A Caregivers Q&A on Living for the Love & Inspiration of her Daughter

It is now possible for family or guardians to care for loved ones at home who formerly were forced to be placed in an institution. In reading the accounts of mothers of children who survived severe traumatic acquired brain injury, I have witnessed the fierce determination and the love of the mothers who have chosen to care for their children in their home. I have interviewed Cheryl O’Brien who has cared for her daughter Terri for 25 years. Although she lives in Australia, I think that caregivers in other countries can also relate to her frustration with the “red tape” of the system! I have only recently met O’Brien and appreciate her willingness to share her perspectives.

Q. On July 14th, you wrote, "You will make a bigger difference than a whole team of therapists and doctors..." Can you elaborate on this?

A. The nurturing that a child receives from their family will determine how well the child responds to medical interventions and therapeutic programs.

The attitudes and care of family members are consistent and permanent, therapists and doctors come and go. Medical people work from a basis of 'make same', this is a focus that makes difference 'wrong'. It affects the self-esteem and self-confidence of a person with disabilities and puts their own focus on how different they are to others rather than a more positive focus on being how alike they are and that differences when they occur are neither good nor bad, just different.

Family works from the basis of 'accept the individual' this focuses on the sameness of people in a positive way and reflects the idea that individual differences are just a part of life for everyone, ie Mum is different to Dad, and that is okay, grandma is different to aunty and that is okay too... There is less generalizations in family-based care.

The complete polar views affect the outcomes of all programs, therapies and medical interventions. While the need for medical interventions and therapeutic programs is present it is not the doctors, nurses or therapists that carry out the programs or follow up on the interventions, rather it is the family that does this.

Q. You write that Terri has never been a burden to you, but that the red tape is the burden. Society often makes people feel like a burden and a great fear of many is that they will become a burden. Do you have any additional thoughts on this subject?

A. Terri has never felt like a burden, her needs are simply that, her needs, they do not feel burdensome.

When Terri has a need that I cannot meet and I need help to meet that need and the process of getting the help is laden with appointment times, meetings, paperwork, policies and lots of waiting for people to do their job then I feel burdened. Organizations and services providing the needs for people with disabilities are very focused on preventing a litigious situation and their policies are always focused on them not being sued.

I am not interested in suing anyone; all I am interested in is getting Terri what she needs.

Q. On August 16th, you wrote "Yes, she has a brain injury. No, that does not mean that it does not matter what you do with her. It matters more." That was very poignant. Do you have any additional thoughts on this subject?

A. There is an attitude among many people that so long as they are 'doing something' with Terri that is enough. It is not. Having a brain injury means that everything you do needs to be done in a considered manner, taking into consideration the abilities, the possibilities. Terri does not need people to keep her out of the way of family, or community, she needs help to be enabled to take part in family and community. She is not a burden or inconvenience she is a valued member of our family.

The fact Terri cannot communicate easily that she would like to do a particular event or activity and that she cannot report back to family what she experienced are always major considerations. It is quite possible for a carer to say they are taking Terri out for a particular activity and then drive to a car park or even back to their home or somewhere similar, play on their phone or iPad  do their own household chores, then bring Terri home without having done anything, this has happened in the past the carers attitude was simply that "well I got her out of the house so you didn't need to worry about her." In fact it has created extra worries, what really does happen when someone takes Terri out plays on my mind a great deal. I can tell by Terri's responses when she comes home that all did not go to plan but it is hard for her to communicate any level of detail.

For a young adult to learn a new skill it would take many hundreds and probably thousands of repetitions for them to learn that new skill, when you have a brain injury it is more likely to take many hundreds of thousands of repetitions to learn a new skill. For Terri it can take years of repetitions and so every time she is able to repeat a skill she is closer to gaining the skill. Every repetition matters.

Q. Please explain briefly what you said about brain injury does not mean that you have intellectual impairment.

A. There are many examples of a person having a severe and even near profound brain injury where the impact is on physical ability, and yet they have retained a high level of intelligence. The fact that a brain injury can mix words and sounds up from brain to mouth, and can affect the individual’s ability to make their body do what they want it to do means that communication is very difficult and a lot of effort must go into finding a communication system that works before any measure of intelligence can be made.

Most forms of intelligence testing rely on the ability of the person being tested being able to communicate and or being able to make their body respond at will. A brain injury can severely impair communication and body response without impairing intelligence.

Q. I see that you do a lot to stimulate all the senses. Please tell more about the sensory garden and the musical instruments.

A. Recovering from a brain injury is a lifelong process. Very early on an experienced therapist told me to stop having 'therapy time' with Terri, rather, to consider every interaction and every activity to be therapy, some activities are modified somewhat, some activities are just a part of a whole person therapy program. This same therapist also told me that some things that are therapeutic are meant to be pleasant as well.

Therapy does not have to be all hard work.

When Terri was six an English gentleman named Robin Howitt came to her school and offered to do music therapy sessions with kids whose parents were in agreement. I spoke with Robin as I was a bit concerned with someone taking too much interest in Terri especially since so many people at the time were busily telling me how Terri was just never going to progress.

Robin explained the benefits of the Nordoff Robbins Music Therapy system and how the very worst thing Terri would experience is having someone on one time with a person playing a muscle instrument for her, but there had been much evidence of even profoundly disabled kids and adults responding well to music therapy. I agreed to let Terri do music therapy.

Over the years Terri progressed slowly, at first just responding with a wiggle of a finger or a half smile then slowly unfolding her body to participate in the music making. These days Terri has a broad range of musical instruments and they provide her with a means to express herself, something she can do independently, and an experience of success, but most of all they provide her with a great deal of enjoyment.

Two years ago the Nordoff Robbins Music Therapy Centre started a singing group that was open to everyone. Terri, her sister and I all joined and still attend weekly. This is the highlight of our week. Over the two years I have seen Terri join in more and more with the singing, harmonising along, and now that she has her own piano she plays that throughout the week and sings along in lovely little melodies that she makes up as she goes.

Terri's sensory garden has only just been planted, this is outside her bedroom and there is a deck leading from her room out to the garden, a solar powered pump works a fountain in a pond providing the sound of flowing water, the plants I have chosen, all Australian natives, will grow and fill the spaces with a wide variety of scents, textures (soft and fernlike to thorny) and tastes (many plants are bush tucker plants that are used by Australian Aboriginal people), as well as colorful flowers with the plants flowering over varying seasons throughout the year. By choosing native plants it will also provide shade and shelter, food and resting places for native birds and animals. We are lucky enough to live on five acres and have wild kangaroos, echidna, antechinus, and various other animals pass through our yard, having this garden so close to Terri's room with native plants in it brings her into closer contact with the birds and animals. Another feature of the sensory garden is the wind chimes, ornaments, and a cocoon swing which all add variety of experience. Curling up in the cocoon swing on the deck in the afternoon and listening to the wild birds in the nearby trees is relaxing and allows Terri to more fully experience nature.

It is my personal belief that nature and music are both very healing.

Q. Any additional thoughts about being a caregiver of someone with a brain injury?

A. When I started out as a caregiver for a person with a brain injury I was 24 and Terri was six months old. I knew nothing. Absolutely nothing about brain injury or disabilities at all. It was my very lack of knowledge that led me to want to be very well educated on brain function; physical, emotional, and mental development; and disabilities.

I asked every doctor and therapist for the title and author of a book I should read. I asked them for information all the time; I never left an appointment without some more information. When Terri was in a swing I would sit and read as I rocked the swing, when she was sleeping I would read, I read dozens of books, hundreds of articles, and continue to this day reading on every topic related to Terri's disabilities. I can easily say that I have forgotten more than I remember.

Very early on I realized that just because someone has a title to their name does not mean they know all there is to know and that if I wanted Terri to have every chance to progress as well as she could I would have to be able to read, understand and collate information into workable ideas that were practical and could provide positive outcomes for Terri. It really was up to me.

Q. Feel free to discuss anything that you like which I missed.

A. Terri is a great joy to be around. She loves life and never gives up! She is a great inspiration.

To learn more about Cheryl's care-giving bond with her daughter, visit their blog, Life with Terri Lee. Recently, O’Brien had a post about the need for caregivers to have their own interests and time aside from being a caregiver. She reminds us that it is better to help give respite along the way than to wait until a person is burned out. I appreciate all the insights about ways to provide resources and support to caregivers so that they can focus on providing the best possible care for their loved ones.

(Editor's note: Go orange! The entire month of September all population-we™ posts will be written in orange to aid No Kid Hungry's effort to bring attention to their nonprofit's cause and help end childhood hunger in the U.S. Read more about going orange at our post on Help End Childhood Hunger for No Kid Hungry.) 

-population-we™ blog post by Barb Bohan

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