Dad diagnosed with dementia refusing to go to doctor

ctuck13

My dad was diagnosed with dementia in July and I cannot get him to go to any doctors, he doesn’t want to give up ANY of his independence, and he’s just all around hard headed and untrusting. I know I need to get legal conservatorship, but after that I’m at a loss. I dont know what to expect, where to turn, or anything. My mom died in august of last year from Covid and my brother isn’t in the picture so I’m having to do this without any help from my immediate or dads side of the family. I feel so lost and scared. Any tips/advice/words of comfort are appreciated…

M1

Welcome to the forum, you’ve come to the right place. Start with the legal stuff, you can’t do much until that’s in place, and a good certified elder law attorney can help with financial planning too. Look for attorneys at nelf.org and if he has a current will or other documents, take them with you if you can. And don’t discuss with him, just do it. Good luck, this is never easy. And btw look up anosognosia, it’s a feature of the disease. He can’t recognize that there’s anything wrong.

harshedbuzz

Hi and welcome.

Did the neurologist who diagnosed give a sense of where your dad was in the disease process? Most docs use a 3-stage model of mild/moderate/severe while most caregivers use a more nuanced 7-stage model. 

Stages of Dementia Dr. Tam Cummings

The combination of paranoia and ansogonsia can make advocating for and keeping safe a challenge. If you're at a point where he's impaired enough to need a conservator/guardian, it's best to start proceedings so you can secure learn about and secure the financial piece before that all unravels. You'll need assets for care at some point and PWD can interfere with that. My aunt's home was up for sale for past taxes at a time when she had an estate of over $3 million. Dad day-traded away over $350 before he forgot how to use his laptop. 

I know of two people who had to go to court to obtain guardianship of a PWD. My younger aunt for the older one who was sitting in a cold dark house wondering why the cable was out and a friend whose dad was making bad decisions and hoarding in a gate house on his property. Dad was already having meals and doing family stuff with them but even they were surprised by the state of his apartment. He was usually pretty chill but could get aggressive if he felt his sons or DIL were over-stepping. 

With my aunts, it was very straight forward although family was asked to sign off on the guardianship. Aunt obtained emergency and then permanent guardianship in ME and then permanent in MA when she moved her sister nearer her.

With my friend it wasn't as straightforward. He and his brother were on the same page and both respected doctors in the small town, but dad was brighter than both of them and retained a lot of cognitive reserve he used to showtime with his own medical team. Dad was even enough on the ball that he hired his own lawyer. In both cases a judge ordered comprehensive cognitive testing as part of the case. Both auntie and my friend's dad did poorly and guardianship was awarded. FWIW, the costs are paid by the PWD if you succeed. In my friend's case, dad continued to live there. He and his brother had oversight of dad's finances and dad battled mightily over the intrusion into his private life, but nothing really changed until dad's needs were such that he had to go into a MCF.

While I can appreciate feeling very alone in this situation, in many ways it is simpler to be the only child and not having someone interfering or playing devil's advocate. FWIW, my friend and his brother are about the only sibs I know who managed dementia in a parent in lockstep 100% of the time. 

HB

ctuck13

harshedbuzz, He was diagnosed at a mental health hospital, so it was a psychiatrist that gave him the diagnosis. All that is written on the sheet is "dementia with behavioral agitation." If I had to guess he's somewhere between the fourth and fifth stages according to the 7 stage model. I don't think the hospital will disclose his information to me, I tried while he was a patient there, but they wouldn't tell me anything. The only reason I know of the diagnosis is it is on his discharge paperwork. But nothing else about it was in the folder, no info explaining next steps or anything.

I talked to a lawyer that would help me with getting legal guardianship/conservatorship, and he told me I have to get statements from two different doctors stating that he is unable to manage his financial and medical decisions. I can't even get him to go to a primary care doctor, so that will prove to be impossible.... Not to mention, it's $3,500, and I have to go to court which I've never had to do before. It's so hard and scary...

M1

Ctuck, have the attorney get the records from the mental health hospital and the attorney can contact those doctors for you.  That may do it right there.  The $3500 is very reasonable, it's going to cost a lot more than that to get him taken care of.  It's money well spent.

ctuck13

M1 wrote:

Ctuck, have the attorney get the records from the mental health hospital and the attorney can contact those doctors for you.  That may do it right there.  The $3500 is very reasonable, it's going to cost a lot more than that to get him taken care of.  It's money well spent.

Oh thank you so much!!!! I don't know why I didn't think of that, myself! Hopefully it will work. I just don't have $3,500 in the bank which is why I'm stressing... I will have to save up the funds, or ask family for help.... But anyway, I very much appreciate the idea!!

harshedbuzz

ctuck-

I agree with M1 that $3500 is a reasonable price and that a good lawyer will assist in getting the signatures you need.

With my aunts, one of the doctors who signed off on her lack of competency was the court-ordered psychiatrist and the other was her PCP. I'm sure staff from the mental health facility could sign off.

With both my aunt and my friend's dad, when the judge granted guardianship, costs came out of the PWD's funds. I've never heard of a guardian not being reimbursed. 

HB

smartinesmir

I'm so sorry to hear about your dad's diagnosis and your struggles with getting him the help he needs. It can be incredibly difficult to watch a loved one go through this and feel helpless.Regarding the legal guardianship/conservatorship, it sounds like you're already taking steps in the right direction by talking to a lawyer. Keep advocating for your dad's well-being, and don't give up on trying to get him the medical care he needs, even if it's a difficult and frustrating process.It can be overwhelming to take on so much responsibility and stress alone. I found rehab for anger issues to be really helpful in dealing with my own mental health struggles, and I think it could be a good resource for you too. Here's a link I found: https://restore-mentalhealth.com/go-to-rehab-anger-issues/