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.
Your mom is faced with excruciating pain and suffering and you are —- complaining?
This situation is short term and you have the potential to destroy your relationships with other family members.
1. Be present or personally hire someone to take your shifts.
2. You were not designated POA. So stay in your lane. Listen and support (to all) should be your focus.
3. Remember that when you are present, you are also there to help your other grieving relatives, not just your mom.
4. Because your mother is dying, you should expect that it would be unlikely for her mind to stay intact. They doesn’t mean you should no longer pay attention to her wishes. She already made her wishes clear while she had capacity.
You write that your mom is fooling everyone by living.
You are not fooling anyone.
I don't see any occasion for a personal attack on the OP.
Thank you for the update. We are all with you in spirit and it’s good to hear that even though today was tough, there were some bright spots. So glad to hear more help has arrived. It sounds like your dad has even had a bit of a break through. I’m sure this is all very hard on him as well as the extended family.
With an awareness of your moms dementia, it will be a bit easier to deal with her comments. I am so glad she is not in great pain. My aunt who is late stage Parkinson’s has had blisters as well and hers were not painful. It sounds painful.
I looked up your hospice and I see it is a nonprofit in Indiana and Kentucky and has good reviews.
I hope the reinforcements give you all a chance to get more rest.
Use this forum to vent anytime you want. What you are doing is hard under any circumstances. We are here for you.
I read this thread over and over. So many different perspectives, from people with vastly more experience and skills. I thought there would be a “right” path that I just wasn’t seeing for some reason. But there isn’t any one right path, is there? And guessing the right path isn’t the hardest part. It’s shaking the feeling that no matter what I do, it won’t be right, or it won’t be enough, or it won’t be good enough. I feel better equipped to do the work now, and not as anxious. I’m sure I will make mistakes and guess wrong and say things wrong, but I hope I will forgive myself and try again. Thank you.