My 99 year old mom lives with me and my husband. Both my parents have been on hospice for CHF. My dad passed away peacefully at 98 three weeks ago. My husband and I lived with them as Primary caregivers and hospice was a great service and support. My Mom is 99 with dementia and anxiety disorder. Her CHF symptoms have pretty much disappeared and her biggest issue is age decline. She is 90% immobile after my Dad's death. Dementia has worsened and she now lives with us. She needs 100% care. I have relied on hospice for shower care and meds help as well as emotional support. The only meds she takes are anxiety and depression meds. I have been told that because she is really suffering from age decline and not really dying of CHF, Medicare will no longer cover hospice for her. I am devastated. My stress levels are already so high that I'm not sleeping, I'm having heart palpitations and am depressed and anxious all the time. She needs someone in the room with her all day and won't watch television...she just sits on the couch with glazed look. She is also grieving my dad through her dementia....
I'm unsure how to do this without hospice. She cannot go out to doctors anymore. I cannot shower her...my back is deteriorating from lifting and dressing her. I find myself thinking it would be best for her and me if she passed away. Then I feel guilty because she is a sweet, fragile lady that is so appreciative of what we're doing for her. But she is afraid to die, which keeps her living...even as miserable as she is. Feeling abandoned by hospice and feeling like we're being thrown into a cold ocean and must learn to swim....or drown.
Hospice does have CNA’s for bathing but to my knowledge they don’t come daily (this is to address Alan’s comment). But you have hired your own CNA to augment the Hospice CNA hours.
You get a huge “atta girl” for fighting the good fight for your mom.
Your mom needs 24 hour care. If her finances are such that she qualifies for medicaid, she could receive that care in a SNF or, with a waiver, through home care. If the hospice social worker can't provide answers, call your county's office of services for the aging.
ps - Depending upon the stage, a diagnosis of dementia can also qualify for hospice care. Basically, any diagnosis with a prognosis of 6 months can qualify.
I lay down with Dad at bedtime and reassure him he will go to heaven. I told him the nuns in catholic school told us when you die, the Lord will ask "Do you love me?" When you answer , "Yes, Lord I love you", he opens the door to heaven. I say, "See how easy it is?"
Then I list all the people there waiting for us. I don't make it sound like he has to do the alone.
Then I list all his accomplishments,,,you are a good worker, a great father, and husband. You were a good son, you are the family favorite. You are a terrific dancer, you are handsome, funny and smart and everyone loves you.
Hang in there, it won't be much longer.
I suspect each state is different - he is in AZ. Hospice in CA gave my mom a dementia diagnosis even though she didn't have it. She did have osteoporosis and had fractured vertebrae and was in pain (and ready to go).
Best of luck getting new diagnosis + much needed help.
Take care, and good luck.
The document is written for hospice providers.
https://www.nhpco.org/sites/default/files/public/Dementia-Caring-Guide-final.pdf
As has been recommended, get your mom re-assessed with a focus on the dementia. But you may want to get the CHF remission verified, too. In the two articles (one a clinical journal, one from the Mayo Clinic), the patients were much younger than 90 and interventions were done (medical device, medication therapy) to bring on the remission. Generally, CHF is said to be noncurable.
And some Medicare Advantage plans will cover home health aides in 2019. Enrollment ended yesterday but if she's already in an MA plan, perhaps...
Deep breaths, make some calls, and get back to grieving your dad and comforting your mom. (Condolences there!)