Preparation for Respite Weekend

Respite Weekend was a definite success but getting here was no easy feat!

Even though we are officially “entitled” to twelve respite nights per year from Robert’s social services agency, we have not even come close to taking advantage of that.  

Dropping Robert at respite. 

It isn’t even all our fault.  The social worker flat out told us that, yes, we are “entitled” to twelve nights (and I put that word in quotes because I pretty much hate the concept of being entitled to anything but that’s what they call it).  However, there are fewer and fewer care homes that are open to taking clients for respite.  These facilities make their money on permanent residents so the availability for a few respite days in a dwindling field of options is slim. 

We lucked out, though.  We were flexible with our weekend and it only took six weeks to find a facility that was able to care for Robert’s growing needs. 

Step one, complete.

Time to visit the facility. This usually would include all three of us but on the day it was set up, Robert was going into a tailspin from his new medication.  So, party of one (me) visited the facility. The staff was nice; the owner answered all my questions; it was quiet and clean. Robert would even have his own room which was an added bonus.

Step two, complete.

Next, there was the paperwork. No problem!  I can slay paperwork with two hands tied behind my back (yep, that’s me typing with my nose). 

Paperwork for the social services agency and paperwork for the care facility – done and done.

Step three, complete.

Time to send the care facility my “Getting to know Robert” document and his one page summary sheet.  Both of which are meant to avoid any medication or behavior confusion or problems. Information such as “He prefers to be called Robert and will remind you of that if he is called anything else” and “Robert loves to brush his hair and shave and would do so several times a day if given a chance” as well as a breakdown of our usual schedule and medication dispense times are included. 

(Updating this document was actually surprisingly sad. The last time we had taken Robert for respite was May 2014 when we repainted our house before selling it. Robert was still using a walker full-time and even dressed himself with just a little assistance from me. He now uses a wheelchair, only using the walker for short distances and he needs almost complete assistance dressing. The decline is much more dramatic than I would have thought if I hadn’t read it myself!) 

Unintentionally, these documents raised more questions for the facility than they answered. He uses oxygen at night which caused all kinds of concern and created a lot more paperwork. “Oh! I didn’t know he used oxygen!” “We need a special form for the oxygen use!” Somehow the case manager hadn’t relayed the information about Robert needing oxygen to the care facility. Argh! Coincidentally and something of a miracle, Robert had a pre-scheduled pulmonary appointment a few days before going to respite. The facility sent over a form for the doctor to sign regarding the oxygen plan and the social services agency sent me over a form for the doctor to sign. Hashtag overkill! (I hope I didn’t say that out loud.)

Out of the blue, the new pulmonary doctor decided to try out a different oxygen plan – let’s discontinue the oxygen for a trial period.  He doesn’t want Robert on oxygen at night because he thinks it actually may cause more breathing problems instead of helping him.

Fantastic. Can you please write that down and sign here? And here?

Step four, complete.

Laundry, packing, counting medications and re-counting medications, completing the medication form, loading briefs and disposable pads were next. Whether Robert goes for three nights or seven, the amount of supplies he needs would supply a small village. A very incontinent, small village.

Or fill a small Jetta.

Step five, complete.

The easiest step was dropping Robert off.  He is such a good sport and makes friends so easily!  One of the staff members actually knew Robert from his time living at the Board and Care Home. Everywhere Robert goes, someone seems to know him. He delights in this sort of “celebrity.” 

While I finished signing more paperwork (I am not kidding), Richard ran to the store to get some chocolate ice cream. We couldn’t bring Rocky Road because someone in the house has a nut allergy but I am sure Robert was just as happy with the chocolate.

Richard and I said our goodbyes to Robert and he smiled and said, “God Bless You.”

Step six, complete.

After all this, I really did need respite!