My mums health seems to be deteriorating but her memory is still quite sharp? Has anyone here lost a parent from this and what can I expect to happen?
Ive read that 9/10 dont make to final stages that the prognosis is usually death by heart attack OR stroke?
All i know is that diet and excercise are crucial to her living longer with this but if she wont do either im scared she may have a stroke soon?
Also have read that vascular can be 4yrs from diagnosis but my mums been ill for at least ten years.
You're basically waiting to see which part of the brain gets hit next. I've been told to expect my husband to stay the same until he has another incident, which could be tomorrow or never. He could very well die of something else before the dementia gets worse, although having the dementia makes it harder to maintain his overall health.
His doctors never used the term "vascular dementia" when he was actively recovering from his strokes. It only came up when I was trying to explain why his stroke was having such a drastic impact on cognition, unlike other people I've known with strokes who had mostly language or physical impairments. It came up when I started talking to care facilities about the type of care he'll eventually need when I can't do it at home.
Because vascular dementia is caused by damage in varying places in the brain, symptoms will be different for each person. Because a later illness caused a "shower of emboli" (a quote from his neurologist), my husband has tiny bits of damage all over his brain. It's remarkable to observe how granular your brain's functions are. For example, a hit to a tiny piece of the right brain can cause trouble with "initiation" which is the ability to start doing something after you decide you need to do it. When you decide you're thirsty and need a drink, your body needs to initiate moving your arm to pick up your glass. Lucky for me, this part of his brain rewired itself during his recovery (or inflammation decreased and quit interfering with that part of his brain--no one is sure which). We haven't been so lucky with the language functions that some hits in the left brain took out. He can talk but can't think of the names, nouns, and numbers to put in those sentences. Verbs and adjectives are fine; nouns, almost none.
In my husband's case, his vascular dementia started with a huge blood clot in his right brain, which caused cognitive problems but didn't damage his memory at all. Most people couldn't tell in the hospital that he had any problem at all because he could speak and remembered everyone, and you don't usually do much higher thinking during a hospital visit. He has impulse control problems and can't follow simple instructions or learn new things, but stuff he already knew how to do, he could (mostly) still do. However, the cognitive impairments are a big problem--he can't live independently any more. and should definitely not drive anymore, although he doesn't believe it. We've had fights about that. Luckily, he's a law abiding guy. His driver's license expired while he was in rehab and he assumed he had to get a new one before driving but they wouldn't give it to him.
I found that books about Alzheimer's and other dementias are helpful when they talk about how to deal with a problem the affected person might have. For example, you can't reason with a person with a cognitive impairments when their logic circuits are broken. When they lose the ability to do things in a sequence (because of damage to a specific part of the right brain), you need to pre-sequence things by laying their clothes out in order or giving them fewer eating utensils. I've had to ask my husband many times, "Do you trust me?" when what he's trying doesn't work and no amount of explaining helps. Lucky for me, he remembers me and other people, so he knows who he can trust.
Books aren't much help when trying to guess what's going to happen to a person with vascular dementia. Everyone's dementia is different, but some dementias like Alzheimer's follow a general progression. Vascular dementia doesn't work like that. Like I said, you're just waiting for another incident, whether visible or silent. I try to get him to eat a healthy diet to prevent him from having another stroke or getting plaque buildup that partially blocks blood flow in the brain. He takes blood thinners to prevent another stroke; he's on the new generation of thinners (Pradaxa, Xarelto, and Eliquis), which are easier to manage than the old standby Coumadin/warfarin. I worry about diabetes, which he doesn't have, because he has a family history; high blood sugar can damage the brain too. I also have to keep him well hydrated, which is a chore, because dehydration makes his cognition worse.
One thing you need to be aware of is that when your loved one gets sick, has an infection, gets dehydrated, or needs surgery for some reason (like dental work), their level of function will temporarily decrease and they will be harder to care for. An example: my husband has no problems with incontinence except when he has an infection or right after dental surgery. Then he needs to wear the adult briefs for a couple of days until he gets his faculties back to his baseline. This was a big shock for me the first time it happened and I was alone in the house with him without briefs handy. And the first clue I had that he had a urinary tract infection was that he got thirsty and tried to use the soap dish (with soap in it) as a glass.
His capability for semi-independent living is very much determined by his health, hydration, and just plain old luck. For example, he likes to walk around the block a lot and a vocational therapist checked on him and said he's OK to do that alone, but someone has to remind him to drink up after a walk in the summer to keep him hydrated. He does fine with taking his meds by himself because he only takes them once a day, as long as it's the ones he's used to taking. He requires watching when his meds change. When the doctor adds a drug to treat an infection or something, my husband is confused and will either forget it (or remove it from his pill case because it's unfamiliar) or take too many of it.
He can do lots of things for himself as long as everything goes well. If our paid caregiver buys a different brand of a food he likes, he might skip lunch because he doesn't recognize it. If the phone rings when he's in the middle of something, he might forget where he is and usually skips steps or stops early. Lucky for us, he never leaves the oven on or microwaves things for too long, so he can safely make a snack for himself if I'm out.
She suffers from vascular dementia also, and is in assisted living. I wrote a note to the doctor so she knew mom is waiting to hear she is well enough to go home. The doctor was great! She told mom that her health has improved and she is in a safe caring place. She has activities and interacts with peers. She is just where she needs to be! It has been 3 months, and mom doesn't ask when she's going "home."
Mother has stated, 'I don't want to live like this. Your Grandmother (her Mother) didn't have this; why do I?' Then there are the statements Mother makes about going 'walk in traffic', 'just take me out for a ride in the country and drop me off somewhere, I can make it back.' The one that really, really upsets me is, 'just shoot me, so I can be in peace. I never wanted or expected to live (past seventy-five anyway) this long.'
Though Dr. Jack Kevorkian - aka. Dr Death- famously said, "dying is not a crime" Maybe he was onto something; letting a person choose to leave this level of the journey for the next level on their own terms. I've stated the following before, 'Boys! If I get to this point in life, just make sure I have a full tank of gas, some pocket cash, clothes and sleeping bag strapped to my motorcycle & tell me "go west ole-man.' That's the way I feel, my terms. It may seem rash, crude or whatever, but that's me.
I'm sorry for going way off topic here. It's just been one of those days. Please enjoy Thanksgiving with family and friends. Ours problems will still be here tomorrow.
My mother's never smoked, never been overweight, always stayed fit and active - her diet wasn't great, but cholesterol always ok - and was bustling home from work back in 1996 when she collapsed in public and was admitted to hospital. First diuretics, then beta-blockers and ACE inhibitors, then the angiotensin wotsit instead of the ACE, then they tried her on spironolactone but pulled it, then the special pacemaker, then a change of diuretic, then finally this year the cardiologist snapped her file shut and said: well, that's your lot, I'm afraid.
Two strokes, two weeks apart, and here we are waiting for our appointment at the Memory Clinic. 17 extra years of good quality of life, I've no complaints about the medical profession. I just wish they could tell me what's coming next and when.
And now I feel like a dingbat for not guessing leg edema from adenoma!
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