Mom (95) on Hospice care at home for almost ten months. Her oncologist said no more treatment possible. She hasn’t been out of bed for six months. Can’t sit up. Can’t use the toilet. Catheter and pads on the bed. Can wiggle her feet a bit and usually feed herself with right forearm. So bloated with fluid - almost 200 pounds -that one person can’t change her pads and clean her. Skin covered with water blisters that rupture and leak. Two deeppressure ulcers that aren’t going to heal, one started bleeding. Always short of breath. Doesn’t want to sleep at night. Keeps saying she wants to die. Dad wants us to care for her at home until she dies. Three sisters take turns staying for 48 to 72 hour shifts, with one person having to come in to help with toileting.
It seems we are just prolonging suffering with diuretics and low doses of opioids. Dad keeps the TV on at a very loud volume all the time, so no intimate conversations with mom. I think the bedsores and recurrent UTIs seem proof we can’t care for her well enough on our own. She doesn’t want to go inpatient or to NH. Hosparus can’t even find a respite bed until a month from now. POA sis doesn’t think NH staff will be careful enough with her fragile skin and bed changes and wants to keep doing this forever.
If I stop taking a shift, it puts a much worse burden on the sisters. If I keep taking a shift, it enables this lingering death to continue. She keeps rallying and maybe will hang on for months. I don’t want to do it any more. I’m starting to speak up that I don’t want to do this much longer. The others believe surely she will die soon but she keeps fooling us all. I don’t know what is the right thing to do for her.
How many siblings do you have? Do you have brothers? I sense there are more than the two that share caregiving duties with you.
One time you refused to do the free work that your parents expected and refused to pay anyone to do, because they wanted to leave money to the children. You need to do that again, and step out of the caregiving. I also read in a past post the way you were treated when you first started taking a place in the caregiving rota.
Consider this, also -- your mother is NOT getting proper care at home, if she has all the issues that you list above.
So Daddy wants his daughters to take care of their mother? Daddy doesn't get what he wants, just like YOU didn't get what YOU wanted when your parents refused to sign the paperwork for you to attend college on a full-ride scholarship to study physics.
This is a case where what is best for your mother is also best for YOU (and for your sisters, even if they don't realize it). Your better needs better physical care and YOU need better self-care.
Just curious...were you the only sib who was abused? And I'm especially curious if there are any brothers in the mix...if so, where are they in all of this?
Her needs are too much. If YOU can't continue with your share of care, then you should cut back to just what you can handle. You have realized your limit, you should make that known to your siblings and discuss how your share can be covered, either by the siblings doing more, or by hired help, or by moving your mother to a facility. You may be surprised that perhaps one or more sisters are also at their wit's end, too.
I am so sorry for this situation. 10 months is a very long time for such intense care for all of you. Tell your sister to hire help. You know your limitations. It will help all of you.
Sometimes we caregivers get stuck at a certain stage just like our loved one. Once she gets in more help, she will wonder why she didn’t do it sooner. I’m not sure that any level of care could keep the issues your mom is having away as it may be the nature of her disease. What does the hospice nurse say? I do know that my MIL died of cancer, had hospice and she did not suffer. She was not at home. I hope you are able to get better answers than mine. You sound very sane to me. This is so hard. Come here for support. We care.
And you're right, this could go on for some time yet. My husband was completely bedridden, and under hospice care in our home for the last 22 months of his life. I had to hire an aide to come in the morning to put him on the bedside commode so he could poop, and thankfully he had a supra pubic catheter, so that made my life much easier, but other than the hospice aides coming twice a week, and the nurse once a week to start(3 times later on)the rest of his care fell on me. My husband wanted to die at home, and I was glad that I was able to honor his wish, hard as it was.
You all have to do what is not only best for your mom, but what is best for you all as well. Might be time for family meeting. I wish you the very best.