Wednesday, March 19, 2014

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.  


Unknown said...

Trish, there could not possibly be any other person that gives Robert the TCL of caregiving as well as you. So much to do, so many ifs. Yet you always soldier on, know you all are in my heart, thoughts, and prayers. I am proud to call you friend. Here whenever.<3

e_journeys said...

In addition to what Pegi said, your record keeping is an invaluable tool on so many levels. On the one hand, it is dry data, though data that is tremendously useful. But on the other hand it is a testament to your care and a very important validation of your instincts. It is a communication tool for the doctors and it also keeps you as grounded as possible. Sending you and Robert big (((Hugs))) and sending you much cyber-coffee. <3

Joelle said...

I love you and I'm always here for you - and for coffee, whether in the morning or our afternoon runs ;-)

Trish Hughes Kreis said...

Joelle, I don't know what I would do without you (and our coffee - morning and afternoons!) Love you too.

Trish Hughes Kreis said...

Pegi, I so appreciate your support and knowing how much you are connected to and love Robert. That helps me soldier on when things get tough. Even though you are across the country, I know you are just a moment away. <3

Trish Hughes Kreis said...

ejourneys, I know you appreciate good data! It really is helpful to look back at the log to try to find a pattern or to see if I can tell what's coming. The doctors always are shocked when I had it to them but they really like it too. Thank you so much for your support. I am grateful for all of my friends!