Neuropsych results came in

Quilting brings calm

Some of you may remember I’ve been waiting two months for my step-dads neuropsychology test results.  We got them Thursday.  Unspecified dementia, early stage 4.  Compounded by COPD (anoxia) and mixed anxiety and depression.  I think the testing results were affected by his low reading capability.  I had actually convinced myself that he had done fairly well in those tests considering his reading capability.   The doctor said that a lot of the testing showed him at average level, with a couple items ( such as delayed memory) falling below.  Some items were inconsistent over the various tests. 

Here is how the appointment went: 

Mom dithered( yes, the word fits) for days  about whether she wanted to be included in the appointment.  She was worried about any possible reactions from my step-dad to the results.  She needn’t have worried.  The doctor handed Dad the detailed results, and recommendations.  Mom and I got a two page summary and the recommendations. The doctor allowed us time to skim over those in silence.  Mom hadn’t brought her glasses.  I can guarantee you that neither of them understood what they read until they got to the actual diagnosis - the multi syllable words in every single spaced sentence was too much for them.  I told dad I would read his copy after he got done in a few days.  ( it’s not like I can force him to give it to me) 

The doctor briefly mentioned the various results, discussed possible recommendations for improving memory, and answered my questions without ever mentioning the word dementia.  I mentioned that those recommendations would apply to mom too and the doctor agreed. I also reminded both parents that they each  needed to concentrate on taking care of themselves and the doctor agreed.  My parents had no questions.   So step-dad is most likely unaware of the diagnosis.  He wouldn’t believe it anyway. I’m giving them time to absorb what they can before our next discussion about it.  They are safe in the assisted living center for now. 

Here’s two impressions: the neuropsych testing he got is a lot more intense than the MMSE test.  The latter is all that Mom gets at the neurology NP appointments. Hence her diagnosis sits at MCI while it is obvious to me that she is further along than he is, while still at stage 4 based on symptoms.  Second, the doctor agreed with me that they may not get to the late stages in their lifetime. 

The doctor sent a copy to my parents PCP, recommending some medication changes.  Some of his medications for other conditions can make dementia worse

I just wanted to give an update to those of you that might have had the time to wonder if I had heard anything. We all know the recommendations the doctor offered won’t really help much.  You also all know I’ve been dealing with these two for three  years and that my immediate role and duties don’t change just because he received an actual diagnosis.  His symptoms haven’t changed lately  except he is starting to  appear frailer while not losing weight. 

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Quilting brings calm

Victoria - let me try to answer your thoughts.  Before I do, thank you for your concern and advice.  It’s always helpful. 

The advice to concentrate on themselves is for my Mom.  She fixates on worrying about him and makes her anxiety ratchet up,   So I just keep reminding her that he’s a grown-a$& adult and that she needs to concentrate on doing things that she needs and  enjoys- such as the activities at the facility.  She calls  me multiple times daily with reports  on how much she thinks he is eating or sleeping, or  which female he spoke to in the dining hall.   She started down that road at the doctor appointment. The advice doesn’t stick, but I thought maybe the doctor agreeing might buy a couple days 

There are no real assets. 1 car in both their names, his checking account ( that I managed to get him to use up  2/3 of over the last 3 years for various bills for him and them), a joint account that the money until recently goes out of via automated bills as soon as it comes in, and the larger account that is in her and my name only.   He has a debit card for his, she and I have debit cards for hers. Both have low daily limits.   The joint account doesn’t  have a debit card.  His account and  the joint account are out of state,  I have the checkbooks and checks for all three accounts in my possession.  Their credit card has a  limit of $1750.   They recently sold their  second vehicle and I sent the check to the joint account- telling him I could now pay those additional bills out of the joint account if it went there.  I’m no longer as concerned about ‘his’ account as there is now only enough in it to pay the equivalent of 2 months of assisted living. 

I do have medical POA for both of them, and financial and legal POA for her.   The last time I asked him, he still refused to give me that for him.  There have been some ultimatums given from me to him this summer towards him  continuing  to make helping them difficult for  me.    I was advised not to try for guardianship when this all started.  I think he will still have to get worse than he is now before I could get it if  I tried since he would definitely object.   

There are 3 of us children on my mom’s side and 3 on my step-dads side. I’m the only one doing anything    Once my Mom dies, or goes to a SNF on Medicaid, I will do something similar to what Wilted had to do for her boyfriend and let the appropriate agency deal with him and his three kids.  Either would qualify for long term care Medicaid and the other spouse could keep the money as they are under the community spouse cap in Illinois.  She would get part of his monthly income if he was the one going to SNF.  There’s not enough cash for either of them to be able to go to memory care 

You are correct that it’s been and continues to be a slow grind and there may not be a pleasant ending for either of them.   I’m just not mentally and emotionally up to dealing with him about the POA. My full siblings recognize  the difficulties of dealing with him, his children have abandoned him at this point. It doesn’t help my psyche  that my spouse has a lot of health issues and I’m needed at home, and the stock market is screwing  up our retirement royally.  I’ve curtailed my visits to the assisted living center to the ones that are needed to reduce my stress. 

mommyandme (m&m)

Quilting, thanks for the update!  I’m glad you got them in and have some info that may help you with your future plans. The understanding of what’s going on can be helpful for me since all this is mostly dealt with by trial and error.  In other words, knowing something…anything for that matter…is helpful for me.  

You work very hard for both of them. They are truly blessed to have you! 

LicketyGlitz

Gratz, Quilting, for getting them in. You have been so on top of a rough situation with such a level head. I'm hoping for some family appreciation in your life for all you have and will continue to do, but in case that ain't coming your way, I'm impressed as heck with 'ya.

Quilting brings calm

Lickety- thank you.  In return,  I have found your posts and the links to your blog both necessary advice and enjoyable to read.   I didn’t think anyone could make us all laugh about this life while also showing how much you loved both your parents… but you managed it beautifully.   And we all definitely need the laughter!

Edited Monday to add: 

mommy- the trial and error thing is really grueling.  It’s hard to try to match my parents’ situation with the experts descriptions in articles, so then it’s hard to apply the advice given there.   In addition, I get frustrated with all the repetition and then I can’t follow the advice to just redirect.   Mom is using  incorrect or vague  words when trying to describe physical issues. example: diarrhea when she really means constipated or that she couldn’t get to the bathroom in time. Dad never admits to there being anything wrong.