12 Things Caregiving Has Taught Me

November 20, 2019

"Do I like crab cakes?"

"What is your breaking point?"

Those are the two hardest questions I've faced in my life and  both stem from the most challenging job I've ever had. I've been my mom's caregiver since 2004 and those questions have forced me to face my biggest fear. I am slowly losing my best friend and shero, my mom, Wheezy.  The reality of life without her was crippling until I started to learn how to accept and unselfishly love the woman who is replacing no-nonsense foreign language teacher who raised me.

She is a survivor! She battled life-threatening asthma as a child and then added spine issues, high blood pressure and type 2 diabetes as an adult. Aging has thrown a lot of doctor's appointments and hospital stays our way, but I thought I had it covered. I built a house that would serve all of her physical needs.

It turns out that at 79 Wheezy is walking just fine, but her memory is failing her. 

I missed a lot of signs at first. There was some truly baffling behavior in addition to forgetfulness.  I chalked it up to normal aging, our family drama gene and her stubborn streak. I suspected something was wrong, but others didn't seem to notice. Then, about five years ago I was slapped in the face with the question that let me know that Wheezy was following in her father's footsteps down that painful path toward total memory loss. As we sat at Amber Jacks, one of our favorite fish camps, my food-loving mom asked me, "Do I like crab cakes?" There was no denying now, but I was determined to fight it. I got busy researching memory loss

I purchased a YMCA membership to encourage socialization and exercise. I bought puzzle books and we took trips to health spas. Finally I was able to get her to agree to take medication to slow the progression of the memory loss. 

Nothing I did seemed to help much. She hated the thought of kids peeing in the pool at the Y, so she stopped going.  She hated my efforts to arrange old people play dates. She didn't like the dietary changes I was making. Church folks were getting on her nerves. She didn't want to visit family in Ohio without me. The dementia was advancing and I felt my world shrinking. Coming home to a house full of smoke after she burned some chicken she'd been boiling for the dog, I realized that leaving her alone was dangerous. Not only had she forgotten she had a pot on the stove, but she was too afraid that she'd be attacked by an intruder to open the doors or windows to let the smoke out. 

Since then there has been a whirlwind of caregivers, counselors and even a therapist (for me). At first I had a do-all personal assistant named Kellie. Now we have Sayya, a live-in helper, Midred and Blondie from Blue Dot Cares home health agency and a memory wellness center she goes to 3 days a week. Work is a catch 22. I need help at home to keep up at work.  The more help I need the more money I need so I'd better work hard. YIKES!  WTVI, Charlotte's PBS affiliate, documented it the story in an episode of "Carolina Impact" recently.

Jazon Terzis did a wonderful job of telling our story, but TV didn't have enough time to tell you what all of this has taught me so far. 

1. Gratitude breeds hope.  Overworked and overwhelmed, I used to get ticked off when I'd moan about caregiving on social media and someone would chime in with "appreciate her now because my mom is dead and you'll miss her when she's gone." I already miss her, but if I don't focus on what I have I'll get too caught up in what I'm going to lose. That's when depression sets in. 

2. Beliefs are real. My mom's brain lies to her. It tells her that the door bell is ringing at 2am and that she's cold when its 90 outside. My brain can lie to me and tell me that our situation is hopeless. It isn't. There is as much joy and love in this journey as I'm willing to seek.

3. Don't try to do this alone. I have to ask for help and accept it when it is offered. When I need a break I have to ask for assistance. Friends, relatives, neighbors, church members, club members. My neighbor Jani has sat with mom while I worked. My cousin Russell has driven down from Ohio to spend a weekend with his aunt and told me to get lost. My friend Rachel has taken mom to the doctor. Mom's Phi Delta Kappa sorority sisters have helped her attend meetings. This independent woman has learned to trust more and admit my vulnerability.

4.  Go with the flow. Disagreeing with mom when she is mixed up or mad and getting upset about things she has misplaced or hidden does me no good. Our live-in helper, Sayya, describes mom as a Sour Patch Kid. Wheezy starts out sour then turns sweet. If I let her sour mood become mine then I'm in trouble. I know it sounds cliche, but with dementia you really do have to "live in the moment." That's all you really have, so enjoy everything you can. Time is something we can't buy. So I'm spending less time keeping a perfect home and more time connecting with people I love. 

5. Give Success. Mom likes to feel helpful and successful. I encourage her to do everything she can still do. She loves doing dishes, folding laundry, walking the dog and feeding the dog.

6. Trust God's plan. I can do my best to prepare for the next chapter, but this journey is unpredictable. I have to trust that it'll all work out. 

7 . Find the right vent buddy. Talking to people who don't understand caregiving for someone who will never get better, only worse,  can be frustrating. 

8.  Share your testimony. Encouraging other caregivers and offering solutions that have helped me always seem to make me feel better.

9.  Forgive easily. I had to forgive mom for all the things she'd done to contribute to her health issues, from mismanaging her diabetes to choosing soap operas and CNN over exercise and socializing. I realized that I had some resentments because many of her life choices made it harder for me to care for her. I've also had to forgive myself for not doing this "perfectly." Guilt can gnaw at me constantly if I let it. The harder I am on myself the more likely I am to expect way too much of other people.

10. Be the parent. My mom had to make some choices for me that I didn't like when I was a child. I didn't want braces, but looking back on my 1st grade picture, I'm sure glad that she paid for them. Similarly, I've had to learn to say "NO" to mom, which is something my authoritarian parent has never appreciated. I must be able to ignore her tantrums to make decisions that are healthy for both of us.  

11. Self care is NOT SELFISH. When I don't take time to nourish myself spiritually, physically and socially, I'm a hot mess. If I'm exhausted and depressed, then I'm getting too sick to be of any good to her or me. 

12. Every day isn't a party. Some days folks you're counting on will let you down. Some days mom's anxiety is through the roof. Sometimes I just have to pause, take some deep breaths and remember that this is just a season of my life. I have no idea how long it'll last. 

That #12 is what hit me when I was asked the second question. During a family meeting at The Ivey memory wellness center I was asked, "What is your breaking point."

Even some caregivers who have siblings and adult children find that residential care is best for the health and safety of everyone involved. I have a friend whose mom pulled a knife on a live-in caregiver because she didn't recognize the stranger in her home.  Another friend has a mom who was hospitalized after mistaking a cleaning solution for a beverage. I don't want to wait for a horrible accident to force me into making a decision about where it would be best for me to care for mom. Make no mistake, whether she is in the bedroom downstairs or a memory facility she'll see my face every single day. I just have to appreciate that she still recognizes my face.... right now