Mom (82) with mid stage dementia has been living in an ALF since May and had a stroke last Saturday evening. She initially lost the ability to move her left side that has slightly dissipated, but still can’t swallow. We met with the palliative nursing team yesterday and since she has a DNR in place they asked her if she wanted a feeding tube inserted and she declined so it was decided the next step was hospice. For anyone who may have been thru this with an aging terminal parent, do they stay 24/7 until she passes? Can family members/friends stay with her thru this horrible journey and when do they administer pain relief? I’m her medical POA and I know from many previous conversations… in her own words “I don’t want to live hooked up to a machine that just keeps me alive when I’m really not living” but this is still so heartbreaking.
My 86 year old mother passed on Dec 1, 2022, after having a stroke on Nov 28. She lived in Delaware and I live in California. She had a DNR in effect and did not want to be kept artificially alive. She lived alone, her choice, independently until May. She was hospitalized twice, once with Afib and CHF, and then again due to toxicity to one of the prescribed heart meds.
My mom had home care aids providing assistance and she had been having hospice care since mid October. She was transported to the ER after the stroke but due to the DNR was then taken to a hospice facility where she was kept comfortable and out of pain. The stroke affected her right side and she could not speak and was non-responsive afterwards. I video chatted with my mom 2-3 times a day and had talked with her that morning. I made arrangements to go see her the Saturday after the stroke but she passed on Thursday before I could get there. Her funeral was Dec 10. (I stayed with her for 6 weeks after the first hospitalization this spring and again for 2 1/2 weeks after the second one this fall.) The Delaware Hospice team took great care of my mom in their Milford, DE Center and she was not alone when she passed. My mom was so miserable the last month or so due to leaking legs caused by the CHF. She refused to take her meds, she developed a sore on her right heel, had pain in her left foot, couldn’t taste most food and at the end, couldn’t speak. As much as I miss her, I logically know she is better off and no longer suffering or “living” in a way that caused her so much misery. Had she lived a bit longer, I believe I could have been with her at the Delaware Hospice Center 24/7. I don’t know how other hospice operations do business but I found them to be the most kind, caring and compassionate people I’ve ever met. They were very supportive and could answer my questions…except for how long my mom might last.
it is difficult watching a loved one die when you can only stand by. I know … i had to watch my son die of aids and there was not one thing i could do to reverse his condition.
i find the thought be being hooked to a machine, not knowing how long it would be and would seem like forever, to be horrible beyond belief.
yes it’s scary. But it cant be helped. We’re going die one way or the
other so why not as comfortably as possible and hopefully with a loved one nearby.
the only thing i regret about my tattoo is that i didnt include “pain meds ok” but my paperwork has it so i guess if no cares about my tattoo it wont matter anyway.