My Mom is 87 with some dementia, end stage COPD, heart disease, but won't go to a home. What do I do?

Hi Fred -
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

Sorry about this situation, Fred. You note that she is a hospital frequent flyer -- can you not pick her up next time? Advise the discharge planner that you are not able to care for her safely at home any longer?

Every situation is different, but you may find it helpful to know what happened with us. My dad has dementia and did a downward spiral after my mom died. But he refused to go live anywhere else nor have any help (other than my sister and myself). When he landed in the hospital and had a pacemaker put in the doctor said he could no longer live on his own. That made the decision for us. We were horrified that he had to go into one of "those places". He was sent to rehab. During this time we found a wonderful assisted living facility. We took our dad there to visit and even had lunch. Once he had a mental picture of the place it was a little easier to help him look forward to moving. We tried to be understanding about how terrifying it is to be torn out of a place you know and love to be put in some strange place. We kept dwelling on the positives, like what we would have time to do with him if he went to a place that would take care of things. It took maybe a week, if even that, for him to settle in and love it! He thanks us each day for finding him a wonderful place to live. We now have peace of mind knowing he is being looked after. I call him every morning and take him once a week for lunch and groceries. My sister calls each afternoon and sees him each week as well. These past five years have been precious. We've gone back to being his daughters (no longer nurse maids, cooks and cleaners) and our time spent with him is all his.

Have you contacted Hospice to evaluate her conditions? Our local Hospice was so helpful in navigating this new phase of my Mom’s (and my) life. They had teams at every nursing home in our area, as well as a Care Center for respite care. They not only took wonderful care of Mom, but they made sure that I was okay along the way. She had Hospice care for two and a half years before her passing. It is a Medicare benefit.

Hi Fred, sounds exactly like my situation. Mom has COPD, depression, anxiety, and beginning stages of Dementia. For two years I tried to get Senior care into her house. No way would she allow it. Nor would she consider an assited Living. I took her for doc visits, cleaned her house, went grocery shopping, hospital etc. She ended up falling an breaking her arm for the second time. Her neighbor called me and I made the decision to call an ambulance. Long story short-she stayed in the hospital for a week and after that week I placed her in an AL. It took something to happen to her, unfortunately to get her in a place where she is safe. It’s been 7 months and she is miserable. But I also have health issues and I had to make the decision to take take care of myself first. Good luck and I totally understand your situation.

Is there anyone at the facility you've chosen who can advise you? I think refusing to accept her upon discharge from the ER sounds like an idea to use after you've exhausted all others. If you have an activated POA you can make this decision for her. I think you should just do it. Move her.

Contact Hospice. No more hospitalizations, there will be a CNA that will come in several times a week to bathe her, dress her and order supplies. That you will no longer have to get they will be delivered to you as will her medications. You will also get the equipment that you need that will help you. You will also get a Social Worker that might also be able to help with the situation.

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.

I’m so sorry for all you are dealing with Fred. You’ve gotten some good advice here already. The only thing I have to add is that if you have something like an Adult Protective Services agency and/or an Area Agency On Aging, they may be able to advise you and/or help you along the way. You must be able to care for yourself. If you lose your own life caring for your mother, you’ll have no control over what happens to her. Wishing you strength and healing.

Fred - you’ve been living in the home as a full time caregiver (so you do not have another job) for her now for how long? If it’s over 2 years then should she need to apply for LTC Medicaid you should be able to get the caregiver exemption to Medicaid Estate Recovery (MERP) program.

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.

I understand your situation, Fred. My mom has COPD, CHF and peripheral artery disease - one leg especially so that she can't support weight on it. At her last fall, we took her to see a vascular surgeon because 'she' was worried about her legs. She'd had 5 ER visits in May. Each one more stressful than the last. She obviously wanted help because she would insist on going to the ER for minor stuff then wondering why they kept her so long - doing tests. The vascular surgeon told her she should no longer be alone in her home, that it was unsafe. We've told her similar but it wasn't until the doctor told her she needed to move, that she finally considered it. We moved her while she was still 'thinking about it'. At first she hated everything but it was a nice place and after a week or so, she actually started liking it. She didn't have to do anything. We had 'organizers' come and pack up the stuff she'd take to her new AL apt. The movers came and the organizers put everything in place in her new apt so all she had to do was walk in and everything was 'like home' already. That was incredibly helpful in the transition. I think part of why she didn't want to leave her home was because she didn't even want to think about packing.
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!