Changing Day Programs

Robert has gone to the same Easter Seals Day Program for the past three years and really enjoyed his time there. Not surprisingly, he made friends with other clients and found his way into the hearts of the staff. 

Robert walking into Easter Seals (2012)

Usually the transport van dropped Robert off at program but I would do so after any doctors’ appointments. When we arrived, I thought I had walked into a slightly different version of a Cheers episode.  Robert would walk in and everyone yelled, “Robert!”

Robert loved it there. 

During much of this time Robert lived at the care facility but the Day Program staff was terrific at keeping me informed of any changes in his health or problems they noticed. They followed protocol and kept the care facility apprised as well but knew that I was an involved caregiver so took the extra time to also communicate with me.

I loved having Robert there.

During the three years at the program, Robert’s health declined and living situation changed. They kept up with all of it.  They called to check on him whenever he was in the hospital. When he was at program, they kept him involved in activities, took him out in the community, treated him with respect and were amused by his jokes. The staff was caring and full of heart. 

A staff member even enlarged copies of word search puzzles to give to Robert – and created a binder we could keep them all in!

That’s how much Robert was loved there. 

This past year has been challenging. Robert’s needs increased to the point of needing a wheelchair.  Putting him into a wheelchair is something I have resisted for years but his case manager at program suggested in June that he use a wheelchair while at program and I agreed with her assessment. He needed it to keep him safe.

Unfortunately, Robert’s mood was also changing rapidly so the terrific staff at Day Program had to deal with Robert’s outbursts and demands. They had to deal with him refusing their help when he needed a change of clothes. They watched him go from a happy, engaged, “excellent” kind of guy to one who could fall asleep while eating lunch, not wanting to participate in activities and, when awake, arguing about sitting in a certain recliner.

Robert would have been happy to have every day be “recliner day” but the staff wanted him to continue to participate in activities and to share the one recliner that seemed to be everyone’s favorite.

During Robert’s most recent hospitalization, his case manager called me to check on him. She hoped he could somehow get back to usual, jovial self.  I kept her up to date on Robert’s condition and new diagnoses even when he was transferred to the Skilled Nursing Facility. 

After several weeks of therapy, Robert was ready to return home! I was anxious to see how he would do at home and slowly transitioned him to his regular routine.  He was discharged mid-week before Labor Day and I thought that gave him plenty of time to get used to being home. I planned to take him to Day Program on the following Tuesday.

After a change in medications as well as intensive physical therapy, Robert was able to use a walker. I thought it best if he used the walker during the short distances he walked around our house but wanted him to stay in the wheelchair during his time at Day Program – just in case. I notified Day Program that Robert would return but it was probably best for him to stay in his wheelchair.

Robert was excited about returning to program to see his friends again.

The Friday before Robert was to return program, I received a message telling me that since Robert would be using a wheelchair he couldn’t come to that Day Program any longer. Apparently, they were already full for non-ambulatory clients and Robert would have to be re-classified if he returned there.

NO! I was frustrated I wasn’t told this was even a possibility and was also panic-stricken: what was I to do with Robert during the day?  I needed to go to work!  

The case manager didn’t have any authority to change the decision so I immediately called the program director. The order had come from her so I knew the only way to resolve this was to talk with her directly.

I explained that Robert was doing so well that he could use his walker. I was just concerned about tripping and whether or not he could use it all day. She told me about their other program that has a lower staff to client ratio. She was going to check to see if they had availability for a non-ambulatory client.

In the meantime, she worked with me. 

We sent Robert back to program using a walker. He stood tall and walked in and was greeted with love and shouts of “Robert!”

He did great for three weeks.  Then he caught a cold and his brain couldn’t deal with both the cold and being able to walk.  His ability to walk fell off a cliff.  Again. 

Back in the wheelchair – there was no other option. Another call to the director is all it took to work out a transfer plan. He could be in the wheelchair at program until the transfer to the new program could take effect.

The transfer process started.  I contacted his Regional Center case worker and we made an appointment to tour the new facility.

Robert, Richard and I met with staff at the new program and were enthusiastically greeted by both staff and clients.  One even came up to Robert, put his hand on his shoulder and said, “You’re my buddy.” 

It was a relief to see staff members that Robert knew.  One woman worked at Robert’s former care facility and remembered him. Another spent time at his other Day Program so knew Robert. A client at the program is also a resident of the facility Robert goes to for respite.

It’s a small world and all of the familiarity and warm welcomes pushed away any doubts I had about the change. 

The transfer came through very quickly and within weeks Robert was having a goodbye party at his “old” Day Program. Robert will miss everyone but it is reassuring to know many of them will see Robert again and he will get to see his friends when the two programs have their combined parties.

I am grateful for the staff at the old Day Program for their love and heart in caring for Robert the past three years. I couldn’t have asked for better care and know that because Robert is going to a different Easter Seals program, he will be in good hands there as well. 

The next post will be about Robert’s first week at the new program!

I feel very fortunate that we found not only one but two wonderful programs but I wonder what others have experienced. Please share your experience with day programs in the comment section.