** Obligatory Note ** I am opening this thread out of need. I would ask that nobody take the opportunity to come sailing in to chide me or anyone contributing for what they say. The SDMB is not my Mom’s physician. I am aware of that. It is a community where we are thoughtful and offer anecdotal evidence based on personal experiences. Every person is different. Nothing offered here will be taken as medical gospel. Nothing discussed here is meant to be inferred as medical gospel. Keep the snark related to that path of thinking out of this thread please. Remember- this OP is NOT being posted into General Questions. *** Thank you **
My mother is 85 and has a preliminary diagnosis of Vascular Dementia ( V.D. ) It will be confirmed by assessment in the coming days but the CT scan and MRI don’t lie.
Before I go into great detail on the last few months and then years of her life, I am asking that my fellow Dopers share any first-hand experiences living with someone as V.D. emerged in their lives.
I’m wondering if my FIL might be experiencing this also. He was always a very active, very sharp man, but in recent years, there’s been an obvious physical and mental decline. He’ll turn 91 this month. I don’t know if he’s ever had a stroke, but he has had cardiac issues for years, and at least 1 heart attack. He’s also got weird BP - sometimes way high, sometimes way low - and recently, he’s been falling a lot, and not remembering it.
We just spent the last couple of weeks around him and my MIL, and while they’re both aware of their declining health and abilities, they are in denial and they insist they’re fine living on their own. Unfortunately, we’re 800 miles away and they will not be persuaded to move closer to us.
I will mention this to my spousal unit and maybe he can suggest it to them as something to ask their doctor… if they can remember. Whether it is or not, dealing with declining parents is really tough - especially when you remember their active, vital days. My mom is 87 and so far, so good, but we never know, do we?
My mother was diagnosed with vascular dementia back in late 2003, based mostly on excluding other likely causes. She had in retrospect been showing symptoms of dementia long before this was recognized by anybody.
It seems to me that there’s now at least a whole lot more of a support system, for dealing with dementia in general, than there was at the time. I hope so, at any rate; and wish both of you and your mother/FIL the best of luck.
It seemed to me that my mother’s judgement went before her memory, and that her memory failures often had more to do with a loss of ability to understand time and distance than with a loss of facts. She remembered me and my sister, for instance, and appeared to know where we lived, but to have lost all understanding of how far that meant we were from her, necessary travel times, and how that worked out in terms of whether we could show up at a given moment. – I could go into other stuff, but not sure what or how much you want at the moment.
My mother had vascular dementia the last few years of her life.
First, a LOT of people are going to mistakenly think she has Alzheimer’s - not so much medical people but everyone else in your life. This is because a lot of people are unaware that there are different types of dementia besides Alzheimer’s and, particularly in the early stages, they are not interchangeable.
As @thorny_locust noted, this dementia is not so much a matter of forgetting facts as deteriorating judgement. Mom never forgot who we were, or where she was. In the early stages her judgement (technically, “executive function”) deteriorated to the what I’d call the “two martini level”. She wasn’t drunk, but her judgement was affected by about the equivalent of two alcoholic drinks. She lost inhibitions - which was at times hilarious when she told dirty jokes, at other time cringe-worthy when the situation was not appropriate. She gradually lost her ability to plan things out and execute that plan. She could still understand many things in isolation, but stringing them together became more and more difficult.
In my mom’s case - which may or may not be relevant to your loved one - putting her on supplemental oxygen helped a bit. It was not a fix and eventually she got to the point we couldn’t let her cook any more because she didn’t seem able to keep track of the lit stove burners, the pots, and her oxygen tubing simultaneously and that could have been a very, very big problem.
But we didn’t have to worry about her getting lost in her own home, or wandering around outside lost. I’ve met people with Alzheimer’s who seemed to exist in a perpetual lost state, making them fearful or belligerent or both. Mom didn’t have that. She might get frustrated and angry because she was no longer able to do certain things, but she knew where she was and who she was with. This may or may not be the case for other people with vascular dementia.
Eventually, I’m told, dementias tend to coverage on complete disability but mom died of heart failure before she got that far.
Not necessarily, by any means. Every case will be different.
Nowadays it’s called Multi-Infarct Dementia. Depending on where in the brain the infarcts (tiny areas of cell death) occur, the symptoms will be different.
My grandmother had vascular dementia. We got her some in home care but after she fell and broke a hip, we moved her into a Catholic facility where she could attend Mass every day, important to her. The facility was awesome. They offered independent living, assisted living car, and an intense nursing home right on the grounds. For several years, we were able to take her out to lunch or to family events until it became too much for her. These days we couldn’t even think of the cost of such a facility. It has changed hands and been sold twice since.
She started with in-unit help twice a week and slowly deteriorated until we moved her to assisted living, and on to the nursing home. All in all, she lived there for six years. Near the end, I was with her in the nursing home and she turned to me and asked “Patty, why am I still here? Why doesn’t God take me home?” She was 86.
At that point, everyone was Patty to her. It was my mother’s name. But most of her mini-strokes (as we were told to call them back then) were in the memory part of her brain. She got hooked on drugs for a bit with her broken hip because the pharmacy she had used for years and years was not tracking her refill requests and then she said we thought she was a hop-head. Well, she was, but she wasn’t aware of it. She would take a pill, forget she had taken it, and take another. Mom and one of my aunts figured out something was up and demanded a full workup (Mom was nursing trained, though not practicing). It was the full workup that pointed out the real problem.
She was, to paraphrase her own wording, a bag of bones in a wheelchair, before she passed away. Her moments of lucidity just moved further and further apart. I’m sorry to tell you, it can be a very cruel disease.
My father, who as a PHD EE held an early patent for the very MRI process (the timer, specifically) that diagnosed his MID, was in this group. We were lucky in many ways- we set up the legal helps(POA, Living Will, mutual bank accounts) prior to diagnosis and he moved from one coast to the other so I could manage him. Over the course of five years he progressed from living independently to an adult care home to an assisted living that had initiated the process to move the the nursing care unit when he died of pneumonia. He recognized my sister and I the night he died.
This process is where I learned to accept the dementia and NOT say “I just told you that”. Plus the staff at the AL had some neat distraction strategies I use to this day. As a scientist Dad was infamous for his lack of tact and social skills (I actually asked his neurologist if he was on the spectrum and she said of course). The MID changed that- he was actually LESS inappropriate and exhibited much more social insight. I joined a support group but found myself helping the newbies. Support came from my family and social workers. The early part of the process was the most difficult…
Hmm, reading the descriptions, this may be the medical name for the issue with my mom. She has not yet been diagnosed with dementia, but I’ve been told variously that she’s had numerous microstrokes, and that a rather large fraction of her brain is dead, with some chunks completely gone. I suppose that’s because the body tends to clean up dead tissue.
She mostly has memory issues at this point. She’s also frustrated at not being able to do things that used to be easy. She’s currently living in her own apartment with a home health aide.
The frustrations for the person with any kind of dementia are the heartbreakers IMO. The best message (proved over time) is that it passes- as the dementia progresses. Dad moved to my area shortly after an 83 year old in Ca ran down a bunch of people at a farmer’s market. He had been driving until the move- but I never let him have the keys out here. (He was recovering from a compression fracture). Later he was looking around inside his car as I was driving him to a dentist appointment and remarked that he used to have one like that, they are good cars. Towards the end there was a time when my husband was doing early stroke recovery in the nursing rehab unit attached to Da’s AL. Dad said “He’s very strong, he’ll get better”- and then made me cry when he said “I’ve lived too long”.
I could always cheer him up with a chocolate bar.
Thorny locust, I see this a LOT in women. It seems (Haven’t done any searching for citations, just anecdotal from 37 years of taking care of women) associated more with AD. However, sites for the small infarcts of MID vary, and most of my father’s were cerebellar and midbrain. Anterior brain involvement is more likely to affect social interactions, judgement, impulse control etc and a little bit of motor. This is where the support system gets important, to help you not take her behaviors personally.
And an earlier diagnosis would have been really helpful in knowing not to take her behaviors personally. Once I figured out that that wasn’t her but the disease, although she’d gotten much worse by then it was in some ways easier to deal with. – It was harder to figure out because it wasn’t a total personality change, but an exaggeration of negative traits because her kinder and more social parts were no longer able to keep them under control.
She did eventually also develop a good bit of short term memory loss. But up until the last few months she was still capable of presenting entirely normally for short periods of time to people who didn’t know her well; though sometimes obnoxiously.
– This probably applies to people with multiple types of dementia: but she did her best to hide it, probably partly because she didn’t want to be treated as a person incapable of making her own decisions and partly because she didn’t want to have to go into a care home. Those are actually quite rational reasons, but she did eventually become really unable to care for herself, and there were a couple of incidents near to the time when she did agree to go into assisted care that might have come out much worse than they did. – the attempt to conceal symptoms was sometimes quite clever; she admitted to vertigo (which she had some genuine problems with) and got a microwave, because it would automatically turn itself off instead of possibly starting a fire as a pan forgotten on the stove would have. She said she needed to do that because if she was taken dizzy in the middle of cooking she’d need to lie down and might not be able to get up in time to rescue the pan. In retrospect, I think it’s almost certain that she’d realized she was forgetting to turn off the stove, but was unwilling to admit to that. She also switched to reading only short pieces instead of full-length books, and blamed that on a vision problem; in retrospect I think there was a stage at which she could remember well enough to follow a short story but not well enough to follow a novel. While she did have some eye troubles the diagnosis didn’t seem to explain the sort of problem she was claiming.
My grandmother had vascular dementia. She had strep that turned into rheumatic fever in the days before penicillin was invented and it damaged her heart. They think this is what caused the subsequent infarcts.
It was a very slow but steady decline. My mother feels that she was already starting to slip slightly even before I was born and that I never knew her at her best. When I was very young, she would be able to go on outings with us but as I got into late elementary and middle school, her confusion and odd behavior grew more and more and she became mostly homebound. She kept having more and more tiny infarcts. She often forgot my name and couldn’t really hold a conversation. Then she started going around half in her pajamas. And then came the wandering. She’d leave the house and get lost and terrify everyone. My grandfather was trying to take care of her by himself with the help of home health services and really did not want her to leave home, but the wandering was getting dangerous and she couldn’t ever be left unsupervised. My parents never left us alone with her when we visited, even when we were teenagers.
And then eventually she had to go into a nursing home because the cognitive and physical decline was just too much for him to manage anymore. It was probably a year or two past the point it should have happened, and that left few options for what home they could get her in because it was really an emergency admission at that point. She lasted maybe another year at that point and died when I was 19. My whole family regrets immensely how it was managed in hindsight. They felt they should have planned better and not gotten backed into a corner.
Needless to say, strep throat is taken very seriously in our family. Who knows what could have been if they’d had penicillin available in the 1920s.
Hi all. It’s been a rather immersive and complex week. I’m SO grateful for these posts, the more people who share their particulars, the more education and understanding comes my way. Doesn’t help my helplessness and anger but helps understanding. Which helps. ( ha )
The CT revealed at least 2 Infarcts. Not new ones, a few years old so they think. Right anterior artery and central artery crossing over from left to right side.
Also, classic blood vessel narrowing causing dementia. So, several different brain issues.
She’s in a superb Rehab facility. Medicare cuts her off on the 25th and she’ll come home. Going to try to afford to keep her there but that may become financially impossible. The painful part will be if she knows she’s not going to be living at home when we do have to move her, if it comes to that.
Every day reveals fresh info and with it fresh stressors. Parenting a parent just sucks.