A role reversal in our marriage: Becoming a caregiver

By Janet Tarbutton 

My name is Janet Tarbutton. I live in Liberty Lake, WA with my husband, Alan. We were high school sweethearts in Orange, CA. We went to rival town high schools and met at church. We are celebrating 42 years of marriage in July 2020. We love to travel, play golf and be outdoors as much as possible. We have so many wonderful memories to recall, it would be the size of a novel to write them all down. We have a wonderful, supportive family, which consists of three sons, three daughters-in-law and six grandkids. We all live close by to each other, and our gatherings are many and very noisy to say the least but we love the “good” noise.

We moved to the Spokane area in 1988 after Alan decided to take a job transfer from Orange County, CA. We had three small children at the time, and we wanted to raise them in an environment surrounded by nature. We wanted them to appreciate the outdoors and less populated activities.

I was mainly a stay at home mom for many years, raising our sons Ben, Scott and Mark. The house was always busy with the comings and goings of children. I did have part-time employment throughout the years, such as an EEG technician, veterinary assistant, a land use planner and classroom aide with the school district. While our two oldest boys were in college and the youngest in high school, I decided to go back to college and get my Master’s in Elementary Education. After graduating, I started my passion career for the next fifteen years. I taught kindergarten and first grade children in poverty schools. This was such a rewarding career with so many amazing memories. I retired in 2016 soon after our journey with Alzheimer’s began. 

Alan was an electrical engineer project manager. He managed 15 engineers and worked long 50 hour work weeks, sometimes into the weekends. Alan started to show signs of dementia at the age of 58. 

I started noticing that he was having trouble keeping up with his work. He was unable to remember phone conversations and took so many notes. Also, he was experiencing tremors; so taking and deciphering the notes were becoming difficult. His stress level was off the charts; he wasn’t sleeping and was getting irritable. Alzheimer’s runs in Alan’s family, and I was starting to make that connection. 

At the time, we were living in Everett, WA, and started the process of getting Alan diagnosed at the University of Washington. After a PET scan, it was finally confirmed what was happening. Alan was diagnosed with younger-onset Alzheimer’s in March of 2016. Alan decided to leave his job of 38 years on disability. This was a difficult time, since his job was his identity. Alan knew so well the progression of this disease from his grandmother, mother, aunt and uncle. It was a sad and trying time in our life.

Our relationship since Alan’s diagnosis has definitely changed over the last six years. We now have role reversal in our marriage: I, the caregiver, am now the main person for all the decisions in our life.

Being a caregiver is a role that I don’t thoroughly enjoy, but I am embracing it for what it is. I have learned over the years that Alan is doing the best he can with what his capabilities are at the present. He would love to contribute more if he could and I must not expect more from him. I have learned he must have a purpose with his life, being it small household chores, walking the dog or maintaining social gatherings. He needs to see how he can complete some positive accomplishments regardless of their size.

This journey is not easy, not pleasant and absolutely not wished upon anyone. It is difficult to watch your loved one decline with their skills of independence. My advice, for whatever it is worth: be your loved one’s advocate, be their voice! If you need something, you must ask for it. We must create our own environment that works best for your relationship and for your family.

We have encountered a great deal of support through the Alzheimer’s Association in the Spokane area. We belong to support groups, continue to attend education programs and have established a group of people that understand this journey first hand. 

Lastly, caregivers please be kind to yourself and do not feel guilty asking for help. You are amazing!

3 thoughts on “A role reversal in our marriage: Becoming a caregiver

  1. Wow, what a story, sounds similar with my wife who has EOAD. I used to depend on her memory to recall certain events, but now that’s all lost. I hope for a cure for your husband.

Leave a Reply