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Alzheimer's People Are People Too    
Wednesday, November 25 2009 @ 03:22 PM GMT+4
Contributed by: Lise

ObituariesAbout a month ago, I wrote an essay about my father and his battle with Alzheimer's. Things were moving so fast that I never got around to posting it, but now that it's all over, I would like to put the essay out there as a tribute to my father and in hopes that it helps others who are also dealing with this disorder.

My father, Leo LePage, died on Monday, November 23 at 7:50 pm, with all his children, his brother, and my mother around him wishing him safe passage. It was easily the saddest moment of my life but all the same, I could not wish him back to life as he was at the end. I'm glad he was finally released from his suffering as much as I know I will miss him.

That said, I want to thank, from the bottom of my heart, the many people in Brattleboro who helped my mother and father (and Chris and I) in this incredibly difficult odyssey.

Steven K-Brooks helped us get into a house in Brattleboro when moving here became an emergency for my mother. His low-key but friendly attention made all the difference.

Jim, Peter and Roger Evans were the kindest contractors I have ever met, and despite the impossible schedule, managed to give us a kitchen before my father got home. Paul Gardner also broke his schedule to help us get Dad's room ready for him.

Dora stayed with us for two long days of moving, and was moral support throughout.

Spoon Agave was with us for the long drive up to Laconia and back to rescue my father from the nursing home in September. His patience and calm good humor got our family through a scary and difficult day.

The many caregivers — Steve, Laura, Laurel, Erica, Suzanne, Celine, and Lou Anne — as well as the Visiting Nurses and Brattleboro Hospice folks provided daily and much needed help and support. I would like to say publicly that the people who helped us were quick to catch on to what my father needed and despite how difficult he often was, hung with us to the end with such patience and understanding that you would have thought he was their own relative. I know my mother could never have done this without them and we are ever grateful.

And finally, I'm personally grateful for all the support from my friends and neighbors in town who understood this crazy thing we were doing and quietly rooted for us from the sidelines. Their kind words throughout meant so much.

My father couldn't go on as he was but if he had to go, he couldn't have done so in a better place or among better people. Thank you all, from me, my mother and brothers, and my dad.

Alzheimer's People Are People Too

Over the last decade, I've watched my father's decline from Alzheimer's Disease, a common mental illness that incapacitates and kills elderly Americans at an increasing rate. It's given me more insight than I ever wanted to have into this baffling condition, or at least, how to deal with people who have it.

From what I've experienced, I can safely say that Alzheimer's is widely misunderstood. To many people, Alzheimer's is an embarrassing disease, often the butt of jokes. Those jokes are only funny if you're not dealing with Alzheimer's. They are a hedge against fear — the fear that healthy people have of losing their minds.

Understanding Alzheimer's people becomes essential when you have to deal with one day in and day out. They can test your patience but they can also bring you to compassion, if you're willing to let go of a lot of your preconceptions about how people should act at any given minute of the day. My father is capable of being a lamb or a raging lion, depending on whatever invisible impulse strikes him. He looks old and infantile, curled up in his chair, and he scares people. But then there are moments when he's still the guy I remember as my father, and no matter who he is, I love him.

Love Helps

I remember a story my mother told me about training cats. She said that cats thrive on love and that yelling at them or punishing them is pointless because they just don't understand it. As my mother said, they think you're crazy and they run away. I think old people with Alzheimer's are a lot like cats. They need you to love them, no matter what.

So love helps enormously. I remember thinking while standing in that crowded hallway at the my father's recently ex-nursing home that in order to be a caregiver, you have to care, actually care, about the person you're caring for. If you don't care, your patient will know it and then they won't trust you. They can absolutely tell the difference.

As with cats, Alzheimer's people respond not just to what's said or even to how it's said but to what is thought and felt. It's a vibrational thing. My father, just to go me one better, can read minds. He's done it once, maybe twice, and I can tell you, it's very unnerving to have someone tell you what you were just thinking as though you'd said it out loud. So one word to the wise is to keep your thoughts neutral or positive as much as possible, and smile like you mean it. It can't possibly hurt and seems to help, more often than not.

Still Crazy After All These Years

Which brings me to another thing about Alzheimer's people, based on what I've learned from my father. They are not "gone." You may not understand what they're saying but they are intending to say something (else they wouldn't be talking) and it would behoove you to listen. My father hates being excluded from conversations going on in the same room with him and will often interject comments. The comments are fairly incomprehensible but if you say "Yup, I agree." or "That's right," or something similarly vague and innocuous, my father is content. If you ignore him and continue talking to another person, he'll eventually get angry and start shouting.

I've found that my father is most likely to interject comments when wer're talking about things he knows about. He is engaged by stories out of his own life and perks up when he hears a name he knows. We were telling a caregiver friend about my father's music career and some of the memorable students he taught back in the day. My father got excited and told the caregiver that either he, or the student, or both, had been "very good." In any event, he knew what we were talking about. Later, while telling someone else about his days on the Coral Sea aircraft carrier, my father exclaimed "big ship."

My father still responds strongly to music he likes. He will sit quietly and listen, sometimes humming along tunelessly or tapping a foot or hand. We've taken to putting on DVDs of broadway shows, which my father seems to especially enjoy. He played summer stock back in the day and is very familiar with every passage of most of the better known shows. He'll sometimes praise a particular tune. When the mother superior in Sound of Music finally concluded her aria "Climb Every Mountain," my father muttered "wow!" I laughed — it was an appropriate response.

At any rate, that's what we're left with. And yet, my father used to be accomplished. He read weighty books — Russian novels, French philosophers, theorieticians of music. He was a musician in the Baltimore Symphony Orchestra for over 30 years, a pillar of the percussion section. He liked the finer things, dressed well, appreciated nature. He can no longer talk about who he was or how he is now, at least not in complete, complex sentences. But inside, he still knows who he is and was and there is still pride. But to see him, most days, you would never guess. Only we know who he is because we remember who he was and can still see that person in him.

Age Is A Matter Of Mind

It is not always easy to see an Alzheimer's person clearly, not so much because of them but because of us. For most of us, it's hard to accept how seriously our loved one has regressed. It's difficult for my mother, for instance, to deal with her formerly dignified husband scooting around on the floor or sitting there yelling at a plastic trash bag about injustices committed against him and humanity. To her, it's wrong. Grown people aren't supposed to do that.

But Alzheimer's people are not grown people in the accepted sense. The first thing to go is inhibition — no, they don't go around exposing themselves (much), but they do things that most of us would not do in public. So they will make funny faces, sit in funny postures, pick their noses, and scratch anything that itches. My father rubs his hands compulsively when he's cold. So do I, but not with such gusto unless I happen to be alone, as I was the other night when I noticed myself doing the same behavior I had seen my father doing. It's a matter of degree, as they say. Alzheimer's people can be way out there.

Neither is it just loss of inhibition. Alzheimer's people have forgotten most of what they learned about the social graces — which makes them more like age two and a half, in many regards. My father clutches cherished objects and puts everything in his mouth. He makes emphatic "mmmm-mmmm" sounds when he likes his food. He loves cookies and milk and cider and roast pork. He loves tomatoes and cucumbers. He loves green beans and pudding. (The pudding usually comes with a tranquilizer in it, but hey, a man has to have his cocktail — Dad's is deprekote.)

What separates Alzheimer's people from two year olds is their ability get lucid on you, on a dime. It's true — sometimes they forget what a key is or a toaster or a pickle. And then, just like that, they remember. This was true of the bungee chord we strung to keep my Dad from wandering around in the dining room grabbing glassware. He and I looked at it together and he reached out and touched the hook tentatively. I explained that we weren't allowed in the dining room. He poked the hook again and said, "That's old-fashioned." The bungee chord worked for about three days. Then one morning, my father just walked up to it, calmly unhooked one end, and walked into the dining room.

_+_

Having my Alzheimer's dad at home is a lot of work, as my mother can tell you. But our goal is to make things better, to make the last years of his life happier, to allow hiim to die with dignity rather than drugged into a coma in a nursing home. We hope he'll play along — so far, he's trying and that helps.

What keeps us going over and above these moral obligations is my father himself. He's in a tough situation, and he knows it, but he can still have happy moments and I'm glad we're able to give him those. He can still crack us up, too, although not always intentionally. The other night, for no apparent reason, he suddenly launched into speech with a British accent. "What we really need," he drawled, sounding a bit like a demented Bill Buckley, and then he trailed off.

"What?" we asked him. "What do we really need?" but the moment had passed.

Further Reading: Living On The Threshold: Alzheimer's and the Elderly — I wrote this article five years ago (under a pseudonym which should tell you something), and sadly, little has changed.  

 

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  • Alzheimer's People Are People Too | 7 comments | Create New Account
    The following comments are owned by whomever posted them. This site is not responsible for what they may say.
    Alzheimer's People Are People Too
    Authored by: Joann on Wednesday, November 25 2009 @ 06:54 PM GMT+4
    Thank you, Lise, for sharing these marvelously written articles. I have come to believe that statin drugs taken for cholesterol can contribute to Alzheimers. Check out www.spacedoc.com to see what Dr. Duane Graveline thinks about ailments as a result of taking statins.

    Thanks again,
    Joann
    Alzheimer's People Are People Too
    Authored by: annikee on Wednesday, November 25 2009 @ 07:11 PM GMT+4
    I'm so sorry for your loss. But I'm glad he left peacefully and with all those he loved right there. It's been a tough time. You all got through it with grace, humor and kindness.

    Thanks for these invaluable insights. My thoughts are with your Mom and all of you.

    ---
    Freedom and fear are natural enemies.

    A lie runs round the world while the truth ties its shoelaces.
    Alzheimer's People Are People Too
    Authored by: paulgardner on Thursday, November 26 2009 @ 12:32 AM GMT+4
    Very sorry to hear of your dad's passing, Lise. You write so well about him - he sounds like a remarkable man.

    In the past decade I've known several people with various kinds of dementia. Nothing I saw was quite as cruel as what you describe with Alzheimer's, but sad none the less.
    One day I was with two elderly ladies with dementia taking in a favorite vista.
    The first one said gaily, "They tell me we used to stay over there, but I don't remember who I am!" followed by laughter.
    The other glumly, "I don't remember who I am either." Even after dementia set in both ladies were true to their original personalities.
    Alzheimer's People Are People Too
    Authored by: spinoza on Thursday, November 26 2009 @ 01:04 AM GMT+4
    Thanks for sharing your insight and love, it's a profound
    and bittersweet reminder that every moment counts,
    immeasurably.
    Alzheimer's People Are People Too
    Authored by: Aubergine on Friday, November 27 2009 @ 12:51 AM GMT+4
    Oh Lise, I'm so sorry for your loss.

    A
    Alzheimer's People Are People Too
    Authored by: SpudHill on Friday, November 27 2009 @ 07:07 AM GMT+4
    Lise: You, your Mom, Chris all gave your father a wonderful precious gift., being here with loved ones at the end. I admire you for taking the steps to give him a different and more loving environment in his last days and I'm sure that he must have known what you'd all done for him on some level. Good luck in the days ahead and my deepest sympathies...
    Alzheimer's People Are People Too
    Authored by: cgrotke on Tuesday, December 01 2009 @ 06:11 PM GMT+4
    Thanks to everyone who has sent condolences.

    I thought I'd share a few thoughts for others going through this, in
    case any of my experiences can help.

    Some things that worked for me...

    1. Respect

    Inside of the aging body is still a person who lived an interesting and
    productive life. While I wasn't able to get too much back in terms of
    feedback, I think it was safe to assume that regardless of someone's
    physical state they should be spoken to as if they were still fully there
    and functioning as an adult.

    This translates to maintaining a healthy level of respect for the person
    you are caring for. I would make eye contact and speak clearly and
    directly. I would allow for time for a response, even if there was just
    silence and staring back at me. I allowed half a conversation to
    become a full one, and I would say things to Leo that I would say to
    anyone - what kind of day it was, what I was doing, and so on.

    I'd assume things I said were being heard. I would never speak as if
    he weren't there in the room.

    Occasionally I'd be rewarded with a bit of a response. Telling Leo
    about our "fat, black cat" Birdie got a smile. Telling him about
    something going on would sometimes get a nod or mumble. This
    made it all worth it. I'll cherish a conversation I had that went like
    this:

    "Hi Leo, It's Chris."

    "Hi."

    "How are you?"

    "Okay."

    For me, at that point in time, two connected sentences were
    astounding. It was great.

    2. Child Development

    I found that my experience with little kids and early childhood
    education was useful. Alzheimer's is a disease that seems to take
    people through child development in reverse, especially in the late
    stages.

    An older child can find activities to keep themselves busy, or can be
    directed toward an activity. A young child needs help dressing and
    eating, has tantrums, and struggles with language. A baby lays in a
    crib and gets fed and changed.

    The same goes for an Alzheimer's patient, though backwards. I looked
    at a child development chart a month or so ago and noticed that it
    was providing a rough guide as to what to expect next.

    I give kids lots of respect, so this doesn't conflict with the first tip
    above. Working with kids taught me to do my best to be at their level
    - physically and mentally. This requires being curious about things you
    already know about - What is an onion? Can you eat it? - and
    imagination.

    I found myself returning to a zen phrase: "Each time it is presented,
    each time it is new" and tried to find some joy in looking at the
    chair's leather cushions closely every day as we made our way around
    the house.

    I tried to see the world from Leo's point of view.

    3. Patience

    It's a given but should be mentioned that patience is required. It's not
    a time to judge, and getting frustrated won't help you.

    I found that Leo wanted to do as much as he could on his own, and on
    his own schedule. If he didn't want to get up and walk to the other
    room, I found it easiest to say "OK, no hurry, we can go whenever
    you want." Forcing things always led to frustrations for everyone.
    Usually the wait would just be a few minutes.

    That's true of most Alzheimer's events - seeing a hallucination,
    yelling, being upset, sitting on the floor, etc. They occur, and they
    pass along. Time can be on your side if you can take a deep breath
    and find a way to have patience.

    4. Love

    Animals have taught me that love can be a great motivator. I think it
    is important to have some love for the person you are helping. We
    experimented with stern words a few times for "bad" behavior, but I
    wasn't convinced it helped. Kindness, sympathy, and forgiveness
    (when your favorite item is broke, or you get hit) go far.

    This is temporary though it doesn't seem like it. The goal is a graceful
    and smooth, painless exit, if possible.

    5. Humor

    Alzheimer's is cruel. You'll do well if you can maintain a sense of
    humor. I was able to understand and laugh about a few things.

    There were the occasional yells of things I didn't understand. A
    common one was "Put it in!". OK, I'll try....

    There was the night we went to help get Leo into bed and found him
    sitting under the piano. It reminded me of A Christmas Story, with the
    little boy hiding in the kitchen cupboard. We sat under there a while
    and talked, then found reason to come out and head toward bed. It
    would have been easy to be mad, or embarrassed at this behavior,
    but joining in seemed to do the trick.

    ............

    Overall I'd say Leo was very lucky to be able to get out of the home.
    I'd recommend it to anyone who thinks they can handle it. There are
    resources and people that can help you.

    When we picked him up at the home earlier this fall, he didn't look
    good. Within a week of being home he was much better - recognizing
    things, walking around, and participating as best he could. The
    disease, unfortunately, took over and eventually took him but he was
    at home, surrounded by his pets, kids, wife, artwork, music, and great
    caregivers.

    If you are going through something similar, feel free to get in touch if
    you have questions. You aren't alone.