swilkinson

Blogging about nothing is good. I find sometimes I have so much I want to say that I can't say any of it. Kind of like now when my mind is overloaded so I just repsond to other people instead of trying to work on my own confused thoughts. Glad Joe is feeling good enough to join the "guys" again. You take care of you now, watch all those old movies and have a sit and relax for a while. Sue.

Fred, I do a lot of similar things, I just put it down to being a dizzy blonde with grey hair. Sue.

Maybe you are just having a fit of honesty? I've been thinking along the same lines. What is making me feel grumpy? For me it is life changing and me not wanting it to. Sue.

In the meantime :friends: Sue.

Miss you but I know how work can keep you busy. Remember all work and no play can make Kristen liable for illness too so be very aware of your energy levels and your sleeping. Sure you'll get back your normal life one of these days. Sue. :Cheers:

:Good-Post: Okay, I'm glad that is off your chest. We are all entitled to bad days, mad days, blah days etc. No little Susie or Simon Sunshines here. About those hugs, I could airmail you a big bag of them but they might get lost in transit. So I'll just send you three to go on with. :friends: :friends: :friends: There should be daffodils or snowdrops up soon and you could send me the first rose of summer because by then I will be complaining about the cold here. I think sending virtual roses are okay. the real thing might be misconstrued. :thankyou: Cheer up Gary, and yes, sometimes we fat people are also jolly but may not always be. :Argh: Sue.

I agree Sandy. Given Ray's level of care, I "qualify" for two lots of three hours a week but there is only so much care funded. This is an ongoing problem as it is allocated Veterans first, then Aged and Frail then Under-aged Disabled which is Ray. So every time someone is interviewed who is more "qualified" than I am my name goes down the list rather than to the top of the list. So I have to have someone keeping an eye on it for me. My current social worker should be acting as my advocate but isn't. We don't have elder attorneys, social workers are allocated caseloads and should do their best to see their clients get a fair go. I don't think it fair that it is all so competitive, and given that I have coped for seven years, while Ray has had his last four strokes with no care except the five hours on Mondays I think the government is getting a very cheap deal. The four paid professionals running the course are very well paid and not paid on results, just on running the programs so no-one feels responsible or is accountable for my dilemma. It is true that some of them fill their paper bags with "hot air" rather than helping with the problem. I also found out today that the social worker had put down one of Ray's goals as "doing carpentry - children's toys etc" not bad for a man who has one hand and no balance. If you hear someone yelling:"Keep away from those power tools Ray." that will be me. If I haven't gone mad and jumped ship by then.

"HI everyone. Boy have we got a full program today. Here are the highlights. Now, how would you like to tell us about your week?" So started today's Stroke Ed group meeting. Exciting eh? Then we run through the program a step-at-a- time. Some of it is quite good, quite interesting, quite well-balanced. But it is all words, words, words. I for one feel as if nothing goes into the program that will actually help. When the stroke survivors or caregivers are giving imput the caring professionals nod but the answers are the same old herrings: take care of yourself, learn to lift correctly, get plenty of exercise, get plenty of sleep. Now we come to the HOW, or maybe that is HOW THE H**L, of the matter. If I am going to care for Ray for 24/7/365 how exactly am I going to get to exercise more, relax more, get some of my old life back? How am I going to act as motivator for my survivor, do the inside and outside work, keep up a social and spiritual life, keep up with friends and family etc, etc? One of our survivors is a Veteran and his carer gets two days a week one-on-one care for him so she can lead a bit of a life, of course she also has a four year old so I am not saying she has it easy. The other three survivors are much less physically handicapped than Ray, although two live alone so have their own set of problems with that. Two of the survivors and one carer seem to have dropped out of the program and I can see why; for it to be of use to us it has to be relevant. It has to actually improve the life of the carer or the survivor or preferably both. It has to stimulate thought and motivate action. There have to be practical applications to add to the theoretical lectures. With two more weeks to go maybe they are saving the best till last? I once did an exercise in class called "The Empty Paper Bag." It was about a little boy who came late to a party. The hostess was giving out presents and the first children in line got some fine gifts, the children further down the line got some okay stuff but could have been happier but the little boy who came late got an empty paper bag. At the end of the story which was a marking essay I asked the class what they thought the boy should do with the bag. Some people said he should ask the hostess for some party goodies to take home. Some said well that was silly because everyone should get leftover party goodies. A couple of girls said that if it was them they would go straight home (out of shame or embarrassment I presumed). The answer I liked best came from one of the mischief makers of the class. He said the boy should blow up the paper bag, hit it to make it "pop" and then grab what the other kids dropped!! I guess we all get handed an empty paper bag sometimes, and each of us has to decide for ourselves what to do with it.

I guess this is the reason most neuros and stroke doctors won't give a prediction of recovery rate and err on the gloomy side. Our policy here seems to be a summary something like:"We can't tell you what your progress will be, different people recover at different rates." While that is frustrating it doesn't build up false hope. Hang in there, you are very determined so with reap the benefits of your efforts. Sue.

My mother-in-aw used to love crab so Ray would buy it for her occassionally. She used to make a creamy gherkin relish to go with it. Some things from the past I wish I could go back and say:"Give me the recipe for that please." Sue.

At one stage we had three generations here. Mum and Dad moved in because Dad was not coping and Trev was with us for a while. We managed by respecting each others space, but there were times when we were all out of sorts with each other, I guess that is natural. Each generation has their own needs and their own values. I know Ray has sensory overload sometimes so I allow him to go to bed when the littlies are here and tell them not to disturb Pa when he is resting. Mind you Tori occassionally creeps in and says:"Are you asleep Pa?" and when he opens one eye yells:"Granma, Pa's not asleep." Maybe Rolly needs a "shed", a space of his own, a man sized space, a private spot. We all need a space which won't be invaded, violated, and specifically not cleaned up by someone else. Kids need schedules too so you know where they are and can avoid them sometimes. Good luck with negotiating that one! Sue.

That "always someone worse off than me" thought only goes so far. When you are having a bad day you just need to let off steam. Being here gives you permission to have a bad day blog whenever you want. But sorry to hear of your friend Colleen's husband's death too. Bad things do happen to nice people and we can only stand by as a listener and comforter and give them a hug when we can. Sue. :friends:

Pam, glad you have the confidence now to be who you are. It is good for the young to know how it is for a survivor. They also have a better chance of adjusting to the world as it is if they realise it is not perfect and S**T happens. I think acceptance like progress back from stroke is an inch by inch thing too. I don't take my acceptance of Ray's stroke for granted, I know sometimes I am okay with how he is now and somedays I am right back to "I want my old life back." Sue.

We don't actually haggle on household goods, but different stores do offer discounts so you have to find a bargain where you can. Just like you go to outlet stores or bulk buy. I am stll not sure about the car buying but my boys are feeding me some ideas so I am praying all goes well. Sue.

I don't praise my sister very often but I do praise her for what she did today, she saved me money on a washing machine. Here we bargain shop as you probably do by looking for the best price. You start at one of the upmarket stores to get a basic price, go round the corner and ask their price and then go to where you think you might get the cheapest price. So we did that and the cheapest place salesman said:"Yes, we can meet that price." And she said;"Is that all?" And he said:"NO we can go maybe $10 lower" which made it $539 "to $530". She was on him like a cat on a mouse."$530., okay." He said:"Sorry, $539" She said:"No, you said $530." This salesman was young and of middle eastern appearance and I think admired her guts. So he trotted of and saw the head salesman and we got the washer for $530. She was so satisfied with that decision she decided we would go find some lunch. Trev looked after Ray while all this was happening. One up for Trev, one I have to tell the social worker about. Then after we came home Trev suggested we ask *B* next door to keep an eye on Ray so we went and did the pick-up too, saving money for delivery. How's that, two lots of delegation in the one day? Next week I have to buy another car. I have been contemplating what shape the car should be. My hunch is to get either a station wagon or a hatchback, and discussed with Bessy the merits of a smaller car and the saving on petrol/gas. I also have to think how I will get a car that can hold Ray and I, the wheelchair and the shopping, or Ray, me, our son Trev and possibly our grand daughter Tori as we sometimes take them to the beach. This is also our holiday (?) car so it may have to sometimes hold the wheelchair and a couple of suitcases. This is not a rush out and buy the first thing we see decision, I want the vehicle to be one suitable to our needs and within our price range and above all reliable. I've read a few blogs and posts about how hard it is for caregivers to change their thinking and take over the role of their survivor and this applies particularly at times like these. Ray was the one who made decisions on car buying, not me. This car is going to bite into our rainy day money in a serious way and I am not a person who feels adequate in these situations so I can't say I feel confident that I will make the right decisions here. I would value all the prayers, positive thoughts etc that you think appropriate to come in my direction as I ponder this. If this is how a woman of power feels I think someone pulled the plug out.

The "Craft girls" cleaned out their cupboard today. Of course I said I didn't want anything. It contained a lot of books, patterns, bits and pieces we had brought in over a couple of years. One of our ladies said she'd box the leftovers and take them to the OP Shop over at the other church. She took six large boxes and we all took at least a shopping bag full home. None of us "wanted" anything but somehow you just know that jar of "tinkle bells" or card of buttons will come in handy some day. We also washed the cups we'll need for the closing day tea, pulled down the posters for the family services we've held once a month for so long. We looked back at the empty walls and the empty chairs and it all looked so hollow. In theory all the furniture and fittings will be removed from the church and housed somewhere else. In theory. But in fact it will probably sit in some old dusty, cobwebby garage and after a while someone will come along and ask:"Why are we keeping this old junk?" and someone, not aware of where it all came from will reply:"I don't know, why don't we just throw it all out?" and they will. While we were there the husband of one of our local ministers came to take the old upright freezer to their place to be used as food storage for the Samaritans Food Chest. It will be used for a while and then be thrown away, as all second hand me downs are eventually. I like to think of old ladies being handed apple pies and icecream stored it there. And youth group leaders looking for the hamburger or the BBQ sausages, and the kiddie time helpers looking for more fish fingers. A new life for an old appliance. We will all be recycled too, the craft group "girls" will find other uses for their hands, knitting rugs for the nursing homes or tiny garments for the premmie babies at the hospital. The willing workers will work for another charity or find a niche in the kitchen of their "new" churches. We will all be okay. We are all strong women especially these widows. Most of them have been carers too, for aged parents, brother-in-laws,nieces and nephews, a dying husband and in some cases several others. They have the strength built of caring and the wisdom born of pain. And Ray will miss being the spoiled darling of them all. So looking at the empty chairs I imagined the congregation members, past and present sitting there, not as they are now, but as they were when last saw them. Chatting groups of men up the back, looking at wifes while they described the hole on the ninth, the last bowl on end eleven, the mechanic and what he said was wrong with the carburettor. I imagined the Sunday school children running in to show off the work to Mum and running back to be in the line for cool drinks and whatever the delicious plates of goodies held. It is not the beginning of the service I was imagining but the end, the slowly moving out, the emptying of the chairs. Just as today we took home our little bits and pieces so in less than two weeks we will take home our memories. And like the bits and pieces we will just take them out from time to time to see where they fit into what we are doing now.

No tears, dear one, just cheers that you are here, a bright and cheerful person holding down a job, with friends, a new husband, a lovely sister, all the things a young lady like yourself needs. We are glad you are still here too. Thinking of you tomorrow on the 1st anniversary and wishing you many, many more. Sue.

Pam, that poem has some really pretty images in it, I'll keep on coming back and looking at it. Some poetry leads you to contemplation and this one is certainly one of those. I really loves it when you are in one of your quieter moods...lol. Sue.

The journey shows the character you have built up too, from"We were going on a cruise" to "I brought Lisa home today", it has been long journey Butch and you and Lisa both deserve Olympic gold medals for the marathon you have run. Sue.

What a day yesterday was . I couldn't believe I was not in the middle of a nightmare most of the time. There was a lovely blue sky when we woke up and it seemed like a really good day. I packed up all the things for church, got into the van feeling I had forgotten something. Lunch. Went back inside and got some sandwiches made and defrosted some cake. Ready, set, off we go. Got down the driveway across the road and went to put it into gear, nothing. Motor running, wheels not moving. Van full width of the road and nothing happening.The sound of mother revving on the road woke our son who came down to see what the fuss was. I hopped out , he hopped in, moved the stick, rocked the car, still nothing. He dipped the transmission gearbox, dry as a bone. Ah Ha! more fluid needed. He poured it in, it poured out underneath. Damn. By now it was church time and all those things I do each week were running through my head. He rigged up a bottle of oil, dripping into where the dipstick came out of and managed to move the van off the road and parallel to the curve. Thank goodness for that. Our one choice now was the old van belonging to our other son known as the "Green Treefrog" (long story) so I moved Ray, the lunch, the paperwork etc into that and set off. Boy what a journey. I had to drive it with one foot on the accelerator and one on the brake, we clattered and banged through the Sunday traffic but luckily no sirens behind. Got to church half-way through the service and after a short spell to catch my breath carried on as usual. The meeting that followed the service was an important one, the last before the closing of the church. I am the President so had all my paperwork prepared but it all went pear-shaped, nothing I had prepared was right, figures out, letters disallowed, a real Devil's playground. Won't say any more , don't want to spoil your views of Christianity, suffice to say we all finished up in tears, well the female half anyway. No way you can close a church without a lot of grief. Got back to the quiet haven called home and my sister and brother-in-law were there. They had been out for a nice lunch and were now at my place for afternoon tea. Of course my BIL complained that the scones were stale. And as he hadn't brought anything he should have been grateful for just something to eat. Then my sister said she knew I was stressed and from their point of view I should give up visiting Mum. That would solve the problem. Mum doesn't know me, doesn't remember the visits so why was I bothering to go? I'll leave you to ponder that one. BUT I made that choice a long time ago and nothing will stop me visiting my dear old Mum whom I love dearly. What does it matter that she doesn't know I've been there? I know I've been there and spent some time with her. There was one more thing, Ray was upset at dinnertime and the inevitable happened. I had had enough by then. I was totally frustrated with a day that went wrong from beginning to end. And the day before my washing machine had broken down, a bit fell of the motor, no repairing that it seems. So anything that had to be washed would have to be washed by hand. Today I had our friendly door-to-door mechanic here, he confirmed that there was little I could do with my van without incurring great expense. He tuned the "Treefrog" up so it sounds okay so I will drive that for a while while I look for another small car, possibly a hatchback that I can lift Ray's wheelchair into. While the mechanic was here the social worker from Stroke Ed rang up to say that she had the results of our "Are you depressed?" survey. Ray scored 45%, I scored 50%. Don't worry she said, we don't take any account of scores under 70%!! So now you know why I am half-depressed, half-distressed and totally frustrated.

I want pretty patterns, spring colours, a choice of heels, strappy sandals and jewl-encrusted slip-ons. And what every girl wants for winter - slinky boots, prefrrably patent leather or crocodile skin. Pushing the wheelchair you have to wear flats for safety and comfort as you often "do hills" getting to places like specialists rooms with NO parking. And being on a pension does not make expensive choices feaisble so it is Kmart style too. Hope they have shoe cam on Oscars night. Sue. :cloud9:

I've never heard of this Gerry and never heard this song but it has words that I can see are very relevant to you and Patrick. When we were talking on chat this afternoon my time I thought for some silly reason of some words from "Pretty Woman". When asked what she would do after her knight on the white charger rescued her she said: "Why rescue him right back of course".. And I think that might just be what happened to Patrick and you. He rescued you and now you are rescuing him right back. Sue.

Hey, how about chat room here I come? There are plenty of other lonely people in the world so reaching out to them solves more than one person's problems. And we do have a few laughs too. Can't help you with the Medicare problem as we work under a very different system Downunder. But loneliness is universal. Keep going with your OT at home and keep working on improving your health. Your kiddo needs her mom to be as fit as possible. Sue. :Good-Luck:

Those were the days, we had our own "chooks" so always had fresh eggs and a loaf of stale bread and some eggs would make a big plate of what Dad called "Egg in a slice" add some bacon (if it was a week with ovetime in it) and we were in heaven. Happy birthday for tomorrow Rolly and hope the coming year takes you where you want to be health-wise and in all other ways. Sue and Ray. **hi** :Cheers:

:gleam: When the sun is shining, put your sunnies on. Glad to hear you have found a way to ease the pain. Here's to a pain free future. :cocktail: Sue.