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    • Jesse Loren

    • May 14, 2014 in Columnists

    A reflection on caregiving and dementia, Part 1

    My vibrant mom masked her dementia for as long as she could. She was cheery, had good phone skills, was charming and disarming. Social skills are often one of the last skills to go for the dementia patient. While mom was mainly pleasant in social settings, sometimes she was a barracuda.

    For example, we went to the Madonna restaurant for hot fudge sundaes after a long, leisurely drive. Mom saw herself as a local and a long time patron of the Madonna, and also entitled to top, professional service. When her sundae came with soft serve ice cream melted to liquid, an overabundance of fudge, and no actual icy lump of real ice cream, mom had a meltdown. She verbally reduced the server to an incompetent and perhaps ice-cream malicious miscreant. When the server looked for the manager, I left cash on the table, redirected mom downstairs to the see something in the opulent Ladies Room, then went out a separate exit. I had to whisk the dementia bandit to safety before both of us were arrested!

    Mom was livid that such a fine place could serve such trash food – after all, mom “ran a restaurant.” The truth is, she was a waitress in her early days, and a fine one, but dementia altered the memory and the emotion invested in the memory. Her go-to position was righteous indignation. (I can see her arms folded and her right foot stomping.)

    One of the hardest parts of being a dementia caretaker is to accept the person’s altered reality without insisting on being right. There was no point in saying, “Mom, you never owned a restaurant.” It was better to sympathize with the injustice of being unable to find a decent sundae after a fine summer day. After all, she wouldn’t remember the incident in another hour.

    The caregiver has to accept, like the Serenity Prayer, the things that cannot be changed, while also accepting the changed reality inside the head of the loved one.

    Mom also liked to bad mouth people. It was a sport. Whomever wasn’t there was fair game. While with me, she talked of my brother. While with my brother, she talked about me. While with a friend, she talked about us both and often in extreme terms. We were saints and sinners, never in the middle. My nickname was “Warden.” Another problem for the caretaker is separating myths from the beloved. One of mom’s favorite past times was telling people at the Senior Center that I beat her. It was hard to be graceful about that. (Sigh…)

    The caretaker becomes prescription manager, dietitian, entertainer, organizer, chauffeur, chief medical officer, chief triage nurse, while trying to remain patient and kind. This is complicated by a medical condition that can make the loveliest person mean, or the most independent person dependent. It’s hard to watch.

    It’s especially hard to watch the effects of dementia while mourning the loss. On the one hand, watching the person lose ability is baffling. “She could work her phone this morning, now she has every cord in her room unplugged and she is trying to get charge her phone with a speaker cord.” I was tech support for mom. I plugged stuff in, got it working, wrote down passwords, and did it all over again every time she removed and hid all the cords. It was maddening. I often felt frustrated that I had just fixed A or B and now all the cords are missing again! UGH! It’s like getting angry at a baby for being hungry. Anger and frustration didn’t help, but there it was.

    In my mind, I compared dementia to reasoning with a drunk friend who did something regrettable. You can’t argue with a person while drunk, you can only redirect her toward drinking some water and going to bed. You have to tell her you love her and reassure her that everything is ok. Her filter is under the influence. Getting mad or winning an argument with a drunk person or a dementia parent is useless and embarrassing.

    My mom, was still “my mom” up until her last breath, but dementia damaged her independence, her executive function, her nervous and muscle system, and increased her anxiety, fear and rash behaviors. I wonder if her head was shaved and wrapped in a silk scarf and she wore a big scar on her head, if it would have been easier to filter all interactions with her more appropriately.

    I realize, only after she is gone, that more kindness and levity would have helped the situation more than a serious, dutiful and logic-seeking demeanor. I realize, only after it has been a few months, that at the time, it seemed that it was an endless roller coaster of frustration, but really there was an end, and it took my mom with it.

    • Beautifully written. I have lived this with my mom as you know. I was not her direct caregiver but got her wrath non the less. She was tough in life and tougher with dementia. Hard to take either way.

      • Dora Arias

      • May 14, 2014 at 8:48 am
      • Reply

      Oh Jesse. Mom knew she was loved even though there were times she didn’t show it. You have become more kind than you even know but I know. You are loved and I am honored to be your big sister. <3

      • Heather Alani

      • May 14, 2014 at 8:51 am
      • Reply

      My heart goes out to your mother and yourself. It is beyond difficult to lose slowly the woman who is so deeply a part of you! I cannot begin to imagine, jesse. I pray for your inner strength to bear the intensity of what you have been through.

    • Caregiving essentially entails the giving up of your life to help someone else live theirs, which can be very trying at times and very rewarding at others. I have been helping my friend Joe fight his cancer for a year or so now and now I find that my mother has cancer as well and is in a hospice in Tennessee. This is very stressful for me and partially responsible for the snide remarks I have been posting online for some time now. I now take this opportunity to say that I truly draw strength from the women of iPinion and for that I thank you all.

      • Kelvin W.

      • May 14, 2014 at 11:37 am
      • Reply

      Where do I start? Beautifully written . I could feel your frustration, your desire to help, her confusion. It brings back feelings of caring for my own mother. It’s draining. I always feel for my friends that are caring for a disabled parent. Thanks for sharing this, Jesse. I think people who’ve been there will nod their head and those who may be just now starting down that path….maybe they will try to approach it with more humor and deep breaths. But its hard.

    • Thank you for your insights. My Dad is just starting down that path. I don’t know what is in store for my family. I’ll remember this story as the time progresses. I’ve bought every supplement that slows down dementia to give to him. Mom says she thinks it’s helping. She brings him to exercise several times a week. He & her do “Spinning” , a stationary bike class. He keeps up just fine, standing & sprinting, pedaling & climbing. He takes my water class too. She keeps him active. She’s a champ! He will be 86 in July. He still knows who we all are but can’t remember what he did yesterday. I’m glad to still have both my parents around.
      I feel helpless watching him go into this disease.

      I’ll sign this- Daddy’s Girl.

      • Karen

      • May 14, 2014 at 9:09 pm
      • Reply

      Dementia is a heartbreaking and hard to understand. To watch the person you have loved your whole life do and say things that are so painful it tears you apart. The worst of it is they do not even realize what they are doing or saying. Your explanation is the best I have read or heard. Your comparing reasoning with a drunk person or someone with dementia made it easier to understand.You won’t argue with your drunk friend. You would redirect them, understand that they didn’t mean what they were saying and most likely won’t remember it anyways. It is sad that we as people have such low tolerance for things we do not understand or that are different. That on a daily basis how rude and mean we are to each other. I watched my best friend move from Arizona to Spokane WA to be there and care for her mom. It was heartbreaking. There is no right or wrong. No could have, should have, or would have. You were there for her. I would encourage you to tell your story over and over. Your words are written beautifully and they helped me to understand dementia in a new light. Thank you!

      • Kathy Schoenfeld

      • May 14, 2014 at 9:33 pm
      • Reply

      Thank you for writing this. We are going down that path with my dad and my husbands mom. There are so many questions about how to act and what to say and do. The fact is that a person with dementia is no longer capable of learning new things. They are who they are and you love them and show grace. It is nice to know we are not alone. God bless you.

      • Norbie Kumagai

      • May 14, 2014 at 10:25 pm
      • Reply

      Jesse, the first time I reached the part of “The List” (those tasks a Caregiver performs), I had to stop, take a deep breath and say a quick prayer before continuing on. As Mr. Sanders wrote, “Caregiving essentially entails the giving up of your life to help someone else live theirs, which can be very trying at times and very rewarding at others.”

      Love You!!! xoxoxo.

      • Carolyn Wyler

      • May 15, 2014 at 8:04 am
      • Reply

      When you mentioned your mom’s arms folded and stomping her foot, it brought back a clear image of my mom doing that as well. Though my older brother became the role of her caretaker, it was tough watching her become increasingly more forgetful, but so insistent that what she thought and believed was what actually happened.

      • Valerie

      • May 6, 2016 at 8:44 am
      • Reply

      I think you felt sever because of how tired you were. The impression I had was that it was always a joy to be around you both, always felt festive, and she beamed with happiness and health. I’m sure everyday wasn’t like that, but I was always in awe of how magical every gathering was and how well you were able to juggle so many things caring for your brood. Your Mom was amazing, she shines bright as an example to me on how to spirit on. Those mediocre sundae makers beware. Let’s go grab a sundae in her honor.

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