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(sigh)
yesterday i talked to my parents on the phone. their dementia is becoming unignorable...seeing huge differences between who they used to be and who they are. i'm having to come to terms with this change, to accept the fact that they will never be the people i remember again. this is who they are now, and they won't stay these people very long either.
my dad and i were talking about his family. he was very clear about some things--lol, the fact that it's *very* likely that my grandfather was still married to his first wife when he married my grandmother. that's what my dad's half-brother, fred, always claimed, and we have no legal documentation that my grandfather and his first wife were legally divorced--and it stands to reason. they were dirt poor. then my dad asked me if i had ever met his father. that stopped me. he was seriously asking me this question. my grandfather died of lung cancer before my parents were even dating. they knew each other--my mom was at the funeral because my dad was her boss. but my grandfather died in 1952. my parents got married in 1955. and...um...i was born in 1967.
so no, i never met the guy. none of my siblings ever met him either. a couple of my cousins did, but not us.
it's so weird, to miss my dad while he's still alive. my mom is doing better than he is, but she's on the same road. it was one thing, to see them aging and slowing down. but this (they both have vascular dementia, which is like heart disease in the brain, and caused by the same things: high fat diet and a sedentary lifestyle)... this is going to kill them. but before it does, it's going to take them away from us, bit by bit.
my dad and i were talking about his family. he was very clear about some things--lol, the fact that it's *very* likely that my grandfather was still married to his first wife when he married my grandmother. that's what my dad's half-brother, fred, always claimed, and we have no legal documentation that my grandfather and his first wife were legally divorced--and it stands to reason. they were dirt poor. then my dad asked me if i had ever met his father. that stopped me. he was seriously asking me this question. my grandfather died of lung cancer before my parents were even dating. they knew each other--my mom was at the funeral because my dad was her boss. but my grandfather died in 1952. my parents got married in 1955. and...um...i was born in 1967.
so no, i never met the guy. none of my siblings ever met him either. a couple of my cousins did, but not us.
it's so weird, to miss my dad while he's still alive. my mom is doing better than he is, but she's on the same road. it was one thing, to see them aging and slowing down. but this (they both have vascular dementia, which is like heart disease in the brain, and caused by the same things: high fat diet and a sedentary lifestyle)... this is going to kill them. but before it does, it's going to take them away from us, bit by bit.
no subject
After working with patients and having my own family affected by dementia, I have a few things to offer, if I might.
Different people will react differently to your parents' decline. Arm yourself with information now, and get your siblings and other family to do the same. Vascular dementia has a relatively predictable course, with some possible complications. Knowledge is one of things that will best help everyone cope.
I don't know how close you are to your siblings, or how close they are to your parents, but no matter what, you will need to support eachother. Having a support group that is strong and includes your family (and friends) is very helpful in mitigating some of the stress. It means the difference between shredding a solid family and bringing a distant one together.
Make decisions about care now. Make sure your parents have a Living Will that designates one person to make health care decisions when they become unable to. If you haven't already, talk to your parents about their Do-Not-Resuscitate status. If they should need it, do they want to be intubated? At some point, many people in advanced stages of dementia require a feeding tube for nutrition and hydration. Do your parents want this? This stuff is awful to think about, but the sooner your family understands your parents wishes, the easier it will be when those decisions present themselves.
Also know that as the disease progresses, your parents will become unable to care for themselves. They may become hostile and aggressive. They will continue to forget more and more, and start to make up stories to fill in the blanks. While reminding them and reorienting them can be helpful now, there will come a point where arguing a memory is more painful than it's worth. It's really really hard to let go of their identity, but I found it helpful to remember that all you can do is work to be happy, and to keep them safe and happy. To me, the facts aren't as important as the emotions that a memory evokes. When my great-grandmother told me for the eighth time about the dolls she was going to make and the room that her husband had finished last month (he's been dead and gone 15 years), and asked me if I had ever met Bridget (my mother), I smiled and said "Yes, she's a wonderful woman." and for the moment, we were both happy.
no subject
my dad is doing worse than my mom. he's actually having TIA's. he doesn't seem to know that, or isn't accepting it, i'm not sure which. he says the mri and ct scans of his brain were "clear." what he means by that is that they didn't find evidence of concussion--he has had 2-3 episodes now, in which he has blacked out and fallen down, conking his head. a year and a half ago it was a *bad* one, and until june, when i was there taking care of my mom, we thought his memory and cognitive problems were post-concussion syndrome. not so...he had all the scans and stuff done in july, so we know what's going on with him. he thinks he suffered another concussion in march or april, because he blacked out in church and hit his head on the hard wooden pew.
my siblings and i are reasonably close, i guess. we talk and get along, anyway, but i don't see them all that often because they're in michigan and i'm here. that adds another complication to *my* situation--being isolated from all of them while dealing with this whole thing. they have it in their faces more than i do, but they also have each other to talk to more often. my two sisters started saying a year ago that we were going to have to start thinking about moving m&d out of their house. my brother and i had reservations about that. this summer we all found ourselves coming to the same conclusion: they will have to move sometime soon, but for now they are very functional in their everyday lives (mainly because my mom keeps my dad on track--he really fell apart when she had her back surgery).
they *do* have a living will. i believe that any/all of my siblings and myself are authorized to make decisions in the event that both of them are no longer able to. they are devout catholics, so their decisions regarding feeding tubes and DNR orders are kind of determined by that. however, they also watched my sister die of meningitis in a state with no brain death law, so they *get* (or they got it then, anyway) that sometimes you have to stop medical treatment when things are hopeless. the thing we're having trouble with right now is that my dad is *extremely* resistant to the suggestion of moving out of their house. if it gets to the point where we have to move them against his will, we're going to have a huge fight on our hands, and the move might just kill him. awful...
so you said that vascular dementia has a predictiable course. do you know where i can get good information about that? i found the alzheimer's association when i was in michigan last june, and got a bunch of info from them, but alzheimer's disease is a different thing altogether, so i'd imagine its progression is different too.
thanks again for writing. your insights are very, very helpful.
no subject
So, it has also been my experience that people with VD tend to suffer more 'psychiatric' symptoms than AD. Your parents may likely experience depression, hallucinations, delusions, erratic behavior, wandering, or aggressive behavior at some point. Not everyone with the disease gets these symptoms, but they're possibilities to be discussed.
Um, I would say that if you google "vascular dementia" you'd get a ton of pretty good info.
http://www.helpguide.org/elder/vascular_dementia.htm
had good info and good links.
So, it's good that they have a living will, but know that when it comes down to it, a lot of families have big trouble agreeing on a plan of care, especially if not everyone is in the same area. Keeping your mind and communication open is really important.
The decision to move them out of their home is a really difficult one. There are cases to be argued for both quality of life & happiness *and* for safety and quantity of life. Moving out may cause some depression and speed his decline, but he could also easily leave the stove on and burn the house down with both of them in it. And, contrary to popular belief, moving won't actually kill him. The death of your mom is much much more likely to affect his health than moving. If he is able to keep busy and keep doing the things he likes to do, an assisted living facility or other long-term care could be very good for both of them and give them years of meaningful, happy life. If your mom is more amenable to moving, she may be able to get your dad to see the light. You may also be able to give some control back to him and negotiate the terms of moving out - he can set the date, they can choose a place together.
The Alzheimer's association has good info on housing options and tips to help preserve function. Also, I don't know how they are being medically managed, but there's good evidence for blood pressure medication and low-dose aspirin or coumadin in preventing further strokes and TIAs.
Let me know if you have any questions, between H and I we can get you more info.
As far as your dad's CT and MRI scans being "clear"... Doctors are notorious for not explaining everything. It's easy to assume that this has already been explained, you're just adding on, when often patients didn't get very basic information in the first place. It sounds like your dad is pretty stubborn, so this may be simply a problem of denial, but still, it could be ignorance. So, having a good discussion with him about what they were looking for on the scans, and that while he did not sustain any major damage in his falls, that doesn't explain away the reason he fell in the first place. Give him fact sheets, things to read. He will probably still put up a good fight, (wouldn't you?) but I'm glad you and your siblings are all in agreement about this. In my opinion, it's better to move them too soon than too late.
I don't envy you this, especially given your family history, I gather.
((hugs))
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one thing that's really tough for me, about losing them in this particular way, is that "the people i remember" as my parents......weren't the greatest parents in the world. but they *were* parents. a few years ago, while going through my divorce, i let go of *most* of the anger and hurt that i felt toward them, for not being the parents i needed them to be. but i sort of consoled myself with the idea that i could have a relationship with them *now*, based on who they actually are (or were, 5 years ago). it might not look like what i *wished* my relationship with my parents had been, but it would be *some* kind of meaningful relationship with my parents. for awhile that worked--i actually started enjoying them quite a bit. but that only lasted 3 years or so, and now i'm having to let that go as well. not entirely--of course, as long as they are alive, i can have a relationship with them. but it can't be an adult-adult relationship now. i can't expect the things from them that i would expect from other adults. my relationship to them now will be more like their long-distance caretaker. that weird person who calls them on the phone and quizzes them about their lives every so often.
thanks for the virtual hugs. i actually felt them. :-)
no subject
(Anonymous) 2005-12-30 12:12 pm (UTC)(link)No stranger, but truer words could be spoken, and I can totally symp with that!!
K.