My Best, Hard-Earned Advice for Caregivers
The importance of self-care, support groups, and helping others, and the role of guilt and grief in the caregiving process.
Sad to say, 12 years of caring for my husband, Jack, a professor of psychology and a gifted artist who suffered from a rare form of dementia, and nine of widowhood have made me what some would consider an “expert” on the subject of caregiving and grief. If I had to choose the topics I consider most important for caregivers to know about they would be the following: self-care, support groups, the healing effect of helping others, and the role of guilt and grief in the caregiving process.
Towards the end of my husband’s life when he was in a facility, I learned that two women whose husbands were in the same residence had suddenly died. Fit and much younger than their ailing spouses, both of them had heart attacks. As shocked and saddened as I was, I was not surprised. Caregivers usually have to do triage, and inevitably the person who most urgently needs attention is the one being cared for.
I thought I might be having a stoke but didn't go to the ER because of my worries about leaving my husband.
On one memorable occasion, I experienced numbness on one side of my body in the middle of the night and feared I might be having a stoke. I neglected to go to the ER because of worries about leaving (or taking) my husband. Ridiculous in retrospect, perhaps, but I’ve heard many stories like it.
Because of chronic stress, which elevates the levels of adrenaline and cortisone in the bloodstream, caregivers are at risk not only for heart attacks but for many other medical problems as well. Some stress-relieving exercises I practiced were reframing, in which I forced myself to see something positive in the most dismal situations, and imaging, in which I allowed myself several minutes to think about some problem and then pictured an elaborate box in which I locked up those thoughts.
They didn’t stay there for long but usually long enough to give me a little respite. I wasn't as good as I might have been about doing exercise, which is a known stress reliever, eating healthy foods, or taking time out for myself now and then, but I know how important they are and am good at urging other caregivers to do them.
Support Groups are a Lifeline
One of the most important ways of relieving stress is joining a support group. What I realized early on was that even the people who loved us most – both family and friends, who did everything they could to help – couldn't get what it was like to be a caregiver. What I needed far more than sympathy was empathy. I needed it more than psychotherapy or antidepressants, which had, in the first instance, provided no help at all and, in the second, had brought relief over a particularly rough patch but was not what I wanted or needed on an ongoing basis.
What I craved was to be among others who got what I was going through. At my first support group meeting, I was brought to tears when I found myself in a room with five other women with whom I immediately felt connected. After years of carrying the burden alone, I was now part of a sisterhood which made that burden feel a little lighter. All of us were caring for husbands suffering from the same illness. We shared practical advice, gave each other support and courage, and, most remarkable of all, shared some good laughs that could never could have been shared with anyone else.
Helping Others is Healing
In a support group one quickly learns that by helping others you help yourself. Several years later, the message became amplified when I began sharing my writing with others. When my husband was ill, I began keeping a journal, which later morphed into a memoir, and finally into a novel. Writing was therapeutic for me, and I strongly recommend that all caregivers try it. If I had no control about anything else in my life, it made me feel as if I were in charge of something, even if it was just deciding what to include or omit or which words to use. It was also a way of venting without imposing my feelings on others.
Later, after I was widowed, it allowed me to reclaim the good memories from a long and happy marriage that had been buried in the rubble of Jack’s illness. Finally, when I began to publish my writing and heard from people who found it helpful and healing, I felt empowered because I had managed to wrest something positive from the most awful experience of my life. Helping them was part of my own healing.
Guilt and Grief
There has probably never been a caregiver who hasn’t felt guilty. If you can’t fix the situation, you must be doing something wrong. If you make a bad judgement call; are not as patient, cheerful, or understanding as you should be; if you feel annoyed or resentful; if you want a life, you are a bad caregiver. The list goes on and on. Guilt can be corrosive, so writing and talking about it in your support group and recognizing how universal it is can be critical to your well-being.
Most caregivers suffer anticipatory grief, fearing and dreading what will come next.
The same is true of grief. Although people often assume that grief follows the death of a loved one, it often precedes it. Most caregivers suffer anticipatory grief, fearing and dreading what will come next. Long-term caregivers of loved ones with dementia, like those whose loved ones are in a coma or missing in action, also experience ambiguous loss, the loss of a loved one who is both present and not present, who is no longer the same person you once knew. This produces grief, often as strong as post-death mourning, but there are no rituals for it – no funeral, shiva, or Kaddish – and it often goes unnoticed.
Sharing these feelings with others who are also experiencing them is a way not only of validating them but also of finding solace and comfort, which is rarely available through other channels.
Often the lowest priority for the caregiver is taking care of her own needs, but it is critical to remember that when a caregiver takes steps to maximize her own physical and emotional well-being, she is not being selfish. On the contrary. By caring for herself she is not only promoting her own well-being but also maximizing the chances that she will be able to continue caring for her loved one.