Shel Silverstein is one of my favorite poets. My kids all read his poems when they were little. This is one of his poems that I wanted to share because it is now part of my life with my dad.
The Little Boy and Old Man
Said the little boy, Sometimes I drop my spoon. Said the little old man, I do that too.
The little boy whispered, I wet my pants. I do too, laughed the old man.
Said the little boy, I often cry. The old man nodded, So do I.
But worst of all, said the boy, it seems Grown-ups don’t pay attention to me. And he felt the warmth of a wrinkled old hand. I know what you mean, said the little old man.
Recently I crossed over from being a daughter to being a parent for my father. Some changes in your life, tear your heart into tiny pieces. 22 years ago, my mom went on to her next adventure. She passed away at 56 yrs old from cancer. I stayed with her and took care of her for the last three months of her life. My aunt and my mom’s best friend stayed with me as she needed around the clock care. With them by my side, while I had hard moments, it wasn’t traumatic. I miss her so much with each new family event. My kids graduating high school. college, marriages, and of course grandchildren and now great-grandchildren. She missed it all.
It was a family understanding that when my dad retired from work that he would move in with us. And because he had poor heart health, having a triple bypass, he actually retired a little early with disability and came to live with us. At first, he had a motorhome that he lived in, so he could keep his independence. We had a motorhome pad, with electricity hookups and everything. Then came the day he had to move inside because his health was deteriorating. Then we purchased a hospital bed because he was having problems breathing at night, with a lot of coughing and this would allow him to raise it up enough that he could comfortably sleep. Then more ups and downs. He acquired a walker because he couldn’t walk more than a few steps before he was out of breath. Then back and forth to hospitals, ER’s, tests and more tests. Changes of medication when they damaged his kidneys. Changes of medications to help his heart failures.
My dad has a phobia around hospitals. An intense fear. He refuses to go, wanting to stabilize himself with drugs at home. So that is very trying as it usually means intense discussions with both me and his cardiac specialists. The drugs have started causing kidney damage and they have to dial back the dosage. I feel horrible that he becomes defeated. He sits in his chair and watches TV all day and I know he has feelings of depression and being defeated by his body. Sometimes I feel like the worst daughter in the world, as I crossed over into being his parent. I am his advocate when he doesn’t or just can’t understand what is happening and why.
There is a moral task of caregiving, and that involves just being there, being with that person and being committed. When there is nothing that can be done, we have to be able to say, “Look, I’m with you in this experience. Right through to the end of it.
Dr. Arthur Kleinman.
Why do I do this? About 52 years ago, my dad married my mom. She had six little girls, all eighteen months apart with a set of twins. My dad has a lot of faults, like all of us. But he also has some amazing qualities. One is that when they got married, we were his daughters. Not his step-daughters. His daughters. Not once in 50 years has the word “step” exited his mouth. I think that many who read this will not understand how important that is to a child. For me, putting the word “step” before me, makes me less than his own child. I know how lucky we were that we were never stepchildren. When my mom died, 22 years ago, we were still his daughters. No words can express this kind of love. Believe me, if you met some of my sisters, you would understand how amazing it is, that he still calls them his daughters – lol.
Of all the lessons I’ve learned through my years of caregiving, the most important is to keep the love connection going. Just tell them that you love them again and again and again. You will never say it too much, ever.
It is scary to cross this transition from daughter to parent. It was different from my mom, as I never felt I became her parent, I remained in caregiving mode. It is scary to see that in the near future, he will go on to his next great adventure, leaving all of us behind him. We are both scared right now. What happens when we let our fears get ahold of our mouths? We shout we get angry, we say hurtful things. But it is just us being scared. Caregiving is hard, but it is also so rewarding. I can remember when I was taking care of my mom, that some of my sisters were absent because it was too hard to watch the lung cancer take away her ability to care for herself. I learned what the true meaning of words like grace, dignity, love, sacrifice really were deep under the surface of the meanings we usually give them. I am again reminded of it now every day.
To care for those who once cared for us is one of the highest honors.
I wanted to share my story because I know that many of you are doing the same as I am. Day by day watching a loved one fade away. Sometimes with a fight and sometimes with a whimper. It is hard to watch, and harder to experience it happening to oneself. I wanted to say how while all of our experiences are different because of the people involved and other circumstances, I know how hard this is. I know how fulfilling it is one moment and utterly draining the next. But this is still a gift. A gift of grace, love, and all the other virtues.
Caregiving often calls us to lean into love we didn’t know was even possible.
You are not alone, even when it feels like it. If you feel overwhelmed, please join a caregiver group, whether online or up front and personal. It helps to share what is going on and they can help you with getting assistance when it is needed. Believe me, it is hard to find help when you don’t even know where to start and what is available. Even the strongest person can have the weakest day of their life and having access to someone who knows and understands what is happening is priceless.
Remember the power of your angels. Remember to be guided by love and take strength in the good memories, when those you care for are having a bad day and giving you waking nightmares. And remember the grace of how those things we can’t change, can change us.
When we are in a state of severe loss, of pain and grief and a darkness of the soul – that is when life is at its hardest to bear. But if we just take a deep breath, followed by more deep breaths we can walk into the middle of the chaos. It’s messy in the middle, but in the middle, we have the space to start working through the story of our loss. And as we walk through the story, we eventually reach the end. The end is the place of new beginnings. Our life has been forever changed by our tragedy. We must remember in this space of pain, grief, and loss that the new beginning will be waiting for us.
The sun will shine. The stars will shine brightly. New people will come into our lives. We can see the light at the end of the tunnel if we only will open once again to breathe in the love.