Does a place even exist that can PROPERLY take care of someone with a high level of physical needs that is totally covered by Medicare (and then if longer-term, Medicaid)? I have been unable to work while caring for her the past year+ intensely and a couple of years prior pretty much full-time, too. We’ve burned through all of our savings, so no money to hire home help, either.
Since breaking her hip last year, my mama has been in a couple of acute rehab situations and a 100-day stint at our local SNF for rehab. As well-meaning as they are, all of the places we have been are understaffed and she has often not received what I consider “adequate” care unless I am on site staying on top of her needs or even providing it. She has mental confusion when infection pops up (recurring UTI) but is not otherwise cognitively challenged beyond the usual age-related stuff. She has a healed sacral wound (thank you to the first acute rehab grrrrr) that opens up quickly when hospitalized and not receiving the usual care I give at home. She’s not incontinent, but is not easily mobile, either, with transfers and standing difficult at best. She can usually feed herself, but sometimes needs help if infection is raging. Urology has me doing straight catheters 3-4x/day to reduce the retained urine in an effort to decrease the infections. She has Parkinson’s and medically managed congestive heart failure, so quite a few meds and supplements, and some meds need pretty strict timing and some level of discretion / judgement. She definitely needs PT to get back to her mobility just a couple of months ago before this last stretch of UTI’s knocked her flat.
We are at the hospital now for IV antibiotics, but I can’t continue to stay in the room with her or even do the 8-12 hours days on site I was doing at the SNF. But is there anywhere that can take care of her?
Frankly, I feel like if I don’t continue to provide the care personally and place her in a facility, she is assured of rapid suffering and decline. That just can’t be all there is, though. Certainly there is somewhere that can provide this care?
No, there is no perfect place.
That includes your home.l
If you used all YOUR savings, that is a double tragedy here, as it takes a lifetime of savings and investments to get enough money to make your last years as comfortable as you can in either ALF or MC, neither of which is in that nirvana of "perfection". Who will take care of YOU in this perfect world coming with your assets non-existent?
Not everything can be fixed or made perfect. Certain old age falls into that category.
She is a real candidate for Hospice Care.
We hold on to our elderly LO's far past their 'happy' state. Medicine can do SO much to keep someone going--long after they themselves want to be DONE.
I'm AMAZED at the length of time a person deemed "imminently dying' can last. With just comfort meds..and also on basically starvation diets.
This is a personal and difficult decision.
Yes, the level of care she needs exists. You're doing it. How long can you sustain it?
I just wish you luck (and wish you hadn't spent all your own money on her care--you're going to need that, and it won't be there.)
How old is mom?
Is she having any quality of life?
It sounds to me as though you are killing yourself, emotionally, physically and financially, keeping her alive.
I would look into having her transferred to a long term acute care hospital. These are places that specialize in the long term care of frail, chronically ill patients with acute needs.
But if this was my mom, I would think long and hard about getting a consultation with palliative care and/or hospice. Making her comfortable would be my highest priority.
I was at this point several years ago when I realized that every trip to the hospital was setting mom back much more than it was helping. She became a palliative care patient at her NH and transitioned to hospice after a fall.
My heart goes out to you. I remember how very painful those decisions were.
Death is not a horrible nightmare to be avoided. If the body is simply failing, limping along, patched together by medical stopgaps, and wearing out, then death is the next natural step.
I continue to be astounded by those who profess devout Christian faith, then backpedal, scramble, scream, and screech in an effort to avoid the promised “afterlife” awaiting the faithful. If you believe a better world is there, then…what are you waiting for?
Fact: the medical profession has no choice but to prop you up and medicate you, unless you have a pretty solid DNR and advanced directive in place.
To the children of these very, very old people (often approaching old age themselves!) the question becomes, at what point is this just not affordable? To what extent are you willing to bankrupt your own old-age savings to extend a failing life another year or so? How much do you want your own children to fork over to keep you barely alive?
Medicare and Medicaid have clear rules. Research them, grab what you can from them, then…let go. I think you have certainly come to that point.
Although it's not so easy anymore, my spouse and I are still able to do ADLs on our own and live in our own home with minimal outside assistance (so far). We sincerely hope we won't need a facility but would accept it, if necessary, to mitigate becoming a caregiving burden on our family. For sure, that prospect is distressing, if not dismaying, to contemplate. In an ideal world elder facilities would be adequately staffed (by fairly compensated employees) to deliver patient care at the levels required. However, 21st century America is NOT an ideal world for most of us who lack infinite $$$ resources.
You not working in order to provide the "proper" care to mom has put you in a bad position, having burned through both of your savings, etc. You cannot survive this way, so you have to settle for Plan B. Realize that moms care may never be the same as the care you've given her, but the cost has been huge to provide her that care! She WILL be cared for in a SNF paid for by Medicaid, but not likely to your standards. Not all elders are "assured of rapid suffering and decline" while in Skilled Nursing, not at all. My aunt was on her deathbed when she was placed in a SNF. She got better there and went on to live 5 more years until 92.
Wishing you the best of luck with all of this.
I recommend looking into board and care homes. They have a better resident to caregiver ratio, they are less institutional and they cost way less.
One thing that every caregiver needs to realize, nobody is, nor should they be, at the beck and call of the care recipient. This is why family caregivers get burnt to a crisp and 40% die before the ones they care for. Prioritizing care NEEDS and meeting the basic care requirements are what should always be provided. Asking how high when the care recipient says jump creates unrealistic care ideas and that means everyone not willing to die for them is providing inadequate care.
Best of luck finding the best facility that can meet your moms care NEEDS.
You certainly have your hands full and then some.
I feel your pain. I cared for my mother who had Parkinson’s disease. She died in 2021.
Parkinson’s disease is brutal in the latter stages. It’s impossible for families to care for their loved ones without becoming exhausted.
Have you been in contact with Council on Aging in your area? They will do a needs assessment and can make recommendations on how to best serve your mother’s needs.
Speak with your mother’s neurologist and primary care doctor to see what they feel is appropriate for this time.
Has your mom participated in home health? My mom did rehab and home health. Home health provides occupational and physical therapy plus nursing care and an aide.
My mom’s doctors recommended starting off with palliative care. She eventually received care from a hospice organization.
Research hospice providers thoroughly because each organization will vary in what type of care they provide. Select the best fit for your needs.
Do not neglect yourself and your own needs. You can oversee your mother’s care if your mother is able to be placed. Medicare doesn’t pay for care in my state. Medicaid does.
Wishing you and your mother peace as you continue moving through this difficult time.
https://www.medicare.gov/Pubs/pdf/11347-Long-Term-Care-Hospitals.pdf
https://www.kindredhospitals.com/resources/blog-kindred-spirit/2018/09/13/your-guide-to-medicare-and-transitional-care
The first link is from Medicare.gov explaining how they pay.
The second link is from a large chain of LTCH’s, Kindred and explains how Medicare pays. There are such chains across the country. This is just one I’ve heard mentioned.
My experience was DH aunt was in a SNF on hospice. Diagnosed with pneumonia and ended up in the acute care (taken off hospice) for about 20 days, back to the SNF, had rehab (mostly speech) at the SNF, another 20 days or so, back on hospice and is still in SNF on hospice.
This was almost exactly one year ago. The hospice director helped me navigate these systems.
Since then I notice the local acute care hospital has closed, although a larger one is in a nearby city.
In retrospect, although she was without her excellent hospice care all the time she was in the rehabs, she did have more 24/7 care.
Aunt has dementia, totally bed bound and is treated for thyroid and hypertension so does not have all the issues your mom has.
Yet, aunt qualified and Medicare paid.
She saw a doctor daily, had treatments and escaped the stress of a SNF while she got better and I could trust that what was promised was pretty much done.
Here is a link to an article explaining the levels of acute care which might help.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3646345/
Have you spoken to Hospice? Your moms condition sounds very stressful for all and painful for her.
Atul Gawande wrote a great book “Being Mortal, Medicine and What Matters in the End”. He has five questions he discusses in the book that medical doctors should be asking patients near the end of life to help patients realize where they are in their life’s journey and to try to sort out what is most important to them with the time they have left and which treatments are worth the effort based on their condition and personal choices.
It is hard, especially when you yourself are worn down. I was very thankful I had the hospice director help me navigate the steps above. I believe in layers of help, no matter how small.
Let us know what you find out. We learn from one another.
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