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This is something that I posted on Facebook late last year, shortly after my official diagnosis with dementia.  I’m copying it here, without edits.

Here’s the big news.  They’re 99% sure that I have something called multi-infarct vascular degeneration, with possible inflammatory components.  (I hope I said that right.)  That means that I keep having little strokes, and every time you have a stroke some brain cells die, just like when you have a heart attack some heart cells die.  It can’t heal but the brain can reroute itself (unlike the heart), that’s why my speech came back after the ‘big’ stroke in ’10, but brain cells often are missed when they’re gone, so you, and I, see the difference.  Also, because I have rheumatoid arthritis and I’ve had inflamed blood vessels before, that might be a second reason why my brain cells don’t always get enough blood.  I’ve always been more complicated than most.  :)

So every time I have a stroke — and some of them might be silent strokes, I won’t be aware of them at the time — I get a little bit dumber.  My memory gets worse, I might have trouble finding words or doing math in my head.  I already don’t want to practice law in the sense of being solely responsible for something important, because I don’t want to forget something.  If you ask me a question and I answer you, the answer is right.  The intelligence is still all in there, it just doesn’t want to come out in an organized way sometimes.  Especially if I’m tired or stressed.

And because my brain is working harder than it should, I get tired a LOT.  I still have the rheumatoid arthritis, and fibromyalgia, so I get physically tired and I have pain, but I’ve learned my limits (more or less).  The same issue is true now with mental effort.  If I’m awake, I slept well, etc., you probably won’t see anything different.   If I haven’t slept or it’s been a long day or I didn’t have a nap, I might seem a little slow.  If I’m not doing so well, I kind of hide.  That’s been true with the physical things too.  So if you leave me a message, I will get back to you, but it might not be immediate.  If I don’t call back in a reasonable amount of time — call me back.  I write EVERYTHING down but things fall through the cracks.  Sometimes I turn off my phone and FB, for an hour or an afternoon or sometimes a day or two.   But now that I’m out of the closet, as I call it, I don’t have to do that as much as I did before, because if I make a grammatical mistake, or even say something more seriously wacky, you’ll know why.  Being in the closet is hard, in any way.

Also, I also don’t express myself quite as accurately as I used to.  So I try to stay out of FB debates, because you, my friends, are very smart and very aggressive and if I say something slightly wrong, you and YOUR fb friends will jump all over me.  It keeps happening, so I know it’s not just my own paranoia.  I came in 12th place at Worlds in college.  I couldn’t do that anymore, not every day.  Sometimes I miss the point of a FB thread and I say something weird.  But I like debating and I used to be good at it.  So if I do stick my toe in, please don’t shoot me down.  On the other hand, please don’t treat me like I’m made of glass.   I never was before, and I’m not now.

Dementia not only affects memory, but as it goes on it affects emotions, self-control, executive functions (like decisionmaking and prioritizing), etc.  I’ve seen all of these in the last year or two.   If you raise your voice — not you guys, but some clerk or other pushy person, I will probably just walk away, because I can’t fight back, especially not in Hebrew.  Or I might cry.  Haven’t done that in public yet, but it’ll probably happen someday.

I want people to know this now because I know that it’s starting to show sometimes.   It’s been seven years since I went to a neurologist and said, ‘Something’s not right.’  I had figured it out then, because my grandfather had it, and I’m really good at Google and I can read medical journal articles.  And also because I do need a little bit of help.  Mostly emotional and religious — I really do want you to pray for me, or send ‘happy, healing thoughts,’ as RivkA* used to say.  There are no atheists in a foxhole, or something like that. You can also be in touch sometimes and see how I am.  I’ve been really isolated in the last year or so because I didn’t tell people, and if I don’t go out of my house, I don’t speak to adults.  I can go a week or more not talking to anyone other than teenagers and a dog and a parrot, and that’s not good for me.   Makes me feel sorry for myself and unloved.

On a practical level, I can do what I have to do, and I WANT to.  I need to be normal.  (Okay, if you’re a professional masssage therapist or a gourmet cook, I might make an exception.)  But if I forget to call you back, or lose something that you gave me, or miss your simcha,  it’s not that I don’t care or I wasn’t listening or I’m on drugs.  I’m not running on all four burners all the time, physically OR mentally.  As I said, I write things down like a fiend but there is a limit as to how many balls I can keep in the air at once, and most people who have this diagnosis aren’t single parents.  I love my life, my kids want to stay with me, and so I don’t want it to change any faster than it has to.

As I said, the name of the game here is to keep it from getting worse, or at least to slow it down.  If it’s been seven years and I’m still like this, my chances are good that something else will get me before I get really incapacitated.  On the other hand, if I do have a larger stroke, I COULD be gone tomorrow, or reallly messed up.  Nobody is promised tomorrow.  I’m promised tomorrow less than most.

People with this usually get worse very slowly — or they die or become incapacitated, if they do have another major stroke.   I hope not to do that.   So I’m dieting, and walking, and taking aspirin and other anti-clotting drugs.  Have been for years.  They’re being extra-sure that the rheumatoid arthritis is under control.  I might start taking blood pressure meds, mine is borderline, but in my case they don’t want to take any chances.  And other than that, life will go on as before.  Nothing has changed, except that I decided to share it.

So I probably won’t dance at my grandchildren’s weddings. I’ve had a lot of time to get used to that.  But if I can go to my sons’ weddings, and meet my grandchildren, even if I can’t take care of them when they’re little without help — I can deal with that too.  I really want to be able to cook for them and if someone has to be sure that I don’t burn the house down, so be it.   Like RivkA, I have a 20 year plan, and like RivkA, hers was optimistic but not completely off the wall.  She didn’t make it.  I hope that I will.

If you want to be on my ‘committee,’ as I call it, to help me when and if I need more practical help, please let me know. If you’re in Efrat, tell Yael Valier (Goldstein), and if you’re in Israel, tell Caralee Harwood.  Both of them are my FB friends.  Caralee is the closest thing I have to a sister, so she’s the CEO.  I’m the chairman of the board.  Yael needs a title,  we need suggestions — Local Czar, perhaps?   Tell them, or me, what you’re good at and feel comfortable with taking on.   If you’re in ch’l, then just pray for me and check in once in a while, I really can’t think of anything else right now.  Later on, I might need rides and meals and things like that, so you will all get your turn.

Yes, I still drive, with my doctors’ OK, but I’m a little leery about driving after dark, especially outside of Efrat, and I know that I will get lost if I go to places I’m not familiar with.  (Yes, I know I need a working GPS.  Mine broke and I’m looking into alternatives.  If you know of a good deal on a stand-alone unit, those are the easiest to use, so send me deal sites.)  But think of me when you’re going somewhere.  I love theater, I love smachot and they’re good for me, I like restaurants that my kids won’t like and movies that they won’t want to see.  If you’re out alone with your husband, I don’t want to be a third wheel.  I used to be married, remember?  And if you drive but don’t have a car — we can usually work it out.  Maybe I can drive to you, and you can take over.  Sometimes I’m fine to drive if I know that there’s another driver who can take over on a long trip.   Etc.

My kids know all of this, but please don’t ask them how I am, or how they are.  Their needs are being addressed.  They’ve known this for a long time too.  You don’t live with a single parent with memory loss AND physical limitations and not see that Mom is different from other Moms.  We have coped as a family, and we are continuing to do so.  They’re a bit in denial, and apparently that’s a good place for them to be, so leave them there.   Hopefully by the time they have to deal with a scary reality, they’ll be adults.

If you still have questions, please don’t be afraid to ask. I love questions about being an Orthodox Jew, and being a settler, AND having dementia, because I want the information that’s out there to be accurate.  If you know anything about Alzheimer’s,  some of the symptoms look similar to early stage Alzheimer’s.  I DON’T HAVE ALZHEIMER’S.  And no news IS good news, although you can ask how I am (just not the kids).  OK?

Oh, and one more thing.   Don’t be afraid of me.  I don’t bite and it’s not contagious.  Cancer is sexy, dementia is scary as hell because losing your mind is a lot scarier than losing a body part, AND as of now there are no happy endings.  RivkA and I talked about that all the time.  There is research, and if there’s a clinical trial that applies to me, I will know about it.  I signed up for that too.   But for now, it’s a death sentence, but with a very indeterminate prognosis in terms of time.  Life is a death sentence with no clear timeline either.  (Did I say that already?)

When people are scared, or don’t know what to do or say, they run away.  Every dementia patient has stories of friends and family members who disappeared. I tend to see the good in people, and our tradition tells us what to do and say in difficult situations, so I hope that I’ll be luckier than most.   I’m still me, just a SLIGHTLY less fabulous version of me.  Just keep that in mind and I think we’ll be fine.  Deal?


5 Responses

  1. glad to see things are working now. enjoy your trip, i love the colors.

    God Bless,
    joe

  2. #2
    Debra Walk 

    Looks like the blog is off to a great start!

  3. #3
    Donnamarie Baker 

    I love this Karen!

  4. #4
    kathy 

    Very awesome blog
    I really love your attitude

  5. #5
    Liz 

    I love this and love you ,too!

    Liz

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