May 9, 2009

A few lines on Dementia

Some versions of Picks disease are inherited.  (There is a family in Italy that can trace the path of the disease down their family line for 500 years.) And sometimes Picks hits one person in a family but everyone else remains untouched (except for the changes that come about due to the caring for the one).  My mom thinks that my dad's situation falls into the latter category. 

My dad's dad lived well into his 80s and was knocking out crosswords like they were child's-play up until the day he was taken to the hospital. My dad's mom is starting to slip a little mentally, but once you pass 85, I think that's often to be expected. And she's still the social butterfly she always was. None of my dad's cousins or aunts or uncles or grandparents have or had any form of dementia. (And he has no siblings.  So we can't make comparisons there.) So it's quite likely that my mom is right. Perhaps this is an isolated event within our family. Perhaps my sister, and myself, and my children won't get it. ... But then again, it's hard not to consider the possibility that we will.

I've written two poems recently. One is about taking a walk with my dad and how special that was to me, even though he wasn't really there. And the other is about losing several things at once and wondering if this marked the beginning of my end.


I hold his hand as we walk.
I am walking not with who he was,
    all of that is gone,
not with who he is,
    who is he when he cannot speak?
    cannot make a decision?
    cannot respond to his body's needs.
I walk with who we are.

I cherish who we are.
He is my dad.  I am his daughter.
In all our frailties
    our relationship gives meaning to our walk.

Children of Dementia

When you misplace things
    do you fear
not that you will never find it again
    but that you have entered upon that road?
Do you see
    in a missing note,
    a misplaced camera,
    a forgotten meeting
signs of greater loss coming,
no longer crouching in wait
    but now stalking
    wrenching a memory away here
    a modicum of your personality there?

Which is worse, that you can't find your keys?
or that this might be the key to how your end will come?


  1. Wow Thanks for sharing. I assume that is you and your dad in the picture. Do you have a picture of you walking with him recently. That would be cool if you did.

  2. i have a picture from about a year ago of us together. but it's pretty much impossible to get him to sit still for a picture now. no one other than me carries a camera around when we're walking and to walk with my dad means walking waaaaay behind everyone else.

  3. Meg, Did you write Children of Dementia? I'd like to repost it for my sibs, if you don't mind. It's been June a year ago since losing my mamabird to Alzheimer's/ The loss is inconsolable.

  4. My Gramma didn't get Dementia until she was into her nineties, and only passed away at 96.

    I remember a particularly harrowing incident for me a few years back. The night previous, I had come home and rushed into the apartment in some distress, and threw my keys down in the kitchen to attend to a "Personal Matter" :)

    Anyway, next day, I'm about to head out, and I'm looking for my keys. For some reason, the apartment I lived in had a lock on the INside of the main door, and ... ok, it's locked, so I've locked myself in with my keys, where are they ...?

    After tossing the apartment for what felt like several hours, I finally remembered my previous night's distress, and throwing the keys ... so they must be in the kitchen somewhere, but ...

    And then I saw the toaster. It has nice, wide slots for doing the occasional bagel, and I thought, nah, couldn't be! As I peeked inside the slot, and behold! Keys!

    Point is, there are all sorts of things that freak us out and cause us to question whether we're losing it. The most comforting thing is, I can still remember what I was doing earlier this morning if I bother to think about it. When I can't perform that little built-in check, THEN I'll get sad.

    I do hope they have a fix for this before I get much older, though.
    Eyesight and brains: two things that .. I don't want to lose.


  5. yes. i wrote it 3 weeks ago after misplacing my camera (which i still haven't found) my keys (which i found after 2 weeks) and a few other things, all in one day.

    please feel free to share it. :-)

  6. what bothers me, about the camera in particular, is that i distinctly remember going into the girls room and rescuing the camera because i didn't want anything to happen to it and they had been using it to take pics of the cat.

    but i can't, for the life of me, remember what happened next.

    i assume the camera is in the house somewhere because the very next morning i realized i didn't know where it was, and i had taken it from their room at about 10 at night. but after 3 weeks, it's still missing! did i put it INSIDE something? i've looked through everything i can think of. it's quite frustrating.

  7. You are one caring, sensitive and talented woman! Keep sharing.

  8. Wow! Beautiful....what a wonderful poem, it captures my fears is hard for others to grasp that, what will happen to my kids, who will take care of me.... My mom was only 52 when she was diagnosed with Pick's. I don't know how much worse it can get. She is around 75 pounds, curled up in the fetal position, can only sip ensure a few times a day, and just now ....10 tens later, got her first pressure sore on her bottem. She has no idea who anyone is, and cannot communicate...ah!! to be trapped inyour own mind....I am scared!!! Amanda

  9. Very profound and sweet words, Meg.

  10. Meg, your poems touched my heart because the words are so real to me. Thank you for sharing. Thinking of you and your family as we share the same journey, Kim.

  11. i thought it might.

    my dad definitely had picks by the time he was 50 but he wasn't diagnosed until he was 56, i think. i'm 40 now. that means that in only 10 years, i could be gone. that's pretty heavy to think about. my kids will be in college. and i've already seen how my husband responded to my dad's sickness and i'm a little worried he'll be the same way toward me. (insisting that my dad's actions were deliberate and with malicious intent.) which would leave my mom to care for me, and she's already been through so much, or my kids, who would miss out on being young adults and on going to college if they had to care for me.

    it's a scary position to be in. i don't dwell on it often, but it does come to my mind enough that i try to think out what i should do to help make things easier on my family should the day come when i no longer have a mind i can control. it also puts a different priority on the things that i want to do with my spare time. i want to focus on things that will be memory keepsakes for my kids (taking pictures, putting movies together, writing things down). and i wonder at what point i should start giving up some of the things that don't fit into that (like non-profit work that i do). :-\

    then i laugh and think to myself, "what if you change your whole life around to plan on losing it at 50 and you end up living to be 90 with all your wits about you. wouldn't that just take the cake?!!!" ;-)

  12. i think it helps so much to know that there are others out there who understand what it's like. lots of people know that we're going through something. but very few understand.

  13. your poems moved me to tears. and they help me to understand something of what it's like for you - I have not walked in your shoes, but you have given me some precious insights into where they pinch. thank you.

  14. Thanks, meg! I know the feeling.

  15. Right now, I can't find my cell. I don't have a clue. It's a bad weekend to lose it because it's Mother's Day weekend, and I know my children will call, but now I can't talk to them because I can't find my phone.

    I don't even know where else to look....

    Earlier this week, I lost it in the backyard while mowing. Searched all over until I found it. I knew it had to be there because I hadn't gone indoors yet.

    The time before that when I lost it, it was missing for over a month. I only ran across it by accident. Like I said, I don't have any idea where to look for it now. I've looked all the reasonable places, and all the unreasonable places. I even searched the backyard again, knowing it's not there because I already picked it up from there.

    Yes, quite frustrating.

  16. Thank-you for your beautiful words. You write so eloquently and from the heart. I especially liked your poem about walking with your Dad. I truly understand... Keep writing Meg.

  17. i put a quote in the church bulletin for tomorrow from the shack and i was thinking about it in terms of what i've said here. here's the quote:

    "To the degree that your fears have a place in your life, you neither believe God is good nor know deep in your heart that God loves you. You sing about it, you talk about it, but you don't know it." (William Young)

    It strikes me that I don't *fear* getting Picks. It's more like seeing an oncoming storm and preparing for it. For all I know the storm will swing south and hit Denver instead. But since I can see it from my window, it makes sense to be aware of it, watch it, and prepare for it as much as I can. If it swings past us, then no loss. But if it hits us, then we'll at least have gotten ready for it. But if we run around haywire fearing the storm and not preparing, or over preparing, or just plain obsessing and not living our lives because of it, then the storm has become our focus and, in some sense, our idol. It pushes all that matters out of our lives and becomes our ultimate focal point. I don't want Picks to ever be my focal point. (Of course, if I do get Picks, one of the early signs, ironically enough, is obsessing over stuff. lol! For my dad it was Ukraine but for me it will probably be something silly like Twitter. -- quickly brushes under the rug the fact that she's in the twitter addicts group here on multiply.)

  18. Hi Meg,
    I don't have Pick's in my family, but plenty of Alzheimers. Someone once said that dementia isn't forgetting where you put your glasses. It's forgetting that you wear glasses.

    I'm really grateful you shared about your husband's response to your Dad's decline. I hospitalized my son yesterday for something unrelated to any of this. But for months leading up to it, his father and other men in his life have been behaving like I wasn't tough enough on him, that all his problems were laziness or stubborness. I didn't buy it.

    Those same men, today, are saying, "I never guessed that something was wrong ...." I guess that's why there are Moms and daughters.

    A wonderful Mother's Day to you and your Mom.

  19. I think that this is what scares a lot of people when it comes to dementia illnesses. That, unless you go and get tested, there is no way to know until it hits, which can be 60+, or 30/40s for certain inherited forms that show early.

  20. i think there's a test for alzheimers, although i don't hear much about it so i wonder how accurate it is. generally people are still "tested" via memory tests (which my dad passed with flying colors when they tested him -- a clear difference between picks and other forms of dementia). i've never heard of a test for picks and some forms of dementia hit only because the person first has a stroke or head injury.

    i think the most important thing is having people around you who are able to notice when something seems "off" and who are willing to take you in for some sort of testing. (even though my dad passed the memory tests, brain scans still showed that something was up with his brain, confirming my mom's suspicions.) the problem, though, is that often the changes lead to divorce or estrangement. then the person goes not only undiagnosed, but they also end up having no one to care for them.

    i've been in a situation before where it became increasingly clear to me that a person was starting to have memory loss (among other things) but when i mentioned it to family members, instead of going "huh, that explains why he's been doing such and such. maybe we Should get it checked out" they turn on me and say that i'm making things up and i obviously don't know what i'm talking about. with some forms of dementia (notably alzheimers) there are medications you can take that at least slow the disease down *in the beginning*. but if you don't catch it early on, then they're pretty worthless. people are really afraid of dementia. so afraid, apparently, that they'd rather live in denial, upsetting people because of their odd behavior, than try to face it head on. i hope that i'm able to face it, should it come to me. it would make it far easier on my family if i did. (although with picks, you lose emotion, so there's not really any ability to "face" something. oh well.)

  21. i suspect that women are better attuned to relational interactions and might pick up on problems faster than men because of that. i think ego sometimes gets in the way with men, too. they don't want to think there's a problem because it might reflect badly upon them.

  22. There is a test for Alzheimers, one of the things it tests for is the "ε4" allele of the apolipoprotein E (APOE) gene, which is found in ~50% of all late onset Alzheimers. But that only tells you whether you're likely to get it, since there's so many other risk factors (other genes, and environment etc).

  23. i've always wondered if my dad was exposed to something when he was in the military that might have led to this.

    but the military does a good job of covering it's tracks. since it moves it's officers around frequently, it's hard to keep track of all the people you've met and worked with. if 20% of the guys who all worked at the same factory for years and then retired in that same area came down with the same thing, you could pretty much figure out it was a work-related illness. but if a bunch of people came down with something but couldn't trace it back to anyone they still keep in touch with, you're at a dead end.

  24. I pray so many preachers could tell this to their congregation.

  25. My mother lived long enough to show signs of senility. She was always able to carry on a conversation, God be thanked, but I was fairly sure that she wasn't always aware of who she was conversing with. "Did they tell you I was gone?" she asked me one day.
    "No, where did you go?" I replied.
    "Oh? Did you need a passport?"
    "No, we just got on the plane."
    "Well, how was the trip?" I inquired.
    "The food was wonderful, but the beer wasn't all it's cracked up to be," she said emphatically.
    "That's too bad."
    "Oh, and we met Mr. Hitler. He was very nice..."
    As a student of Jungian psychology, I recognized the Shadow. I also saw that she was processing things from early in her life. There was a time when I would have tried to set her straight about the imaginary trip, or Mr. Hitler, or the beer. But at that point in my life, I just thought it was nice that she'd had a good trip that didn't cost anything and didn't involve her drinking real beer. I wrote a poem about her final years and what I think was going on in her unconscious. See my blog if you want to read the poem.

  26. lol! if only all our vacations could be so cheap. ;-)

    and for anyone wanting to see what jorge has written on his mom, click here. :-)

  27. Meg, my dad underwent six weeks of radiation to the head after some cancer was removed from his neck. He was never quite the same after that so I've always been very suspicious as to wether the radiation trauma cause his onset.

  28. Thank you for the information.

    PS: My grandpa has dementia...very sad.

  29. I thought your poems are lovely... and incredibly moving.

  30. meg my dad has picks too. We have chatted before. My dad was a plumber. He learned the trade in his twenties and until 4 years ago was working full time in his own business. What did your dad do for work? I have always wondered about "enviroment" cuz I am sure that he was exposed to many things including lead and asbestos.

  31. my dad was in the air force. i've wondered about environment as well. but it probably would have had to be something released in the air because all he did was push papers around. if something had been released on the base while my dad was there, it would be impossible to track because the military moves people around so much that it would be hard to locate everyone today and find out what their health is like.

  32. buy the doctor's a copy of The Banana Lady book, by Kertesz. it has all the medical jargon they'll need to better diagnose. my mom had some struggles getting disability for my dad. i'll have to ask her what made the difference that allowed her to finally start getting it. i'll also ask her what meds helped the most. i know that just getting him to sleep longer helped because it gave her that much more time in the mornings and at night to be free of him and his constant questions.

    you're at the worst point in the disease, in my opinion. to outsiders your mom probably just looks like she's fine but out of control. but to insiders, you can see that it's more, or different, than just that. something has changed and it's a pain in the butt to deal with, but you don't get any sympathy from anyone else because they don't realize it's actually a disease that's making the difference. it seems really weird to say this, but as your mom loses function, she'll be easier to deal with. my dad has slowed down to the point where he just sits in a chair all morning and he hasn't spoken in years. the fact that this is dragging on forever is still wearing on my mom, but at least the constant barrage of *stuff* coming at her from my dad is over.

    i'll check with my mom about meds, etc. and get back to you. getting recognition of the disease might help to get some outside support, which could make all the difference for you and your dad.

  33. my mom said she found a place that deals only with dementia and had him diagnosed there. they knew enough about picks to write just the right stuff down on the disability form. i think the place was near denver, but there might be something near you.

    my mom suggested seroquil (which you already tried, right?) but said that she's not sure it really did anything. it just felt better to *think* that she was doing something that might help.

  34. Hi Meg, thank you so much for your fast replies! They mean so, so much to me... I'm so sorry for the delay in replying - my mom is sadly in the hospital... One of her obsessions is drinking Pepsi, and if she cannot get Pepsi, she will choose to sneakily chug down tap water whenever she can. We keep all of her beverages locked away, but it's *so* hard to keep her from drinking tap water. :( Sadly, it seems she took in a massive amount of water, since she is in the hospital with extremely severe hyponatremia (low blood sodium). My mom is dangerously, severely ill - her brain is apparently swelling, and she's hardly conscious. She is not aware of anything that is going on around her; she may even be in a coma. :( We need to do a CT scan, but we can't; my mom is jerking around unconsciously, and even with restraints, she can't remain still. I'm so worried that she might not make it through this terrible ordeal... I feel so guilty. Our family does it's absolute best to monitor her tap water intake, but sometimes, it's incredibly hard. I just hope we got her to the ER on time!

    We are definitely going to order the Banana Lady book - thank you so much for that recommendation, and for asking your mother about what helps! It means a lot to my family and I. I'm going to link my dad to this page, I have been telling him all about the stories I've read, and how much we have in common with all the wonderful people here! As for medicines, we have indeed tried seroquel, and she is actually still on it; we have her take two halidol during the day, and then one seroquel at night. I definitely agree it's comforting to think that at least we feel like we are trying to help our loved ones! It's so hard to tell what is effective, since she has amazing days, and then terrible days where she can hardly function. Sadly, she's at the point where anyone who once knew her - even the clerk at the dentist's office - notice that something is horribly wrong. :( My mom has a history of mental illness, so perhaps we overlooked the subtle signs?

    As for Denver, I actually live in San Antonio. :) So it's not too too horribly far away, but not necessarily convenient, either. I would love to arrange a plane ride there, but this hospitalization is going to severely deplete my family of funds. We desperately need disability or medicaid! If your mom has any tips for that, I'd be so grateful to hear them. Did she end up having to hire an attorney? I think that might be our next step.

    Thank you so much, Meg! I hope so much that my mom survives this hyponatremia... it is truly frightening.

  35. No, she never hired an attorney. Finding someone who knew what to write on the form and how to diagnose the illness was the key... and persistence. And once they approve the disability, you get it retroactively as well, which really helps.

    Is there a Mayo clinic down there? They might be able to diagnose it correctly. Or you might even be able to get your mom's doctor to call a dementia center somewhere else to get input on her case.

    Don't beat yourself up about what happened. It's not like you left matches and kerosene out and someone started a fire. You'd have to turn the water off to the entire house every time your mom is out of your site if you want to keep her from drinking. This disease does crazy stuff and it's the disease that's doing it, not your mom and certainly not you. I'm sure you've gone above and beyond what most people would have done already. Go easy on yourself.

    Have you looked to see if there's a support group in your area? They're often for dementia in general or Alzheimers, but it might still be a good place not only to get local support and encouragement, but people at the meetings might also be able to put you in touch with doctors that might be better equipped to help with this, or other local resources that might help financially or physically. It would be worth looking in to.


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