The following post has been published with permission of the author, a global friend of mine living with a diagnosis of younger onset dementia. Her experience resonated so much with me I asked her if I could publish it here. I suspect the staff working in aged care are so accustomed to the smell of urine, they have forgotten how distasteful it is. My father in law never got used to it in all his time living in residential aged care… If you work in aged care and are reading this, please read my comments at the bottom.
The Long Hallway
By Mary Beth Wighton, Person with Dementia, May 31st, 2013
“The smell of urine has not left me.
Yesterday, Dawn made arrangements for us to visit a long-term care facility. At 2:00 p.m. we arrived at a nice looking building. I sat on an outside bench trying to absorb what we were about to do. We were here to have a tour looking to access if this could be a suitable place for me to one day live at.
It started last week, when my case worker from CCAC gave me the necessary paperwork to fill out for submitting my preferences for long-term care. Having Frontotemporal Lobe Dementia (FTD), I will eventually require a great deal of care. It is our hope that I will always remain in our home. We will hire necessary workers to assist Dawn. Our home will be modified to accommodate my changing needs: bathroom renovations, wheelchair ramp, stair lift, etc.
However, it is also important for us to have a “plan b.” If I do require more care than is manageable at home, I must have my ducks-in-a-row. This means, having my name on a waiting list for up to three long-term care facilities. The search has begun.
Yesterday, marked the first visit of a potential home. From the exterior, the building seemed quite nice. Lots of trees, flowers and it was well kept. Check mark.
We were greeted by staff members who were quite friendly yet professional. Check mark. Our tour began. As we sat in a room listening to all the wonderful things this home offered, I was distracted by some grunting noises in the hall. A woman in a wheelchair was looking at us. I smiled at her and tried to refocus.
The intake worker, spoke to Dawn and me. I was not dismissed as having no value to add to the conversation. Check mark.
I communicated the importance of living a life of dignity and embracing each day. She agreed. Check mark.
We began to look at the different kinds of rooms which are available. Depending on what you can afford, there are single, double and four people rooms. There is a large difference in each kind of room.
Hmm. I did not know how to evaluate my choices. This tour was becoming harder to understand and make a decision. No check mark and no x. I would have to come back to this and mull over the possibilities.
We turned into another hallway. Immediately, my eyes stung and I was overcome with the smell of urine. I stopped. I interrupted our tour guide. “To be blunt, this smells like urine.” I informed her. She seemed surprised. She paused for a moment and then said, it depends on the time of the day.
I’m not sure what that meant, nor did I really care. Her talking began to fade away in the distance as I continued to take in the horrible smell. This is terrible, I thought. This is caused by more than one person. For me to smell it in the hallway, means there is a lot of urine. I was horrified.
It depends on the time of day. Really? What does the time of day have to do with anything? How can a person live with dignity in this stench? I would NEVER live here. What happened to the comment about dignity?
I stopped listening to our tour guide. I went through the rest of the building so I could compare it to others.
As we walked down another hallway, the lady in the wheelchair, who I saw earlier, pointed at me. She motioned for me to come to her. I did and put my hand on hers and smiled. She took my hand and brought it to her dry mouth and softly kissed my hand. I looked into her eyes and told her thank you. I had a desire to sit down beside her and talk with her. Instead, she gave me another soft kiss. It was then time for me to go.
I was told that she never does that. I wonder why I was singled out? When she looked into my eyes, did she know how sad I was? Did my tears, that were starting to build, give me away? Did she have a room in the urine stench hallway? I can only wonder.
As I closed the building door behind me, I thought to myself, I will never be back here again. But unfortunately, the smell of urine in that hallway will never leave me. On to the next long-care facility.”
Mary Beth Wighton © 2013
Note from Kate: there is a product called Bag-of-Rocks which used to be available in Australia, which were brilliant for absorbing the smell of urine, excrement and body odour. You can now purchase the Bag-of Rocks from Wilcore Health on 03 9576 1161, and Mary Beth, you should do some research in your neck of the world to see if you can find them! When the time comes, you might have to insist the facility purchase them.
When I was selling them, I visited a men’s facility in Sydney, where the smell was so strong it almost knocked me over every time I walked in there. I left the facility a number of samples, and a month later they invested in enough for every room. The manager reported what had happened three months later – the men started getting regular visitors again!
In my last sales position, I visited about 80% of the facilities in South Australia, and found a significant number are also tainted by the regular smell of urine. It is amazing what one small product (or act) can do to transform the lives of many, and how the awful and constant smell of urine can so negatively affect the lives of those very same people.