The Dilemma To Move Loved One To Nursing Home Or Not?

Follow your heart, you will know'

January 16, 2009

Tess Kalinowski

Staff Reporter


It is with a heavy heart that Claudette Burgess awaits the call about a nursing home bed for her beloved husband of 46 years.

After more than five years of watching Henry's once agile mind decline, Claudette has reached the heartbreaking conclusion that she can no longer give him the care he needs in their Windsor home.

Since he was diagnosed with Alzheimer's disease in 2003, it has laid waste to the couple's life. Once an active college professor and photographer, Henry can no longer speak. In recent months, he hasn't been able to walk and he has difficulty eating.

"His brain is not telling him what to do. He starts chewing and he gets foggy," says Claudette.

"I have to do everything for him. It's 24/7. It's so difficult to have to put a person in a home," she says. "I still have pangs or qualms but it cannot be helped."

Claudette's decision last fall to put Henry on the waiting list for full-time care is one more step on her long, lonely road.

Although each caregiver's journey through Alzheimer's is unique, experts say Claudette is like many relatives and spouses, who struggle with their own health even as their loved one declines.

She has undergone treatment for breast cancer, has difficulty with her right arm due to lymph node removal and suffers from back pain. She can no longer lift Henry, and the home-care help and friends she relies on for respite simply aren't enough anymore.

"I had to face reality," says Claudette, who believes she should have begun looking for nursing home space sooner. "Thank God for the Alzheimer Society. They have walked miles with me. The one thing I've heard is that if you don't take care of yourself, you won't be able to take care of him.

"When he got into the state of not being able to stand or walk, I realized as much as I do not want (to put him in a home), I'm not going to get that help that is gravely needed. In order to be able to live long enough to help him, I wouldn't be able to continue doing what I am doing."

As dramatic as it sounds, caregivers do sometimes die before their loved one, says Kathleen Connolly, a social worker who councils patients and families with the Baycrest Geriatric Health Care System in Toronto. "It's not unusual for a caregiver to have their own health impacted."

In many cases, the spouses are older and have their own health problems. And women may be caring for husbands who are physically larger and stronger. If the patient becomes agitated or violent, the possibility of the caregiver being hurt is very real.

Connolly says there are four tipping points toward full-time care: immobility, falls, incontinence and impaired memory and confusion.

The decision to place a relative in a nursing home can be among the most difficult in a person's life, says Dr. Ken LeClair, clinical director of the geriatric psychiatry program at Providence Care, Mental Health Services in Kingston.

"People sometimes see it as the door of no return, (but) it's probably the door to another set of hands," he says, noting the caregiver's role changes but doesn't end.

Claudette Burgess offers this advice: "Follow your heart. When it comes to that point that you can no longer give the care you would like to give your loved ones, you will make that choice."