New to the group: Dad diagnosed with MCI, what now?

lellmaker

First time posting here, glad to have found this group! My dad is a widower and lives alone. In the past few months, his memory and cognitive skills have noticeably declined. Primary care doctor referred us to a neurologist and my dad scored 20 on the MOCA. My dad was very agitated by the appointment, said he didn’t trust the neurologist, and called it a “bunch of voodoo”. Dad is a widower and lives alone. I live about 20 minutes away from Dad. I have an autistic four year old who requires a lot of care, so I have limited time to spend helping my Dad. Moving Dad in with us is not an option, he has always had a temper and been difficult and it would not be sustainable for me or my child. I’m an only child, so no siblings to help with Dad. I’m feeling really overwhelmed and looking for advice on where to go from here. The only move Dad would consider is to a CCRC in independent living, but I don’t think they will accept him with MCI. We went for a tour of a CCRC near us and the lady who gave us the tour called me after and said he would not pass their cognitive assessment. Dad does not want hired help to come in to his home. He doesn’t want to get the further testing recommended by the neurologist. He wants to, in his words, ‘ignore it until it goes away’. Any advice? If he continues to live alone, at some point it will no longer be safe. He is making it very difficult to plan for this. As his only child, if he continues to live alone, will I be legally liable it gets to a point where he hurts himself or others? Are there resources anyone can recommend to help me navigate this?

SusanB-dil

Hi lellmaker - welcome to 'here', but sorry for the reason.

If you do not hold DPOA nor even HIPAA accesses, you may not be legally liable. HOWEVER… I am not a lawyer by any means. Best to do is check with a CLEC (elder specialist lawyer). If you think he is not safe, you can call social services on him. I do agree that you already have your hands full, and please do not take on the massive amount of caregiving required to care for an elderly dementia patient.

You mention possibility of him hurting others… Is he driving? You may want to disappear the keys next time you are there. If he asks, you could even 'help' look for them. Driving with impaired cognizance is one of the most dangerous situations, as they could hurt themselves or an innocent party. Also, especially with a diagnosis, should something happen, insurance would probably not pay.

You can also call the alz line - 1-800-272-3900

H1235

Do you have DPOA? If not would you be able to get him to sign one. Could you present an assisted living facility as independent living (I know it doesn’t seem right to be dishonest)? Is he safe to live alone? I have heard many doctors avoid the word dementia at first, meaning he may be farther along than you’re being told. If you have DPOA and he is not safe to live alone, then you need to to make things happen. You also need to get a handle on finances, what can he afford, are bills being paid? Somewhere in these posts I read that if someone has a dementia diagnosis and is in a car accident there could be problems with insurance coverage. There is a hot line associated with this website and your local commission on aging may also be helpful. These boards hold a wealth of knowledge and experience and are a great source of information or just a place to vent.

harshedbuzz

@lellmaker

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

Sandwich generation? You're club sandwich.

A couple aspects about dementia that are impacting your dad. Firstly, he likely has some degree of anosognosia and is unable to comprehend that's he's in any way compromised or impaired. This isn't the same as denial and to keep hammering away on the point will only serve to make things more difficult.

It's pretty typical of PCP to tiptoe around using the terms dementia and Alzheimer's and often neurologists will initially diagnose MCI at a first appointment with a plan to revisit at follow up in 6-12 months.

MoCA isn't the most robust of screenings. Your dad is right on the edge of the line at which one would expect a PWD to be. I was able to get dad into a doctor for further evaluation "siding with him" and saying he deserved a second opinion.

Another thought is that dementia is about so much more than a lousy memory. Other symptoms might be a change in mood, a loss of empathy for others, apathy and loss of executive function and reasoning ability. Rule one of Dementia Fight Club is to not try to reason with a person who has dementia.

The way I see it, you have 2 options. I would absolutely consult a CELA about laws in your state first. You could attempt to obtain guardianship and make the decision to move him. The court would likely order a neuropsych evaluation ahead of the hearing. If he's truly on the cusp of dementia, he may be OK for a time in a hospitality model AL so long as he isn't exit-seeking.

Assuming you are not his POA, and therefore could be held accountable for his actions, you could wait for a crisis.

HB

PS I have had a dad with dementia and a 4-year-old on spectrum— there's no way I could have managed both at the same time.

mabelgirl

You should imlo always do what’s best for the family as a whole, not just for one individual.

I would try an AL for your dad that has a memory care unit he could eventually move to. My mom moved to one and at first all she needed was someone to bring her medications to her and remind her for meals. She was left to do the activities on her own or walk the grounds as she wanted. She’s now reaching the point of needing more care and will probably transition to MC soon. The AL gave her a sense of independence in a safe environment, she was not a flight risk as AL is not locked. If Dad won’t go for that, you’ll need to seek guardianship. Prayers for ease of resolution.

NizhoniGrrl

MCI is not technically dementia, although everyone with dementia started with MCI, but everyone with MCI does not get full blown dementia.

My mom was diagnosed with MCI probably around 2011. My father really scaffolded her and she clearly could not keep up executive functions on her own. She lived well in Independent living for several years with medication management only. I had to manage her finances, lightly at first, and all of her scheduling (Dr appt, etc). Over time I had to go from giving her an allowance to freezing her credit, but it didn’t happen overnight.

She only recently moved to AL, and with the support she gets there (bring taken to meals, helped with dressing, meds twice a day) she is doing better again. So, I guess I’m saying with just MCI he probably could get established in Independent Living and then add services as needed. He might do better without the stress of keeping up a house, preparing meals, etc. This state of MCI could plateau. It’s not predictable.