Sunday, July 3, 2016

Steady as She (He) Goes

Shh! Let’s keep these thoughts between us. I don’t want to jinx myself!

Robert - Ready for the 4th of July
party at Day Program
Winter is a rough time for Robert. There are numerous seizure clusters, he is constantly on the brink of pneumonia and, most days, can barely stay awake.

Summer is a whole different story!

Robert’s seizures decrease, his congestion is steady yet manageable and he is awake and a delight.

I suppose the key to keeping him healthy year-round would be to move to a climate that is warm and sunny all year.  Since that is not possible (unless I can magically transplant my entire family, my job, Richard’s doctors, Robert’s doctors and day program to a year-round, sunny climate), we have to just get through winter and enjoy the break that summer brings us.

And we are!

We have been in our new house for a year and have happily settled into a routine. Robert loves having his own bedroom and I love the bigger bathroom in which to bathe him (heck, we even have a tub/shower for him! No more baths sitting on a chair and using the sink and a thousand towels to keep the floor dry!).

Richard loves having a one story house which means less pain for him on a daily basis. He has created a beautiful garden in our lovely backyard and we have been enjoying the fruits of his labors (tomatoes, blueberries, zucchini – I can’t even name everything he is growing!).

My work commute is cut in half (if not more) and even things at work have settled down after our big move last year. (I am so grateful last summer is a distant memory!)

We are organizing and decorating and settling in and doing home improvements instead of packing, unpacking, showing our house and trying to find a new place to live.

Life is good!  No – to borrow from Robert: excellent!

Of course, there are hiccups. We have made acquaintance with the local paramedics and they are familiar with us and our new address. No major emergencies but enough that they’ve had to come out a few times.  For us as caregivers, used to living on the edge and always on high alert for the next hospital stay or medical emergency, this is minor.

Comparatively speaking, things are really good.

Robert jokes and laughs and hasn’t had a blow up in quite some time. This means he is not stressed out!

Robert continues to love his Day Program and from what I can tell has many friends.  (I asked him once who is best friend was at Day Program and he told me, “They are all my best friends.”) Such a diplomat!

Robert’s drivers adore him and he comes home from program happy, albeit usually ready for a little nap and a little Family Feud time.

He is still slow and sometimes sleepy and we have had to stop a few seizure clusters with Ativan before they got out of control (even the Ativan has worked lately to stop the clusters!). We have to coach him to eat so meals take 90 minutes instead of two hours. I have my moments of frustration with the slowness but that just tells me I need to take a break.

That is okay too.  

We are within walking distance of one daughter and her fiancé which makes me one happy mama. I have always dreamed of a family compound (you know, not living on top of each other but close enough to spend time together and help each other out). Now we need to convince everyone else that my idea is not at all crazy. Close but not crazy close. Who’s with me?!

The dogs are even well-adjusted and happy. Sure, Puppy needs more training but now we have time to devote to that and he is responding well. We will get there!

Healthy, happy, settled and enjoying life. What more can we ask for?

Of course, “winter is coming” is always in the back of my mind (and not just because I am a Game of Thrones fan) but that is not for a while.  For now, we are enjoying summer. We are enjoying the smooth sailing.

Summer is here.

Life is good.

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