The Meaning of Life in Dementialand

Today we are talking about the meaning of life. I’m going to tell you why we are all here. Hold on to your hats…this is gonna be life-changing, friends.

Just kidding. (Keep in mind this is from the same woman who last week completely skipped #3 on a list of 10 things care partners need to know. I don’t know the meaning of life; I can’t even count to 10.) 

I consider myself more practical than deep. I’m not a pastor and I’ve only taken one philosophy class—and that philosophy class wasn’t my favorite class of my undergraduate career. In fact, I took it only because my boyfriend was taking it.

But let me start with this…

I was reading a story online a few weeks that gave me pause. A woman was told in the middle of her pregnancy that her child, according to the doctor, had “no chance at a meaningful life.” She and her husband had to make some difficult decisions. To be honest, I don’t remember what they decided and I can’t recall the outcome of the pregnancy.

What I do remember is that I stopped for a moment at “a meaningful life” to contemplate what that meant. Could someone live for only 30 minutes and have a meaningful life? Could someone be on a ventilator and have a meaningful life? Could someone without brain development have a meaningful life?

I am not proposing an answer to those questions. I get enough emails with negative comments about my blog….I’m not planning to venture to discuss a topic that forays into the pro-life/pro-choice debate.

But what is a meaningful life and what qualifies this doctor to answer that question?

Could the parents perceive a meaningful life when the doctor doesn’t see it?

Is what qualifies as a meaningful life subjective? Or individual to each person? I mean, there’s no rubric for whether or not someone is going to live or is living a meaningful life.

This doesn’t just apply to pregnancy, of course.

A woman I once met at a speaking engagement had a sister, whom I will call Elizabeth. Elizabeth was a career-oriented lawyer who had never married (or even had a romantic relationship) or had children (or had any interest in her nieces and nephews). She was independent, educated, wealthy, and a pretty big deal in the city in which she lived.

Elizabeth watched her mother decline and pass away from younger-onset Alzheimer’s and frequently made comments like “I’d rather be dead than live in a nursing home” and “Please shoot me if I get Alzheimer’s like her.”

This frustrated her sister, who interpreted these comments as “Mom is better off dead” and “I’d rather be dead than be like Mom is now.”

As luck (or genetics) would have it, Elizabeth was diagnosed with younger-onset Alzheimer’s. She retired from her legal career earlier than planned and spoke pessimistically of her future.

“I am not going to be one of those aimless idiots wandering around the nursing home with no purpose,” she’d said. “I’ll kill myself before that.”

As it turns out, Elizabeth’s Alzheimer’s progressed quickly and her sister made a decision that she could no longer live alone. Elizabeth and her family arrived at the nursing home with a few suitcases and a recliner. Elizabeth seemed sad but resigned to her new living situation.

But a funny thing happened.

Although she dreaded becoming someone who was purposeless, Elizabeth’s sister saw her develop a sense of purpose like she never had before. Elizabeth might have lost her identity as a high-powered lawyer, but she gained an identity as what nursing home staff referred to as a “cheerleader.”

No matter who came in her room, Elizabeth told them that they were smart, good-looking, loveable, and many times “perfect.” Nursing home employees said that they argued about who got to work her wing because being around her was such a joy.

Elizabeth’s sister couldn’t have been more shocked. She had never received a compliment from Elizabeth in all her life, but now when she visited she was told her she was “a ray of sunshine” or a “gorgeous woman.” More than anything, the anxiety and stress that had plagued Elizabeth during her life seemed to melt away. She seemed happier than ever. Joyful as a child without a care in the world. Was this is the meaningless life she had feared?

Elizabeth had given her family strict instructions to pursue limited medical inventions when she no longer had quality of life. When they had to make decisions, they struggled. She developed an infection and needed IV antibiotics. At one point, she broke her hip. Then she started experiencing respiratory issues. And heart issues. They evaluated whether or not to put in a pacemaker.

Elizabeth was unaware of the details of her health challenges. She remained positive and upbeat….and, according to her family, happy. Her family was left to determine when they should seek care and when they should not.

While she had expected that dementia would lead her to a life without meaning, her family saw that her life had meaning in a way that it hadn’t before.

But who decides when life has meaning? And who decides when it no longer does? Or, perhaps, life always has meaning no matter the circumstances.

If pre-Alzheimer’s Elizabeth could take a sneak peak at post-Alzheimer’s Elizabeth, what would she think? Would she still want someone to shoot her? Or would she recognize that she was making a positive difference in the lives of family and nursing home staff? Is that enough to qualify life as meaningful?

Would Elizabeth think so?

 

 

16 Comments Add yours

  1. cacjjc says:

    Thanks Elaine for another poignant post. While not as direct as Elizabeth, my husband also indicated that he would not want to live with a diagnosis of dementia. But as he developed this disease, he never seemed to be aware of his diagnosis. He is now in the end stage (Fisher 7C). He is content, still seems to recognize me as someone whom he is fond of (not sure if he knows the context of husband/wife), and he is well cared for every day. And, he still brings such joy to me!. He smiles when he sees me and holds my hand. I’d like to think that he would understand that at this point, his loss is almost more than I can bear. I still need him, probably more than he needs me.

    The meaning of life…. All I know is that right now, at this point in time, we still provide each other with comfort and love. So grateful that I still have him. And I like to think that he knows that his love and presence in my life is a gift that he gives me every day.

    Liked by 1 person

    1. judithclarkewrites says:

      while my husband isn’t end stage, I relate to your feelings. In many ways, we have a better relationship now than we did at the ‘end-stage’ of my being able to take care of him at home.

      Like

  2. Auntysocial says:

    Honestly I suspect pre-Alzheimer’s Elizabeth would still feel the same were she able to sneak a peek at her future self living with Alzheimer’s maybe the same way we all at some point feel certain we’ll never do this, that or the other.

    Would go a step further and say she would probably be mortified and not relate or have any inclination to want to reach that stage which is understandable.

    The whole issue of living wills and DNR’s and anything that includes advanced decisions gets murky because once someone’s health, medical or mental health deteriorates it’s then an issue because the person may have had different thoughts entirely to what they did at the time they made a living will or advanced decision.

    Same way Pre-Alzheimer’s Elizabeth would have probably stated in no uncertain terms she wanted shooting and felt the worst thing in the world would be to end up in a care home. Trouble is that she found an entirely different and enjoyable quality to her life, lives relatively happy, comfortably and by that point (at least here in the UK) she would be considered to lack the mental capacity to then overturn an earlier written instruction.

    We commonly look at someone else’s situation and feel sure we could never cope with life that way and even question whether it’s a life at all but at least from my own point of view, quality of life is measured on the simplest of things.

    To me it’s all about comfort, being able to enjoy a quality of life free from suffering, pain, distress, discomfort and anxiety and taking all / every step to make them comfortable and provide them with whatever care they need.

    Someone that is crippled with pain, constantly agitated, distressed and finds very little comfort or enjoyment from anything at all is suffering and lacks a decent quality of life.

    When someone’s quality of life deteriorates to the extent they find little or no enjoyment whatsoever, are suffering from pain, anxiety or are otherwise in distress and unable to do what they once loved brings further anxiety and distress we need to question how and what needs to be done in order to bring someone’s end of life as comfortable as we can.

    No easy answered nor will there ever be I guess but your post raises some great points and excellent questions.

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  3. Nora Gould says:

    FYI, the emailed version, mine anyway, is blank. Thanks. Nora

    On Mon, Apr 22, 2019 at 4:58 AM Welcome to Dementialand wrote:

    > Elaine M. Eshbaugh, PhD posted: “Today we are talking about the meaning of > life. I’m going to tell you why we are all here. Hold on to your hats…this > is gonna be life-changing, friends. Just kidding. (Keep in mind this is > from the same woman who last week completely skipped #3 on a list” >

    Like

  4. Really good food for thought, Elaine. Thanks.

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  5. Candace Kaine says:

    I look forward to your blog every Monday, Elaine. My mother died last September after living with dementia for about ten years (as near as we can pinpoint). While she was alive, your weekly observations provided useful information and a ray of hope that I was doing the “right” things when being with my mother. You help more than you know.

    Like

  6. ldmarasco says:

    Wow … thanks for letting us know about the white on white … this was my first email from you and I was about to unsubscribe. What good are blank emails … or was it me or my phone? The meaning of life was great … and taught me, don’t be so quick to judge … both in life and email! Thanks.Sent from my cell

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    1. I’m not quite sure what happened…but I’m sure it was user error! 🙂

      Like

  7. kluce99 says:

    “Or, perhaps, life always has meaning no matter the circumstances.” ❤️❤️❤️

    I love this story so much. Thank you, Elaine.

    Like

  8. Thank you for this. I have seen in others, and also from personal experience as the child of someone diagnosed with dementia, that we adapt as circumstances change, and often we find meaning and joy where we never thought we could.

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    1. Thank you for your feedback!

      Like

  9. tehachap says:

    I believe that we have to find our own idea of a meaningful life. It occurred to me that perhaps Elizabeth wasn’t really enjoying her life before dementia set in and released her from all the outer pressures that were inherent in her lifestyle. I like to believe she had found her ‘calling’ once she was free mentally (and emotionally). A nice story, and I feel for the family in having to decide on life-extending care for her.

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    1. Agree–we must find our idea of a meaningful life, and I feel like that’s dynamic depending on where we are in life at the time.

      Liked by 1 person

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