Tuesday, October 21, 2014

New Day Program: A Warm Welcome

Once we determined Robert needed more care at his Day Program, including having the option of using his wheelchair when his mobility was questionable, the transfer happened fairly quickly.
Robert's first day of new program (2014)

Fortunately, we had the option of going to another program run by Easter Seals.  I have been very happy with Robert’s other Easter Seals Day Program and had no doubt the new one would be just as terrific. 

We toured the facility, completed paperwork, got the transfer arranged through Robert’s Regional Center and had the intake meeting all within a few weeks of the decision to move him.

As with any change, I was a little concerned if this was the best choice for Robert.  After all, the staff at the other program knew his quirks, Robert had friends at his other program and most of all, he had his routines.

Routine is huge in Robert’s life.  We have realized that change is actually a seizure trigger for him so I do not take lightly making any changes to his routine. 

The new program had numerous benefits though: Robert could use the wheelchair whenever we thought it was necessary (and, actually, it’s become a daily necessity). There were more staff per clients and since Robert’s needs were increasing, this was a huge bonus.

Selfishly, I was looking forward to it being in a more convenient location. Since Robert returned home from the Skilled Nursing Facility, we had decided to make the morning routine less rushed.  Robert sleeps in later than he did before being hospitalized and we no longer take advantage of the morning transportation to program.  Richard or I take him to program once he is ready and we are not rushing him or stressing him (and us) out in the morning. The problem with this plan is that the previous program is 20 minutes from our home and that much further from my office. 

As a working caregiver, this was a price I decided was necessary to pay.  Even though I arrived at the office later than I would have liked, I checked emails and voicemails in the morning (don’t worry – not while driving!).  I also spent a lot more at Starbucks because by the time I was done with the caregiving part of my morning, I was ready for another dose of caffeine!

The new program is mid-way between our house and the office and five minutes from Robert’s physical therapy. (That is a whole other routine of drop off and pick up on physical therapy days.)

So, yes, selfishly, I was looking forward to this more convenient location. I was also relieved that I didn’t have to worry about sending Robert to program with a walker when he would be safer in the wheelchair.  I was looking forward to more staff helping Robert in the bathroom and helping him make safe decisions (sometimes Robert misjudges distance or his ability to pick up something from the floor which causes him to topple over).

I’d rather not get calls that Robert has fallen onto another client or over-corrected his walker and fallen sideways onto the floor. (Both have happened.)

During the transition period, Richard and I spoke enthusiastically of the new program and Robert was excited about the change.  He did have an uptick in his seizures which I believe was due to the anticipated change.  However, I knew he would establish new routines quickly and was happy with the speed of the transfer so was confident this disruption would pass.

The intake process was extremely helpful as it gave me an opportunity to tell them about Robert’s likes, quirks and things that irritated him. I asked if it would be helpful to send a list of upcoming appointments instead of calling in the morning of each appointment and they appreciated that idea.  The intake meeting was a great chance to offer suggestions on how best to communicate with Robert, especially during his stubborn moments.

I was very impressed with the staff on Robert’s first day.  They were very conscientious about the medication I was dropping off, counting it, completing paperwork and even training other staff members on how medication intake was done. 

It seemed as if the staff had read all about Robert before he even arrived that first day.

While I was discussing medications and the bathroom help that is needed, Robert made himself comfortable at a nearby table and was soon surrounded by clients befriending the “new guy.”

It didn’t hurt that most of them were women since Robert fancies himself a ladies man!

Unfortunately, Robert had an incident after the first few days (Argh! It’s only been three days!). Apparently, he refused bathroom help and got angry with the staff person trying to help him. He was eventually changed but refused help later in the day and ended up at home soaking wet.

The site manager has been terrific with communication, though. By the time I got home from work, Richard told me how Robert came home on the van soaking wet.  I had an email from the site manager explaining what happened as well as a note in Robert’s bag from the staff member who was involved in the incident. 

I talked with Robert and explained the staff were there to help and that it wasn’t okay to not be nice to them.  Robert listened intently, as he always does, and said, “I understand.”

I explained to Robert that he would have to apologize to the staff member the next day.  He agreed and I told him the name of the person he needed to apologize to.  The whole next morning while getting ready, Robert asked me who he was supposed to apologize to.  I told him he had to talk to Noah.


Yes, Noah.

“Thank you for telling me that.”

Fifteen minutes would pass and Robert asked, “Is the lady’s name Christine?”

No, you have to talk to Noah. It’s a guy.


Yes, Noah.

“Thank you for telling me that.”

We repeated this routine until we arrived at Day Program. As I pushed the wheelchair into the building, I asked a staff member where we could find Noah. She didn’t hear me at first so Robert repeated the question. She pointed us in the right direction and Robert looked at Noah and said, “I’m sorry I wasn’t nice to you, Noah” and extended his hand.

Noah shook Robert’s hand and told him it was okay.

I talked with the site manager and told her I was sure there would be more instances like this but hopefully, they would be few and far between.  I asked her to continue to keep me informed about behavior issues and we would work on them at home. She was grateful for our communication.

I too am grateful for the communication, as well as the care they are giving Robert, even on his difficult days.

Aside from the “off” day, Robert is coming home excited about his day and the various activities they have him doing.  So far, he has tried arts & crafts, a visit to the local park and a day of volunteer work.  All things he said he wanted to do. 

He is coming home telling Richard the names of the new people he met and as far as I can tell, he already has several friends. One morning when I dropped him off he greeted one of the clients by extending his hand to hers. More of a “holding hands” gesture than a handshake so I think he’s getting along with his new friends just fine.

There were bumps in the first week but overall, I think Robert is going to be just fine – if not downright excellent.

Sunday, October 19, 2014

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.  

Monday, October 6, 2014

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! 


Sunday, September 21, 2014

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: