New to this and looking for support

@Beth Rodland

Hi and welcome. I am sorry for your reason to be here, but happy you found this place.

This is, indeed, a difficult situation. If your parents have the same longtime PCP, I might reach out to that person about your concerns around mom's inability to recognize the gravity of dad's situation and ask them to do a quick cognitive screening. With dad unable to handle any of the IADLs associated with the household, you might see things like spoiled food in the fridge, some missed bills, dings on the car, boatloads of "charity appeals" in her snail and email that could suggest she's had a cognitive shift.

Normally, the best way to help your dad would be to support the caregiver. But when my mom was in deep denial, I finally had to step back and wait for the shoe to fall. When it did, it nearly killed her, but it did start the process to coming around to her new reality. If she doesn't come around, and doctors are willing to support you in it, getting guardianship exists as an option.

It might help to explore why she thinks he doesn't need LTC in a facility. Sometimes ladies of a certain bend or generation see care at home as the embodiment of in sickness and in health even if it means substandard care. Sometimes they don't feel up to providing the care (mom) but do worry about what others will think if they don't attempt it. Often money drives this decision for working- and middle-class couples without a robust LTC policy. Often, they'd heard horror stories about long term care taking "everything" from misinformed friends. I had my mom sit down with a fellow scout- and band-mom friend of mine who happens to be a CELA who explained how Medicaid works in our state which eased her mind about existing in poverty.

The use of antipsychotic medications is one of the quality-care metrics by which SNF/Rehabs are rated by government agencies. For this reason, many avoid off-label use of meds like Risperdal for patients who don't have a condition which is FDA-approved for its use. Locally, this seems to be a bigger issue in SNFs that have been cited for this practice in the past. A different SNF might be more open to using the medication, especially if they don't have other residents using the medication. We had the issue of dad's SNF constantly pushing to reduce or eliminate his Seroquel dose saying he no longer needed it because he was settled. He was settled because of the low does of Seroquel he was getting- duh. It's like saying a person no longer needs glasses because they can see when they have them on.

A geri-psych stay would be an excellent option in getting his meds sorted out if you can make it happen. Unpleasant as his aggression is for those on the receiving end, it must be worse for him to live thoe feelings that drive it without the cognition to work through it.

HB

I was really excited that behaviors is dementia was finally an approved indication for an antipsychotic class medication. It does have the same kinds of side effects and does carry the same Black Box Warning as other medications of this kind.

It's very expensive, but there is a coupon program available from the manufacturer that brings it down to about $20/month that can be used with Medicare.

@Beth Rodland said:  "I keep feeling like my mom should be the one to tell him he can't come home, not me. I just keep putting it off by telling him he needs to get strong enough to get released from rehab and then I can get him to a nicer place close to mom. Maybe I'm being childish. I just feel that his wife (my mom) who has been married to him for 60 years should be the one to have some of the hard conversations with him. I find myself really resenting her putting it all on me which makes me feel like a terrible daughter. She's my mom. But she's a difficult person to love. And I should love her."

I am sorry this seems to feel like it is all on you.

I think there are 2 pieces to this. The first is that I question whether your dad has the cognition to process and retain the gist of the hard conversation you feel is your mom's responsibility. He sounds like the best approach is the one you have already chosen in telling him he "needs to get stronger"-- rinse and repeat as needed--is going to be best. He won't recall what he's been told my may hold onto the feelings associated with being told he's not coming home.

The other piece is mom. I can appreciate how difficult it is to have a parent who is in denial and refuses to be proactive around making care decisions. My dad was a very challenging PWD but at times it was my mom's denial and inaction that drove me to utter despair. She fought me getting him evaluated for nearly a decade until he was so impaired, she nearly died with him as her medical advocate and left me to make nearly all of the decisions around his care and their lives. It was frustrating, LOL, it still is. But accepting her personality honed as the baby of a huge family and in a 60+ year marriage being told what to do, made it easier to do what had to be done without stabbing her. Moms know how to push your buttons-- they're the ones who installed them after all. Sometimes I feel like a terrible daughter, too. I assure you I am not and you aren't either.

HB