1. As soon as I would think we had hit a long stretch of everything falling into place, with no crises, something would happen requiring rethinking my mother’s health needs. Whether it was an infection that required hospitalization and then rehab, and follow-up home care, or getting a blood transfusion, every event caused a re-evaluation of what care she needed and how well she might or might not recover. No decision was ever final. Adding care or taking away care became at times a real balancing act. For example, she was in hospice care for just over a year, and suddenly began to thrive to the point she no longer qualified. (She returned to hospice care later.)
2. In dealing with the health care system, there are three rules:
The polite squeaky wheel will get attention and there is no reason not to complain or ask about care issues if you have a concern or question. Don’t suffer in silence. When my mother was to be discharged from the hospital and we were waiting for the doctor, I would go hunt them down so they would know that we were waiting (and that I needed to get back to work).
What you want may not be possible. Often the key to making things better for a patient is finding what is possible and working from there.
The health care system was not set up to take into account working family members who are also caregivers. Sometimes you have to be blunt that no, you cannot come back on a different day, or you need to get to work by noon.
3. If your loved one is in a facility, it matters whether their workforce is stable. There are widespread shortages of staff now, and often the aides are working more than one job to make ends meet. The more stable the facility’s staff is, the better they know and understand the patient. For example, reading the newspaper every morning was important to my mother, and I made sure one was delivered for her. The aides all knew she was a happier person if she could sit with a cup of coffee and read her paper over breakfast and into the morning. When I was no longer sure she was comprehending the newspaper, one of the aides assured me that she was because my mother would talk about the articles she found interesting. When I visited in the evenings, my mother was tired, and less talkative, so I would not have known that if the aide hadn’t filled me in.
4. The amount of mail from charities asking for money is staggering. My mother used to regularly give to one specific charity for children. Over the years, however, there were more and more asking for money and each with heartbreaking stories. I discovered my mother had been writing small checks to some on a regular basis which just bred more requests. Once I took over her finances, she would ask about “her charities’ and when I said we would write a check or two at the end of the year she was not happy. Even when she moved from her independent apartment, the requests kept coming.
5. Exhaustion and guilt plus poor health will take over if you let them. Caregivers need to realize they are in a marathon and need to take care of themselves. That includes both physical and mental health. I wasn’t eating well for a long period of time and became exhausted to the point I could not think. When I finally dragged myself to a doctor, I had a blood sugar level of 500 and was diabetic. I had felt horrible for six months, but I delayed getting my own care because of all I had to do for my mother. I did not put myself first when I should have.
When you’re caring for a patient who is declining, it can feel like a long, slow, sad slide. Yet there can be times of great humor and great poignancy that make caregiving rewarding. These moments will help sustain you after your loved one is gone.