June 4, 2008

Update on my dad -- Picks Disease: year 13 or so

This is an excerpt from a letter I wrote today:

My dad continues to get worse.  For a long time he seemed to stay about the same.  He was more active in the summer and a bit easier to deal with in the winter, but from year to year it seemed like he was stuck at a point where he could converse and do various activities, he just couldn’t remember very well and he occasionally did embarrassing things (like comment on how fat someone was within hearing distance).  But in the past two years there’s been a sharp decline to the point where now he hardly speaks.  He can read almost anything, but spontaneous speech is pretty much limited to a few lines.  (“Let’s go out the front door,” being the one that I hear the most often.)

My mom sends him to adult day-care twice a week.  They’re really good with him and it gives her a breather.  She really should have sent him more often when he was harder to deal with, but any break, even now, helps.

He walks A LOT.  You can walk in a circle at my mom’s house through the kitchen, the dining room, and the living room then back to the kitchen.  Pretty much my dad just walks in that circle from the time he gets up to the time he goes to sleep.  A couple years ago he went through a phase where he ate everything in site (including food in front of other people and dog or cat treats that were left around).  He gained a lot of weight and went up several pant sizes.  Well now he’s lost all of that weight and is even thinner than my mom ever remembers him being.  Something about the dementia makes him agitated and he just walks and walks and walks.  If he sits down, it’s only for a few seconds and then he pops right back up again to walk around some more.

If you ask him a question, he’ll look at you for a few seconds, and then continue doing whatever he was doing before (most likely walking).  As recently as 6 or 8 months ago he was able to answer a question such as “Who am I?”  but not any more.

It’s difficult getting him to eat anything.  If cookies or candy are sitting out, he’ll grab something to eat and munch while he’s walking.  Lollipops are particularly favored, although he’ll chew the stick when the candy is gone, so you have to watch and remove the stick when he’s reached the end.  But getting him to sit down at a table and eat is very hard to do.  Often you have to hand him a plate of food and he’ll take a bite while walking.  Then he sets the plate down and you have to get it and hand it to him again on his next pass through.

But while he’s clearly getting “worse,” he’s also getting better in the sense that he’s easier to deal with.  Whereas before he’d ask questions almost non-stop, now he hardly talks and when he does it’s quieter and not insistent at all in the way that it used to be.  He’s pretty gentle and complacent (other than needing to walk like crazy).

He’ll most likely eventually lose the ability to speak at all, even to read.  Sometimes he leans when he walks, so obviously something is taking place physically, but it’s hard to tell what’s going on when he can’t tell us anything.

The plan is to try to take care of him as long as we can on our own and only put him in a nursing home when it’s too hard to care for him.

The picture is of my dad after I picked him up from daycare where they had been celebrating Mardi Gras.

54 comments:

  1. Does he recognize you or your mom?
    I'm just thinking that, by this point, he's effectively gone.
    Does Picks affect motor control at some point?

    Dementia is a truly horrible disease.

    Aloha,
    Michael.

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  2. Looking at the picture and reading this brought tears to my eyes.

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  3. Don't know what to say, Meg...

    My thoughts are with you and your family.

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  4. Meg, thank you for the update. What a great picture of your Dad! Always interesting to hear how he is doing and how you and your Mum are managing. My Dad continues to get worse too. He was diagnosed 3 years ago and from being 'normal' 3 1/2 years ago, he now has no short term memory, talks non stop, occasionally gets aggressive and angry. All his thought processes come out verbally so it is very embarrassing as he says EXACTLY what he is thinking. His degeneration has been very fast over the last 6 months so we are nervous about the next six.

    When his grandchildren are talking to him he often doesn't reply now, just starts another topic. Still lots of fun at times. Hard to handle. Miss him how he was, dreadfully.

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  5. there's no telling, since he doesn't call us by name. but he prefers to go places with my mom than with me, which i think indicates he knows her.

    Does Picks affect motor control at some point?
    yes, i believe so. it affects some people much earlier than others. my dad, for the most part, seems very much in control still (except for the leaning). but if he's sick, he can't tell you (it's been that way for years) and he might throw up without prior warning (but that's only happened once quite awhile back).

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  6. that's where we were probably 3-7 years ago. i think it's a much harder stage emotionally and physically than where we're at now. but looking back, it was also a better stage in that there was more dad to interact with then. now he's more of a walking wall flower. he looks up at you when he passes but he won't even say hi.

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  7. What a terrible journey to witness. I just can't even begin to imagine how difficult it is for all the family members...or even for your dad. Thank you for the update...keep them coming, please.

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  8. My prayers are with you Meg... its hard on yaw I know but it looks like yaw are taking good care of your Dad... thanks for sharing him with us, xoxoxo

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  9. In a more humorous side of a related issue, I present the German Bus Stop To Nowhere, which is an interesting way to deal with errant nursing home guests....

    Aloha,
    Michael.

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  10. that's great. i'll have to post that link in the dementia group. they'll get a kick out of it. (and maybe it'll even help someone.)

    my dad wants to "go somewhere" and he'll go sit in the car in the garage for hours just waiting to go. he doesn't seem to mind sitting in there all alone and my mom gets a break. ;-)

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  11. Meg, it's been a while since I've posted to you. My dad is much worse as well. His motor skills and speech are very impacted at this point. He still refers to me by name when asked but almost NEVER initiates conversation. He almost always needs a prompt even to see how he is feeling or if something is hurting him. He also is wanting to move constantly and almost always wants to go somewhere. We found him in the car just this week after he had been missing for a few minutes. He's been falling quite a bit this year and once needed stitches to the back of the head. We've combined households with my parents this year in an effort to help my mom care for him and allow him to be home for as very long as possible. He is also in a pretty complacent state of mind most of the time. He's so gentle and kind. Even when teasing him, I'll ask if I should give mom a "spanking" for something and he'll say "no, I don't want you to bother her." How funny! He loves her so much! I miss him more than words can say but I'm learning to be thankful for each day whatever it holds. Take care, Meg. I'm thinking of your mom, dad and your family. Kim in Cincinnati

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  12. after reading dic,it hurt me da way ur family does.
    i can imagine there's scrape 4 ur family & ur dad.
    thank u so much 4 sharing.
    wish everything'll be all right.

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  13. dear Meg,
    i know you're in a very hard situation right now, watching your dad suffers and yet you can't do anything about it. just be strong and i wish that everything turns out well. God bless...

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  14. I hope he's doing well. Looking at his picture reminds me of my late dad.. Take care of yr family n yrself too Meg.

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  15. Prayers for you and your family...

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  16. Meg, my heart goes out to you , my dad also had picks. I had to look after him until almost the end, but as I worked every day , I had to put him in a nursing home. Not 10 years later my husband got alzheimers. it was nothing like dads Picks. Hard to believe the 2 both under the roof of dementia could be so different. Take care & love him til the end...
    Do not ask me to remember,
    Don't try to make me understand.
    Let me rest & know you're with me .
    Kiss my cheek and hold my hand.
    I'm confused beyond your concept
    I am sad and sick and lost
    All I know is that I need you ,
    To be with me at all cost
    Do not lose your patience with me
    Do not scold or curse or cry.
    I can't help the way I'm acting
    Can't be different if I try.
    Just remember that I need you ,
    That the best of me is gone.
    Please don't fail to stand beside me
    Love me til my life is done.

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  17. thanks, maggie.

    it's only really hard on me when i think about how much my dad would have loved hanging out with his grandkids. :-(

    he's much easier to deal with these days, though my mom did manage to lose him at sam's club yesterday. *sigh* thankfully the cop that found him was familiar with the situation.

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  18. Thanks for sharing. I hope your Mum and Dad are both doing well!

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  19. I'm 27 years old and my mother just passed away in September. We first noticed something was wrong with her around the time I was 10, and she was finally diagnosed with Pick's when I was 16 (my brother was 11). I totally understand what you are going through. After reading about your father it seems like my mother's condition had both similarities and differences. I can hardly remember who she was before the symptoms started and that's what is the hardest for me. My grandma (on my father's side) was diagnosed with Alzheimers 2 years ago, and so I'm dealing with that as well. Just as maggie556 wrote, it is a completely different expereince this go around. I just wanted to let you know you are not alone.

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  20. thanks, amanda. knowing that there are other people out there who have been through the same thing does help.

    i'm sorry you lost your mom so early. one of the sad things about dementia is that oftentimes you "lose" your loved one long before they pass away. i feel like we never got a chance to say goodbye to my dad, even though he's technically still here with us. :-\

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  21. Hi Meg

    My dad had Pick's for about 7 years before he went to stay for a week's respite in care to give mum a break and for various reasons ended up in a restricted hospital. He was the most gentle man you can imagine, never shouted - not even back when I was a teenager living in the house he'd not long finished building and broke the purpose-built fibreglass bath tub. Twice. While at the home he somehow ended up in a tussle with a nurse and we've since heaqrd that Pick's can involve something called "alien hand" where your hand doesn't do what your brain tells it. We think he may have been unable to let go and overbalanced. We'll never know because his first symptom was that he lost the ability to speak. Another symptom that we heard about and other family members may find useful is a kind of tunnel vision, which means you are surprised by people coming out of your direct field of vision and makes you uncomfortable in environments where a lot is going on. We didn't know how much dad understood but I'd have loved to hear him sing. The only sound he could make for years was coughing because he had difficulty swallowing. On the positive side, though, could sit still long enough to be cuddled :o). Anyway, good luck and give your mum a HUGE hug from us. Lots of love Helen

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  22. thanks, helen. :-) it's always good to know that other's understand.

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  23. Just read my message again - wrote it late last night - and realise it sounds like I mean family members might find the tunnel vision useful (sneaking about eating biscuits unnoticed, and stuff?!). Course I meant family member might find it useful to know tunnel vision may be one of the symptoms :o).

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  24. Just read my message again - wrote it late last night - and realise it sounds like I mean family members might find the tunnel vision useful (sneaking about eating biscuits unnoticed, and stuff?!). Course I meant family member might find it useful to know tunnel vision may be one of the symptoms :o).

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  25. Just read my message again - wrote it late last night - and realise it sounds like I mean family members might find the tunnel vision useful (sneaking about eating biscuits unnoticed, and stuff?!). Course I meant family members might find it useful to know tunnel vision may be one of the symptoms :o).

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  26. lol!

    i think i knew what you meant.

    my dad had tunnel vision not only for bananas and candy (he was never a candy person before) but also for picking up coins in parking lots (which got the police called on him several times) and picking up dog poops (of all things! though it came in handy for us as he'd clean out our back yard.)

    now he just walks, though. oh well.

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  27. Coins would have been useful. I just gave my foster son £10 to get a present and in the space of five minutes, he'd lost it. Dog poops - must have been a market for that. Now I won't suggest sponsored dog walker because there comes a point when I put my foot in it trying to cheer people up. But I can tell from your writing that you have a sense of humour too. Hold on to that. It'll get you through the hard times. Better go. My six-year-old has been rooting through the Christmas cupboard and found the glitter...and glue... and everything else to put it on except paper. Merry Christmas Helen

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  28. Meg,

    Thanks for sharing and keeping us updated on your Dad's progress. Have a Happy Holiday Season. Stay blessed

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  29. Helen, thanks for sharing too. I had not heard of Picks until Meg described her Dad's condition.

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  30. "better" in this case simply means easier to deal with. there's no known cure, there's no known medication that can reverse or stall the mental decline. with alzheimers there's a drug call aricept that will at least forestall the decline. there's nothing like that with picks.

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  31. It's such a tragic disease... my heart goes out to you, Meg!

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  32. Meg, I came to your site to thank you for welcoming me to Multiply and offering advice/links to check. That was very kind of you. Then, once here I see that your site is not just a wonderful repository of humour and human insight but also a very personal sharing of your family's journey with a sad, soul straining disease. My dad passed away from Alzheimer's so I recognize the struggle. Thank you for connecting and finding ways to balance.

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  33. I believe that we can never know for sure how much of that person is 'still there'. So I chose to believe that my mother was still there somewhere and continued to care & love her with as much dignity and respect as I always had. Just like with someone in a coma, I think we have to assume their spirits are intact, even if they can't express it. Dementia is truly horrible.

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  34. My dad has dementia, too. I just hate it when other people (siblings, nurses, social workers, etc) raise their voices in frustration when speaking to Dad as though he is fixated on something and asks the same question 20 times because he is deliberately trying to be difficult. My dad is so smart, he has charisma, and style, and these incredible blue eyes that I would recognize anywhere. Looking back, I think my dad has had dementia long, long before he was diagnosed. He also showed symptoms of paranoia and had delusional episodes (personally, I think the delusions are the brain's way of distracting someone from grief with which they are not able to cope....) and his condition has progressed little by little over the years. Can anyone imagine how frightening, disheartening, disappointing, and even embarassing realizing in your own mind that you are literally losing your mind? I know now that Dad tried the best he could to cover it up. When he could maintain no longer, almost two years ago, he flew to Columbus, Ohio (from Tuscon where he lived) - took a bunch of potassium pills, was ultimately admitted to the VA hospital in Chillicothe, Ohio where he remains. My brother and I live in Texas, sister in Arizona. Dad is so far away. I think that's the way he wanted it. He knew we wouldn't be able to go back and forth to be with him, none of us could afford to take care of him at home, and getting a sick vet loose from the VA is like...well, it ain't happenin'. Dad knew that he would be taken care of and he would not be a financial burden to any of us. The more I find out about dementia and mental illness like depression and delusional paranoia, etc, the more I cry for Dad because I know now that he has suffered for so many years, totally taken the rap for stuff he just couldnm't help, and been incredibly brave while was treated like the biggest loser by the world when he was only sick. I don't think our society will regard mental illness as a disease rather than a character defect in my lifetime. Meg, you are a dear, dear daughter to be so patient and loving with your dad.

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  35. i think this describes so well the tension and frustration inherent in dementia situations. i know my mom has been mortified so many times by my dad's behavior in public. she knows he's not doing it on purpose to embarrass her, but she can't help feeling embarrassed and angry all the same.

    now that my dad is further along, it's actually much easier to deal with him in public because it's pretty obvious to other people that something is wrong with him. but when he was physically healthier, people assumed that everything he did was deliberate and they took it out on him and my mom (by giving funny looks, yelling or calling the cops).

    thanks for sharing your story, mary. :-)

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  36. We have just recently heard about Picks Disease and are not sure this is what my dad has. He just turned 64 Sunday. He began having problems when he was around 55 or so. My dad loved his grandkids so much. Of everything that is so hard, I would say too that's the hardest thing. I would love to talk more with you on this. Everything you describe about your dad is just like my dad. You have not posted for a long time...is your dad still living?

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  37. hi tracie. yup, my dad is still going strong physically. (ok, so he fell recently and broke something in his wrist. but he still walks several miles a day, so he's still pretty fit.) mentally, though, he's almost entirely gone. he doesn't really talk. (he occasionally whispers something that he's read, but that's all.) he doesn't seem to recognize me, although it's really hard to tell. but he can pick out a blue station wagon in a line up of cars, still. (picking it out from the crowd does not mean that it's easy to get him into it, though. the stinker.) he's actually much easier to handle than he used to be because he has much less will and fights us much less. now the harder parts are keeping him clean (he's not making it to the bathroom when he should) and getting him to eat (he doesn't like to sit still so you have to feed him finger foods or trap him in a corner at the table).

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  38. he's 65 right now. he probably started showing symptoms when he was 50 and was diagnosed 9 years ago.

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  39. Dear Meg,

    My brother recently passed away from complications related to Picks disease. He was only 46. His wife abandoned him when his behavior became intolerable. Her sister told me that she told his wife to take him back to my parents and tell them that he was "broken" and that she didn't want him anymore. Instead he was arrested for abusing his children, who were at that time about 12 and 13 years old. At no point during the five years my parents cared for him did his ex-wife or children attempt to understand his disease or to see him. They did not attend his funeral, or even acknowledge his death with a card or phone call. Thank you for sticking by your dad and continuing to love him.

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  40. Oh, Kellie. That is so heartbreaking.

    Sometimes I think people refuse to look past what they see on the outside. Even when they hear the diagnosis, they still can't fathom that a disease could take someone's self away the way Picks disease does. Hopefully his children will look into the disease more as they grow older since some forms are inheritable. Perhaps as they study it more at that point, they'll be able to look back on their dad with more compassion.

    I'm so sorry for your loss and the way it played out. The disease is horrible, but sometimes it's people's reactions to the disease that cut most deeply.

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  41. Reading this again... makes me want to cry.

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  42. :-}

    we're on year 16 now. he sits in a chair all morning running his finger along the "lines" of items in catalogs. (if an item is long and skinny, he'll run his finger along that direction. any lines he can find he draws with his finger.) then all afternoon he walks in circles around the house. he hasn't spoken in years. he hasn't written much either, though a couple of times in the past year he picked up a pen and made squiggles.

    he's much easier to take care of. and he's been gone so long now, that it's hard to get sad about that. we're past the worst point, where he wasn't just not himself, but he was opposite of himself. and people find it very believable now that something is wrong with him. it was also much harder back when they thought he was just being rude.

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  43. I was listening to this song yesterday over and over in my car. It made me think of your father, especially the last verse:

    Many things can be misplaced;
    Your very memories be erased.
    No matter what the time or space,
    You cannot lose my love.

    I understand that this condition can happen to anyone and it is a comfort for me to know that we can never lose God's love. I'd like to share the song with you. It's called "You Cannot Lose My Love" by Sarah Groves.

    Here's the link http://www.youtube.com/watch?v=3ozpb6R8YSw

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  44. Recently, I've discovered that grandma doesn't always remember who I am.

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  45. I don't know. We never really checked with the medical experts. I suppose she has. She tends to forget things of the near present or people. But she does remember some things of the far past.

    One example that happened was once she wanted to visit a relative. We brought her to visit. Suddenly, she remembered an incident that happened way way way waaaay back in her younger days when she was upset with this relative. In her mind, it seemed to only happen last week so she brought the subject up and it ended up ugly. They both argued and we had to bring her home. But later, she couldn't remember the incident.

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  46. yeah, that sounds par for the course.

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  47. I hope to see more updates. My mom is suffering from the same thing (picks) and I've been so interested in reading about your dad and constantly check back for updates.

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  48. there hasn't been much to update folks on. for the most part my dad now sits in a chair all morning. then he walks back and forth around the house all afternoon. he doesn't talk. doesn't recognize people. he can't always tell what's food and what's not. although it sounds really sad, in a lot of ways it's a lot easier on my mom to take care of him now. there's still some yucky stuff, but nothing like when he'd have the police called on him because people thought he looked suspicious, or when my mom would go shopping with him and he'd get lost and it would be hours before they'd find him again.

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  49. I understand Meg. Sometimes it feels like this horrible disease has us held in suspended animation. I can't imagine it dragging on for as long as it has with your dad. The whole thing sucks. I can't think of better words. Thank you for your posts about it though, it has been a comfort for me to know that I'm not the only one dealing with these issues.

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