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    Caregiving – The Missing Link?

    agingAs we age, we are likely to need major surgery at some point. Mine was a knee replacement. However, like many others who are aging today, I have been generally healthy all my life. This has led me, like many others, to underestimate the need for effective caregiving in the recovery process.

    Caregiving is a crucial part of recovery, but one my partner and I recognized only after surgery, when it was too late to arrange properly. I had never needed full-scale caregiving, and my partner had never been a caregiver before. After surgery, I was not in condition to arrange it properly, thanks to my relative immobility and mental fog from pain medication.

    I had hoped we would be given instructions in advance on what would be needed, as we went through the examinations and preparations for surgery. At each of the meetings with my surgeon, my primary doctor, and the hospital before surgery, I expected to hear clear instructions on what would be needed, and be given a brochure, or at least a write-up, of what the caregiver would need to do, how often, and how to guide and help me—the patient—with my daily needs for bathing, toileting, eating, supervising my medication, and helping me with the rehab activities and exercises that began immediately after surgery. I also wondered whom I would call about questions that might come up once I was home.

    But that didn’t happen. At each meeting, I thought, “This is when we’ll hear about caregiving.” But each meeting had some other purpose, and so my husband and I assumed the next meeting would be when we would learn what we would need to do. And each time the topic failed to be covered, and we weren’t aware enough of its importance to ask about it ourselves. An occupational therapist did discuss how to make our house safe for me, and my husband and I were able to remove rugs, add grab bars, and figure out how I could move from bed to bathroom safely. I also received a walker and other post-surgical equipment that would be needed for my rehab.

    I was on strong pain medication during my hospital stay, including when the case manager came to see me a few hours before my discharge. We briefly discussed which home health agency would come to see me for a few minutes every few days to take my vital signs and change my surgical dressing. Again, the hospital case manager failed to discuss the ongoing care I would need.

    Once at home, I discovered that I was basically unable to do anything but lie in bed, sleep, and move slowly with my walker to the bathroom and back. I knew that I would not be able to go up or downstairs more than about once a day, and could not prepare my meals, and certainly not stand at the stove and cook. If I dropped anything, I couldn’t pick it up. If I needed water or food, I had to ask for it. I couldn’t make the bed, or even change pillowcases.

    My husband was not prepared for my dependence and was surprised by how much care I needed. I needed his help to have something to eat or drink, or straighten the bed to make me more comfortable, or move my exercise machine on and off the bed several times a day. I needed him to check up on me every couple of hours to see to my comfort and well-being. Luckily, we have a home intercom, so I could communicate with him. But I was uncomfortable with how often I needed his assistance and did my best not to disturb him too often.

    Two weeks after I came home from the hospital, my husband went out of town for almost a week on a trip that had been planned long before my surgery. No one had explained how long my recovery would take, so we had both assumed I would be relatively self-sustaining by then, but that wasn’t the case at all. I arranged for two friends, taking turns, to come check on me once a day. In retrospect, that wasn’t nearly often enough, but none of us realized it was unsafe or inappropriate for me to be alone 23 hours a day.

    About that time, I had several questions about what medications I should be taking, and what level of activity I should be reaching, so I called my primary doctor, and he took over my care. Now I know that the primary doctor should have been the “go-to” guy once I got out of the hospital.

    My advice to anyone preparing for surgery is to ask early and often about what kind of care you will need at home. Develop an in-home care program with your spouse and your friends. Both you, the patient, and the caregiver(s) need to be educated about what to expect and what kind of help or resources your caregivers might need to help them care for you.

    Don’t stop asking until you get detailed information about what to expect and what to do. In particular, ask your primary doctor to recommend or locate someone—nurse, case manager, social worker—who will give you the information you will need. Then make a plan.

    Jeff Lewy is a long-term San Franciscan, whose primary interests are encouraging and expanding LGBT philanthropy, and forging links between LGBT organizations and the larger community. He has been a board member and volunteer for half a dozen community nonprofits, and works to promote effective social programs in the society at large. He remembers what it was like to be gay in the 1950s and does not want to go back.