Another Move for Alan

I feel for Alan. His life has been rather complicated with the number of moves he has made since birth. First, he was in the foster care system for several years in his birth state of Connecticut. He was then adopted by Jim in 1983 and moved across country to California. Fortunately, Alan lived with his adoptive family until into young adulthood (I entered the picture as mom in 1985).

Alan and Ben at my wedding.

Jim was Alan’s primary caregiver while living in the family home but Jim was having some health problems. Since Alan was now a young adult and no longer in high school and Jim was struggling to keep up with his care, we decided to move Alan into a terrific group home where his physical, emotional, and social needs were met by a fantastic couple who owned the home. He lived there for several years and did quite well. However, because of the location of the home and some conflicts with the physical structure of the house, Alan (Donald who was also living in the same home) needed to relocate on a short notice. Both returned to Los Altos to live temporarily, which ended up to be several years, with me as their mom/caregiver. For the first time since their adoptions took place, Alan and Donald actually had their own bedrooms.

I might mention that there are different regulations for care facilities in different areas, even in the same city. For example, emergency exits, where to place ramps, screen doors versus no screen doors, sprinkler systems, arrangements of bathrooms, and the list goes on. To make things more ironic, the structural reason why these sons needed move was not something I could offer with the structure of our home either: no sprinkler system. Our house is not a licensed home. We are a family home without set regulations for licensing requirements.

After a couple of years a place for Donald was found. Finding a place for Alan was more difficult because of his specific care needs. With the help of Alan’s Regional Center case manager and the social worker for conservatorship, we were able to move Alan when a bed opened up where Donald lived. Once again Alan and Donald shared a bedroom. In addition to moving to a new home, Alan began attending a new day program. New staff and caregivers all at once. It was a day of mixed feelings for both of us.

I tried my best to demonstrate feeding, physical transfers, administering his medications, communication, and everything else I could think of to make Alan’s life safe and positive. Regardless of how hard I tried, my son who had been healthy with no hospitalizations for more than thirty years had several trips to doctors and visits to hospitals for various reasons the next several months. Some of these incidents I wasn’t even aware of. In the spring of 2019, Alan was admitted yet again to a hospital that resulted with him being in severe septic shock. His life was changed forever.

Happier times with Jen and Alan ice skating

I again became more involved in making decisions about his care and what to do when he was ready to be discharged from the hospital. Cognitively, Alan was still intact, alert and aware of what was happening and making his desires known. He had developed deep, open bedsores while in the hospital and to my knowledge he hadn’t ever had open wounds or sores before in his life. He could barely swallow and had lost a significant amount of weight. It appeared his life expectancy had become less than six months. Of course, he wanted to come home on hospice care and that’s what happened – more than three years ago.

Alan arriving home

Not many people remain on hospice care for that long. Since Alan had become more stable, hospice needed to stop. There was no reason to validate that he required hospice care, according to the hospice agency. His wounds continued to be a problem, no matter how diligently we worked to improve his positioning and dressing changes. Since hospice care would stop, it was necessary to make decisions about Alan’s future.

Vanessa, our conservator representative social worker with Good Shepherd Fund and the San Andreas Regional Center nurse and case manager arranged for a meeting to take place at our home, along with the nurse and social worker from the hospice agency to discuss the level of care that Alan required and how his needs could be met outside of the home. We learned there was an opening in a licensed home not far from us that served adult clients with medical care needs. There was a ton of paperwork to be completed before Alan could even be accepted into the home. It seemed like every time that paperwork was submitted, a new request for something else was made and this continued up to the moment Alan headed out the door of the family home. Yesterday he began a new chapter in his life.

Alan waking up

Alan’s new residence is about a fifteen minutes drive from our house. I had my van loaded with his belongings and the administrator and one caregiver from the home transported Alan in their wheelchair van.

Alan arriving at his new residence

Alan outside front door with Mom and Vanessa, the GSF worker

The home is spacious, clean, organized, accessible, and in a nice neighborhood. One advantage of homes like this more caregivers available. Perhaps Alan will get more attention than what I was able to provide as a single caregiver to many. There is a nice backyard with a patio area to spend time outside in the summer.

Alan has his own room, as he did here. I am hoping they will be flexible in the way his things are set up. For example, angling the bed so he can see the TV better because of the way his head turns to the right. Of course, everyone will need to learn his way of communication and his likes and dislikes for TV programs. Alan, as you know, is a bright and social being with a sense of humor and who likes to be included in activities. My desire for Alan is to continue to be as involved as he can possibly be under the circumstances and events of the past.

Here are some photos of Alan from the last three years.