What Do You Say When Someone Asks What You “Do”

I am not sure if that title is a question or a statement. When I became a caregiver, I didn’t know what I was. I didn’t know that I could tell people that’s what I “do”.

As the wife of a man with an invisible disability for many years, I could say for sure what I didn’t do: I refused to become his undercover-unpaid work assistant. I had already made up my mind that if he started leaning on me to get up for work and to edit his paperwork, then that was a sign that he shouldn’t be working anymore.

Then it happened. I could see that my handsome husband, Henry, was struggling to go to work daily. I knew that he would eventually need to retire due to his neurodegenerative diagnosis from several years earlier, but didn’t expect it to start so soon. Our oldest children hadn’t even graduated from high school, yet. Also, I began attending graduate school just a year before this and thought I would have time to finish before he would need to leave work.

So, that’s what I “do”. After 18 years of marriage, I became my beloved’s full-time caregiver and went…

…From Bride to Spousal Caregiver.

~ Donna Marie Johnson, via Twitter @Bride2Caregiver

I remember that just after the New Year, I took Henry to see his neurologist because of the changes that I saw in him, and the doctor confirmed that it was time for us to focus more on his health. He also wrote the word “dementia” as part of his diagnosis for his disability paperwork. I had no idea just how much this little word meant for him, for me, and for our relationship. The doctor offered no explanation of what dementia is, nor of the fact that I would need additional support for my husband and for myself. So, for several months I coped as best I could, but I really felt like I was barely treading water.

My church did not have a caregiver support group at that time, but eventually, I located one at another church about an hour away. It was a group specifically for spousal caregivers and has been a wonderful resource for me. They have been helping me to understand what dementia is, what type of dementia he has, and how to best help him.

Fortunately, we have a generous church community and supportive family who helped us during the financial transition from one income to no income. We were able to get all of the disability paperwork submitted fairly quickly, but, of course, there was a wait for everything to be approved. I am so grateful and give all glory to God for using all of the various people and resources to help us over the years.

Having respite caregiver support has also been very important so that I have time to study and to work on reopening my business. My mother and children have all been very helpful, when they’ve been available. We are currently hiring new respite caregivers who are paid through the CCSP-Medicaid program in our state. This is because the window for family availability to help is closing quickly as everyone is getting back into post-pandemic life outside of the house. Also, for my business, I have an internship trainee program so that I can get more help for my business in exchange for providing free training.

So, I also “do” studying and entrepreneurshipping and parenting and daughtering… lol

What I “do” is complex and dynamic. Some days, it’s also unpredictable.

Mostly, I “do” trust the Lord to help me every step of the way with being the best me I can be to bring Him glory in every area of my life and to love and serve the people He has called me to serve. I especially trust Him to help me with taking care of my sweetheart, even though I feel very inadequate at times.

I also “do” a spousal support group because I need support from other spousal caregivers to help keep me encouraged. How about you? If you do, too, please join us on the 2nd Thursday of the month at 8:30pm EST (Atlanta-New York Time). When you register in advance, you’ll be able to add it to your calendar, and you will receive event reminders and updates. You should see the blue registration button on this page below.