• Dementia and aging, part 1

    One of the things people don’t know about dementia is the person’s ability to fool you.  Social graces, humor, flirtation, and incredulity are all part of their crafty skills. They “seem” fine.  How one can have dementia and yet have social graces has to do with the progression of the disease.  The short-term memory goes, the long term stays along with the ability to say please and thank you.

    My mom could flirt with her doctors, strangers, waiters, and seem absolutely fine.  Her affect made everyone happy around her, but also easily fooled people who weren’t part of the day to day.

    In the early stages of the disease, my family was fooled by mom’s mannerisms on the phone.  She sounded great.  She sounded like the firebrand she always was.  However, visiting was different.  Mom’s residence had a mix of newspapers, bills, old mail, undeposited checks and all manner of values mixed together.  Her fridge was a nightmare of rotten food.  That wasn’t how she was.  That’s how she became over time with dementia.  She stopped paying her bills.  She believed she no longer had to pay taxes. She was agitated, short-tempered and easily confused by things that required higher order thinking.

    Mom was joyous when we weren’t confronting her on her business.   If I knew then how hard it was to be in her head, I would have been kinder.  Had I known how afraid she was about losing her memories and her power over her own life, I would have practiced more compassion. With that said, I invited her into my home to be her caretaker.

    I learned, as her mind was deteriorating in the ability to make new memories, the ability to have a filter, and the ability to manage higher order thinking, that she was scared to death.  She knew what was happening.  She knew when she made no sense.  But first, she tried to hide it. She wanted to protect herself.  Intermittently, she could cover for the dementia, but the dementia was real.

    My mom was a business person.  She was savvy with math, percentages, and long term planning.  She understood things were going poorly for her mind, and she agreed to see an attorney and set her last wishes to paper.  It was the kindest thing she could ever do for us.  She was still “there” enough that she could make decisions and explain her intentions.  She wasn’t symptomatic enough for diagnosis, but the writing was on the wall.

    If I could give anyone advice as they navigate the valley of dementia, it would be to get the end of life paperwork completed.  It’s not the sexiest thing you will have ever done, but it’s necessary.

    You need a will, a Power of Attorney, a health directive, end of life wishes, and a lot of love.  My siblings and I all wanted what was best for mom, not what was best for ourselves.  For us, the attorney was experienced in the pros and cons of these arrangements.  An experienced lawyer can see how things can become complex and misused.

    As an aside, when my grandmother lived with us, and later passed away, she had no will, no plan, and no direction for her family.  Her children drew straws to get belongings, which led to years of bad feelings.  She didn’t have a plan of what to do with her body. I still remember the way the funeral parlor took advantage of my mother’s vulnerability and made her spend too much on the casket.  I still remember walking through a valley of caskets with the well-suited funeral director.  The adults were competitive, bickering, and ugly over a tiny old ladies’  few precious things.  None of my siblings wanted that.  We learned how divisive things could get without a plan in black and white.  We didn’t want to fight over dumb stuff; we wanted to love our mom.

    There are concrete and emotional things you can do to address the inevitable end of life. First, move toward accepting the finite nature of the body.  This means not shying away from end of life plans.  Secondly, even if your loved ones aren’t decrepit, nor are you, you can’t know your fate, and must face the need for plans in black and white.  The kindest thing mom did years before it was necessary was to see a lawyer, talk about her wishes and get them notarized.  The plan she made led us to make concrete decisions without second guessing our decisions. We could mourn without the baggage of rivalry or power struggles.  Yeah mom!

    If you suspect your loved one has dementia or is just getting up there in age, it is in your best interest to get your loved one’s wishes written in a legal document.  If you suspect your family is not on the same page emotionally, it’s time to come together as a family and put your ridiculous self-involved feelings aside.


    • Such a tough, tough topic, and so hard to think about, either for your parents or yourself. Very brave of you to “go there.”

    • Beautiful piece, Jesse, and really good advice. Having navigated some of these same waters, I know what a gift it is if the person you’re caring for has made his or her wishes known. It’s painful to do, but not as painful as what happens if you don’t.

      • Doc Marling

      • March 12, 2014 at 10:47 am
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      Oh Jesse…I am right there…RIGHT THERE. This is beautiful.

    • Jesse, I so understand this as my mother is in her last stages of life. Fortunately when my dad died in 2003 my sister and I went through all this. They did have everything written down and had even paid ahead for their funerals. My sister and I have having this experience went and paid for our plots as well. I also have everything written and put in trust and my kids know all my wishes and I have written everything down. It pays to think about death in life so you are prepared. Thanks Jesse for putting this out there as so many don’t have anything written down or have even talked about it with family.

    • Jesse – Great advice. Well written. I’ve forwarded it on to a friend who has a father in the early stages of dementia.

    • By the way, I am grieving and sad, but of there is one thing I can convey, it’s get the stuff in black and white.

      • Dora Rocha Arias

      • March 12, 2014 at 5:40 pm
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      No words I can say, you said it all. I know that your time with mom was precious and giving her the opportunity to put what she felt in writing is priceless.

      • Darlene Bustamante

      • March 12, 2014 at 6:26 pm
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      Agree completely with you. Dying is part of living, we all get there eventually. Getting it in writing put her in control. She was very thoughtful of all of you. You were a terrific daughter Jesse. When our parents are vulnerable, we see them differently in that we can respect all their life experiences and can appreciate their tough decisions made while we were growing up. I`m proud of you Jesse, and you know what, you are a terrific mom yourself. Crystal is a beautiful, young woman, and passing on her learned mom-skills. Thanks for sharing your heart

      • Jill Mulcahy

      • March 12, 2014 at 7:42 pm
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      Jesse- so well written and such great advice for those that are facing this disease in their own families. I love your description of how crafty those suffering from this can be with doctors, lawyers, care takers, etc.
      Your advice is so practical and hopefully many will follow this. It is tough, just like taking the keys away when people should no longer drive, but these tough decisions are done with the best of intentions and help with details.
      My thoughts are with you.

      • Adela Trainor

      • March 12, 2014 at 9:54 pm
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      This is good and “real” advice–I completely agree. We shouldn’t be afraid to have these conversations with our loved ones…then put it in writing!
      Your mom meant a great deal to me. She had an amazing strength about her…I truly admired her. I loved her wit and her earthiness. What a woman!!!

    • Suffice it to say that I loved my mom too. She was a tough woman before dementia, and becoming vulnerable to scams, and not remembering where money went, were all hard to watch. We protected her. I also want to mention what I meant by “ridiculous, self-involved feelings”. It’s easy to project our own needs onto people. Mom needed a quiet, loving, calm, peaceful space with loved ones around. We didn’t “Grieve onto her”, we celebrated her. We thanked her. Maybe that’s a different column. Jesse

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