Another personal loss to AD

Newcomer introductions, personal anecdotes, caregiver issues, lab results, and n=1 experimentation.
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Brian4
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Another personal loss to AD

Postby Brian4 » Wed Mar 28, 2018 12:48 pm

My mother lost her baby sister this morning to Alzheimer's. I'm not sure why I'm writing. The whole thing is just incredibly sad, and frustrating, given that it's hard not to think that, maybe – maybe – something could have been done, a while back at least, and wondering whether I should have pushed harder to encourage lifestyle and dietary changes. The choices faced by caregivers (as a nephew I was not really part of the caregiver team) is such a delicate matter that I always felt that "pushing", in any way, is the last thing I should do. And when the patient herself repeats, every time one talks to her, "I just want to die", one gets a bit paralyzed. And then, when the disease has progressed to a fairly advanced stage, it really is more or less too late (at least with today's treatment options).

Anyway, I'm going to try to keep motivated to move the research forward, and, more immediately, to spread the word about what likely can be done now to keep people well (at least those who are not yet very far gone), and that involves, perhaps most importantly of all, spreading the word about the existence of this group. Thanks to everyone who's been advancing our mission here.

Brian

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CarrieS
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Re: Another personal loss to AD

Postby CarrieS » Wed Mar 28, 2018 1:02 pm

I am so sorry for your and your family's loss Brian. Sending a warm virtual hug your way! I feel your frustration and admire you for your resolve to stay motivated to keep moving the research forward. It really does take a village. Getting the word out about what we can do now is a great way to honor your Aunt.
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Re: Another personal loss to AD

Postby Searcher » Wed Mar 28, 2018 1:10 pm

So sorry to hear of your loss, Brian. What a caring and compassionate person you are!

The biggest hurdle in people adopting healthier practices can be a loss of the will to live. Sometimes this happens surprisingly early in life.

Warm wishes.

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Re: Another personal loss to AD

Postby Starfish77 » Wed Mar 28, 2018 2:14 pm

Brian, I am sorry for the loss of your aunt. Even when we have ideas that might be beneficial to improving a family members health, we cannot necessarily get the family caregivers to accept our suggestions. Keeping harmony in the family at such a difficult time may be the best choice possible at that time. I'm sure your love and concern was of benefit to your family. Your are honoring the memory of your aunt when you spred information about prevention to others who might be able to benefit from what you have learned. Our thoughts are with you.
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slacker
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Re: Another personal loss to AD

Postby slacker » Wed Mar 28, 2018 2:17 pm

Thinking of you and your family, Brian. It's hard to know what to do to help people given the situation, and easy to second guess ourselves. I suspect you did what you could, and are trying to look forward to help others and yourself.
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Re: Another personal loss to AD

Postby circular » Wed Mar 28, 2018 2:29 pm

(((Brian))) I was thinking the same as Carrie, that your aunt would be gratified to know about your commitment going forward. And like slacker said, I'm sure you did what you could. Sometimes it's even the caretaker herself who is hamstrung by the patient and other family members getting in the way of a more comprehensive intervention (waving hand). These things have a way of getting very complicated. Be especially kind to yourself ...
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Stavia
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Re: Another personal loss to AD

Postby Stavia » Wed Mar 28, 2018 4:08 pm

So sorry Brian. Sending love.

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Julie G
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Re: Another personal loss to AD

Postby Julie G » Wed Mar 28, 2018 4:12 pm

So sorry, my friend. It both hurts and motivates to see this disease up close. Lots of love to you and your family as you grieve. -xo

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Re: Another personal loss to AD

Postby bwaters » Wed Mar 28, 2018 6:43 pm

So sorry for your loss. It was a year ago that I lost my mother. Her dementia was awful - she had to have arm and hand restraints to keep her from hurting herself. It was a nightmare for our family - my sister and grandkids did not want to visit because it was all too traumatic. My father did not provide the best care for her and resisted all my efforts to try to get her the care she needed until the last year when I had to place her in a dementia unit at a nursing home. This experience more than anything else has driven me to be very proactive about the prevention protocol after I received my genetic testing results which reflect all the health issues my mother had. My mother and I were very close and I am personally determined to honor her memory by taking care of myself and advocating in any way I can to get our health and medical people to understand that there are prevention options for AD, dementia and MCI so that more people and families do not suffer. My sympathy to you and your family.

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SusanJ
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Re: Another personal loss to AD

Postby SusanJ » Wed Mar 28, 2018 8:03 pm

Bri, so sorry to see this. It is so painful to see someone we love slowly slip away and be unable to change the outcome. Sending a hug, some prayers and support for the coming days.


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