A Caregiver’s Job: Assist, Support, and Love
By Joanne F. Kennedy
According to the National Alliance for Caregiving and AARP, 29% of the U.S. adult population (65.7 million) are caregivers to someone with an illness, disability or who is aged. Women make up 66% of the caregiving population with the average age of female caregivers being 48. Millions of people are afflicted by conditions such as fibromyalgia, chronic fatigue and immune dysfunction syndrome, lupus, multiple sclerosis, Parkinson’s, and Alzheimer’s, leaving them reliant upon the care and assistance of a family member. The difficulties of living with chronic illness are numerous, and the demands of caring for a chronically ill family member can be challenging.
“I can’t feel the bottom of my feet,” Jack said. He had been standing on a ladder, painting our back porch. When he climbed down and came into the house with a disturbed expression on his face I could tell that he was concerned.
I didn’t think at that time that something could be wrong. I reminded him that, as usual, he was working in a pair of leather moccasins with soft soles that didn’t provide enough support. He was 38 years old, chairman of the science department at a nearby high school. Life was normal and he had a routine: yard work, washing the car, tutoring our children. He was an attentive father and husband.Then I remembered that for a while, about three years prior to this, he pretended to be devoted to watching football on TV every weekend, but actually, he was on the couch sleeping. And then there was a period of time when I had to hire someone to do a major yard cleanup because he was unable to keep up with the maintenance. I had forgotten these times because they didn’t seem related to one other.
It was another three years when it became clear that he could no longer work because the numbness in his feet had moved up his legs. He was diagnosed with a non-typical multiple sclerosis. At that time, I was determined that this would not change our family. I thought I could handle it all on my own—his illness, the kids, the house, my job. I wanted so much to be able to do it all. But I couldn’t.
It is not possible for a caregiver to become ‘Super Person.’
A caregiver should give the loving care they can, but also call upon others for assistance, then seek out the resources that are available, so they can better coordinate the best care and support for their loved one.
I reached out to the American Red Cross, who offered a class on caring for someone at home with MS. They gave me useful information on how to restructure our house to accommodate the wheelchair Jack would eventually need. They also directed me to the MS Society for additional help in making our home safe for my husband. They installed grab bars in strategic areas to prevent falls and as his movement became more limited, they loaned us Hoyer lifts to facilitate lifting and moving. And all of this happened over 35 years ago, before advocacy for the needs of disabled persons became a mainstream topic. Yet I still felt as though I working in the dark and felt guilty for the things I couldn’t handle on my own. So I kept searching for help.
I found a support group dedicated to those caring for partners with MS. We shared problems and sought solutions together. I invited Jack’s parents to come stay with us for several days at a time, which provided him with company during the day while I worked. I also found out that the Braille Institute would send books on tape to sighted persons who couldn’t hold reading materials. These were all valuable resources that helped my husband, but also helped me feel supported as well.
With time, I learned that he and I needed to continue living parallel, but separately at times. His close friend came over on Sundays for lunch and football, which freed me to go see a movie or do something for myself. He shared an interest in coin collecting with another friend, who took him to monthly meetings for as long as he was able to go. He was given telephoning tasks for our church, which kept him in touch with the members. Our son would spend his lunch breaks every day with him. One day our daughter surprised him with a great big puppy, who grew into a great big dog and his faithful companion.
As the illness progressed we struggled to adjust to each new situation. An electric wheelchair gave him more independence. I bought an old VW van and had it equipped with a lift so we could join friends out for dinner or take a drive.
For 12 years we made the caregiving work for all of us, partly because of my determination, but mostly because of his appreciation for everything his friends and family did for him.
When I was no longer able to care for him at home he was the one who lifted the burden from me by saying, “I know I need 24-hour care now.” And even when he wasn’t with us each day, the caregiving continued because caregiving is really all about love.
Ten Tips for Caregivers
Provided by the National Family Caregivers Association
- Choose to take charge of your life, and don’t let your loved one’s illness or disability always take center stage.
- Remember to be good to yourself. Love, honor and value yourself. You’re doing a very hard job and you deserve some quality time, just for you.
- Watch out for signs of depression, and don’t delay in getting professional help when you need it.
- When people offer to help, accept the offer and suggest specific things that they can do.
- Educate yourself about your loved one’s condition. Information is empowering.
- There’s a difference between caring and doing. Be open to technologies and ideas that promote your loved one’s independence.
- Trust your instincts. Most of the time they’ll lead you in the right direction.
- Grieve for your losses, and then allow yourself to dream new dreams.
- Stand up for your rights as a caregiver and a citizen.
- Seek support from other caregivers. There is great strength in knowing you are not alone.
About the Author:
Joanne F. Kennedy (6/2/1925 – 5/28/2009) is the late mother of the CPC’s CEO, Lynne Kennedy Matallana. Joanne was a caregiver nearly all of her life. She was a stay-at-home mom until at the age of 45, she had to return to the workforce because her husband could no longer work and his pension was not enough to sustain them financially. Not only did she care for him, but during her life she cared for their two sets of ailing parents, her sister and niece for a short time during their illnesses, her son when he was diagnosed with Crohn’s disease, and was a close support to Lynne during her difficulties with fibromyalgia and other overlapping conditions.