Resentful and guilty

Hi Walkmom, you might want to make another appointment with an elder care attorney to discuss Medicaid requirements in your state. It sounds like you may be wanting to pursue placement at some point, and financially planning for that (especially if you are not in the private-pay bracket) requires at least five years of planning.

It's hard. You don't say how old you or he are, but your daughter probably has a job and family, and would have difficulty providing the day-to-day care. I recognize that you also had difficulty but did provide care for a parent, which is praiseworthy because of its rarity. I certainly understanding feeling resentful when you don't have the support you provided for a previous generation. I don't have any answers, but I do understand.

Welcome. Everyone always says it’s the dementia talking not your loved one. I think if there were issues with the relationship before dementia it can be really hard to distinguish between dementia and just a difficult personality. That’s what I struggle with anyway. If you think you might want to move him to a facility at some point, you should keep in mind there can be a waiting list. I think you are on the right track doing things without telling him. I found that mom listens to her doctor much better than me. Maybe if you gave the doctor a note he could talk about letting you handle the medication. If he doesn’t use a patient portal you might want to set one up. It’s a great way to communicate with the doctor without him knowing.

I am sorry that you are in this situation again. I think you should discuss with your attorney future placement of your husband in assisted living or memory care. Find out how payment would work with your financial situation. Tour facilities without him and put him on a wait list. If there is an Oasis Senior Services in your area, call them. The one in our area is excellent with placement and touring assistance. They also will help in home care. Many caregivers’s health suffers. You need to take care of yourself. Put a plan b in place now for his care if you are unable to care for him. Read The 36 Hour Day. Finally, speak to his neurologist about medication or a geriatric psychiatrist. Best of luck.

@walkmom

Hi and welcome. Your post reminds me very much of my mom's situation when dad was initially diagnosed.

My dad was unpleasant as a baseline for me; we never got along but he was generally nicer around mom until his dementia. The thing is dementia is about so much more than memory loss— there are losses around executive function, empathy and social filter very early on. As his dementia worsened, he was controlling and unpleasant. These losses may have happened long before the diagnosis and are part of why the relationship was strained.

He's not going to admit to his dementia or discuss it with you. He likely has anosognosia and can noy appreciate the degree to which he is incapacitated even if he knows he's got memory issues. And he's certainly not going to be empathetic about how this is impacting you.

For the meds, can you have them put into a pill packet at the pharmacy? Have them do yours as well so he doesn't feel singled out and tell him it's how the pharmacies do it these days.

I would encourage you to sit down—alone— with an elder law attorney to discuss Medicaid planning as you may need to place him for your own mental health. Getting him on medication to dial back his mood could also help. I suggest a geriatric psychiatrist for this unless he's very aggressive in which case a geri psych stay via the ER is your best bet.

Good luck.
HB

This is a good link that explains anosognosia.