swilkinson

Kim, I am so sorry to hear of Chris's passing. I could say as so many will that this is a blessing but I don't know you well enough to say that. I just want to extend my heartfelt condolences to you at this time. I have valued your support and friendship too. I felt so lost when I first came to this site and you were one who extended support to me and I have really appreciated that. I will be thinking of you and praying for comfort for you over the next few weeks as you adjust to your loss. (((HUgs))) from Sue.

Asha, Ray and I are only enabled to go twice a year. Which of course is nowhere near enough but as you all say I must make to most of all the respite breaks. I will certainly NOT attempt a spring clean on my next one. I have learned that lesson I think. Phyllis Camp Breakaway is a unique organisation and it is designed as a three day break. So it gives a lot of people with disabilities and their carers a break the two a year rule is applied as they only take a maximum of 24 people for each one. Their next camp they will hold is for teenagers with disfigurations and children with multiple disablities is the first one next year. The kids camps occur in the school holidays so they can participate without missing school. More power to the people who run them and fund them. And three hearty cheers for all who give their time as volunteers. Bless them all. Sue.

Ray and I just got back from the three day Camp Breakaway Camp. I had refused this offer while Ray was away in respite. I told myself that I would have already had a good break and he would have too so why would I need another? Well, I couldn't have been more wrong. With the stressful events prior to the funeral, including four days without a phone, the funeral itself and then the somewhat disapponting time at the womens weekend I DID need a break. I had gotten to breaking point I think, too much expectation, too little delivery can do that. And as a caregiver I really need to be calm and competent to be able to cope with Ray. His return was looming and I was in no way prepared for him to come home. So for once I took my own advice, took the phone in hand and rang them and fortunately as they had had a couple of cancellations Ray and I were slotted in to go. So the first night we sat side by side as the setting sun hit the she oaks, turning them to gold and watched a local plumber wriggle his hips and impersonate Elvis and the magic of Camp Breakaway started to weave its spell and I began to really relax and enjoy myself. Best thing I could have done. I was able to eat, sleep, stroll around the grounds and the paid and voluntary workers looked after Ray and after me as well. The meals are not first class but adequate, the huts are clean as is the linen, the showers etc. The setting on twenty acres of lawns and walkways and gardens, all overseen by a group of Rotary clubs and a foundation that was set up specifically for Camp Breakaway, are always a pleasant place to be. There were a couple of families of ducks, some baby plovers with their parents, the usual bush and garden birds and NO PRESSURE! So I do feel refreshed. I am ready to go on, I can cope. At least that is my feeling for today, tomorrow may bring another crisis and the situation will change again. But today I am strong. There were the usual collection fo frail elderly people, their trip to Camp giving a daughter or a family member a break.There was a man at our table with advanced Parkinson's who was able to stand up but not walk, he was not much older than Ray, too young to be so severely disabled. The person I spent a lot of time with is 98 and an old charmer who had lived in the Riverina and had a lot of interesting stories about life 50 and 60 years ago. He was a delight to talk to and a good distraction from my own worries so we made the most of each other's company. Ray loves the entertainment, the attention, the laughs the other staff provide. His personal carer has had him for six years now and tells him a series of jokes and stories all through the Camp to keep him smiling. Ray loves that special feeling that being with people who really do care about the aged and frail provides. He was quite frail emotionally in 2001 when he first went and I think part of his survival to this point is due to the many people who have made him feel that to go on living is worthwhile, family friends and people like those at Camp Breakaway. There are a lot of good dedicated people in the world, it is unfortunate that they are not always the ones we encounter. I am ready to go on for a while. I know the Christmas period brings it's own stresses but I will cope. I just need to take my own advice, take it easy, get some support, look after yourself.

Asha, the quote came in an email sent to me by Kristen (givincare) it is none of my wisdom. And yes,the more I think about it the more I realise that I made the right choice. We often don't realise it but we are laying down layer after layer of memories, for our children and our grandchildren. How many times have you said: "My mom used to say..." or "I remember when my grandparents..." and have a little smile at the thought too? Thanks to all for your support. Sue.

Donna, If you could have read my thoughts instead of my blog you would have known I was less than angelic. I can tell you my wings dropped off a long time ago. Sue.

Marty, I think your holiday plans sound great but I think let the women go shopping and offer to stay home with the dog. It is great to spend time with family and build those special memories but yes, it is also ok to avoid the things you know you can't do any more. Happy Turkey Day to you. Sue.

It is so frustrating when it seems like it is never OUR turn to be given a break (literally AND figuratively). I guess it is so true that nothing lasts forever though, good or bad. All we can do is feel each moment of life- cherish the good in it, no matter how frustrating- and remember for better or worse this day will be a memory before we know it. Thank you to the kind person who send me this email. She never thinks she is wise but her email closing with this paragraph certainly put life back in perspective for me. Last Thursday Trev and I went north to my daughter's father-in-law's funeral. We had a nice three bedroom unit which we shared with our other son and his family. We stayed two nights so we could settle the kids in and give ourselves some down time as well. Unfortunately both the little boys aged 16 months and three months had something wrong, one a high temp the other an upset tummy so the first night was full of the cries of small children and low on sleep. I tried to get Alex to sleep, his Dad tried, his Mum tried etc. You've all been there, done that. So Friday there were three tired adults, three tired children. Our son-in-law did his father's funeral service, it must have been hard for him to do, I don't know how he managed to get through it but he did. And did a fine job. It must be so hard to do the service knowing it is your much loved father in the coffin, not some distant relative or friend. I did the eulogy for my Dad and remember how that felt. We went to the funeral tea afterwards, it was that mixture of sadness and false laughter, when people are trying to bring back to normal a day that is still madly out-of-control for the family at least. At dinner that night I ate something that made me feel very bad the following day. Trev drove home, and I made it to the promised massage at at the women's weekend at 2pm only to find the masseuses had left early! So no massage. Instead I listened to all the others talk about their massage and how much they enjoyed it! But I guess in a way my running back and forth to my room would have taken the pleasure out of it anyway. Last year I had a ball at the womens weekend away, this year I was just not in the mood. They said how much fun Friday night had been - I felt left out. I felt as if in making one choice - the funeral - I had destroyed my share of happiness in the weekend. I guess we have all done that, had something we had thought would be so good turn sour. The paragraph I copied from Kristen's email applies here. Nothing is all bad. The weekend was not a success because of my feelings left over from the funeral but my room mate with her "can do" attitude was a great reassurance to me of the strength of women. I did have some time to chat to some of the others and I am sure that will allow me to talk to them on a more serious way in the future. We are all in pain, caregivers and survivors alike, and we are much stronger when we call up the strength of others to help us. On the Thursday and Friday I enjoyed seeing my grand children again and seeing Naomi getting acquainted with Oliver and the older two resuming their kinship. I found out how much my son-in-law's mother and brother appreciated that we had come as a family to be with them in their grief. I got to swim in a nice pool at the units and early Friday morning Tori and I walked up and down a small beach finding shells, watching the platoons of joggers (seemed like hundreds of them) and catching a glimpse of marine life in the rock pools. Kristen is right - nothing lasts forever good or bad. And we have to make the most of each day, as much as we feel able to at any rate.

I just had a phone call from the event co-ordinator for the womens weekend. If I can get there by 2pm on Saturday she will put my name last on the massage list....yeah!! All packed for tomorrow's trip with another bag to switch to for Saturday night. It is not the relaxing days I wanted but I am sure it will turn out okay. And I AM looking forward to seeing the grandchildren. Thanks for the encouragement, love and hugs from Sue.

George, have you thought of asking if you could speak as a stroke survivor at meetings like Lions, Rotary, Seniors Centres etc? I know you are a real inspiration to a lot of people here and your enthusiasm is worth bottling! I know that if Ray had had a mate like you early in his rehab he might have been more inspired to work harder exercising etc. Unfortunately he was surrounded by much older people and learned to work at their pace. So glad you are blogging here on the board so we have the benefit of your research and responses to the equipment you have used. Sue.

:friends: Just a hug to go on with. I know how busy you have been while Bill has been in the SNF. :cleaning: And I know you won't get a lot of thanks when you get home. :thankyou: so here are some roses for you. You seem to have been visiting most days to keep Bill on track. That must be nearly as tiring as having him at home. So if I could I would come over and have a celebratory meal with you :Beer-Chug: because like most caregivers you are an:Angel: to do what you do. So sit down and have a quiet dinner :Starvin: before you get to bring Bill home. You will feel tired when you take up the task again. :Zzzz: See you in :chat:. Sue.

Just got back on the air again. No, it wasn't my computer this time, it was my phone line. Someone dug up the cable and we went off the air for four days. Another of the little bumps on my way to Peaceful Street. This has been one of those muddled weeks as all my planned working on the house etc went haywire. It is as if some gremlins crept in and re-arranged life again. None of the people I had lined up could do any work for at least another couple of weeks. I guess this is down to the storms we had in June and the continuing clean-up from that. No tradesmen have had to look for work since. My neighbour is still waiting for his front fence to be repaired. We still have the funeral to go to. My daughter's father-in-law Don, died on Thurday of last week. He had not been to the doctor for almost twelve months, had no history of heart disease ( he was as fit as a mallee bull) and dropped dead of a massive heart attack. His doctor was also away so an autopsy was ordered and that of course delayed everything. The funeral will now be held on Friday 16th at 1pm. We will drive up on Thursday, spent some time with our daughter and her family, then attend the funeral on Friday, stay another night and come home. It is four hours drive north of here. Unfortunately it overlaps with another event. I took this time to have a break from Ray as I have a women's weekend starting on Friday 16th at 2pm. Yes, 2pm. So I will miss most of it. It was the highlight of last year and I have so been looking forward to it. The women of our stroke suport group get together for three days and have a ball. Now I will miss most of the weekend. I am so upset that these two events clashed. For once I was looking forward to something that would have been a real treat for me. I feel as if I am making a fuss over nothing here. I...I...I...I know, I am supposed to be the unselfish caregiver, the family stalward, the good citizen, the good friend, the good companion. Somewhere in all of that there is room to build up a mighty head of resentment and at times like this when I see something I want to do slipping out of my grasp I want to sream "WHAT ABOUT ME AND MY PLANS?" It all seems so futile sometimes. Apart from that I did rout some of the dustbunnies, brought down the cobwebs, re-arranged the furniture into a better position for summer. I didn't clean the paintwork out on the verandah, get a quote for the pergola, rub down the summer furniture. I doubt if any of that will get done between now and Christmas. BUT I will get to see my Cairns family again, will get to see the little ones playing together. The two grandchildren from Cairns will get to see Oliver who of course was born after they were here in June. The little ones have had to live with the death of their beloved Poppy since last weekend so they should be ready to have some fun with Tori and Alex. I guess Oliver will still be oblivious to it all, he is ony twelve weeks old after all. Ray was a little sad when I told him that Don had died. But I don't think he is able to hold on to emotions now and soon resumed watching the waitress pouring the teas and coffees and looking around at what the other people were doing. I guess of the two of us his is the more peaceful life.

Sadly tonight we received the news that our daughter's father-in-law had a heart attack early this evening and died. So some time next week I will drive for four hours to be at his funeral, where it is to be held and when has not yet been decided. Of the two parents he was the healthy one, the carer for his wife who has many health problems. It is so sad. Our daughter and son-in-law and two grandchildren are of course devastated at the loss of this kind man. I'll go take Ray out tmorrow and tell him that way. In the midst of life we are in death. Sue.

Sounds the same set-up as for remote mining camps in the North here. My next-door neighbour "works" in Northern Queensland 1800 miles from here, he is there three weeks out of three months but does everything else by computer. If anything goes wrong with their geo-stats he has another flying visit for an extra week. He works out the coal load from core samples ( well I think it is something like that!). The rest of the "hands on" crews work either ten days there, four days home or three weeks on, then eight days off, all to suit their lifestyle. You are brave to venture out to the restroom in such cold temps. Guess I don't need to say "take care" to a girl born in Alaska? I guess you will be glad when it is all under cover again. Enjoy your home time, it will just fly by. (((Hugs))) from Sue.

Karen, I read this and understood about a third, you will probably read mine on how an Australian election works and no doubt will find the same...lol. What is "the North Slope"? I thought an oil field? How far is it from where you live? Do you have accomodation there? What is it like working there? Glad to hear Rob and Elias are able to manage alone. Sad to hear Rob has not made the progress this time that he did after his first stroke. I can understand it though as you could say that for Ray too. The first one gets 100% effort towards recovery, the second not so much etc. Smiled at the thought that there was not enough snow! I do not like snow, we had some in England and it always gave me croup. I hacked and coughed all winter. Give me a land without snow... oh, ok, I found one...lol. Sue.

Today was my first entirely Ray free day. I did some housework this morning, tidying up the bedroom to start, bye spiders, be gone dust bunnies. Reminds me I need a new bag for the vaccuum cleaner, I tore the old one emptying it...first casualty of my war on dust. I came on to chat and had the usual fun talking to everyone, some serious talk, some general, just following the flow of conversation. It was very satisfying to just interact with people in a "normal" way, no interruptions, no running out to see how Ray was. It was relaxing just to chat for a while. Thanks to those who came by. Went to the shopping centre (mall ) this afternoon to look for and track down and maybe buy items for the upcoming birthdays, Christmas etc. I ran into a friend and spent some time over coffee chatting away. We are in the run up to elections. In Australia we all vote for the local Federal representative who sits in the Lower House (in Canberra) and for senators who sit in the Upper House all at the one election on the one day. The person who becomes Prime Minister is the head of the party that has the most elected members in the Lower House which is also called the House of Representatives. The Prime Minister is important but he is not THE most important person in the country as the U.S President is. As in most elections both major parties trot out whoever they can get of any importance to boost the popularity of the local candidate. So Sadie and I are having coffee when two men come around the corner and one almost trips over us. He shoots out his hand and there I am shaking the hand of former Prime Minister Bob Hawke. Well! people you meet in a mall! What do you say besides "Hello" and "Nice to see you again" and Yes, I've already met Craig" ? ( I had as he stopped to talk to us in another shopping area last week). I guess they don't receive extra votes based on who accompanies them on their "pressing the flesh" as we call politicians shaking hands with the people, but it was nice that they stopped and talked to two ladies having coffee out eh? The rest of the day went on as normal. I went home and unpacked the groceries, had a meal, then both our sons came in. Trev had gone over to his brother's place to mind the "boys" while Tori went to her first "Joey" (baby girls scouts) meeting with her mother. Steve came to borrow Ray's old lawn bowls as his firm is sponsoring part of a charity day at a local bowling club. Nice to see him as I hadn't had time to see him for a couple of weeks. Spoke to my daughter on the phone tonight, all is well in the Salvation Army Corps at Cairns, won't tell you all the gossip there except they are doing the interviews for the Lord Mayor's Christmas Appeal which is taking a good deal of her time for three weeks. Guess someone has to do all that interviewing or Christmas Appeals would never get the goods to the folk who really need them eh? And so the week will go on, a bit of the same, a bit different to how it goes when Ray is home here with me. It is not exactly the heady smell of freedom but it is a chance to do things at my pace and in my own way for a while.

John, Rolly Lowe who hasn't blogged for a while has some nice recipes using chili, here is a link to them: http://www.strokeboard.net/index.php?autom...blogid=195& Sorry to hear your weekend was cancelled, I've had that happen and it sure leaves a hollow feeling. Hopefully there will be another excursion to the shore for you. Sue.

Yes, yes, yes! Hip Hip Hooray! Congratulations!!!! It is the vey best news. Keep safe and well and we will keep you in our prayers. (((Hugs))) from Sue.

Ann, doing the best we can to keep our husbands healthy and stable is what you and I have in common. It is not as easy as it sounds when you just read it though is it? It is that constant awareness from the time you wake up till the time you close your eyes at night that you are responsible for EVERYTHING that happens to them. Ray is good with letting others take care of him which is why we have been able to make the shower nurse three times a week part of our routine and that gives me a break from being fully responsible for his personal hygiene. He is going into respite for two weeks so I get a chance to do a spring clean etc. This also stops me getting to screaming point and having a breakdown myself. Those years of caregiving take a toll on our bodies too so remember to pace yourself when he gets home. It is okay to say "wait a few minutes" when he wants something right away and phrases like "I'll be with you as soon as I can" work for me. And if Ray calls more than twice I do ask him not to be demanding. As Bonnie says try and set up a system that provides you with some time to yourself, with the extra care needs you will need the breaks. (((Hugs))) from Sue.

Bonnie, I like it when people blog about a normal day, it is like a telephone call from a friend saying "we did this, we did that". You and I are alike, we shop with an eye to the future. We look around, see if something can be fixed and if not at least we have an idea of what to do next. We've done some pre-Christmas looking too. A couple of November and December birthdays and then it is Christmas. Those days will just fly by. (((Hugs))) from Sue.

I must admit I am tired, not physically so much as tired of doing all the organisation. I seem to have been constantly on the go since we came back from Cairns. I have been out shopping for some more underclothing for Mum. I need to do some organising for her as well as Ray. Looking at the two weeks ahead I am still hoping to find a couple of half days to myself. This time last year I was able to visit with my daughter and her family as they were still in Sydney then. I really do miss that mother and daughter time. I keep promising myself I will take some "me" time. Will someone tell me how to do that? Sue.

"Daylight saving time: Why are they saving it and where do they keep it?" We went onto daylight saving last Sunday here in New South Wales, east coast of Australia. Luckily Bonnie blogged about daylight saving so I learned that in the US it doesn't change until 4th November so I got to chat on time. Actually I got there early and managed to have a fairly serious chat before the main crowd came in which was good too. I am really enjoying the diverse cross section of people who come into chat. Some days we have serious moments as a newbie comes in and asks questions and sometimes we joke around and party on in our virtual world. It is good there are regular chatters who like each other, have pet names and enjoy each others company. It is also good that all that can be put aside if someone really needs a question answered or just some support to help them through a rough patch. It is good when we are sensitive to the needs of others. I also chat on an Australian board called Dementianet. There are only a few people using that board which is a pity but a few of us manage to catch up with each other from time to time usually after 9.30pm as by then we all have our charges bedded down for the night. Looking after someone with dementia can be a lonely experience sometimes as just the thought that someone is mentally affected even by stroke, and somehow unbalanced, is too much for some "friends". Then add physical defects such as Ray has and the so-called friends turn and run. What wimps! Of course daylight saving is tiring the first week or two. I get up pretty early but Ray is still struggling to get up. He has a shower nurse early on Tuesday and this week Jeff had to wait while Ray finished his breakfast to shower him. Today (Wednesday) and Saturday are our late mornings when I can sleep in till 8am , if I am lucky. The other mornings are earlier. Of course with the longer evenings we also have our evening meal later so the nights themselves seem shorter. You all know what I am saying here - WHERE DOES TIME GO? Tomorrow we have some business to do, the shopping, pay some bills etc. Also Ray needs a haircut. Friday Ray has the morning minder but Scallywags are having a lunch out at a difficult venue so Ray is not going. We will have lunch out by ourselves and do something in the afternoon - maybe go to the beach if it is fine. He can sit on the sand and wriggle his toes. Can't put him in the water by myself, he is too unstable walking on sand, so sitting down is the best we can do. Maybe in the heat of the summer we will go and get the chair that goes in the water and the boys can take him into the water between them. I like daylight saving. I was born in England and liked the long twilight in summer as that is when as a family we had picnics by the river or went for a long walk, usually with my little sister in a stroller. Occassionally we were taken out on our parents bikes. I had a "saddle" on the bar of my Dad's bike, he had been a long distance cyclist and was a powerful pedaller so I watched the countryside flash by. Ah, even now I can imagine that feeling of speed as my father pedalled furiously "racing" Mum who had my sister in a seat on the back of her bike. Mind you he always waited for her to catch up. We have also sat out on the verandah together after our evening meal and just enjoyed watching night fall. It is peaceful listening to the crickets, watching the few black shadowy bats fly past. I like to listen as the day birds utter their last feeble cries and are replaced by the cries of the first of the night birds. And then the mosquitoes start to attack and we come back inside. It make a change from watching t.v. I am making plans for next week when Ray is in respite and I hope to tackle the spring cleaning in earnest. If I get Trev to move the furniture away from the walls in one room each day then I might wash down the walls, clean the windows, change the curtains etc. I might - no money back guarantees...lol. And those extra daylight hours will come in handy.

Shop like a guy??? For Ray it used to mean try on one thing and if it fitted just buy it in three differnt colors! Glad you got through the shopping spree and came home ok Stu. That was quite a marathon, your womenfolk sure have stamina. And you being willing to go again is a sign that you are recoverng well. More power to you my friend. Sue.

Wow, Vicky, shoes instead of boots. You will become a fashionista in no time! And that is part of what being young is about - so good for you. Summer in acoming here too, so it is back into short sleeves and, at home at least, shorts! Still in longer pants when going out but it is so nice to have an opportunity to bring out the summer florals and feel like a girlie girl (albeit an older one) for a while. Congratulations on the improvement in the strength of your walking and jumping on the trampoline! who would have thought that possible twelve months back? (((Hugs))) form Sue.

Thanks for the daylight saving time Bonnie, chat was almost late on Tuesday night as we put our clocks forward this Sunday so there is one extra hours difference this week, two hours next week. I'm ON it...lol. We had a mouse plague years ago, like you I hated killing them but did so anyway, self-preservation in our case, they did so much damage. So I killed as many as wanted to come into the house to reach the trap. Glad the goat encounter did not leave you with permanent scars, we need you well and happy to be our friend and guide here. Sue.

Hey Ray's still kicking along too. I am too. Above the ground and out of the flames...lol. Good to have an update from you Janice, I always wonder when someone goes silent if all is well with them and their household. As the others said the renovations sound fabulous, maybe you can post pictures of some of the rooms on the Gallery so we all get to "see" them. It is good to do something really worth while with a legacy. Good for you. Sue.