WHAT THIS CAREGIVER REALLY THINKS

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It is always my privilege to host the writing of Diane Stonecipher. 

Here, Diane reflects on the social, moral and political implications

of her experience caring for her son. Diane and her family live in 

Texas.

For as much attention as caregiving is finally getting, it can still be a very invisible place. One of my co-workers mentioned that they really wish they had my schedule, i.e. a part-time job. I have to breathe deeply when someone says this and decide how much I care to share. To “let it go” or remind someone that things are never as they appear.

My full-time job is being a primary caregiver for a 28 year old son who has been profoundly brain-injured since birth. He is blind, quadriplegic, non-verbal and developmentally approximately 6 months of age. I work part-time, not because I want to, but because I cannot leave my home unless someone else is there. They need to be present and able to carry out his care. My husband and I raised him and his 2 younger brothers, who have since begun their lives as adult young men. I am now a 63 year old woman taking care of essentially, an infant.

Much as I would like to be working in my field, this has been quite difficult to do since his birth. My husband has had difficulty as well. We have been intermittently employed, unemployed, insured and uninsured; currently employed part-time and uninsured. This then limits career growth, retirement savings and dramatically increases day to day stress. Always one event away from collapse of the duct-taped “success”. Things are not what they seem.

Caregivers have many things in common, yet all circumstances are different. Some are caregiving from afar, some are overseeing care, some care for loved ones in their homes, some have total responsibility and some share that responsibility with other family members and trusted professional caregivers. Some have had good relationships with the people they are caring for, others have had fractious ones. Some are grieving the loss of what their loved one was and others are grieving what was taken from the start. Some people care for those with sweet dispositions and others are less fortunate.

Anyone who is caregiving will tell you that it is tiring, isolating and often stressful. I know no one who becomes a caregiver who thinks it is easier than they thought it might be. For some people the time frame is relatively short or they can at least see when it will likely end. Others, myself included, are in a time warp that affects just about every aspect of life.

There are many aspects of caregiving that are very enriching. An appreciation for what is. A tenderness for vulnerability that extends to all. The forced slower pace allows some things to be noticed that may have not been so otherwise. You are living from your heart in most moments. I am fortunate, in that my son is not combative or uncooperative. He is a beautiful person who has absolutely no capacity to harm. He trusts implicitly and has patience beyond words.

Fatigue is, however, a beast. One that robs us of our health, our desires and sometimes, our sanity. Parents of infants feel this, all the while knowing their baby will, albeit it not soon enough, begin to emerge from complete dependence. For many caregivers, this is not to be. It can be very difficult to keep going physically, emotionally and sustainably.

It is time we looked at how to help caregivers with more intention and practicality. Why are we punishing people who can’t work enough hours for insurance? We are we making this untenable situation more so by having them carry that burden themselves? How can we expect caregivers to really take care of themselves if they cannot afford adequate health insurance? What good does FMLA do, if you can’t hold down a job? How can we expect caregivers to get the help they need if they can’t afford to pay outside caregivers to assist them? If we are to care for each other, we must have the tools to make it possible.

This is what we need to be asking of our elected officials. We come in to this world vulnerable and we leave it the same way. We must begin to treat people who are fragile, no fault of their own, with kindness and respect. It could just as well be ourselves and it likely will be at some point.

Full-time caregivers should not have to “afford” insurance because they are not insured at work or their premiums should at the very least be “deductible”. Full-time caregivers should be compensated in some way because they often cannot contribute to their social security. Turning caregiving over to the corporate world has made affording it out of reach for many. We are in essence penalizing caregivers for doing what they do.

We must also galvanize, as a country. and create a care corp of sorts that would provide training, better wages and benefits and a career for those dedicated to caring for others. Not a volunteer system, but an infrastructure for a care model. This will help family caregivers and those navigating their own care. This will create jobs and facilitate a family caregiver’s ability to work outside of the home. This is an economic and impact-oriented solution. It is also a way to cultivate our kinder, compassionate natures.

Lastly, if you know anyone this holiday season, caring for themselves or caring for a loved one, let them know that you see them.