Carer Corner

by Cyla Rouch


I got the pleasure of being Kristi Curtis’s caregiver for about a year and a half.  When I got the call to help someone with NA, I had no idea what the disease was, much less what kind of condition she would be in when I went to meet her.  All I knew is that she was a 60 year old who was bed bound and lived at home with her husband that had to go to work daily.  To say I was nervous on my first day is a huge understatement!  Kristi was bound to bed and had little to no control of her body.  She did have limited movement of her right arm (as she would say, just her luck as she was naturally left handed).  She was also nonverbal.  She used a letter board to spell out her words.  It took a couple of days for us to settle into a routine.  We would start everyday with me washing her up and brushing her teeth.  I would then rub her hands and feet with lotion, taking as long as she desired!  


That was the first thing that we bonded over, our addictions to good smelling lotions!  Her left hand was completely curled up, but we couldn't skip that hand as it would be jealous!  Her right hand was curled Except her pointer finger.  She would diligently make sure that her pointer finger was laid out straight all of the time, even when she slept!  That was Kristi’s only means of communication.  She would sit for hours on her ipad and email/text friends.  It would take her so long to complete a simple reply to her family and friends, but she reached out to all of her supporters on a daily basis.  That was the only thing that she could do independently.   


I quickly caught on to using her letter board.  It takes a lot of open minded thinking.  I would sometimes mess up a word or two!  That would get her giggling every time.  We would sit and have conversations that way for hours.  It was her way of letting me get a glimpse into who Kristi was.  We got very close very quickly.  We also used the app “talk for me”.  It is an app that you type something in and it says it for you.  She absolutely loved that.  


Kristi was also on a feeding tube.  She had been bed bound and on the feeding tube for more than 5 years total.  She got her medications through her tube as well.  We would swab her mouth with water after brushing her teeth and throughout the day as her mouth was really dry.  We would apply chapstick multiple times a day as well.  She had every flavor we could find!  She could no longer swallow anything and had gotten pneumonia several times before receiving the feeding tube.  She would use a bedpan or a bedside commode.  She was on a set bathroom time routine.  


She would sometimes get in her wheelchair when she did facetime or zoom calls.  We had gotten her some leg pillows so that we could prop her legs up or her arms.  It seemed to help with the uncomfortableness and possibly with circulation.  I would fluff her pillows and get her nice and cozy with her many blankets as she was always cold.  We would move the pillows multiple times during the day depending on where she felt she needed them.  She got a bed heater that set on the end of the bed and blew warm air under her covers.


Kristi did struggle periodically with depression throughout her time with NA.   Most of the depression came about with the covid-19.  She was unable to have the regular visitors that she was used to having.  She told me on one of her depressed weekends that it was bad enough to be stuck in bed physically, but to have all your thoughts and no way to get those thoughts out was even worse.  She would say she felt like she was in a horrible nightmare that she just couldn’t wake up from.  Mentally she said that she felt like the same person she had been before this nasty disease took her body over.  She said it was like being trapped inside your head with no way out at times.  


I got to help her plan all of her end of life events.  We went through all of her pictures starting with the ones of her being a beautiful baby.  To see her through the years in pictures really gave me a bigger look on all the things that this disease had taken from her.  She told me about her college years, falling in love with her husband, and the two kids that she was so proud of.  She told me how she had a granddaughter on the way when she made the decision to have the feeding tube placed.  She was most proud of her granddaughter!  She told me of all her jobs that she had in the past.  


Kristi loved life, and even though NA robbed her of her physical body, she still had the sharpest mind of anyone I've ever known.  Her personality was amazing everyday.  She smiled and laughed with me (not at me) daily.  She had the most compassion and would worry about everyone else instead of what she was going through.  She most loved birthdays and holidays.  Christmas was her favorite time of year.  She could give people gifts and see their smiles as they opened up the gifts that she picked out herself online.  She used Amazon all of the time.  She never missed sending birthday cards to all her friends and family.  

Kristi hadn’t been outside for a long time.  I asked her what was one thing on her bucket list that I could help her accomplish.  She stated that she wanted to go for a convertible ride and be like Thelma and Lousie on the run.  She wanted to feel the sun on her face and the wind in her hair.  With the help of a family friend and the local fire department, we got Kristi in a shiny blue mustang convertible!  The smile that she had on that day was never ending.  


Kristi gained her angel wings in June of this past year.  She was only 62, and had fought this disease since she was in her late 30’s/early 40’s.  She made the hardest decision I personally think anyone could ever make.  She decided to stop her feedings.  The disease was starting to affect other things like her eye control.  There were times that she just couldn’t get her eyes to even open.  She started having major issues with her sight as well.  She was starting to lose control of her bladder and bowels. She was having an even harder time swallowing than she had before.   After talking with her doctors that this was progression of the disease and having a therapist evaluation to make sure she wasn't making this decision based on depression, she chose to stop fighting this.


Kristi’s most valued and last wish was to donate her brain for research.  She wanted to help other people even after she was gone.  Her hope was that they could maybe learn something from her donation that could help someone in the future.  


That is now my hope as well.  Not ever hearing of this rare disease even after medical school and working in the field, I hope someday that nobody will have to live with this evil disease.  It steals so much from innocent people, and it seems like it just starts taking things without these people even knowing that they have it.  It took years for Kristi to get this diagnosis.  She started out having occasional seizures.  It then progressed to her swallowing issues, and her falling all the time.  She went to so many doctors and never walked away with any answers to why her body was failing her.  I know that at some point, one of the doctors recommended that she see a psychologist as they couldn't find anything wrong.  What that had to be like for Kristi.  How awful that must have been.  I'm sure others have been through a similar situation until finally receiving the right diagnosis.  Kristi said that it was one of the worst days when she received her official diagnosis, but at the same time glad, because now they knew that she wasn’t going crazy!


My heart and prayers go out to all who are affected with this disease.  I will continue to bring awareness to NA, because someday I hope that there will be a cure.


One lucky caregiver,


Cyla Rouch

Indiana, USA

Kristi with friends

From Left to Right her mother Paula Ringo, Kristi and her sister Kerry Huff.

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