What happens when the “cheerleader” gets ill, that is, your caregiver can’t perform his/her duties due to illness? Difficult question and one I’m certain we have all dealt with at one time or another. I felt this was a much needed article for many that are dependent to some degree to a person or caregiver/angel for daily or occasional care. As a newbie SCI paraplegic, I still need some assistance with transfers. I was 48 years old at time of injury and my upper body strength and muscles were not physically powerful, I was athletic when I was younger, but let’s be honest, when we are in our late 40’s, we just can’t do the things that we did in our 20’s and 30’s. So my husband assists with transfers but he recently became very sick with the flu and he was so weak, he wasn’t physically able to assist with any tasks.
Now if you are reading this article and you can physically walk, then your answer may be, “well find someone new to assist”, but it’s not that simple, hence my thoughts on this writing. For me, I feel a sense of security with the people I know and love assisting me with my care, ones that know exactly what to do in certain situations…ones that know how the chair AND I will react when doing a task. For example, a friend of our family loves to entertain and frequently has outdoor gatherings. Depending on the weather, we have to relocate into the house and there are a number of steps, not just steps to ramp, but steps, deck, and then more steps, which require physically transporting me in chair up and into house.
My husband and sons are very good at the process. But once we didn’t have the usual entourage and others stepped up to assist. The maneuver to carry me up occurred and one of the helpers pushed upward too forcefully pinning my husband literally under my chair with my weight on top of him. Needless to say, it was scary when the director of the operation is under your chair and all you visualize is ground several feet under your chair because you are precariously sitting in an incline at the mercy of the crew. Needless to say, I tried to keep my cool; the last thing needed was for a woman to be screaming out of control. Just imagine it!! J
My point is this….we (us in wheelchairs) have VERY precise ways of having care performed. It can’t be done simply with others stepping up to help. So what is the best suggestion when the cheerleader can’t perform his/her duties? This also occurs when the caregiver is stressed by the amount of care that is rendered on a daily basis. Caregiving can be rewarding, but it can also be challenging. Stress from caregiving is common. Women especially are at risk for the harmful health effects of caregiver stress. These health problems may include depression or anxiety. However, there are ways to manage caregiver stress if is indeed recognized and addressed.
Interesting article I found when googling this topic, “The 7 Deadly Emotions of Caregiving” written by Paula Spencer Scott found on https://www.caring.com/articles/7-deadly-emotions-of-caregiving. Check it out and the caregivers reading this will feel a common thread. Being a constant caregiver with no outlet can lead to medical ailments. But going back to my topic, #4 on this list of deadly emotions explains my above situation. #4 on the list is WORRY – explained as good intentions, love, and wanting the best for your loved ones are the wellsprings of worry. Focusing intensely on the what-ifs provides a perverse kind of comfort to the brain: If we’re worrying, we’re engaged. Of course, that ultimately triggers more worry and upset because it’s engagement without accomplishing anything.
My husband agonized while he was sick, worrying not about himself but that I wasn’t getting the care I needed. I am independent enough to survive but still he worried, which didn’t help him in his illness. I kept telling him I am low maintenance, but he has high expectations and standards, something that he agonizes with when someone else renders assistance. Remember several articles back when I explained that the ICU nurses felt I may have had a head injury due to my hardheadedness of care? Yep, I’m that nurse. That’s what we do; figure out how to get care taken care of. So I was fine but still my caregiver worried because he is very protective and that has not changed since the first day in the hospital after our accident.
But what if he was sicker longer than a few days? What then?? Or what if your caregiver doesn’t show up for duty? Being a paraplegic, I still have use of my arms but what happens to the quadriplegics who live alone and wait for caregiver to show up in the a.m. to assist with dressing, bowel care, and morning routines? What happens when the spouse is the daily caregiver and unplanned things happen? Google ‘caregiving’ and you will find so many articles on the topic. That is why it is important to have a plan in place just in case. Here in Virginia we receive a “Hurricane Survival Leaflet” at the start of every Hurricane Season, and we SCIs should have a similar plan in place in case of an unforeseen emergency. Spouses need a break too. BUT, and as in my other articles, this is important, the other caregivers need to know the care sequence. I know as a nurse there are many ways to provide care, but there is only one or two for us to handle, when someone comes up with something totally out of left field, that is not going to go well.
One way is not always the best or the only way to provide the care. So caregivers need to be open to the individual’s way of having treatments performed. That’s also a two-way street; the care receiver may have to be open to alternate options for therapies. So both sides need to keep an open mind. Above all, if your caregiver/spouse needs a break, give it willingly. Please…..they need an enjoyable break for both of you. But care needs to be adequately provided so the caregiver/spouse doesn’t worry and how is that done correctly? I recently posed this question to a wife of a recently injured quadriplegic, Brandie; her husband was injured 9/19/15, so she is new at being a caregiver, “what words of wisdom to you have for others who find themselves as being the constant caregiver?” She said the biggest lesson she has learned is not to judge the others that you thought would be available to help out but weren’t.
She reiterates that it is fine to ask for help when you are tired and don’t feel guilty accepting the assistance. Brandies’ husband just began a new job when his SCI occurred and Brandie was a CPS (child protective services) investigator. She explains her biggest stress or is not being the constant 24/7 caregiver but the financial stress of making ends meet when jobs are lost. We all understand that…..there is never a good time for a devastating injury to occur costing loss of wages. Accept help if offered until you can make other arrangements that fit into your financial situation. Many people opt not to accept the help if offered. Accept it with a smile on your face and go out for a cup of coffee, talk a long walk with your friend or visit with a good friend, but do something that makes you feel revitalized. It will help you both in the end.
Google caregivers in your area, interview, and perform background checks on the individuals. Train them as to how to perform the care to your loved ones. And if you are the one providing the training, be clear and concise to the learner. Bite your lip if need be, take a breather, and start the explanation again in a different manner. It will all work out with a little give and take on both sides. Peace be with each of you……
For questions, you can “Ask Patty”
A few references that may be helpful although you may find many, many more:
Caregiver stress. Obtained June 7, 2016 from http://www.womenshealth.gov/publications/our-publications/fact-sheet/caregiver-stress.html.
The Seven Deadly Emotions of Caregiving. Obtained June 7, 2016 from https://www.caring.com/articles/7-deadly-emotions-of-caregiving
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