This is an article in a series about long-term caregiving.
Long-term caregiving requires ongoing alert awareness of the many needs of the patient. One caregiver described it as hyper-vigilance, like always thinking what needs to be done, and when, and how, and where, and at what time, and with whom. When I was the caregiver of my wife who had metastasized cancer, my mind was always preoccupied with her and her illness. Everything else was pushed aside.
There is so much to keep in mind. The daily routine which changes as the illness progresses. Being alert to the mental and emotional experience of our sick loved one. Being careful what we say to him or her. There is the demand of keeping track of the medications, and also learning that there will be side effects we need to watch for. There are medical appointments and the transportation involved. There may be sitters that we have to schedule. There are the bills we receive. Forms to fill out during which we must remember dates, and phone numbers, and names of medications. All these demands, and more to come, can create mental stress that causes us to wonder what is happening to our mind. Are we losing it?
The longer the caregiving is needed, the more mental demands we experience, and the more stressed we become. No way to avoid it. No way to make it go away. It is what it is. However, there are self-protective things we can do.
- First, and ALWAYS first, we need to know that we are stressed; to know that we cannot remember every detail; and that we will make mistakes.
- Ask for help. Forget about thinking you do not need it. Forget about being able to cope alone. Don’t be too proud or too private to ask for help.
- WRITE it down. Save your memory. Make lists and USE them. During my caregiving experience, I put lists on the refrigerator door; PostIt notes on the bathroom mirror, and lists in my smart phone. Still I felt the mental stress, but less so when I organized all the details in writing.
- Lastly, TALK about the mental stress often. A support group is the place to do this. You are alone. Others care. Let them help you.
About the Author
Hugh Burns is a Licensed Marriage and Family Therapist and an ordained clergyman in the PCUSA. Hugh graduated from Presbyterian College and Columbia Theological Seminary. He leads DPC’s Caregivers Support Group and has previously served as a Clinical Chaplain in a mental health center and a hospital. You can reach Hugh by email, at firstname.lastname@example.org.