A special relationship

She’s not a guest. You’re not a boss. Your folks are not patients. Giving, receiving and managing personal care in the home requires a delicate balance—a special relationship. Once the decision to accept care has been made—which is itself an achievement—how can you successfully integrate a care provider into your home? Let’s see how a few families have managed their caregiving scenarios.

Subsidized community care

Community care refers to care that is fully subsidized by your provincial government. This care is paid for and provided by the Ministry of Health. It is often arranged by hospital discharge planners on a short-term basis when someone is returning home after surgery. Depending on the province, older adults or those with chronic conditions may qualify for care to assist with bathing, light housekeeping, physiotherapy and so on. It is a no- or low-cost option, and often a family’s first experience of care in the home.

Subsidized healthcare services are popular, but arrangements take time to set up and require assessments. Schedulers may have to assign different workers on different days. Workers sometimes rely on public transit or have long distances to travel by car to get to the home, even for a short visit. Finally, a worker from a different culture may be a challenge to someone of an older generation.

Alberto’s experience

Alberto Guccione, aged 78, was divorced, living alone and experiencing reduced mobility in his ambulation, legs and arms as a result of Parkinson’s disease. The lack of flexibility in his arms affected his ability to shower and dress independently. His son called from overseas and spoke to Alberto’s doctor. While Alberto was reluctant to admit needing help, he agreed to a community care assessment in order to receive just two showers a week. The assessment also revealed issues with meal preparation and transportation, so his son arranged for homemaking, meal preparation and driving services from a community agency. So far, so good.

Although he had initially agreed to the showering arrangement, Alberto resisted everything else! He went out when the homemaker was expected; elected not to go with the homemaker to buy groceries, then was critical of what she bought; and while the homemaker cooked and stored meals as requested, he did not eat either them or the Meals on Wheels that had been arranged. When the worker arrived for his shower he exploded, saying she was two hours late and he’d already showered on his own. He disliked the homemaker’s cleaning efforts and complained she did not follow the instructions he had written out for her.

Over time, Alberto’s lack of cooperation meant that services were discontinued. His son was furious with social services and with him. “It took so long to set all this up—what happened?” Alberto shrugged: “It’s free so I can do what I want.”

It’s regrettable that Alberto’s first care experience entailed personal care, which can be difficult at the best of times. Having to accept help in these most personal realms of his life was a blow to his self-esteem and independence.

What could have helped Alberto? Perhaps establishing realistic expectations for him, his son and the various service providers would have allowed things to start off on the right foot.

Part-day agency care

Mrs. Siegel, aged 90, was a legend in her community after her long career as a retailer. Her sense of humour, business acumen and social graces were completely intact, but her mobility was another matter. She used a wheelchair and needed help with bathing transfers, dressing and shopping. Once in her chair, however, she managed her daily routine, including making simple meals moving about her home. Her daughter Brenda worried endlessly about her, and convinced her to wear a personal alarm and accept assistance beyond what the doctor had already arranged. After asking around, Brenda chose an agency and asked them to send a personal support worker (PSW) from 8am to 4pm, every day.

There was every reason to expect this arrangement would work well. The agency employees were bonded, insured, reference-, health- and police-checked, and covered by worker’s compensation insurance. The agency provided policies and procedures to follow, telephone support and supervision from head office. In the event of an absence, workers were backed up; and if a worker was a poor fit with a client, he or she would be replaced. The hourly rate of $25 was a considerable sum, but seemed a reasonable price to pay for Mrs. Siegel to remain in her home.

A success? The agency staff spent a lot of time on the phone—usually with Brenda. She called her mother constantly to ask what the PSW was doing; then she hung up and called the PSW’s cell to make suggestions and direct operations. Since Mrs. Siegel’s care needs were minimal and a cleaning lady was in place, there was really only two to three hours of attendance required per day. Being so tightly supervised was overwhelming for Mrs. Siegel; the excess hours offended her sense of economy and the endless attention made her feel like a child. She slammed the door on any further care, leaving Brenda frantic.

What was really at issue was a lack of respect for the agency and its workers, coupled with an inadequate job of determining needs. No one had asked Mrs. Siegel what she wanted, analyzed her needs or maintained control of the client relationship.

Private independent care

Eventually Brenda opted for a privately hired, independent caregiver who worked part-days with Mrs. Siegel and had another job at a nursing home. Brenda felt this was a much better plan. The rate was about half that of the agency, and there was no formal commitment to the worker and no need to pay her benefits. The only downside was her inability to work overtime because of her other job. Was this arrangement really ideal?

  • The private care worker must be thoroughly vetted since there is no agency to check references or experience.
  • Someone must manage the worker, for her own protection and the client’s. It’s even a good idea to create a job description outlining all responsibilities and tasks, so that all parties understand what is expected.
  • The family should seriously consider obtaining workers compensation coverage.
  • A care worker in a casual arrangement with no guarantees or benefits may not have the same commitment to the client.
  • The family should set up a client protection system such as Lifeline or MedicAlert bracelets.

Although this arrangement can work well, families must be aware that “cheap” care provision can be a false economy. A parent’s well-being is priceless.

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1 Comment

  1. Your comments in this article are so apropo. Both examples illustrate real feelings that the patient feels, to a greater or lesser degree.

    I have personally gone through the transition from independence to reliance. Initially the CCAC had the degree of service just right. But it was me that was less cooperative. Housekeeping and laundry was just fine, but I was NOT going to let a woman shower me! I needed help getting in and out of the shower, so I allowed that only while I was covered up. The PSW and CCAC worker did not press any issues at all.

    Eventually I ended up where I am now, an assisted living apartment. The PSWs here have never been pushy but rather have “lovingly” encouraged me so that now we work together to my ideal care. Their respect and gentle attitude have allowed me to relax and let them into my life to do showering and other personal hygiene with absolutely no embarrassment on my part, and I am most grateful for it. I actually look forward to their visits.

    My point is that some denial, some embarrassment, some resentment is inevitable. But with love and patience, gentleness and understanding, the bridge can be crossed together. As with any grieving, it just takes time to make the adjustment.

    Once the adjustment is complete, I for one, am most grateful for the help and for the enabling of my energies to be spent on even more rewarding things. Such a boost to one’s quality of life !

    My thanks goes out to ALL PSWs !!!