November is National Family Caregivers Month, a time to raise awareness about the role of family caregivers and recognize their support and selflessness. Many people with essential tremor are supported by a loving caregiver who assists them with daily tasks and provides emotional support as well. Sabrina Pilarski is a caregiver for her husband, Tom, and shares what that means in this blog post.
By Sabrina Pilarski
Caregiver
For better or worse, with shaking hands or steady.
When you’re married to someone with essential tremor (ET) you are not an instant caregiver. At first you are a friend or fiancé or spouse. You support and encourage. The role develops slowly and gradually. You help with the occasional spilled coffee or sloshed over glass of pop. You see the attack of the taco or tostada onto a clean shirt or the splat of a piece of pepperoni off a plate of spaghetti. You are the one who fills and carries the plates at the wedding buffet. You realize that toasting with a glass of wine or champagne at a birthday celebration should not be encouraged as it is not going to turn out well.
While it begins as an inconvenience it may eventually become the cause of life altering events.
My support in those days was of encouragement and support of his chosen profession. Tom’s career was as a graphic designer. The tremor was not severe. When he was in his 30s his physician told him that he probably had familial tremor. Likely inherited from his mother’s side of the family. She did shake. As did her brother, his uncle.
Computer graphics took over the work of design on the drawing board with marker, paint, pens and ink. And that was a blessing for a while. Eventually. though the control of the mouse was an issue. His work began to suffer and his employer, well, was not understanding with the time every project took to complete.
Everything someone does with ET takes a few seconds, or minutes, or more, longer than it takes the rest of us. If they can even manage at all!
Tom decided to have Deep Brain Stimulation (DBS) surgery in 2010. But his surgery was not as successful as we had hoped for and one year later he found himself no longer able to fight the work challenges and he stopped working.
Time and life goes on.
Tom had carried the medical benefits for us for the past 35 years. I changed jobs to be able to carry medical benefits for both of us. A challenge at the age of 55. But it was a blessing in disguise. I was fortunate to expand my horizons, work in hospital health care, and provide care to underserved and special needs patients while assisting post graduate dental residents on their journey. I loved this job. I was thankful every day for this opportunity. I retired happy at 65 after 10 years of participating in a hospital dental program.
At home I became the pair of hands that did not shake. I am a retired dental hygienist and my hands are steady. Thank goodness. Slowly I was needed to manage more chores around the house.
I need to add that Tom’s vision is also greatly affected by glaucoma. I go with him to all doctor appointments. No matter if we complete the forms online beforehand there is always going to be more paperwork at the appointment. So, we fill out the paperwork together.
I have learned so many new skills. I learned how to use a stud finder, drill holes and drive screws. With Tom’s instruction I was able to put a safety bar in our bathroom. I put in a ring doorbell camera outside the front door. I know how to change ballast in fluorescent light fixtures wiring for the red, black and white wires. (If you know, you know.)
Tom’s love is railroads. And model railroading. I am becoming an assistant model railroad builder. I now know how to solder model railroad track. And build the scenery and buildings.
Tom and I used to cook together. Not so much now as we don’t want to end up in the emergency room for stitches. We all know that self-care and mental health are very important and there are times when I need to do something by myself, for myself. I work on cross stitch or embroidery. I taught myself to crochet. I’m in a neighborhood book club. I get a pedicure. Nothing extravagant. Just finding a little me time.
After 47 years of marriage, we are a team. We take turns when the need presents itself. In two weeks I will be having a total knee replacement. He’ll get his turn to take care of me. For better or for worse. In sickness and in health. Maybe we should add, with shaking hands or steady.
Oh Sabrina..such a love you both have…such a journey you are on. Thank you for sharing your story.
What a beautiful tribute to true love and commitment.
God bless you , Sabrina and Tom❤️
Sabrina so beautifully written. Wonderful of you to share your journey with others.
Thank you Sabrina, and Bless you and Tom for for selflessly helping others who have
this difficult condition .
Sadly, I have had to give up my pastel painting hobby and now sketch,
( and then paint ,) small watercolor works, just to “keep my hand in.” Strangely enough I find I can manage these, more intricate pieces, without shaking. As for baking and cooking ,well , I agree with you and Tom…it’s becoming too dangerous!
🌌 **Life on Saturn: Embracing the Tremors 🌌**
Sometimes, life feels like living on a different planet—like Saturn. With every challenge, including essential tremors, we find ways to adapt and thrive. Follow a journey where friendship transcends earthly bounds, turning trials into triumphs. 🚀
Reflect as and Sabrina and Tom share their inspiring story of perseverance, love, and resilience. They’ve learned to navigate the tremors, reminding us all that true friendship can withstand any “shakes” life throws our way. 💫💪
#SaturnLife #EssentialTremors #FriendshipGoals #Resilience #Inspiration #StayStrong #ShakingBoundaries #PlanetaryLiving #SaturnVibes #TremorTriumphs
Sabrina, thank you for sharing your journey along the way. You are a blessing, one to the other. Beautiful and necessary. As a single person with essential tremor tapping at the door of my life at age 72, it does make me wonder what is ahead without a caregiver in sight except myself. Taking it day by day, breathing in and out with gratitude, we can appreciate all that we can do for others and in the process, we help ourselves.
What a great approach to making this a journey of looking at what you can do, who you can be, what you are grateful for. God bless you! Do you belong to a church? Communion can be a challenge on days of stress, hurry or tiredness, but being with other believers and knowing God has promised never to leave us nor forsake us is a blessing for those 3am moments of doubt. Please consider getting the book, Jesus Calling. It is an encouraging devotional of hope and is Bible based. I get the large print as it is easier to read. It has been such a help in refocusing my mind when ET gets the best of me. Love, m
Sabrina,
Thank you for sharing your story. Both you and Tom are such wonderful people! I’m lucky to have you in my support group! Tom was a fantastic leader and now Mark has filled his shoes. I wish you the best of luck with your knee replacement. I know I will need one soon (I keep putting things off). I didn’t realize everything you have had to learn how to do to help Tom.
Best wishes to you and Tom,
Elissa and Dan Kline
This is a beautiful story. Thank you for your selfless, caring for your husband. God bless you.
Sabrina, thank you for sharing your story. Sometimes we forget how much work the caregiver has on their plate. I’m so glad that you have learned to take time for yourself and to treat yourself periodically i know my hands have
created many new designs in my carpet or flooring. I’ve even traded out my glassware for really nice, plastic glasses. because I was dropping my drinks. Granted, the liquid added to the designs on my carpet, but that’s not something I want forever. I hope to pull out all the carpets next year.
I no longer have a spouse and now live alone. I do have friends who step in when needed but some days are more challenging than others. I have started to use containers with lids more often so that if I do drop something, it’ll be contained. I do this all the time with my drinks and am doing it more and more for meals as well.
May god bless you and your husband!
Thank you Sabrina for your lovely story. In our family I am the spouse with ET and often forget how hard it can be for the caregiver as many times they have 2 lives to manage. How grateful we are to have a second pair of hands. Bless all you caregivers and your steady hands.
Sabrina…Thank God you have each other. There is always a way to get it done. Prayer helps also !
A beautiful story, thanks for sharing Sabrina. I am thankful to have met Tom and the group when I was struggling with early stage tremors in my 50s. The group shared so much and encouraged me to get the formal diagnosis, which I did. Good luck on your surgery.