DIGNITY:  Noun.

1. the state or quality of being worthy,  honored, esteemed or respected.
2. the importance and value that a person has, that makes other people respect them or makes them respect themselves

Along with my desire to give my husband back his independence, I had a second desire for him – to give him back his dignity.

When Arthur was in rehabilitation facilities or hospitals, he had little say about how his care was implemented. If you raise too much of a stink, the hospital staff has their ways of getting even. Arthur had one CNA (Certified Nursing Assistant) who was always friendly when I was visiting. When he left the room one evening, Arthur told me, “He’s mean to me when you’re not here. He doesn’t help me. He sits in the bathroom and plays on his phone.” Wow!  What do you do with that?

In so many ways, Arthur was at the mercy of the staff. He desperately needed them. But he had little or no control over how he was treated or viewed or when anything would happen. He was at the disposal of the staff.  He was limited by his injury and by hospital rules. He was on a schedule of the hospital’s choosing. He couldn’t change himself if he was wet or soiled. He couldn’t get his own food. He was a liability so he couldn’t get out of bed on his own.

 On several occasions, he needed to be changed either because he was wet or soiled. It’s a situation we try to avoid because it can lead to infection and/or broken skin. Even after multiple requests, he was told the staff was busy or on a break. Sometimes they just wandered off. He wasn’t respected as a person.  I understand some facilities are under-staffed. I understand that workers need to eat lunch. I understand that he is one of many patients. It doesn’t make it right. He often felt like he was imposing.

Humble – verb. To destroy the power, independence or prestige of.

This is a man who never wanted to ask for help; who didn’t want to accept help.  A man who was more comfortable being the helper than asking for help. After the accident, he humbled himself enough to ask. And ask again. And again. He had no other choice. He needed to be his own advocate. I wasn’t always there to advocate for him. It was demeaning. It was frustrating. It was sad.

He also had very little privacy. While getting a bath or getting changed because he was soiled, he was uncovered and exposed to whoever walked in. The staff pulled the curtain over but there was a revolving door of changing staff who took care of him daily so he was exposed to many people. He lost his dignity. The staff may be used to seeing patients undressed, but the patient isn’t used to it!

When I asked him about this, he said, “After a while, it didn’t matter. Being covered up didn’t feel important anymore.”

He stopped caring who saw him and who didn’t. In some ways, he gave up and gave in. It was sad for me to watch this once vibrant man become so passive. Yet he needed to in order to survive in these institutionalized facilities.

It was so hard to watch this man who was so energetic, so incredibly fit, running from one thing to another, dashing in and out of the house, mowing the lawn, helping a neighbor, fixing his car.  How must he feel to have not only lost the use of his limbs, but also so much of his dignity? He couldn’t even bathe himself. I wanted to give him some of his dignity back. I wanted to show him, with my actions, that I believed in him. I wanted to give him the opportunities that he was denied while in assisted living, when they were often in a hurry and didn’t have time for him to do things for himself, where his room was not set up for success.

I recently posed a question to a group of people who were either injured or have an illness or disease that causes them to need a wheelchair. They have varying degrees of mobility and self-sufficiency. Some, like Arthur, can do many things but need help with others.

I asked, “Does anyone feel like they’ve lost some of their dignity since their injury/illness? What is your experience?”

Immediately, the responses came in.  

“I have no modesty left. “

“Me too,”

“No modesty left either.”

“I lost mine a long time ago.”

Chris Shepherd says, “I’ve fallen in public. Had accidents. Been not able to do things. I play it off, but many times it hurts real bad. Tomorrow will be better.”

One had a more positive response, “I take it all in stride. Try to not focus on the things I can’t change.”

When Arthur came home after 13 months of institutions, he had no modesty at all. A CNA came in five mornings a week to help him with his daily tasks of bathing, getting on the toilet, cleaning himself. He was home, yet he still didn’t have any privacy or modesty. It was time to let the CNA go so Arthur could have the opportunity to regain his dignity. And both of us could have some privacy!

OK God. I need help. What do I do? I set about returning some of his dignity to him. He had forgotten what normal is. I reminded him.  Covering yourself in front of other people is normal. Closing the door to the bathroom is normal. Wearing pants is normal.

Unless he asks, or it’s an emergency, he takes care of his own bathroom needs. Before he became independent enough to prepare his own meals, he was included him in decisions about food – what time he wants to eat or what foods he wants to eat. He had a voice again.

He finally had choices and options he hadn’t had in over a year. He was used to having aides, asking for help, waiting. Used to having someone shower him, clean his bottom.  It was the beginning of a journey back for him.  He didn’t have to lay back and wait anymore. He could learn to take care of himself. In the beginning, it was scary. He didn’t want to take a shower by himself.  But when he finally did, it was a victory.

Arthur can’t reach the microwave over the stove so we have two microwaves- one at his height. Before I put furniture in our home, I measured the space he would have to navigate around, making sure there was enough room for his wheelchair. The foods he uses are within reach in both the cabinets and the fridge.  These little things show him respect and gives him his dignity back. He deserves that. Everyone does.

 I try to stay out of his disability and his way of doing things. It’s his disability. He deserves the right to handle it however he chooses.

I asked Patti Parnell, “What is the solution? Losing dignity doesn’t seem acceptable to me.”

She replied, “Changing how you define dignity. I lose modesty to let others help me when needed. I cooperate when they help so I continue to stay safe, healthy and live life as I choose.”

Angela DiCicco

The Italian Grandmama