Hearts Go Out to Our Personal Caregivers
/By Barby Ingle, PNN Columnist
With Valentine’s Day coming up and February being Heart Month, I thought it would be fitting to say thank you to my caregiver and husband, Ken Taylor.
Ken has been working overtime this past year, and especially in the last few months as I have been ill with Valley Fever. He is one of those caregivers who dedicate their lives to helping pain patients, making our lives better just because he cares.
Like many caregivers, Ken is not paid for assisting me or the many others he has helped over the years. He does it out of love, respect and dedication.
Caregivers have a large responsibility once they take on the role. Ken has helped me with personal care, such as bathing, grooming, dressing me, and helping with laundry or other cleaning duties that were once things I loved doing.
Not being able-bodied has really put a lot of pressure on Ken, but he makes sure I am taken care of every day.
Luckily for me, he is also great at cooking. I am the worst cook I know and was that way even before I developed disabilities from chronic pain and other rare conditions.
Ken loves to cook and does most of the meal prep, shopping and other housekeeping duties. He does it with a smile most of the time.
KEN TAYLOR AND BARBY INGLE
Some other responsibilities Ken has taken on include help with packing for a trip, making sure my wheelchair was charged up, providing transportation and being a great emotional support for me. Many times over the years he was the one who made sure I was put together and looked “camera ready” when we had a TV crew filming or doing interviews as part of our advocacy for the pain community.
Ken gets love, credit and thanks from me often, but I sometimes feel that his work – like most caregivers -- is not as appreciated by society. People don’t realize how much our caregivers help us.
Here is a short list of 10 things that caregivers do:
Assist with personal care such as bathing, grooming, dressing, toileting, exercise, meal preparation, shopping, housekeeping, laundry and other personal errands
Care for the elderly such as orienting someone with Alzheimer’s disease or dementia
Communicating with healthcare providers as an objective advocate and relaying information from providers to other family members
Providing support as a stable companion and confidant in all matters personal, health-related and emotional
General healthcare such as overseeing medication use, appointment reminders and help with exercise
Home organization and cleaning
Mobility assistance such as help with getting in and out of a wheelchair, car or shower
Monitoring a care plan and noticing any changes in the individual’s health and reporting them to healthcare providers
Providing companionship and general supervision
Transportation such as driving to and from activities or running errands
Our caregivers also help us navigate and negotiate our way through the complex healthcare and education system. They are our voice when we’re not up to the challenge of a given situation.
Accepting help from a caretaker doesn’t mean giving up your independence. By accepting help when needed, you can build on your ability to help yourself and spend your energy on enjoyable activities that would be missed otherwise. Caretakers provide guidance, family empowerment and appropriate help. That is why it is important to include them in your care decisions and in setting expectations.
One goal I have as a pain patient is to increase my daily activities as much as I can. Sometimes for me this includes the use of a wheelchair and other assistive devices. I look at them as a way to get more activities done independently. For years I was unable to walk long distances, so I got a scooter and was able to ride two blocks over to our mailbox to pick up the mail. Once I got my scooter, it gave me more freedom and I was able to accomplish more, relieving some of the duties Ken was doing.
Thank you with all my heart for my caregiver! May he always choose to help me when he can, take breaks when he needs them, and may we support each other in all our days. Thank you to Ken and all caregivers who are making our lives more manageable.
Barby Ingle lives with reflex sympathetic dystrophy (RSD), migralepsy and endometriosis. Barby is a chronic pain educator, patient advocate, and president of the International Pain Foundation. She is also a motivational speaker and best-selling author on pain topics. More information about Barby can be found at her website.
