A Caregiver's Story: "You expect to retire and go do remarkable things – and we have.”

“I always expected to be the one to go first,” shared Maggie, one week into her 91^st year. “I had so many sicknesses, cancer and small strokes, over the last few years that I thought I would just pass in my sleep one night and Dean would carry on. He was always the one to tend me.”

They met in 1996 at a square dance. A friend of hers had convinced her to go out one night to have some fun after her divorce. She met Dean, four years younger, also divorced; the rest is history. She was still working as a nurse and told him she would not marry him until she retired. He quit asking her to marry him and started asking when she was going to retire! A year later, in June 1997, she stopped working after a 50-year career (30 as a Critical Care Unit nurse and 20 in Labor and Delivery) and they were married – at a square dance.

In December 2018, Dean fell while showering and badly injured his head. He had a brain bleed, possible seizures, and numerous other afflictions leading to a lengthy hospitalization. He had little appetite unless Maggie was there to coax him to eat. Gradually his strength returned enough that by early fall of 2019, he was able to take a driving test for senior citizens, designed to highlight thinking errors and slowed reflexes; he passed.

Then he began to fail again. His heart was beating erratically, he wasn’t able to breathe well, and he generally spent his days in his recliner, with Maggie caring for him full time.

When asked how she copes with being a full time caregiver at such an advanced age, Maggie said there have been good days when he was able to use his computer to work on his family genealogy, and bad days when he didn’t have energy to do even self-care. The hardest thing to do is to turn off that part of her brain that is always on alert. She is looking for or listening to sights and sounds that might indicate that Dean had fallen.

She monitored his food intake; if his appetite was low, she would feed him on a tray in his recliner and “bribe” him with a smoothie, berries, or applesauce. She does all of the laundry. Though she has a valid driver’s license and access to their vehicle, she does not feel comfortable driving anymore. Her daughter or friends take her to the store for groceries.

After a monitor showed that his heart was stopping for as long as eight seconds, a pacemaker was implanted. Three days post- surgery he was unable to stand from his recliner. An ambulance took him to the emergency room, and he was later admitted to the Veteran’s Administration hospital. He had a subsequent stint at a rehabilitation facility, and then pneumonia took him to the Intensive Care Unit in cardiac arrest. He was revived, intubated and sedated. He woke up three days later and assured Maggie that she had done the right thing by agreeing to intubation. (She has a Do Not Resuscitate for herself and they had had conversations about his wishes).

He had several setbacks while working hard with the therapists to obtain the coveted discharge-to-home date, as well as several trips back and forth between the VA hospital and the VA rehab care center.

Maggie’s caregiving has not had a break however. Now, instead of doing all of her care in the comfort of their home and being together 24-7, she has the added stress of finding transportation to and from the hospital, making sure that the staff is on the same page with his recovery goals and medications, and being the lead cheerleader for Dean when he is feeling depressed about not being at home.

He recently initiated conversations about wanting peace of mind, having his burial arrangements set up “pre-need.” That’s no easy task since the family plot is in Iowa, 950 miles from his home in Virginia. Wife/caregiver Maggie met with a local funeral home and started the process of coordinating two funeral homes and insurance companies to make sure that his wishes are fulfilled.

When asked how she copes with the stress of being a caregiver at her age, she had very clear advice to offer:

· She takes care of her own health, including proper sleep, nutrition, exercise (mental and physical), and relaxation. Her guilty pleasure? Chocolate. Just chocolate.

· She has a positive attitude. No problem is too big to tackle if it’s broken down into manageable steps.

· She listens to her intuition. Everyone has a “still small voice” lurking in them. Listen to it, she suggests.

· She communicates regularly with Dean’s two sons who live on the West coast so that they are updated on his health status.

· She has a strong faith and active church community to support and lift her. “Be still and know that I am God,” Isaiah 42:10.

Maggie has no room for self-pity or “why me?” She re-evaluates her goals and Dean’s progress and says things like, “we’re going to be fine.”

When asked for a final thought, it was this: “You expect to retire and go do remarkable things – and we have.”