There are certain skills that turn spouses, parents, family members and friends into power carers who go beyond the routines of daily living to support and advocate
Power caregivers are not those who use their power to control. Rather, they use their position to empower those they care for. They possess personal power, which manifests as quiet competence, assertiveness, gentle kindness, grace and going the extra mile. Personal power understands its limits and how to care for your own needs and wellbeing. It understands that sustainable caring requires a balance between giving and self-replenishing.
Mary McGrath wrote on the subject stating that it starts with a discovery of your own personal power when you make the decision to step up in support of someone in need. You recognise existing skills and talents gained through your life experience and redeploy them in the role of caring.
By identifying these skills and focusing on them, you can move into the role of a power caregiver by supporting and advocating for the needs of the person you decided to care for. Mary lists the skills that power caregivers might have developed that can translate to caregiving. These have been adapted in this article to specifically speak to the needs of persons with spinal cord injuries (SCIs).
Be an active participant
A power caregiver should be an active contributing member of the team. This might include engaging with medical staff. If possible, join meetings that evaluate progress and plan the rehabilitation.
Get to understand the rehabilitation process and contribute by sharing your knowledge of your loved one’s personal preferences and concerns. When attending meetings with rehab professionals (in-hospital as well as post-discharge sessions), prepare your questions beforehand. Think through your caregiver activities and the issues that arise from them or consult your loved one if they have another carer. Discuss the list with your loved one and agree on the content of your combined list.
If a caregiver has been employed for assistance at home, get to know them and understand the scope of their work. You can assist your loved one with drafting an activities list as a reference to ensure everything is covered. If need be, act as mediator or facilitator between your loved one and the employed caregiver. Good communication is half the battle won.
Be sure to always explain what you propose to do and get permission from your loved one before you support them in the role to ensure they are comfortable with your involvement. Thus, you get to act on their behalf rather than speak for them.
Plan ahead for independence
When someone experiences a major traumatic event such as an SCI, it frazzles the mind. A clear mind is needed to plan for optimal future living. This is where you, the power caregiver, can add incomparable value.
Quiz the occupational therapist about making the home accessible. Think big and small to cover all the bases. Thinking big largely involves accessibility, transfers and dressing. Consider:
- Where to place grab rails in the bathroom;
- Refurbishing the shower into a role-in cubicle with a shower chair or acquiring a special shower wheelchair;
- Whether the bed is an appropriate height for easy transfers;
- A dressing and undressing routine; and
- Transfer routines for cars, bed, chair, toilet and so forth.
Thinking small can including:
- Acquiring special eating utensils and/or tools to assist with doing shirt buttons;
- Arranging cutlery and crockery to facilitate independent coffee, drinks and snack making;
- Ensuring clothes, toiletries and other daily essentials are within reach;
- Creating a wheelchair space at the dining table; and
- Lowering cupboard clothes racks and selected mirrors.
These lists are by no means complete. As new needs become apparent, find solutions. The aim is to promote independence and self-confidence.
Stay flexible
Once your loved one gets home, it might be necessary to make further adjustments. Keep an attentive eye on their movement about the house and make changes as necessary. Rearrange whatever can be changed to facilitate independence in daily living. Make the home a safe place.
Also consider your own activities schedule and reorder your caregiving activities to better fit in with your work, home and social life. Don’t neglect yourself!
Being prepared with more planning
Social and away-from-home events can become very threatening for a person with an SCI. Their home environment becomes a comfort zone. Leaving it becomes scary. Forward planning is a necessity.
When visiting a friend, consider the accessibility of their home, garden pathways, doorways and toilets. If needed, bring special equipment (such as adapted cutlery) and prepare the friend for these assistive devices to be used. If the home environment is not suitable, rather meet at a suitable restaurant.
When planning a holiday, finding suitable accessible accommodation can be a challenge. Wheelchair-accessible is often miss-equated with mobility-impaired equipped. Draw up a list of pertinent questions to ask and, if possible, ask for photos of the room and bathroom.
Remember to assist, but not control. Plan the outing with your loved one. If they want to take the lead in enquiring, stand back. If they feel uncomfortable to do so, know what to ask for.
Advocate on their behalf
It is unbelievable how many people think that because you are in a wheelchair, you must also be mentally affected. If I go shopping alone, all is well and people often comment that I inspire them.
If I go shopping with my wife, I often get ignored and my wife is questioned, “What size shirt does he wear?”, “What is his shoe size?”.
Then I want to put my head on my shoulder and let the spittle drool from the side of my mouth. Fortunately, after 55 years together, my wife knows me by now, so she quickly responds, “Ask him. He is not stupid!”. And so, spoiling my fun.
Know your loved one’s strong points and brag about their abilities. Shift the focus from feeling sorry to understanding that persons with SCI are also normal people in our own right. Don’t gush, it becomes embarrassing.
Keep learning
Get to know as much as you can about the consequences of SCI, and particularly about the level and extent of the injury of the person you are caring for.
You can visit the QuadPara Association of South Africa (QASA)’s website for resources. You can also quiz the rehabilitation professionals. The more you know about SCI, the better-equipped you will be to provide support.
Strike a balance
Although you are a power caregiver, you have your own life to live as well. Avoid the trap of over-committing in your role as caregiver. Integrate your caregiving functions with your routine to-do schedule, your work, your domestic and social life activities.
Final thoughts
Be attentive and considerate, but do not take over. Don’t do things that your loved one can do for themselves, even if it is more difficult for them than for you.
My clean laundry is placed on my bed, and I pack it away because my cupboard space allows me to do so. My wife and I take turns to wash the dishes even if it is challenging to reach into the sink from a seated position.
I water the garden despite the fact that pulling a hosepipe after a wheelchair over a lawn is exceptionally challenging. If I don’t want to go to the gym or work on my woodwork projects, I often get my seated butt kicked! Being a power caregiver is empowering those you care for.
