How should we begin to think about meaningful support to caregivers in our lives? Let’s start by better understanding caregiving.
Kathy Brill; Nov. 24, 2015
Caregiving in America has changed its complexion in the last few decades, thanks to so many previous advocacy efforts (e.g., the Americans with Disabilities Act (ADA) and theOlmstead decision).
We need to recognize that every single disability rights law, ruling, regulation, etc. intersects with each and every facet of our lives as caregivers and the lives of our loved ones. They intertwine beautifully, when enforced, helping to create happy, healthy homes and quality lives.
Prior to this, it had been assumed, if you had a child who had a disability, you would most likely agree to place them in an institutional setting or state center. If your aging parent needed assistance, it was assumed you would most likely agree to place them in a nursing home. Not anymore! Now, it’s the norm to support those who have additional support needs to live with their families or independently in their own communities, to “age in the community.” This is a time to celebrate our progress! And, without the generosity and dedication of caregivers, our friends and family who require caregiver supports would not be able to have the same quality of life. We need to honor, celebrate and thank caregivers, and what better way to do so than to ensure their needs are supported as well.
How should we begin to think about meaningful support to caregivers in our lives? Let’s start by better understanding caregiving.
First, each caregiver has individualized support needs, just like our loved ones who are assisted by them. There are many ways in which we can support caregivers, but we need to make sure that we support them in ways that are truly meaningful to them. This means that we cannot assume that if one caregiver loved her gift certificate to a day at a spa, that all caregivers will most likely love the same thing. And while respite (or the gift of time) seems to be the top support assumed to be desired by caregivers, that, too, is not always the most valued choice.
Our starting point needs to be to find out what would be a meaningful support to each caregiver. We should never assume the needs of one individual are the same as another, simply because the family structure, or characteristics of their caregiving duties, may be similar.
Also, and secondly, it is interesting to note that society seems to assume our world is full of depression and stress just because we are caregivers. While these emotions may be present at times, they are usually because of one of three things:
1. Not knowing what types of support would be helpful,
2. Difficulty in understanding and dealing with complicated systems to access necessary supports and services in a sufficient and timely manner, and
3. Judgmental attitudes of others.
As we support caregivers, we need to understand it is normal for caregivers to show feelings of being frustrated, resentful or angry at times—as does everyone! At times, we are drained of energy, and caregivers need to know that it’s okay not to be perfect in giving care. Allow the caregiver in your life to express those feelings and actions without feeling guilt.
At the same time, caregivers may feel defeated; we need to be aware, and take action both to prevent and to problem-solve when this happens. When any of us hear the words “burden,” “coping,” or “feeling trapped,” we should realize they are red flags and we need to re-think the supports and services to that family. We will know it is time to problem-solve. Caregivers do not want to have those feelings, or hear them described as such by others.
Unfortunately, acts of self-preservation may occur when the pressures of unmet needs become overwhelming. In the pursuit of stress reduction, families often feel forced to consider and accept more easily accessed, but segregated, services and placements. Our systems of support have failed when this happens. Caregivers who are parents of children of all ages need to be supported to allow their children to be self-determined and live self-directed lives.
Having worked with Parent to Parent organizations since 1995, I’ve learned a lot about the individualized needs of caregivers. While each of our needs may differ, there is a common process we all go through. Here’s a peek at my own real-life caregiver adjustment process.
My youngest of three daughters was born three months premature in 1989. This was the beginning of my own experience at learning firsthand how individualized caregiver supports need to be. In the beginning, I resented it when a family support coordinator for early intervention recommended respite to our family when our daughter was less than two years old. Does she think we can’t handle our stressors? Does she see us as being weak? Are our insecurities that obvious?
All sorts of thoughts passed through my mind. I had gotten used to the stress and anxiety of parenting a child who cried constantly and needed supports, and being the eternal optimist that I am, assumed she’d be outgrowing the crying soon and we would all be able to sleep again. I don’t really remember what I thought about the needed physical supports, but I do remember assuming it would all work out without interventions. I was stubborn, indeed. However, we begrudgingly accepted the six hours a week of respite offered.
It helped immensely and immediately, to my chagrin. I was shocked by this strange, déjà vu feeling of normalcy and self-control. I was able to think clearly for the first time in two years. This allowed us to think about steps necessary to problem-solve, which we did, indeed. Honestly, I’m not sure how our story would have turned out if we hadn’t been able to have those few hours of respite to reflect and regroup. Having two additional older children compounded the complexities.
That was a turning point for us, and the rest is history.
We methodically built each needed support into our lives from then on, giving all of our children – and ourselves – quality lives.
Thirdly, if it is suspected that there is overwhelming physical and/or emotional demands on a caregiver that takes a toll, look at what might be the specific physical or emotional demands experienced on a regular basis. Not all caregivers complain about their responsibilities, so you may need to sleuth a little! What are those potential stressors, why are they occurring, and is there anything that can be done to help change that? Is it perhaps the lack of needed supports for their loved one that causes additional stress, and are they assuming too many responsibilities?
Technology was, and continues to be, a huge part of our daughter’s supports and quality of life, and hence, our own. She uses a power wheelchair, numerous bluetooth wireless technologies connected to her joystick so she can interact with her environment, and several additional types of health-related technologies. She uses personal care attendant supports. It took years to figure out the optimum supports, and they continue to change. We learned how to successfully maneuver through the maze of changing emotions and feelings. We found that “happy, ah-ha place” where problem-solving, creativity, systems and supports all blend together!
One of the most powerful forms of support for caregivers is getting them connected to other caregivers who have experienced similar stressors and barriers, and have perhaps figured out ways to overcome them.
When we talk to those who have had similar experiences, and they can give us ideas or solutions for our concerns and/or barriers, an amazing diminishment of stress can occur! These peer-to-peer supports are monumental in easing stress and anxiety, while at the same time empowering and teaching other caregivers about all types of possible supports. These peer-to-peer support recommendations can include simple, often brilliant, ideas born of pure creativity and requiring little to no funding. Self-care suggestions, family relationship issues, friendship-building activities, recreational opportunities, vacationing, technological and attendant care suggestions, etc.—there is no limit to outcomes of peer-to-peer support. Caregivers can use those ideas that work, and then fill in the remaining needs with more formalized supports. Peer supporters “walk the walk” with caregivers, so individualized emotional and informational support is always a part of the journey.
We want to be able to CELEBRATE the fact that we are able to enhance the quality of life of our loved ones, whether it is because of aging, disability or illness.
We want to be able to change negative attitudes and assumptions about those who have disabilities. We want the world to see the realities, the possibilities and the potential, and to eliminate the currently pervasive stigma that exists.
How wonderful it is to have our loved ones not only continue to be a part of the community, but also to have happy, fulfilled, quality lives while successfully reaching their potential. Support to caregivers is key to making this happen!
Kathy Brill M.Ed., executive director of Parent to Parent USA, is mom to three daughters. Her youngest, Alexa, age 26, was born three months premature and uses numerous personal and assistive technology supports to assist her in being successfully and fully included in all aspects of her home, school and community. Kathy had been director of Parent to Parent of Pennsylvania for seven years, hosting the International Parent to Parent Conference in 2002. She currently serves on the National Advisory Board on Improving Health Care Services for Older Adults and People with Disabilities. She previously served as chair of the Pennsylvania State Interagency Coordinating Council, president of Pennsylvania TASH, and secretary of the National Coalition on Self-Determination. She also was a trainer for Natural Allies in Pennsylvania, an effort to build collaborative partnerships between higher education in early childhood and parents who are raising children with disabilities and special health care needs. Kathy received the National Council on Disability 2006 Leadership Award in appreciation of outstanding contributions to the improvement of disability policy in the U.S.