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.  

A Gratitude Reminder to Myself

Things seem a little out of control in my caregiving world right now. 

Grateful for caregiving friends

We have mood swings, difficulty walking and cranky behavior.

And that’s just before I’ve had my coffee!  (BaDaBam)

We’ve had medication changes, lots of coughing and changes in seizures.  Robert has hallucinated a few times after a seizure which is very disconcerting for all of us.

I have called his primary doctor and his neurologist to figure out what is going on.

Robert’s pulmonary doctor told me at the most recent appointment that Robert’s muscle weakness we see in his legs isn’t just in his legs but is most likely indicative of increased weakness everywhere – lungs included.  This lung doctor, who also works regularly in the ICU and sees plenty of pneumonia and end-of-life situations, gently broached the topic of Robert’s susceptibility to pneumonia and how eventually he may not recover. He told me we need to think about whether or not Robert wants to be on a ventilator when it comes to that.  

This doctor said the next time Robert gets pneumonia, they will use a scope to get a tissue sample of the infected area and target antibiotics for that organism. He even said he could then prescribe antibiotics for us to have at home when an infection first appears so we can cut down on the hospitalizations.

These scenarios were “when” not “if.”

It doesn’t help treatment now or in the future that Robert is already resistant to some antibiotics. When Robert has a persistent cough I don’t want him automatically put on antibiotics unless there is an indication of a bacterial infection. Neither do his doctors.  I want those antibiotics to work when we really need them!

There seem to be a lot of physical changes in Robert and they seem to be coming quickly.  I log everything (and I mean everything – daily vitals, seizures, behavior) so this is not just me imagining things.  Sometimes I wonder if maybe things haven’t changed and it is me obsessing and imagining.  After all, I thought Robert was declining last year, too, but Other Brother didn’t see much of a change and he doesn’t see him as often as I do. 

Then I look at the log and realize that the amount of seizures has increased. His cluster seizures are more frequent. Hallucinations are new. Coughing is continuous. There is a huge spike in entries about his sour mood.

I go through a list of questions of what can be causing all of this:

Have I become complacent with his medications and not giving him the correct ones? I double, even triple check his weekly container. I double check the medications in the med cup before handing them to him.  No, meds are what he is supposed to be on.

Should the timing of the meds change?  No. I checked with his neurologist and he is happy with the timing of all of the medications.

Is he tired of me telling him to “hurry up” to get ready to catch the Day Program bus? I don’t think so. Why would he all of a sudden tire of his older sister nagging him when I’ve done it our whole lives?

Is he not sleeping well which can lead to increased seizures and a change in mood?  Quite possibly. His cough has been pretty bad lately (still, no sign of infection though). It’s quite a dilemma whether or not to control the cough: if I give him cough medicine to stop him from coughing then the gunk just sits in his chest germinating. If I let him cough it out (which is difficult for him to do since he tries to suppress his coughs) then it disturbs his sleep.

Sometimes I wish I was a doctor so I could know which one of my theories is crazy and which one is on the right track.

Yesterday Robert had four seizures between the morning and evening (not including any he might have had during Day Program which were missed) and uncontrolled coughing in the middle of the night.  I woke up at 2:30 in the morning to Robert yelling for me. Taz and I raced downstairs to find Robert soaked because he threw up while coughing.  Bedding changed, Robert cleaned up and changed and laundry started then back to bed for all of us.   

Bring on the coffee!

Sometimes I wonder if I am too focused on the future and trying to control what that looks like instead of focusing on now and managing the current symptoms and behavior. Worry about Robert getting pneumonia and not surviving in a year or two or five as the pulmonary doctor said is not going to do anyone any good. 

What helps me not worry is believing I am doing everything I can to manage his care to the best of my ability. I advocate for him, I work with the doctors knowing we are partners in Robert’s care and I keep him entertained with his favorite things: word search puzzles, Family Feud, Jeopardy and Wheel of Fortune.

What also helps is being grateful to those that help me through this caregiving experience. My husband, Richard, who deals with back pain and pain management issues quietly comes downstairs in the middle of the night to ask what he can do to help. My daughter makes me laugh every single time we talk. My best friend regularly joins me for Coffee with a Caregiver and listens to my concerns whenever I need her. I know that Other Brother is extremely generous and is only a phone call or email away (although texting at 5:00 a.m. is strongly discouraged).

My caregiving friends, who are going through their own struggles and time constraints and worries, find time to reach out and support not only me and Richard but our entire caregiving community. 

When things seem out of control and I have no idea what the future holds, gratitude is the rock that I hold on to.  I can’t control the future. I can’t control the seizures. I can’t control Robert’s next bout with pneumonia. 

I can control what I am grateful for and how often I remind myself of it.

Right now, I need that reminder; I need to hang on to those I am grateful for. I need that gratitude.

And another cup of coffee.  

Robert Update: Define “Decline”

Robert had a follow up visit with a stand-in GP the other day.  This was to give us the results of the pulmonary testing Robert had done not too long ago which had been ordered because he’s been hospitalized twice in the last 11 months for pneumonia.

His regular doctor is terrific and she wants to get to the bottom of his seeming susceptibility to pneumonia.

I was hesitant to see the new GP only because you never know what you might get with a new doctor.  This new doctor was filling in for Robert’s wonderful regular doctor – who is now on medical leave herself!  

Yep, even doctors get sick.  In fact, the last time Robert saw her (when she gave us the referral for the pulmonary testing), we were swapping emergency room stories.  She had recently been in the ER and even she – A DOCTOR – had trouble getting the staff to listen to her.  She said the ER is so chaotic that the staff just wants you to “sit in a corner and be quiet.”  (The doctor actually said that!)

I love Robert’s GP – she gets it. She’s awesome with Robert, personally called me when he was in the hospital and one time even gave me a tip for an online shoe store – now that’s a doctor I can love!

I would have preferred to see her for Robert’s follow up but she is out for another month and I really want to get to the bottom of Robert’s coughing and congestion issues.

We lucked out – the replacement GP was another fantastic doctor.  He listened to my theory about acid reflux and GERD possibly being related to Robert’s coughing and lung issues, he told me what he was thinking about what might be wrong and how we can figure it out for sure and he was extremely kind to Robert. 

He even laughed at Robert’s jokes!

I have to say how grateful I am to have such a supportive medical team for Robert. Robert’s medical expenses are covered through Medicare and Medi-Cal (the California program for Medicaid) and one might expect a reduced level of care because he doesn’t have top-notch private insurance.

Nothing could be further from the truth for him.

We are very fortunate.

The new GP agreed with the acid reflux/GERD theory and added a medication to Robert’s growing list of daily pills (Robert is doing his part to keep the pharmacy in business!). The doctor also gave us a referral to a GI specialist and thought they may want to do a colonoscopy and an endoscopy – scopes on both ends of the GI tract. 

I’m assuming not at the same time. . .

The doctor backed off of the pulmonary specialist referral but decided to do a six minute walking test, just to be sure. 

Well, that didn’t last long because Robert’s blood oxygen level dipped to 84 in less than 60 seconds of walking (it should always be over 90 at the minimum). (Not really surprising to me since I know he starts to breath heavily when we are walking at the mall or going to Target.)

The doctor decided Robert needed the pulmonary referral after all as well as oxygen whenever he is “active” – definitely a relative term since I wouldn’t really use “active” to describe Robert.

In a span of 30 minutes (that’s counting the bathroom break Robert needed), we got a referral to a GI with the possibility of at least two tests coming up, a referral to a pulmonary specialist (with more tests to do, no doubt), an order for oxygen and new medication. Oh yeah, and more blood work to check for a nasty stomach bacteria, vitamin deficiencies and a host of other possible issues. 

On top of this, I realized I had made a mistake with Robert’s medications!  Yikes! For some reason, I recently added an additional Zonegran to his regimen in the morning. The only explanation I can come up with is his neurologist added a third one in the morning last fall and then a fourth one in the evening after Robert’s recent seven minute seizure and I got it in my head that he needed four both in the morning and the evening.

Ugh! I was sick to my stomach when I realized I – the keeper of the medications and holder of high expectations of myself – made a medication mistake.

While I’m still kicking myself for it, I need to move on.

On the plus side, since Robert was taking 27 pills per day (with my error), the extra prescription doesn’t really add anything to his daily count – correcting my error and adding the new prescription is a wash as far as the number of pills per day. 

(That’s called New Math . . .)

With more doctors added to Robert’s medical team, an order for oxygen and a new prescription, does this mean a decline for Robert?

I have noticed he has increased short-term memory problems, his right leg drags more and his coughing fits have increased and been more intense (often times causing him to vomit). Robert’s incontinence seems to be getting worse (he sometimes doesn’t realize when he’s going to the bathroom, even when he’s on the toilet which is new).

Recently, I asked Other Brother if he noticed a decline. Other Brother doesn’t see Robert as often as I do so thought he would be a good judge of seeing any real change.

He told me he thought Robert seemed about the same. “Perhaps a bit slower with the walker” but “pretty alert.”

I couldn’t understand how Other Brother couldn’t see what seems to me to be an obvious decline but then it hit me.  The last time Other Brother saw Robert before we visited him recently, was when Robert was in the ICU hooked to IV lines. 

No wonder!  Heck, compared to that, Robert is on the upswing!

What I realized in my quest to define and see “decline” is that it is important to me because I am trying to predict the future. If there is a decline, will Robert be hospitalized again soon because of pneumonia? Will he eventually need a wheelchair because he can’t walk around without falling or trouble breathing? Will we need to change the type of protective briefs he wears because of the accidents? How much longer does Robert really have? How long can we care for Robert at home if his needs increase so quickly? 

Yes, I sometimes wish I were psychic instead of neurotic.

Since I am not, I will take a cue from Robert and live in the moment. (Of course, he’s been reliving moments lately telling us “Good Morning” several times and each time as if it’s the first time he’s seen us.) 

No matter - defining decline can’t be my focus.  Keeping Robert as healthy as possible (even if it means several new appointments) is what is important. Keeping Robert’s medications straight is what is important. Arranging as much help as possible so Robert can continue to live with us is important.

Oh yeah, and visiting that online shoe store is important. . .

Phew! At least I have my priorities straight.