He lay there on the floor, his wheelchair behind him. His face was red with exertion and his body contorted from the disease that ravaged his body. We didn’t know how long he’d been lying there. We had been shopping and thought that leaving him alone would be ok.
He didn’t want to call interrupt us, so he lay there like that for almost 4 hours, we later learned. As the EMT’s rolled the stretcher into the condo, I knew it was going to be another long night at the hospital, our home away from home.
I didn’t care about the long hours, it was what this would do to him that made the tears sting behind my lids and make me bite my lip to keep them from spilling over. I was rarely successful at that. I climbed into the back of the ambulance, all the important papers and medications in hand, as my mum made her way to her car. I refused to ever let him ride alone, he was my Dad and my hero, but I couldn’t always help but think he got scared sometimes too.
My father has Multiple Sclerosis, a neurological disease that effects the myelin sheath surrounding the nerve endings and makes it difficult for a person to move or react to the synapses that happen within the body. He was diagnosed 15 years ago, but it wasn’t until 2003 that we really started to see the toll the disease would take on him, his body, and our entire family.
It started slowly, first he couldn’t walk long distances, then he had to use a cane and eventually, a wheelchair. None of that ever stopped him from working or wanting to help out around the house. When he lost the use of the right side of his body, he just learned how to do everything with the left. My parents decided to sell my childhood home, the one they had built right after I was born and lived in my entire life, to move to Boston to be closer to the best doctors and to move into a new building so my Dad could maneuver with his wheelchair. That was the first big change.
Then he had to give up driving. Then he had to use his wheelchair exclusively to get around. He never wavered though, his resolve stayed strong. But I watched as his relationship with my Mum broke down. It was so hard for her to care for him. She loved him with all her might, but she was tired and being 100 pounds it was impossible for her to physically help him much. But they soldiered on. They had moved 4 times in 7 years because they kept finding places that would work best for him in terms of space and mobility. Every time he fell we had to call 911 to send the EMTs to pick him up, if my mum and I couldn’t do it. We spent nights awake, listening for him to make sure he didn’t fall when he got up to go to the bathroom.
I moved home to help them, I wanted to be the hero, to put my family back together again, but things just got worse. My mum and dad started to fight. They talked about divorce. Divorce? Not my family is what I always thought. Who would take care of my dad?? Then the inevitable happened…my Dad was hospitalized and my mum decided to take a year off of work to care for him. Their relationship got worse. And later that year, she couldn’t take care of him any longer and we had to place him in a nursing home.
He’s been there for 10 months now. I should mention he’s 58 years old. He turned 58 in March. My mum still loves him and visits him almost everyday, they’re still married (32 years). He still loves her. But he’s not the same. His spirit has been dimmed. I wish this story had a happy ending, but it doesn’t.
I wish every day that my Dad had cancer, that way he wouldn’t have to suffer like this. Not that people who have cancer don’t suffer, they do. But at least they know their destiny. Its death or they get to live their lives again. My Dad doesn’t get that. He sits in limbo forever.
My family continues to suffer immensely from this. We’ve been torn apart and ripped to shreds, our hope shattered. There’s nothing left for us except to stay strong and try to find a new way to infuse life into his existence. It breaks my heart to know that my parents will never dance again, he’ll never be able to walk me down the aisle, to care for my mother the way she’s cared for him, to take care of us the way he always did.
Most days, I get a lump in my throat and tears in my eyes as I think of him in that nursing home, hoping against hope that he could find a way out. He makes the most of his days by reading or watching the news, he’s always trying to better himself, but I know it kills him.
He’s lonely. He’s angry. He’s sad. He’s helpless. And he may have to live this existence forever. I don’t know that answer, I don’t know what will happen. I do know that he dies a little bit every day and I’m so afraid for the day that he’s here, but really gone.
8 Comments
Hmmmm…. I am tremendously sorry for what your Dad, and you, are going through. Truly I am.
But having watched both my Mother and Father die from cancer, I do have to say wishing your Father had that disease throws me for a loop.
At least your Father is alive. Sure, his quality of life is suffering, but until you’ve watched someone you love waste away from cancer you don’t know suffering.
My Mother had both breasts removed, and went through chemo and radiation multiple times. She fought for 11 years before losing the battle.
My Father went much faster. It only took 6 months for the brain tumor to first cripple, then kill him.
And you wish your Father had cancer?
Give your Dad a hug for me, and tell him I hope he feels better.
At least you can hug your Dad…
Perhaps the lesson is that none of us can truly put a price on suffering or gauge one as more harrowing than another. Let’s hug the people we still have with us and live for the one’s we don’t.
There are lots of people with cancer who are also in limbo. It does not always go away the first time it goes into remission, if it does…you are left wondering all the time if you will live 3 years or 30. Then there is the slow-growing cancer. It took my dad more than 15 years to succumb. It was very stressful watching him decline, but not knowing why for the first 10 years. I think I knew inside, though.
I feel for you because I have been there, but want you to know that some cancer looks just like what you and your dad experienced. My dad’s lung cancer spread to his brain before we know he had cancer at all. There were times he passed out while driving, then his license was revoked and he could not longer work. Then the seizures and then trouble coming up with words, then confusion and hallucinations.
In any case, it is so hard to watch a strong dad become weak as a child.
Anna,
It must be pretty devastating to watch your dad suffer so horribly, for an indefinite amount of time, and with no hope for a cure.
Thoughts like these are difficult to put into words, and nearly impossible to understand by those not in your shoes. I can’t imagine. Thanks for having the courage to share a glimpse into what it’s like.
Keep doing what you’re doing — “infusing life,” as you put it. Such things keep human dignity intact when the outer shell fails.
No one can understand what it is like to be in someone else’s shoes and the best we can do is listen to each other’s stories and offer our support.
Anna – I’m proud of you for sharing your family’s story, your thoughts and your perspective. It is never easy to open yourself up to strangers, the vulnerability of the situation and fear of the “Leave a Reply,” but it is stories like yours that help ground us and understand that other people suffer from situations different than our own.
Keep sharing your story. Hang onto your memories and stay strong.
I am sorry your family has had to live through this. How heartbreaking. May he find some peace and happiness. 58 is so very young!
My mother died from breast cancer at the age of 50. She was diagnosed with it at 33 while trying to breastfeed my younger brother. She stayed in limbo between remission, two mastectomies and debilitating pain for 17 more years. Cancer sucks. MS sucks. Sickness and disease suck. I’m sorry your dag is going through such pain.
I’ve lost both parents and two siblings to cancer yet I completely understand what you are saying here. Your perception is that people with cancer either live or die but are not thrown into your father’s (and family’s) painful limbo. While the perception is not 100% accurate, the message you are communicating comes across loud and clear.
Though my empathy for you and your family is wholly inadequate, it is all I can offer. My heart goes out to you all.