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.
First of all, take deep breaths. Your father's passing means that at the moment you are going through a crisis. Just when you need time and calm to adjust, you find that the support for your mother has been called into question.
Have the hospice services for your mother already been withdrawn, or has this just been mentioned as a possibility?
Don't try to do this alone. Get help even if you have to pay for it yourselves.
My mother used to tell people that she wasn't ill because her symptoms were well-controlled. In her case it was pride and denial, but I'd expect a hospice team to have a better understanding.
I feel like I want to advocate for her but honestly it may be mostly for me?
Excuse the vulgarity, I do apologise, but I just spat coffee all over my keyboard reading your last sentence. I will return to the main box to answer this point properly.
Under Madicare rules a pt must be at the end stage of their illness & it will only pay for 6 months, however, as you know people don't die on a time frame; therefore, Medicare will extend the hospice care on a month-to-month or for another 3 months if the pt meets their criteria. Yes, Medicare is known to pay up to a year or so. This means the pt must show signs of declining. Which your mom made not be showing at this time.
This doesn't mean she is not seriously ill. It just means that she may not be meeting Medicare requirements.
Some people for whatever reason will be on their death beds one minute and the next not showing any symptoms. Does this mean their better? "No" They are just asymptomatic (at the moment)!
CHF does not heal or get better on it's own. If she was dx with CHF and did not have treatment if it was possible than your mom is still very ill.
Appeal to Medcare! You will probably have to find away to get your mom to a cardiologist. Medcare will want proof that she is still 'going through her end stage'.
On another note: you state that your mom is afraid of dying, do you know why? Can you talk to her about it? Or maybe she needs permission to leave this world! I have seen where people hold on even when it looks as tho they shouldn't be (beyond medical reasoning), and the minute someone tells them that it is ok to leave, they pass on. Tell your mom she has nothing to fear and that your dad is waiting for her. Give her your permission to go! This doesn't mean she will just pass away but when she is ready 'she'll let go'.
May our God be with you and shine His light on your path to show you your way. May His grace, mercy, and peace cover you and your mom in this most difficult time in Jesus' name. Amen
It also was good advice for her to talk with her mom about fears of dying.
And yes it's important to let people know when they're at the final stages of death, that it's ok to go, that they will be missed and always remembered. God bless you for your kind heart, and honest advice.
Right. Better now.
The medical director of the hospice service is asking the nurse for her assessment of your mother's condition - to be blunt, whether your mother is dying of heart failure or just experiencing the normal decline of extreme old age.
Line up the medical records you have, including especially those which were referred to for your mother's original hospice admission/approval. What do they say?
If YOU don't have help, you can't care for your mom properly.
Hospice is not MOSTLY for you; it's for the PROPER care of your mother.
Is it possible to tell your mother that it's really for the best to present with her true self to the medical professionals at this point and not to try to convince them that she's "all better"?
My mom and I had a thing; when we travel by air, I'd say "look pale". She was over 80 at the time and she needed special accommodations for TSA lines and an electric cart to get her across the very large Minneapolis airport. She wasn't going to get those by looking perky.
She would cooperatively list her head to one side and sigh as needed.
I'm so sorry for your losses (your dad and who your mom once was). This is all an extremely difficult time of life.
I agree with Bobby40 to contact your local Agency on Aging. Hopefully, they can point you in the right direction.
My dad was on hospice nearly 4 years after being diagnosed with prostate cancer that spread to other parts of his body (kidney, bone, etc.) We were told that it would likely be a speedy demise. No one can really say how long someone will live!
At one time, I was told that hospice was going to drop him. I immediately contacted a friend who was a hospice nurse for another company and she was able to evaluate and reassess his care needs. We hired her company and they came on board without us losing a day of hospice service. It was a great blessing, even though I didn't have the knowledge ahead of time how it would all work out.
Simply being extremely old is not a qualifier for hospice. Medicare will pay for some in-home medical care for chronic health conditions, so you might investigate that.
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!)
Take care, and good luck.
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.
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.
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.