ON MY FIRST home visit, Mr. M lay propped on pillows in a hospital bed in the middle of the family's living room. A glass of water and a half-finished jigsaw puzzle sat on his bedside table. He'd been bedridden for 2 years. A ruptured cerebral aneurysm and complications from type 2 diabetes left him with urinary incontinence, left-sided hemiplegia, and a right foot amputation. His dark wavy hair, small physique, and bright brown eyes made him look younger than his 59 years.
From the beginning, I was impressed by Mrs. M's commitment to her husband's care and her indestructible optimism. She turned him frequently to prevent pressure ulcers and used a patient lift to transfer him into his wheelchair every day. Always upbeat, often laughing or telling funny stories, she kept Mr. M entertained. She was energetic and fit.
Alone with her in the kitchen one day, I asked, "Do your children give you a hand?" She smiled. "No need for that. They have busy lives, jobs, young children."
She explained that caring for her husband was a lot of hard work, but she enjoyed it. She declined my offers for BP checks, home health aide services, and a referral to a social worker or caregiver support group. "I see my doctor every January for a physical," she said. "Everything's fine. I haven't the time or interest in a support group. I went to one a long time ago. All people did there was complain."
The nursing visits fell into an easy routine. Mrs. M appeared happy and content, and Mr. M's condition remained stable.
From caregiver to patient
One afternoon I received a call from Mr. M's son, who told me his mother was admitted to the hospital with a myocardial infarction. Mr. M was being transferred to a nursing home until Mrs. M recovered.
A few weeks later, both Mr. and Mrs. M were back home. When I arrived on that first return visit, Mrs. M was sitting in a recliner and Mr. M was in his hospital bed. A home health aide was in the bathroom organizing the supplies to bathe him after I left.
"You don't know how wonderful it is to be home," Mr. M said. "I never appreciated all my wife did for me until I lost it." Mrs. M replied, "I hate that this happened. I enjoy taking care of you."
After I took her vital signs, Mrs. M smiled. Her skin was pale and she'd lost some weight, but her prognosis was excellent. Cardiac rehab would start next week. "My heart attack was definitely a wake-up call," she said. "You were right, what you said about getting help. The doctor said stress was part of the problem. Funny, I never felt stressed. I wanted to do it all by myself."
I explained that a home health aide and a physical therapist would visit three times a week, and a social worker would visit a few times to talk about a long-term care plan. Mrs. M agreed to have a van pick her up and take her to cardiac rehab. "But I'm still not going to a support group," she said. "I hate that idea."
Mr. M told me that their son was coming by a couple times a week to help, bringing food for them. Their daughter was helping by taking them to doctor appointments.
"Your whole life's been turned upside down," I said. "It's like starting from square one again. But people are here to help; they care about you both. It'll just take time."
Hidden stress takes a toll
Sometimes caregiver burden isn't recognized until it's too late. Attention to a caregiver's physical and mental health is as important as caring for the patient. With the M family, the caregiver stress was hidden.
My work with the M family taught me that, especially if there's only one caregiver, I need to look beyond the facade of Everything's all right. I'm managing fine. Just because caregivers say they're doing well doesn't mean they're taking care of their own needs. Caregiver support and referral options should be regularly explored in depth-the positives, the negatives, and the rationale behind them.