The Family That Cares Together, Stays Together
Caring for Kids
Caring takes on many many forms by a variety of people. Whether its a spouse, partner or next door neighbour. Majority of personal care skills are performed by the immediate family. It is a similar scenario with caring for children. In 2008, 26% of children with a disability or illness were cared for in their own home by immediate family. This statistic raises a few questions about caring for a child. Does that mean 74% of children were institutionalised because no immediate family could support them? Did the families feel overwhelmed or fearful about the amount of caring skills needed to properly care for a child? Fear can be all consuming and suffocate the willing desire of a family to care for a loved one.
Think about if someone you loved suddenly needed full time care.
All night .
Would you know what to do? First, you would want to find how to gain the appropriate care skills, instead of hoping you knew what you were doing.
The next phase would be finding support services and any information available to care for a person so they may live a more fulfilling life.
This is what Dennis’s parents went through all of his life to date.
Dennis presented to the emergency department one afternoon with severe tummy pains for 3 days. He was very stressed and anxious about being in the emergency department let alone looking down the barrel of an admission to hospital. Dennis is a 40 year old man with Duchenne Muscular Dystrophy*. He has been wheelchair bound since the age of 10. Imagine being 10 again, your friends are running around having fun and you become weak like jelly that a wheelchair is your only mode of transport. Dennis’s Mum and Dad have always been there for him providing all the care and support he needs. This explains a lot about Dennis’s anxiety towards hospital visits because his support network would be gone.
Dennis’s parents were amazing to watch . Their ability to know exactly what Dennis needed and how to do it came from years of experience and dedication. While Dennis was off having an X-Ray , I asked his Mum (Cheryl) how did they cope. This was particularly important considering not a lot was known about Muscular Dystrophy when Dennis was a child, especially since Duchenne Muscular Dystrophy* wasn’t identified until 1987 when Dennis was 14 years old.
Since 1:3,300 boys can be affected by Muscular Dystrophy, there was very limited support services available to the family. Cheryl and Pat (Dennis’s Dad) spent hours reading all the books on Muscular Dystrophy and actually went door knocking to care agencies to find out what services were available at the time. All that time, effort and research has made a huge difference for not only Dennis, but for Cheryl and Pat as well. Dennis’s parents sourced a really effective electric wheelchair that was controlled by a joystick. He only had limited hand movements, but the skill and precision driving mechanism on this ambulatory aid were top class. Pat had carried all the equipment into hospital. He brought slide sheets*, a transfer board, a gel cushion seat: the lot! Just missed the pineapple.
The Touring Party
On this occasion in the emergency department, the doctors had worked out Dennis was suffering from a blockage in his stomach that required admission into hospital. After packing up all the equipment and clothes, Dennis was escorted to the ward. Upon arrival to the ward, Dennis wanted to get changed into some new PJ’s. Instead of waiting for the nurses to finish handover to assist in moving, Cheryl , Pat and a friend, Sharon, proceeded to help move Dennis from his wheelchair to a shower chair. It was a major event trying to get Dennis transferred. They had a set routine for placing the slide sheet and transfer board under Dennis’s legs, then Cheryl pushed while Pat twisted from left to right and Sharon pulled at the other end. The transfer looked like hard work, especially that they are in their late sixties when trying to move a 97kg person who cannot assist them. They perform the same routine 5-6 times a day. Pat suffered with a tired aching back after years of transfers.
Why Learn Patient Care Skills
If they were taught the correct patient handling skills early on in their careers as caregivers, they would hopefully in better shape and less prone to injury. Cheryl and Pats biggest fear is when they are unable to care for Dennis any longer, who will?
For more skills on decreasing injuries from patient handling sign up now to inightingale.
P.S. Are you a carer with similar experience as Dennis and Family? Tell me your story . Please leave a comment for me.
SLIDE SHEET: slippery sheet for sliding a person
MUSCULAR DYSTROPHY: A group of inherited diseases of the muscle that cause slow degeneration and weakness of voluntary (controlled by your own will) muscles
Australian Families 2008
Duchenne Muscular dystrophy