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Typical with VD?
Posted: Tuesday, June 2, 2020 1:37 PM
Joined: 5/29/2020
Posts: 5

Hi! A little background before I ask my question. My mom has BPD and has refused a referral to the neurologist. She had a stroke on April 26th where she checked herself out Against medical Advice before they performed an MRI. Her primary has told us she feels like she has dementia previous to the stroke but the stroke advanced her dementia to what is probably considered the mid stage. Her functional ability is better than her cognitive. 

Because we don't have any guidance from a neurologist and her primary will not answer any specific questions we have about her potential Vascular Dementia (just saying she would be happy to refer her to a neurologist, perhaps she just doesn't have the anwers) my sister and I are uncertain if the things we see are typical or not.

For example, my  mom has gaps in her short term memory. She may not remember something I did with her yesterday but can remember that she went to the store with my sister 3 days ago.  Also, she seems to be progressing more rapidly than I expected. Last week during her bath she was able to handle almost all the steps alone but this week I had to give a lot of instructions to help her along. She either would say "What's next?" or she would repeat the thing she was doing over and over, like rinsing her hair until I suggested gently that she move on.

She has had several episodes of loss of time and place, asking about her child hood home when she was uncertain if she lives with me (she has lived with  me for 5 years prior to this)  At times she can play her favorite card game with some errors but others she can't remember ever playing it. 

I guess because the memory issues are so patchy it seems odd to me. She can build new memories it seems like, she knows since her stroke we have been having coffee at a dock in town a lot and will ask about that but can't remember any of the names of her kids if she isn't looking at them. So, is this normal? Is dementia just this confusing? We are working blind here as far as what is actually going on. Her "Diagnosis" is based on CT scans and her behavior. She will never see another doctor than her primary, she will never do an MRI and may never do another CT scan at this point, she may never take any other medicine besides the 4 she has taken for years (yes, she counts then and knows the way they look), even antibiotics are hard to get her to take when she was in her full mental state. She is just too fearful of these things. She is 81 and her BPD adds a complicated layer to her care so any advice is welcome. 

TIA, Missy 

Posted: Tuesday, June 2, 2020 2:00 PM
Joined: 10/9/2014
Posts: 1091

Welcome MissLou.  I'm sorry to read about your mom's situation. I just wanted to confirm that with BPD, you are referring to Borderline Personality Disorder. If so, I know that you really must have really dealt with a lot. Your mother is so fortunate to have you helping her. 

So, did the doctor diagnose her with Vascular Dementia?  Yes, the symptoms vary from person to person, but, from what I have read, there is generally a stepped down progression, instead of gradual continued progression.  But, with my LO, she had both.  Perhaps, because she was initially diagnosed with VD, but, later with mixed with AD.  

In the early days she went from running her own household to needing around the clock supervision and help with ADL's, even with toileting, within a few months!  I'm not sure if others have that rapid of decline or not. But, she also lost her mobility really early and was in a wheelchair within 6 months of diagnosis, though, it was not thought to be caused by any single stroke event. She had very poor balance and could not coordinate her limbs well. 

I think that fluctuations in memory and abilities is common, based on what I saw.  Some days, I would think things weren't so bad, but, the next day, it would be very apparent that they were. Due to the severity of her symptoms, we focused on keeping my LO as comfortable and content as possible. She has received excellent care in her MC and medication for anxiety and depression has been incredibly helpful in helping her be content. 

Once my LO went to the primary who diagnosed her, she never learned another name of anyone, not the neurologist, the psychiatrist, orthopaedic doctors, therapists nor any resident in the AL or MC.  She never learned how to do another thing, EXCEPT, she did learn to propel herself along with her feet in her wheelchair. She was quite good at that. That was one of the last things that she stopped doing too, before she was bedridden. 

I have asked so many questions about how dementia works. It's still such a mystery in many ways.  I think you'll get other responses here that might help. I'll look forward to seeing how things are going. 

Posted: Tuesday, June 2, 2020 5:16 PM
Joined: 2/6/2018
Posts: 295

My Dad, with moderate stage VD and AD, had fluctuations just as you describe. Sometimes I would think there was a huge fast progression but then he would surprise me later with amazing short term memory and acting like he was near-normal. For a while, I thought it had to do with sundowners and time of day, or not feeling well physically, or being stressed, but I never really could nail down any pattern. It was just lots of ups and downs in terms of cognitive ability and a slower forward progression when taking an overall big-picture view. The difference between his "good day" and "bad day" could be quite dramatic, as you describe.
Posted: Tuesday, June 2, 2020 7:45 PM
Joined: 5/16/2017
Posts: 596

IMO no behavior associated with VD, AD or other dementias is ‘odd’.  The brain is being destroyed + variations in cognition + memory are just part of the syndrome.

The only caveat I would mention is if there is a drastic + dramatic decline that could indicate a UTI or stroke.

It is a waste of time + effort to try to figure out the whats + whys of their behavior...I learned that after much worry that we should be doing more to help my mom.  It lowered my + my family’s stress levels a lot as soon as we accepted ‘it is what it is’ + tried to roll with the punches of dementia + manage her behavior instead of chasing a diagnosis that even if correct, really doesnt change much.

Posted: Tuesday, June 2, 2020 10:32 PM
Joined: 6/12/2016
Posts: 1043

Read as much as you possibly can. Books, articles, posts here on these pages. There is a lot of good information available. I wish you the best.
Posted: Saturday, June 6, 2020 12:18 AM
Joined: 6/5/2020
Posts: 18

Hi Missy: You and your sister are doing great.  You have lots of questions and would like some answers.  What is happening?  What will happen?  Why is each day different?  Would medicine would help her?  Would tests?  Would another doctor?  What are we supposed to do?

One caregiver's class I took suggested:  "A Modest Goal for Caregiving:  To guide your mom (in this case) through days that are as safe, calm and pleasant as possible."  Notice that the modest goal doesn't say anything about doctors, hospitals, tests or medicine.  Yet, as a responsible caregiver, you are asking, "Am I doing enough for my mom?  Would she be better with those things she refuses to do?"

I have been able to convince my husband to seek treatment and medication though linking something unpleasant (like going to the neurologist) with lunch out afterwards, etc.  

Doctors have no definitive tests.  My husband was first diagnosed with AD with a little VD thrown in for good measure.  A year later, the neurologist thought that maybe he had VD with a dash of AD.  This year, I think his symptoms probably line up with FTD.  What the heck? No drug will cure dementia; the ones that are prescribed may slow the progression of symptoms, make the person less anxious and so forth.  Read what you can stand, take caregivers classes where you'll make friends with others, and take care of yourself.  Don't worry; you've got this!