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The Search Continues

March 12, 2015

By Mary Beth Wighton
This past May, Dawn and I began our search for finding three possible long-term care facilities for me.To remind you, it is our hope that I will always remain at home, so this is putting a “plan b” together – just in case.

It is discouraging in that I have yet to hear of anyone who has later stage Frontotemporal Lobe Dementia (FTD), live at home until the end. In particular, bvFTD, the kind I have, it is very difficult for the carer to manage the challenging symptoms and possible aggressiveness. CCAC is waiting for me to return the paperwork listing up to three facilities. Due to some facilities that have up to a five year waiting list, it is important I submit my paperwork in a timely fashion. That basically means – now.

As we drove to my second long-term care facility, I tried to be positive. The first facility we toured had an incredible urine stench in its one hallway. I tried to push that memory way back in my brain. I know they can't all be like that.

I could feel myself getting anxious as we drove up to a small, modern looking building. I took a few minutes to glance over the exterior of the building. It seemed nice enough – some well-kept gardens surrounded the building. Check mark.

I took a deep breath and entered into the building. The entrance had a number of people in wheel chairs sitting in the hallway. Some people were asleep, while others just sat there motionless. It threw me off. I wondered why they were there.

There was a small front desk, but nobody was there to help us. Hmm. Dawn stopped a nurse and told her we had an appointment to be shown the facility. The nurse quickly determined the individual we were to see was not yet at work. She checked the schedule and he was scheduled to be there. She called him at home and was told he was still at home but would be there soon. She added his home was just down the street so it wouldn't take him long. Hmm.

At this point, I asked if someone else was available and told that the other two people who could do that, also were not at work at this time.

The nurse brought us down to a nice room which had a fireplace, some good comfy chairs, puzzle boards, and pictures of past residents. I wondered why the people sitting in the hallway were not in this room. It was just Dawn and I and one other resident.

We waited. The room's quietness soon became deafening to me. I started to get agitated and restless. We waited some more.

I could not understand why the individual was not even at work. We had a 11:00 appointment confirmed. We did not receive a telephone call saying he would be late. Thoughts ran through my head. Is this the way this facility is run - show up at work anytime you want? It is O. K. to make people wait for you, even when you have an appointment? How does this lack of professionalism and lack of respect translate into taking excellent care of the residents? Hmm.

We had enough. We retreated the way we came in and stopped the same nurse. She looked embarrassed and apologized for her manager not being there. From the way she looked, I had a feeling this was not the first time this manager had been late for an appointment. We told her it was not her fault. We asked her to inform her manager of our disappointment and we would not be back. As we headed back to our car, I noticed a man heading into the front entrance. I asked him his name. Sure enough, he was the person who was suppose to show us the facility 25 minutes ago.

To my surprise, he did not apologize and told us he had a personal delivery at his home. He added that he could now show us the facility.

I told him that I was not interested. He obviously did not respect us or our time. He failed to take any accountability and seemed surprised that I was upset. He obviously was not getting it. He asked me why I would be nervous to see the facility. Dawn came to my aid and reminded him of the lengthy conversion they had a few days ago. Not only was he late, but he obviously had not reviewed his notes stating that a woman of 46 years old was looking for a residence for herself.

As he stood there looking at us with his mouth open, we drove away.

I don't understand it. For anyone to view a long-term care facility is nerve racking. In particular, if it is you who is the possible resident. There are so many thoughts flying around in your brain. You are anxious and nervous. To be met with such incredulous disrespect is frankly disheartening.

The search continues.