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.

Sweet Home....

Well, my precious little family is all safely back in the nest. Jude didn't get an Ambulance home. She didn't really need it, she has recovered so much. We did have to hang around, however, till1.30 for an appointment with the sleep lab. Jude's BIPAP mask doesn't fit so well any more, so they wanted to fit her with a new one, which they did. Its a neat mask & has a lot of features that are better than the old one she had, but as far as Jude is concerned, it has one major problem. You see, it has these protruding arms that stick out for the head strap to hook on to. It's fine if you sleep on your back, but she doesn't. She sleeps on her side with her head snuggled quite fetchingly into her pillow. if she does this with the new mask, the arms tend to push the seal away from her face. I rang the sleep lab on Friday & asked for the old one back & in the meantime have repaired her old one with string & surgical tape to get her through till the new one arrives.

The little dog was overjoyed to see her mum. bouncing up & down, wriggling, hooting, squeaking & licking. All items in her repetoire of joyous action. And so diplomatic. She spent the whole trip over with her backside on Jude's lap, her tum on a cushion on the center console & her head & front paws on my lap. Utter bliss for a little black Dachshund.

One of Jude's nurses there had a trainee nurse under her wing for one of her shifts. She asked me if I could tell them both a bit about Motor neurone disease, management of patients with it & care & usage of BIPAP machines. I'm always happy to advance the cause in any way I can, but I must say that it felt a little strange to be lecturing health care professionals in a hospital, even though I do know what I am talking about these days. I learned a lot while I was there as well. I have changed my attitudes towards things medical & have decided to learn as much as I can in the field. I have learned that at Waikato, if you come to ED as a non urgent patient, you can wait up to 8 or 10 hours to be seen. I have learned that despite the shortage of staff, our hospitals still have some of the most dedicated compassionate & caring people that I have met in a while. I have learned how to reset an electronic drip & work the hospital suction system. I have even learned how to sleep in a hospital Lazyboy. No mean feat I tell you.

So we're home. Jude got a bit panicky trying to get used to the new BIPAP mask & because I couldn't find the panic button for her life link didn't want to be left home alone, so I had to phone her care giver to come round while I went out & got a few groceries. I've since found the button & she has settled to her usual calm self. She even came for a walk with me this morning. Now all we both have to do is get used to feeding her 6 times a day & work out new routines around it.

Ignorance is not always bliss

For the last few weeks we have had an ongoing problem with infection in Jude's stoma. She has also had increasing levels of discomfort & distention in her abdomen, with no relief forthcoming from any quarter. This came to a head with two ambulance trips to our local hospital & eventually a transfer to Waikato Hospital in Hamilton. Yesterday she finally got her colonoscopy & a new PEG fitted. The old one had degraded quite badly, & this tallied with my theory of it being cause for concern. The big relief was, however, that there was no sign of an ulcer which was what they were worried about.

I should explain that Jude's PEG was fitted very early in her illness on the advice of a remarkable proactive Neuro nurse. She didn't actually need it to live when it was fitted. All we needed to do was keep it flushed with water. As her needs changed, so did the use of her PEG & we just worked it out ourselves, as it never occurred to us to seek advice. So, we just didn't realise that we had been putting far too much into her poor old tum at a time, like 3 bottles of fortisip & 200 mls. of water at a feed. Apparently, one bottle at a time is quite enough with 50 mls of water each side.

So, I'm due to go over & collect her today. Hopefully, her pain levels have dropped substantially & hopefully, they will transfer her by ambulance. This will give a far more comfortable trip than poor old Sherman can provide. When she gets here we go onto a routine of 6 feeds a day for her. We will probably work those around her sleep periods. It will probably take a bit of adjusting to, but I'm sure we will cope. Will let you all know how it goes anyway....