I’m at an impasse

jduran041

I am extremely frustrated! My dad refuses to comply with the doctor’s referral to see a neurologist. He’s taking memantine, which is for dementia and is in denial. My brother and sister have their own families and issues. I’m the one that’s closest geographically to my parents, so it all has fallen on my lap. However, everyone seems to be nonchalant, and I feel that I’m going to have to be reactive rather than proactive because of what is outside of my control. My family has never been the best at planning or being proactive. I’m open to any tips, suggestions, etc.

M1

Welcome to the forum. He's not in denial, he has anosognosia: this is a feature of dementia that prevents him from being able to perceive that he's impaired. It's pretty common. He truly thinks he's fine.

A lot of people with dementia refuse evaluation. There are a few treatable things that should be ruled out, but beyond that it's debatable whether seeing a neurologist makes much difference. There are some dementias that respond differently to certain medications. But if you can't get him to go, you're not alone.

There are legal steps you should take separate from the medical issues. Someone needs to hold medical and legal power of attorney for him, be it your mother or one of you kids. He shouldn't be driving (or drinking), and at some point he should have limited access to finances and the internet. You need to plan financially for the future should he eventually need memory care. A certified elder law attorney can help with the legal and financial planning aspects, look at nelf.org. Most families have to learn workarounds to accomplish the other necessary safeguards as very few people will give up their autonomy voluntarily. You have to be prepared to make and enforce decisions for his safety without his consent.

Good luck, i hope this gives you some ideas and that your family will come around. It's hard to sit on your hands and watch a train wreck unfold, but there may only be so much you can do.

jduran041

Thank you for the helpful information. It’s funny, I used the words “train going off the rails” when describing the situation to someone yesterday.

harshedbuzz

This is a frustrating situation all around.

Did the PCP start the diagnostic process ahead of the referral? I've survived dementia with dad and 6 years later am starting with mom. Her PCP has done a quick screening (MMSE), ordered bloodwork to R/O other conditions that can mimic dementia and has ordered an MRI. She did well on the MMSE despite her memory and word finding issues but the blood tests did show a recent Lyme Disease infection which is being treated. MRI is at the end of the month.

I'd make the neurology appointment using your contact information. Depending on where you live, it could take 6-12 months to see a neurologist who specializes in dementia. I called the memory center which diagnosed dad; they'll call me in 2-3 months to schedule a first appointment 6 months out from that.

It's likely your dad isn't in denial. He likely has anosognosia which is a condition in which a PWD is unable to recognize how impaired they are in their day-to-day functioning. Even if he does recognize wordfinding issues or a poor memory, he likely doesn't appreciate the losses in executive function or cognition and how much he is impacted. The medication his taking may help him function better for a while so it's great he's got that. TBH, unless your dad qualifies for and opts to treat with the new infusion medication, there isn't much neurology can offer beyond potentially sussing out what kind of dementia he has.

There are actually more urgent pieces to keep him safe to be addressed now. Is he driving? Do you and his PCP feel this is safe and appropriate? What's his car look like? Dents and scrapes can indicate poor spatial processing and impaired cognition. Would his insurance policy cover a person who takes a prescription medication for cognitive impairment/dementia? Dad's policy did not.

Does he have his legal paperwork in order? Does he have a durable POA? Are you his primary agent for medical and financial decision-making? Ideally, you would see a CELA to get this paperwork in order. I, personally, would not accept being POA if I shared the position with another nor would I accept being POA for medical while someone else handled the financial. That tends complicate things and destroy relationships; given the nonchalance of your sibs things could get ugly. If you can't get a POA, you may have to make a case for guardianship which could be extra complicated if the sibs don't support your efforts. You may have to wait for a shoe to drop to act on guardianship.

Is dad safe at home? Does he live alone? Things to look for are the contents of his fridge and pantry. Is their spoiled food? Canned goods that are out-of-code or leaking? Are his pots scorched or dishtowels singed? Is he eating a proper diet? Is the house tidy without signs of hoarding? Is he taking all the medications he's prescribed as directed?

And then there's the money. Dementia is an expensive disease— you need to be proactive in protecting assets he may need in the future to fund his care. Is dad still managing his money prudently? You want to check to make sure his bills are being paid on a timely manner— especially those that aren't routine monthly like property taxes and insurance. Watch for auto-renew charges. Are there any odd withdrawals? Check his mail for sketchy charity appeals; if he gets a lot he may be being targeted as an easy mark. The phone and internet can be dangerous for PWD who often struggle to recognize phishing and outright scams. Dad managed to lose $360K day-trading in the early middle stages of dementia when mom was fighting me on an evaluation. You don't get a do-over on that kind of loss. Another consideration are the dead-beat relatives some families have. Be on the lookout for nieces looking for "loans", grandsons who want a co-signer and even siblings who would "take their inheritance before it's wasted on dad's care". Any of these issues could disqualify dad for Medicaid funding if he outlives his assets. Dad's MCF runs $100K/year and in-home care 24/7 is even more— it's pretty easy for folks to outlive their funds. A CELA can explain things in your state vis a vis programs and funding and may be able to create a trust to mitigate impact.

HB

jduran041

This is a comprehensive posting (thank you) and I greatly appreciate your time and experience with this. Some of the jargon you mentioned I am unfamiliar with and am learning as I go along, will research the terms. Will create a checklist of what you just sent over, but most of this stuff I haven’t done yet. I appreciate you pointing out the time it takes to get a neurologist on the case; I had no idea! Thanks again for the info!

Quilting brings calm

Take over the job of making appointments and taking him to them-such as with a neurologist. He might be amenable to going when the appointment date actually comes. Especially if you don’t actually give a detailed explanation of why he’s going. ‘Today’s appointment is for your memory. We are going to see if this doctor has a better medication than the PCP to fix it’. Fibs help. If he starts balking a week before- you can reschedule. Dementia specialists actually do understand this particular problem.

Dreaming1972

We had a similar problem with my dad. He knows he will be asked a lot of questions that he cannot answer or remember the answers. We learned we couldn't tell him about the appointment until the day before or the morning of, otherwise he would complain for days. In addition, we repeated told him from the minute we left the house to the waiting room that it's just a "follow up" appointment and that he doesn't need to know or do anything.

H1235

I think you are probably seeing from the above posts that one very important thing you can do is educate yourself on all this craziness. Not just about dementia, legal matter, Medicaid, but also your dad’s finances and all the symptoms he is having. There is just so much. My brother is a procrastinator and in a bit of denial. It can be so frustrating. As you start digging in don’t hesitate to post specific questions here. Even if you find you are forced to wait for the train wreck, if you arm yourself with knowledge you will be better prepared to act when the time comes.

If he won’t go to the neurologist and the pcp has diagnosed him with dementia would your dad give you hipaa rights to talk with the pcp? Could you get recommendations from the pcp about driving, living alone etc. Maybe something like this would create some urgency in your siblings. Good luck

livefree2

https://alzconnected.org/discussion/69196/i-m-at-an-impasse

I’m new to this forum but not new to some of the problems you are facing. Every comment so far gave you very very good advice.

All I can add is to look into what your local county offers for elder care services in your community . They are an invaluable resource because local people will have more of a connection for you.