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.  

Epilepsy Awareness Month: Preview

I have something very special planned for Epilepsy Awareness Month this year and I hope you are as excited as I am!

For years I have had the dream of creating a Reality Show about caregiving as well as making a Documentary about caregiving and Robert.  Sure, the Reality Show about caregiving won’t be as salacious as the Kardashians or as over-the-top as any of the Housewives shows (or so I’ve heard) but it would be real.

All I needed was a camera.

As a huge surprise this year for our anniversary, Richard bought me a camera! It isn’t a professional, filmmaker camera but it is going to do the trick to get me started.  I consider it my “training wheels” camera and I have been reading the instructions and playing around with it and filming everything in sight.

The odd thing about my dream of creating a Reality Show or Documentary is I have never made a film in my life.  I created plays when I was a kid and I was an extra in a few television shows and movies when I was in my twenties but actually making a film? It’s been a dream of mine but I have no idea why and it just won’t go away.

I don’t question my gut so I am going to do a warm-up by using the camera during Epilepsy Awareness Month.  Throughout November, Robert will tell us stories about how Epilepsy has impacted his life and will tell us a little bit about his daily routines. Richard will talk about being a co-caregiver and how having his brother-in-law with us has impacted his life. I’ll share about my day as well but I prefer the “behind the scenes” camera time.

Luckily, Robert is a ham so I’ll be lucky if I can get him to stop talking!

All of us will answer any and all questions about Epilepsy and caregiving so please use the comment section below to leave your questions or what you’d like Robert (or me and Richard) to talk about.

While I don’t have a person holding a huge microphone or a director’s chair with my name on it, I do have a camera and Robert and a lot of stories. I have also been practicing my “Quiet on the set!” and “Rolling!” directives.

(Somehow, the dogs don’t quite understand what that means yet . . .)

I hope you enjoy the series in November. Please share and help us spread Epilepsy Awareness & Education! 

Connecting all the Pieces

I was recently asked by a friend how Robert’s pulmonary issues are connected to his seizures.

I thought this was a terrific question and one I have been trying to understand ever since his pneumonias started showing up a couple of years ago.

But first, I had to sing “The knee bone is connected to the thigh bone, the thigh bone is connected to the hip bone, the hip bone is connected to . . .” You get the idea.

I couldn’t help myself.

That is the million dollar question. How are the seizures related to his proclivity to develop pneumonia at the drop of a hat?

Robert’s pneumonias have always been classified as aspiration pneumonia. Sometimes, the pneumonia doesn’t even show up on the x-ray which confuses the heck out of the ER personnel. However, a doctor once told me that it is not always possible to diagnose pneumonia by x-ray – it is diagnosed through symptoms.

Robert has the symptoms every time and we are well aware of those symptoms (cough, fever, high pulse, low blood pressure, reduced mobility and “brain fog”).  In Robert’s case, sepsis is usually an unwelcome companion with his pneumonia (and no matter how quickly we recognize the pneumonia, the sepsis sneaks in there).

The pieces are starting to come together with each new specialist Robert sees.  A year ago during one of the hospitalizations, Robert saw an ENT and was diagnosed with dysphagia (a swallowing disorder) which was thought to be causing his aspiration pneumonias.

Great! He was put on a modified diet (called either “chopped” or “mechanical soft”) and thickener was added to all of his drinks.

Two months later he was hospitalized again with pneumonia so this wasn’t the only piece of the puzzle.

Earlier this year, Robert’s pulmonary doctor did a couple of scans of Robert’s lungs and concluded that his lung muscles were weak and there really wasn’t much more to do other than try to manage the symptoms before Robert needed hospitalization. He explained that the lung muscles were weakening much like Robert’s leg muscles and other muscles were weakening and it would just be a matter of time before he couldn’t recover from one of his pneumonias.

I appreciated his frankness and the explanation of what was happening. Since then, Robert developed his typical pneumonia symptoms five times (that’s just this year) and the pulmonary doctor put him on antibiotics each time and we were able to keep him home while he recovered.

In June, however, Robert’s mobility was really taking a hit.  His leg muscles were getting exceptionally weak. He could no longer use a walker and we had to use the wheelchair 100% of the time.

I still didn’t know what was causing this muscle weakness and the decline. The decline seemed to be so rapid that it was head-spinning. It was all my husband and I could do to try to keep up with Robert’s increasing needs.  

Finally, the neurologist told us to go to the hospital.  They weren’t sure what was going on either but suspected a neck compression on the nerve in his spinal column (which would really suck). He needed to be in the hospital to investigate further.

We were fortunate that the neurologist on staff during Robert’s hospital stay was a specialist in movement disorders.  She was easy to talk to but exceptionally brilliant. Robert couldn’t have been in better hands.

She determined that Robert did have a neck compression but it wasn’t severe enough to cause him to lose his mobility. Instead, she diagnosed him with Cumulative Traumatic Encephameylopathy and Parkinsonism and started him on a new medication (Sinemet) which helps manage the symptoms. Combined with physical therapy, Robert’s mobility returned to a level I hadn’t seen in months.  It was such a relief.

I had a question about Parkinsonism which the neurologist answered at Robert’s most recent neurology appointment: it is different than Parkinson’s disease. Parkinsonism is just the symptoms of Parkinson’s disease and not the disease itself.  Parkinsonism can cause muscle weakness (including the lungs), movement disorder (Robert’s muscles were weak but they were rigid), tremors and swallow difficulties.

Things were starting to make sense.

From what I understand from the neurologist, the CTEM and Parkinsonism are caused from brain trauma Robert sustained due to a lifetime of uncontrolled seizures, two brain surgeries and dozens of concussions (caused from falling during a seizure).

This does make more and more sense to me. I think of Muhammad Ali who developed Parkinson’s syndrome due to being bashed in the head multiple times during his boxing career.

The brain can only take so much trauma.

Robert sees many specialists (three neurologists, a pulmonary specialist and not just an ENT but an Otolaryngologist for his swallow disorder) - and don’t ask me to pronounce that type of doctor!

It seems recommendations for treatment and piecing together the puzzle of his illnesses is pretty fluid. Prescriptions change, medication dosage changes, even his diet recommendations change (Robert no longer needs thickener as the doctor thinks that makes swallowing more difficult for him). 

Richard and I just manage the best we can and help Robert understand what is going on with him as much as we can.

We know that Robert’s body doesn't handle illness as well as the rest of us because of the compromised brain function which ends up affecting his mobility and creating sort of a "brain fog." He forgets words, has trouble telling us what he wants to say and has a weaker grip on his pen so has trouble with his word search books. He gets drowsy and slow and the ability to walk becomes a luxury until he recovers. For the same reason, it also takes him a lot longer to recover from any sort of illness.

He is sick again now and on antibiotics. He has trouble walking, is having breathing difficulties and has his brain fog. I am monitoring his vitals closely in case there is an indication he needs to be hospitalized.  

That's my understanding of the inter-related workings of his issues. 

Epilepsy with uncontrolled seizures to brain trauma to Parkinsonism and CTEM to pulmonary problems, dysphagia and mobility issues. 

I may not have all the pieces or understand all of what is happening but the idea that everything that is going on is related and is really ultimately caused by his uncontrolled seizures renews my advocacy to spread awareness about epilepsy.

There is not a lot of research out there about the effects of epilepsy on adults with uncontrolled seizures.  However, I don’t need to learn what happens by reading about it.  We’re living it and I would love nothing more than to stop epilepsy in its tracks.

(Obviously, not everyone will have the same experience as Robert so it would be nice to have more research about the effects of uncontrolled seizures.)

Please help me spread awareness about epilepsy and, if you’re so inclined, check out a few epilepsy organizations that do terrific work researching epilepsy and educating people about it:

CURE Epilepsy

The Epilepsy Foundation

Robert’s Birthday Fun

Robert turned 49 years old on Saturday, September 6.  Woohoo! Happy Birthday, Robert!

Richard took a birthday cake to program when he dropped off Robert on Friday morning. I had forgotten to tell program that we were doing this but they know me by now and are not going to turn away cake! 

I wondered all day how the party went so after work on Friday, I asked Robert about it.  He’s a man of few words so the conversation went a little like this:

How was program today?

Robert (smiling): It was EXCELLENT.

Did you have your birthday party?

Robert (smiling): Yes, we did!

How was the party?

Robert (with a huge smile): It was GREAT!

Did everyone sing happy birthday to you?

Robert (grinning from ear to ear): Yes, they did!

Did you guys eat cake?

Robert (still smiling): Yes, we did!

Was it good?

Robert (still smiling): It was DELICIOUS!

I think he was happy!

We let Robert sleep in a little bit on Saturday since I knew he would be up late with his family birthday party happening later in the day.  Once he woke up, Richard and I told him happy birthday! Robert responded with a “thank you” and “today is my actual birthday.”

Yes it is!

Richard and I spent the day cleaning the house and running errands to get everything ready for the family party. Robert relaxed watching Family Feud and working on his word search books.  Every now and then, Robert would tell us, “Today is my birthday!”  

We responded, “Yes, it is! Happy birthday, Robert!”

Robert was so excited about his birthday that he must have repeated this 20 times throughout the day. 

By chance, I saw San Francisco 49er football plates and napkins at the store and since Robert loves the 49ers, I thought we’d have a 49er themed party.  Richard saw them and immediately made a connection of Robert turning 49 and having a 49er party! Sounds good to me and Robert loved it!

Eventually, it was time for the party and Robert (who usually gets cranky with a lot of noise) didn’t fuss about turning off the television or having a lot of commotion. He seemed to enjoy having a lot of people talking and laughing and even gave the dogs pets when they wandered by (yes, even Taz!).

We had four dogs and nine people, sometimes all in our tiny kitchen! The laughs were just what this house needed after months of worry and decline and mood swings. (Robert’s mood has improved greatly since his medications were adjusted and he is able to walk again. It’s amazing what a difference attitude makes in everything!)

Richard grilled corn on the cob and cheeseburgers - real ones for Robert and most of our guests and veggie burgers for us and Rachel. 

Robert read all the cards after dinner and opened his gifts. He even won $15 on a lottery ticket he got as a present! Chocolate cake and Rocky Road ice cream came next and Robert was in heaven (and will be for a while because we have a lot of cake and ice cream left over!). 

Fitting for the 49er themed party, Other Brother gave Robert a 49er cap to match his own. It was delightful to see the two of them together in matching caps!

The day was also the 17^th anniversary of me and Richard which just added to the enjoyment of the day. 

After these last few difficult months, I am grateful for the gathering of our family for lots of laughs and a wonderful celebration. Even though health problems persist with Robert and Carol and Richard, I was able to appreciate how healthy they are right at this moment and enjoy the magic of the day. 

Happy birthday, Robert!