Caregiving is a solitary path. Watching Dad take care of Mom and even helping him, I can see the toll it takes. She is dependent upon him. We went to a concert together and I saw her needing him. I was right there, but I am not Dad. She seemed to forget how to get into the car and how to walk when I was helping her. I did all the things I usually do but they didn’t work this time. Fortunately, he was there to step in and get her moving.
It is tempting to not venture out. Yet, none of us are to the point where we want to give up trying. She loved the concert. She clapped and bobbed her head to the music. She watched the children they called up on the stage to participate. It was good. She was engaged. Her brain was working in the moment. Afterwards, not so much.
Outings are good for her brain, but it is hard to prepare and get her there. Just getting her in and out of the car is enough to tire us all out. I am only there occasionally. Melinda is there occasionally. Dad is there day in and day out. He is the primary caregiver. All the rest are secondary. We make point to be there regularly, but it isn’t the same as being there all the time. Being a caregiver to your loved one is a solitary job. Even with others committed to be there to support and encourage, you walk the road alone.
I know this from my own 30 plus years of caregiving. When someone is dependent on you it seems like there is never a break. Bill is much more functional than mom, but he has deficits caused by a board hitting him in the head at 60 miles an hour. They are things that are not noticeable to most people. I help him with those things. I have done it since Feb. 2nd 1988.
I have supportive friends and family who know our situation. Yet, I am the one who carries the load of stepping in when I am needed. I am the primary. Bill says, I am his frontal lobe and that isn’t too far from the truth. All the executive function he is missing, I provide. I do this while also providing my own function, working a couple jobs, guiding our adult kids, and helping parents, etc… It is my life’s work. It may not look glamorous because it is not. It may not even be noticeable to most people, but that is not the point. It is the road I walk. Alone.
In this season of helping our elderly parents I can see from the outside looking in how much energy (physical and emotional) caregiving takes. I have known this from the inside looking out for many years, but to see it from a new perspective solidifies the isolated nature of caregiving. Now my husband is a primary caregiver for his dad, and I am the primary for the primary. There is nothing to say about it really. It just is a path to follow to its natural conclusion. For some it takes years and years, for others it is relatively quick.
For all, it leaves a scar. The Wound of Watching. Watching your loved one get or be sick. Watching your loved one struggle. Watching your loved one fade. Whether they are losing their cognitive function or they are losing their mental health. Whether they have lost their hair to disease or their leg to an accident. The loss is huge for them, and they wrestle. You wrestle with them wrestling. It is secondary trauma for the caregiver. A helpless state of hurting because someone you love is hurting.
The Wound of Watching is a deep one which digs into your inner being. It is open and it hurts like, well, an open wound. It is raw. It is difficult to breathe through the pain of it. You put a Band-Aid on it and try to keep it from getting septic because you know if it festers it can kill you. But caregiving limits how much treatment you can get for your own wound. Wrap it up and keep moving for your loved one. It feels as if they have the greater need. That need doesn’t end until the end, and so your wound remains open for the duration.
It is a 24/7 job in which you feel the burden of every decision you make for the two of you. Wondering if you are getting it right. We all know those who got it wrong. Wrong doctor or hospital. Wrong insurance or investment. We choose. We risk. We desperately want to get it correct for our care-receiver. But it is guessing at the future and what you will need for it, in order to plan today…only you don’t know the future. To worry seems like torture to yourself, but to not prepare seems careless. It is a mental game which takes an emotional toll. Forever and always the what ifs haunt and steal your sleep.
Only one who has walked this road understands the lonely places of the Wound of Watching. It seems from the outside looking in, as if there is enough support in place. Family helps out. Friends speak encouragement. But from the inside, it seems like a solitary place between you and yourself. Days where it is hard to put one foot in front of the other because the load is so heavy, are frequent.
The trick is to learn to live in solitude. It doesn’t have to be a prison. It can be a quiet place of renewal if you can find that part of it. It is the finding, the searching for a soft place to land that is difficult. There are not many hours in the day of a primary caregiver for soul searching. Therefore, the Wound of Watching, remains exposed indefinitely. We are the walking wounded…caregivers. Take note of our appearance of strength, because for all we endure and walk through, we are not as strong as we look.