When I first told people that my ill father-in-law was coming to live with us the most frequent comment was, “Are you sure you want to do that?”
People didn’t hesitate to tell me how hard it was going to or how concerned they were about what would happen to me if I took on such a demanding role.
They were correct. The seven years I spent as caregiver for Rodger were some of the most difficult in my life. It did take a toll on me. I spent hours praying and crying and second guessing myself as his many illnesses progressed until the inevitable happened and he passed away. Now I write about those experiences as a way to help others who are caring for loved ones at home.
One question I hear now is, “Would you do it again?”
And my response is an unequivocal, “Yes.” The reason I say that is the same one I gave to the people who first questioned my decision to bring him into our home. “I’m setting an example for my children,” I answer, watching them pause to consider their own circumstances down the road.
What I didn’t know at the time was that Rodger would be setting an example for us.
Rodger was diagnosed as paranoid schizophrenic in his twenties. He died on his 83rd birthday. Like most schizophrenics he was very gentle and so introverted he was almost reclusive. Days went by when the only words he spoke were “Good morning,” and “I’m going for a walk.” But every now and then he’d say, “I’m a lucky man,” and that was my cue to settle in and listen. It may have been the umpteenth time I heard a story or it may have been something surprising and new, it didn’t matter. My purpose was to bear witness.
We live in a world where people are consumed by want and infatuated by the manufactured need for the latest clothing, hot car, or designer pet. For people like us, he was an inspiration.
“I always had food when I was hungry and a job when I needed one. I never thought I’d be able to raise a family,” he whispered, tears shining in his dark eyes. “But I was lucky. I was finally able to do it.” And he did it amazingly well on a modest laborer’s salary.
Sometimes he spoke of his life in Italy as young boy. I loved it when he spoke of an idyllic summer day when he came upon a tree lush with fruit. He told me how he searched the ground for just the right stone and threw it, aiming for the best piece, only to have disaster strike when he missed. He described standing transfixed as the stone fell, hitting a passing chicken on the head, killing it instantly. Confused and wondering how to explain a dead chicken to his mother, he placed it on a nearby haystack, hoping a hungry passerby would find it and enjoy a bountiful meal. I hope it happened just that way.
Sometimes he spoke of the day the Gestapo seized their farm and chased him from his home.
“The soldier kept kicking me and telling me to move faster. I don’t know why I had to hurry,” he said. “I was going. No one could stay there and get kicked for very long.” I told him he was lucky the soldier didn’t shoot him.
“You need luck to survive in this world,” he said.
He came to the United States at the age of nineteen. His degree from an Italian university would only take him so far even in this land of opportunity. He decided to enlist in the Army and go to college on the G.I. bill. He was a lucky man.
He fell ill while serving overseas. In the 1950’s, treatment for the mentally ill included shock treatments and straight jackets. Well intentioned experimental therapies often did more harm than good. Many men died, others remained hospitalized forever. He was one of the lucky ones. After thirteen years of advances in medical treatment he left the hospital, got a job, married and raised a family. Modern medicine saved him. Courage, dignity and grace sculpted him into an heroic figure.
Before dementia, Parkinson’s disease, and a bad heart made it impossible, people were used to seeing see us during his daily walk through the neighborhood.
He loved sitting on the bench in the front yard watching the birds. When he was able he insisted on helping out around the house. He brought a special grace to our home. He was a lucky man; he knew what was really important in this world. He was setting an example for his children.
Would I do it again? You bet I would.
It’s an ignorant question quite frankly. Once we have decided, the only question hanging should be….how can I help? Most don’t understand that.
I don’t think it’s really a conscious choice, it’s just seems to happen slowly and before you know it, you’re in full swing.
I’ve taken care of my mom for 4 years she is beyond my care now I have to put her in a home or I might not make it
Most of us don’t have the decision. We just do it.
This is beautiful. Thank you for sharing Rodger’s story… and for taking the time to listen to him before his voice went silent for the last time. I wouldn’t have it any other way either. Hugs.
I agree – sometimes there is no choice. I could never put my mom in a nursing home.
I couldn’t do that to my dad either. Jumped right in with both feet but oh boy… lol
I couldnt put my Mom in a home either.!! I promised to take care of her. And I stood by that promise!! And Loved my Mom more than ever!!
I said I would NEVER put my mother in a facility either , but it got to the place where I could not lift her. I could not risk my eye sight and lifted her at times . My eyes are weak. I had to place her and she had a personal caregiver with her at all times and I traveled 40 miles daily to be with her until dark. She was NEVER left alone. It was a hard 7 plus years because I am an only child with no children or husband. My mother passed away in January and I will live with the fact that she did not pass away at home. When she could talk she told me she did not want to die there but at home. I have prayed for her to forgive me and I know she has and understands all now.
Spouses are the default, whether they like it or not. I hate it, and have been doing it for 13 years. I do have paid help, but mostly, I have fantasies about running away.
My husband has had PD since he was 33. Had the DBS surgery six years ago to stop the head jerking but has not been able to stand alone since. He is now 67. I couldn’t get long term care insurance on him when it became available because he had been diagnosed years before. I’m his sole caregiver. It’s hard to be compassionate when you are tired worried sick and in pain yourself.
So you put one foot in front of the other and try to keep your mind as blank as possible, right?
I did it for a solid 3 years. Mom has been with me now for 20 years. This will be her second month in a Nursing Home and she looks great.
THERE IS JUST NO CHOICE FOR MANY OF US.
Very nice story, he sounds like quite a man with quite a past. Interesting someone married and had children with him, though. He must not have been TOO mentally ill. I wonder if there are levels of paranoid schizophrenia? (I have a relative who lives in a group home today, severely mentally ill, 6′ 5″, 350 pounds at least, can’t even get on a city bus. He will be in that home till he dies, we were so lucky to get him in it. Three meals a day, they see he takes his medications, and clean his room once a month.) God Bless!
if we don’t do it, who will? That question is disturbing and very telling of our culture. Pitiful what we do to our old people in our families. Worries me.
My favorite caregiver post ever. Beautiful. Thank you. Bringing my husband home soon after almost ten months in the hospital. He’s a quadrilegic. Many people think I should not bring him home. I love him too much.
How touching! How honest and yet, culling out the beauty of the experience. I was so encouraged reading this post.