We have had a busy week with visitors. It really came to a head Thursday afternoon. We ended up having a sort of summit conference here. We had already arranged for our doctor to be here, but then the Palliative Care team from Waikato Hospital Phoned & said they were coming about the time the doc was due, so I figured we may as well get our caregiver & the district nurse here as well, so that everybody is working off the same page. As well as all that, our Hospice Waikato field worker turned up for a visit as well.
It was a very productive session. We will be getting a set of crisis management sheets, so that if something goes wrong I will know what to do, instead of going by guess & by God & feeling like my ass is hanging in the breeze somewhat, I will now have a very definite set of guide lines to go by. So for that matter will anyone else that I entrust with Jude's care, such as Christopher. All sorts of new meds for pain management have been prescribed as well. Friday saw the arrival of the rep that markets the patient hoists. The one we had wasn't particularly satisfactory, with Jude tending to slip through it. We now have a different one that is much easier to manage. It is making my life a lot easier now that I don't have to bodily lift Jude around so much. It certainly makes getting her into bed a lot easier & we have sorted out her nightly commode visits so they are easier for both of us.
The weekend sorta slid by, as wet weekends do. Saturday night Lorna from next door came over for tea. It was great to cook for someone else & to be able to sit down & chat over a meal. I miss that dreadfully with Jude. We used to chat a lot at meal times. We also got Troy from next door number 2 to come over & give us a quote to redo the little bathroom as a wet area. It was a good quote, so we accepted it. I was intending at the least, to take up the old vinyl, but as usual, once I got started, I am ending up doing a lot more. It will save us money in the long run& I am happy puddling around doing it. It is a little frustrating having to work around Jude's sleep time, but I'm making good progress, so will plod on & should have quite a bit done ready for when Troy starts in earnest on Thursday.
Wel, thats about it. We get to meet our new MND Field Worker, Graeme, on Friday. The poor bugger has been lumbered with not only all his own clients in Tauranga, but all the Waikato ones as well, theoretically accomplishing all this in 20 hours a week. Optimism is a wonderfu; thing isn't it ?
Monday, September 19, 2011
Monday, September 12, 2011
Thoughts on lessons
I talk to a lot of people about MND, both those with it, those who care for someone with it & those who know or have known someone with it. I am starting to recognise a commonality with nearly all of us. We seem to without exception. ask the question, "WHY?" For some reason, this ailment seems to be selective. Without exception, all folk that I have come in contact with that devlop this illness, are nice people. I have yet to meet anyone with it that isn't a nice person, which makes the question "WHY?'' all that much more pertinent.
My spiritual faith says to me that the whole of our life consists of lessons that we have chosen to learn. Caring for someone with MND has seen some pretty big waves battering at the breakwater of my faith , as I have mentioned elsewhere here. It's very difficult to come up with something positive to be learned from coping with something like this.
I was talking to an old friend yesterday whose beliefs run along similar lines to mine. He is one of those eternal optimists who can find good in every situation. Well. nearly always anyway. I hadn't talked with him in a while & even he was struggling to find anything positive to say about MND. We chatted for a while, then suddenly, in a flash of insight, I came up with what I believe the lesson to be learned from MND & diseases like it, is. In a word, acceptance.
None of us really want to be in the situation of having to deal with MND either first or second hand. One thing that I realise now is that I deal with it in what is maybe a strange way. Other than finding out what the theory of MN is & how it affects the body, I have deliberately not delved too far into how it affects the body. Some may feel this to be a head in the sand attitude, but I don't agree. As each stage of the disease happens, I deal with it in my own way. Part of that is not worrying about things that haven't happened yet.
It would be very easy, under the circumstances to fall into the trap of the "Why me?" syndrome. It's a dreadful disease & it is difficult to understand why it should be inflicted on ANYONE let alone nice people. This is where the acceptance comes in. WE don't know why, we don't think its fair. But there it is. Right in your face. You need everything you have to deal with it. So... acceptance. you just have to accept that it's a huge part of your life now. You don't have to like it, just accept it. Save all your energy for dealing with it. You will sure as hell need it.
My spiritual faith says to me that the whole of our life consists of lessons that we have chosen to learn. Caring for someone with MND has seen some pretty big waves battering at the breakwater of my faith , as I have mentioned elsewhere here. It's very difficult to come up with something positive to be learned from coping with something like this.
I was talking to an old friend yesterday whose beliefs run along similar lines to mine. He is one of those eternal optimists who can find good in every situation. Well. nearly always anyway. I hadn't talked with him in a while & even he was struggling to find anything positive to say about MND. We chatted for a while, then suddenly, in a flash of insight, I came up with what I believe the lesson to be learned from MND & diseases like it, is. In a word, acceptance.
None of us really want to be in the situation of having to deal with MND either first or second hand. One thing that I realise now is that I deal with it in what is maybe a strange way. Other than finding out what the theory of MN is & how it affects the body, I have deliberately not delved too far into how it affects the body. Some may feel this to be a head in the sand attitude, but I don't agree. As each stage of the disease happens, I deal with it in my own way. Part of that is not worrying about things that haven't happened yet.
It would be very easy, under the circumstances to fall into the trap of the "Why me?" syndrome. It's a dreadful disease & it is difficult to understand why it should be inflicted on ANYONE let alone nice people. This is where the acceptance comes in. WE don't know why, we don't think its fair. But there it is. Right in your face. You need everything you have to deal with it. So... acceptance. you just have to accept that it's a huge part of your life now. You don't have to like it, just accept it. Save all your energy for dealing with it. You will sure as hell need it.
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