A caring frame of mind

Some times its easier to be a carer than others. It's easy during the day, when you are reasonably awake. Tailoring my own requirements around Jude's increasing needs for help is an on going sort of thing that requires a certain flexibility of mind. It is a case now of doing chores & errands down town while she is awake & watching TV. This isn't so hard as I am finding that more & more she is becoming a creature of habit. My only regret s for the morning is that it isn't practical to walk the dog at the time I used to, namely when the kids are walking to school. That I regret, as the kids love to stop & give Whispa a pat, but the later time has its advantages as well. I get to have my walk uninterrupted, which gives me serious thinking time.

Night time is the time that I find hardest to cope with at the moment. There is quite a ritual. When she is finally turned on her side in bed, she needs her mouth suctioned out. She does that herself. Sometimes I help, but I have a rule that I refuse to put the handpiece past her teeth. The next is to make sure the BIPAP is set up properly, mask straps adjusted correctly, water in the reservoir, mask clean & most importantly, a strip of plaster across the bridge of her nose to stop it from chafing. Fitting the mask is something not to be rushed, as it's better to get it right first time. Then there is a thin pillow to go between her knees to pad her painfully thin legs & arthritic knee, the final roll over to her sleeping postion, adjusting her pillow to the just right position, snuggling the blankets up round her shoulders nice & warm, the kiss goodnight, me saying ,"I love you," her clenching my hand, which is her way of saying the same, turning the light out & off to the lounge.

Sometimes I get to sit & watch the Discovery Channel for an hour or so with the dog on my knee, her heaving great sighs of happiness, me with a whisky & soda in hand. More often than not its me just getting settled & Jude ringing the pager because her mask isn't right, or she needs to suction her mouth again. This can happen 3 or 4 times before she finally settles. Once I'm sure she is settled &/or what I'm watching has finished, the little dog & I go for a 5 minute stroll then go to bed. The hardest bit is when I get woken up an hour after I finally get to sleep because she needs to go to the toilet. That involves waiting till she comes back so that I can settle her down again.

You will therefore, understand why sometimes it is very easy to get a little bit short when you continually get your down time interrupted. I have on a couple of occasions walked out of the bedroom in sheer frustration at my inability to divine what is wrong & remedy it. Sometimes I need to stop before I go to her & remind myself of a few things.

I think back to when I had both Carpal Tunnels repaired & How frustrated I was that I couldn't even wipe my own butt. I remember what an independent lady Jude has always been, now she can't even dress or feed herself, let alone express herself. I think about how it must feel to know that it isn't going to get better, only worse. I think about the gardening, patchwork & helping people that she used to love so much. I stack all this up against missing a few minutes of TV, or having a broken nights sleep & its a bit of a no contest really. Yes, it is difficult at times as the level of care increases, but doubly maybe trebly so for your loved one. So when the tough times come, just try & remember the love & trust you are being shown in that you have the privelege of caring for someone so brave. That certainly helps me to put a smile on my face & a kind word in my mouth at my low times.