Embrace Your Caregiving Journey

Embrace Your Caregiving Journey

Months before Alice's mother passed, her husband was diagnosed with mild cognitive impairment (MCI). As a caregiver for the second time, Alice has learned to trust her instinct, to keep living her own life, and to embrace the journey. This is Alice's story.

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 Alice. I’m a Baby Boomer woman who lived in Georgia, but moved to Louisiana four months ago. I am currently caring for my husband who has Alzheimer’s.

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

I am actually on my second stint of caregiving. Early in 2005, my then 86-year-old mother moved in to live with us as a semi-invalid. At the time I was the office manager/bookkeeper for my husband’s property management company, was writing a second novel, and was freelancing. My youngest daughter was in college.

Months before my mother’s death at age 96, my husband was diagnosed with mild cognitive impairment (MCI)/early Alzheimer’s. My working life was still a mix of creative and business, but my kids were all on their own.

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

I am currently caring for my husband. Our relationship/marriage was stormy for the first forty years. Now I am increasingly less spouse and more family caregiver.

What was a memorable learning?

The first time I lost my patience with Ralph, I yelled at him. Instead of yelling back, he looked at me like a hurt child. I realized all the dynamics of our relationship had changed. Resentment and blame were irrelevant.

What surprised you about caregiving?

I am actually good at it. I never thought I was a natural caregiver. I was the kind of girl growing up who avoided baby dolls, was not interested in babysitting, and never had a pet to take care of and didn’t want one. But then I had kids and found I enjoyed the nurturing. Particularly when they were small and relatively helpless. I was not terribly sure of myself, but putting someone else’s needs first came easily.

Adult caregiving fell in my lap, or jumped on my back. My mother rejected living in assisted living and chose to live with me rather than my siblings. Although, they were emotionally closer to her. In fact, I think she wanted to live with me because she knew I would be more objective and level-headed. I had never been as dependent on her as my sibling had been.

I think my strength in caring for her, and now my husband, is that I can behave in a nurturing way regardless of how I happen to be feeling. I can make decisions objectively. In other words, I’m probably good at compartmentalizing.

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

Until recently (a mix of COVID-19 and his slide down the Alzheimer’s continuum now stopping me), I traveled with friends for a few days at a time. I was also more involved in community and social activities than I had been before.

What resource would you recommend to caregivers?

Try a support group early on. Even if it doesn’t stick (I haven’t continued), it will give you a sense of community. Being able to talk to someone in your situation is really useful.

What advice would you give to caregivers?

Trust your instinct. The most recent instance of this was in February. I noticed my husband was behaving oddly, had little appetite, and seemed out of it. As a person with cognitive impairment, he often acts in ways that might seem odd or out of it.

I wasn’t sure if I was over-reacting. Was there something new that was wrong? Was he just having a cognitive downturn? What exactly was he doing that odd since there was nothing glaringly wrong?

I called his doctor and took him to an urgent care. He turned out to have a life-threatening infection. For over a week he languished because the lab was having trouble finding the source, but I suggested to the doctor that it might be an infection he picked up from his dogs. The results came back the next day, and it was rare bacteria passed in dog saliva.

One other piece of advice, it’s okay to have an occasional bout of self-pity.

Is there anything else you’d like to share?

You are on a kind of journey. Some of it will be terrible, but there will also be moments of genuine joy. Most importantly, keep living your own life. Make friends, find creative outlets, and goof off.

Where can you find Alice?

I started a blog, Alice in Memoryland, shortly after Ralph’s diagnosis when I wasn’t sure what the future would hold. Many of my readers are also caring for loved one’s following a slow course of Alzheimer’s. In a way, our situations are less dramatic but no less traumatic in the long run.

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