swilkinson

You can usually edit the emails before you forward them Bonnie. I wasn't meaning anyone in particular here, I enjoy getting emails just thought too many had "threats" on the bottom of them. If I can't edit the threat off I usually delete them. Busy day today but we really enjoyed the BBQ, most of the men from Scallywags were there and I just sat Ray among them and had some time to sit back and relax. Good food and good company makes me feel a whole lot better. Daylight saving starts tonight (2am Sunday) and so I lose an hour's sleep. Guess I make that up in April eh? Sue.

I was intrigued by Janice's post, "confessions of an email junkie". I have email at a couple of places and just lately it has been mostly forwards. Now some of these are wise, some are interesting, some are pretty. Some I read and delete, some I store for later and some I forward on. What is worrying me about a lot of these is the threat on the bottom: "Forward this to seven people in seven seconds or you will get seven years bad luck". Are they kidding me? You would forward something to a friend so they can be cursed and not blessed? What kind of friend forwards this kind of threatening email on? It is like the old chain letters that people forwarded on under threat of fire and famine. Lets break the chain and wish people only good luck please! Anyway it is eight years post stroke so Ray and I have had our seven plus a bonus year, time for our good luck to come back and bless us with a life of abundance and prosperity, come on, we've earned it! Come to think of it most of you deserve a break too. We could all use some respite from worries, be they financial, physical, mental and relational so I am wishing all the people that read this: May Good Luck, Good Health, Wealth and Wisdom be yours from today onwards. We have had a week of catching up with old friends, on Monday we caught up with some old neighbours who now have a holiday cottage close by. We usually see them a little through summer so it is nice to know they will be in our vicinity from time to time and we can catch up on family news etc. We don't have that wide a circle of friends any more so it is nice when this couple re-appears. This afternoon another old friend came for a visit. He is an old friend of Ray's from his single life. His family featured in our life for a long time but I guess child raising etc broke the friendship for a while so it is nice when he appears on the scene again. Ray likes his company so it is a rare treat to hear Ray talking about old times in response to his friend's comments. I went to a women's gathering this morning and caught up with some women from my life who I mostly see only at these events. We sit and chat and enjoy each others company about four times a year. Some of them I also see in our shopping centre or somewhere else on our rounds ( two are the wives of men in our Lions Club) so they are not friends really just pleasant acquaintances. And sometimes acquaintances, given time, can become friends, as all friendships have to start somewhere. I am accepting I think now that I will never get back the years the stroke has "stolen" from us. There are no miracle cures, no sudden reversal of conditions. Life for Ray and me is at an ever slower pace. Ray had an assessment by a social worker who calls in on an annual basis as part of some of the respite I receive and she remarked that Ray's condition has changed a lot since she saw him last. Out of his hearing she asked how much longer I hoped to go on caring for him at home and I said hopefully for at least another couple of years. She patted my hand and said : "I hope you are able to too." and I think she was sincere in that.

Bonnie, I think it is not the stroke but "busy mind syndrome" that you are suffering from! All women have it, it is what allows us to multitask, we have a list of jobs running through our mind and we can go from one to another without pausing. Unfortunately this also results in muddled thinking sometimes. With a hog-tied goat, the slippery, rain-washed pasture and the dark coming on no wonder you were pressed to get the job done. The goat butting you over is another story and I guess you may have to leave it where it is until John gets home next time it happens. I've had run-ins with goats as an old nieighbour used to have a few and I always used to come out second best! Good luck with catching your family of mice, not an easy pest to get rid of by any means. Sue.

Bonnie, I am so old I remember the party line phone, and three digit phone numbers and waiting for the operator on long distant calls to be nasty before she cut you off and.... Technology is both a blessing and a curse, so I guess we older people have to just keep our cool and get used to the changes. Sue.

Sometimes when I blog it is on a bad day, events are dramas, life is traumatic and I am suffering. Sometimes I blog about the big events and life seems super-sized for the occassion. Other times I like to just blog about life as we live it here, in our suburb, on the east coast of Australia, 50 or so miles north of Sydney. Today is a typical not-much-to-do Saturday. I had a free Saturday because I thought I had a barbecue to go to with the WAGS group, as it turned out I had the date wrong and as I had turned down another invitation that left today free. It is a nice mild, spring day, fine , sunny, one of those days when you could go anywhere you wanted but it's nice some days to just have a lazy day so I decided that packing a picnic and driving was not what I wanted to do. Our local shopping centre (mall) was having a Sale Day so we went there. On a small income an opportunity to pick up a few bargains is always welcome. Discounted jewellery and watches, teen fashions, shoes and handbags etc I wasn't in the market for but the shop I love for it's fashions for the "mature figure" was having 50% off new spring fashions so I managed to get myself a couple of nice outfits to wear to BBQs and out door functions without breaking the bank. Just as well that was early in the piece because I managed to spill a cup of black coffee down the front of me and finished up wearing one of them! I was waving to a friend and gave my cup a glancing blow and all over me it went. GEEEZ, was I mad with myself. Because of the Sale Day we actually saw a few aquaintances who stopped for a chat so when lunchtime came we were still there and had a light lunch. For Ray a few people coming over for a chat is a really good thing. Each person brings an opportunuity for shared memories and although it is me now that tells the story and not him he nods and smiles and participates as best he can in what it going on. It is a social event that we have not had to engineer, a breaking out from the isolation that sometimes threatens to overcome us. It makes me feel as if we are still able to make it in the real world. This afternoon we watched the opera "Romeo and Juliet", Juliet was a little "mature" but the singing was lovely and the settling a castle on the Rhine so I enjoyed it. The power of television, bringing a German opera with a French cast into a living room in Australia. Ray of course did his find-a-word puzzles and just occassionally glanced at the screen but that is okay, at least we were there together. I just finished a long phone call from my uncle in Canada, he lives in Ontario, his two children, a daughter my age lives 75 miles away, she is a nurse, his son lives in Regina, four hours flight away. My uncle enjoys ringing his many nieces and nephews all over the world and we are always pleased to hear from him. The telephone and the computer allow us to keep in touch. He always has news of some of my English cousins too so there is always a lovely family feel to the conversation. If we can't be with him at least the phone call brings us together for 45 minutes or so every few months. It is a regret that I never got the trip to Canada we had planned for June 2000 because of Ray having the strokes in 1999. But regrets we have to live with. The rest of the day will be reading, writing letters, making an evening meal. I don't intend to do any housework, I do plenty of that through the week. The past week was busy, two days without the car meant I got a start on the Spring cleaning, did some re-arranging the furniture. The sun comes in a different angle in summer so the couch goes from the window area to the back of the living room, I change the curtains, re-arrange some of the nic-nacs, you know the sort of thing. I like to have some stand-down time if I have the opportunity, I am needing that more and more as I age. Like Juliet I am not content always with what I have. But Ray and I have been together a long time. I have been looking after him for eight years and although that has had it's difficult moments I mostly wouldn't swap my life for anyone else's. I don't know if that is acceptance but it has that feel for me.

John, there is even a name for this, it is called Seasonal Affective Disorder or SAD for short. There isn't a cure but it helps to get out into whatever sunlight is available, get to a shopping mall where there are bright lights or take vitamins to boost your immune system I always take B Complex through winter as that seems to help. Find a hobby to keep you going through winter and the time seems to go faster. I knit, sew, crochet etc, Ray does word puzzles, watches tv and snoozes. We all cope in different ways. Failing that - fly south to Australia and enjoy two summers a year. Sue.

Katrina, a few comments doesn't mean no-one loves you, just they got busy with their own lives. We are in Spring here in Australia so longer days, spring cleaning, more invitations to go to BBQs etc. That adds up to less time on the computer I guess. We still read your blog and are interested in what you do, so keep on blogging. (((hugs))) from Sue.

The car is back home and drives just like it should. I am so pleased to be back on wheels again. Hip hip hooray!!! Sue.

Ken, this is an election run up. Get on to the phone to your local candidates and chat to them about all the costs you have as a disabled person and how they are funded. Maybe we'll all benefit if one becomes Minister for Health. And if he/she doesn't at least your voice in their ear may make them more aware of the problems. I can't say how sorry I am that you're not mobile, I know how Ray must hate that sometimes and as you say toilets in parks and recreation areas are a real problem. Uneven pavers, overgrown grassed edges, even small white pebbles which are impossible to push a wheelchair through all cause me to roar when I am trying to do a quick trip to the toilet with Ray in the wheelchair. And tree roots!!!! Don't worry about venting your frustration, it's your blog and you just tell it like it is. (((Hugs))) from Sue.

Cindy, I don't know if this is a stupid question:"Is there a kind of personality profile for a Marine?" If there is I wonder if you need to find someone who is familiar with this personality type to work out how to motivate someone using this profile? I deal with Ray who is unmotivated to exercise. I act like his coach and say:"Half an hour to lunch gives you 20 minutes to exercise." or something similar, I might get away with that twice a week. By himself he would sit all day and do find-a-word puzzles and basically daydream the days away. I tend to agree that anti-depressants are not the answer, but change of lifestyle is, healthy eating, as much exercise as you can manage and social interaction. Socal interaction is a big deal for Ray as he is far more charming, alert, motivated with people around him so I use as much social interaction as I can to improve our life together. I am afraid I would not put up with verbal abuse. I used to say to the boys when they were teens and argumentative:"I am walking away now. Stay where you are and think about what you have been doing." It is a timeout strategy and a much needed one. You may be able to think of ways to minimise the angry contact you are not enjoying with your husband. With or without mdication I guess it is true he knows it is wrong and may be able to minimise it if he wished to. I am sending you big (((HUGS))) as you are the person on the spot dealing with the problem and we are only the hope-to-help advisors. Sue.

This is a funny time of the year. Our spring often comes with rain, grass growing briskly and the greening and blossoming of the countryside. This year we are still in drought although we had the rains in June there has been very little follow-up so it is a dry, dusty spring not a green one. This in some ways makes a difference to how we feel as we look forward to summer with some trepidation, thinking of bushfires and heat stroke and other byproducts of living in a hot, dry land. We have almost got back to an established pattern after our holidays but not quite. The car which I picked up as being "fixed"on Friday is "unfixed" now. That means confronting the repairers with the news that they can have it back. I will fight for a car to use while they are deciding what is wrong with mine as this is a busy week and I need wheels. I got by last week by getting a lift a couple of times and doing my chores on Friday by public transport but that can't happen this week too. I used to get "hopping mad" if this sort of thing happened in the past. I don't know why but just don't have the energy to do that now. One big thing that I have notice in year eight past stroke is that passions are fading, for Ray and for me. Ray lives a life almost entirely without passion now, his dementia and his post-stroke state-of-mind have made him milder and arguments are rarer now. I find that living with a person with dementia is easier if I take away the "naming and blaming" that is so big a part of everyday conversation in some households. So to blame Ray for whatever he does, deliberately or inadvertently is counter-productive. So I find "clean up and shut up" is my best alternative. I guess I am using that in other parts of my life too. We had a long phone call from our daughter and family from Cairns last night. Now I can picture them going about their daily rounds. It was her turn to conduct their church service yesterday and just about everything that could go wrong did, like the volunteer who was doing the music skipping one song and them having music that didn't go with the words until the mistake was discovered! Her daughter fell off a step and busted her lip so her husband attended to that while Shirley did his children's story straight out of her head. And one of the church folk said it was the best one he had ever heard! She has a sense of humour and looked back and laughed but it is just as well she can do that. I guess that is still a regret, that they live so far away. One of our old church group is in hospital recovering from an op to clip an aneurysm in the brain as she had a mini stroke on Friday. She is too far away to visit so it is prayer around the clock for her for a few days. The funny thing was that someone actually rang and asked if there is still a prayer-chain going 18 months after our old church closed! But yes, we did rally a few folk who were willing to go and do that so all was well. I can almost view that painful time in my life without regret, it might take a while to do that yet. I read in the posts about the raw emotions of people who have newly stroked or newly come to the position of caregiver and feel their pain. But I know it isn't my pain now. I have the dull ache of the person with a missing limb or a long term broken heart. It is a different kind of pain all together. But I can empathise with the newly grieving as I have experienced that pain more than once on this long stroke journey. Some posts I cannot reply to as to go back there is too painful. Maybe there are still things I need to face up to. And so life goes on, day by day, some happy, some sad. Today I will hopefully spend some time sitting beside my dear old mother while she twirls a piece of skirt between her fingers or stares unseeingly at the floor. At 89, intellect diminishing, she sits and life slips by un-noticed. Too far gone for regrets, regards or worries, beyond passion, even thoughts long gone now. So I must enjoy my days and make sure I make the most of them, before they too slip away.

Hey Kimmie, you and I think alike. I love my kids and want them close by. I hate the fact that two of my grandkids are so far away (1700 miles away) and miss them terribly. Bonnie's suggestion of rescuing a "used dog" sounds like a great idea, you save a life and buy a new friend. You are right to be proud of your kids, you did a great job of making them good citizens. Sue.

Thanks for the comments Donna, Lin, Bonnie,Fred and Jean. The car repair bill was just manageable and I have it back home again. The last couple of days were quiet and we just stayed home. Now it is raining so I guess we'll spend tomorrow quietly at home too. Might be the right thing to do after a couple of busy weeks eh? It will allow life to calm down a little, never a bad thing. Sue.

Bob, glad life is coming right way up for you again. I love your positive attitude and know that living life to the full comes at some cost. I am sure the radio station brings pleasure to its listeners so glad you are still able to keep it going. Thanks for being a chat host, it is such a lovely time of fellowship, support and goodwill. (((Hugs))) from Sue.

Funny how soon that holiday feeling fades away and the normal vultures start to circle overhead again. Today was one of those days where you just shrug your shoulders and know that whatever life throws at you means you just need to pick yourself up as best you can and get on with it. Today I almost got to the kidney specialist's appointment when the car started to act crazy. We went jumping up a hill just like a kangaroo...jump...jump..jump... Luckily I was within half a mile of the workshop I take the car to for servicing so managed to crawl there. The receptionist said no way was the car able to be looked at today but maybe tomorrow or Thursday? Having no choice I agreed. I wheeled Ray three city blocks to the kidney specialist. There was a crowd of people in there, the doc is going away for a two week "lecture tour" of Europe and The Americas so he told us though the receptionist said to her friend that he was going to Barbados. Ah! what a life eh? So we had that "instant medicine" approach. Got the xrays? Got the blood tests? he suggested a Urologist was a better choice for Ray, recommended one, dictated a letter to him and his report over the dictaphone and we were out of there in ten minutes. Phew!! I'd phoned Trev to pick us up but he got caught in traffic (multiple areas of road works on our main route) so he was half an hour late. That left us no time for lunch so I packed a hasty couple of sandwiches and Trev picked up two more ladies and we were off to Craft group. Of course I didn't have the right gear so fiddled for two hours with some bits and pieces and caught up with the gossip. Trev took me to see a doctor in one of those multi-doctor practices ( our doctor's surgery is closed with a note on the door saying "due to unforseen cicumstances etc." so don't know what is happening there!) and I finally got meds for the bronchitis so I should be feeling better in a couple of days. As a carer I always put Ray first, the family second, me third. Always have, part of my nature as a nurturer. But it does mean I often neglect my own health for too long. Completed the day with a quick trot around the shops, so we have fruit, bread, milk, all the essentials and now I can stay home for a couple of days, catch up with some housework and hope the car repairs come in within the budget! And hopefully all is well that ends well.

Billie Jo, you are doing fine. Loneliness is something we all feel from time to time. My solution is to keep busy. Because I like to read, listen to music, do handcrafts etc I can bury myself in those and time passes quickly. Maybe compile a list of small things you can do when you feel that lonesome feeling and just take something off the list to do as you fancy it. We women do like company and that is what chat is about so come to chat when you can and share some of the fun there, there is always room for one more! Sue.

Fred, glad to have you back. Ray too has some unexplained spots in his brain, one day we will have a new name for them I guess. Just the hard work back to your old level is ahead for you again as it has been five times for Ray counting the hip break and the fractured pelvis. It is worth fighting back as you know but very tedious some days. Glad your intellect was not affected as his is now. Look forward to more posts as you live and thrive. (((Hugs))) from Sue.

Hey Donna. Glad you were not hurt, watch those falls though. Reading is great for the brain so find lots of good books to see you through winter. I watched car racing with Trev last Sunday as he loves car racing and I can tolerate it...lol. I agree with the others, ignore Mum, too bad she can't find nicer things to say about you and your brother. (((Hugs))) from Sue.

Jean I read your three entries and I'm glad they all have the authentic "Jean" sound. It is good you can be so funny and yet so honest in what you wite. I too have times when I have to come home to save Ray's dignity, I do carry spare clothing but sometimes a shower as well is needed. You rightly get annoyed when the stroke is blamed for things that are attributable to other circumstances, I do too. It shows ignorance on the part of a medical professional who probably needs to educate themselves more. Ah! that wonderful chlorine perfume, I remember it from our times in the heated pool, it hangs with you shower after shower. I wish they made the more expensive brands do that too. Keep on blogging. Sue.

Sadly, here in Australia too from time to time racism raises it's ugly head. We have problems between races, often a carry over from parents and grandparents prejudices. It is sad that something as minor as skin color, cultural or religious differences can be grounds for rude, arrogant and disorderly behavior. And as you say some of those who praise God on Sundays can raise Hell on Mondays without even thinking of what they are doing. But the majority of today's young folk are good kids who will grow up to be fine citizens so we need to keep that in mind and not dwell on the minority who can't get an understanding of what life could be like if we all lived in harmony. Sue.

Marty, having three feet makes it much easier to learn to waltz! Phyllis, you really do come up with some odd jobs. I have done a few myself and if I ever need to work again will probably just do what you do and get some way of keeping the cash coming in. Maybe you could take a job closer to the ground next time eh? Sue.

Here we are back on the lovely Central Coast. We had a good holiday, of course as usual there were days that will remain the highlights of the trip and not so good days like trying to have a picnic while it was blowing a gale at Palm Cove and going to lovely spots but without my camera. The camera worked for a while then gave up on life but Craig took a lot of photos and Shirl put the best ones on disc for me to bring home. Overall we really enjoyed the experience and being with Shirley, Craig and family was a real joy. It was good we were able to mind Christopher the first week of Queensland school holidays too as Shirley could continue with her normal week. She and Craig took this Monday and Tuesday off to be with us and that was good too. That meant we got to go out three days in a row if you count our afternoon at the Lagoon, the swimming pool on the waterfront. The temp was 28 degrees (85 degrees), the water much less but we enjoyed it anyway. Ray got to sit in the water so felt he was a part of it all. Ray travelled well. We coped really well with the journey up but the journey back was a bit of a nightmare as after we made a good flight back to Sydney and picked up our commuter shuttle we got caught the wrong side of the bushfires and our two hour trip from Sydney took six hours. However we got home safely and that is something we are thankful for. While we were in Cairns Ray had some days when he seemed "out of it" but we worked around that. It was "into the car dear" and off we went to wherever the journey took us. In a way that was a "go with the flow" experience for me as mostly I was not in charge of the destination but just along for the ride. There was a park with a good amount of play equipment within easy walking distance so we took the kids there a few times. We also took Christopher to the movies to see "Underdog" which both Christopher and Ray enjoyed. Cairns is a beautiful place but it is also a young person's paradise as it is a place for hiking, fishing, snorkelling, 4wheel driving etc. Young people are really well catered for with backpackers hostels and low budget accommodation abounding. There is always a demand for bar staff etc so short term employment is readily available and it is a mecca for travelling youth from all over the world. There were not a lot of older folk around although I saw several disabled people using scooters as we drove around the city. There are a few retirement villages but as it is quite hot most of the year people tend to go back down south to retire. Many of the people we met came from Sydney originally. Was it worth it? There are a lot of hassles in taking a disabled person on vacation and that makes it more tiring I guess. In some of the photos Craig took I look about 100, and I probably felt like it some days too. I showered Ray in a tiny cubicle made smaller by an overlarge shower chair, I did up his medication in the room away from the kids, I did all I had to do for him as discreetly as possible. I cleaned up a few "accidents" luckily our daughter is understanding and kept the kids busy while I did so, she had also provided a matress protector which was good. On the whole it was worth all the effort. The time with the little ones is invaluable. As you know from your own growing up time moves swiftly and the "oldies" can soon be just distant memories, a voice on the phone, a picture in the family album, to be real we need to be real close. Ray is not a great interactor now but if Naomi wanted attention she just joggled his knee until he looked at her. That was a great idea. We had fun, she and I, making bracelets and she now has quite a collection in her "jewel box". Christopher prefers hands on experiences like playing ball in the backyard or the walk to the park. We also did all the normal things like shopping, eating out and visiting the beauty spots so that was nice too. Coming bacxk here was quite an experience, the weather has warmed up, the grass has grown, the potplants have more weeds than flowers. It is going to be a long, hot summer I suspect. So we missed the end of spring, short as it was this year, and I need to work on the garden and in "summerising" the house. Lots of hard work ahead I suspect.

Donna, just an idea for winter. A friend of mine who has had a stroke and feels the cold on her affected side has a thick shawl which she slips over her head and wears across one shoulder tied across her body. It looks quite smart and really keeps the affected side warm she says. She also wears one leg warmer, just on the affected side which you can't see under her slacks. I'm glad you are finding things about your move that you really like, such as keeping up with the football. It makes such a difference if the setting feels comfortable and fits your needs. Sue.

Hey Kristen - thanks for the update. Keep up the blog writing so I know what is going on with you when I miss you in chat. The lack of money sounds familiar, I once went to the bank when we were raising kids and no money was in the account. So all that week we had strange meals as I used two or more ingredients and invented "new" recipes. I remember tuna, rice and raisins was a popular one. As for doing more than most others your age are doing I guess it depends on the situation, there are those who have to work hard all their lives and those who seem to skim through life. I think you are gaining a lot just by being in the situation you are in. My policy is regret nothing, I complain about life, I struggle with life, I agonize over life but I don't regret it, somehow, in the long run, things work out. You have had a battle and that is for sure. But you have Patrick, Brandon and friends both here and in real time . You made those friends by being the special person you are. Your health is a concern so find a good doctor and find out what is wrong and take steps to fix it. But you are probably just stressed. So take a good long bath,take a walk, do some exercise and above all LAUGH! We all need to laugh. (((Hugs))) from Sue.

Ann, the best way is to find out who to talk to about your concerns. The cleaning of the rooms is one person's responsibility, nursing issues another's, activity issues yet another's. I also speak to staff wherever I see them so in the shopping centre as well as in the lodge. That way they are happy to see me, more helpful and approachable. I find I complain less now, but seek information more. So I find out how Mum is sleeping eating etc. Most enquiries are well recieved. I also ask about updating her clothes etc and sooner or later someone gives me a list. If this is to be where Bill will be for a while stay steady in your visits for a week or so and then gradually back off. You still need time for yourself and have to trust that Bill can stay alone for a while and still maintain his equilibrium. I know it is hard to see them anywhere else but home, but sometimes home is not the best place. (((Hugs))) from Sue.