Letter to Hospice: How not to overextend a waning life?

Lately the caregiving has been in a good groove.  My routine has become to spend a lot of time with Mom on the weekends.  During the week I’ve stopped making the long drive to visit.  I completely let go from Monday-Thursday and hope for the best.  I don’t even call because she can’t remember to hold the phone up to her ear, and she just gets agitated.
Things on the surface are more calm and steady than they ever have been so far, but like many caregivers, I still have nagging concerns about my role, the ethical decisions and boundaries, where to set my expectations, and where I might need to let go more.
Below is a copy of the email I just sent to Mom’s hospice social worker, which I decided to share here because sometimes I avoid posting on this blog because it’s too exhausting to try to put all the things that have been running through my head and my heart into words.  So I can either abandon the blog, write sporadically on the months I can summon eloquence, or just post whatever I can muster.  Today I opted for the latter.

Dear (hospice social worker name here),
Regarding your question about what I was wanting help with, I have some ethical questions about Mom’s Parkinson’s meds.  It seems that to some extent they’re extending her life.  She asked me many times in the past not to do that, and I also have my own concerns about her going on and on in her limited life state for more years than would occur without medical intervention.  
In the last couple years, Mom’s asked me repeatedly to stop all her meds to help her “move on”.  I felt that was too risky under the circumstances.  She was often agitated and her behavior and moods could be unpredictable.  I didn’t want her to end up back in the psychiatric hospital having to take even more drugs.
But now that she’s much more at peace both on the days she takes the meds and the days she doesn’t, I really don’t know what’s best for her in the long term.  I do realize that she drools a lot more, sleeps a ton, and rarely opens her eyes when she declines the meds, but I haven’t noticed any discomfort, other than mine, since it can be hard to witness.  I used to think she was near death on those non-responsive days, but now I’ve come to realize that it’s probably the temporary lack of dopamine.  Whether or not that means anything about a shorter life if it were to continue, I don’t know.  
I don’t feel like we need to change anything with her med routine at the moment.  I’m content to let her decide whether she takes her pills or not and not worry about it either way, as long as she seems reasonably peaceful.  But I do feel like it would be helpful to gather more information about these issues for the future.  I’d be interested in hearing what your doctor has to say and the experience of your staff in these kinds of situations with advanced Parkinson’s/Lewy Body Dementia.  
Thanks much.
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8 Responses to Letter to Hospice: How not to overextend a waning life?

  1. Hi again,
    I loved the fact that you shared your email. Yes, it can be so overwhelming to find time and energy to post when you’re in the middle of caregiving. It’s sometimes just as hard when you’re caregiving from a distance to know how much to call and what else to do.

    Good luck with your courageous blog and your caregiving journey.

  2. Megan says:

    Thanks Angela.
    Hope things are going as well as possible with your situation as well.

  3. wisteriasunshine says:

    Hello Meg,
    I, too, appreciate that you posted your email. We all go through a similar process with so many parts of this journey, it helps to see how others handle it. I am not in this place yet, but see it coming…ours is still a pretty insular experience. But I know I am going to have to interact with others on the care of my mom in the future, and think about it now, so…thank you.

    Glad for the peace you have more often at the moment,


  4. Joy says:

    This was a great post. I look forward to exploring your lovely blog further.

  5. momsbrain says:

    I’m curious about the response you got – I will keep reading to see if it’s there somewhere! My mom’s nursing home would definitely support a movement toward fewer meds. That is the philosophy at this particular place – to let the disease progress with as little medical intervention as possible. Thankfully it has worked for my mom. If she were agitated or sad, I would seek something for her mood. But I am totally in agreement that there is no reason to extend a life at this point; I do believe I would say the same thing if it were my own life in question.

  6. Megan says:

    Hi Emily,

    It turns out that lately my mother is refusing pills most days, so she took care of it. Hospice is really open to the letting go, but they reminded me that she may be more comfortable with the Parkinson’s meds, and then I reminded myself that she can’t relax her bladder to pee without them. So the fact that she’s now refusing them often has some downsides.

    She’s doing a lot of sleeping these days and I don’t see her personality come through much, except if I catch her during a little energy surge. I’d like to think she won’t have to go through another long winter like this (she’s always been depressed in winter, even as a younger person), but she’s tough and has already persisted against many odds, so as usual I’m constantly trying to let go of my expectations and fears and just deal with the reality that presents itself each day.

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