Trying to get help for father when mother won't and in denial

smlc2

My husband and I are concerned about my father who obviously either has dementia or Alzheimers.   His doctor did a scan and just said it looks pretty typical for an older person.  My mother (his wife) is in denial.  She leaves him alone all the time and gets frustrated when he doesn't help with the basic things he used to like feeding the dog or taking out the trash.  He forgets.  He forgets to eat.  He forgets a lot of things.  He asked me if I went to school in my hometown and if I finished high school (I have a masters degree).  He starts watering the trees and forgets about it and my mother finds it had been running for more than 24 hours.   He repeats himself a lot and he is talking more and more about his childhood.  He said it was almost clear as day, the last time we visited.  He has good days where he may mention a current event but it's very limited.   He also gets very frustrated.

So my questions are 1) What does this sound like?  2)  How can we get a diagnosis when no one is willing?   3) How can we get some help?

Thank you for any insight.

MonicaG

My sister and I noticed things like that with our mom.  She was over taking medication. I took her to the doctor and went in and mentioned that my mom has been forgetful lately. The doctor did a mini mental exam and was shocked, as was I, that she did so poorly. From there, she recommended a neuropsych exam. The neuropsych diagnosed her with Alzheimer’s. So maybe you should tell your dad that he needs to see the doctor for a wellness checkup, make sure you communicate with the nurses or doctor even beforehand to let them know your suspicion. You’ll probably be referred to a neurologist, depending on when you can get an appointment. But maybe you should start out at the internist and they’ll do referrals from there. I wish you the best of luck. This site is a great support tool.

M1

Welcome to the forum smic2. Yes, it sounds like dementia, and im sorry. Since his doc did a scan, s/he probably also did labs to rule out treatable causes, but it's worth checking to be sure.  It will help to get familiar with the seven stages (Google it) to assess where he is in the disease progression.

Your mother's denial raises the question of her own cognitive issues, unfortunately this is pretty common too. In early days it's important to get legal issues dealt with, and you or a sibling probably need to have durable and healthcare power of attorney for both of them. Make sure their wills are in order, and get a handle on finances: if either of them needs long term care, will they need to qualify for Medicaid? A certified elder care attorney can address all of this. It won't help with the day to day frustration and sadness, but it will help you stay in control as much as you can.

There are many generous and experienced caregivers here who share expertise and sympathy. Read a lot of threads and you'll learn a lot. Your dad is lucky to have you in his corner. Maybe you can steer your mom to the forum also. Good luck-

harshedbuzz

smlc2 wrote:

Hi and welcome to my world. I had a very similar scenario with my own parents with some very significant consequences. Dad put down his changes to "a natural part of the aging process" and mom lapped that up with a spoon. I suspect my mom's denial was the intersection of 3 issues. Firstly, she was the frog in the warm pot of water on the stove who was too close to the situation to see the obvious. Secondly, she did not want to know a diagnosis that would rock her world by taking over her life as she knew it. And finally, knowing dad and I did not enjoy an easy relationship, she defended anything he did out of a misguided sense of loyalty. Any pleas to get dad evaluated or stop his access to the car or investments was met with "you just don't like your father". YMMV.

Figuring out a way to get you mom to accept the need for a diagnosis could continue to be challenging unless there is some emergency that she can not ignore. That is where your plan B comes in.

So my questions are 1) What does this sound like?  

It sounds very much like dementia of some sort. Dementia is an umbrella term; Alzheimer's (the most common) is a specific kind of dementia. 

2)  How can we get a diagnosis when no one is willing?

You might need to either wait for a crisis to implement your plan B or hope that your mom will trigger an evaluation when his behaviors become such that her hair is on fire.

Dementia is a diagnosis arrived at, typically, by eliminating other conditions with similar symptoms. A scan is generally ordered to rule out a lesion, although further into the disease the brain will show significant shrinkage. That said, specific to dementia, most scans are a bit like looking for your car keys with Google Earth. It would be useful to know if the doctor ordered bloodwork to rule out vitamin or hormone deficiencies that can mimic dementia. 

If you know how the PCP is, you could contact them with a bulleted list of what you are seeing. The doctor can't communicate with you unless you have dad's permission, but they can take your observations into consideration and perhaps do a screening and referral at the next appointment. That said, some doctors really struggle with diagnosing a disease for which they have little of value to offer and will avoid referrals unless pressed.

(My story is that I noticed personality changes in my dad as early as 2005; he became darker and less pleasant. His loss of social filter meant other people were seeing a side of him that he'd previously only shared with me. By 2008, he was exhibiting significant confusion and memory loss. We were at an event near where his beloved younger brother lived and where they'd had a business together and he had no orientation to the place- he even got lost driving in a community where he'd lived most of his adult life. It was also in this era that he engaged in unchecked day-trading and lost just over $350K before he forgot how to access his computer. Things continued to become worse and by 2014, I was about the only friend or family member still interacting with them as a couple and then only to check on my mom. In 2016, while they were staying in Florida for the winter I got a call from the local hospital that my mom had been admitted in liver failure. I knew she'd been feeling fatigued and unwell, but daily calls with my dad the previous. 2 weeks were about how she was napping and that they were divorcing or that she needed a psychiatrist. At no point di he mention her being the color of a school bus.

I stayed with them until she was out of the woods and came home to craft a plan B. I found the best available clinic near me and researched facilities in the event mom predeceased him.)

I was able to put plan B into play when dad had a significant psychotic episode. My parents were back at their beach house, so mom loaded him into the car and drove him 3 hours to the hospital affiliated with the memory center. He was given a working diagnosis of Alzheimer's in the hospital and a referral for a complete evaluation which resulted in a mixed dementia diagnosis.

TL;DR You may need to wait for your opening. Be prepared when it comes.



  3) How can we get some help?

You kind of can't until you get your mom on board. That said, if dad goes to the hospital for some other reason, you might suggests a neurology consult while there. 

What "help" are you looking for?

There's not a lot of help for dementia. My mom and I have discussed the period when I was certain he had dementia and she was actively fighting against it recently. She does not regret avoiding the diagnosis as long as she did. She claims she was happier not knowing even as she was still the primary caregiver for a difficult patient. And even knowing the dad's WKS was treatable to some degree with Thiamine supplementation and life style changes- she feels the Alzheimer's was going to get him anyway. She has a point. 

If your mom is neglecting dad- perhaps leaving home when he shouldn't be, the nuclear option is APS. This should be a last resort.

If it's getting dad on medications to improve function, reaching out to the PCP as I explained earlier might work.

If it's getting mom on board, it's hard to say. Even after dad was officially diagnosed, my mom struggled mightily to accept the changes wrought by the disease. It was almost as if she felt she could bully him into being more capable.

This short read helped her accept and change her approach. 

12 pt Understanding the Dementia Experience (dementiacarestrategies.com)

HB

Thank you for any insight.

jfkoc

What you can do is to talk to their Dr. It is fine for you to do this but if you want a two way conversation you will need a HIPAA release.

A diagnosis of AD follows a protocol which includes ruling out things as simple as B12 deficiency. You can read about this diagnosis online.

I would certainly include your concerns about your mother.

After the conversation with the Dr you have the task of getting them to an appointment, You very likely will need to make up a reason for the appointment ie insurance requirement or drivers license.

In the meantime snoop around to find out if all of their legal ducks are in a line.

I know this is not easy but you can do it and we are always here to lend our support and share information.