A Caregiver’s Musings: A schedule I never wanted to keep

“You’re doing well,” my friends say. My husband has spent the last month in the hospital, and his future is bleak. I’m anything but “well.” My previous passions are now colorless. I haven’t been to art classes. I’m not reading. I have no interest in my veterinarian TV shows. Yet, still, I’m moving forward with life pursuits even though my love of 50 years is not with me.

What helps us to maintain outward calm in the face of serious illness of a loved one?

1. Follow your social inclination. Don’t be pressured into obligatory gatherings. I’m ordinarily social, but the best medicine for me now is to close the blinds and dine alone. Some may welcome loads of well-wishing, but at the end of a day at the hospital, it is quiet isolation that regains my equilibrium.

2. Maintain habits which formerly provided satisfaction. I continue to meet friends at 5:30 a.m. for a run, hike or stroll. Even though I’m filled with sadness, the normalcy of time spent with long-time pals reminds me that I have support and that everyone has problems.

3. One task every day. Mountains of tasks remain undone, but accomplishing even one job, gives satisfaction.

4. An animal can give solace. I sleep with my 12-year-old chihuahua, Blanche. Her six-pound presence is not my 200-pound husband, but with the dog near, I am not alone. The routine of feeding walking and greeting my tiny canine is therapeutic.

5. Cook for yourself. Thrown-together dinners are designed just for me and my tastes. Simple cooking is superior to hospital cafeteria meals or fast food grabbed on the
way home.

6. Keep your own doctor appointments. Resist the impulse to cancel doctor visits and make sure to remember your own health.

7. Get sleep. Hours in my husband’s hospital room exhaust me. Caregiving knocks me out. Once in bed, I review my boring routine and plan the next day’s obligations, but never allow thoughts of my husband’s illness or our future to crowd my mind.

8. Keep a scribbled or tidy daily diary. How quickly I forget the date of my husband’s last hospitalization, how vacant my mind is for the name of his newest medication, how instantly I erase the name of the med which caused him to fall. Doctors can review a computer readout, but when they run into an examining room/hospital bedside, they ask me. To make sure I recall, it is best to refer to written notes.

9. Find your own form of rebellion to prevent yourself from being swallowed up in the institutional depersonalization. For me, it’s refusing to pay the hospital parking structure fee every time I visit. Instead, I search for street parking and walk the few blocks to the hospital. The walk back to the car after leaving the hospital allows me time to decompress.

10. Limit yourself. When the most significant person in one’s life is hospitalized, limit yourself to essential activities that fit into your new schedule. It is a schedule you never wanted to keep, but within its confines, retrieve any tiny part of yourself which contributes satisfaction.

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