Advocating for my dad

Welcome. As you know Alzheimer’s is terminal. The later stages can be brutal. Treating his cholesterol problems may be seen as something that will only prolong his suffering. His weight loss, depression and lack of interest are probably do to a progression of dementia rather than any lack of care. You ask what you can do. I think just continue to visit, and learn what you can about dementia. Has the family considered hospice. The requirements for it are different with dementia. I have attached some resources that may be helpful.

Hi and welcome. I am sorry for your reason to be here but pleased you found this place. Sadly, your situation is not all that uncommon in late stage dementia.

My father's memory has been affected by untreated sleep apnea and cholesterol that has lead to moderate chronic ischemic changes along with a diagnoses of late stage Alzheimers.

Sadly, those with mixed dementia, as your dad has, tend to progress through the disease stages at a more rapid rate than those with Alzheimer's alone.

When he was first admitted to memory care, he was very upset that my stepmom wasn't visiting and she mislead him to say she was sick and he was going to be their for a short time. She had no intention to take him out of memory care and given his wandering I don't think it would have been a good thing in the Independent living unit she selected.

Please don't hold this ruse against your stepmom. Given that most PWD also have anosognosia (an inability to recognize the degree of their own impairment) and have lost both empathy and reasoning skills, they aren't going to see a need for them to move into a facility or accept outside caregivers coming into the home. Those of us who chose placement, usually because of limited resources in the form of assets and family who are able to roll up their sleeves on a regular basis, all lie to our spouses and parents to get them into the place where they can be safely cared for. I told my dad his doctor ordered him to have a rehab stay to get stronger. Others have invented tales of termite infestations and busted sewer mains.

In the first 6 weeks he lost 20 lbs and was sent to a geriatic psychiatric ward after he spent the day back at with her place, he had a psychotic episode. I believe it was due to a drug interaction. She liked to give him CBD.

It's not unusual for a PWD to have a loss of function when removed from their home, routines and most critically their primary caregiver who likely has been providing a level of scaffolding which gives a false sense of the PWD's ability to manage ADLs.

Did you report this to his doctors at the geri psych unit? It may have been useful information at the time.

After the geriatic psych stay, he is on triple the max dose of atypical antipsychotic medication, on top of that they've added a depressant for anxiety and at night something for insomnia. Since they added on top of medications, he sleeps a lot and he has incontinence issues which they say he refuses help.

It's not unusual for geriatric psychiatrists to prescribe a cocktail of psychoactive medications. Doing this can often get a better result at lower doses which can lower the risk of side effects. The atypical antipsychotics are useful for agitation in dementia. Different individuals will need higher or lower doses depending— dosing is very individualized and there's a lot of room to up doses to those more commonly prescribed for bipolar disorder or schizophrenia if needed. It's also not uncommon for a geripsych to lower doses once the PWD is more stabilized. My dad was on Seroquel for agitation and aggression (he also got Prozac and Wellbutrin); each time a dose was added or increased he was sleepier than usual as his body adjusted for a week or so.

The reality here is that the facility has 2 obligations here— they need to provide care for your dad which means not allowing him to stay in wet/soiled clothing and they need to protect their staff from harm if he is aggressive in his non-cooperation.

I get it that the sleep apnea cannot be treated at this point but I feel that they are ignoring the cholesterol issues which have according to his dr have caused mini strokes that have impacted his speech.

It's pretty common for doctors to withdraw certain medications with long-term benefits in the later stages of dementia as the PWD's individual risk of side effects vs the benefit in a person with a terminal condition changes. When dad went into MC, we opted for a more palliative approach to his care. We prioritized his breathing and mood but dropped his statin (which caused muscle pain), BP meds (lessened his fall risk) and dropped his metformin as it caused GI issues.

But most importantly I feel like he is isolating himself in his room and he is depressed and my stepmom says its just the Dementia.

This is hard. It probably is the dementia. Dementia changes so much more than just memory. One of the symptoms I found most troubling in watching my dad in the middle and later stages was his apathy. He'd previously had all kinds of interests and was hyper-social but dementia made him withdraw. Once in a while the DON could coerce him to come out for live music but that was it. Even when mom or I tried to engage him in something while visiting it was a bust. By this stage the only thing he seemed to enjoy were food treats— a soft pretzel, milk shake, fast food lunch, coffee and donuts. Like you dad, mine also lost weight around the time he went into MC despite his love of calorie dense treats.

I tried to say that a companion might help but she dismisses it.

A companion is a great idea. That said, this is a very expensive option as the aides who do this often have 3-4 hour minimum shifts (this would have been way more interaction than dad could manage when he went into MC), a weekly minimum of around 12-15 hours and cost about $40/hour. If they're funding 2 different rooms/apartments in a facility, there might not be money available for that.

I just want him to be comfortable. I live almost 50 miles away so its quite a drive and I work. I come on the weekends and listen to music concerts on dvds and go through old family albums. My sister works also and also has an hour commute each way.

Those are great activities to do together when you visit. PWD aren't oriented to time in the way folks without it are so don't feel badly if you can't visit as much as you would like. When dad was in MC, mom and I each visited about every other day but dad would tell people "my wife never visits me and my daughter is here all the time". (we didn't have a good relationship, so this was more of a complaint than a brag)

My stepmom was my mom's best friend before she died. She's anti-vax, anti-traditional medicine and growing up with my dad leading a department in a hospital, I'm much more traditional medicine oriented. In the last 6 months since moving to memory care, he's lost the physical activities like chair volleyball, he's lost his place and autonomy and he's so depressed. What do I do?

There's not much you can do. It's hard for anyone who cares about a LO when someone else is making choices that might not make. I've been on both sides of this watching my BIL blow off my suggestion of PT for my MIL as pointless as she has a terminal condition (no dementia). BIL was an ER doc and fatalist by nature; MIL lived 6 years in a wheelchair when she probably could have walked another 5 years. She lived with them in their multilevel home restricted to her room, the hall and kitchen/den. With dad, I dealt with an uncle who was clueless about dementia despite having supported his in-laws through it and judged my every decision.

That said, if this is a marriage into which your dad entered without the mental capacity to do so, there are legal avenues you could explore. This would be messy and perhaps harder on your dad than the current situation.

HB

There are things you can do that may help. Try to see that your father is escorted to all activities in the facility if you feel he benefits from social interaction(that may or may not be true). Paying for a companion to come in and engage with him is certainly possible. It does not have to be a medical professional, just someone who visit with him. This is a question of money and whether or not he and his wife have the resources to accomplish this. Again, he may or may not want this. PWD are NOT good self reporters. I would trust the staff and his wife about his behaviors + attitude before accepting what he is reporting, if anything.

Be careful of projecting how you would feel about being in the facility and in his circumstances. He may be very apathetic and not want a lot of interaction. In your place, with the description you give of his health problems on top of the dementia, I would encourage an assessment from hospice.