What's It Like to Be Recipient of Home Care - Patients Respond

Care Receiver vs. Caregiver

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In the caregiving business we talk a lot about the giving of care: how family caregivers need help and to get breaks, training for both family and professional caregivers, the reasons that people may require assistance in the form of in home care and so much more. What we often don’t talk about—or hear much about—is what it’s like to receive care. Knowing what it's like to be a recipient of care can help readers set expectations for care and even demand the highest standards of care.

We reached out to people (not clients of Homewatch CareGivers) who receive professional in home care to find out what it’s really like, positive and negative, to need help and get that help. Overall, what we heard is something that we have long known: getting help allows people to maintain independence, in spite of illness or disability.

From Independent Woman to Relying on Others

Janice Wheeler, 61, worked as a contract specialist for the FAA for 28 years before retiring on disability due to neuropathy that resulted from her diabetes.

“I worked since I was a teenager,” said the mother of two. “I was always a very independent woman.”

After a hospital stay and being confined to a wheelchair, Ms. Wheeler was advised by her doctor to hire professional in home caregivers.

“It was a weird feeling, very depressing actually and I went through a low period,” she admitted. “I didn’t know anything about it before this.” However, she recognized that getting help in her home was the path to regaining some independence in her life.

Three years ago she needed daily care because she could not walk at all and had to live in a nursing home, but she has since moved to an apartment and only needs caregivers for a few hours each week.

“It’s getting lighter and lighter,” she said, referring to the amount of time she needs assistance with activities of daily living regularly.

“They come in to help me with a bath, maybe do some very light housekeeping.” In addition, her daughter, who is married with two children and works full-time in a town 20 minutes away, also comes on most weekends to run errands like grocery shopping. A nurse also comes in twice a week.

Over the years, Ms. Wheeler said she’s made friends with some of her caregivers and seen others only a couple of times. “There are some good ones out there,” she said. “One decided to go back to school to be a nurse and she still calls and checks on me because we remained friends.”

Today, Ms. Wheeler has a different perspective on caregiving. “I probably would not have progressed as far as I have without them,” she said.

Accepting the Need for Care

One woman in her 80s who lives in Los Angeles, California was happy to talk about her experiences with receiving in-home care, but did not want her name used publicly. “Jane” is a writer and actress who ended up in the hospital a couple of years ago. When it came time to be discharged, her health care provider recommended a professional caregiver.

“I was hoping it would be a couple of weeks, and it’s turned out to be much longer,” she said. “I’m not as strong as I used to be.

I need my walker or I might fall. I usually have a full schedule so my caregiver drives me places and helps me get dressed and that is helpful.”

Jane said that she may have Parkinson’s, but the diagnosis has not been confirmed. “I’m still hoping to be completely free and not need a caregiver,” she said.

Although Jane does not have long-term care insurance, she advises “young people” to get it for themselves. “I wish I had known about it so I could be using it now,” she said.

Care is Independence

Mike Volkman was born with a genetic neuromuscular condition and doctors expected him to die during childhood.

Now in his 50s, he has long become accustomed to a need for assistance.

“I use a power chair, speech recognition software to operate my computer, and 13 months ago I started using a feeding tube and a vent,” he explained. In addition, he requires 24/7 care. “I have a personal staff of six people who are my arms and legs.”

Mr. Volkman is grateful for professional in-home care. “When you rely on family and friends for free help, no matter how good they are to you, it puts a strain on them because the work becomes an obligation,” he said. “You compromise your needs trying not to be a burden, and they can make you feel guilty for asking. They also don’t live forever. That is not independence. It is much better to have people you can rely on under your direction.”

In other words, he sees professional care services as another kind of freedom. “It puts me in complete control of my life and my lifestyle,” he added.

Each of these stories illustrates the different types of people that need home care and the variety of services it can encompass based on need. The common thread between them is the supported independence they experience as a result of engaging professional caregivers to help them.

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