Just Go With The Flow

This interview/article is a continuation of the Caregiving Project of our Roots 'n Wings Support Group for people who live with physical disabilities.

I recently interviewed one of the people we serve at Bridge about her experience with caregiving through the years. Her name is Ardis Lawrence, and she has been actively involved with Bridge for well over two decades. Ardis has had cerebral palsy since birth, so caregivers have always been in the picture for her. Now in her 60's, she looks back on her life and contemplates how interwoven caregiving has been with the fabric of her daily existence.

Ardis had family caregivers as a child, and lived at home with her parents through high school. She grew up accustomed to needing help, and having caregivers to help her. But as her parents aged, the roles gradually changed somewhat. She found herself doing more of the reminding as her parents ability to remember declined. She also took on some of the chores she could handle when needed, like doing the family laundry the time her mom had foot surgery. As her parents' needs increased over time, the family added a paid cleaning helper into the mix, and her sister helped more often as well. In her house, people in the caregiver role were always coming and going.

As Ardis shared the flow of her life history, and how the various caregivers she'd known threaded through it all, I finally got an answer to a mystery. As long as I've known her, which is about five years now, Ardis' email address has referenced a 'farm girl'. I always wondered what that was all about. Why farm girl? Well, during our interview I discovered that her family lived on a dairy farm near Lynden, Washington when Ardis was a girl. I had not realized she'd grown up in a rural area, and her practical outlook suddenly made a lot of sense. Every farmer I've ever known has been nothing if not practical.

Eventually, Ardis’ parents decided to sell their farm and move to Bothell. They bought a house there, and Ardis lived with them. Then, as aging inevitably crept in, the time came when her parents needed to move into a long-term care facility. At that point Ardis began an effort to find housing that would work for her, not realizing what a long and difficult process that can be for someone living with a disability who has never lived on their own. There were some false starts, and she learned the hard way that advance planning for the time parents can no longer provide care and housing is necessary to avoid a crisis.

To begin with, Ardis lived in a series of group homes over about 6 months time, and then tried living in her own apartment in Lynnwood where a paid caregiver came in 4-5 days a week to help her. But after living alone for nearly 3 years, she developed problems with depression and anxiety. So when she was invited by an old friend to move to an adult family home near Mill Creek in 1998, she tried that for awhile. And on it went...

Finally, in 2010 Ardis moved into brand new adult family home, where she was the only resident for awhile. She lives there still, and now shares the home with five other residents. A couple owns this home and live in their own place right next door. In addition, a full-time caregiver lives in 24 hours a day, 5 days a week. The owners have two children of their own living with them as well, so it's a busy place.

While living in her current home, Ardis has been learning to communicate directly with her paid caregivers because her sister and brother-in-law began to have more serious health needs of their own and didn't have as much time and energy to give. Since the caregivers don’t know her as well as her sister does, she has to adjust to the caregivers' way of doing things. Due to her disability, communication can take a long time - Ardis has to repeat herself a lot, and persevere in order to be understood. She is learning to be assertive without being annoying to her caregivers, but it’s a balancing act.

A friend from church she has known for 24 years has done more and more for Ardis over the years, so her sister ended up hiring her to be a part-time caregiver. These days Ardis relies on her to help with shopping, running errands and giving her rides to church, meetings and appointments a few times a week. In fact, this caregiver brings Ardis to Bridge's monthly Roots 'n Wings Support Group meetings.

When asked her preference between family and paid caregivers, Ardis said she likes not having to be so dependent on family members and she’s getting used to having paid caregivers. As she gets older she finds she likes being more independent in that way. 

When asked if there was a difference in quality of caregiving between family and paid caregivers, she said that she liked being home all the time with family when she was young, but as she grows older it’s more important to her to have the independence. She also prefers caregivers who have had mental health training because they can communicate with her in a way that helps her open up and be more candid with people about her feelings.

When asked to describe her worst experience with a caregiver, she described a relationship she had with a caregiver who seemed to be paranoid and often thought Ardis was ‘setting her up’ to get in trouble with the group home that employed her. She also mentioned another caregiver who didn’t believe her when she said she was sick, and got angry at her. Her friend and sister advocated for and protected her, and she lived in her sister’s house for a month before moving to her present home.

I asked her how that felt – not being trusted, not being believed – and she said it had a bad effect on her mental health for awhile, but it forced her to learn to cope.

Because of who she is, because of where she needs to live, caregivers have learned that Ardis is an unusual person – she teaches people how to take care of her. Sixty-five years of living with cerebral palsy and getting used to dealing with caregivers has made her a philosopher. She accepts that things will not always be her way, and tries to see other people’s point of view. Most of all, she has learned to gain more control over her emotions.

When asked about her best experience with caregiving, Ardis shared fond memories of the staff in her first adult family home that were willing to take her on long trips to Whidbey Island. Ardis has also learned much about the world through her relationships with caregivers. She knows people from distant locales and varied ethnic backgrounds. She reminisced about caregivers from Ethiopia, who taught her a lot about their home in Africa and their customs.

To wrap up the interview, I asked Ardis what she would like people to know about caregivers in general. She said, if she could find a caregiver that could meet 90% of her needs, that would be a good thing! But she also knows she couldn’t be a caregiver herself, because she would try too hard. She would be too much of a perfectionist with details. She doesn’t feel the best caregivers get hung up on the details. In her opinion, they need a more relaxed attitude than she has. They need to be able to just go with the flow.

As we finished the interview, I found myself reflecting that we could all probably stand to...sometimes...just go with the flow. Many of us spend much of our lives trying to impose our will on people and things around us - often without success - and possibly that energy could be better spent in another way. If going with the flow makes one a better caregiver, where else might it be beneficial in our lives? As always, the Farm Girl Philosopher with her practical, homespun wisdom left me with something to chew on.

Only God gives inward peace,

    and I depend on Him.

Psalm 62:5

Note of Interest:  Ardis is one of the original members of Roots 'n Wings, and 
had the honor of paying tribute to our founder, Rev. Henk Wapstra, 
at our 2014 Breakfast of Champions.