Saturday, August 30, 2014

Robert is Back Home!

After nearly two weeks in the hospital and 48 days in a Skilled Nursing facility, Robert is home!

Packing up to leave the SNF
For weeks I wondered if he would be able to come home or even if I could continue to care for him at home.  By the time he went into the hospital on July 1, he couldn’t walk. Heck, he couldn’t even transfer from a wheelchair to the bed.  We were dressing him, cleaning him, brushing his teeth and dealing with days of excessive sleepiness and grogginess.  Not to mention, his extreme crankiness (and mine!). 

I didn’t think I would see the old Robert again and I certainly didn’t think he would walk again. I even came to the realization that continuing to care for him at home was not in the best interest of anyone. (That was a really tough realization and I will write about that more in depth soon.)

Robert started a new medication called Sinemet while he was in the hospital. It is supposed to help with Parkinsonism which is one of his new diagnoses. The goal was to also get Physical and Occupational Therapy while in the SNF.  Upon discharge from the hospital, the goal was to bring him home.

A lofty goal considering he had to be discharged using a gurney because he couldn’t transfer from the bed to a wheelchair.

Robert's last day in the SNF - Excited to come home!

Once settled into the SNF, Robert loved being served meals in bed and watching television. However, he was irritated with the physical therapy staff – at first.  They were making him do things that hurt his muscles or (worse) stopped him in mid-routine of brushing his hair for the third time or shaving for the fifth time. (Some people have trouble getting their caree to bathe or do their own personal grooming. I have the opposite problem – Robert could spend hours on personal grooming if I let him!)

The physical therapy team persisted.  Robert got into their routine and, for the most part, was cooperative and even enthusiastic. We celebrated each milestone from getting out of bed to learning to use a transfer pole to leg exercises and eventually walking with a walker!

There were days he didn’t want to do the exercises but I participated with him one day and suggested they do PT before breakfast since he was already awake and dressed and just waiting around for breakfast to be served.  That seemed to work except on the days when his excessive drowsiness came back to haunt him (the doctor suspects that might be caused from high ammonia levels so we’re keeping an eye on that).

The physical and occupational therapists came to know Robert and worked around his drowsiness and his occasional reluctance.  They commented on how polite he was and how hard he was working.

The combination of Sinemet, the PT and OT and Robert’s own persistence has worked miracles. 
Robert walking again!

My hope was to get Robert back to where he was in June – using a wheelchair and being able to transfer without us having to lift him. Then I knew he could come home.

He has exceeded those hopes and blown them out of the water! He is walking with a walker but we’re using a wheelchair for long distance as he still gets tired easily. He is dressing himself – including those difficult socks! He is brushing his teeth by himself and is not nearly as sleepy. He actually moves quicker and is staying awake and alert throughout the day. Robert is cooperative and pleasant and is continually surprising us with his progress.

Robert is happier than I have seen him in a very long time. He is grateful to be home. He said he liked the SNF but he likes being home “a lot more.”

Robert was happy to see all three dogs (yes, even Taz!) and said they were all “good dogs.”

Robert's first meal back home: Cheeseburger & shake --
and a little bit of Rocky Road ice cream
Robert told me and Richard on his first night at home, “It is a very happy day to be back home.”

Robert is back – not just back home but back to himself and that makes for a very happy day indeed. 

The reality is that Robert will continue to need physical therapy and for us to help him with “cues” so he doesn’t slip back into old habits. He will need to continue to be monitored to see if the Sinemet needs any adjustment. We still know with all of Robert’s diagnoses, there is no “cure” and we will see a steady decline but we have reset the starting point. We have drastically shifted where we were just a few months ago. 

Even though there is no cure and the reality is that the future holds a decline and probable hospitalizations, the moment right now is what we are celebrating. And if there’s one thing Robert has taught me, it is to appreciate the moments.

The future cannot take this moment from us.


Leslie said...

Oh, Robert...oh, Trish....just what I needed to read when my own health is slipping. I love you both so. <3

Trish Hughes Kreis said...


I am so sorry you are having health troubles! Please know you are so dear to me and I hope for only the best for you. Please keep me posted.