My mom is 88 with stomach cancer. Rather than put her through radiation which she did not want, with the support of her primary and gastro, I signed her into hospice care in my home. For 6 months now it has been a good program and it has been no burden to prepare her meals, although recently her nausea prevented her from drinking much or eating barely anything.. However things changed this morning when, besides looking like she was ready to die, dehydrated and frail, she had a fall going to the bathroom, and although she has wasted away to under 100 pounds, my husband and I had a hard time getting her up. After we finally managed, we helped her take 3 steps and her leg gave way and she was back on the floor. Hospice told us to call 911, they came and took her to ER for tests. No broken hip thank God.
1. After a few hours of IV fluid in ER, she looked like she was alive again. Color to her face, red lips, and talkative. (I am starting to have an issue, with the deprivation of IV fluid in hospice care. I feel like not providing it is not palliative!)
2. I dont know how we can get her to the bathroom. She is very weak. How do you help someone off the wheelchair and onto toilet? I work and this is all so new to me. Hospice isnt helpful in this. They only prescribe medications (which she is having a hard time with because if stomach cancer) and basically expect caretakers to be nurses, albeit with support.
She liked being in the hospital today. I think she feels more secure and comfortable knowing they can help her by IV, etc. Would a nursing home be like that?
You are asking about moving her to a nursing home or hospice facility and I think that is a valid option, they have the trained staff and equipment to help and in many ways they can provide a much better level of care than most of us untrained and unprepared caregivers could ever give. Talk to your hospice providers to figure out your next steps.
The same goes for how care of the elderly is portryed in general, with the elderly person always quietly sitting out on the front porch with a quilt around his/her legs, dozing in the sun for hours while the rest of the family lives their lives. One day they're discovered slumped over in that sunny chair on the porch, and that's it.
She will unlikely be able to process any foods given to her so it is just fluids through an IV. This is not enough to sustain her for very long.
You can ask Hospice for a Hoyer Lift. That will make getting her off the bed onto a commode possible and safe for you and her.
OR is it possible that you can not manage her level of care at home. If that is the case you can ask her to be sent, on Hospice, to a place that will better manage her care simply because they have more staff to help.
Medications can be given via patches and many are given via suppository ask your Hospice about this.
This is a decision your mom should make.
Go off Hospice and get IV fluids (she would probably not do well with tube feeding so all she would be getting is through IV's)
Continue Hospice and get comfort care.
In the meantime, you could definitely get your mom situated in a Skilled Nursing Facility for full time care during her end of life journey. That would make me feel more comfortable, if I were in your shoes, and I'm sure your mom would feel more comfy as well.
I know how hard this whole journey is; I went thru it twice with both of my parents; dad with a brain tumor and mom with heart failure & advanced dementia. Both had hospice care in Assisted Living/Memory Care and they both passed quite quickly which was a huge blessing for all concerned. I wish you peace and God's help in navigating this difficult time of life.
My LO was in hospice care for a year and a half, during the pandemic. She received palliative care for multiple large pressure sores, and the hands on care was meticulous.
Have you had a frank/friendly conversation with someone, one of the social service coordinators, perhaps, about your expectations regarding her care? Maybe to clear the air a bit about what they’re doing in relation to your expectations?
So after that, two points- first, your expectations for your own ability to provide full time hands on care may be dwindling as her needs increase, and she is literally TELLING you that she was more comfortable in a setting where she was receiving a higher level of care. No reflection (at all!), on YOU, just the way her situation has turned out.
Second, at least in our state, hospice programs work in hospital settings, in our situation seamlessly, and provide a smoother, more coordinated type of care than I’d ever have been able to provide at home for my LO.
Some of your comments about hospice may be reflecting your frustration at no longer being able to take care of her needs as well as the team approach can handle her.
You a good and caring daughter. Is it time to explore finding the best way(s) to care for her in a new, different way?
When someone stops drinking and eating, it's a sign they're withdrawing from life. She has cancer, she's 88…she may be starting the dying process. Taking her to the ER…that's very unusual for hospice to recommend, though I can see why if you thought she may have broken some bones.
There are hospitals with hospice/palliative care units. Check with yours. Sounds like she needs more care than you can give. If nothing else, you can get some respite care that way, and learn some skills from the nurses there.
If Mom can't walk, then she will need to use Depends. Or, place a Commode right next to her bed. Lack of water probably caused the fall, you get lethargic when dehydrated.
Mom will need Hospice whether in ur home or in Skilled Nursing. Stomach cancer is not curable and painful. She will need that Morphine and will probably be out of it near the end.
Prayers for Mom and family.