Heartbreak

Tonight I popped into Mom’s memory care unit much later than I usually do.  She struggles at night, and often complains about staff not helping her.  I walked into her room and found her trying to undress herself, crying.

I helped her get ready for bed and the whole time she pleaded for me to let her die- to let her stop all her meds and “get this over with”. 

She’s been pretty consistent with that plea every day when she gets to a point where she’s feeling miserable, which is when her meds wear off.

During the 40 minute drive home in the dark, I agonized once again, wondering if I’m doing any of the right things.  Her residence is much better than average; the caregivers are upbeat and generally helpful, though definitely not perfect.  I highly doubt that any residential setting will give her the kind of soulful and steady hand-holding she’s wanting and needing right now.  The only place I can do that is at home, by hiring caregivers to help out, and she would have many concerns and insecurities with that situation, as she did when we tried it and failed before.

The truth is, Mom won’t be happy anywhere, probably ever again, because no place is her home.  With that understanding, I do the best I can, with the knowledge I have, but sometimes it doesn’t seem like any kind of life to keep living, especially on the days I can’t take her out to do something she loves.

Tonight as I drove home, I was thinking about her begging me for the right to die.  The right to let nature take its course.  Her life has been mostly miserable for the last three years, with little to look forward to.  Some of the time I think that maybe new meds, more activities, and a better residential setting could maybe cure her heartbreak, or at least distract her into having a better time until she does eventually die.  And some of the time I wonder if the doctors and I are the fools- not letting her let go. 

It’s hard to let go and let her make such a decision when you know dementia is involved, there are medication issues, and you’re the sole family caregiver who would even venture to get involved in that area, so all the confusing and heartwrenching ethical pressure’s full force on you.

But I know my mom, and she discussed these issues when we were kids.  She never wanted to be a burden, never wanted any lifesaving measures, and she wanted to go when it was her time.  So how do I let Mom go when the doctors can always do more?  No matter if that more means disturbing side effects and losing her sense of selfhood.

These are the impossible questions, and I know I’m not alone here.

I just discovered this issue I’m struggling with that Mom has requested is termed “involuntary euthanasia.”  It differs significantly from voluntary euthanasia, which is incredibly controversial. If you’re religious, involuntary euthanasia is a fancy way of saying to “let go and let God decide“.  If you’re agnostic (like Mom) or an atheist, it simply means doing it the old fashioned way and using nothing modern or fancy to delay death.  It’s something I wish we talked about more in our culture, in the doctor’s office, and when we write our wills. 

Fortunuately, Mom was very clear about her DNR order in writing on her will, and also specified no tube feeding, etc., but such documents don’t address how we can act when our loved one feels ready to die intentionally, by refusing meds or further treatment, in a state that could be considered “out of one’s right mind.”

For now, all I know to do is to keep gathering information from support groups, doctors, therapists, and Mom herself, and keep advocationg as helpfully as I can, plodding on with my broken heart, right along with her.

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4 Responses to Heartbreak

  1. Tisha says:

    Oh, Margaret…my heart goes out to you; such a heart-breaking thing to have to struggle with. I can’t even imagine what I’d do in your situation. I suppose I’d do what my mother always told me when I was younger – which was when in doubt, do nothing. So I think you’re doing the very best thing right now, expressing your grief and keeping an open dialogue going with doctors, support groups and your mom. It’s not much, but please know that you are in my thoughts and prayers.

    • Thanks so much, Tisha. Really appreciate your words, thoughts, and prayers. I belong to a few wonderful online caregiver support groups, and they had the great idea to contact hospice about these issues. Something completely obvious that hadn’t crossed my mind yet- hospice people are the pros at these issues.

      I also love your mother’s unique and so wise advice!

      Take care!
      (for any fellow blog-writers reading this, Tisha is an inspirational blogger who has a great site with lots of ideas for working from home online, and business/networking tips in general, especially for Moms.)

  2. Judi says:

    Meg-
    I found your blog today from a comment you made on our blog-Inside Aging Parent Care.

    It hurts to hear your parent tell you that they just want to die, especially when you know their wishes as plainly as you do. It is a natural thing for us to want to fight it with all our might. To be alone as a caregiver is such a difficult place to be. Most times, it seems that there is no winning, the best we can do is to help our parents leave this life with dignity, knowing that they are loved.

    When we were struggling with these same doubts and moral issues while caring for out parents we turned to the local Palliative Care professionals to help us both address our parent’s level of care need, making them more comfortable and ease their fears-and to help us as caregivers to sort out the difficult decisions about their care.

    Palliative Care is similar to Hospice but differs in that it is available to people at the onset on illness and not a place to turn at the end of life. They focus on the quality of life, pain and symptom management and coordination of care. It can take place at the same time as other curative care. At the very least if provides it provides emotional support for the caregivers and families of the care recipient.

    • That is fantastic to know, Judi. Thanks so much for taking the time to write. I hadn’t known about that service and am looking forward to researching it and seeing what the options are in our region. I’m assuming that health insurance that’s more comprehensive may cover it, and if not, that Medicare may help? What was your experience with paying for it?

      Thanks again,
      Meg

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