Welcome Back, Robert

Sometimes there aren't any good decisions in caregiving. 

Mail call! A card and bookmark from Carol

Decision number one: Do we send Robert to the hospital?

Robert couldn’t walk.  I mean he couldn’t even turn his legs to transfer from getting out of bed to the wheelchair. I could see him thinking about it.  I could see that he really was trying to get his brain to tell his leg to MOVE! but the signals got crossed and he just couldn’t do it.  

I called his neurologist who had just seen him the previous week and explained that his decline was even worse than before.  Since they had suspected a compression of the nerves in his neck, I was advised to send Robert to the hospital.  It seemed to be the quickest way to get the MRI done in order to confirm that diagnosis and if it didn’t confirm it, to figure out what exactly was going on.

We all know how that went.

Every time Robert goes to the hospital there is a significant decline afterwards and a significant amount of work involved in getting back to baseline.  Usually he falls just short of baseline so we end up with a new baseline.

I don’t take sending Robert to the hospital lightly. Partly because I am selfish and realize the post-hospital decline not only affects Robert but me and Richard too.  (There has to be honesty and self-awareness in caregiving. It helps.)

Robert couldn’t walk so there really wasn’t a choice for me.  My concern was if there was a spine compression and he was losing mobility so quickly, what more could happen?  He needed answers as soon as possible so the paramedics were called and the ER wait ensued.

A wonderful surprise from a Guardian Angel!

Decision number two:  Do we take Robert home or find a rehab facility that provides physical therapy?

Um, he’s been in a hospital bed for over a week and couldn’t walk when he arrived.  I’m pretty sure he still can’t walk and has now lost muscle strength.

Richard and I were already past the point of being able to care for Robert.  The decline happened so suddenly (or felt like it) that we just did what we could to keep up.  Sometimes even to our own detriment.  Like the time Richard physically lifted Robert from the wheelchair and moved him to the bed (and then suffered through extra back pain for several days). 

Let’s go with a rehab facility.

(It helped tremendously that Robert was completely agreeable to this plan. Many times when making caregiving decisions, the caree and caregiver are at odds at what would be best.  That makes the decision-making even more difficult.  It’s just the worst.)

Decision number three: Which rehab facility do we use?

Our first option for Robert was to get him in the hospital in-patient rehab center. I was told some of the new doctors/residents don't even know about it.

Even though many of the nurses and a couple of the doctors and physical therapists raved about this in-patient rehab center they all warned me that Robert would have to be evaluated by a team and they would be the ones to decide if he could be admitted there. 

If he was accepted it would be so easy!  The hospital would discharge Robert and then wheel him to the rehab center (which was in the hospital but not considered part of the hospital). He would get checked in and they would do 3 – 4 hours of rehab per day!  Wow! 

The goal would definitely be to get Robert able to move and transfer so he could come home.

It felt like an exclusive, secret club and I wanted entrance granted for Robert. Please, please, please!

One doctor evaluated Robert.

Then he came back with another one.

They asked Robert questions, then asked me questions.  Dang it – I don’t even know what they are looking for so am stressed out about giving the “right” answers.  Plus I didn’t have time to study!!!

After a while I realized they were not going to accept Robert into the program. Wait – I want to change some of my answers!  “He probably won’t be able to meet the goals we set each week.” Could you please just try him out to see?  Maybe he’ll surprise you! 

In my heart, I knew Robert couldn’t tolerate 3 – 4 hours of physical and occupational therapy. I mean, his favorite time at Day Program is when it’s Recliner Day.

This now means we have to scramble to find a rehab facility.  The discharge planner helps with this and sometimes you get a really great discharge planner who goes the extra mile and sometimes you get one who just does things by the book. 

The entire hospital stay has been challenging so it did not surprise me that the discharge process was not smooth. I expected it to be smooth because I usually have a terrific experience at discharge but not this time.

The discharge planner gave me several options for Skilled Nursing Facilities that have physical therapy programs to accommodate Robert.  I asked her which ones she would recommend. She couldn’t say. 

Okay, give me a hint. Sounds like? 

Instead, she asked me if I had a particular one in mind. 

No! I’m asking you for help to find a good one.  She did help by sending out an email to all SNFs, giving Robert’s info and asking if anyone had availability. She referred me to the www.medicare.gov site so I could check ratings. It was some help but it wasn’t anything extra. 

This would have been a good time to have someone doing something extra.  I was frustrated. It had been a long two weeks (or close to it) and I just wanted someone to make this decision easy for me.

That wasn’t to be so I got on the phone and called a few facilities.  I contacted Robert’s Day Program for references.  I called Robert’s case manager at his Regional Center. I checked ratings, checked availability and checked what the PT schedule would be. The last thing I want is to choose a place that is going to just let him lie in bed all day and do 10 minutes of physical therapy on occasion.

After all of this, the place I settled on is a place Robert has lived before. When I first moved Robert to Sacramento, he went to a SNF for about two months then I moved him into a Residential Care Facility for the Elderly.  He was there on a waiver and under an exemption (since he is in his forties).  Robert lived there for a couple of years and enjoyed it until we ran into some problems with the management and it was apparent that Robert and the facility were not the right fit for each other any longer. 

It was not easy choosing this facility but I knew he would be in the SNF portion of the facility and not the Assisted Living area.  I knew that management had changed since Robert last lived there (a few times, actually). I hoped that the familiarity of it would somehow aid Robert in regaining mobility.

I even thought the Universe was trying to tell me something.  The SNF had an available male bed; the PT department was stellar and could work with Robert two hours a day for 5 – 6 days a week (which seems doable for Robert); the location was halfway between home and work and there was a bit of comfort in going to a familiar place. 

Robert was on board with whatever place I chose.  He told me he remembered this place but I’m not sure he does. 

Once we arrived, I didn’t recognize anyone but the intake social worker remembered Robert. Robert said he remembered him too. Who knows if he really did but it makes me feel better that Robert at least thinks he remembers this place (and fondly).

Robert happily settled in while I pushed away the thought that if this doesn’t work out I have no one but myself to blame.  After all, I know the problems we had here before but I am optimistic the Universe knows a thing or two about what is best.

Decision number four: Having faith in the caregiving decisions I have made. 

Working on it.