In honor of National Family Caregivers Month, we asked local caregivers to tell us what they are thankful for. Caregiving comes with many challenges, but there are also many bright spots along with way. We are inspired by the resilience and positivity of the caregivers we serve. Thank you for sharing your stories with us!
Amy Thomas — Seattle, WA
(pictured above with her mother Joann)
“My name is Amy Thomas and I live near Seattle, WA. My mom Joann was diagnosed at age 54 with early-onset Alzheimer’s. It has been over eight years of walking alongside her down this difficult, tragic road. As we approach Thanksgiving, I find myself reflecting upon what I’m thankful for in the midst of this “long goodbye,” while carrying so much never-ending grief.
I am thankful to be able to care for my mom who always cared for me. To see life, love and joy in her eyes even though she can no longer communicate. I am thankful for the people who have stepped up to help us along this journey and for the many people we have met along the way. I am thankful for the opportunity to recognize the positives even while walking with sorrow. By purposefully focusing on this perspective, I have been able to deeply love and care for my mom and share her life story with many people. In doing so, I feel I have been able to honor my mom and carry on her ultimate purpose in life which was to live a life that reflected God’s love. By wholeheartedly living this way, her hope was that those around her would come to know Jesus. I have strived to carry forward that purpose by focusing on the many blessings we have received throughout her journey.
There are still deep lows and incredible pain, but I’m committed to not allowing those to win. In the end, I have chosen a positive perspective in order to honor my mom, to love her and to carry forward her ultimate purpose in life so that it is not ended by Alzheimer’s, but strengthened by our testimony and the journey we have shared together. So in this season of thanksgiving, I am deeply thankful for the faith and hope that was modeled to me by my mother and my ability to choose to be joyful and recognize the many blessings we have received along the way.”
Craig — Bothell, WA
“I’m thankful for my life. I admire my wife and all the people who love and care for her. I’m thankful for all the help, caring and concern generously shared with me and others through the Alzheimer’s support group, which saves my life once every month. The Alzheimer’s Cafe we attend each month, where we sing and embrace the lovely caregivers and victims of this tragic disease. I’m especially thankful for Alice, Erica, and Michelle who help me remember to care for myself, while guiding me away from a self-destructive, downward spiral. I’m thankful for all the things of beauty that surround us each day. It reminds me of the Mason Williams song:
Isn’t life beautiful
Isn’t life gay
Isn’t life the perfect thing
To pass the time away”
Anonymous — Mukilteo, WA
“I’m thankful that your staff at the Lynnwood office are so friendly and helpful. Last week I was late for an appointment with the elder law attorneys and forgot their contact information. I stopped by the office and they provided everything I needed and also gave me a beautiful padded purple envelope for paperwork, fortifying candy and a big hug.”
Jean — Lynnwood, WA
“I’m certainly thankful for you and our support group. My darling husband, Russ, passed last Sunday morning and I’m more than grateful he’s no longer so confused and agitated. He’s surely in a good place now. He was an amazing husband and father. I’m thankful we had 56 wonderful years together. The biggest blessing is that he wasn’t in pain.”
Pat Ferriola — Coeur d’Alene, ID
“The question, ‘What am I thankful for?’ is pretty easy for me to answer at this point in my journey. It would have to be the Alzheimer’s Association support groups. As family and friends tend to distance themselves from the dementia patient and family caregivers, the people we meet in these groups become our new family and friends, and that includes the wonderful facilitators. I cared for my husband at home for five years (24/7/365) and placed him in memory care in May. They were with me every step of the way! We laugh together, cry together and hold each other up. I am so thankful for my new family and friends.”
Vicki — Shoreline, WA
“What am I grateful for? I’m grateful for the Alzheimer’s diagnosis for my husband. What, you say? Well, I guess you would have to understand what was going on before — how I was feeling crazy about not being able to cope, how I was feeling rage every day as my husband of 25 years was being less and less willing to go along with the program.
Over the years, it had become evident that my husband, a very intelligent manufacturing engineer, was just basically clueless about a lot of things. I could deal with that, but then he quit wanting to do things we had always done. I was frustrated with never actually doing the things he talked about wanting to do. I was beyond miserable. I was in a constant rage. Why is everything such a battle? Why doesn’t he ever DO anything? Why can’t he ever see my point of view? Why does it always have to be HIS way? Even when his way isn’t the best way? When did I start feeling like I could figure things out better than he could?
Then at a routine checkup, the doctor said we should check him for Alzheimer’s. That made sense, but I certainly didn’t want that diagnosis! What is the point? So what if he has Alzheimer’s? There isn’t really anything very effective you can do about it. It would just give him one more thing to be depressed about. I didn’t act on the recommendation for awhile. Then, of course, it took awhile to get an appointment with the neurologist, then tests, and about a year later, the diagnosis was probable Alzheimer’s disease. They told me there isn’t really a conclusive way to prove Alzheimer’s prior to death and autopsy, but when there’s measurable dementia, and all the other causes are ruled out, Alzheimer’s is what is left.
That’s when I started learning about Alzheimer’s disease — reading books like “The 36 Hour Day” and “Still Alice.” I also started learning about resources like educational programs, counseling and support groups. I started learning how to cope.
Then the grateful part started. I started to see that “cluelessness” was perhaps not just inattention, but a coping mechanism. I started to see that there was no way he could be empathetic to what was going on in my life, when he wasn’t even aware of his own. The rage dissipated as it became obvious that he was not doing things on purpose — he couldn’t do what I expected. I learned about confabulation and anosognosia.
As I was able to move away from expecting him to remember things (like turning the hot water off when he was done washing his hands), the rage melted away. Instead of feeling unloved and unappreciated, I felt grief for the man I used to know. I felt grief for the partnership we used to have. Instead of feeling stuck, I could see there were changes that needed to be made. I started to understand the level of responsibility I needed to assume, to make decisions normally made together.
Yes, I am incredibly grateful for all the friends, family and professionals who participate in this journey with me. I am grateful for the programs, organizations and facilities that help me deal with this — but without the initial diagnosis, none of the rest of this, which has truly become my life, would have been possible.”
Do you have a story that you would like shared on the ALZWA Blog? Email us at socialmedia190@alz.org and let us know!