One of the most difficult decisions a family has to make is determining when it is time to place their loved one in a long-term care facility. The decision is emotionally charged and financially draining.
Our first choice is to keep our loved ones at home and, in fact, 70% of people with dementia are cared for at home. In the early stages of the disease, this is the most appropriate care. As the disease progresses, the primary caregiver must remain vigilant to changes that could make homecare unsafe.
Many times family members will ask me how I knew it was time to place Jim in long-term care. My final decision was complicated, but at crunch time, two important aspects became the deciding factors.
First, Jim only slept about four hours a night, and I was physically exhausted. During his waking hours, it became imperative to be watchful. Providing twenty-four hour a day care for an adult is different than watching over children. As Jim’s reasoning process deteriorated, each day brought new challenges as I coped with escalating situations about driving, wandering off, relentless pacing, anger issues, and depression. He became the telemarketers’ best friend as he agreed to purchases for products we didn’t need or want.
The second deciding factor involved his safety. Even though I hired caregivers, installed an alarm on the front door, and felt like I sometimes had the proverbial eyes in the back of my head, he still managed to wander off from time to time. I took him to a facility for day care only to have them call to tell me they couldn’t keep track of him. He had picked up his guitar and headed off down the road toward the highway.
Eventually, I realized that if Jim wandered off in extreme weather and I didn’t find him in time, we wouldn’t have to make a nursing home decision. I didn’t want my husband to be lost and alone without the ability to find his way to safety.
It was a heartbreaking moment when I admitted defeat. I always knew that Jim couldn’t help being the way he was, but dementia had become the victor. It was time to do what was best for both of us—his safety and my sanity.
My sons and my mother-in-law knew the time had come to find a safe environment for Jim. Other than those three, I didn’t seek or want anyone else’s input. The more people involved in the decision making process, the more complicated it becomes. Too often it is the family members who haven’t helped in the day-in-day-out caregiving that least understand why long-term care has become necessary.
My friend, Ted, kept his wife at home until the stress sent him to the hospital for open-heart surgery. The doctor told Ted to either find a home for his wife or start making his funeral arrangements. That may seem a little extreme, but often the caregiver is the one who dies and then someone else has to make the long-term care decision.
The only people who truly understand how hard it is to be a primary caregiver are those who have been one. Visiting a person with dementia for a few hours or even a few days does not create true understanding. Sometimes our love for the person with dementia throws us into denial.
A diagnosis of Alzheimer’s is hard to accept and if you haven’t seen the day-to-day changes, it is easier to believe the physician has made a mistake. One visitor told me, “I don’t think there’s anything wrong with his memory. He talked about his childhood friends and remembered every detail about Oregon.” Short-term memory goes first, and yes, at that time Jim could remember things that happened thirty years ago, but sometimes couldn’t remember our sons’ names.
The only way to know if it is time to place your loved one in long-term care is to look at the day-in-day-out situation and base the decision on what is best for the person with dementia and the primary caregiver.
Stay fully engaged with your loved one once he or she is placed in a home. Rather than second-guessing the long-term care decision, use smiles, hugs, and thoughtful gifts or treats to make your visits a joyful occasion for both of you.
Copyright © May 2011 by L. S. Fisher
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