Alan and Donald returned home as a ‘temporary placement’ from a wonderful care home where they had lived for many years. Temporary for Donald meant a bit shorter time than it did for Alan. Finally, after 8 years of ‘temporarily’ living with the family, an opening was available and we decided to take the opportunity for Alan to move into a care home. The best part, it is the same home where Donald lives and they are together again and even share a large bedroom.
Alan and his brother Donald in the living room of his new residence
Alan and I have struggled together over the years. He had strongly bonded with his dad when I came into the picture. Therefore, for many years I sat along the sidelines while his dad was the primary caregiver. Things changed. His dad and I separated and Alan began to spend weekdays with me and weekends with his dad. Finally, Alan and I had the opportunity to actually get to know each other better and form a stronger bond. Parenting expectations and caregiver styles were different between his dad and me. There was a good deal of adjustment for Alan to make but he is bright and was capable of doing so. After living in a group home for several years, Alan moved back home with me fulltime but still with the goal of finding another place to live. One day an email came in from his social worker informing me of an opening in a care home and asking if I would consider Alan moving there. The strange thing is that Alan knew about this before I had any information and he seemed ready to go.
Alan’s last morning at home before moving to his new residence
Alan loading into the bus – happy to be moving on
We didn’t have a whole lot of time to prepare for this move to claim the opening at the care home. Alan is not a person you can just say to someone – “Here he is. Good luck.” Wipe your hands off and leave. There is a great deal to explain about his care since his needs are close to the maximum of what most individuals with severe physical challenges require. I spent a lot of time recording things – how to prepare his food, how to lift, how to put him in his wheelchair, how to feed him solids and give him liquids, how to give him his medications, and the list goes on. I printed this out and passed it along to his new caregivers. Some staff from the care home came to the house where I could actually demonstrate all of the above. Someone videoed it on their phone to share with other staff who were not able to come here for this beginning training session. When moving day came, I have to admit I was feeling nervous but also excited for Alan.
Things seemed to be going well from information I had received from staff but all too soon another email came in saying he had been taken to the emergency room and admitted to the hospital. WHAT? How could that be? The first thing I wanted to do was drive there and see what was going on but I was tied up at the house with other sons and I also wanted to avoid going to medical facilities and being exposed to the flu during this bad flu season. So, emails and text messages began to go back and forth between the care home staff and myself and I managed to avoid stepping into the hospital and the primary care physician’s appointment.
I felt as if I had let Alan down and was upset with the staff for these problems. How could all of this happen since the last 30+ years of Alan’s life the only time he had been hospitalized was for orthopedic surgery, if I remembered correctly? At any rate, he healed, was discharged, and went back to the care home and his day program.
Too soon another email came that he had once again been taken to the emergency room and admitted to another hospital for a different problem. Twice in less than four months after moving out. My heart sank and I felt so helpless for a while. However, I did not avoid the hospital this time but went to check on him, to speak with medical staff, and advocate for his needs. I also alerted the medical team Alan’s desires for his care that were written in his Advance Health Care Directive. I asked the care home to bring his wheelchair into the hospital so I could get him off the bed and show them the proper positioning to feed Alan. Things improved quickly and he was discharged back to the care home.
Alan wanted to come back to the house. I understood his fears but I also encouraged him to give it another try. I had the opportunity to speak with the owner of the care home with Alan present. I felt better after our discussion and hopefully changes can be made to make the situation better for everyone. I learned there were some significant changes made in Alan’s diet, many foods that Alan requested but not foods he frequently consumed when living with his family, could have caused some of the problems of the first hospitalization. The issues concerning the second hospitalization are still not clear but appear to be related to how Alan is being fed. Someone will need to go to the day program and review feeding techniques with the staff.
As a parent, I sometimes forget that things I do naturally and in a routine way are not something others would do. I shouldn’t expect others to step in and do things the way I would do. I can give suggestions on how to position someone on his bed, for example, but not to expect there will be follow through in the exact same way I do. Most of how I care for my sons developed through trial and error until a solution was found that was the best for each of us. This is not something that happens overnight and honestly I completely had forgotten how long it takes to learn about each individual.
On top of this, I learned that Alan cried every time my name was mentioned (I was not aware of this) and was stressed. This could have contributed to the medical emergencies. There was another big change about this same time and that was beginning a new day program. Although things were reviewed with some staff, perhaps it was too much information to process at one time, or different staff members are assigned to assist Alan daily.
As I write this, there have not been any more medical emergencies and I pray there will not be more.
Alan waiting for his ride to the day program
After the day program Alan is dropped off at his new residence
