Hospice and more ethical-emotional dilemmas

Mom has been with hospice a few months now.  I’d only heard the most fantastic things about them, so felt positive about this transition.  Mom qualified not because she was dying, but because her doctor knew we’d both reached our limit with trying to haul her to appointments, knew how hard life is for her all around, and knows she’s in the last, very nasty stage of Parkinson’s with Lewy Bodies, which unfortunately could last many more years.

I thoroughly enjoy my time with Mom, even when she’s vile to me, which has come back around lately, but I’d never try to extend her life at this point.  I like that hospice GETS that 100%, when much of the world cannot understand why you wouldn’t do everything you could to prolong a parent’s life, regardless of the situation.

This is how Mom’s been spending a big chunk of early spring:

The hospice experience so far has been a mixed blessing.  Mom’s team (nurse, social worker, CNA, volunteer, and pastor, who Mom promptly dismissed) is super young and not incredibly experienced, it seems.  I suspect they place the “greener” teams with the memory care residents where families are less present and demanding – I think it’s human nature that they tend to give up and show up much less at this final, frustrating and tedious stage of caregiving.

The first month of hospice was frustrating for me.  The team made a lot of suggestions that weren’t relevant, which there’s no way they could know- they didn’t know Mom yet or her history.  It felt like a lot of work to educate and “train” them about Mom, but they’re very nice and I feel grateful each week for their extra presence, vigilance, and ideas.  Mom despised the young pastor they sent to talk to her about her “spiritual needs”, and eventually “fired” him!!!  I had to intervene and tell him she meant it when she said that she was done with him when he kept coming back.  She has a thing about men she doesn’t know touching and hugging her, so he never got a second chance after that.  Probably good training for him!

The struggle I’m having recently is that Mom’s been refusing meds several times per week which causes her to fall into a more comatose kind of state.  She ceases to eat or drink much, and mostly sleeps, seeming as if she’s closer to dying.

As soon as she starts taking the meds again, her consciousness returns, as does her personality, alertness, and some of her physical skills.  I strongly suspect that Mom would die faster if she ditched the meds completely- maybe within a few months.  If she continues to take her dopamine drugs, (for Parkinson’s/Lewy Body Dementia) it seems she may go on living her frustrated and not so full life for several years or maybe more, gradually losing body functions, painfully aware of each decline.

I want and need to talk these issues over with Mom’s geriatric doctor, the one who signed her DNR order and understands such dilemmas very well.  I requested an appointment with him for this purpose through hospice, since I wanted them to be there too.  They accidentally scheduled the doctor to come see Mom instead, and without notifying or inviting me, which was incredibly frustrating, since I was the one who’d requested the meeting, AND since I’m Mom’s legal guardian and health care agent.

Anyhow, that’s why I still haven’t been able to sit down and hash out my insecurities about the med question with Mom’s team.  I want to follow Mom’s wishes as closely as possible, which in her words are summarized like this:  “When are you going to find Dr. Kevorkian for me?”

I also want to do the best I can to ensure her comfort and peace, without neglecting my own.  I’m not sure how comfortable I am (or will be in the future) about being the one to decide when it’s time to let go of the meds.   Since I have no idea what’s best, I’ve been letting Mom decide in her unpredictable way.  One day she refuses, another day she takes the pills.  It’s up and down, and therefor so is her functioning and her moods.

I’m pretty sure that she’s not getting much pleasure out of life, though I know she enjoys a couple of her staff, she likes our outings, enjoys eating her favorite foods when I bring them, anticipates watching 60 minutes and British comedies (as much as she can follow them), and seems to enjoy making sarcastic comments about her state of being and the facility she lives in.

I know that part of my fear about her prolonging her life with the medication has to do with my exhaustion, worries, and stress with the situation, and most of all the emotional agony.  It can seem pretty selfish, though maybe not unreasonably so.  I’m in my early 40’s and I fear that if my husband and I don’t start our path to parenthood soon, it just won’t happen. He doesn’t think it makes sense to head that direction when Mom needs so much.  Some days I think he’s right, and other days I fear life will speed by and Mom will outlive one or both of us.

For now, I have no answers, but as usual am groping along in the dark, trying to make some sense out of each day and hoping I’ll have the strength to make these big decisions when I need to.

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This entry was posted in caregiver stress, support, and respite, dementia, lewy body dementia, parkinson's and tagged , , . Bookmark the permalink.

6 Responses to Hospice and more ethical-emotional dilemmas

  1. Judy says:

    Megan, my heart hurts for you and your mother. I have no words of wisdom.
    Your lives are so intertwined but there will be a day when they will be pulled
    apart.. This will end. Keep doing what you can and know it won’t always be this
    way.

  2. Megan says:

    Thanks so much Judy. It’s good to hear from someone who’s been through the whole circle. You have perspective I can’t see yet.

  3. Megan says:

    This is an email I got from Melissa, who tried to comment on this post but had no luck getting it to submit via the reply form:

    On Sun, Mar 18, 2012 at 11:40 PM, Melissa C. wrote:

    Message: Hi Megan

    This is Melissa. I empathize with your situation, and understand how heart wrenching watching your mother die must be for you. I have one suggestion to humbly offer you.

    I recommend that you Google “Caring Advocates” which is a non-profit that promotes the concept of “natural dying or death”. This occurs by either your advanced directive stating that you want to refuse all food and hydration at a certain point of your demise, or in your case, you make the decision that you support your mother’s refusal of food and liquid. The site explains that this is a natural and peaceful way to die (as well as logical, especially when surrounded by the madness of our medical systems and values of keeping people alive against all odds or common sense).

    Food in our culture is LOVE. Therefore when we don’t try to give food, it means we must not love our loved one. Of course this doesn’t make sense, but it’s the emotional place where most of us operate. From your story it sounds like your mother is valiantly trying to choose a natural death, only to be “brought back”. My guess is that she knows how much you love her and she’s trying hard to please you, and do the best she can to stay around. At the same time she’s trying to leave this earth, when she refuses food and liquid.

    Part of our fear as caregivers goes back to the value of “food is love”, and we worry that our loved one will experience hunger or thirst. The site explains that typically your mother wouldn’t experience hunger, but could be uncomfortable without hydration. To overcome this discomfort, your mother would be palliatively sedated. to the point where she would simply be sleeping and so be unaware of her thirst. Once your mother has passed the point of discomfort, the sedation can be discontinued, and she would be alert again, so that you would have the opportunity to say goodbye.

    This is so sad, as it’s a no win for either of you, and it prolongs your grief and adds to your stress. For your sake, I hope you check out the Caring Advocates site, and watch videos 1 & 3, which will explain and demystify the notion of a natural death by withholding food and liquid.

    Also, an experienced hospice nurse should be able to explain this to you as well, and provide “guesstimates” of how long the process of your mother’s dying might take. It varies for everyone, depending on their overall health, weight, history of refusal of food, etc. But for myself, I found it very helpful to be given “guesstimates” as the not-knowing is just one more layer of stress and source of guilt.

    Megan, I absolutely know how difficult the decision to allow your mother to refuse nourishment could be for you, as I have had to face it with both my mother and brother. I was a hospice volunteer for years, and thought I would be prepared when one of my loved ones was in a situation such as your mother’s. Nothing prepared me. Nothing really helped. I just had to make decisions I didn’t know how to make. But someone along the line did help me by asking the question, “If this were your most loved pet, suffering in the same way, what would you do?” It’s been said many times that in our society we treat our animals and their deaths more humanely than we do our humans.

    At best, I hope I’ve given you a resource to look at and consider, and that you know that at least one person has suffered as you have. I send you love and light to help guide you in the decision that will bring you and your mother peace.

    Melissa

  4. Megan says:

    On Mar 19, 2012, at 7:09 AM, Megan wrote:

    Hi Melissa,
    I may have confused readers by my post. I actually don’t have a problem with Mom not eating or drinking, which is what happens on the days she doesn’t take her meds. On those days we sit and talk and I don’t suggest anything unless she asks for it. But when she sees me she tends to ask for food, because she’s used to me bringing along something for her to supplement the boring meals there.

    Hospice and I are completely in agreement on the “no food unless she asks for it” strategy, and I’m at peace with that. The part that’s hard is that every day her desires are completely different- it’s like a yo-yo life. She handles it better than I do. Sometimes it seems like it would be best if she just stopped eating completely and let herself die this beautiful spring, not having to go through another long winter. (She loathes winter and gets quite depressed.)

    I hope that makes more sense than my original post.
    Thanks so much for your listening and support.
    Megan

  5. momsbrain says:

    I wish I had words of wisdom. I have been saying in a sort of joking way at my support group that my mom appears to be on the path of living forever. She has declined quite a bit, but she has maintained energy and walking ability, and she can feed herself and talk. Meanwhile, her brain offers very little else. I took her off of Lipitor years ago, thinking it was a waste to control her cholesterol. Your mom’s pattern sounds complicated, but I’m glad you do have hospice support. One thing I like to say to caregivers (and to myself): your life, your happiness, your health – these things all matter just as much as your mom’s.
    Emily

  6. Megan says:

    Thanks Emily. Your last sentence is very wise, and it’s always good to hear that reminder. Sometimes I get it logically in my head, but in my heart, I never know exactly how or where to draw the lines. I guess it’s normal that it’s always somewhat of a struggle to know how much we can give and still stay sane, happy, and healthy ourselves- emotionally and otherwise. I keep trying to figure that out, and it’s always changing.

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