Mom has dementia. Dad’s too sick to take are of her.

Mom and Dad live at home. Mom has dementia, and up until a few months ago, Dad’s taken care of her: paying the bills, reminding her to take her meds, driving her to doctor’s appointments, etc. Dad’s respiratory problems have gotten worse, to the point where he passes out even when he has his oxygen tank. His doctors have taken him off his meds and told him to make the best of his remaining time. He’s worried about Mom and has talked to her about moving into assisted living so they can continue to be together, but Mom absolutely refuses and keeps saying she’d rather die in her own home. I feel like this situation is unsustainable. What can I do about it?

A horrible waiting game

I’m going to guess that what’s stressing you out is that you don’t know what’s going to happen next and you want to be ready for it. So maybe it will help to break it down into scenarios.

Scenario 1: Both parents continue to live

One possibility is that Mom and Dad continue to live and maybe even stay at home together—which keeps whatever retirement income, pension, etc., in place as long as whichever parent is drawing it is alive. Neither one of them passes away in the near future, but someone has to step and and basically pick up the caregiving for Mom that Dad was doing In this scenario, Dad’s still mentally “with it” and capable, legally at least, of acting on his own behalf. The fact that he’s seldom healthy enough to lift a pen doesn’t change that fact.

You mentioned that you talked to Dad about moving both him and Mom to an assisted living facility while the two of them are still alive, so that there would be someone capable of taking care of both of them. Your Dad’s made an intelligent choice and is putting Mom’s interests first, and well…Mom’s not really capable of thinking for herself. No matter what you do, she’s not going to like a change in her environment.

Since Dad’s often in and out of consciousness and not able to have long conversations about legal matters, you may want to get your own elder law attorney to figure out how to legally handle the transfer of Mom and Dad to assisted living so that Mom doesn’t have to sign off on it. That probably means POA or guardianship for your mother. You’ll likely need medical proof of her dementia (diagnosis from a geriatric psychiatrist) sufficient to demonstrate that she’s not capable of handling her own care. See if that’s something Dad can sign off on, and if it isn’t, see if Mom’s willing to sign off on that paperwork. If not, you may be able to have her declared incompetent.

Whether care falls to you or Dad depends on who Power of Attorney or guardianship falls to. It’s probably better if it’s you.

You may want to consider talking with Dad about HIS care and how he wants that handled legally. Given his health, don’t be surprised if he is willing to sign POA papers as well, in regard to himself.

Scenario 2: Dad passes away

You mentioned your Dad’s not healthy enough to take care of your mom. Have you talked to him about getting your help to do so—not just cleaning house, cooking, and chauffeuring them to doctors’ visits, but in a legal sense? While he’s still alive, talk to him about his wishes for how Mom’s to be taken care of, then talk to his lawyer and have papers written up that say who’s in charge of Mom’s caregiving when he dies. This is typically Power of Attorney or Guardianship. I’m not a legal expert, but I imagine if you explain to Dad’s attorney that the situation is deteriorating, he can advise you on what happens with the guardianship while Dad’s still alive and what happens after he passes.

You should start looking for assisted living for Mom (and possibly Dad) right now. It sounds like your Dad’s already given it a lot of thought, so be grateful he’s actively part of the process! Since you already know it will upset Mom, try to have those conversations privately—whenever you can steal the opportunity to do so. But get things set up tentatively: start calling assisted living and dementia care homes to get a feel for what would be acceptable to Dad and make Mom feel as comfortable as possible.

Mom might not like moving, but you might be surprised. My husband’s mom strongly opposed moving to assisted living while she and my father-in-law were both still alive; but when my FIL passed, MIL was pretty happy to have someone else worry about all the details of life.

Keep in mind that as long as Dad’s still around, your authority (and plan) to spend Mom and Dad’s shared assets to take care of Mom is something you should discuss with Dad. Then get those papers signed while Dad can still see that Mom’s going to be cared for. You can still get them signed when Dad passes away, but at that point Dad will never know Mom was taken care of, Mom will have to sign the papers, and well…you already know she’s got dementia.

Scenario 3: Mom passes away

Perhaps the least expected but legally easiest possibility is that Mom’s dementia is farther along than anyone thinks, and that for one reason or another, some aspect of the disease catches up with her and she passes away before Dad. As long as Dad’s still around and barely hanging on, he’s STILL not able to take care of himself. I mentioned previously the idea of talking to Dad about POA or guardianship for HIS care. Mom’s passing is a sign that that conversation with Dad should probably already have happened.

Taking care of you

It’s sad enough watching life’s merry-go-round slowly grind to a stop for your parents. But in a way, that slowing to a stop lets you think NOW about the outcomes we dread, create rational action plans, and put them in motion before you’re overwhelmed with grief and loss.

Dad’s already on board with getting Mom and him set up for residential care.The best thing you can do for Dad is make sure he can see that his wishes for Mom’s care are acted on—or at least planned and ready to go—while he’s still here to appreciate it.

Don’t dwell on making a bad choice. There are no good ones! Try to remember that there is only so much you can do in a day, and your best is good enough; and give yourself time to fully appreciate the moments you can still share with both of your parents.