5 Pieces of Advice for Caregivers From a Former Caregiver
- Nancy Hardaway shares five lessons from 11 years of caring for her husband, including staying present and acknowledging the demands of caregiving.
- Accepting practical help and making time for rest, friendships and personal interests offer support through the daily responsibilities of caregiving.
- Respite takes different forms, including a few hours of help at home or time away with dependable care arranged for a loved one.
- Road Scholar Caregiver Grants help eligible unpaid family caregivers age 50 and older take part in educational travel.
When Nancy Hardaway’s husband was diagnosed with multiple system atrophy — a rare, progressive disease with no cure — she became his full-time family caregiver.
Over 11 years, Nancy learned lessons about staying present, recognizing her own exhaustion and accepting help from others. Her reflections offer fellow caregivers a personal perspective on caring for a loved one while making room for their own needs.
Here are Nancy’s reflections, in her own words.
1. Stay in the Present
Because my husband’s disease was progressive, we were always facing a future that was more difficult than the present. Still, we had a choice: We could dwell in the past and resent the universe for all of the things we could no longer do. We could look toward the future with a feeling of dread. Or we could live in the present and make the most of it.
It wasn’t always easy. In fact, it wasn’t ever easy. But I woke up each day and told myself that the only day that mattered was today. I had to actively choose to pay attention to the present. All I had to do was find ways to make that day a good day — not just for him, but for both of us.
2. Acknowledge Caregiving as a Burden
Someone visiting my husband and me once said to him, “You should know that you are not a burden.” As a caregiver, you never want to say that your family member is a burden. The word brings with it negative connotations. But the word “burden” is defined as “something that is carried; a load” or “a duty or responsibility.” In nearly every case, that’s exactly what caregiving is. Caregiving for a spouse or elderly parent may start gradually but can become a full-time job. To say that caregiving “isn’t a burden” can minimize the value of all that the caregiver is doing — the heavy weight he or she is carrying.
One tip for caregivers is to acknowledge, at least to yourself, how extraordinarily hard a journey that caregiving can be, often with no end in sight. This can help remind you how strong you are and help you understand why you’re exhausted. Recognizing your burden offers permission for you to look for support — to strengthen yourself and lighten the load. Road Scholar’s grants for caregivers are one way to do that. By offering Caregiver Grants, Road Scholar acknowledges and honors both the burden and the value of caregiving.
3. Learn to Identify (and Avoid) Caregiver Burnout
Because caregiving is a burden, both emotionally and physically, I often found myself getting depleted. I was constantly in “fight” mode — fighting the symptoms, fighting our helplessness against the disease or fighting the healthcare system for appropriate care. My energy and resilience would burn out, along with my optimism and hope. I worked at building myself up as much as I could — keeping up with doctor’s appointments, finding ways to get exercise that wouldn’t take too long or take me too far from him, or staying in touch with my interests through online classes. I finally knew I needed a break.
I found out about the Road Scholar Caregiver Grants through a friend, but by then my husband couldn’t be alone for long. When I was able to arrange for a weekend away, it made such a difference. If you can get away, go. Go even if you think you don’t need to, so you can prevent caregiver burnout and care for yourself, too. Take advantage of Road Scholar’s grants for caregivers if you can. Accept opportunities for respite — they can help you return to your duties refreshed, so you can be the best full-time caregiver you can be.
4. Be Vulnerable and Accept Help
My husband and I were always open about his illness. That willingness to be vulnerable seemed to invite offers for support. At first it was hard to accept help, for both of us. I figured if I could do it, I should do it. But, as things progressed, I began to recognize oncoming depletion. I realized that I couldn’t handle all of life’s daily responsibilities plus caregiving, too.
As I shared my challenges with friends, they helped me realize how much support I was refusing. So, I started saying yes to everything: food, rides, social visits and repairs. One of the best tips for caregivers I can give is: Don’t be afraid to open up about the difficulties of caregiving and accept any help that is offered. What you’ll come to realize is that you’re giving friends and family members a gift by allowing them to help carry the burden.
5. Keep Your “Life-Space” as Big as Possible
As time went on, I could feel my life closing in. I came across the term “life-space” in the book "Elderhood" by Louise Aronson, and it resonated so much with me. Our lives were shrinking, fitting into a smaller and smaller space. We saw fewer people, traveled shorter distances, went fewer places. As our life-space decreased, our focus decreased, until all we could see was the disease.
I went out of my way to increase our life-space any way I could. Since we had loved to travel, I found shorter trips closer to home. We loved to entertain, so rather than hosting dinners, we invited friends over for cocktails. When he couldn’t leave the house for more than a few hours, I looked for easy places we could go in his wheelchair, like a fishing pier where he could be on the water.
Now that I’m alone, I’ve been exploring new ways to expand my life-space. I applied for a Caregiver Grant and am excited and grateful that it allowed me to expand my life-space all the way to Santa Fe.
Finding Support as a Family Caregiver
For readers currently caring for a loved one, support often starts closer to home. A shared calendar offers friends and family a way to coordinate regular help. Respite also includes in-home services, adult day care and short-term residential care. Even a few hours of support each week offers time for your own needs.
Tell your health care provider about your caregiving responsibilities, too. Discussing the demands on your time and health helps start a conversation about support groups and other resources.
If educational travel is something you’re considering, Road Scholar’s Caregiver Grants provide tuition assistance of up to $2,000 toward eligible learning adventures in the United States or Canada costing $2,500 or less. Applicants must meet eligibility requirements, including being age 50 or older, living in the United States and facing financial barriers to participation. Eligible former caregivers are also welcome to apply within two years of their loved one’s death.