Need guidance

I’m sorry but I disagree with MMLinCA. A person with dementia is often not able to recognize their symptoms or limitations (anosognosia). This is itself a symptom of dementia. People with dementia also suffer from extremely poor judgment. To continue to allow them to make decisions for themselves that they are not capable of making can put the person with dementia in very serious danger. My mom believes she is perfectly capable of living in her home alone. If I had not moved her to a facility 2 years ago, there is no doubt in my mind she would not be here today. I could not bear the thoughts of losing my mom in a house fire she started because she forgot something on the stove. In my opinion this is neglect. I also stopped her from driving and took away her access to finances. No one wants to take independence away, but to keep them safe it’s a necessity. I have a letter signed by two doctors stating she is not capable of making decisions for herself. She is only in stage 4. People with dementia almost age mentally in reverse. Sure you listen to them and consider what they want, but you don’t let a child do things that are dangerous. If you have a DPOA you have an obligation to keep them safe. Honestly as my mom’s daughter I feel I have an obligation to keep her safe (even from herself).

MandyL you might want to talk with her doctor about medication for her anxiety. It sounds like she is sun downing. Would your dad allow someone to come in and help with things other than caregiving? I’m thinking hire a maid to do some cleaning and laundry, hire someone to mow the lawn and clean the gutters.

@Amanda60

Hi and welcome. I am sorry for the reason you need to be here but pleased you found this place.

Yours is not an unusual situation. Often people with dementia also have anosognosia and are completely unaware of their own degree of impairment even if they own up to having a poor memory. It's also common for older people to assume the changes associated with dementia are normal— they are not. Sometimes, too, a spouse-caregiver (looking at my mom here) is like the frog in a warm pot of water set to boil who is too close to appreciate the danger.

The parent who refuses to see a doctor is a challenge. While it's really useful to know they type of dementia in terms of what to expect and avoiding certain meds, for an 83-year-old it's less critical once you have ruled out treatable conditions that have similar symptoms. A PCP can order these tests— bloodwork for hormone and vitamin deficiencies and potentially Lyme Disease (mom had this and a 14-day course of abx reversed many of her concerning symptoms). Mom should probably have an MRI or CT scan to rule out lesions as well. The PCP may have already done this; can you check the electronic chart in the patient portal or ask?

If she's sundowning (agitation in the late afternoon/evening) and stuck by anxiety, citalopram might be a bit like taking a knife to a gun fight. She might do better on an atypical antipsychotic to dial back the aggression and nastiness. A geriatric psych is best for this. You'd report the behaviors you're seeing via a portal or note to the doctor ahead of time rather than throwing her under the bus.

Home health aides are expensive. Your dad may be loath to spend $30+ hour to get someone in and give him a break. This is especially true if your mom would balk at having a "babysitter". Placement would probably be more protective of dad's health which would mean he could be her advocate. Some couples move to a AL/MC facility so they can be on the same campus.

You and your brother need a robust Plan B. The odds of you inheriting your mom's care are probably higher than the oft cited 33% because of age, stress and cancer. Do your parents have the necessary documents for you/brother to take over mom's care if dad dies or become incapacitated? This would avoid the time and expense of obtaining emergency guardianship through the courts. If dad did pass before mom, you can expect a significant drop in her abilities as spousal caregivers usually provide massive amounts of scaffolding that helps the PWD function day-to-day. The other piece to the POAs is that your dad needs to name a different agent than mom as she shouldn't be asked to act on his behalf.

I respectfully disagree with MML's take. Capacity is a tricky thing. There does come a time when a PWD needs to be protected from their reduced ability to make sound decisions. PWD no longer have the short-term memory and the executive function to "learn" as a young child might. If you are POA you have a legal obligation to act prudently.

HB

I'm sorry your family is going through such a difficult time. It sounds like you're already doing a lot to support both of your parents, and having your siblings share the responsibility is a huge help. From what you've described, it may be time to start exploring additional support, even if your mom is still independent with daily tasks. Early memory care services, respite care, or an assisted living community with memory care can provide structure, reduce your dad's caregiving burden, and improve your mom's quality of life. Many families wait until there's a crisis, but planning ahead often makes the transition much easier. It's also important to remember that caregivers need care too. Your dad's health and well-being matter just as much, especially after his recent cancer treatment. Even a few hours of professional help each week can give him time to rest and recover. Wishing you and your family strength during this challenging time. You're not alone, and reaching out for guidance now is a positive step.

Your strategy worked for a woman in my support group.

It didn't work so well with my mom until I presented it as: "Dad's care is killing you. When he succeeds, my plan is to have him placed at XYZ skilled nursing within 24-hours (true) while I make the arrangements to place him in the first MCF that will take him. So, if you want to pick his MCF, best to place him now."