Tags
alzheimers, alzheimers caregivers, alzheimers funding, alzheimers research, brenda bouchard, candidates on alzheimers, dementia, hillary clinton, honoring ken, john kasich, rick santorum
New Hampshire resident, Brenda Bouchard, has been caring for her husband, who is living with younger onset Alzheimer’s, for 10 years. She also cares for her 89-year-old mother who has Alzheimer’s and lives with her.
With more on her plate than most of us can begin to imagine, Bouchard has set out to bring Alzheimer’s to the national stage. She recently attended three New Hampshire town hall meetings and posed a critical question to presidential candidates Santorum, Clinton, and Kasich. You can see their responses in the video clips below.
What will you do to make sure this devastating disease gets the attention it deserves?
This courageous, passionate caregiver is just getting started. Brenda explains, “What I am working to do is to put these questions before as many candidates as I can to help keep the national conversation going around Alzheimer’s. It’s non-partisan for me in terms Alzheimer’s.
“I’m singularly focused on getting the candidates to talk about Alzheimer’s so we can change the climate and culture around this disease and hopefully get enough people talking about it so we can demand more funding for research to find a cure!!! I plan to keep truckin’!!!”
Thank you for all you’re doing to shine the national spotlight on Alzheimer’s, Brenda!
We can help Brenda and the movement to #ENDALZ by sharing these videos with others to get the country talking. The squeaky wheel gets the grease and I’ve never met a group of people who are more passionate and committed than Alzheimer’s caregivers and advocates!
© Copyright 2015 All Rights Reserved The Long and Winding Road
The Long and Winding Road... 
Yes, finding a cure is important. And funding to find one is also important.
But I think what is even more important is finding a way for the people who must live with this disease now — both the people who have it and the people who care with the people who live with it — to do so in ways that allow them to engage life until the very end.
My experience is that we are sadly lacking in the skills required to live with Alzheimer’s disease / dementia in many fundamental ways. And this more than anything is what is causing tremendous stress on healthcare systems. If people were better equipped to be care partners, less money would have to be spent on medical interventions, including drugs, for a whole host of issues that result from a lack of understanding of how to deal with this disease in the moment.
Yes it is sad and tragic. But I strongly feel there’s no point in wallowing in the misery of that, and mourning the losses to the point where we are incapacitated. We need to learn to look at this disease and the people who have it in a different way. We need to integrate them into our communities in the same way that we’ve begun to integrate other people with other diseases into our communities.
So. Funding for a cure? Yes. But let’s not put all our limited eggs in one basket. We need more funding right now and in the immediate future to help people cope, and beyond that to live fulfilling lives with the disease on both sides of the care partnering coin.
In no way do I wish to denigrate this woman’s efforts, which I applaud. She is a true inspiration, and clearly it wonderful advocate as well as a pioneer.
However, in my opinion, finding a cure is secondary to finding ways to cope.
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PS I wrote my first reply before I watch the videos. I’m encouraged by the fact that two of the three candidates specifically mention caregiving. I thought Hillary Clinton gave the best answer.
I reiterate that I believe that more funding should be allocated to finding ways to help people live with the disease than to finding cures for the disease. I believe that funding invested in strategies to live well with the disease will generate more positive returns in the short and long-term than will the search for a cure.
That may be controversial, but it’s my opinion 🙂
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The only thing I would ask Brenda to add is that caregiving is bankrupting caregivers. There is the concern about the cost of Alzheimer’s to Medicare and Medicaid. Those of us providing the care do not have benefits, in most cases no payment, no health insurance, and are losing our homes and our careers. We are the future Medicaid recipients if something is not done about this.
I have gone through a court battle with my family to try to get payment for four years worth of free care to my mother with Alzheimer’s that has sufficient assets. However, POA sis wanted to consider free room and board as my payment. Initially, she made a statement that she was concerned about what would be left for her in the form of inheritance. And she spent my Mom’s money for her own representation,. That should be a crime! I think it should be considered financial exploitation! Her spending of my Mom’s money brought Mom two years closer to needing Medicaid herself. Thankfully, the court ordered that I will be paid for three years, and that I would not be charged room and board out of it. This has destroyed me financially, have not lost my home yet, but now need to find work.
One of the candidates did talk about the respect that family caregivers deserve. What would be helpful is if employers would recognize that caregiving is not sitting around eating bonbons and watching tv while mooching off of parents. It is the furthest thing from that. It is a 24/7 job that unless you do it, you will not understand.
Early in the care I completed my Master’s degree, funded with student loans, to improve my skill set, hoping to find employment when the time came for my mother to enter a facility. Now because of the caregiving I am having a hard time finding work! We will see.
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You are right , caregiving takes a big hole out of one, and can go on so long we are elderly ourselves when it ends…and no chance for return to career. The almost PTSD events some of us experience. I was caregiver for mom of 13 years.. the last 3 of it, in the nursing home. Yes, we have to care in the nursing homes as well… some of you know what I mean.. 1.5 hours to get dinner down them. fighting 10x as hard to get THEM to do something needed that I would just handle. All that is another level of stress.
Hillary had the most comprehensive answer and she got to the core of the issue that you talk about…
I was sole caregiver for 9.5 years, then she was in nursing home for 3.5 awful years…awful experience in many many ways…
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@Carol: would you please clarify what you mean by:
“Yes, we have to care in the nursing homes as well… some of you know what I mean.. 1.5 hours to get dinner down them. fighting 10x as hard to get THEM to do something needed that I would just handle. All that is another level of stress.”
Thanks, Susan
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Yes, I think I have some PTSD, but mine is caused by nasty siblings. The easy part was caring for my mom and her hubby.
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AmazingSusan, I think what Carol is saying is that when she took care of everything it was routine. When you hand over that care to someone else, and I have done it as well, it is hard to let go of the responsibility. We need to train others in what has worked for us. Then they find what worked for me, does not work for them, so stress is caused trying to come up with new things to tell them. We are still caregivers once they are in facilities, somebody needs to advocate for them, they certainly cannot do it themselves. It is an entirely different sort of care.
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@Carol: is that what you meant? Or are you and @Famitly caregiver one in the same person 🙂 ?
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No we are not the same person. I don’t talk to myself, at least not that often;-)
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Brenda Bouchard is my sister in law. I love and respect this woman for her dedication to getting the word out on AD. What you may not know is that her dear husband is the third of the three brothers in this generation of the Bouchard family to have AD. Two brothers have died from AD. The eldest was my husband, Robert, who died on Aug. 1, 2014. These brothers were briiliant men with amazingly successful careers. They were loving, dedicated, fun husbands and fathers. We also lost their mother to AD. Seeing the devastation AD caused our family I must say how proud we are of Brenda!! She even found time to contact me with solace on what she called Bob’s “Angelversary”.
Needless to say, we are concerned for our own children and grandchildren’s futures.
I hope more families will consider brain donations to any research facility seeking information on AD.
Sincerely,
Mary Bouchard
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Wow Mary. Love to your and your family ❤
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Thank you for commenting, Mary. I can’t imagine what your family has been through – my condolences on the loss of your husband. There are many cruel diseases, but in my mind none more cruel than this one. Blessings to you.
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