Caretaking is Not for Sissies - My Thoughts on being a Caretaker for a Loved One with Alzheimer's

I cannot take credit for the title of this blog.  It was said to me by a dear friend when she learned of my most current occupation. I am my mother’s primary caretaker; I am with her almost 24/7.  She has Alzheimer’s and is moving from mid stages to late stages.  For those of you who are unfamiliar with the stages of this horrific disease, during mid stage patients have difficulty choosing clothing, are confused about where they are, forget personal history, and the list goes on.  Late stage is characterized by the need for round the clock supervision, assistance with personal hygiene, potential wandering, physical decline… (There are more characteristics for both stages; my aim here is to provide a cursory explanation for those of you fortunate enough not to have experience with Alzheimer’s.)

I also have to throw out another caveat.  I have been thinking about and slowly working on this post for months.  During that time, I came across a very well worded and accurate post on a caregiver’s Facebook group; the author of the post explained the difference between taking care of an elderly mother and a baby (many mistakenly compare the two).  I have intentionally not reread this woman’s post in order to avoid paraphrasing her.  If she happens to see this, I apologize for any similarity in our words.

I expected hard physical labor when I decided I would retire early from teaching and dedicate several years to her care. I also anticipated I would need vast reserves of patience and energy both of which I needed for teaching high school because that isn’t for sissies either, but what I didn’t expect was the emotional and mental effort that would be required. I guess I had a fairytale image of what our future would look like.

I surely didn’t expect how mentally taxing caretaking would be.  Memory is not the only mental function that is attacked by Alzheimer’s; problem solving is quick to disappear as well.  Not only am I remembering and problem solving for two, but I also have to think ahead.  “What if she wanders?” “How do I keep her safe?” “What level of care will she need in two months?”  

Honestly, one of the hardest topics to discuss is our relationship.  I have lived 1,300 miles away for twenty years other than summers north and Mom’s two to three month visits to Florida in the winter.  The combination of her regression to behaviors from long ago and our separation have complicated our relationship, and I am the only one capable of changing behavior and patterns because she cannot even remember my name from moment to moment.  I think I spent my whole first year reevaluating our relationship patterns and learning how to navigate the rough seas of living with someone who has Alzheimer’s.  Trust me, I still don’t have it down and have a stack full of self help books next to my bed, but I am doing better.

One of the positives of this relationship change is being able to break the patterns of the past.  As young adults we take what we experience and learn at home and bring these patterns, insights and behaviors, into our adult own relationships.  Sometimes this is positive, sometimes not.  I brought a plethora of “not” into my relationships when I was younger.  Examining these dynamics now is allowing me to grow and change as a person.  As difficult as it can be (understatement), I am happy for the opportunity because it is bringing me closer to finding myself and developing into my best self.  

Emotionally, taking care of my mom is exhausting.  First of all, watching the disease attack her memories, processing, coordination, and functioning is so distressing. I never know how she will be when she wakes up; she may be anywhere between super confused and shaky to my favorite, grateful to see me and cognizant of who I am and where she is.  Her mood can change in an instant and is much more difficult to diagnose as it is with a baby because the feelings are still as complex as an adult’s, but her ability to recognize, comprehend, and communicate her emotions doesn’t work as it should.  A baby will cry when it needs something; an Alzheimer's patient will tend toward passive aggressive means of attention seeking, which can be crazy making.  

We currently are at the stage where she keeps forgetting who is alive and who isn’t.  We have grieved her parents, my brother, and/or her sisters who are no longer with us almost everyday. In addition, she thinks the pictures of my deceased son are pictures of her deceased son, which adds a different level of grief for both of us.

Do I regret my decision to retire early and take care of her? Over my twenty plus years of teaching, I had some pretty tough classes as every teacher does.  This barely holds a candle to those.  I think they’re even.  I had good moments in those classes where my students learned, and we had some fun doing it.  It’s the same now; I am learning much about disease, end of life, sometimes my mother (she is telling me things I never knew - although they may not be true*), and myself.  And we try to laugh often. No. I do not regret my choice even if this is the second hardest thing I have ever done.

*We can never be sure if what she tells us is the truth.  She has made up some fabulous stories like the fact she mountain climbed in France. She was an avid hiker having done much of the Appalachian Trail and all of the Grand Canyon!  However, she never was a mountain climber in the true sense of the word.   But hey, if she wants to believe she climbed the face of a mountain, I say “let her dream.”