My Journey with Alzheimer’s

 

My Name is Gary Fuquay.  My Mother was Proud, private, loving, extremely devoted Christian. A wonderful Mother. I have 3 siblings, all living in NC.

My father died of cancer 10 years before Mom show signs of dementia.  It was a short timeframe between diagnosis and his passing.  12 days.  My siblings and the church family rallied around the family. I will tell you later in my story why I mentioned my father.

10 years after Dad passed Mom started having symptoms that were troubling.  Forgetfulness, repetition in the conversation, accusations of someone taking something or short outburst of anger with mild cursing.  Something my Mother would have never done.

I got asked by my siblings to approach Mom about our concerns and ask if she would be willing to go to the doctor.  Long story short, it was one of the most difficult conversations I have ever had, but she finally agreed.  I first took her to the General Practioner and then a referral to a Neurologist.

End result of all of the MD visits was a diagnosis of Alzheimer’s and we were handed meds and told to come back in 6 months.  Mom was angry at me and angry at the MDs.  Rough several weeks.  Not once did either MDs ever offer us any education and knowledge about resources for the diagnosis.  Not once did they inform me:

  • of who to call,
  • what to read,
  • what the next steps were,
  • what to watch for/be careful of or expect.

Did I ask that day?—no, I was too shell shocked at the time.

I mentioned my Mother was very proud and private.  That night after the diagnosis she begged me to do 2 things:

  1. to not tell my siblings or anyone in the community of the diagnosis and
  2. she begged me not to take her out of her home.

She didn’t want anyone to know.  I agreed to a point.  I did tell my siblings.  I had friends whose parents had some form of Dementia, but quickly realized I was terribly uninformed.

This is where in the journey of Alzheimer’s/Dementia that you QUICKLY figure out what people are made of.  Without getting into too much into the details,  we saw that many of Mom’s friend were concerned, but frighten of getting involved due to lack of knowledge on their part and also some unpredictable behavior on my Mother’s part.

Medication adherence was a problem from the get go.  We would fill up her daily pill box with all of the meds, but we found pills in the sofa, patches (Namenda) in the trash or hidden in a drawer. All of the time, Mom would insist she took the meds and got angry when asked.

We started to notice new activity:  Strange items started to arrive via the mail or delivery truck.  We had jewelry arrive, bed/mattress arrive, Utility bills went missing, checks written for sweepstakes, gift cards purchased to mail, so a sweepstakes award could be made.  On and On.

Ultimately we ended up having to cancel the house phone, redirect the mail to the city Post Office, take her check book away from her, put all bills on automatic pay and the ultimate and horrible—take the car away.  On and on.

I had heard of the National Alzheimer’s Association and had heard of Dementia Alliance, but really had no idea what they did.  I figured it was all about funding research.  I now know that as for DANC, boy was I misinformed.

A good friend of mine gave me a book that was an eye opener for me.

The All-Weather Friend’s Guide to Alzheimer’s Disease: Staying Connected to Loved Ones with Dementia and Their Caregivers  by Mary M. Cail.  It was the first book I had read about the disease and it offered me a guide of the stages of Alzheimer and what to expect as my Mother progressed to the next stages.   I thought I had a handle on the disease and was ready.  I purchased 3 other copies of the book and gave them to my siblings.

I am ashamed to admit that we allowed Mom to stay by herself too long.  I finally realized we had to have someone with her for limited times during each day.  For medication adherence, for meal preparation, for transportation, for socialization.

I began the journey of this disease thinking that I could care for my Mother myself with some assistance from my siblings.  I quickly realized with the disease progression this was not sustainable.  We made an appointment with a home health agency and began the journey of finding the right person to help with Mom.  I went through 4 individuals before I met an Angel.  Her name was Ann Hunt.  Without her, my siblings and I would have never been able to care for Mom at home.  Over time Ms. Hunt gave so much of herself to caring for Mom and through her network of CNAs, we ended up hiring 6 individuals to help care for Mom 24/7.

There were many sad days for me and many nights I just prayed for God to show me the way.  I didn’t really know what I was doing, but I listened to my Angel Ann Hunt and did what she told me.  I did things that I never thought I would and quickly became well versed in the impact that UTIs can have on someone with Alzheimer’s.  The UTI kept coming back and each time Mom slipped further away, never really recovering health or memory wise.

Through the next several years, my Mother forgot who I was, or thought I was her husband or that I was just a nice friend.  As time passed, she grew anxious and fearful and wanted to go to the home of her childhood. This became a constant issue.  Many a day, I would pack Mom up in the car under the pretense of taking her to her home.  We would ride around for 15 to 30 minutes and then I would say, let’s go home and would take her back to her current house.  She was happy.  That would make her happy for a while, but then it grew to only making her happy for 15 minutes after we arrived back to her house.  Some days I would take her for rides multiple times a day.

Looking back, there were some funny times.  I would fix her dinner and clean up the kitchen after we ate.   I would place Mom in the kitchen with me while I cleaned up.  On many occasions, I would finish the cleaning and Mom would say—What’s for dinner?”  She would forget that quickly that she had already eaten.  If a dessert was in the house, I would find Mom eating pie or cake in her bedroom.  The woman loved her desserts and I ended up having to hide as she would eat an entire pie in one sitting. Another was that she would forget I was in the house and each time was so happy to see me.

I found that music was my savior.  She loved spiritual music and playing them would calm her, occupy her and bring joy and a smile to her face.  Even when she didn’t know who I was, she could remember each and every word of a song she had sang in church as a young girl.  She was happy and content.

From beginning of this journey till she passed away was almost 6 years.

Overall, the lessons I learned are:

  1. We need to work with the Medical providers to help families/caregivers connect with resources and entities that can provide assistance, guidance and navigation in their journey. Just handing us medications isn’t enough.  I also am still stunned at how the MD’s would talk about Mom and the disease right in front of her as if she didn’t exist.
  2. You can’t do this all by yourself. Don’t be afraid to ask for help.
  3. Music is a powerful tool in the care of these individuals. I can tell you I will be eternally grateful to Tennessee Ernie Ford as he entertained my Mother for hours.
  4. Never miss the opportunity to tell your loved one you care

Of all of the things accomplished in my life, both work and personally, I am proudest of how Mom was cared for and allowed to remain in her home.