Tuesday, July 17, 2012

Living Normally (As Much as Possible)

   Anyone who has had a seriously ill child knows the scenario:  You can be living your "normal" life when suddenly you realize that your child needs to see the doctor RIGHT AWAY, or you need to head out to the emergency room.
   On a moment's notice any other plans and/or obligations you have are dropped or postponed.  If you have a few moments you might grab your calendar to see what things are getting chopped out of your life, what you need to reschedule, who you need to notify that you are not showing up…..
   [Real "fun" is when a specialist's appointment you have been waiting for ten weeks already gets knocked out like this…..Last week Ricki missed a lung specialist appointment we had scheduled over two months ago, because she was in the hospital.]
    And when you do finally come home, there is usually a big backlog of things that you need to do:
-        Scheduling follow-up care
-        Getting equipment/services you need
-        Trying to make your house look like a home, and not a disaster area…..(Does anyone out there have families that REALLY keep their home clean and neat in their absence????)
-        Catching up on all sorts of things that you normally do- shopping, mending, folding laundry, etc.

   In addition, the strain and stress one feels during the time of an emergency often gets pushed down and ignored, as one struggles to meet the challenges demanded of the parent. On arrival home, when one has time to think, the enormity of what one has experienced can occupy your thoughts, and built-up lack of sleep takes its toll as well……
But here's the catch: It is so easy, when there is a backlog of tasks to do to try and do it all…

   Don't fall for that trap. Get your sleep. And while some tasks need to be tackled right away, if something is not threatening a family member's health, or the basic well-being of your family, give YOURSELF some free time. Do some "normal" living.
    As an example:
    Ricki was discharged on Thursday evening. On my return home I postponed unpacking, and instead threw a load or two of laundry into the wash, made myself some NORMAL food, and cleaned a bit in the kitchen. The next morning I started the day with a brisk walk that "I don't have time for", calculating that I could unpack after shabbas (the Sabbath) if necessary. The rest of the morning I spent arranging medical matters. Sunday I spent most of the day running errands, mostly related to medical matters, but I took a few minutes to pick up the class notes of a computer lesson I had missed two weeks previously (the day Ricki was hospitalized).
  By Monday morning the real "important" things had largely been done, so I went to my ceramics class, although I left it early to attend to a matter at the health fund before it closed. Then in the evening, we did some drilling work, which left the house dusty, and an hour and a half before my swimming class I noted that Ricki's leg was MORE swollen. I quickly darted with her over to the doctor (who is luckily just a few steps from our house), I came home and wiped the kitchen down a bit (from the dust, so people could eat….), gave Ricki her clexan injection, and ran out the door to go swimming. I arrived a bit late (thus getting in only 45 minutes rather than an hour), but I went. I opt to keep my life as normal as I can……

   And by the way, that is why the blogging of "Hospital Tales" will take a while. Real life needs to comebefore the virtual one, as much as I would LIKE to "do it all"......


mikimi said...

Never a dull moment unfortunately.
What does Rina do all day being hone and attached to O2? You take care of everyone else but need to take care of you too. Good for you!

Rickismom said...

Ricki spends the day eating (eating -eating) (the drilling was part of work to prepare a gate to keep her out of the kitchen, which hopefully will be finished today). I also try and give her activities as well as include her in everyday activities. She also complains a lot. The oxygen doesn't limit her that much in the house, with a 7 meter tubing she can reach almost all of the areas of the house that she needs.

mikimi said...

Computer or arts&crafts?

Rickismom said...

both. and worksheets

Cindy said...

Good for you! Great advise to take time for you before the unimportant stuff gets done.

(And my family doesn't clean either, when I'm away.)

Cindy said...

I hit Publish then thought of more to write. :)

Beth and Ricki seem like two peas in a pod. Beth spends her days eating as well. In fact, just today she called from her art and karaoke classes to tell me that they were having a birthday party for one of the kids there, they had hotdogs and chips and cake and ice cream. I asked her if she had any and she said yes. Then I asked her if she had also eaten the lunch she brought from home, "Yep!" Ugh.

Like you, I leave a list of chores and activities for her when she's home, but she does them quickly so she can start eating. Drives me crazy.

How does Ricki feel about you putting up a gate up to keep her out of the kitchen? I've considered putting a lock on our refrigerator and pantry.

Batya said...

May G-d give you strength and health.