Monday, May 27, 2013

What I learned From New Home

Robert has lived with me and my husband, full-time, for two months now.  Before that, he lived with us on the weekends and lived at New Home through the week (unless he was sick or if we had to cut the weekends short because of the 73 day rule).

I made no secret about the fact I had some troubles with New Home and the facility before New Home.  I expect the best possible care for Robert whether he’s living in a facility or living with me.  Sometimes it just takes a while to get the facilities on board.

Playing cards at New Home
It’s easier to see what I’ve learned from these experiences with New Home and Old Home now that Robert is no longer living there.  (Now that I’m no longer on red-alert making sure he’s well cared for.)

I don’t think having Robert live with us is giving up on facilities because I think there are plenty of wonderful, caring facilities that Robert would be perfectly happy in and I would be happy with.  Finding those facilities will be priority number one if Robert ever gets to the point where my husband and I can’t give Robert the best possible care. 

In the meantime, I have gained some insight into these facilities and have to give credit where due.  Yes, you heard it here first - I am admitting that I learned a few things from New Home. Not that it was easy coming to this realization . . .

1.  Client care.  The people who truly care for the clients are the staff workers.  The people who work at the bottom of the pay scale but whose hearts are huge.  At Old Home, the person who cared for Robert the best was the woman who did his laundry.  She made sure his sheets were changed and cleaned daily and washed and returned his clothes to him within the same day.  She took me aside when I moved him out of Old Home and explained that he was extremely incontinent every night and the New Home should make sure he was kept clean and dry.  The real concern she showed for Robert touched my heart and made me wish she could follow him to every care facility he ever had to live in.  New Home had their own caring staff, many of whom were young adults supporting themselves through college.  They laughed at Robert’s silly jokes or took time to play a game or two of cards with him. 

When touring a facility to see if it’s the best fit, pay attention to the floor staff.  Do they engage with the residents or just do their work and watch television?  Do they seem at ease having conversations with a disabled or elderly client or are they uncomfortable?  

2.   Facilities need help being comfortable with family involvement.  Each facility is different, of course but there are varying degrees of comfort with family involvement.  Old Home was used to families visiting or taking the residents out for the day.  New Home had multi-layers of rules and regulations as far as visiting at the home or taking Robert out for the day or an overnight visit. The first time I took Robert out for the day, there was a great deal of commotion and chaos when we returned because they were not used to the clients leaving with family.  I felt like a criminal for taking Robert out to dinner.  However, I was not about to be intimidated into not visiting so learned all the rules (call House Manager and Supervisor ahead of time; sign the sign-in sheet; have an estimated time of return, etc.) and followed them.  After a while, the staff got used to me and relaxed the rules a bit.  Apparently, I wasn’t quite the scofflaw they thought I was (although, after Robert had lived there for almost two years, one new staff member asked for my identification before she’d let me into the house. That stung a little.). 

3.  Supply companies and program services.  The staff and even supervisors at both Old Home and New Home were terrific at pointing me in the right direction for services and programs for Robert.  It was at the suggestion of the Director of Old Home that I enroll Robert in the local Regional Center which opened up all kinds of services for him.  Because of this, Robert became eligible for a Day Program for other disabled adults and transportation services.  When the Regional Center suggested a few Day Programs for me to choose from, the staff at New Home provided insight into the different programs and which one would be a good fit for Robert.   Their guidance proved extremely helpful and accurate and Robert has been very happy at his Day Program for three years! 

New Home also provided me with the names of supply companies to use when I moved Robert into our home so I could continue to get his incontinent supplies.  This was extremely helpful and saved me research time as well as time spent setting up a new account. 

4.  They want to do the right thing.  Even though I had difficulty with the administrators in both facilities, I do think these people wanted to do the right thing for the clients.  In fact, I saw change in both facilities over time and, sometimes, after Robert left.  Both are corporations and must watch out for the bottom line which affects many, many decisions (staffing ratios, turnover, meal selection, to name a few).  It’s a difficult balance between solid client care and profits.  Administrators are juggling both goals and it oftentimes looks as if they lose sight of the health and well-being of the clients.  I can’t blame them their predicament.  I do blame the corporate atmosphere and, if Robert ever needs another facility, will look into privately owned homes.

5.  Communication.  I can’t stress how important communication is with these facilities.  When first placing Robert, I really underestimated how difficult it would be to communicate with Old and New Home.  Now I understand they have several residents of varying degrees of disability, health concerns and family (or not) involvement and may not be able to give Robert their full attention and me full reports on Robert.  This was something I assumed would be easy going in but soon realized there were always “behind the scenes” reasons for their behavior and lack of communication.  It was really difficult to maintain good communication because when I asked for seizure logs, for instance, I was always promised them.  And then they wouldn’t show up, even after repeatedly asking and explaining their importance.  If we ever need a facility again, I will need to come up with a much better plan to ensure great communication from the outset. 

I do appreciate both Old and New Home for taking care of Robert before we were able to do so.  I think they both provided Robert with very positive experiences (remember Robert playing Bingo every day and hoarding his Milky Way “prizes?”) 

These experiences have helped us get to where we are today – Robert living with us, trying to get used to dogs who are fascinated by him and love to invade his personal space (one of them, anyway) and all of us trying to establish new routines.

For this, I am grateful for the lessons I’ve learned from New Home (and Old Home) and for helping us get to the place where we all are today: Home.

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