When I typed “caregiving” into the Google search bar the following phrases immediately came up:
Caregiving is difficult
Caregiving is ruining my marriage
Caregiving is a thankless job
Caregiving is killing me
Wow!. More and more families are faced with issues of caregiving and are feeling the physical and emotional drain of it no matter how much you care about and love the person you are trying to help.
Caregiving can be rewarding in surprising ways but it also can be challenging in ways you never imagined.
I come from a large family and I really can’t remember a time when there hasn’t been someone in my family who needed some extra help either because they were elderly, sick or had developmental disabilities. We have a precious adult brother who has Down Syndrome and he has taught us a lot about living life with a giving and open heart. He is the essence of kindness in the face of life’s challenges.
As a child, I remember there was always a relative who needed extra TLC. There was a great aunt who was in a wheelchair, another aunt who had glaucoma, and a sweet wonderful grandmother who periodically stayed at our house as our family, with the help of a day nurse, took the best care of her we could.
All were always welcome at our chaotic rambunctious house and we learned how to help with canes, wheelchairs, bedpans and hospital beds. My siblings and I wanted to help and, depending on our ages, we were given things to do that contributed to helping take care of the person we loved. Taking care of someone is a huge job but I think the big difference in this situation was that none of us had the responsibility of being a primary care giver.
I’m not downplaying what we did for I’m sure through our youth and our joking that we temporarily took our aunts and grandmother’s minds off of how they were feeling or what was happening to them but we didn’t have to make the important decisions about their health care. Given our ages at the time, there was no way we could have been primary care givers which also means we didn’t feel the weight of the responsibility that goes along with being the person in charge of making sure someone is comfortable, clean and healthy.
We had the luxury of knowing we could leave, join our friends and carry on because someone else was in charge of taking care of them. Those people in charge would have been our Mom and Dad.
Many decades later, in the last months of my husband’s life, I moved into that unexpected role of being the primary care giver. I was glad to do it. In no way am I complaining about taking care him. I loved him and would have done anything to help him. But still there were some days that were especially difficult and yes there were days when I felt my patience was completely depleted. I think one of the most difficult parts of caregiving was trying to anticipate his needs and balance those needs with being patient and loving.
At the same time, when the house was quiet, we had some wonderful warm conversations about all sort of things that concern life. Slow conversations where the other person’s thoughts amble and become almost stream of stream of consciousness. Reminiscing and sharing memories. And then there were times when we didn’t talk at all and just held hands. No words were needed. It was incredibly special.
I wanted him to be comfortable; free from pain. I wanted to prevent something bad, such as a fall or worse, from happening. I told myself that I needed to have it all under control when I knew I wasn’t even close to having anything in control. It’s as though you have a mental checklist of “to do” items (medicine, exercises, showering, among other things) and you keep working your way up and down the list, going over and over again until you hit upon something that seems to work as a healthy routine at least for that day.
But you also feel yourself slowly slipping away.
The only way I can explain it is to say that your life is dependent upon the state of health of this person you love and care about and take care of. You feel stuck sometimes taking care of them. Your life has lost its spontaneity. Then you feel guilty because you know they need you and you love them so much and you want them to be healthy again. And round and round it goes.
Imagine if someone you loved, someone you were the caregiver for, was terminally ill for 14 years. A friend sent me this beautifully written story in the March issue of Redbook magazine by Nicola Kraus about the conflicting emotions of caring for an ill person you love and how she is now trying to put it all back together after her mother’s death.
Here’s one thought from the Kraus’s Redbook story which stands out for me: “Magical Thinking will get you only so far. You are not keeping this person alive by not showering, not dating, not parenting, not moving your life forward. Living is not disloyal. It’s your own life contract, which has nothing to do with theirs.”
An amazing thought right?
Here’s to all you wonderful loving exhausted caregivers out there who are keeping it real and doing the best that you can.
It may not be perfect but you’re putting yourself out there and that says a lot about you and your heartfelt help.