Until age eight, I lived in an extended family house with my parents, brother and me on the top floor, my grandparents on the middle floor, and my aunt, uncle and cousin on the bottom floor. We all took care of each other, no questions asked. It was a close, loving family.
But that was then, this is now. Times have changed. People move away, and families don’t always stick together. I was lucky that my daughter and her newly-wed husband live near me and helped care for my husband (her father) who had Alzheimer’s disease. Every Sunday afternoon they took him out to a movie or to lunch. It gave me a break and it uplifted his spirit. My son, who was in graduate school, came home when he could to take his dad to a football game. And friends took my husband out to lunch on a regular basis.
But I needed extra help so I hired two graduate psychology students. I had promised myself that I wouldn’t become a martyr to my husband’s illness. I took care of myself by pursuing my interests and meeting with friends. Because I had time for myself, I had more energy to be present for my husband. Still, caring for someone with Alzheimer’s disease was a daunting task, as is caring for anyone with a chronic disease.
It really does take a village to provide care for someone with a chronic illness. If you have family that offers to help, you are lucky. Sadly, it’s often the case that one family member bears the brunt of the caregiving, which can lead to conflict and bad feelings.
What can you do to encourage family and friends to help?
- If your loved one has Alzheimer’s or another form of dementia you are well aware of the difficult task of caregiving. But if your sister or brother, son or daughter, etc. only sees the ill person once in a while they might not realize the full impact of the disease. Try to plan a respite day or weekend by having another family member care for your loved one. This is the best way to help your family realize how much care your loved one needs and what the task requires.
- Plan a conference call and divvy up the caregiving. If your family is spread out, encourage a rotation of caregiving. In some cases, the ill person stays with a daughter or son for a few months and then moves on to stay with another family member. This eliminates guilt and bad feelings among siblings. The logistics are complicated, but it can work.
- If it is impossible for others to share in the physical caregiving because of where they live or other circumstances, encourage family members to take on a specific responsibility such as: refilling medications, driving to and/or making doctor appointments, providing meals, researching community assistance programs that include respite care and volunteer programs, setting up automatic bill payments and/or dealing with financial issues, providing a housecleaner or cleaning the house once a month, mowing the lawn, shoveling the snow, etc.
- Speak your truth. Do you need a night out with friends? Time to go for a walk or to the gym? Say so, and don’t be afraid of offending anyone. The worst that can happen is that your sister or brother, or son or daughter will say “no.”
- Is it possible for you to get paid for the help you provide? Discuss the options with your financial planner and other family members.
- Ask a family member to create an online caring community such as “Share The Care” https://sharethecare.org/getting-started/ or “Caring Bridge.” “Share The Care” is a system that creates a support network among caregivers that lets everyone share responsibilities. “Caring Bridge” https://www.caringbridge.org/how-it-workshelps you create a site that enables you to share updates about your loved one, coordinate help, and get emotional support.
- It’s a fact of life that you can’t force another family member to help. Even if you do get help, you might be the one who does the disproportionate amount of caregiving. Try to accept it and be grateful that you will not feel guilty for not being there for your loved one. You are appreciated and even if your loved one can no longer communicate, he or she appreciates you and loves you. Just know that you are doing the best that you can . . . and that is all you can do..
Barbra Cohn cared for her husband Morris for 10 years. He passed away from younger-onset Alzheimer’s disease in 2010. Afterward, she was compelled to write “Calmer Waters: The Caregiver’s Journey Through Alzheimer’s & Dementia”—Winner of the 2018 Book Excellence Award in Self-Help—in order to help other caregivers feel healthier and happier, have more energy, sleep better, feel more confident, deal with feelings of guilt and grief, and to ultimately experience inner peace. “Calmer Waters” is available at Amazon, Barnes & Noble, Boulder Book Store, Tattered Cover Book Store, Indie Bound.org, and many other fine independent bookstores, as well as public libraries.