swilkinson

I don't write about my Mum much, just to say in passing that I have visited her or she is this or that. In a way the subject is just too emotional for me. I can visit twice a week and hold her hand and hug her and walk by her side but I keep myself from crying in front of her which is what I WANT to do all the time. My Mum was a wonderful woman, a warm tender person in some ways but a feisty fighter in others. She was brought up mostly by her mother as her father was absent most of her growing up life. In those days we didn't think of people as seperated they just "worked away from home". So her father who was in the Air Force just simply didn't come home on leave. He just came home twice a year and spent some time with his family and very little time with her and her mother. She and her mother lived with her grandfather and her mother worked on a farm, a large farm with cattle and poultry and pigs and fields of wheat and barley and an orchard and lots of people working it all. Her mother's concern was mostly the poultry but she also worked inside the "big house". Mum as a small child spent some time there too as her mum was able to have her with her some of the time. I guess it is fair to say it was a set up similar to those of Victorian times, the gentry and the workers who served them. Mum wanted to go into service herself and did so when she was 14, it worked out for a while but she ran foul of her boss, a High Court judge when he was "in his cups" (drunk) and was asked to leave so her mother got a hairdressing apprenticeship for her and she did six years of that. She met and married my Dad and eventually they had two daughters. Dad was a soldier in the British Army and has held a prisoner-of-war in Germany for four years. He came back from the War and found England changed so eventually he persuaded Mum that Australia was the place to be so we emigrated. Dad loved Australia, he was free of the class system, didn't have to take his hat off to the boss, could be and say and do what he pleased. Mum missed the British way of doing things, she knew what life was supposed to be like and the Australian ways of doing things were nothing like that. None the less I think she was happy most of the time. She had a home and a family and a good man to look after her and that was her world. In her later years Mum became attached to a Pentecostal church and because she played the piano and organ she became a leader of one of the ladies groups and did the Bible studies. I think that suited her, in my opinion the little "talks" she wrote for the ladies meeting were better than the sermons from the pulpit. They were more grounded and focussed on people's everyday needs. She became a great prayer and people came to her with their troubles and woes and went away feeling much better. I think that is why I became a person of prayer too. On the downside she smoked and how I hated that. She was the kind of person who couldn't be without cigarettes and woe betide someone who crossed her when she was short of money and out of cigarettes! So my saved pocket money sometimes went to get her cigarettes. I'm not elaborating on that except to say an addiction is an addiction. But she was kind and generous in other ways and so I never let that get in the way of our relationship. My sister and my Mum fell out and didn't reconcile for fourteen years. In fact my sister came to Dad's funeral and I hadn't seen her for most of those fourteen years. Now she is in my life again but sadly not in Mum's life. She says she is allergic to the cleaning products they use in nursing homes so can't visit Mum. Hmmm... I can't do anything about that and try not to worry too much about it. For some people there is a hurt in the past that turns into a black hole in their lives and can never be filled. Who knows why? I sat with Mum today and I thought about a lot of things, about the good times we had, about her ability to outrun us, out play us, how she fooled around and made us laugh until we cried. I remembered her poetry, her short stories that were never published, the music she would write and play for us but she always threw it away because it wasn't good enough, or so she said. She also did landscape painting for years and I have a few lovely paintings hanging on my walls and a few more that I alternate with those. A lot of people have a painting Mum did and gave to her friends as a token of her love for them. She had some mini-strokes and about ten years or so before Dad died in 2000 she began to show signs of something wrong. Not exactly dementia back then but forgetfulness and confusion. Dad slowly took over a lot of things that needed process thinking like shopping and correspondence and paying the bills. By the time he died he was also cooking, cleaning and doing the laundry. In the last few years of their life together her behaviour was erratic, and she could be aggressive and strange in the way people with dementia are. After Dad died I had Mum live with me for two years but I also had Ray with his stroke deficits etc and in the end decided to place her in a facilty that was dementia specific and could deal with her strange behaviours and allow her to be who she was and do most of what she needed to do. She paced round and round the corridors and still does, more slowly now but round and round and round. Is she happy there? Maybe...it is hard to tell now she no longer speaks, smiles or shows emotion. I know she is sometimes unhappy as she tries to tell me in her gibberish and when she can't she moans and tears fill her eyes and she looks like a small unhappy child. I sat by her side today and thought about how we think of human beings as sensiate and thinking beings. I wondered if that makes Mum a non-being as she doesn't have the ability to express, to show emotions, to communicate what she is thinking. I don't know if that is painful for her, I do know it is painful for me being with her and loving her as I do.

Kimmie, thanks for the advice. I saw a surge protector in a cheaper store's magazine this week so that will be one problem fixed. There are some years when it is all small expenses. You are right about better days. I just need the break to have some sleep and settle the house down into some kind of order for Christmas. (((Hugs))) from Sue.

From my expereince in chat it is not what is said that is important but what is FELT by those participating. I have never done theme chats as such but can often see a pattern in what is said. Sometimes when I have a lot of survivors in the room and a caregiver comes in with a question I am amazed by the support shown to him/her. We are all survivors in some way and all caregivers in some way so we all have a part of the answer to any question. It is posting in the forums where you get the "real" answers though as people have time to sit down and consider the questions and give a deeper answer. For me chat is just for fun, fellowship and to get a feeling of community. Sue.

As a caregiver wife big (((HUGS))) to both of you. Sue.

If you have an "accident" while you are out you survive. Ray has had a few, we clean him up, either come home or find a quiet place where we can do that. I remember it is the disease, not the person, controlling what happens. Other fears - waking up living and breathing is good but if you don't ???? As for more strokes - Ray has had five strokes 1990, 1999 (x2) 2001, 2005 and he is still here. Nearly 18 years since his first on 9th December 1990 when he was 47...life goes on. Sue.

Sue - yep, life after stroke, life after all the bumps in the road on this journey with our life partners can still be worthwhile. You are gathering the strength now for BOTH of you. Like me you will be caregiver, advocate, cheerleader and best friend. Amazing as it might seem you are joining the angel band of caregivers and your life will change because of that. A lot of your time will be spent doing what is necessary to turn life around for Jackie and give hope to family and friends. Keep up the good work. Sue.

Gary, I am glad you can be an active advocate for stroke survivors in your community. As a caregiver I am often too busy with the day-to-day chores to attend meetings etc so I know that I have a great deal of knowledge that I COULD share wit h others but just don't have the time to go to meetings and seminars. Thanks for the updates on Kyle. It is good to keep in touch with all that early struggle. I think to forget it is to let go of a valuable resousrce we might need again. Sue.

Finally got a date for the assessment. The worker will come at noon on Thursday. I know everyone is busy this time of the year but there are some government processes without which nothing seems to happen so it is important. I had a good night's sleep last night so woke up in a happier mood. Ray is all showered and dressed and ready to go off to the "party" today. It is just lunch out really but it is nice to just sit and relax and chiull out with friends so i hope that is what happns today. He has a problem with thin skin from some of the meds he takes so I had to change the sheets when he skinned his arm somewhat and we had a big area of skin bleeding. Bah!!! Humbug!! Sue.

I wrote my last blog about being "BACK!!" and our internet connection went down again, or so we thought. It seems Trev's new modem keeps getting "lost" by his computer so you have to put the disc back in and connect it again. Then you are up and running for a while! I guess there is a basic incompatibilty there somewhere so for now we will do it manually and maybe find a workaround. It is a bit like getting stuck in the mud though. We've also had a series of storms the past few days so I have been turning off and unplugging devices in the hope that all will be preserved that way. I spoke to an acquaintance who also lost her modem the night we did so it seems as if the electrical surge was definitely the cause. What a nuisance this is going to be, turning everything on and off all summer! We need the rain, just not the electrical activity locally. The rain also prompted me to get some new gravel for the driveway as we have had a wash-away problem for some time. I could have the driveway renewed but it is a huge cost and one I am not budgetting for at present. We have so many household appliances etc that are way past the date when they should have been updated and replaced. Another thing you have to leave for a while on a limited income is painting the house and as that was done some years back and the wind and elements have taken their toll so I certainly need to budget for that in the next couple of years. The sea being just a couple of roads over doesn't help, all that salty wind driven rain also adds to the damage. Ray and I have had a series of mishaps the past few days. Most of them happened through ignorance of what a person with Ray's abilities can or cannot do. I guess if you see him sitting in his chair, shaved, hair cut neatly looking "normal" it is hard to understand that your cannot trust him to remember a message, to make a decision, to comprehend a situation and solve a problem. The care worker on Friday tried to make him do all of that when he thought I had three hours of care instead of four and panicked when I didn't turn up "on time". The care worker asked for my cell number. I don't give it out, it is for family only. Once I give it out my time out would be taken up with referred on calls. I want to be "free" in my respite time off. I know it is selfish of me to want to be "out of contact" but it is the only way for me to feel 'free". With all their supposed training and support the worker should be able to make the decisions even if Ray can't. Well, that is the theory anyway. Of course Ray was very upset by the time I got home "late" thinking something had happened to me. He was then in an unhappy frame of mind for the rest of the day. As the dementia increases Ray gets more uncertain about what is going on around him so relies on those around him to remain calm. It is hard to stay calm all the time but I mostly manage it. In order to get care I have to have a current assessment from the Aged Care team in our local area. My assessment ran out in October, and I have been trying to get it renewed. It doesn't affect my present care but I can't change providers or get more care without a new assessment. It is a real Catch 22 situation as despite many phone calls no worker has come to renew the assessment. I hate ringing government departments, I always get put on hold for long enough to read a large book only to be told to "ring "x's phone and you can leave a message and he/she will call you back". We used to have an expression "you can tell that to the marines!" I guess you all know what that means. Tonight we have another invasion which comes with the stormy weather. Those small winged insects we call "thunder bugs" or "minute flies". They can crawl in through the flyscreening on the windows and doors and soon form a cloud under the lights. They only seem to live for a day so in the morning the white surfaces are covered in them. Thay usually appear about late January so they are early this year. Another joy of living in a lovely climate close to the coast. Tomorrow is another day, the woes of today will be forgotten and a new batch of troubles will be set to take their place. No two days alike here. On 9th December it will be 18 years since Ray had his first stroke. I have been taking over the tasks he had to do in the house, the yard, with the family etc since then. Some days I am tired and drag my feet as if I am stuck in the mud. I know there are stars out there, some days I just can't see them.

Trev has one computer up and running, HIS, but he has loaded flashplayer and I am allowed to use his computer to do chat. So "I"M BACK"!!! Well, that is the good news for tonight anyway. Ray and I have just been out to a Christmas/end-of year do. Our old friends from Apex40 were a fairly rowdy mob tonight, but we love them dearly. We joined this group 23 years ago so we know most of the members well. Some of course don't respond to us as easily now and there is some awkwardness in that but most are great people to be friends with. Another member of the group had strokes two years ago so he came tonight in a wheelchair, escorted by his daughter as he is a widower. We hold our meetings in restuarants and now because of Ray and Lyn someone always checks first to see they are wheelchair friendly. Our Apex40 Club, as a group, have supported us over the years since Ray's major strokes in 1999. They arranged for our shower room to be built. The other bathroom contained a bath and a small shower cubicle which was nowhere near big enough for the shower nurse or me to walk right around Ray, which I think is the only way to give him a really good shower. Now it's easier and quicker to shower him. I think it gives Ray much more dignity, he sits and we work around him so he doesn't feel like a sack of potatoes being lifted and pulled around. Ray's life has changed since his mobility was compromised by the broken pelvis, I guess he feels more of a burden now, so anything that eases that feeling is good. I've started my Christmas shopping. Ray and I are pretty frugal as we live on a fixed income but as long as I shop carefully we manage well. I was brought up to look for bargains and make the most of the money we have so we don't struggle, we have a good life, just not a self-indulgent one. A lot of folk tonight were talking about the lavish entertaining they will do between now and Christmas. Once I would have found myslf envying them, now that is okay, I don't feel jealous or envious. I know Ray would no longer deal with a busy, busy lifestyle so I am content to just do the things he is capable of doing. Trev had his birthday today. I bought him a nice dress shirt to wear out if he has any "special" invitations. He came home as I had just got onto the computer and found a recipe for a "Chocolate Cake you microwave in a mug" so I tried it out and told him I had "baked" him a birthday cake! We cut the mug cake into four and sang Happy Birthday to him. He seemed okay with that. We'll take him out to dinner over the weekend sometime. Sometimes we forget to count our blessings, we are too busy looking down at the mud at our feet to appreciate the stars shining over our heads. I am blessed with friends and family that I adore. I could have lost Ray in 1999 and he is still with me, a little battered and the worst for wear but still by my side. I am so lucky. I have three children and five grandchildren. I know many people have no family so I am grateful for mine. I am not always in total agreement with them, I can disagree with what they say and do but I really love them. There was a saying when I was young: "Kind hearts are worth more than coronets". If you understand that against the British background of the plebs and the aristocracy ( the coronets) then it makes more sense. I think you find the best and kindest hearts in some of the lowliest places. Today when we were shopping a little boy dropped his balloon, his mother burdened by shopping, ploughed on. A Downs sydrome boy came running after them and returned the balloon to the crying child. A knight in less than shining armour but a fine example to all of us. I must get to bed, I never know when Ray will wake me for some reason through the night so value those first few hours. It is one of those things caregivers have to get used to, a part of the job. Today has been a good day and I look forward to more of them to come.

Jean, I think I come here after so long particularly for the blogs. Strokenet ever since I first came here in May 2005 has had a real community feel for me. Reading the blogs for me is like talking with the next door neighbour or getting a letter from a cousin. I have got to know people so well and to really like them too. Got to the Gallery to see a photo of Babs(Babsz) and her husband, stroke survivor Eddie sitting with me out the back while Trev cooked us a barbecue. Without me meeting her here that would never have happened. That's the power of community for me. Glad to read your blogs and know that you and Don are doing fine now. (((hugs))) from Sue.

Janine, welcome back! I have been on here since May 2005 and still find it interesting, posting, reading, blogging so I stay on the board and enjoy the friendships we create here. I'm glad Larry and you and Cecilia are proving a good partnership, it is good to have a partner-in-care to take the load off for a while. Keep on coming back here, this is not just for when you are "needy" it is for anytime you have the time to drop by. (((Hugs))) from Sue.

Stu, it has been nine years sice Ray and I both retired. Sometimes like you I dream about work but it is more of a nightmare, I am always runing round in circles not knowing what to do ( a frequent occurrence in a Social Security ofice). I take it to mean that I can't go back there. I try to keep up a routine for Ray and for me as that becomes a substitute for work. That means though that on Monday I will see one set of folk, Tuesday another, just Ray and I on Wednesday etc. It also means I do see people on a regular basis which is quite pleasant and does result in some friendships. I think we need a wide circle of friends and acquaintances of all sorts to keep going and the confines of stroke survivor/caring for someone with a stroke robs us of that freedom to move in so many circles. Look around and join something like a seniors centre, maybe volunteer wherever there are a lot of people to interact with. I don't know if you have volunteers in schools and hospitals there but both have a lot of workers and other volunteers. I find church, our Lions Club and a couple of other organisations I belong to work for me. Sue.

I wrote a blog straight from the heart last night, typed my emotions onto the blank screen and then lost the lot. Trev has my computer almost up and running, well running slowly. I need a new filter now, we replaced the modem that took the brunt of a lightning strike on the transmission box at the corner of our street during a mighty thunderstorm a week ago. Trev was in the middle of rebuilding his computer at the time and the surge that resulted from the strike killed off that tower. He bought a new tower and that still seemed to have problems. After ringing our telco , our ISP etc the problem seemed to be the modem and the ADSL filter, we replaced the modem and tonight will replace the filter. Fingers and eyes crossed! You know all those emails that promise you seven years of bad luck if you delete them? I think I have deleted one too many! Ray has some more problems, the incontinence has moved from once every few days to twice a day. We blamed the new medication, Ebixa (Namenda) at first but the problem went away for a few days and then came back with a vengeance so I am doubtful of what is causing it. I know he is feeling miserable because of it and I am sick of cleaning him up and giving him extra showers. I know the change of seasons doesn't help as we are alternately having warm and humid days and cold and wet days so it is no wonder the older members of the population who inhabit the circles in which Ray moves, are coming down with all sorts of minor diseases. I have that "let's wrap him in cotton wool" feeling coming on again. Ray did go to Camp Breakaway but had a morning when everything went wrong, including a bout of incontinence before he was able to get out of bed. I had a phone call about that today as a "report" was put in on his problems. He will be able to go back there in the future but with a "one on two" minder to make sure he is safe. I knew this was going to happen but it is sad when someone has "special requirements" marked on their file. As stroke survivors know, once you are labelled you are treated differently. I took advantage of my three days. I used one to do some extra chores at home and used one to go out to lunch with a friend. After lunch we went to the movies to see "Quantum of Solace". It was not really my kind of movie but it certainly was a distraction from the every day. James Bond, whichever actor is curently playing him, lives a life that is nothing like mine. And that is good. The dangers of my job are domestic, the dangers of his international. Both of us struggle to do our best. We had the delight of our grandkids on Friday. Alex and Oliver caused the usual chaos. Those two little boys have so much energy. This Granma is racing to keep up with them. I managed to get Tori to stay overnight and we had a busy Saturday of doing the stuff she can only do without her brothers around. This included colouring in, building a block tower, jumping on the trampoline for ten minutes of uninterrupted bouncing etc. In the afternoon we took her to an outside mall where there is a water feature and she was able to paddle for a while. I forgot to put sunscreen on her and she got a bit pink on the shoulders but she loved the afternoon out. Ray managed to forgo his afternoon nap and came with us so it was a good time for all of us. We had a walk around the inlet and it was so peaceful. When school holidays come that will all change so it is nice to go now before the influx of tourists hit our lovely area. I've had a couple of sad phone calls lately about old friends with health breakdowns. I don't know why but it always seems to come just before Christmas, doesn't it? And I want my Christmas this year to be bright and cheerful and one to remember. I know we will only have lunch here with our local family and then probably Ray and I will be alone for the rest of the day but it can still be a light-hearted, happy time. We usually get some phone calls from friends and ring a few ourselves so there is that tenuous contact across the miles. I guess Christmas is built up to be such a "family occassion" that the reality can be somewhat of a let-down. Only a month till Christmas Day and so much to do. I'm sure it will be a joy to shop for gifts...well hopefully. So it is back to normal for a couple of weeks, then Ray has a short time in respite ( yes, it finally got worked out so he can get the room he always has) and then the run up to Christmas. I wonder sometimes where the time goes..... it's a sign of age I suppose. I am still so missing you all in chat. Hopefuly next week all my computer woes will be behind me....

Today has been a day of frustration. I feel as if I am walking in glue and not getting very far. I know we all have days like this but why is it happening to ME!!!! Ray's new medication is giving him diarrhoea. He is supposed to settle down "soon" so the pharmacist told me. It is an "initial reaction". It is also a nuisance as I did laundry every day this week! Luckily the weather is warmer now and it has been fine with a nice afternoon breeze to waft through the clothes. I bring the sheets in ready to go straight back on the bed. So to Ruth and all those caregivers I have given advice to on such issues I finally understand, truly I do! My respite provider rang me yesterday afternoon while I was gardening. By the time I rang her back she had left the office. Another woman rang me today to say my respite care in December which is only a week starting 8th December has been cancelled! WHAT? HOW COME? WHO IS DOING THIS TO ME? ETC. I finished up in a flood of tears imagining Ray still having the present difficulties and me coping without respite till heaven only knows when. I care for Ray the best I can and will do so as long as I can but honestly I need my little breaks so PLEASE.... Ray's care provider rang me to say she can't provide the two hours extra care for Ray tomorrow so I would just get an extra hour. I have a lot of business to take care of as well as the visit to Mum so I was hoping for five hours off and now I just have four. I guess I will do most of what I need to do. It is the shortness of available time that leads to me rushing decisions and making the wrong ones. And that, as most caregivers will tell you, is what leads to frustration. A caregiver never gets all the time he/she needs to do all the chores that need doing. It is a never-ending story and another reason for a caregiver finally putting his/her loved one into full time care. I have been leaving messages about Camp Breakaway as Ray was supposed to be there Tuesday to Friday next week. The Camp he and I went to was for Carers, this is his usual Frail Aged Camp where he will see a lot of the people he usually goes with. His booking had not been confirmed. And again I missed a call and found a message saying he is not booked in! OH DEAR! more floods of tears. Luckily at that point the person I had contacted first rang back to say she had passed the message on to another worker and Ray WILL be included in the Camp so someone will come out to do the paperwork on Monday...PHEW!! The respite care provider just rang back to say she is working on moving someone else who is having respite to another room so Ray CAN have his week. But that is just maybe until it is confirmed. Another cliff-hanger! No wonder my fingers are sore from hanging onto this cliff. I just hope there is a safety net down below in case I fall! I certainly feel like letting it all go right now. I doubt all these agency workers know what havoc they cause in our land-locked lives. I try not to be a "fair weather caregiver" as I've known some people who are. They are happy looking after whoever is the recipient of their care until the first hurdle comes into view and then it is all too much for them and they collapse and someone else has to take over. I try to battle on and fight through whatever is bugging me right now. Mostly I do okay and within a few days life goes back to normal again. But some issues like the incontinence keeps re-appearing to make my life miserable. I say I choose to stay and look after Ray as I wake up each morning. I'll try to go on making that same choice day after day. I was never raised to be a quitter. So maybe a cup of coffee, a chat with a friend on the phone for half an hour or maybe an hour reading a book will help my day to come right again. I will worry about tomorrow tomorrow Today I will just trust that life will come out with the good days outnumbering the bad days and I will be able, with some help, to cope with whatever lies ahead.

Vi, you are such a powerful woman, I mean that in the spiritual sense, to me you are such an overcomer. When I read this I know that as a caregiver I have very little to complain about. I guess when I get irritated with Ray I remember the same thing. I have the use of both my arms and legs, he doesn't, therefore I should be counting my blessings, not complaining about my lot in life. I am glad you can see the good in life. We appreciate you being here. (((hugs))) from Sue.

I wonder about all this. At the time the experience is happening life is very hard. I find this every time Ray has another stroke, seizure or an episode of some kind. I work frantically, I pray fervently. I do come out the other side; "so far, so good". But as Mr Hillman says LATER we look back and see how far we have come or what obstacles we have overcome. It is true what does not kill us makes us strong. Unfortunately it does kill some on the way. I am a little pessimistic today as a good friend of mine, a devoted carer to her stroke survivor husband has just been diagnosed with cancer. That is a BIG mountain to climb. The carer sometimes fails to look after themselves. I am aware sometimes of the strain we all go through either through our own illness or disabilities or through being a carer for someone who has gone through so much. I'm glad Tootie survived so well and that she has her family and you to take care of her, it is a lot too much for a single caregiver. Remember you are in our prayers too. ((Hugs))) from Sue.

What a pleasure it was to have guests from Oklahoma City. Trev and I picked up Babs and Eddie on Friday around noon from the Visitors Centre in the heart of Sydney. She and I recognised each other immediately and Eddie stood by with a real grin on his face as we hugged each other enthusiastically on the pavement. We had a drive around some of the shoreline trying to get glimpses of the Harbour as we went. Trev got pulled over by a policeman ( long story) so he is not happy about that but it happens to us all in a strange place where the traffic directions etc are not always clear. I won't go into a minute-by-minute description of what happened for the 24 hours or so they were here but if I say we did a lot of talking, you will all relate to that I am sure. And Eddie, at first shy with this family of strange Aussies, soon found he and Trevor had a lot in common and talked and talked and talked and talked.... On Friday when we got home we had afternoon tea ( yes, Babs drinks tea!) and then Ray took a nap and Babs, Eddie and I jumped into my car and did some local touring. They dipped their feet into the Pacific Ocean a few miles from here at Toowoon Bay, one of my favorite local beaches. It was a treat but the water temperature is still too cold for swimming as yet so we only went into the water up to our knees. Well Babs got wetter than the rest of us...lol. We drove around the suburbs and beaches helping them get an idea of what our area is like. I always want to show our visitors as much of the local scenery as I can, it is so pretty around here. Babs was wanting to know: "What bird is that? What is that tree? Do you know the name of that flower?" etc I know she was just enjoying so much being here. We've been talking on chat here for two years so she knows a lot about where we live etc but it was good for her to see us "in the flesh" and for her and I to be able to talk for a while. I wish it had been three or four days instead of just the one as I so enjoyed the visit. In the meantime Trev had a barbecue for our evening meal well on the way when we got home and there were lamb chops and steaks and sausages and kangaroo steaks ( you have to try the local delicacy) and salads and side dishes. I did manage to burn the apple pie for dessert as I was talking and talking and talking and talking... On Saturday we went to a local shopping centre (mall) for Babs to go online send a message home with her arrival date etc. We had three computers between us and none of them working. Mine broke down last Tuesday so apologies once more for those who came to chat and found me missing AGAIN! I am working on a friend's computer as I send this so once more do not know if I will be back in chat on Tuesday night. My repaired computer broke down again and not a thing we did to it would let me back in. OH SO FRUSTRATING! Babs and Eddie returned to Sydney by train, I would have loved to go back with them but I didn't have a minder for Ray. That is just another hard thing about being a caregiver I guess, the limited time you are able to spend with your friends. They fly back to the States on Monday afternoon. I hope they enjoyed their cruise from New Zealand, their stay in Sydney and the 24 hours they spent with us. So, all of my friends here on Strokenet, start saving, there is a bed waiting here at Sue and Ray's place. We will throw a kangaroo steak on the barbecue, plump up the pillows on your bed to make you comfy and welcome you with open arms.

Ann, for sure there in another angel in heaven now. I am so sorry that this wonderful sister-in-law Choe has passed out of the visible section of your life. As we know no-one who is good is gone forever. I too wonder sometimes how some people, humble in themselves are yet such a powerful blessing to others. Condolences to your brother and his family too. (((Hugs))) from Sue.

Champion, that's you mate! Ken you ought to be proud of yourself, you have struggles so hard and now at last you are seeing results. Good on you mate! Sue.

Hi Marie Sorry I missed your first chat. I once used to have time to go to one other than mine but as it is mid-day Monday for me for your 8pm Sunday chat it does make it a bit of a challenge! However I will note it for a future rainy Monday. Theme chats used to be held occassionally on Friday or Saturday nights - I loved the Pyjama Party we held one year. It might work for Sunday nights though....hmmmm. You'd just need to advertise the theme a long time in advance so people were prepared for it and maybe designate someone to take newbies into another room if they needed special attention. Keep up the good work. Sue.

Yes, I agree with Donna, it is better to have had that love than not to have it. I was so happy for you when I read your last blog about meeting a great lady/companion. We all need that special someone so I'm sorry that family and distance seperated you. I will be thinking of you. I hope there is another great lady out there waiting for a special someone like you to come into their life. Sue.

Hi there my friends, I've misssed you all. Ray and Trev and I have been to Queensland as planned. It was not too bad, a few awkward moments, because of Ray's dementia, because of my focus on Ray, because of the generation gap and different expectations, but on the whole not too bad. It all went pretty smoothly with Trev and I sharing the driving. Although we went to two motels we had been to before the accommodation was NOT disabled friendly and that made it very awkward. But we managed. It was good tonight to shower Ray in his own special shower room and be able to shower him properly. It certainly makes you count your blessings when you have been "making do". Travel is fine but coming home tonight was good too. BABSZ from Strokenet and her husband are on a cruise of New Zealand and three ports in Australia so we are due to meet on Friday when the ship docks in Sydney! She has sent me regular updates of what she and Eddie have been up to and seems to be having a great time. She and Eddie are walking a mile a day around the ship every morning. How is that for energetic! I am sure I will have some pics to post of us together so do stand by for that. The trip to Queensland was for us to catch up with Ray's brother and his wife and to visit with some old friends which we did. Both of the men have had surgery for cancer and both thankfully are doing very well, much better than expected so it was reassuring to see both of them "in the pink" of good health. I guess I am a good long distance worrier. I like my brother-in-law Les who is the opposite of Ray, noisy where Ray is quiet, cheeky where Ray is courteous etc. The time we spent with him was great, all the old stories trotted out and some teasing. Ray can't remember a lot of the stories now but seemed to enjoy the visit. The weather was brilliant while we were away, the days not too hot. After spending two days visiting I took Ray to one of our favourite spots, Bribie Island. Bribie is a long sand island attached to the mainland by a long causeway. I guess it has grown from once being just a sand dune in the middle of a large bay. It was first settled in the 1880's and is now partly covered by tourist resorts but still has a lot of open space up one end including lovely walks along the Pumistone Passage, the waterway between it and the mainland. As we arrived at lunchtime we enjoyed "fish and chips" sitting at a table near the water and watching yachts and small boats with fishermen and the antics of seagulls etc. A few hours sitting by the water is a real restorative for me. On the way home, yesterday we visited some old friends from our Karuah days who now live on the north coast and today, our son-in-laws mother. I knew she would be having a sad time as next Wednesday is the first anniversary of her husband's death and she is of course still mourning him. It is so hard fter 50 plus years of married life to lose a much loved partner. I guess there is no "timeline" for recovery. She was very pleased to see us. Trev said he enjoyed the trip, he had thought of it as taking his Dad to see his brother, maybe for the last time as Ray does not travel so well now. I don't know if this will be the last time but know that travelling with a person who has stroke deficits plus confusion caused by the dementia is hard. Ray was brilliant in the mornings, not too bad of an afternoon but obviously more tired than at home where he can have a three hour nap. And by night-time he was really struggling. He didn't really want to go out to eat or battle with a shower in a bathroom not set up properly and had some problems with simple things like light switches and arranging bedclothes. I really missed my kitchen! It is wonderful how quickly I can do tasks like making up Ray's thickened fluids at home and found in a motel or someone else's house that the job takes twice as long. And living out of a suitcase is harder too as those elusive socks and hankies and underwear that fits always seems to hide in the dark corners eh? I did manage some laundry while we were away so that made the fact that Ray and I shared a suitcase manageable. I will still have a pile of dirty clothes to attack tomorrow so I am praying for a sunny day with a light wind so I can sun-dry. Now to do a bit of a spring clean before Babs comes. I am really looking forward to that. Babs and Eddie and Sue and Ray, think of the chatting! How good is that?

Donna, you are allowed to make "mistakes" like the rest of us. I agree with Asha, there was a reason for your move and your life will be richer because of it. You need to look to the future as well as memorialising the past. There is no easy way to lose a parent though, whatever the stage of life you are going through, and you have to grieve. I'm sending send bunches of virtual flowers and heaps of hugs to ease your pain in the upcoming weeks. We are all here for you, friends to the end. Sue.

Just got back from Camp Breakaway and I must say it was duller than usual. I guess the rain and gale force winds had a lot to do with that. All the walks and outdoor games and a picnic on the lawns planned for yesterday had to be abandoned. And would you believe that today the sun was shining, the sky was blue and we all headed for home. The dementia camp is not as jolly as the usual Frail Aged Camps as the "clients" are less able to participate. So we had quiet days and just the entertainers at night. I enjoyed it all, I managed to catch a couple of naps and that is always good. Ray as usual was the pampered pet and blossomed under the tender loving care of the volunteer carers. He was frequently clutched to the chest of some large lady to show she appreciated him. At my age the jealousy factor has gone but to him it is an added bonus, we don't have a lot of people in our lives that "love" us now. On Wednesday, despite the damp conditions some kids set fire to a builders rubbish pile almost opposite the camp and the nearby pre-school children and staff got evacuuated to the hall. That caused a lot of fun as the littlies milled around the old folk and four small tots arrived in a cot on wheels. We had had the older kids entertain us that morning with a couple of little songs they were learning and they were not at all shy around the camp guests so it was a nice diversion for us all. The flames from the burning packing materials in the dumpster sent clouds of horrible black smoke into the damp grey sky but it was much more frightening in appearance than in actuality. Today is Friday and the Community transport bus has just picked up Ray to go to Scallywags, I'll go to visit Mum when I had finished this and then do a small shopping session. I don't need much as we are leaving for Queensland on Sunday. I am looking forward to the trip as the countryside should be very green after all the rain we have had. You know when the sky is blue and the birds are nesting the rest of us feel pretty good too. Ah! Spring!, the bird is on the wing! (I forget who wrote that, if I did I would acknowledge it..lol.) The change in scenery as well as the break from home will do us all good. The caregivers at the camp had some lectures during the week. It was actually a Carers Camp, partly funded by the government for Carers Week. I didn't learn a lot from the talks, I think we learned more from the interaction with the other carers. Like stroke dementia affects each individual in a slightly different way so although we could see the deficits how to deal with each individual's progress into the illness is not clear cut. I think it is harder for the male carers than the female ones. One older man said to me in tears: "She is supposed to be the one who looks after me." I guess that would be seen to be the normal way of things to him. Support is so necessary to go on with the caring role. I am so grateful for what I have. Sure people let you down and some who "should" come to our aid don't, but that is beside the point for me. I access what care I can, I'm grateful for what I receive, I go on striving to give Ray the best care possible. That is what it is all about for me at this stage, nine years down the track from his major strokes. I still felt sorry for those couples who, it was evident, are still wishing for a miracle, or that they would wake up one morning and find it was just a horrible dream. We can all say: "There, but for the grace of God, go I."