Supporting vs Helping

Recently, I joined a virtual support group for dementia caregivers on Facebook. I did this for a few reasons.

  • 1) An honest desire for support. While I do have a few friends and family members who will listen to me and offer a kind ear, it’s very different than talking with people going through their version of the same thing you are. Even though my eldest sister was our Mom’s caregiver for years, the last year or so of which was colored by her growing dementia, I feel as though I’m dredging up things she’s working to get past when I discuss it with her.
  • 2) A hope to be of service. While getting help is terrific, nothing is more fulfilling than actually being of help to someone in need.   In this group, I figured I would be able to reach out and touch lives with compassion and love.
  • 3) Lastly, I wanted to expose the group to the fact that a dementia or Alzheimer’s diagnosis is not the inarguable death sentence that many (most) doctors will tell you it is.   Jacquelynn is recovering from this diagnosis, and so can many of them, potentially.

The first two of these goals have been met and were almost instantly upon joining. This is an extremely compassionate and empathetic group, and everyone is always eager to offer love, advice, and prayers wherever needed.

However, I have been frankly shocked by the responses I’ve received upon mentioning the possibility of recovery. Yes, a couple of people have asked for details and links, but by and large, I’ve encountered everything from indifference to criticism and vitriol. I’ve had comments deleted and gotten “angry” emojis.

Why?

This experience brought to mind something that happened just after Jacquelynn and I returned from Savannah after our first appointment with Dr. Ross to get her started on the Bredesen Protocol. I have a close friend who is caregiver for her mother, also an Alzheimer’s patient, although much farther along than Jacquelynn was. When this friend saw the list of supplements we had been prescribed, the response was a disbelieving “THIS IS FOR ALZHEIMER’S?”, and I haven’t heard directly from them since, save in rare and curt response to something I post on Facebook.

At first, I thought perhaps I had said or done something wrong, but it occurred to me that it probably wasn’t me. While I don’t for one second think they or anyone else wish ill for Jacquelynn, I do think it possible that they reject the idea of recovery for several reasons.

One of those reasons may be guilt. Perhaps they feel they missed something and feel as though they’ve let down their loved one by not researching alternatives.

Another possibility is fear: I spoke to a dear friend recently whose friend has a mother recently diagnosed with dementia. The very concept of restricting her mother’s diet and working to help her is anathema to this woman. Her mom has a terrible sweet tooth, so restricting sugars is out of the question.   Out of whose question?   Are you truly so desperately afraid to upset your mother that you’d rather just let her wither and die, possibly over several years serving as her only caregiver and destroying your life as well, than to at least make an effort? Survival is work, for God’s sake, even for the healthiest among us.

Largely, though, I think it’s a result of an out-of-hand rejection of anything outside the medical mainstream. Their doctors have been telling them, and the media in all its myriad forms perpetuates it, that there is no treatment, no hope, and no future.   More money is spent each year on breast implants, one popular meme will tell you, than on Alzheimer’s research.   This mindset, fertilized by doctors and the useless monotasking medications they’re all so eager to prescribe, can only grow despair and hopelessness. It’s only crop is death, and we’re told only that “we’ll do everything we can for you until the end” because endings are so much easier to imagine than hope.

Doom-and-gloom is the fuel of desperation, and no hope ever grew from it.   I only wish to sow the seeds of hope, to enlighten people that there are alternatives to withering away despondently toward an inevitable and miserable end.

This is human existence, and not a single one of us is getting out of it alive. In the meantime, however, life is meant to be lived, and there IS hope for those with the courage to reach for it. PLEASE don’t reject hope out-of-hand. You haven’t failed your loved one, you’ve worked and sweated and sacrificed for them just as they have for you. Research.   Inquire. BEG for help.

I don’t consider myself or my dedication extraordinary. I’m a normal human desperate to save his wife, who is just as desperate to save herself. We’re a team, and we believe in our goal and its success. My purpose is not to elevate myself as some voice of authority, but merely to open eyes to the fact that there are alternatives, and Dr. Dale Bredesen has more time and commitment invested in this goal than any other single doctor on the planet, and the results he and his team are seeing are nothing short of miraculous. Eventually, mainstream medicine will be forced to accept and endorse his protocols, but can you afford to wait for that to happen? I know we couldn’t, and I’m damned glad we didn’t.

I thought long and hard about leaving the support group out of sheer frustration, but that would be quitting. As I said earlier, I’ve had a couple of requests for more information, and if that leads someone to seek help while it’s still possible than I’m elated to have served. So, I’ll be staying, learning, asking, and sharing in any way that service dictates.

I’ll be doing what little I may to save lives.

Please continue to follow and share these posts. Please do your part to help save lives that so many have already given up on.

5 thoughts on “Supporting vs Helping

  1. You hit a common wall, I had patients come into my clinic and with tears in their eyes they would proclaim ” I have X disease”. Being a loving and caring doctor I would say “I KNOW we can help you”. To this they would almost yell ” do not touch me”. People sometimes get lost in their pain, or get an odd satisfaction out of the “poor poor me I have X”. Plus you have to know that they are bombarded by people and snake oil salesmen who feed on their pain. You can not save anybody, they have to save themselves, you can only show them the path or the door. Take a big zen breath, love them and continue on your fight to save the one you love.

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  2. Your determination is amazing and I hope you can help as many as possible but in order for you to do that they need to want to be saved, have an open mind and a positive heart. It all starts from that end of the stick and I think some are just “happy” receiving the “poor you, you must be in such pain” face

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    • I almost didn’t “approve” this comment, but I realized that it was important to do so:
      While I cannot deny the possibility of some people enjoying the victim role, I want to emphasize that it was in no way my point to imply that such considerations may play a part in the decisions I was questioning. To be completely open, it did indeed occur to me as I was writing it, but I consciously chose not to include what may have been construed as an accusation or indictment in the article.
      I was also made aware very soon after I published this article that my perspective and experience are quite limited on this topic, and I simply wasn’t approaching the question with empathy toward people coming from a different point of view.
      My thinly veiled judgment of caretakers and relatives who don’t contest their loved one’s reluctance to submit to treatment was unfair and harsh. While my greatest desire (aside from saving my Jacquelynn, of course) is to help others find the help and health that can be theirs to claim, but I do not know their challenges and I do not walk in their shoes, so my remarks were cruel and unworthy.
      All of us contesting with this and similar situations face a terrifying challenge, and it is neither my intent nor my right to challenge anyone else’s choice of path. I merely wish to ensure that they have all the information available, especially when it isn’t necessarily information their medical professionals may provide them with.
      I apologize to any my choice of words may have hurt. Please know that such was never my intent, and I will try to better couch my thoughts in the future.

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      • I am not one to judge as I am not in anyone else’s shoes. I sorry if I seem like this. I only learned that not everyone is opened to new information and new ways of treatment and maybe I was judgmental without intention.

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