I Focused on Her Love for Me

As told to Open Caregiving and lightly edited to enhance readability while preserving the author’s voice.

Getting to know the caregiver

Hi, my name is Leigh. I’m a Gen X woman from Georgia. I am currently a caregiver for my mom who is in hospice care.

What did your life look like when you became a caregiver?

I was 30+ years into a corporate career making decent money with great benefits. As I approached 50 and my attention increasingly turned towards caregiving, my corporate employer turned on the pressure hoping to have me retire early. It worked, and I walked away after one year of caregiving while trying to work full time.

I then started a string of low paying part-time jobs. After about a year, I was blessed to find a fantastic nonprofit job in a Christian managed company and have amazing flexibility to be a caregiver now.

Who did you care for and what prompted their need for care?

My relationship with my mom was somewhat strained at the beginning of her illness because of some classic mother/daughter clashes. I recently decided that many of the decisions she made when I was younger were out of love, though misguided. I focused on her love for me, let go of every grudge, and forgave everything. I wasn’t exactly the perfect child either.

Now I can care for her, focus on her, and focus on our love. We aren’t perfect, but we try to do what’s best.

My mom has Parkinson’s Plus Syndrome, which is a combination of Parkinson’s and dementia. Those two conditions together present different in every patient and I gather it’s not all that common. There isn’t a lot of lay literature to read about it beyond broad basics, so it’s frustrating to research.

It’s tough to know how long my mom has been ill because she had some cognitive difficulties for a long time. I’d guess at least the past five years. The disease progresses at different rates. Once my mom wasn’t able to walk without falling down, it prompted us to call hospice. I’m still not sure hospice is actually the right thing for her, but because of COVID-19 we’re accepting all help available.

What was a memorable learning?

Don’t be afraid to change providers. We changed primary care and home health care services many times. My mom’s primary care physician had little to no experience with geriatric issues, so we found a specialist who diagnosed her properly and got her medications to treat her symptoms. Our family friends gave us a recommendation for a geriatrician.

Ask home health care services what their employee gift giving policy is. My mom has dementia, and she gave thousands of dollars worth of antiques to her home health worker. The company had no gift policy at all. When asked, the employee said she thought she was doing mom a favor by accepting the items and helping her downsize.

What surprised you about caregiving?

It’s surprising how terrified some of my friends are of illness and death. Some people cannot bear to think about end-of-life issues. They have withdrawn during a time I could use a friendly ear and some support.

How do you try to balance being a caregiver while caring for yourself?

I struggle with this one very much. I’ve tried to let go of my nightly glass, or two, of wine because I cannot be tipsy and care for my mom. It just isn’t safe. I’m still working on other self-care items. It’s the first thing to go.

What resource would you recommend to caregivers?

I recommend Reddit to caregivers. There is a forum there for everything.

What advice would you give to caregivers?

Get physically strong. It takes a lot of muscle to lift and care for aging relatives. Start weight training now.

Also, forgive your family members for any perceived past slights or personal shortcomings. Focus as much attention as possible on love, healing, and kindness. Try to empathize with other family members and prepare them for grief. Especially if this is a new experience for them.