She was evaluated, and no longer has capacity. She's a frequent flyer to the hospital. I've been cooking all of the meals for two years, giving her her medication and taking care of the house which is now in my name. I've been her caregiver for seven years. I'm 55 with diabetes and sarcoidosis. My wife has lupus, chronic pancreatitis, Reynauds, Sjogrens and fibromyalgia. I'm suffering from severe caregiver burnout, but Mom won't consider going to a facility. We can't even get her into a shower/bath because she won't take one. She won't go to a doctor, so we rely on her frequent trips to the hospital, where she's combative with them. I can't deal with this anymore as it is causing enormous stress, is taking a toll on my physical and emotional wellbeing, and my relationship with my wife and son. I'm not a nurse. I don't have the training, nor do I want to spend whatever time I have left taking care of her. I don't go anywhere or do anything. The house has antiquities, jewelry, firearms and I don't want a stranger here. I've lived up to my responsibilities and obligations, but it's time to have a semblance of a life again before this destroys it. I found a really nice facility which transitions from independent living to skilled care, and is only 45 minutes away. She has Medicare and Tricare for life, and has a long term care insurance policy. I love my Mom, but I'm at the end of my rope. I have POA and health care proxy, but can't afford to pay for the process of obtaining guardianship. What do I do?
That is a good idea, refuse to take her home for her next emergency room visit.
Make sure you check with your own doctors, and get notes for yourself and your wife that neither of you are in any physical shape to be providing 24/7 care to a combative, recalcitrant elderly one! So if and when you want to visit, you can say, sorry mom, we are following doctors orders! (unlike you, haha)
Hang in there. You really have done a great job! For a long time!
Hope this helps.
Sparkles
You could refuse to accept her back when she is next hospitalized if you decide not to contact Hospice.
A Court appointed Guardian will be chosen. Fees will come out of her estate.
This is if you do not wish to be her Guardian. You will not have to pay court fees, they will come out of her funds.
As to her refusing to go to a facility (not to mention she does not have the mental capacity to refuse at this point)...you have no option. If you can not care for her safely, your wife can not care for her safely and the stress is destroying your health, your wife's health and putting undue stress on the rest of the family.
There are statistics that many caregivers die before the person they are caring for dies. You do not want you or your wife to be added to these statistics.
The sticky could be that you transferred the property before dealing with Medicaid, so you need to be mindful of that & plan on speaking with a elder law attorney BEFORE ever applying for Medicaid. I’d highly suggest that if you do this that it is an NAELA or CELA level of atty as this is more complicated than the usual spend down plus property law issues as well. But don’t fret over this imo.
Depending on her assets, she might have the $$$ to not need to apply for Medicaid as she can private pay. So any worry about transfer penalty doesn’t matter. But you have the caregiver exemption to look to should Medicaid need to be applied for. There's other exemptions too - like low income heir, disabled heir. Each heir has to have their own exemptions and provide documentation though.
Also on another tangent, can your mom “play well with others”?? I ask as your looking to a tiered facility for her. My mom was in one, entered as IL resident & they required 2 “play dates”; 1 in order to place her on the wait list initially and 1 the week before she was to move in (abt 4 months between these). We looked at 2 back then. I call them “play dates” as they were akin to what the 1/2 day (activity, lunch, quiet time, snack, activity) we had to do to get our kid a space within the private school early childhood system in our city. For my mom, it was we got there met briefly with director of IL then we did an overall tour, then she went solo to a scheduled mid morning activity, then lunch, then a tour of an empty apt then a sit down with admissions. During the activity I went on a more detailed tour of NH and actually into the hospice wing. (I was beyond sold as it appeared to provide a seamless transition from one phase to another for both medical needs & finances ((they had Medicaid beds)) and nearby my mom’s neighborhood, I was oh so mistaken but thats another novel.)
I’ve found the tiered community do self selection more than a freestanding place would as they need residents who can get along with others for possibly a decade or more. A curmudgeon or two they can expect but if your mom is obviously hostile, hateful, seems incapable of being a good community member, etc. a tiered won’t keep her. Most tiered are CCRC with a hefty buy-in so there’s self selection there as it’s more financially secure folks plunking down 6 figures to begin with. If a buyin CCRC is what your looking at, please look at the contract terms for cancellation of contract (from their side) due to psych or “special needs” or “beyond standard care” issues and due to death..... contract is very weighted to their side. Even once they die, the CCRC contract still is in thier favor. So read carefully, ok!
Good luck & I too vote the next ER you refuse to pick her up and she goes to whatever place you’ve prearranged if they will take her or take the luck of the draw place that the hospital discharge planner can find for her. Your a wonderful son, but you & your bride need your own lives with mom in a facility.
After the 5 trips to the ER, we put her into hospice and it was SO much better. Nurses would visit twice a week or more if called for some ailment (constipation) she had that used to mean a trip to the ER. She got a bed bath twice a week which she loved and made her feel really good. She had more visitors than every before. Hospice is truly a godsend when the elderly have so many health problems. No more trips to the ER!
My advice is to get someone impartial that she trusts (like a doctor) to tell her - firmly - she needs to move for her own safety (they are very self-centered at this stage in their life - it is all about them), then move her. It will make an incredible difference in your life. She'll be well taken care of and your visits will be more meaningful. My mom's AL is 2 miles away from where I live so picking up little things for her - which she always had a list for - was easy. Good luck!
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