but overall why keep it a secret? Why not acclimate others to what the disease looks like when it becomes relevant? And why not educate others that there is a beginning of the disease as well as an end? Why not take the opportunity?
The caveat would be to never do or say anything that would hurt our loved one.
Josh, IMHO you are spot on!
I don't remember what the dollar amount was, but congress did appropriate money for alz. Probably not much more than pennies in the grand scheme of things. Politicians now think they did their job. Don't bother them again for a while. They have other things on their minds.
The general population on alz/dementia? In a nutshell -
Dementia = forgetfulness
Alz = death
No reason to know any more than that.
I am a 67-yr-old Boomer, and am "fortunate" ( not a good choice of words) that most people in my closer circles are either right here in the trenches or recently have been. Those who are not are very good listeners. So, "fortunate", you know.
But I knew NOTHING about dementia before Mom. MIL had the resources to stay at her home with excellent care (and three daughters plus me, hubby, and other three hubbies as needed) until her last breath. She had serious forgetfulness. She might have declined further had she been moved from pillar to post as Mom has. Those multiple daughters, all retired (unlike DH and me), really make life easier. Not to mention resources.
So I thought I knew a whole lot after she passed. HA! Mom'sMC shows the entire range of dementia-driven behaviors and conditions. Within, of course, the confines of what behavior issues MC can allow. My reading on here has added many more layersof knowledge to my personal experience.
I had no idea about Alz until it happened to us. I'm ten times smarter about it now than I was when we started this journey and I am still BAFFLED by it. Its chaotic, unpredictable and exhausting.
I feel so spent, I don't have sufficient energy left to educate the people who may be remotely interested in this disease.
started to show signs of memory loss in 2006. At that time little did I know
what I was in for. I hide it from family & friends for 6 years covering up
her mistakes and other things that she would do. In 2012 I finally told my
family, her family and close friends what was going on with her, they basically
all said the same thing we thought that things weren’t quite right but we
didn’t know what the problem was. Why
I kept it a secret I’m not sure, but all caregivers do it. I think it has
something to do with the fact that we want to protect them as much as possible
and not embarrass them but now that I look back on it, I realize it would’ve
been better off to just let everybody know right up front. The sad part about
this is that your family and friends desert you and stay away
they don’t know what to say or how to handle things. Part of it is like Army-vet 60 said it’s too painful seeing your love one as they were.
They can’t get past remembering the fun things you did that no longer are
possible. They replace you with new friends and never really come back.
"So the main question I have for all of you is what will you all do about it"
Most of us here know that Michael does a lot. Way more that most us are going to do. My husband has died which frees up my time to be a more active advocate but I always had the time to write a letter but was lax in doing that.
I do it now believing that it counts....some do not agree but what if everyone who read here wrote one letter that contained just one fact that would hit home with a legislator.
What if...think what Nancy Brinker did in the name of her sister, Susan Koman. Nancy was one person....how many are we?
You could start with this if you can afford it. You can go to your government
officials with the knowledge gained on what to do and say. I will definitely be there for the whole time.
Here is on easy step.
I worked in a psychiatric hospital as a law student. DW was a physician. I published extensively on carbon monoxide and worked on traumatic brain injury. My mother had and died of vascular dementia. So I SHOULD have been as alert as any lay person could be. Was I? NO . In the early stages all I knew was that my driven, autonomous professional wife all of a sudden wanted to be with me a lot more than before. She was 58, just post menopausal and i reveled in her affection and attention. Life was goooood. My daughters picked it up, not me. She was uninterested in the Mother of the bride role for DD#2. etc.
When in Sept 2010 she could not add a column of numbers I almost died right there and then. I knew exactly what it meant. Even so I grasped at straws for two years like anyone would. No one wants to believe it has happened to them .
Thanks, Michael I submitted it as well.
I am one caregiver who doesn't hide the fact that my husband has AD. I don't feel that it's an embarrassment at all. It's a disease.
Yes, it's true that unless you are directly affected by Alzheimer's/Dementia, you really have no idea what it's about. When my Mom was diagnosed, I actually had co-workers and friends tell me that I was really lucky, since I was a nurse and my Mom had money for care (they presumed that I knew everything about Alzheimer's and that just because others were hands-on caregivers, I had it made in the shade).
I had no desire to take over her entire life and finances, managing caregivers and figuring out where she had stashed her money so that I could funnel it correctly to pay for her care. I felt so awfully lonely and burdened; this message board was one of my only places I could go to to ask questions of those who understood. Nobody wants to hear about the reality of Alzheimer's; what it's really like when your own Mother drops her pants and relieves herself in your backyard. What it's like when she used to celebrate your birthday for the whole month, and then she can't even use a crayon at the activity table, much less know it's your birthday. Every visit was a heartbreak, seriously. The reality of dealing with this disease should be promoted, instead of the images and advertisements of cheering and delight.
In the Memory Care house my Mom lived, there was only one other family group besides myself that would visit their loved one on a regular basis; there were eight residents, and I only met a few other family members over the course of the entire three years. Five of the eight residents there had no one come and visit. Every three or four months, a resident would pass away and be replaced with another, and I didn't visit as often as I should have, but I know I went more often than most, because it's just so depressing and uncomfortable. Again, the reality of Alzheimer's should be promoted, instead of the false gaiety and joy in the images put forth by the organization. A more serious / grown up image of the organization would be more appropriate in my opinion.
I just don’t get the stigma thing, although I know it exists. It’s like any other deadly or debilitating disease. It happens. It should not be shameful. Exposure should help with that.
I told any and everyone I thought would be interested or care—otherwise, his obviously odd behavior led some to wonder if he had a drinking or drug problem. (And lord knows what else that people did not tell me).
Better to get the truth out than to have wild dramatic speculation. DH was somewhat high profile in the community, so he normally saw a lot of people.
And still, many couldn’t believe he could have Alzheimer’s and walk around and look good (I made him bathe, helped him dress, etc.). He could smile when seeing someone. He’d say very little, but I learned most people were ok with that. No real conversation always needed.
As others have mentioned, many if not most friends disappeared. I chalk that up to the fact that we no longer can do what we used to, and they still can. They’re carrying on normal life, we’re not. Even with sick people, they usually have the expectation or hope of progress or improvement. Not with Alzheimer’s.
I believe the shut-outs aren’t because of any stigma, it’s more that other people are living their happy dream retirement, and Alzheimer’s is not part of that for most people, still. The numbers are big, and will grow, but it’s still not most people.
The AIDS/HIV community really did/does a better "job" of not hiding the reality and getting the facts out.
Friend of a friend was an early patient - they had to wear full bunny suits to visit everything was whispers but the community quickly then got loud and got the word out and didn't hide the medical issues.
We learned about the thrush, and skin issues etc. Scary and honest.
Alz - still the public face is movies with top flight actresses a bit off their prime and happy faces in cashmere sweaters.
Which explains the shock you read about in these Boards when a PWD is moved into a family home and the big wake up happens with hygiene, aggression- verbal, physical, toilet and sleep issues.
It's not just doing Mom's laundry and driving her to get her hair done. It's like a 1980's metaphor - you bring a cute 5 pound pot belly pig home but it turns into a 150 pounder that takes over the house. The disease is the pig.