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

Fred, it may not help to know you are not alone. That being said, all the advice I've read seems appropriate for your situation. The best option for someone who needs help but is too stubborn or unable to realize it is during the next hospitalization to work out the arrangements for elder care with the social worker, whether it's an AL with memory care or a nursing home. As the baby boomers age, you will find more and more better quality care facility for the elderly. I have cared for my mom for 10 years due to her fairly onset dementia. She was diagnosed in her late 60's. She's now 80 and I just moved her to an Assisted Living facility where they do pretty much everything for her, as I did, but there is a staff of them and one me with health issues like many of us. I'm actually starting to get a little sleep at night. I don't think I would have lasted much longer. You should start doing your research on different facilities/homes so that when the time comes you can be prepared. I'm still struggling with mom not being home with me, but I know it's for the best. I had little to no social life and I still work fulltime. It can really take a toll. We all love our parents but we aren't super heroes. It sounds like she has the means to pay for the care and with you being  POA you owe it to yourself, your wife and your son, not to mention your mom to do the difficult but necessary thing and allow others to provide the care you can no longer provide. Trust me, it was not easy for me to say this. I wish you the best possible outcome.

Dear Fred,
I feel your pain and your situation is unfortunately a very difficult one. I was basically in the same situation with my mother and no amount of begging, pleading or explaining to her how hard things were for us helped. Sadly, you really only have a couple of options as I see it. You have to extricate yourself somewhat from the situation and let things run their course OR bring someone in to help. Since your mother has a long term care policy she would be eligible, I believe, for many in-home services. There are reputable people who are bonded who can help you and you may need to learn to rely on others in order to save yourself. As difficult as it may be, sacrificing your wife’s health or your own doesn’t seem like the right answer to me. Perhaps she is a member of a local church and the Pastor could recommend someone to come in and help. What about having meals delivered in to her home at the very least? Most states and communities have Meals on Wheels. There may be another home delivery service available that is affordable for at least a few meals. As I said earlier, this is an extremely difficult situation but I doubt anything will change on your mother’s end of things. Ultimately, after months and even years of fighting to get my mother to make a better decision for herself or allow us to help her, we decided that she would have to have a catastrophic event happen before anything would happen or change things. Also, we lived in another state so it was doubly hard. It finally happened on Thanksgiving 2016. She fell and broke her hip and shoulder. Thank goodness we happened to be there and found her as soon as it happened. The breaks weren’t severe enough to require surgery but were significant enough to require rehab. Once she was in rehab and was ready for release the doctors said she couldn’t go home alone. She went straight into Assisted Living without many problems. She never quite knew what was going on. As sad as it all was, at least we knew she was safe and eating well. We eventually moved her up to our home state into a lovely smaller Memory Care facility. Although she isn’t completely happy, she is so much better off and we are now close by and visit often. I hope this doesn’t come across as judgmental in any way at all. This may be the one of the most difficult decisions you may have to make. I hope you will consider taking care of “you” a little more. Remove whatever valuables from the home or put them in a gun safe or lock box. You didn’t mention whether your mother lives alone or if you and your wife reside with her. In any case, things are just things. Your health is worth more than gold! Hope this helps or at least know that others share your pain.

Follow up - What my brother did was type up a letter, supposedly from "Elder Services" at the hospital where she was seen/treated outpatient for the leg wound. Who knows if they even have such a department! In it he had it say that based on their evaluation she needed to be in a safe environment. They made it her choice to agree to the place we choose, or THEY would put her somewhere. She was ANGRY, but reluctantly agreed to go. My brothers handled the actual move - I stayed away for two weeks!

In your case you could likely get a real letter from the doctor(s) and maybe even the SW. The benefit, either way you do it, is that the BLAME goes on someone else, NOT you! Then anytime she begs or demands to go home, you use the excuse that the doctor wants to see her get well and stronger before she can go home. It leaves the door "open" for her, gives her hope that perhaps one day, but still leaves the blame for this decision on SOMEONE ELSE!!! Keep extra copies of any letters used, and hand them to her when she wants out. You could even draft a second one in which the doctor says she needs more time in "rehab" for post-move.

Also, we have not made use of Medicaid, but do beware what others have said about the house (and all other assets.) Medicaid will do a 5 year look back and if any assets changed hands in that time frame, she/you will have to pay any extra needed above/beyond her income/LTC until that dollar amount is "paid back." Only then would Medicaid kick in (and beware they will recheck after death!!)

What brought me to this site initially was a mother who was refusing to let anyone come in (just 1 hr/day to check on her and her meds!! She was and still is mostly able to do ADLs), move in with one of us (preferably not me, I could never lift her and she cannot do the full stairs in/out) nor would she consider AL, even though she visited many and talked of one day needing to go there....

Our attorney advised us that we could not just drag her out of the house (obviously that was not the plan), but basically if she was not willing, we would have to go guardianship. HOWEVER, the facility we choose would NOT do committals! AUGH! Puts us between the rock and hard place! Sounds like this is where you are currently...

So, staff told us just get her here, we'll do the rest... A little trickery was used to make the actual move (she had literally gotten a leg infection just before the move was planned - serious infection, delayed move a few days!) For months after she hounded one brother to take her back to her condo, but now she wants a ride to her mother's or her previous home...

Anyway, most of the advice given should be helpful. Try to skip the guardianship path - it is time consuming before AND after, and you really should not need it. Your POA and medical directives should be sufficient. It is more a case of just getting her there. That could be directly from the hospital (hey mom, we're treating you to lunch at this nice place! Prearrange this with them.)

Be sure you have a doctor note indicating she is not competent (two doctors would be even better, perhaps one from a hospital trip?) Have all paperwork done up/signed with the facility and either move her own furniture in or buy something. We ended up buying because we would not be able to move what she is using. If your mom has another multi-day stay at the hospital and all is arranged, you could move at least enough to get started.

Although you could try the IL or just AL part of a facility, I suspect your mom might be a flight risk (being against the idea, she will likely try to leave!) Sure, she probably cannot move fast, but if no one is watching her (and IL/AL does NOT watch who leaves) she could slip out. I would highly recommend MC as she will NOT be able to leave on her own.

Not knowing how long she might last, it would be best to go the MC route rather than having to move her a second or third time.

So, get on the list at the facility (many have long waiting lists!), work with doctor and/or social worker at the hospital and/or the staff at the facility. Have everything in place. Even if she does NOT have a hospital trip, you can still, once everything is ready. take her "out to lunch", and then go directly to the MC unit (prearrange free lunch - they often do this.) Some anti-anxiety meds might help too. She might be able to understand enough to figure out what is going on. Prepare the LTC paperwork. Any income she has would pay, including that LTC, but if Medicaid is needed (NOT Medicare), you need to start that paperwork as well (Elder atty or perhaps the SW can assist.)
NOTE: not all facilities accept Medicaid...

Final note - no matter how she reacts, please do NOT feel guilty for this!! Your health and that of your wife takes priority. If one or both of you become seriously ill or disabled, or worse, dies, what becomes of mom then? Get her into a safe place. Avoid visits initially if she takes it really hard. Give her and the staff time to settle (some never really do, esp when they forget or drift back in time/memory.)

NO GUILT!!!! Repeat that often, and if/when possible, visit often (keep visits short, leaving if she becomes combative or negative.)

You have gone above and beyond taking care of your mother. You've done your duty and you have been a great caregiver and son. You have her power of attorney. You don't need guardianship. Talk to your mom and tell her you won't be able to take care of her sny longer due to your and your wife's own health issues. Get her a room at the facility and put her bed and personal things there with some things from home. Tell her you want her to be safe and be well cared for because you love her. Also tell her that you will NOT be dumping her off there never to return. They always worry that they be abandoned and forgotten about. Tell your mom that you are close by and will come to visit her.
You have to do what's best for you and your family AND your mother. When you aren't taking care of yourself you can't be any good for your mom either. It's beyond time to "have the talk" and get your mom into the nice facility. She will try to guilt you but don't you guilt yourself!! She'll be fine and you will get your life back so you can spend more time with your wife and son. And you should take a much deserved vacation. It doesn't have to be expensive. Just get away and relax. Please take this advice sooner rather than later.

You must take care of yourself, else you won't be around to take care of your LO.

Oh, forgot to add...
This is what the payments for Long Term Care Insurance has been for.
If your house burned down would you live in a shelter because you did not want to use the insurance money? If your car was damaged in an accident and was not usable would you take a bus or cab because you did not want to contact the insurance company?

Side note contact the VA she may be eligible for placement in one of the Greenhouses (Home type living facility the VA has) or if she needs more medical care she may be placed in one of the hospital units.

Forgot to add: why waste long term care insurance? She can use it to pay for facility after Medicare runs out!

If she has Nurse assessment or is in hospital for 3 days Social Worker at hospital will help to get her placed in SNF & you can mention the one you prefer ...also have her dr declare her incompetent. You have poa & Health proxy so YOU are in drivers seat . Hugs to you & your family

please have a councilor guide all available avenues both finances and nursing homes...

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!

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.

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.

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.

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.

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.

She is content where she is at.

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?