Managing mom’s home hospice care. Now I have medical problems of my own. What to do?

you need more clarification and specifics on exactly what disease it is. Could be anything or nothing. Don't jump to conclusions. Maybe get 2nd opinion. If you don't want to do caregiving, or unable to, please hire a good reliable private pay aide. Agencies most of the time don't work since they won't show up. Choose an aide that can stay...they're mature and experienced. Perhaps your mother's dr can prescribe something to make her sleep through the night and then so can you. Feel better soon! Hugs.

My heart goes out to you. Since you got this diagnosis, your health will now take precedence over your mother’s health. Now is the time for you to seriously think about putting your mother into a facility so she can get hospice care since you have to focus on your medical condition. Your autoimmune disease will be an uphill battle for you and you will need every ounce of your energy to cope with it. My daughter has MS and some days are good while other days are bad, but she is coping with the disease. She was also diagnosed with breast cancer and is now in remission.

The good news about autoimmune disease is that today’s research and treatments are making it easier for patients to cope and live longer lives. As long as you take your medications and treatment and follow your doctor’s instructions, you will do well. I know that we all go through our daily stressors, but you should try your best to avoid stress as this can trigger your autoimmune disease to act up.

Wishing you well in your journey with this disease.

Many people have said home care works, until it doesn’t. I pulled it together and hired a 2nd weekend person, so that I will not have to sleep over ANY days anymore. This just happened yesterday. I was cautiously optimistic.

Then last night, my super reliable M-F Aid called out for the first time ever, at 7pm - the time she was supposed to be starting. Luckily my brand new weekend aid said she would cover. (I can’t drive out of town on a week night in the middle of winter, sleep over moms and then make it to work the next morning).

I was irritated but holding it together and trying to look at the bright side. THEN today my M-F person who was now going to do Tues - Sat said she has to leave first thing in the morning on Saturday and will not be there all day or night Saturday, leaving me with Saturday and Saturday night myself. AND were having a birthday party for mom Sunday (planned before any of this happened). There’s more, but I’ll leave it at that. I’m so done.

Lilly, I am relieved that I don’t have to deal with all the moving parts so my mother could continue to live in her home. It wasn’t sustainable anymore. We were navigating one crisis after another. Between health issues, caregivers, house maintenance problems it was very hard.

It’s so much less stress on the family now that the two of them are in a nursing home.

Think about it, it’s probably time.

You are correct. It is time. The problem is mom is still considered competent from a legal standpoint. So I can’t “place” her. The hospice nurses know she has signs of dementia, severe at certain times of day, but will not officially weigh in on that.

This means I would have to bring mom to a competency evaluation by ambulance. She will not go. And I would bet my life she would pass it with flying colors. She’s witty and can talk about the president and current events with the best of them. She just has no insight on her current health situation, planning for the future, and how her care is gutting the lives of others (me and my family).

She says “if you’re going to put me in a Nursing Home just shoot me”. End of conversation. When I try to calmly explain how untenable things are becoming she literally turns her head to the wall and will not speak to me.

Also, my SIL came Sunday. I told her about my potential lupus diagnosis and she dismissively said, in front of mom, “oh my sister has lupus. It’s not that big of a deal. She still works full time.” I was trying to let my mother know that all this extra work is putting a strain on my health. But now she thinks it’s nothing.

Anything my SIL says is gospel. Which is another thing that bugs me. I take care of everything, but I’m the one she won’t listen to. SIL pops in for a few hours once a month and mom hangs on her every word. Or maybe it’s that SIL is saying what she wants to hear.

Lily, the Heck with what SIL thinks. Or what mom thinks.

Mom is competent? Then let her, with SIL's help, arrange her own care. Step aside. (Do you have POA? Resign).

What SIL thinks about Lupus is neither here nor there.

What you NEED is what counts here.

Don’t you love when the LO absolutely loves the flying monkeys who tell them what they want to hear !!

Lily , you are burnt , I’m so sorry you are stuck . It stinks when everyone thinks LO is competent but as you said she has lost insight regarding her care needs. And of course she is reluctant to get tests for dementia. Is it possible for you to place her ? Do you have POA? She is bedbound correct ? , if you call APS or County Area of Aging maybe they can help ??? Can hospice help you at all with placement ? Idk. Try anything I guess.
I wish for your sake your mother to get placement if possible.

"....is she just a selfish person who truly doesn’t care about me, and only sees what I can do for her?"
Bingo.

At first you think it's very upsetting and scary with their bizarre behaviors.
After awhile, you see the laziness and selfishness spew like a volcano.

Not your fault she got old. We all get old and die. Nobody gets out alive.
What gets me is the good people die young, and the nasty ones seem to live forever. Is this a cruel joke the Universe plays on us?

I'm only seeing this post now.
Your mother is receiving hospice care. So she's got some serious illnesses. Not speculating of illnesses. Not 'maybe' or 'could be' or 'probably not', but bad off enough that hospice is on the scene. So if she's more concerned with her own ailments than with yours, it's understandable because she's actually in hospice care.

You care for her on the weekends for five months now. Get weekend help then. If she can't afford it then she can go to a hospice facility.

As for people telling you that it's the disease talking, well you'd know your mother better than anyone wouldn't you?

Was she snide and verbally abusive to you before dementia? If she was then it will only get worse with it.

They need to add one more symptom to these diagnoses of people suffering from illnesses, and that is narcissism. Everything is me, me, me. (Just a bit of humor here) Sometimes it is the disease and sometimes it is the personality of someone.

I see this a lot in my line of work even with people who don't have dementia. The world of these people have shrunk to a point that all they have is their illness and their reality that they are not going to improve. I have a sister who is currently in a rehab since 2020 and everything is about her. She was like even from a young woman.

If mom is in a facility, she is in safe hands. Please take the time to follow up on your own health needs, doctor's appointments and take care of yourself.

I went back and re-read your question. Get someone of the weekends and take care of your health.

@Burnt, Barb moved ( or continued) this thread in the discussion section:

https://www.agingcare.com/discussions/an-excellent-example-of-why-home-care-doesnt-work-485569.htm