“I can't do this for one more day,” I wailed to myself after my husband of 40 years, including several years deep in dementia, baffled me with yet another irrational antic. These moments were becoming more frequent and often were compounded when several incidents occurred in one day.
In his confusion and bewilderment, it might have been the day he disassembled his electric shaver – this was the third ruined razor in six weeks. Or the time he lost his wallet, conducted a frantic search and discovered it two days later under his desk chair. Or maybe it was the time he discovered the car keys hidden in a basket of tea lights in a laundry room cupboard and drove the car to the middle of the front lawn, while I was walking the dog.
Alzheimer’s disease and related dementias typically rob the patient of rational behavior. It’s not the patient’s fault and there’s little a caregiver can do to prevent these unsettling occurrences. But day after day, I had begun to lose patience. Was it time to place him in a memory care unit? How to know for certain?
This difficult decision needs to be made with family members and medical personnel. My frustration, which was taking a toll on my mental and physical health, had to be weighed between his health issues, safety concerns and cost considerations.
Health care professionals or social workers involved in a family’s decision on memory care placement typically monitor a patient’s abilities to complete six basic activities of daily living, including bathing, dressing, eating, using the bathroom, getting in and out of chair or bed, and walking – particularly as it relates to emergency procedures. Just because my husband insisted he’d already taken a shower that day, when actually it had been two or three days since his last bath, he qualified on only one count. However, he could still complete the other five activities.
Fortunately, some stopgap services may help caregivers and their loved ones relieve the burden of care. Homemaker chore aides can help on an hourly basis with laundry, meal preparation and supervising bath time. But even with this support, who would be on hand when my husband decided it was his turn to make dinner and burned up a stew pot while, I was working in the garden?
Respite care services offer excellent relief, sometimes staying with the patient for several hours or a few days, so that the caregiver can get away for some much-needed rest. A compassionate and qualified person took my place for two nights while I visited my college roommate. I returned refreshed, though not thrilled to be back in my muddled home life.
Home health nurses can provide more advanced assistance when medications are involved or when the patient is having difficulty walking, and getting in and out of chairs and bed. My now incontinent husband couldn’t get himself diapered and ready for bed, but the home health nurse made it possible for me to leave the house one night a week for choir practice.
Still, I argued with myself about my increasing frustration and inched closer to placing my husband in a memory care unit, until I assessed his current quality of life, combined with his health and well-being. At home, I could make sure he was well fed, monitor his bizarre behaviors, keep him on a regular schedule, take him with me to the grocery store, invite friends for a meal or try to talk with him. Yet, guilt crept in – what if he declined more precipitously in a memory care unit ,when I could have been caring for him at home?
I cared for my husband at home for five years from his first signs of cognitive decline until he couldn’t – or wouldn’t – get out of bed. He spent the last five days of his 75-year-life in a memory care unit.
Mary Nowotny is a freelance writer in the Southwest who has learned a lot about the soft sides of old age, sickness and dying.
