29 years a caregiver and counting…

(caption – I chose this photo of his palette for this piece because painting became everything to him. The colors on it are the colors of our life – the lights, the darks, blues, reds, yellows, the scratches on it, the movement on the board…I bet many of you could see your lives in these colors as well.)

Recently, I had the lovely opportunity to attend the 10th-anniversary celebration of the Elizabeth Dole Foundation’s Hidden Heroes Gala. I haven’t been outside of the area in which I live since late 2019. The pandemic and my husband’s ALS progression have kept me close to home, until this week.

When I was at the Gala I thought about how long I have been a caregiver. In October 1993 my husband contracted encephalitis. He was terribly sick for months. After the acute infection was taken care of we realized there was still something wrong. Turns out he had encephalopathy with cognitive impairment. His cognitive impairment is in the executive functioning part of the brain. It rendered him disabled from work.

In 2010, he was diagnosed with service-connected Amyotrophic Lateral Sclerosis (ALS), also known as Lou Gehrig’s disease. He served in the Marine Corps from 1972-1975. In 2008, ALS became presumptive for those who served in the military. This year, we learned he has Frontal Temporal Dementia (FTD) with aphasia along with ALS. It is my understanding about 50% of people with ALS will develop this form of FTD.

We have been married for forty-two and a half years. I have been his caregiver for twenty-nine of those years. It wasn’t until 2013 that I identified as a caregiver. I never thought I wasn’t one. It just didn’t occur to me that I was one. I was doing what needed to get done. In 2016, I became an Elizabeth Dole Foundation Fellow representing NC as a caregiver.

Getting it together to attend the Gala was a challenge. It went something like this:

a. He will go with me. He wants me to go. He doesn’t want anyone else to take care of him. We will drive to D.C. We will stay in a hotel that is handicap accessible. Everything will be fine. He will have his power wheelchair to get around the city when I am doing things with other caregivers. He will be fine. I will find a way to have a hospital bed brought to the hotel so he can have a bed similar to the one he sleeps on nightly and have the three hours a day he needs to rest and use his breathing machine with comfort. I’ll find a useful shower chair. I’ll figure it out. I will be fine. We will be fine. Or will we? It feels like a lot.

b. Ten days before we were to leave for D.C. he said the points on his behind hurt when he is in his wheelchair. The cushion is no longer useful. He couldn’t get comfortable on the short drive to the store. I asked if he would be able to tolerate the six-hour drive to D.C. and all the hours in his chair while we were there and the ride home. For me, he didn’t want to say he wasn’t going to be fine. I pulled it out of him. If he got pressure sores on this trip it would not be worth it. I would not be fine. He would not be fine. Scratch the trip.

c. I let my daughter know we were not going. She was going to care for our dog when we were gone. We texted back and forth. I told her there were no solutions to this. She was not fine with it. She surprised me by coming over with flowers and said go. She’ll take time off to care for her dad. We figured out the logistics of what would work best. She put in for a substitute, she’s a teacher, and I booked flights. I was gone for forty-seven fantastic hours. She’s my hero. She was fine. I was fine. He was fine. We were, and are, all fine.

I cried with joy during this respite. My heart is so full.

The Elizabeth Dole Foundation saved my life on some levels. For all of the years prior to becoming a fellow, I was alone as a caregiver. I knew other caregivers tangentially. None were friends. I had a nearly non-existent support system. I kept myself busy for years pursuing degrees and working. I guess you could say I was my own support. It’s been much better to have friends who have become like family. It’s been healthier to have a peer group, to be seen and heard on those difficult days, to have people who love me hold space for me and me for them. Senator Elizabeth is extraordinary as are so many caregivers. I salute them all. This is the first time in a few years I have felt at peace with this caregiver life. I am celebrating twenty-nine years as a caregiver with the highest of high fives possible. I see more successes than failures. I see love.