Feeling guilty for getting the diagnosis

scaskey

Hi all I'm new here, I'm sorry this is a bit long. I've been providing support to my 86-year-old mother who is the primary caregiver for my PWD, my 93-year-old father. He has really only been clearly showing signs for 12 to 18 months, but he now has severe aphasia, and difficulty finding words. He is having memory issues but he knows who we all are and dresses himself and is eating and drinking. My mother has been minimizing his behavior though and doesn't see how much she actually has to help him through the day. In order to get support I insisted that she get a formal diagnosis and now I'm regretting it.

We went to the neurologist today and beforehand he asked why we were there and I explained to talk to a doctor about his forgetting things and his trouble finding the right word. He was very excited that he would now have a chance to "make it go away". The doctor was kind and addressed him directly but after giving him what I think was the MOCA? test, told us that he is moderate to severe dementia and of course there's no cure. She's ordered a CT scan first since we're not sure he could handle an MRI. She said that OT or PT might help. Now I'm regretting going because he wanted to take the test with him so he could practice at home, and it's just hitting me now that I probably didn't even need to take him, since we all knew how bad it was and I've just made it worse for him.

Anyway the grief everyone talks about is hitting me now. I know it was the right thing, but it now it's concrete. The doctor said we should be lining up memory care for the near future.

SusanB-dil

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

You know you did ok getting diagnosis, but yeah, I get it that it feels so bad that it has been made 'official'. Your mom may not realize just how much she is doing because all of it most likely started off as just giving a hand here and there and then having to increase the help in slow increments. And of course, she is so close to the situation, and just doesn't see how much she is 'scaffolding' him.

Glad his doctor was kind to him.

Yeah - all of 'this' just stinks!

Dawn C

Hi, scaskey I’m also new here, and I understand how you feel! I just basically did the same with my 82 year old dad. He really had not shown any real signs of dementia until early September them all of a sudden he was, and we hoped, but were not optimistic, that the neurologist would have good news. I also explained to my dad that the reason for the appt was to find out what was causing him to have trouble with his words and hallucinate. The Dr did explain the diagnosis to me and my Dad together, just not sure if my Dad understands or remembers.

He has been diagnosed with severe dementia, probable Alzheimer’s type, late onset. Now I’m trying to figure how to explain it to him during one of his lucid periods. 🙁 Grieving also!

And we were told the same-start preparation now for what is coming.

Emily 123

My mom forgot everything her neuropsychiatrist told her about her testing by the time we got to the parking lot, and there's no point in revisiting the diagnosis with her (it would be greatly upsetting to her for however long she could remember it), so we've never mentioned it since. ''Foggy memory'' is ok by her. Your dad will probably forget about it if it's not brought up.

It's not important that the PWD knows they have the disease, but it can be important for family so they can make plans. It may help your mother get used to the idea that his needs may outstrip what she can provide, and at least take a look around at what care options are available.

A formal diagnosis can help at times with coverage. My mom's balance is poor, and so she was able to get 6 weeks of PT as a fall risk, which helped her for a bit.

https://www.dementiacarecentral.com/medicare-advantage-benefits/

https://www.thememorycenter.com/is-medicare-medicaid-an-option-for-to-pay-for-memory-center-assisted-living/

https://alzconnected.org/discussion/58427/annual-certification-of-alz-for-tax-deduction-of-expenses