Shared story: My community of care made all the difference for us

Today’s shared story comes from Freda Hill,
a resident of Loveland, Ohio,
who lived as a dementia caregiver twice.

It breaks my heart to learn that another of my friends has been diagnosed with Alzheimer’s, for I well know the progression of the disease. Twice I was a caregiver for a patient with dementia. The first was with my husband, Harry, and a few years later with my sister, Anna. Both situations occurred in my middle to late 80s and early 90s.

Help at home

Being a caregiver spouse is not an easy position to fill. Decisions that were once shared over the years must now be made alone—sometimes in unfamiliar areas. In my case, I knew how to run my household and even manage our finances, but I had no familiarity with such things as general household maintenance, car care, lawn mowing, or how to manage our farm property. However a couple may have divided up their roles in the past, the caregiving spouse is now saddled with it all—a big adjustment that only multiplies the stress.

I was raised to be pretty self-sufficient. I was born in a log cabin on the “crick” in the hills of Kentucky, and life was hard. As a result, I was never quick to ask for help from others. When Alzheimer’s came knocking, I had to get over that quickly. There comes a time when you must ask for help. You cannot do this alone.

There comes a time when you must ask for help.

I started with family—my children and grandchildren. I couldn’t have done it without them. My daughter organized a monthly schedule, and my children and grandchildren were there every day to assist me with some very difficult tasks. This went on for several years. As Harry’s disease progressed, I added home helpers and eventually hospice care.

With these helpers, it was possible to care for him in our own home—the best place for him. It was familiar territory, initially less confusing, always with familiar faces. It was his home place with good food and loving care. However, to pull this off, we made lots of adjustments and many were hard. I was and continue to be blessed by a loving family that lives close by. I understand that others may not have that option. My advice remains—ask for help. You need to build a “community of care” to get through this.

Nursing care

A few years after Harry died, my sister developed dementia. She had never married and, apart from Harry, was my lifelong best friend. She had helped me with Harry and now she needed similar care herself.

For some time I cared for her in my own home as well. By then I was in my early 90s. While my own mind was still sharp, my hearing had severely deteriorated, and my physical strength couldn’t keep up. Finally, we decided that my home was not a safe place for her, so my daughter took a lead role in her care and subsequent move to a nursing home. Home care and nursing care, I have used both options.

My advice

My experience prompts me to offer some advice. First, in a marriage, each spouse needs to know what assets they own, how much money they have, and how to access their important papers. If your affected family member is the only one who knows, on one of their better days find out all you can and write it down. Too many of my friends have lost their husbands and seem to know very little about such details. Don’t wait for that.

Nearly all parents place a high priority on teaching their children how to live, but how do we teach them how to die? My children and grandchildren have had a front-row seat to hands-on care. Between the unpleasant tasks, we shared conversations and family stories. I hated the circumstances, but I loved our time together. I believe they all learned lessons they’ll never forget.

Truly blessed

When Harry died, some thought I would be relieved. I never felt that way. Even though we had lost all meaningful interaction, I felt lonely when he was gone. I still feel that way today.

If the Lord allows, I’ll be 99 years old this October. Though my hearing is nearly gone and my strength is not what it used to be, I’m still able to live in my own home due to the support of my kids. I’m truly blessed.

As for me, did I choose to be a caregiver? Of course not! If I had it to do over again would I make the same choice? Oh yes! In a heartbeat! (Isaiah 6:8).