(Posted with apologies up front: The burden of caregiving ruled this morning and I had to write it down while the emotions were fresh. Perhaps the raw explanation can help give clarity to those who wish to understand.)
If you have not experienced it, you might be curious to know what it is like. Especially if you know someone who is a caregiver, you probably don’t understand what your friend or family member is going through. You can only imagine. And if you are a caregiver, perhaps this description will hit home with you. The feelings are fresh this morning so I shall try to put them into words for you.
When I refer to ‘extreme’ caregiving, I am talking about being a caregiver to someone for more than twenty years. That is not to make small the care that is needed for an elderly loved one. Usually, as care is given to an elderly person whose health is declining, well, you have the increased age that accelerates the decline of health and most likely your ill and aging seventy year old soul is not going to make it twenty more years. Of course, the care that is given is exhaustive while at the same time both mentally and physically taxing. But you wouldn’t change it for the world and there is peace and acceptance in knowing that care was given respectfully to an aging loved one as they wound down to the final years and days of their lives.
The Centers for Disease Control and Prevention (CDC) reported in their 2011 publication, “Summary Health Statistics for U.S. Adults: National Health Interview Survey” that the number of non-institutionalized adults eighteen and older with any physical functional difficulty was 37.4 million. That figure doesn’t even take into account any accompanying mental disability. All I can say is there are a lot of parents out there taking care of special needs adult children. Many of them grow up to be independent adults with jobs and homes where they can function and thrive independently. But advances in medical technology coupled with the lack of funding and services available for special needs adults has left a lot of parents with the responsibility of giving constant care to a dependent adult child.
The task of taking care of adult special needs children is of course done out of love and with a parents’ devotion. They are our child. We will see that they are safe, happy, and well taken care of. But whereas most children are loved and nurtured with the expectation that they will grow up and out of the house to be independent adults, our special needs children don’t quite make the ‘independent’ part of the move. After more than twenty years, the proverbial apron strings are not cut and probably never will be. As a parent, you never feel like the nest is empty. Even when the adult child is living in a different location, be it a group home or in assisted living, the burden of responsibility still weighs heavy. The special needs adult child still calls several times a day, they still get ill and need moms’ help, they need this or that, want this or that, and because there is often a mental deficiency, as a parent you can’t explain to your child that they are being too dependent and needy. They just don’t understand. They live with an autonomous way of thinking: I have a need and I will call my mom to have it fulfilled.
Perhaps this will give you an understanding of the way life feels, as this is the scenario I sometimes feel like I am in:
When life gets challenging, people will say that they could barely ‘keep their head above the water’. Many days I feel like I am treading water in a whirlpool called ‘life’. I have lots of things to do each day and as I complete each task, I do it while keeping afloat and with my head above the water. You have to keep breathing, right? But with a handicapped child, you feel like you are treading water while holding onto him or her. When a parent is young, healthy, and full of energy, the burden is light. I can tread water with one hand and hold onto my child at the same time! At times the water gets rough and the whirlpool spins fast and turbulent. It’s okay, I am strong as I push my child’s head above the water line. Sometimes there are buoys called friends or family who offer to swim with your child so that you can swim easily for a while and regain your strength. But as the years go by, fatigue grows and the muscles are weakened. Even when there is a buoy or a life ring to help hold my child up at times, my child is still tethered to my heart. I am always watching, wondering, and worrying about where they are, if they are okay, and scared that some health crisis is looming, like a shark in the water. When the waters of life get stormy and there are health concerns or other needs, it can be dizzying as the journey gets turbulent. You feel like life is spinning out of control. You can barely swim by yourself and yet you have the loving burden of keeping your child’s head above water. Many times you are so busy keeping them afloat that you, yourself, are drowning. You are tired but you can’t let go. You want so badly to be able to release your child and watch them swim. You are scared to death because you know if you let go, they will drown. You can’t force your child to suddenly learn to swim, so you must keep them afloat. You are finding it harder to swim. You pray for still waters. You fear the change in weather that will stir things up. Life keeps moving and spinning and you keep treading water. There is no end in sight. You want to get out of the water so badly, but there is no way out. Life keeps moving on. There are days I feel so tired and water-logged and my view is the continual swirling dark waters that I try to will and pray into calm submission.
Oh there are periods of calm blue water and sunshine. Those are days of easy swimming. My grasp on my child is not so clutched and we can almost float along. Those days are relished. Those days are appreciated. But my eye is always on the horizon as I hope to recognize if bad weather is approaching. But when the waters have seemed rough for too long, fatigue rules and muscles turn to jelly.
I’ve been treading water for over thirty years. I’m sorry but I’m tired.
But I’ll keep swimming.
Psalm 23:1-3 The Lord is my shepherd, I lack nothing. He makes me lie down in green pastures, he leads me beside quiet waters, he refreshes my soul. He guides me along the right paths for his name’s sake.
ps Please pass this on to any caregivers you know. And please reply if this helped you understand how a caregiver feels or if you are a caregiver – did I touch home with you?