Every day at the moment brings a change in Bill’s condition'. Since leaving the hospital over a month ago now, Bill has spent the vast majority of his time in bed on his bi-pap. He remains forever positive but he struggles now to maintain what little independence he still has. He still has excellent swallowing, eating and chewing so that’s definitely a positive. On the downside he is very weak and gets very tired very quickly. We have a new care plan in place with increased hours for our caregiver. She is here 5 hours a day, 3 days a week at the moment. We’ve managed to work her hours around my work and the boys polytech hours, so that there is someone with Bill 24/7. Luckily for us our caregiver happens to be one of my closest friends, so if the kids aren’t pulling their weight, “aunty Di” will “deal to them” for me. And if I’m not pulling my weight well she’ll tell me off too. We’re also able to be more flexible about whose around and when, because my job allows me to work my hours around what’s happening at home. We’re hoping that for the time being at least things have reached a plateau for Bill but we have come to realise that in the blink of an eye, this disease can take a turn for the worse. Just want to make special mention of our “team” of dedicated professionals, Fiona and Anna-Marie (speech therapists), Krystal (our OT), Sue (Physio), Rose and the palliative care nurses from the hospice, Bills awesome GP, Stuart Lydiard and last but not least our family and friends who appear out of nowhere just when we need them.
We are still searching for a mobility van, one did become available but did not have enough passenger seats in it for all of our kids as well. They wanted us to take it, but Bill refused saying what the hell is the use of a van, if we can’t take the kids with us. Isn’t that the whole point of the van????? so I can go with them where they want to go. (Well what can I say) So we’re still confined to home, but with a little bit of patience and a little bit of luck hopefully another one will become available soon. We’ve got a couple of weeks grace period anyway, as the independent assessor who has to approve our choice of van is away on holiday.
As I’ve mentioned in a previous post, Bill and I have become quite close with a couple in Canada, Rick and Joan.We’ve learned recently that Rick’s condition has worsened dramatically. From their blog, Bill and I have learnt all we ever needed to know about MND/ALS. The highs, the lows, the “to do’s, the not to do’s” to “give this a try” it is a very informative blog if you suffer from MND/ALS it is also a strong testimony in faith, love and spirit. Some of their korero is pretty scary, in that they are facing the future practically and head on. Something that we as maori traditionally wouldn’t do. But if I’m being honest I find it fascinating, the strength of spirit it takes to make public their innermost thoughts at a time when most would be determined to push things aside and wallow is absolutely awe inspiring to me. So to Joan and Rick just wanted to say your little piece of “hyper space” has made the world of difference to Bill and I.
That’s all from the Gardiner residence this cold night, catch up again soon.
Erin
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