Happy Halloween!

I debated about posting a Happy Halloween message since it’s already 9:00 p.m. on Halloween but it is still Halloween, gosh darn it!

The Vampire and the Circus Ringmaster

Caregiving is all about routines but there are all a million reasons those routines are disrupted: appointments, illnesses, hospitalizations, declines, and even holidays!

We started with our usual routine this morning but Robert was extra sleepy and literally couldn’t keep his eyes open.  Sometimes this is an indication he is getting sick but it could be that he had a very busy week. Now that I think about it, he did have a busy week with two separate visits to two different neurologists. It was a lot of running around and answering questions, getting poked and prodded which can wear a guy out!

So by this morning, Robert was pretty tired.  I let him sleep later than usual but didn’t want him to sleep too late – after all, it was Halloween and we had parties to get ready for and costumes to put on! 

The morning routine continued, albeit a little behind schedule.  Richard offered to take Robert to Day Program so I could get to work for my own office festivities, an offer I gratefully accepted. While I finished helping Robert get ready for the day and his costume on, Richard transferred all the food we were taking to Day Program from my car to his. 

Our football players and cheerleader

Once we had our costumes on and pictures taken we piled into our cars and Richard drove Robert to program and I drove to work – both anticipating our Halloween parties planned for later in the day. 

(I wonder if the dogs had their own party before Richard made it back home!)

The evening routine was even disrupted with me unexpectedly having to work a little late and Richard handling trick or treaters and dogs and Robert by himself.  Dinner was late which pushed Robert’s bedtime routine and bedtime later than usual. 

Speaking of routines - this is Robert's third
year as a vampire!

By the time the trick or treaters stopped coming (well, by the time we turned off the porch light anyway – the universal signal that the old people in the house want to sleep), the dogs were pooped, Robert was in bed and I sat down to write a Happy Halloween message. 

Hey, there are a couple more hours before the day ends so enjoy our photos while I bask in the glory of my 2^nd Place finish in the costume contest at work.

Routines are terrific and keep the caregiving wheels turning but sometimes it is fun to mix things up and step out of our routines to have a little fun!

Hope everyone had a terrific Halloween! I would love to tell Robert what costume you wore so please let me know and I will pass that along to him. 

Let the fun continue!

(Side note: I would have posted a video of showing Robert our Halloween decorations but it seems to have disappeared. If the computer gremlins return it - or I figure out where I filed it - I will post it at a later date.) 

Appreciating the Goodness in People

Maybe it’s because there was yet another school shooting.

Maybe it’s because two sheriff’s deputies in our area were senselessly gunned down just a few days ago.

It is the small acts of
kindness that leave a mark
on our heart

Maybe it’s because I am sick of all the negative news about all of it: shootings, Ebola, this politician attacking that politician, terrorists – YUCK! I cannot even list all the negative things without feeling sick to my stomach.

In spite of all of this negativity in the world, I have to remind myself there are good people.  Lots of them. Yes, there are heroes who accomplish newsworthy feats but there are also people who just go about their day being kind in small ways. Or who just do a little bit extra at their job and don’t realize how much they help someone else.

They don’t make the news.  They don’t have a viral video to document what they have done. They do not get invited to appear on a national morning show. Sometimes, they aren’t thanked or are even aware of what they have done.

It doesn’t matter.  These are the people who count. These are the ones who remind us there is good in the world and we haven’t all gone mad. These are the people I want to thank because these are the ones who will teach their children how to be kind; show others by example that goodness in people exist.

I realize this is not an original thought but when a string of horrifying events occur, it is a matter of self-preservation to remind myself of the goodness in the world.

Appreciation goes to . . .

• Rodney who delivers Robert’s monthly incontinent supplies. He wanted to be sure we got the supplies timely so made an extra effort to deliver them one evening. He called to be sure we were home then thoughtfully parked halfway down the court and whispered as he came to the house, pushing a dolly full of briefs, gloves and bed pads. He explained, “I didn’t want to disturb the boys.” Oz and Taz were none the wiser!

• Julie, who is Robert’s epileptologist’s nurse practitioner.  Heck, Robert’s whole neurology team. They are responsive to my emails and phone calls; they genuinely listen to my concerns, questions and hesitation about any new medications. They graciously take and review my seemingly endless logs of seizures and vitals and “other symptoms.

• The barista who remembers my drink (which says far too much about my lack of imagination and frequency of coffee runs);

• Tanya from Robert’s Day Program who took time to tell me how much she enjoys having Robert at her program. She gushed how much she appreciates Robert’s positive attitude and his willingness to cheer up others having a hard day. Do I appreciate her because she told me good things? Absolutely not (because she’s told me when Robert was being difficult, too).  I appreciate the communication and her care for not only Robert but all of her clients. 

• Salita, the kind hair stylist at JC Penney.  It is a mutual admiration session when Robert goes in for his haircut and mustache trim.  There are hugs and laughter and often, there are gifts. I cannot explain their connection but it is wonderful to see. 

• Laine, a Facebook friend who lifts my spirits with her encouraging posts and knowledge about nutrition and health. We are on opposite sides of the political spectrum but I can set that aside and be grateful for the strong, supportive woman I know her to be. 

• Pegi, Kathy, Denise, Casandra, Elissa, Lisa, Cathy, GJ, Jane, Teresa and - well I am fortunate to have so many dear friends that are too many to mention. We may have met through caregiving circumstances but I have grown to love each and every one of them because of their extreme kindness and support toward each other and us and many, many others. 

• Carol, who has a special fondness for Robert and shows it every time she visits with him. They share a deep spiritual connection which warms my heart to see;

• Joelle, who is not only my best friend but who works tirelessly as a foster mom to numerous dogs while also being mom to two of her own dogs (one a “foster fail.”).  

• Richard, who may be my husband (so I might be a bit biased) but he has shown what a true friend he is by creating his own team for a Walk for Alzheimer’s to benefit our friend, Steve. Richard will be walking alone but has raised, at last count, $500 for the Alzheimer’s Organization.   

• Rachel, who is a terrific friend to many (both human and of the animal variety), makes me laugh more than what should be legal and who gently reminds me (as only a daughter can) to care for myself as well as I care for others.

As I write this I realize how much goodness there is in my world and how fortunate I am to be surrounded by such beautiful people. I could go on and on because there are so many little things people do that leave their mark on my heart. Perhaps we need to hold those moments especially close when feeling overwhelmed by the bad news of the day (or week or month).

I would love if you added to my modest list in the comments below. I would love to read about the kindness you have encountered!

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.

“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.

“Noah?”

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.

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!