Lessons from a Caregiver

sisters Dorothy & Mary (3)

Martha Stevenson Wright

From loving daughter to dedicated caregiver, author Martha Wright shares her experiences from six years of providing care to her mother who was living with Alzheimer’s disease. A member of the Piney Creek Chapter of the National Society of the Daughters of the American Revolution team for the Denver Walk to End Alzheimer’s, Martha shares her insights and lessons learned.

When it starts, you are oblivious.  When it’s happening, it’s unreal.  When it’s over…well, it’s never really over.

Several years before I realized that my sweet mother was ill, my parents would joke about the funny play on words “old-timers,” using it in a lighthearted and playful way.  Or, perhaps, it was actually a way of coping with what they both knew (or feared) was ahead.  The taboo word Alzheimer’s would never be spoken.

In 2002 my father passed away and it was my turn to learn about everything my mother was losing.  It was a shock.  Dad had been kind to keep so much from us but that kindness had an especially difficult sting for me.

I was teaching full-time and that means 6:30 to 4:30 at school, working a couple of hours in the morning and another couple in the evening, at least part of one weekend day, planning and preparing, grading and analyzing, worrying and starting it all over again.  After so many years of teaching and dealing with kids, parents, and colleagues, I was exhausted.  Yet I had no idea how weary I would soon be – physically, mentally, emotionally – exhausted to the very depths of my soul.

The diseases of Alzheimer’s and dementia are different for everyone so each person’s experience is unique but here are some things that I do know.

FIND HELP:

Especially the help of someone who knows because they have been through this long journey.  I was so busy with children, grandchildren and students that I did not seek help, and I regret that.  I felt so alone.  I couldn’t talk to my mom about my problems anymore.  My husband was very understanding, but she wasn’t his mom.  We had a great doctor, but this was not his experience.  I needed someone who actually knew what it felt like.  I stopped by to check on my mom every morning before going to school.  After working all day, before going home and making dinner, I stopped by to see her again, at first when she was still in her own home and later in a care facility.  I told myself I was too tired to do any more after a long day, but reaching out and finding just one daughter like me – even once – would would have made a world of difference.  Being tired or lacking time do not compare to the healing power of the human touch.

READ:

Anything that will help you to cope.  The Long Goodbye: Memories of My Father by Patti Davis, Chicken Soup for the Soul Living with Alzheimer’s & Other Dementias by Amy Newmark, Mom, Are You There? Finding a Path to Peace Through Alzheimer’s by Kathleen A. Negri, and The 36-Hour Day: A Family Guide to Caring for People with Alzheimer Disease by Mac and Rabins are all excellent resources that I wish I had discovered sooner.  I had used books for enjoyment and to learn about the world all my life, yet it did not occur to me that I could get through the worst experience in my life just by reading.  Sharing the experiences and knowledge of others through reading would have helped so much to feed my depleted soul.

LOVE:

Just like you always have, or even more.  Little daughters hug their mommies and need their mommies and want to grow up to be just like them.  Grown daughters still need their mothers to learn from and share their own grown lives with.  Life is beautiful when it continues in this way until the end.  But when it does not, the roles can be reversed and the daughter becomes the mother.  It happens slowly and with difficulty, mostly because no one tells you how.  Over time, I learned to do things I had never done before: read to my mother, help her get dressed, talk in a way to bring back the happy memories.  What I did not do – what I will forever regret not doing – is learn to listen more without embarrassment.  There were many times that Mom did or said something wrong or funny and we would both laugh at that.  But we rarely talked about her feelings and fears.  Talking more, and more honestly, when we still could, would have been best for both of us.  Talk more, listen more, hug and kiss more, and later you will have more warm memories for yourself.

DON’T FORGET YOURSELF:

No matter how difficult your journey, you need to do things for you.  I neglected exercise, healthy eating, getting enough sleep, and doing the things that I like to do.  Some of this was inevitable because that’s what women do.  When you are raising a family and working there is so little time left for you to take care of yourself.  Yet all those people who you love need you to be healthy more than anything.  One of my most memorable moments of the six years that I cared for my mom was very near the end.  About six months before she passed away we started hospice care.  I learned a lot about professionals when the hospice team took over.  They knew exactly what they were doing and were kind but also frank.  Through tears I told the doctor how guilty I felt if I did not stop by after work to visit Mom every single day.  He explained to me that she was at a point in her disease where she did not experience time and really didn’t know if I had skipped a day.  Well, then the floodgates opened up and relief took over.  I hadn’t known how really sad and guilty and tired I was until I was told the honest truth.  I felt like I could breathe, or maybe even do something for me.  Make a daily goal: take a walk, practice a little yoga, make something delicious or fun, or just do nothing!

GET HELP WHEN IT’S ALL OVER (because it isn’t really ever all over):

The saying “time heals all wounds” is only partly true.  When my mother passed I was, of course, still busy.  Ultimately, it was a relief, but a relief accompanied by such sorrow and regret.  I wish that I had used some of my “extra time” on speeding up the healing of my heart.  If you did not get help or counseling or whatever you needed then, get it now.  Find others who share your experiences if you have not already.  Read more about the whole process, including how to heal at the end.  Choose something that you couldn’t do before and do it now.  I think that a common fear for many people is to end up with this dreadful disease.  For those of us who experience it so personally, the fear is painfully real.  Although that fear can fade somewhat over time, it is always there.  I learned to heal with help from others, including lots of reading about maintaining a healthy lifestyle, but learning what you need personally is the secret to healing.

DO SOMETHING IMPORTANT:

I do believe that there is nothing more profound than personally finding out that there is really only one thing that makes us who we are.  Riches come and go, people fall in and out of love, we age gracefully or we wrinkle and go gray.

But at our core we are the one and only person on earth exactly like us.  Our lives are all different, our heritage is our own, and each story is unique.  With dementia, all of that is slowly lost.  One day at a time we find we cannot do things we used to do, we cannot find the words that express what we so desperately want to say, we cannot remember where to go.  Eventually, we forget the names of loved ones and, finally, in the cruelest twist, we cannot remember who we are.  Everything that ever mattered is gone.  Yet, it becomes clear that the only thing to do to fight this thief of life is to do good – help a little old man across the street, write a book, or place a wreath on the grave of a soldier.  Only you will know what to do, what matters, what will express the real you.  Think about it.  Decide what to do and do it.

One more thing, go ahead and write about it like I have here.  Nothing is worse than keeping it all on the inside.  So many of us don’t want to complain or burden others so we push it aside and soldier on.  I have not talked about the worst experience of my life in over eight years.  I cried once more as I wrote all of this down on paper and it feels so very good.

Marth is walking in the Denver Walk to End Alzheimer’s. Please consider donating to her team. 

The Alzheimer’s Association of Colorado provides a broad range of programs and services for persons with a dementia diagnosis as well as their caregivers. To learn more about services for caregivers, click here. For details on Caregiver Support Groups or Early Stage Groups, click here or call the Alzheimer’s Association’s free 24/7 Helpline at 800-272-3900.

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