After my husband’s aorta dissected in 2013 I built a wheelchair-accessible townhome for us. Living there hinged upon my health. If my health started to fail we would have to move, a worrisome thought. My husband and I hoped to stay in our townhome for years.

Then I started to have some odd symptoms and made an appointment with my doctor. Since she had a previous appointment, I was seen by a nurse practitioner, someone I knew and trusted. She ordered tests and they showed a dark smudge in my tummy. A surgical appointment was made for me in case I needed a hysterectomy.

Who would care for my husband while I was in the hospital?  

Life answered this question. Days before my surgery, my husband developed pneumonia and pleurisy. He was in such pain I called 911 and he was transported to the hospital by ambulance. Four days later he was dismissed to my care. He did well the first day, but the second day my husband was so weak he couldn’t transfer to his shower chair and slid to the floor. I called 911and firemen came and lifted him up.

Clearly, my husband needed follow-up therapy. I called his physician and she contacted a social worker, who arranged for admittance to a rehab center. As it turned out, I had stage one uterine cancer and had a hysterectomy. I was hospitalized for two days, dismissed, and told not to lift anything that weighed more than 10 pounds for six weeks. These are my tips for family caregivers who have chronic illness or are facing surgery.

Start with the primary care physician. The primary care physician is key to health care and management. If your loved one doesn’t have a primary care physician, it’s time to get one.

Compile a list of contact names. Keep an ongoing list of names and contact information for the people who care for your loved one. Ask for business cards and keep them in a central place.

Visit assisted living communities. My husband and I toured the best assisted living communities in our town. We put a deposit down on one facility and added our name to a list at another.

Ask family to help. Long before my surgery, my daughter offered to come and stay with us. Contact your religious community if you don’t have family support. Social services is another source of information.

Continue to monitor care. One staff member yanked my husband’s leg and when my husband said, “Oh that hurt,” told him not to complain. I reported this to management and recommended additional training for staff.

Track and manage medications. To maintain normalcy, my husband came home very day for several hours, but he was so sleepy he could barely stay awake. I contacted his primary care physician and asked which meds caused sleepiness. One medication was eliminated and the dosage of another was reduced.  

Be an advocate. Ask for more information if the documents are confusing. Laws change and your will, and your loved one’s will, may need to be updated. Keep documents in a safe place. Be a keen observer and note any misinformation or mistreatment you see.

Family caregivers are the backbone of American health care. We must care for ourselves to care for others.