By Carla MacInnis Rockwell
It’s a given that sharing caregiving responsibilities helps prevent burnout but do you actually ask for help when you feel overloaded? Asking for help makes you a better caregiver — logic and reality dictate that if you don’t take care of yourself in EVERY way possible you will not be able to fulfill the requirements necessary to effectively care for the loved one who depends on you.
Often, when you don’t ask and family and friends know you are struggling, you are, in a way, insulting them. Make no mistake, when you’re stretched to the limit, it’s not lost on those near and dear to you — they’re not blind. Is it possible they got tired of offering their help because you kept turning them down? What happens then? They may stop offering and you dig in and are too stubborn to ask.
That may seem harsh, but that’s very often the reality of these times. So many families just don’t seem to have enough hours in their day to ‘pen in’ a block for additional caregiving duties for Dad who needs a break from looking after Mom. When Dad simply will not admit he needs help, family tension escalates. What to do? On the other side is the situation where family members and others should be doing more but aren’t, and the relative on the front lines harbors even more stress and feelings of anger. Open communication is essential.
The same dynamic is in play when caregiving involves a sibling with special needs where a brother or sister may take on the ‘job’, stepping in when parents are no longer alive. What’s often overlooked is that caring for a special needs adult requires a lot of ‘tools of the trade’. In fact, those special needs may involve more than a typical aging person would require. An adult sibling, functioning with the notion that s/he can do it all is playing a fool’s game doomed to failure. With that sad eventuality two people immediately suffer. The situation is even more problematic when the caregiver and the sibling with disability are seniors.
Hanging on to total control puts physical and emotional health at risk. Loss of control escalates while reasoned and better choices drift away. Plodding along, the over-stressed care giver struggles to keep up appearances, feeling there is no other choice to be made; the pretense lasts only so long until it begins to show the cracks. Letting go of misguided promises and an inflated sense of aptitude for the task may be the only way to save the care giver and the beneficiary of that care.
Helping the helper is a challenge and sometimes it may take an outside person forcing his/her way into the dynamic to inject a shot of reality, as sometimes assistance is necessary in order to maintain the safety and well-being of the senior caregiver and the person cared for. Ultimately, it’s peace of mind for the entire family, whether near or far.
We all strive to do right by our family and friends, making an effort on a daily basis not to take advantage of their generosity of spirit but when we are really struggling, we have to break down those self-constructed walls and let others in, if only every now and then.
It’s normal for family caregivers to experience rage, helplessness, frustration and guilt while trying to fulfill the role of ‘the best caregiver ever’. They must never give in to exhaustion, sadness, or depression, perceived in their minds as signs of weakness and failure. What’s lost on them is that it’s likely that very depression is finally driving the bus — a bus that will crash; it’s only a matter of time.
Often the caregiver has ‘hung on’ in the role thrust upon her/him longer than was prudent and their own health, physically and emotionally is suffering. To borrow from a song lyric, they’re convinced that ‘nobody does it better’. The facade disintegrates and all those bottled up feelings are forced to come out and the caregiver has to accept that it’s time for a new plan. Course correction, however, may be difficult if not impossible because of extreme opposition and magnified denial. A last ditch effort to keep it all together.
Most reputable caregivers available through agencies are bonded and if the primary caregiver desperately needs respite, s/he must be encouraged to put a personal care plan in place – time away to regroup and reinvigorate.
Perhaps the life circumstance won’t change and the caregiver role continues on unless and until a medical emergency alters the landscape. But while they still can, caregivers need to seriously think about taking better care of themselves. Respite is fundamental to quality of life for both the receiver and giver of care.
Denial of personal needs is never the solution.
Carla MacInnis Rockwell is a freelance writer and disability rights advocate living outside Fredericton, NB with her aging Australian silky terrier and a rambunctious Maltese. She can be reached via email at firstname.lastname@example.org
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