Sunday, July 07, 2013

Dementia Diaries 2

Just back from another super-quick weekend at my dad's, and there is not one bit of funny left in me.  Dementia is simply a monster, folks - especially when the person suffering from it is semi-aware that he's losing his marbles.  "I can't...think," my dad says, frustrated, clutching his head.

And, yes, the voodoo priestess is still there.  To be fair, I've observed that she really does understand how to handle a person with dementia - she keeps my dad on a schedule for sleeping and eating; she allows him to do some things for himself - tying his own shoes, combing his own hair - even if it takes longer; she makes sure that he is clean and well-fed.  But, still, the kindness in her is of a very rough sort; and - control freak that she is - when things don't go totally her way, she gets noticeably angry and impatient.  It's a mixed bag: just when I am thinking that no, this caregiver needs to be dismissed RIGHT NOW, she does something caring and compassionate that I know few caregivers would have had the insight to do.

Meanwhile, my father is still (erroneously) convinced my brother is stealing all his money and is planning to put him out of the house.  It wrenches my heart to see him trying to make sense of things with whatever scattered pieces of his brain he has left.  No matter how senile a person gets, apparently, he never stops trying to derive meaning from what is happening around him.  And, really, what can be more human than that search for meaning?

So, thinking that maybe his long-term memory would be better than his short-term one, I spent the weekend reminding my dad of happier times.  "Remember, Dad?" I said, pointing to a spot on the driveway by the garage.  "Remember when you surprised me by putting a kickstand on my purple bike?  You brought me outside and it was right there."  Or, "Remember when you planted that dogwood tree, there by the side of the house?  The day I was born, Mom said.  50 years ago!" 

Remember, remember, remember...I needed him to remember, I wanted him to know that he once had a life -- and a good one, at that.  I wanted to make him smile, remembering.  But the most I got was a confused nod/shake of the head and an uncomfortable laugh. 

I don't think he remembers.

[Memory image: BetterThan50]


  1. This hurts to read. It's so hard to watch the people we love fade...

  2. I'm so sorry for you and your father, and so sad to hear about his condition. It sounds heartbreaking.

  3. Oh, friend. I am so sorry. You are going through a difficult experience, no way to sugarcoat that. I'm thinking of you.

  4. So hard to see someone you love like this. Deepest sympathy.

  5. AnonymousJuly 08, 2013

    Hugs, honey. I'm praying for you during this heartache. I think this has to be one of the worst possible ways to end life. And I cannot imagine the conflict about getting the right kind of care, either. Dementia is a cruel monster.

  6. Yes, the hardest part (or more accurately--another hard part) is when they KNOW they can't remember. My dad would lament, "I'm so goofy" the time he could only recall snippets of his childhood, he was more peaceful, less anxious. (He died on my fiftieth birthday). Now, my mom is frustrated with her inability to remember anything for more than a few minutes and she sometimes thinks we're stealing from her and all that...

    So, in the meantime...we do it because we can and must. We try to find some humor in it, we vent when it helps, we compromise when we need to. The voodoo priestess might be one of those compromises. Hang on. We hear you.

  7. When my grandmother first went into assisted living I talked with one of the caregivers there who said the longer the dementia went on, the more likely gram was to slip back to her oldest memories. She said we may want to have more pictures up from her life before children--her own parents, her sister. It was hard for me to watch gram lose the concept that my brother was married and had a daughter. I think she remembered me to the end, but I know she started calling my mom her sister's name. It's heartbreaking, all of it. I'm so sorry.

  8. AnonymousJuly 08, 2013

    I second Korinthia's comment. My mother in law suffered for 12 years with dementia, but there was a period when we could engage her in the past with pictures. Get an album and label the pictures with names and relationships. One doctor told us reading was one of the last skills to go, so labeling helps. Videos might help too- some people will watch them on endless loop. Sometimes music helped too, so we would play a mixture of old pop music and hymns. She also liked to have the bible read to her, so we sometimes read psalms. Conversations wasn't real dynamic, since we had to repeat ourselves a lot, so some of these other activities gave us a way to spend time with her without depending on conversation. Less frustration all around!

  9. I'm so sorry you are going through this. My father-in-law lived with us for 6 months last year (he was 93) and it was horrible to watch him wake him every day so confused, wondering where he was, when he was leaving, where his car was. And he constantly worried about his money. (My mother-in-law is in a rest home with Alzheimer's and he was so worried that he would run out of money to take care of her.) He would even call the company that he retired from 25 years earlier to ask how much money was in his pension plan.

    It truly is heartbreaking to witness. The only thing that got me through those 6 months was prayer - lots and lots of prayer. I'll be praying for you and your dad (and the voodoo priestess).

  10. My heart breaks for you as well. Every time I read something like this, I wish for a magic button to help.

  11. Use WisdomJuly 09, 2013

    Others have said it better -- and it is so heartbreaking to watch. I hope you are comforted knowing the gift you are giving by your very presence shows great love.

    We walked this path too, and the best advice given to us was not to ask them to remember, but to simply tell them the stories. Let them live the stories again through you, and especially heart healing for us was telling the stories of gratitude. We could share again our gratitude for the parenting blessed upon us.

    Your kind heart and humor are measure enough that your parents are some of the extraordinary ones.

  12. He is so lucky to have you. You are doing everything I can imagine doing, and well. my heart goes out to you, and him. I hope he finds some peace in his memories.

  13. Oh, this hurts! I'm so sorry.
    My dad has some dementia but I *think* his more difficult problem (besides not being able to walk or get himself from lifting recliner to wheelchair) is being unable to remember words to use to express his thoughts. He can't remember the name of his umbrella disease (Parkinson's). I wish he wasn't so far away.

    You are a good daughter. There is no easy way to walk through this.

  14. I don't even know what to say ... but in remembering for him I know you're doing the right (best) thing.

    If we were neighbors I'd show up with a cappuccino :-)

  15. AnonymousJuly 13, 2013

    I feel what you are feeling - it is so hard to be a witness to this "process" - right now, today, my advice comes from my cousin, who went through it with her mom. She found that telling my aunt what a good job she was doing somehow made things a little better. I tried it with my mom a couple days ago, and she said "Just keep telling me that!" - which is what my aunt said, too. It's a scary thing for them to go through, something no one can really imagine or practice for, and it must be nice to have someone say they're doing a good job.

    And it does seem better to just tell the stories than to ask if they remember. Not a test, just a lovely moment of shared history...

    Thanks for sharing this with us.

  16. This is rough, indeed. I have heard that playing the music of their youth is a great comfort to those with dementia.