Depression and Caretakers: How to Take Care of Yourself Too
My biological father, Stephen, died last fall, three and a half years after being diagnosed with ALS (also known as Lou Gehrig's Disease). It's a horrible way to die. You lose control, usually slowly, of your entire body, although your mind stays the same. Stephen wasn't in pain until the very end, fortunately.
I visited Stephen and my stepmother, Nancy, at their houseboat in Sausalito a few months after Stephen was diagnosed. At that point, Stephen had lost some mobility, but still could move around with help and could talk. Nancy walked down the dock with me to my car. I asked her how Stephen was handling the diagnosis. She said, "Well, at first he was depressed, obviously. But they gave him an antidepressant, and he's doing better." I can't remember if I asked her at that point how she was doing.
Stephen was able to stay on the houseboat until his death. With the exception of a home health care worker who came in once a day during the week for an hour, Nancy and my half-brother, Noah were responsible for all of his care. Every time I visited, I was struck by how daunting a task that must be. At 6' Stephen was not a small man, and it took a long time for him to lose a substantial part of his muscle mass. While that was a plus in many ways, a 6' man of average weight is pretty heavy. My husband offered to give them a break whenever they wished (there was no way I, with my Multiple Sclerosis, could even think of it), but I think they felt Stephen was their responsibility.
Every few months their health insurance paid for Stephen to stay one week in a nursing home. This was for Nancy's benefit more than Stephen's, to give her a breather from the physically and mentally demanding job of caring for him, and allow her to address her own, if only for a few weeks out of the year.
Except for when they went to work, Nancy and Noah were almost as trapped as Stephen. Without help, they could not get his wheelchair up the ramp from the houseboat to the dock, so going anywhere meant leaving him alone. When we moved from Connecticut to California and found a house to rent, they brought us a homecoming gift of some yummy food from Trader Joe's, but couldn't stay longer than the time it took to see the house.
As Stephen's illness progressed I visited him as much as possible, for a few hours at time. Since Nancy works full-time, it was usually just the two of us on the little houseboat, except for the home care worker who was there for an hour around noon. He talked often about how hard his illness was on Nancy and Noah, and how much his relationship with Nancy had suffered.
I say "talked," but at this point he was completely unable to speak. He communicated by using a laser pointer that was taped to his glasses, and moving his head slightly to spell out words using a chart on the wall. It was exhausting to carry on a conversation like this, and I often thought about how tiring it must be for all three of them.
Almost three years after Stephen's diagnosis, I saw this article entitled "Caring for ALS Patient Brings Emotional Strain." The article discussed a rather unexpected finding. Over time, caregivers of ALS patients have higher rates of depression than the patients do. In this study, the ALS patient and their main caregiver were interviewed by a psychologist separately at the beginning and at the end of a nine-month period. It was found that while the mental state and quality of life of the patient remained essentially the same, the caregiver's had worsened.
I emailed a link to the article to Nancy at her work email address. She replied, "Thanks - that really hits the nail on the head!" I think it probably helped for her to know that she wasn't alone.
The next time I saw Stephen, he mentioned the article, which surprised me. I hadn't realized that Nancy would share it with him. She may have felt that it was a good way to open a dialog with him. Although Stephen had spoken previously to me about how hard the situation was on Nancy, I think that he realized for the first time that she was probably clinically depressed.
Not surprisingly, depression is common among caregivers, especially caregivers of terminally ill patients. After all, depression is often triggered by loss and a change in circumstances. In this case, Nancy had lost her husband and her life as she knew it. Their financial circumstances had changed, their social life dwindled and her world revolved around taking care of a dying man.
Caregiving is all about sacrifice, putting aside your own needs to take care of someone else. Many caregivers are reluctant to talk about their own needs, especially when their loved one is terminally ill. They may feel that their concerns are insignificant compared to the patient's.
But even if the task is taken on willingly, the physical and emotional burdens will wear over time on even the most emotionally healthy person. Caregivers should definitely take the time to talk to a doctor about depression if there's a chance that they are suffering from it, and health professionals should bring the possibility out in the open when a patient is first diagnosed with an illness that will require caregiving.