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.