My mother lives with me. She was diagnosed with stage 4 breast cancer 6 months ago and deteriorated very quickly. A month ago she went to a rehabilitation place to help her walk again and they ended referring her to hospice. It just was getting worse. Took her home and she just declined even more to the point of not eating, or drinking, sleeping for 20 hours a day. We all thought she was dying. 2 days after she was said she was transitioning she decided to start eating again, drinking again. She is fighting sleep. She started getting better 6 days ago so I know it’s not the surge. That would have came and went. Honestly I’m just lost.
She was released on home hospice and began to improve around week two. She’s still bedridden, but with Ensure consumes up to 1000 calories a day and fights to stay awake as much as possible.
Lost is exactly what I am. Hospice requires 24 hour care. We are paying thousands a month (her money) for home health aids and have 3+ family members who care her on weekends and holidays. We’re coming up on four months like this.
She does not seem to be dying but soon her $ will be gone and the family is burning out. We all have jobs, homes, families, etc,
I wish you all luck.
https://www.crossroadshospice.com/hospice-palliative-care-blog/2022/september/07/end-of-life-rally-how-to-make-the-most-of-it/
Best of luck during this difficult time.
Told that she had maybe 2-3 weeks left, SIL took her back home and began scheduling herself and the 'boys' (aged 74 and 71) to care for her 24/7. She refused CG's, but to remain in active Hospice and all they provide, she had to accept a couple of strangers. She insisted on being in her home, said if they put her in a NH, she would die.
She stopped eating. Drank maybe 16 oz of fluid daily. All the out of state gkids flew in to say 'goodbye' to grandma.
Well, she's still here. She eats about 300 calories a day and that's it. Barely drinks b/c she has trouble getting to the bathroom and is embarassed by the Depends.
The care situation has been very fluid and changes each week.
Some weeks, she wants her kids there all day (that's not really possible). Sometimes she wants them there from 4-7 pm. Or 6-8 pm. Or not at all, but she can't use the phone, so they get all the way to her house and she sends them away. OB has a 45-60 minutes drive to get to her house.
She's become very, very foggy and doesn't live in the here and now. She picks fights with everybody. She badmouths all the inlaws (Mostly, me)..she is angry and sometimes hits the kids and/or throws stuff at them. She has these 'raging tantrums' set off by anything--last week, her CNA had put the bandaids on the wrong shelf and she simply blew up. She was so out of control, DH finally had to leave, b/c she was so impossible. (She has Ativan and Xanax, but he felt that to drug her into calmness was wrong. He's changed his tune since the bandaid episode.)
She is unable to go from point A to B in her thinking. I know she has dementia, but my DH insists she's 'just crazy'. What's the difference, really?
EVERYBODY tells them to put her in a NH. EVERYBODY. But SIL is in charge and says that there is no way her mother is going to a NH. I'm watching my DH completely shut down, emotionally, trying to take care of this woman who has no filter, no kindness, no nothing left.
And yes, she has gotten 'better' since being placed on Hospice. The CG's think she'll last months more. I think so too.
She's 93 and looks 100. Only her kids can bear to be around her, and I admit that my DH has simply not gone to take care of her when he simply can't deal. More than once he has just not showed up for his shift. I used to push him, but now I just don't care.
I guess she's really in Palliative Care, but it's about the same as Hospice.
I do not lift a finger to help. I support my DH but I do not see her and I don't plan for that to change.
He was admitted into an end of life hospice facility and nearly died. He ended up walking out of the facility and doing much better for a long time.
Eventually he entered the hospice facility again and died. He seemed to be at death’s door, then rallied for a couple of days. I thought that he was going to walk out of hospice again. A couple of days later he died.
What do we do when mom is bankrupt and the extended family has gone home because she wasn’t really dying any time soon.