Saturday, May 6, 2017

Always One More Thing

For caregivers, there is always one more thing.

Add another specialist? Sure, no problem.

Always excellent.
Increase the number of appointments per year with a doctor (or multiple doctors)? Of course; it’s needed.

Increase blood tests/CT scans/MRIs/x-rays? Okay. We will fit those in.

Can you add brushing his teeth to the daily routine? And bring him in more frequently for cleanings? Okay.

Don’t forget to floss his teeth, too. Sigh.

Then, there is the “caregiver creep.” You know how it is. You start out with a walker and end up with a regular walker, a 4-wheel walker, a wheelchair, a transport chair, a shower chair, an acapella device, an inhaler, a nebulizer, an oxygen machine and hospital bed.

And that’s just off the top of my head.

We always get used to whatever changes or additions are made to our routine. We have to – it’s what we do!

It is what caregivers do!

It helps that the loved one I care for has an unbeatable, excellent attitude. He is a good sport about everything and only occasionally gets cranky (usually when he’s tired or recovering from a lot of seizures).

There are times, though, when the one more thing just is too much. It is the last straw, which, for caregivers, means we just need a minute to regroup and then we will get back to managing and coping and accepting again.
Robert can even fall asleep with this on!

For me, it was the flossing. Really? It isn’t that I can’t do it or do not see the importance of keeping his teeth and gums healthy in case he aspirates during a seizure but it is another task added to an already lengthy and time-consuming list. It is the time-consuming part that is so maddening. Those five and ten minute tasks add up!

I could see the benefit since his bouts of pneumonia and the severity of them diminished (at least they had before this year). The extra dentist visits and increased oral hygiene really was helping! (I have to admit, however, there is no way I can floss Robert’s teeth twice a day. I’m lucky if I can do it on the weekends but I do it when I can.)

This year, though, he has had pneumonia twice! It didn’t land him in the hospital but he was pretty sick. Richard and I were able to take care of him at home while monitoring his vitals, using the nebulizer and keeping in close touch with his pulmonary team.

Robert not only has Restrictive Lung Disease and recurring pneumonia (well, along with his epilepsy and other issues), he has the darndest time coughing! It is difficult for him to purposefully make himself cough to get the gunk in his lungs out. This means it sits there and germinates, creating a little bacteria paradise (for the germs, not Robert).

We use the nebulizer with Albuterol followed by a saline solution which occasionally makes him cough. He also uses an Acapella which is a device he blows into to help exercise the lungs.

Nothing produces a really great cough, though.

The solution? More equipment!

During one of Robert’s hospitalizations he used a TheraVest which is kind of like a life jacket on steroids. It fits snugly on Robert and hooks up to a machine which blows up the vest and makes it shake. It also pushes up a bit so Robert almost has to cough! It is a pretty cool device.

Robert’s pulmonary team decided after his pneumonia in March that he should have one of these vests at home. Genius! When he has pneumonia we will put that on him and get the gunk (yes, that’s a technical term J ) out and he will have a quicker recovery period.

Or so I thought.

The approvals finally came in and a nurse delivered the vest. The set up and training took much longer than expected but that was fine, the nurse was nice and knew what she was doing. Robert was a good sport trying it on and going through a session. The nurse explained the machine was pre-set to take Robert through a 30 minute session.

Okay, no problem. Thirty minutes when he is sick in bed is not an issue. He will be able to do it and it will help him cough and then breathe better. Awesome!

The nurse continued with the instructions, glanced at her notes and said the doctor ordered the treatment twice a day for 30 minutes each time.

Wait. What? Twice a day? Thirty minutes? Really? It takes two hours for Robert to get ready in the morning, two hours to eat dinner and he has to be in bed by 8:00 in order to get enough sleep to stave off seizures. (Not to mention the time in the bathroom for changes and grooming!)

Well, crap. When are we supposed to fit this in? How am I supposed to work full-time, get Robert enough sleep, take care of all of his other personal care tasks and maintain my sanity?

Yeah, I let myself take a minute to have a little mini-meltdown. (In my head, of course – the nurse was still here after all.)

It took all of a day to figure out how to add this into the routine. We definitely cannot get Robert up any earlier in the morning but Richard suggested Robert use the vest when he gets home from Day Program. Then I set him up with it after he has eaten dinner and we have finished the post-dinner routine. He gets to watch television with it on (although the machine is very loud so going deaf will just have to be something we deal with in the future).

So, yes, I allowed myself a meltdown but then pulled it together and Richard and I figured out how to manage this one more thing. That’s what we do.

That’s what caregivers do.

Let yourself have that meltdown but then suck it up and get to work. That’s what we do.

That’s what caregivers do.

It has been less than a week of our new routine but it is working out and Robert has had some productive coughs. We might have days when the routine is not going to work and we can’t fit everything in a day but we are going to do the best we can. That’s what we do.

That’s what caregivers do.

(For a slightly different, less angst-filled perspective, please read Richard’s post about this same topic. Richard is definitely more of a “let’s do this” kind of guy.)

Thanks for reading, everyone. I don’t say that often enough!



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