Some of my happiest years working at CLO was the time that I worked in the Individualized Living Program, which was their first foray into having people live in their own apartments with support people who helped them out throughout the day. I loved all of the guys that I worked with there, and have maintained relationships with them as much as possible through the years.
One of the guys, David, was a fussy old man (he always seemed older than he was). He was meticulous, and slow, and had a very routine way of doing absolutely everything. Once in a while, however, he'd pick up on a phrase or joke and repeat it, and it was always funnier coming from his mouth than from anyone else's. I wasn't always as patient as I should have been with David. I remember one night trying to coax him to hurry and get out of the van, as it was very cold. For years after that, he would repeat my exact words when told to hurry out of the van... "Hurry up, I'm freezing my ass off."
He was amazing at retaining bits of knowledge and being able to identify pieces of classical music and their composers, state capitols, state mottoes, state birds... He was born in 1934, but unlike so many folks born in that time period, he was not sent away to an institution. He lived at home with his mother until she grew too old to properly care for him, and therefore he had many advantages that people who spent significant amounts of time in institutions did not. He had good table manners, a particularly dapper way of dressing, an interest in reading the Kansas City Star (particularly the automotive section) and loved many types of music. He and I used to warble Cole Porter songs to each other as I helped him get ready for bed at night. He loved to go to concerts, plays, and out for meals. He loved visiting his mother in Tonganoxie, and remembered exactly who lived in what house from years before. He loved his roommates, and they took great pride in "helping him" and taking care of him.
Because of my illness, I hadn't been around to spend much time with him in the past year, as he slid downhill in functioning due to advanced Parkinson's disease.
On Friday we heard that he was being admitted to the hospital, and that it looked as if his last days were upon us. I went to the hospital on Friday evening to see him. He was pretty out of it, but was taking apple juice and Sprite on a mouth sponge. The state has no provisions for a person with developmental disabilities to have any sort of additional care when they are in the hospital. Knowing first hand how much advocacy can be required when you're in the hospital, I felt bad that his main direct care staff and the agency director all looked wiped out and had been dealing all day with getting him admitted and making sure he'd be taken care of. Still, when you can't even speak to make your wishes known or to tell someone you are in pain, you just never know how the quality of care from the medical personnel will be. Most of them haven't had a whole lot of exposure to people with intellectual disabilities who can't push the button or tell you what they need.
I asked if I could be of help if I stayed overnight with him on Friday night, and his CLO staff took me up on it, knowing that I would look after him and would also call all of the appropriate people in the event that his status changed at all.
It ended up being wonderful opportunity to spend time with David. I brought a radio, my Cole Porter CD, some lavender lotion to rub on his head, back, and hands, and just had the opportunity to talk to him and tell him how much we all loved him and how many smiles he had brought to so many people over the years. I slept (for an hour or so) in a chair next to his bed, with my pillow next to his, and held his hand. I went back on Saturday night and did the same thing. There was no expectation of doing anything for him except to love him and remind the nurses when he seemed uncomfortable or in pain. During the day many people were stopping by to see him, to say goodbye, and to share memories with each other. The agency director here in Lawrence, Jamie, was the other main person who spent many hours there all weekend, she's been with CLO forever and loved David just like all of his staff loved him.
I went home on Saturday morning around 7:30 and went to sleep. The person who had relieved me, Jamie, called shortly after 10 to tell me it was time to come back to the hospital, and I called Scott. I arrived at the hospital at the same time as all of his staff and his guardian was arriving... everyone had been called. We gathered around David, shared memories and funny stories as David's breath grew more and more shallow. Around 12:30, David opened his eyes wide and looked out into the distance very intently, and then peacefully left us. I was holding his hand, another person was stroking his head and telling him goodbye, someone else was rubbing his feet, and another person was telling him it was okay to go and see his mom.
I felt incredibly priveleged to have had the opportunity at the last minute to spend that time with him, and to help make the last couple of days as comfortable as possible. We were all lucky to have known David, and to have worked with him throughout the years. He touched everyone he came into contact with in a positive way, and I like to believe that he led a good and happy life...and he was loved.