swilkinson

I had my Mum here with me with mild dementia, she had outbursts like Mike and the caseworker who was in charge of her respite said not to fight every little battle. So if she didn't want to shower or have her hair washed let it go till tomorrow. Choose a time when she is calm and then say:"How about a nice shower and I'll put your favourite blouse on you and get something nice for dinner?" and that did seem to work. With a brain injury there seems to be a "wind up handle" somewhere so the more anxious, uncomfortable, unable to perform the person gets the more abusive they become. I guess without being able to run away from the situation I might do that too. One way to approach it is to prepare Mike well in advance for what is going to happen, like washing his hair, so he is ready to co-operate.Don't do anything you know might cause him to start this behaviour when your children are around. And remember Mike will have good days and bad days and in response so will you! All caregivers think at some time that they have made a mistake in bringing the person home instead of putting them into a care facility. I know I do. And keeping them home through the ups and downs takes its toll. It is a situation I review every day. And after seven years I can say: "so far, so good". Hang in there, you will have better days when being with Mike wipes out all other considerations. (((hugs))) from Sue.

JoeAnn, tell your Mum to leave the cigarettes in the car or at home when she goes to visit your Dad in the hospital and then she can say:"Sorry, honey, none on me." I know he needs to see her more than he needs the cigarettes. And his need of the cigarettes will fade too. Life after a stroke is not better or worse, it is just different. Slowly both the survivor and family learn to cope with the new normal. People in the family adjust to having to help the survivor make a new life. Your Dad's memory may improve, his brain is still "shell shocked" by what has happened so maybe he is not thinking clearly. And there are a lot of things going on as part of his rehab that makes him confused about what day it is, what is going on and what he had for breakfast. Tell him to go easy on himself and just live one day at a time. Being any age and seeing a parent ill, distressed or altered for one reason or another is not easy. At one time I had both my parents and my husband home from hospital after major strokes all dependent on me and it was hard. But it does make us stronger, more compassionate and in a way wiser for the experience. You will be much more mature than those of a similar age, and that is one good thing that comes out of all that is happening to you right now. Glad you found this site and allowed us to be a part of your struggle. Sue.

Trev has a casual job cleaning train carriages, he uses a carpet cleaning machine of industrial proportions to clean the carpetted floors. Last night he brought it home and spent a couple of hours this afternoon cleaning the most walked through areas of our house. What a joy to come home to a house that smells fresh and clean. Or maybe that was just the huge fan blowing air through the house to dry the carpets out? Whatever it was it was definitely the smell of Spring! Anyway it was a lovely thing for him to do for us and made the rest of my housework soooo much easier. Sue.

This has been another week of getting used to what will happen when Ray changes over to insulin. I know a few people are dealing with insulin dependent survivors right now and probably wonder what I am making a fuss about. But for me it is a big deal. I know it will be for Ray too but I will be the one testing his sugar and working out the dosage and giving him the insulin. And to me, with no nursing background, it does seem like a big responsibility. So I am finding out as much as I can about how to balance his blood sugar better and make sure that I know just what I am in for. We went to the doctor again today, that is our fourth time in three weeks. He is trying an experimental drug on Ray that is supposed to boost the effect of the other two diabetic meds he is on. It may take up to four weeks for the effects to show up though and this is only the end of the first fortnight and it has failed to improve it more than single numbers so far. We have to go back again in a fortnight, get a blood test in ten days and go back with the results of that. It seems such a slow and drawn out process but I think the doctor is waiting until he thinks Ray is used to the idea before making changes. He did change one med this week and said he will change another in a fortnight according with what the kidney specialist wanted, but is only willing at this stage to change those two medications. I made an appointment today to see a dietician as I want to even out the effect of food on Ray's daily cycle. The Low GI diet is pretty well established here and she is going to help me through a process she called partnering where I will decide to put foods in groups to make it easier for me to work on menus. If I know I can serve mashed potatoes as long as I also have sweet potato and sweet corn on the same menu it makes it easier to find a quick meal. I know a lot of diabetics don't eat well and this aggravates their health problems, so I don't want to fall into that trap with Ray. As a caregiver I find the thought of so much responsibility scary sometimes. It is like being the mother of a new born in some ways. Everything the baby needs the mother provides or supervises. I feel like that with Ray's treatment sometimes, particularly now he has mild dementia and really isn't capable of making decisions on his own behalf. The doctor asks me the questions as Ray cannot always articulate how he feels now, or what he wants to ask the doctor so we discuss it beforehand and I ask the questions so that both Ray and I benefit from the answers. I just read an article in a church paper called;"Handling the Bad News." The title sounds pretty ominous but we all get bad news from time to time. Most of it starts:"I don't know how to tell you this but...." so the article talked about calling on your own strengths, the support of family and friends and specialised support groups in the face of long term illness like cancer. Of course it went into a lot of religious stuff too but on the whole the answers could have been reprinted anywhere. I find these articles useful as they re-enforce the way I have chosen to handle Ray's long term illness. I am grateful I found this site. I have made some friends who are in a similar situation to me, caring for husbands over a long period of time. Through this blog and chat I have been offered a lot of advice and support in a way that I couldn't have imagined previously. So now I chat to people in the USA as if I have known them all my life. It is such a bonus especially as it is often at a time when I would hesitate to phone anyone here for companionship or to ask a few questions. And as this is specifically a stroke site it is so easy to ask difficult questions without anyone feeling uncomfortable or embarrassed. Not sure I could discuss Ray's incontinence with our friends in real time! Of course we also have friends in real time who offer us support as well. Some of them I don't hear from for a while and they suddenly resurface. Ray got a small package in the mail yesterday. I assumed it wa for his birthday but when he opened it up I could see I was wrong. It was a framed photograph, not a particularly good one of Ray and I taken in 1988!! I was quite pretty back then and slimmer too. The sender was a distant cousin of Ray's who said he had found the photo, rung his brother in Queensland to get our address and sent it to us. I rang his brother, got the sender's phone number and he and Ray had a chat and caught up on each others news. It was so nice to have that happen right out of the blue. So not all our news is bad news. Some of it is pleasant and reminds us of the goodness of life. So it is wise to accept life as it comes, the good and the bad, not anaethetising ourself from the pain but where possible living with the pain and confusion of living in order to taste the joys that come our way. No ups if there are no downs I guess. I am not always good at this but will try to accept life as it comes.

Susan, speaking as a caregiver and not a survivor I think it is because it is such a long haul that we all get tired. There doesn't seem to be a road map for the future and I sometime suspect that what happens is obscured by what I think ought to have happened and so I don't give full credit to myself for what I do achieve so much as castigate myself for what I have not achieved. I think this requires a different kind of thinking as the situation we are in is like a long, slow journey. On that life journey, what you do each day does not matter so much as what you do over a longer period of time. So new enterprises and new developments are not as important as finding fulfillment in what you are able to do, the reading, the work you do here, the keeping together of home and family. There was a way of looking at the sacredness of everyday tasks that keeps me centred. It is not what you do that counts so much as doing what you do to the full extent of your ability. So the task itself is important. This eliminates a lot of the guilt, if you do a few a tasks well and then you rest from your labours. And leisure time should be just that, a way of resting, of renewing your energy for the future. I know this all sounds like the philosophy of the medievalists and a lot of it probably is as I've studied them a good deal. But that is my answer to your "Faith Crisis". Sue.

Wow! I was so surprised when I got up this morning and logged on to Strokenet and my log-in was wrong! What is this! I can't log in, oh no! But it wasn't bad news and once I had accessed my messages on Hotmail, there was the reason. I had been accepted as a chat host on Strokenet. So followed instructions, changed my password and became a new person - hostsue. During my lifetime I have been a lot of things. I started my first voluntary job at 16 as the secretary of Ourimbah Teen Club. We lived at Ourimbah, a little village on the Central Coast inland from where we live now. It had a hall that had been a Nissan Hut . The hall was moved from where it was used somewhere in Sydney for storage after the second World War to Ourimbah to take on it's humble job as School of Arts and the equivalent of town hall. As secretary I was part of an executive that not only ran meetings but dances and fund-raisers too. Our teen club held fortnightly dances, though in the rock and roll era we were still doing swing waltzes and barn dances. But we were happy, meeting our peers socially, raising a little money for charity. The other two Saturdays I danced at other halls including on the Mountain where I met my husband Ray, he could really dance in those days. I have been employed in several service industries, including the auto industry, in local government, the public service and did a stint as a Tupperware lady. With each job I re-invented myself. There are a lot of facets of our personalities that we stifle in one job and bring out in another. The quiet secretary can become the stand-up comedienne because in selling Tupperware to roomfuls of people humor really helped to put the sales figures up, and if they like you, they ask you back! I also worked in many community organisations as all the country mothers do, raising money for schools, Scouts, church, Daycare, and other organisations that need a fund-raiser. I held a lot of offices in 25 years, so was sometimes Madam President and sometimes the person rostered on to wash up! A lot of people will identify with me on that one. When Ray had the strokes I was working part-time in paid work and part-time for the church, usually six days out of seven. Coming home to look after him put me into a whole new catergory - caregiver. I've done that job to the best of my ability for over seven years. I said: "in sickness and in health" as one of my wedding vows and that is it for as long as I am able to manage. With Ray's condition deteriorating mainly due to the diabetes I don't know how long that will be. But as long as I am able. So as hostsue I will be doing Caregiver chats on Tuesdays nights (when I am available) and acting as a cheerleader and supporter for those who need it, caregiver and survivor alike. I guess the saying is true: "the more things change, the more they stay the same." I am the same person I was yesterday - I just have a new name.

Diane, you are coming along fine now. Keep that confidence going. It is a long haul but oh what joy being able to walk on your own will bring. I was so happy when Ray could finally walk unassisted, it made me cry. And it is such a difference to see him stand upright, at his full height! He walks a bit erratically sometimes, but he walks. :cheer: It is hard to wait for something to happen, we were like that with our front handrails, waited almost fifteen months for them. What we didn't know was that the entire staff (one man) had had a heart attack and there was no money to replace him. So we could only use the back door all that time. But little by little your life will go back to a semblance of what you want it to be, just keep courage my friend. Sue. :friends:

Now I'm going blue in the face holding my breath waiting for the details of how the weekend went! Sue.

You will like the person you are now, from our few times in chat together I certainly do. Sometimes in a new situation we have to put aside the old information in our brain and take on new information. Ray and I have both done this in the seven years since his major strokes. I have had to learn to do a lot of new things and he has had to learn to watch me do things badly without critising what I do. I am glad your husband and family are supportive. Boost their efforts by giving them thanks and praise as they deserve it. You will adjust to your new "normal" or at least come to tolerate it. Sue.

It is always best to look at the good in every day for your own peace of mind. We used to sing that song: "Count your blessings" and on a bad day that reminds me that life is "speckled with good and bad things" as you said. I am glad you can have Mike's Mum in the house now in spite of what has happened. I have a friend who tells lies a lot, I think of that as his weakness, he wants to re-invent himself all the time, to look more important. You will be glad later that Mike still has contact with his family. Sorry you went through all that angst with your cousin and the stolen credit card, what a hassle on what should have been a much better day. I hope today is much happier for you. Tell Mike "Happy Birthday" from Ray and me. And give him a :friends: big hug. Sue.

Mel ((((hugs))) from me too. You are dealing with so much, both physically and mentally that it is no wonder you are feeling overwhelmed. I hate anniversaries of the deaths of people I love too. But it is also a time to celebrate that we are alive, and they will be alive in a way too all the time we have the breath to tell their stories. I joined Lifeline, which is the same kind of service as the Samaritans in America, because a friend of mine committed suicide. I worked on the phones for eight years doing a six hour shift once a week. I wanted to do something to help people feel more empowered so they didn't get to feel that feeling of being lost and alone. On the night shifts in particular people were thankful just to talk and relieve their feelings of loneliness. That is what we are here for too. I hope that some of what I did helped people go on living a life that they found worthwhile. (((hugs))) and prayers too. Sue.

Yesterday I was still in a bad mood. Things had gone from bad to worse. I had tried to brighten up for Ray's birthday. I had decided we would do a few things in the morning including going to the doctor and going out to breakfast. Maybe we should have had the breakfast first! Instead we went to the doctor first, he read all the reports but still did not have the recommendation from the kidney specialist so we have to go again same time next week. He was disappointed when I told him that the kidney specialist had recommended insulin. He doesn't want to go there with Ray if we can help it. And he said if he does decided to alter Ray's tablets it will be one a a time, not all at once. In a way that made me feel we were still in control of the situation. We can take the advice of the specialist but combine it with some common sense. The breakfast was good except that Ray, like a lot of stroke survivors, sees a large plate of food and promptly loses his appetite. I explained to him that this was the equivalent of breakfast and morning tea, it being ten o'clock by then. He still shook his head so I asked the waitress for a spare plate, cut up half of the breakfast and moved it across to the other plate. I would rather have him eat half of the food provided than balk at eating any of it. I can eat scrambled eggs and as she puts garnish on each plate it was rather like eating scrambled eggs with salad! I had told the barber that I wanted Ray to have a haircut after the breakfast but when we got back there his room was full and so we couldn't wait. Ray had to be toiletted etc before he went off to Scallywags. I was disappointed as it is hard to fit extras into next week which will include the funeral of an old family friend. My free time while Ray was away at Scallywags had to include a visit to Mum as she had had another fall, they seem to be coming regularly at a couple a month now. She had a bandage around her head and over her forehead where she had yet another cut but seemed quite cheerful. I stayed with her for over an hour as I had given up other plans to get there. Ray got home from Scallywags and had another "fecal event". OMG, what a mess. Took me an hour to clean up, get him showered and into bed, I thought that the best place to put him for a while. It is getting harder for me to clean up now, as if it has a cumulative effect. I know it is not his fault etc. But it is still practical problem that we need to overcome. By then Trev was back home and wanted to cook a special meal for Ray's birthday dinner but I persuaded him to just cook some steamed chicken and vegetables, a bland meal to soothe an upset stomach. Wasn't very "special" but didn't stir up any more trouble. Why have I called this baby love? Well tonight we had Alex and Tori while their Mum and Dad went out to dinner. I wasn't going to do it yesterday, I was feeling too sorry for myself, too hard pressed. But this morning I decided I would do it. Our daughter-in-law doesn't get to go out much without Alex and needs a break too. I remember the first couple of child free nights after having a baby, it is heaven. And it was the right thing to do. This morning we spent all morning at our church fete. It was cold, blustery and wet but it has a large covered area between two buildings and a lot of people still came and bought. We had morning tea with some of our friends from our last church who had come to support us. A few of the new church members said "hello" and smiled at us, a couple even dropped by our table to say a few words. It was as if we are finally at peace and meant to be there. We stayed on past lunch time as Ray loves a sausage "sanga" (sandwich) from the BBQ. And it is nice when he gets one of the thing he likes for a change. Makes life more bearable for him. Tonight Baby Alex was not in a good mood, he cried a lot, he pulled his legs up to his chest and screamed some. I cuddled him a lot and Tori watched videos after our evening meal. Then she wanted a bath and I handed a crying Alex to Ray, putting him in the crook of his "bad" arm so he could pat him with his good hand. After a few minutes the crying stopped. I went back in and there is Ray watching football with the volume way down and a sleeping baby in the crook of his arm. If ever I have wondered why Ray has survived his five strokes and numerous other health events it is all vindicated with what I saw so clearly in that moment. Ray is here to help give love, to his friends, to his family however rarely they call on us and now to one more small addition to our family.

I have borrowed one of Sarah's (spacie1) sayings for my title. I have just been chatting with her and I know Gary is so much worse than Ray and yet I was pouring out my troubles to her as if she hasn't got enough of her own without the burden of mine. But I sure need to tell someone exactly how life is for me somedays, without the sugar coating, without the :"I'm fine thanks and how are you?" and without the blank look that comes over a non-caregiver's face when you tell them the trials you face each day looking after someone who is physically and mentally disabled. I am finding it hard to read other people's blogs today. Because I feel so down today I can't get that whining tone out of my voice. Because I feel so down today what other people are going through seems so trivial. Like talking about a hangnail when the person in the next bed is having a leg off. I am just so upset about what is happening in our lives. I have tried so hard to look after Ray and yet we now seem to be at the stage where it is all getting too hard. I am coping yes, I am enjoying life no. I need a break and yet I am afraid of what others will say when I take one. The snide remarks that HE was in care but SHE was out enjoying herself. I know a couple of people that will say that. And they are not part of the crowd observing the day-to-day activity here, but a couple who ring occassionally and tell me what an angel I am to take on such a heavy burden and do such a good job of it. Angels may exist in heaven but the rest of us do the burden of the dirty work here on earth. The first thing I smell of a morning is urine. Ray has a bottle by his side of the bed but is not always good at using it so he has a mat which I wash that the bottle sits on. That is one of my first waking thoughts:"Has Ray gone past the bottle again." This morning he had an "accident" on the way to the toilet. Why do I keep on calling them "accidents" when he does it so frequently? Isn't there some other word I can use? Maybe I can call it a frequent fecal event? He didn't clean it up, he never does, that is my job. Afterwards he doesn't even acknowledge that it happened. It is as if he doesn't acknowledge it then it didn't happen. So when the doctor asks him does this type of event occur frequently he answers:"no". And as it is not in his memory when I answer "yes" he frowns and shakes his head. He has a lot of bad habits now that he didn't have before at least not the the same intensity. The trivial , annoying ones, leaving taps dripping, leaving the milk out on the side, not wiping up spills. It is as if there is someone just waiting somewhere to clean it all up. That mysterious "mother figure" that we all need who will come by and sweep, clean, mop and dust so we have no responsibility to tidy up for ourselves. I know to a certain extent that was there most of Ray's formative years. He always had someone to clean up after him. Now it is beginning to grate on me. I want him to at least attempt to tidy up or acknowledge that there is a problem. Instead of him just walking away. And I could go on and on listing his faults until you were so tired of reading this rant that you were grateful for the little irritations of your own lives. And I realise for some people my rants are trivial in the extreme and what you are coping with as a survivor or caregiver is much worse and I do apologize. Usually after I get this far through the blog I back out and don't publish it. I wonder what you would feel if you could see my raw emotions, my tears of self-pity. But maybe if you tiptoed into the next room you could see Ray laying there asleep, quite oblivious to the turbulent emotions I am feeling. Because even when I yell them at the top of my voice he never acknowledges that he is in any way to blame for how I feel. "What are you so cranky about?" he says. What indeed.

Oh , I am GREEN with envy! A glass of wine in the bush with so many animals. My memories of the bush inland when we lived south west of here are the night noises and the mad dawn chorus of birds. Aussie animals are shy and not often seen so it is a treat when you do see them. Apart from the kangaroos on the edge of all the wheat farms of course, they can be far too plentiful. Enjoy your weekend, post pictures in the Gallery when you come back. Sue. :gleam:

Today was a day with some difficulties. We started it early as we had to be in at the Nephrologist's( not Urologist's and a Professor at that) at 7.45am to see him at 8am. This meant a 6am start. I had a tummy ache all night from eating the wrong foods. I know, I know I am a big girl and should know better but it didn't occur to me that the topping on the fruit pie slice for dessert would be coconut until I had eaten it. Palm oil and I don't get on so I was here at 2.30am my time waiting for the pain to go away. Some medication and four glasses of water over a period of an hour generally dilutes the problem to manageable proportions. So 6am came early for me. Ray was very co-operative and got dressed and ate breakfast without a fuss while I searched for last week's ultrasound, some notes from the local doctor, some old notes from another specialist etc. Fortunately the early commuters had gone and the traffic was moving well. Only four lots of roadworks between us and town and then hey! my luck was in, there was a parking space left. The interview went smoothly, the specialist was a bit surprised to see us as Ray isn't on death's door but when he read the reports etc he said it was a good idea to review and change ALL his medication, all six main medications have to be replaced by others more gentle on the kidneys. Hot Dog!! Then Nurse Susie had to escort the patient to the cubicle and Ray had to produce a urine sample. That was semi-satisfactory and we got some remarks about uncontrolled diabetes etc. And then the crunch - Ray will have to go onto insulin! I have been fighting the change for a while now, as far as I am concerned this will be the end of our present life. No more impromptu stopovers at a friend's house, no more bus tours ( because of the disorganised meal times) no more Ray going out to Scallywags as he wouldn't be able to go through the routine by himself, and maybe not even going to Lions dinners as there is nowhere I can go with Ray to take his blood test and give him a needle. * Insert a line of swear words here and you don't have half the feelings I am feeling here.* And then we went on down to the pathology lab to get the test results and we had done the test wrong and it would have to be redone the following morning at the same time. It should have been the first one of the day. Well excuse me! Could someone have told me that? So I did call in to the nearby pathologist's where we usually have bloodwork done and got a full list of instructions, bottles, gloves etc. Tomorrow Nurse Susie will be on the job and this time it will be right! Right? A lot of you have been here before me I know and am wondering what I am going on about. Well at school I was told in vocational study that I should be a nurse and I said "Ewww, all that blood and bodily fluids, no thanks." and that looks a lot like what the future holds for us doesn't it?

T, I don't usually have any luck. I echo the words of an old friend of my mothers who used to say: "The good Lord lets me buy as many raffle tickets as I can afford, He just never lets me win anything." Next week I'll probaly be back to my 5 out of eleven score again. Sue.

Tom, it is a free competition and there is just a weekly prize of $50 drawn among the top tippers for the week. I didn't get that but at least, just for once I did get a good result. I think as a caregiver I get disheartened by the fact that I do so few of the things I used to do that guessing the winners for just one week seemed such an achievement. I guess I just need to get out more eh? Sue. PS I am now doing better than my son too. How good is that?

I don't understand what rehab Bill will be able to do? Ray is going into respite in November but there will be no therapy, they will just look after his needs. I will not be going there every day. After all the purpose of the respite is to give the caregiver a break so he/she can go on in the caregiver role. In our hospitals we are not allowed to shower or shave the patient, even if we are the caregiver, and can only feed them "under supervision" I guess that is all about liability. It does make you wonder what life is coming to. But it does make it easier for the caregiver who can say: "I'd love to help but I am not allowed." If Ray asked where I was when he was in hospital I used reasons like - "stuck in traffic, paying the bills, drinking extra cups of coffee ( always got a comment on that one!), answering phone calls from people who need to know how you are doing, getting the house ready so you can come home". I know it is tough but they can wait an extra hour if they have to. And being on your own is often what life is about when you are seperated by illness. Life is tough sometimes and just taking it day-by-day gets you through. Keep on doing what you are doing Ann, but do take some time for yourself. Sue.

Got a letter today, yet another one, asking do I want to attend a Carer's Support group? "I would love to, but what would I do with Ray? "is my reply every time. I have been looking for a stroke support group locally but they all seem to be at a distance and meet in the afternoon, not the best time for Ray. I need one that meets locally at 10.30am. Great you have found a group you and Rolly can attend. If you have been to another meeting post and let us know what your group is doing. Sue.

Ann, I doubt that Bill is finding life a nightmare. He has nursing, food when he needs it and knows you are there as his support. You need some time out so get whatever help you can for Bill and then take every second day off. Listen. This is so important, you CAN leave Bill to the care of others and relax yourself. Yes, we all cope with illness when our suvivor is home and fall apart when we have time. I had a bad day a few weeks ago and threw myself on the bed ten minutes at a time, jumping up in between bouts of nausea to perform the usual tasks. There wasn't any other choice. (((hugs))) Sue.

Ray and I just watched a documantary called "Survivng Katrina", all those poor people, it certainly brought it all back to us as here in Australia we saw it all unfolding on CNN. Our government too is sometimes slow to react and not all the homes blown away in Cyclone Larry in north Queensalnd have been restored yet. Most of the talk from politicians has no-one follow it up and so it doesn't get the action it needs. But we go on believing what they say - incredible really. Congratulations Bill on the two arm golf and hope you enjoy that trip to the Nascars. It is so good when you recover some of the skills and thrills of your pre-stroke life. Sue.

Most times I plod along from day to day. Like most people I do my best. That's about all your average caregiver can do. I am not rich, or beautiful or clever. I am just your average middle aged woman. I am plain and kind and reasonably good. Not outstanding in any way, shape or form. But we all excel sometimes. We are cited for awards of various kinds, from certificates in kindergarten to doctorates in University. We may be praised by our bosses, awarded by the community for acts of bravery or acts of charity or feted by our friends. For a moment we have our turn to shine. Some people have more than one moment as they excel in a praiseworthy field. Some outstanding or memorable athlete, the Tiger Woods of their field, shine again and again. What is this blog all about? I have been doing a free tipping contest on AFL ( Australian Football League, the kind of football popular in Victoria) and NRL (National Rugby League)the popular form of football in New South Wales). I am about in the middle of the scores in both competition, my tipping is erratic to say the least. But when I looked up my results tonight I had scored 11/11 on week 22 of the AFL ladder. I couldn't believe it, for once a perfect score. I am stunned. Inspired guesswork and an occassional read of what the experts have to say and I finally cracked a perfect score. The rest of my life is maintaining the status quo. I had to take Ray to the doctor on Friday as he had run out of scripts for a couple of his medications. I also took along the urinary tract ultrasounds for his doctor to review. He is extremely disappointed by Ray's diabetic blood test which showed it as out of control. The kidney screening was not good, other organ functions not much better. For someone who answers :"I'm fine thanks." Ray is nowhere near that self-appraisal. Mind you neither is he at deaths door. Just in that space where the warnings lights start to flicker and a few things need attention if he is to go on being well. So it is another round of specialists, he is to see a Urologist first and then maybe a Diabetic specialist. The last one of those he saw in 2001. Our family gathering on Saturday was nice, the family arrived more or less on time. And the two older grandkids were okay playing together. Naomi had a tummy problem and wouldn't eat, Alex was having a grizzly day and screamed a bit, normal range of behaviour for kids. I finished up taking Tori and Alex to the park to give everyone else's ears a break. Ray enjoyed the BBQ, the singing of Happy Father's Day. He loved the two cakes, white chocolate with caramel icing and chocolate mudcake with chocolate icing, one was for Father's Day, the other for his birthday. The littlies put a lot of candles on the cakes, enough to light up a small town. Ray couldn't decide which one to have first so he had a piece of each. He ignored the presents as he usually does, suffering from embarrassment if someone does something good for him has always been a problem for him, maybe more so now as he doesn't seem capable of showing emotions. Today he was a little slow, in his dressing, in his walking and talking and eating, a normal reaction to a full day yesterday. So he slept in as late as time would allow as we needed to get up for church. He came home and went to bed straight after lunch and got up just before dinner. He enjoyed a special meal cooked by Trevor ( well re-heated really) of more pork spare ribs and had a special dessert. It's good to spoil him occassionally. We will arranged a special dinner on Friday night for his birthday, just the three of us as the others are busy with other events. I spent some time at the Dementia Lodge with Mum today as she had another fall yesterday and I went to spend some time with her to observe her movements etc. She seems fine. One of the nurses came and told me her troubles. I guess I am a sitting duck really, sitting there beside my Mum. Anyway I hope she felt better for it. Her Mum is dying with cancer and she has to go back to New Zealand to take a turn nursing her mother to give her sisters a break. Trading paid nursing for unpaid as she said. But it is her Mum so she will use her holidays to help out other family members. Today on the whole was a good day. And I got 100% in this week's AFL football tipping contest. A lot of people are going to hear about that!

Welcome back Debbie, good to see you back in your blog again. How about coming to chat too, plenty of newbies so we need some experienced people on to help them. Sue.

:friends: Sorry you are hurting :friends: Sue.

"Spring, Spring, the bird is on the wing! How absurd, I thought the wing was on the bird!" If I knew who wrote that piece of nonsense verse I would give them credit for it. It is just one of the many attachments in my memory to the word Spring. It is officially the first day of Spring today. It is going to be warm and sunny the weather forecasters tell us. It may go back to being wet, cold and miserable by the end of the weekend, but today is going to be fine and sunny. Which is just as well as Sunday is Fathers Day and a lot of people plan family picnics and outdoor BBQs to honour "the old Bloke" who fathered and/or raised them. Shirley asked what she should get her Dad for Fathers Day? I don't have any answers. Once they would have given him clothes, tools, books, photos of the kids, and the traditional ones, undies and socks. If they get gift certificates I am the one who has to make the decisions about what to do with them so I am happier if they decide on something themselves. Ray is not the man with everything so it is not hard to buy something for him. But something that will bring him joy and a smile to his face? I don't know. The tests have been done and I have to go to the local doctor to get results, maybe on Tuesday. Today Ray will be back from Camp Breakaway about 10.30am and I have a yard to put back into some kind of order after the workmen finished the carport yesterday. I need some run around space for the littlies on Sunday. And to top off our woes we go onto level four water restrictions today so no watering potplants. I have my tank water so will use that under cover of darkness and try not to feel guilty. But there will be no lovely annuals blooming until the rain starts filling the catchment dam up and restrictions are lifted. And gardening is one of my most fulfilling hobbies. (Ok Jean, this is a difficulty not a disaster but I do love my flowers.) I have been rethinking the "putting Ray into temporary care" for November, the more I think about it the less I want to do it. I know I need the break, even this three day break is like Heaven to me, but I don't want him to go downhill because I have imposed what I want above what he needs. And I know well what brings him happiness. A cup of morning tea and a piece of cake sitting on the verandah gazing at "his" view. The most cheerful expressions on his face of late have been when he is doing that. Even seeing the family or going out for the day is secondary to his need to just sit there in the landscape he loves. I have been reading a lot lately, on stroke support sites, in medical journals about strokes and there is one big grey area in all the reporting. No-one mentions the loneliness of the stroke survivor or of the caregiver. It is not just the "alone and unsupported" feelings that happen when former friends vanish, when no-one is near to help with a lift or soothe your heart when another appalling event occurs. It is the loneliness of making empty decisions and planning a future that heads more towards the nursing home and less towards the trip to the latest Resort. I don't know what the beautiful people are doing but the rest of us seem to do lot of laundry! And so the days will go on much like before. The round of doctors' appointments and the medical stuff is a part of our routine and takes up the majority of our "free" time. The family will come and go as they usually do. We will go to church and local events. And then, before we know it is will be the pre-Christmas rush, our Sydney family moving to wherever they have been posted (pray that it is close enough for us to visit without the journey upsetting Ray) and all the other things that summer brings. Summer heat, flies, heat waves, bush fires, BBQs, the beach on hot days, humidity, sleepless nights of tossing and turning, trying to keep cool. The days of wine and roses it isn't. But each season is to be treasured. I loved last summer, when we managed to get to the beach with the little ones and even Ray got to be in the water a few times. So I will look past the dark moments as they arise, to brighter days ahead.