swilkinson

Hope you had a nice quiet Easter Ken. We did as I decided the only place I would take the car would be to church on Sunday. We did have two lots of visitors and quite a few phone calls but I still managed to catch up on some of the backlog of chores here. You keep positive about the walking alone and one day it will just happen. It is going over and over the exercise etc that seems to make something switch on again inside your brain. Ray stood by the sink and dried the dishes today, first time since the fall he hasn't asked for a chair to sit down on. So things do change for the better. Sue.

Thoughts for Easter Day Heard some hopping in the night Not a sound to give a fright Easter bunny having fun Leaving eggs for everyone. Went to church again today, Happy, happy Easter Day Remembered that the egg has meaning Not just sugar for the gleaning. Hollow eggs remind us then That the tomb was empty when Followers with heart filled dread Came expecting Jesus dead. And the solid eggs remind us Of the wonderful life inside us Eggs from which small chickens grow Contain the seeds of life you know. So the bunny with his sharing Tells the world we should be caring. As did hymns we sang today Tell us we have NEW LIFE each day. copyright Sue Wilkinson 2007.

Mary Jo Please extend the sympathy of all in the blog community to your mother. Not everyone will reply to your blog but many will see it and be thinking of you. We are a close knit group here and do share each others joys and sorrows. Welcome to the world of blogging, this is a special place to express some of those feelings we don't share with family and friends. I use mine to sort out some of my thoughts and feelings and document my struggle. All blogs are special because they are a unique slice of our lives. This is where you will one day look back and think; "This time last year I was going through this? My, how far I have come." Sue.

Al, I just read all your blogs. I am so sorry you had all that trouble being diagnosed. It is a crying shame in this day and age where there are so many tests etc that doctors can run to find out what is wrong that some just don't bother. Are they lazy, undertrained or what? Ray had one stroke go undiagnosed here, it is harder with the additional ones as levels of speech , movement etc usually haven't been charted. I am not good at describing what level exactly Ray is at with all his activities and that is what it usually comes down to, my description of what he previously could or could not do. I'm glad you did get on the right treatment eventually but what a shame it all took so long and you were allowed to lose so much. I hope you are able to make the most of the warmer weather to get all those little chores done. It always gives me great satisfaction to get some chores crossed off my to do list. Sue.

"When the red, red robin comes bob. bob. bobbing along, along" says an old song I once used to sing. That is how I feel this week. Do this, bob bob, do that, bob bob. Just going from one job to another, not much time to rest in between. Autumn (fall) is that time when you clean up the outside of the house, clear up the inside of the house, pack things away, put things right. It is a busy time. On Monday the tilers came and tiled the shower room. They were here most of the day tracking in mud and clay and builders' sand. They whistled and sang along to their radio. They were young and noisy and just happy to be working on a little job that would not take all day, they said. I can understand that, in a week with a four day break at the end of it it is good if you can finish work early one day to do banking and other small errands that need doing. It is the way Ray would have felt when he was working. Today we went to Tori's school to Grandparents Day. This has largely replaced the morning when parents went to school to look at your work, that is in the evening time now. Grandparents do not always work and so are available through the day so this morning at 10am there was a sea of grey hair and wrinkled faces and spectacled eyes and happy smiles waiting to be entertained. The kids put on the usual recorder band, junior choir, senior dance troupe performance ( I did think of you Dave) and the deputy principal handed out some awards and the Kindies wriggles and got the stern look and the pointed finger from their teacher. I did hear her hiss; "Tori, sit down." once as Tori turned once again to give us a beaming smile. The school is built into the side of the hill and not even a bit wheelchair friendly so I did have some difficulty with it all. Tori wanted to go down to the oval to show us the swings and gym equipment so I wheeled Ray down and another grandfather helped me push him up again. Her classroom is nowhere near the ramped area but by taking the ramp and circumnavigating a couple of buildings we got there in the end. The eight steps down into the sunken classroom I did manage to haul Ray down and then up. And all the time our grand daughter glowed like a glow worm with the glory of having her Granma and Pa on show. So it was worth all the difficulties we overcame to get there. The DP in his speech said his grandparents gave him the strength to face the difficulties in his life. He had an invalid father but a strong grandfather and a stronger grandmother. He said he spent a lot of time with his grandparents and learned a lot about rural life and the district in which he lived from them. For those of you who are actively involved with grandchildren his accollade is for you too, as he said he would not have grown into a well-rounded human being without their imput. This afternoon was craft group so we had just twenty minutes at home to have some lunch. Then off we went again. Ray has some scrambled eggs on toast, a real quickie meal in the microwave and the handful of herbs used for flavouring came from the pots outside the door. We left craft group early to go to the physio, the appointment postponed from this morning. There Ray was shown how to use the stationary bike by sitting behind it and using the pedals. This will help his hip flexors rebuild. He broke into a sweat after three or four minutes so it might take a while for him to build up to twenty minutes a day! The physio is determined he will improve his walking to the stage where he is no longer in danger of falling. He is young and enthusiastic and I hope he can gradually retrain Ray to walk in a way that will be more safe. It is a real relief that someone has some new ideas in that direction. And so far Ray is listening to him. Tonight is our Lions meeting. I met up with one of the Lions ladies through the week and she told me in detail of the many illnesses the older members are suffering from. Goodness me! And yet they are a cheerful bunch and put in many hours each week collectively helping our community. Most are in their 70s or 80s so could if they wanted just retire to a rocking chair, but they are from a generation when helping out in the community was a thing to be admired. Ray, as a person who has had five strokes, is among the disabled members but still likes to do what he can to help. So we will once again be selling raffle tickets shortly. Might as well do it while we are still able. Tomorrow will be easier as I come on here in the morning and talk to some of you in chat . And then I will tackle some of the inside jobs in the afternoon as there is rain predicted. We are getting some moisture at last though the rain is mostly light rather than the steady rain we really need. But there is always plenty of housework, more than enough to keep me busy. And if I have any extra time I will cook some meals for the freezer too. Thursday is shopping etc, my normal Friday routine, Friday is Good Friday. Another busy week, but at least at the end of it I should be able to look back and say I have accomplished something.

Thank goodness you decided to post another recipe Rolly. I was looking everywhere for my version of Mexican Soup you published last year. Trev and I have tried a few of your recipes, I am not a chili fan but he is, so I make much milder versions of the hotter recipes. Cooler weather has just arrived in our part of Australia, so time to get those winter recipes out. Glad you've reached your second anniversary. I think you settle more into your new life in your third year. Maybe you just begin to get used to the way you are and your expectations become more realistic. Good luck to you and Sue in all your endeavours. Sue and Ray.

Hope the dental work went well too. And I forgot the meaty bone for Bud. Sue.

Bill congratulations on your 2nd anniverasary, as others have said you have lost some but regained your independence. You have been an inspiration to a lot of people and your friendly nature shines through in your posts. I am sure good things are ahead for you. We have men with aphasia in our stroke support group who have gone on after stroke to form good relationships with new families so I am sure that will be for you one day too. Keep on keeping on mate. Sue.

Hey! hey! hey! it's a beautiful day! Got some of my garden litter bagged up today. All things come to she who waits. I just had to be patient. I am attempting an afternoon off here, so have been in the chat room chatting on and off. It is so good to catch up with a few of you. I have been too distracted by Ray's new routine to be on much lately. But I will have to stop worrying and accept me and any mistakes I make. After all there is only one of me, not a whole hospital staff here! Nothing helps so much as talking to a friend, call them an acquaintance, colleague, fellow sufferer, whatever you like to call them. All of those people who express concern are friends in my book, until proven otherwise. And I want to keep a few as treasure in my old age. Bless you all for your support, care, may you be happy in whatever you do today. Sue.

Eh? If you are in the state of Queensland you put that on the end of every sentence, you also have to slow down and drawl a bit. Here in New South Wales we are all a little more sophisticated...lol. I am sure you will get on okay in Canada, have some 1st cousins there, and my Dad's last brother, and a few third and fourth cousins as well. I would love to catch up with them, maybe some day. Your fishing expeditions remind me how much I like fishing too, but since Ray has been mostly in the wheelchair have put it out of my mind, maybe I should find a spot that is wheelchair friendly and do some early summer next year. I used to be good at catching bream, which are a nice sweet fish here. Ah to travel the world. Some people have all the luck, eh? Sue.

Ok, all the lovely people who prayed that I would have a dream less sleep, I finally did, between 4pm and 8pm this afternoon! Got up to find poor Ray sitting in the loungeroom in front of the tv with no dinner. He was wondering if I would ever wake up! Thanks anyway to all for their concern. Sue.

From time to time I have nightmares. If they are bad nightmares, the sort that starts a re-run as soon as you close your eyes I get out of bed. Either I read for a while or come here to the computer. I did that twice last week. 4am and I am awake, in front of my computer, wrapped in my comfortable dressing gown. Hugging myself to send the demons in the bad dream back to where they came from. Every time life gets too busy, and I get too stressed I start on the nightmares again. There is the one about running on the spot, in the dream I am trying to catch something or someone who has just gone out of sight around the corner. You've probably had this one too. So I try to increase my speed. I either wake in a panic or feel as if my chest has hit a brick wall. Then there is the black terror nightmare, I am in the dark, just outside my vision is something even darker, moving slower ahead of me. I am trying to hang back, suddenly it is facing me, something so terrible I can't even breathe. I wake up from that one too. What do dreams tell us? I often wonder if it is worth finding someone to interpret dreams but know from biblical stories that that is not always wise. So mostly I just trust that things will get better and the nightmares will vanish again. Oh sometimes to drift into sweet sleep like a child does, just close your eyes and go to sleep. Go to sleep without running through the lists of what I did and did not do today. Like Lucy I wonder why I feel guilty. As if I have some control over what life brings day-by-day. The past few days I have had some contacts that have irritated me. The sort of friend who rings and says they have not seen me, sounding as if it is my fault and I am hiding somewhere. I explain that Ray has been sick and so I have had to stay close to home. The non-understanding caller then says: "But he's better isn't he? You should be able to do ### now surely?" Gosh it is nice to be wanted isn't it? And in the past I would have moved heaven and hell to help out but it just isn't practical to try and fit anything else into a life that needs more time out not less. Next week is the one the church calls Holy Week, the lead up to Easter. It starts with Palm Sunday and in most churches there will be palm fronds or palm crosses handed out. Some churches will re-enact the ride Jesus made into Jerusalem on a donkey, "humble, and riding on a donkey" an old song we sang as kids had that in it. Then there is a week of prayer, then Good Friday, Easter Saturday and glorious Easter Sunday. They throw in Easter Monday here so the workers get a four days weekend if they have a Monday to Friday job. The shift workers, the casuals and us caregivers just go on working our usual hours. I am not ready for Easter this year. I have not been reading my Bible and reflecting, I have been looking after Ray, visiting him in hospital and now he is home again, looking after him here. I do not have time to sit and pray for the world and all its sins. I am too busy. I hope though that others are spending their time in prayer. The world sure could do with it. The news is full of the reckless,selfish acts of mankind. The deaths caused by hit-and-run drivers, senseless crimes against old folk, the humble surely do suffer at the hands of the powerful and the strong no longer protect the weak. Guess that much hasn't changed a lot in 2000 years. We still need someone to come and straighten us out, give us some new rules to live by. As for someone dying for our sins - would anyone notice? I am like the figure I see in my nightmare, the one who runs on the spot. I have a garden full of litter, my green topped garden litter bin goes out tonight, it is raining. I can't go out and sweep it all up. I have so many small insignificant jobs to do, ironing, mending, tidying away. The contents of the store room is still on the back verandah, under the patio roof. There is nowhere to put it and I will have to wait until I can think of small moves that will open up a corner here and a drawer there so it all fits back in. Sure I could throw some of my stuff out and when I need it? What do I do then? The shower room is on hold as the workers are mostly involved in a trip to Malaysia to a convention. So nothing now until they come home again. The work is two thirds done. But now we wait. I'm going to wait sitting down, not running on the spot.

No anwer to your frustration. It is the way it is. ((HUGS))) from Sue.

When his uncle had a slight stroke that affected his memory my next door neighbour did some research and found the best exercises you can do for cognitive therapy is learn a musical instrument and learn a new language! So you are definately on the right track. I admire the way you find so much to do to push for improvement in all areas of your life. Keep on keeping on mate. Sue.

Madonna, welcome to the blogging community. I have found that it is good to put thoughts on paper so that you can sort them out. For me it is a kind of self-help therapy. I see from your posts that last time you posted your sister was in a nursing home with very little improvement since the original stroke. I hope you can use your blog to explore some of the feelings about what has happened to her and to you and your family. Whatever happens you have found support here. ((HUGS))) from Sue.

I grow a few herbs in tubs too, I don't have to take them in in winter here as it is so mild. Some do grow spindly so I leave them in till spring and then replace them. I just pull all the leaves off the old plant and throw it away. Some things grow mad. like the mint and I can fill up any spaces with that. I make herbed fritters with a handful of some herbs, an egg, some flour and milk to mix. They go with just about anything. Good luck with your garden Mary, it is good to have fresh herbs as Lin says. And it is another contribution you can make to greening Planet Earth. Sue.

Buns of steel....hmmm...maybe I should add that to my "wish list". I do have an old stationary bike but no treadmill. Maybe I could ride my bike instead of giving myself a "crochetting break". I love all the blogs here because you can read five or six and be in five or six differnt worlds. Good program for each morning, though the breakfast/coffee in bed would drive me mad! I have to be out of bed as soon as my eyes are open. I think because my Dad hated us staying in bed, said it made people lazy! Good luck with your build up to dancing! Ray and I loved to dance together, he had been an instructor and was divine. Then in 1990 the first small stroke took away his ability to turn and pivot, aaargh! end of our dancing together. But you have fun. Sue.

Ann, Ray has had heaps of slow soft falls or falls on carpets, against walls and into chairs. I think it is the angle and the surface that determines the break. You did well is using your common sense and judging Bill as you know him to be. I couldn't fault what you did, it is much the same as I have done with all the other falls. You can't live in fear. It is best to deal with each situation as a one-of and live as if it will never happen again. I hope life is stable for a while. Sue.

When Ray has his major strokes in 1999 we had six weeks at Bendigo, a rural city in Victoria about 600 miles from where we live. Ray was in the big hospital, in and out of intensive care as he had strokes, embolisms, burst stomach ulcers and arrhythmia attacks. I stayed at the old nurses home, now used for visiting students and stranded patients and their families. There for the first time I talked with other caregivers. Up to then I had probably spoken to a few but it was more in a :"You have my sympathy, dear" way than in a way that was supportive. This was the first time the person who desperately needed support was ME!! Now I listened to what others had to say about the difficulties of living with someone who needed a lot of time and attention and devotion as their care needs increased. Hey! this was all news to me. So I listened really hard. I needed to know what lay ahead of me. When I was a telephone counsellor on the Lifeline phone in the late 80's, early 90's,I spoke regularly on Wednesday afternoons to a guy named Bill. Bill cared for his wife with a mental illness and his three daughters all in primary school. He was a cheerful voice on the phone. He called because those who cared for his wife focussed on her, no-one seemed to care about him. So he rang our support number to just debrief about his role as a carer, tell us about his week and tell us some of the problems he faced as a male carer in a female household. I think that was my first real glimpse of the loneliness of the caregiving role. Bill sometimes said that although he loved his wife he didn't know how long he could continue to live that way. I never knew what happened to him as I changed to a Thursday evening shift to help out another counsellor and no longer got the calls. Due to confidentiality issues even if I had asked the person who had taken over my shift about Bill I would not have got an answer. It was one of the frustrating things about that job that people only came into your life briefly and when you got to know them, and like them , as I often did, they could disappear at any time leaving us wondering what had happened. Other callers also became a favourite time on the shift, little old ladies nursing sick husbands would phone in on Thursday nights, or any night come to that, after their charge had gone to bed. I guess telephone counselling services functioned a lot like this site does, except that the counsellors were trained and the clients were anonymous. Other similarities were that often both parties were reaching out, the counsellor as part of a wish to help in the community (in an anonymous way in some cases as they would have been well-known people) and the clients were reaching out to get the help they needed. Not all of the calls were traumatic or of a vital nature, some people just felt the need to chat for a few moments to push the loneliness away. The journey after Ray came home from hospital and rehab in 1999 I have documented in other blogs. I found the changing role from wife and wage earner, to wife, mother, daughter etc and caregiver pretty harrowing. I was not an uncaring person but I was not a natural caregiver. I had to be trained by a lot of people in small increments as I learned to care for Ray's physical and emotional needs. I had three kids and in some ways I suddenly had a fourth, albeit one who had formerly been my husband, lover etc. Now our roles were changed and I did not find that easy to take to. I so empathise with those who come as newbies to Strokenet and express their chagrin, fear, worry and sometimes despair as they too become caregivers to a stroke survivor. In 2000 Ray broke his hip and I stayed in a hostel set up for people using the oncology services at the hospital which was on the south coast, again a long way from home. Only a few of us were caregivers, the rest were patients having daily scheduled treaments that required them to be near the hospital on a 24 hour basis. Having them live close by but not in the hospital was seen as an advantage as they could actually have a close relative live in to support them. I felt as times as the cancer survivors came back from treatment that I as a caregiver was one of the lucky ones! I got friendly with an older lady who was there while the surgeons operated on her husband who had cancer but was also having a hip replacement. She was not well herself and said to me one day:"It is not just being a nurse to my husband, it is the whole package!" I think after all these years I suddenly know what she means. It is not just giving Ray the pills and the insulin. It is about remembering to change the needles, shake up the mixture, remember which side it went in yesterday, put it back where I got it from. It is about going to the pharmacy, for the right med, on the right day. It is about going to the doctor's and asking the right questions. It is about being an advocate for Ray in his contacts from day to day, filling in the information he does not remember, being his social secretary, his messenger, his letter writer. It is about paying the bills on time, keeping the appointments, remembering who you phoned last and about what. It is still being a wife, mother, grandmother and daughter and still doing all of the above. I know some of the single survivors do a lot of this too, they are both the survivor and in a sense the caregiver as they learn to deal with all the stroke related/medical related issues and keep a household running. I know what a strain it must be on them - as much as a person who has not had a stroke CAN feel that tension. It is not as easy as we imagine to feel another's pain. I want to update the history of caregiving sometimes. To explain that where I am now is an indication of where I have come from. The years in Lifeline telephone counselling, pastoral care with the churches, my stint in a major hospital as a voluntary chaplain have all had a place in the way I am now. None of us came to the caregiving role with an instruction book. We all have to learn as we go along. Like child rearing most of us get just one go at it and will never know how the results relate to what we did. It is a process, sometimes a rewarding one, and sometimes one you wouldn't wish on your worst enemy. To some people who look on at our struggle it must all seem fairly simple, after all how much trouble can a lovely gentle smiling person like Ray be to look after? I guess what they fail to see is the same struggle as we all put into working and looking after kids at the same time. I work as a nurse, counsellor, cleaner, gardener, cook, housekeeper, secretary, personal assistant etc for one man - Ray. I also act as driver, medical advisor and so many other jobs that you can probably add to if you think about all that I do. Unlike a lot of women my age I can't spend hours drinking coffee in the mall, getting my beauty treatment , buying bling. I can't flit off on holidays by myself, visit friends or family for a weekend on my own, get myself back in shape with a personal trainer. I am restricted in what I do as I have a limited number of hours during which I can be away from the person I care for. I am not complaining...hello...do I look like a person who needs my eyelashes tinted? But I am saying caregiving is not just a job, it more than that, it is the whole package.

Anne, you are so right. A lot of the stress comes from being "the brains for two" so am not only thinking of what I have to do to get ready to go out, but also what Ray has to do. I also have to put it all to him in tiny, easy-to-understand instructions so he and I get out of the door together. And now with the new meds plus the insulin I seem to have to concentrate so hard to get it all right in the mornings which is when most of our appointments are. But it is doable. The shower room is ready for the tiler. I have blue spots on my hands and arms from painting on the wet sealer so that was my bit and the disposal of all the rubble etc. The tiler hopefully comes next week to do his bit, then we await the return of the plumber. Nice photos of you and Baz in the Gallery. Maybe you could post a bio for you and for Baz so others get to know you better. Sue.

Phyllis, find an excuse for the caregivers and the survivors to have a separate session. Maybe ask the caregivers to work on some "problems" together. In case the lady who talks too much doesn't want to join them say it is her "imput" that is needed. I have struck this problem in other groups. One thing about groups is that they evolve a life of their own, for better or worse. See if you can have a private word with the ST and tell her some of what you have discussed here particularly the fear you have that he could speak if he could get a word in sideways. Good luck with implementing some of the great ideas you have for the group. Sue.

My Dad had a saying "I think he is his own worst enemy." Well I think sometimes I am mine. For one thing I can wake up full of positive thoughts and Susie Sunshine philosophy but it only takes one small thing to go wrong and my attitude changes. I don't mean to be negative, but a few minutes late for "X" and I feel as if the world is falling apart around me. I rant and rave, stamp and scold and finally Ray will be ready, so down the road and into the "late for wherever" traffic jam. Our main road is always under road construction somewhere or other so 50% of the year there is a hold up somewhere nearby. Grrr! How I hate some mornings! Then I still make snap judgements, most of the time I am a kind friendly thoughtful person but let something go wrong and all that changes. I become a mad woman clawing anyone who comes close. I can snap a caller on the end of the phone, hang up in the ear of a telemarketer, push in front of a car crawling across my lane, out-run older folk to get one place up in the queue at the supermarket. Don't they know I only have three hours to do all I need to do? I seem to have a madness take over my life sometimes. The constraints of time act like a strait jacket and cut off my goodness and I become as dog-eat-dog as all the ungodly out there. Of course a lot of this is down to stress. Since Ray has been home from hospital and we have added a physio appointment on Tuesday mornings and a doctor's visit Friday afternoon each week that has added tension to the week. But Ray was back at Daycare this week though so at least I got the time off while he was there and tomorrow will be Ray's second 9am-12noon time with a minder and my second three hours break so things should start to fall into place again soon. On the cheerful side we did finally have a meal out with Ray's sister and her husband, she has been ringing since November and promising that we would go out "soon" so am glad the time finally arrived. It is not that she's not a nice person, she is, but as a couple they are very self-absorbed and I think everyone else is just on the edge of their universe. Others have said in their blogs we are not always in the forefront of every one's minds and that is so true. Our tragedies seem devastating to us, but to others they are just another bit of bad news and you know for sure they think of us occassionally. But as Ray' sister said today: "By the time I start to think of ringing anyone it is way too late at night." I can fully understand that as the same applies to me sometimes too. The other good news is that my Dad's one remaining brother who lives in Ontario, Canada is thinking of coming to see us for another holiday in September or October. It is a very long way from him to us so I really appreciate even the thought that he might come and see us. He is a great friend to have too, always in touch as soon as something goes wrong. He said that he would like to visit us one more time. I hope he is able to do so. There is always some good things to look forward to. Cooler weather, sunny warm days, nights cool enough to sleep, plenty of nice fruits and vegetables in the shops. The shorter days will give me more time to work on some of my cold weather projects, so out with the crochet hook and the knitting needles and the patterns. Time to put the feet into the warm slippers, wrap the blanket around the legs and dream. If you think that is going to happen YOU must be dreaming. So t'is time to finish the chores of the day and put on the dinner. Always something to do. Before my worst enemy appears on the scene and wrecks my peaceful thoughts again.

Dead sticks could be roses,flowering shrubs, wonderfully perfumed plants like lilacs, old fashioned plants that would bring glory to your garden. They could be of great beauty and historical significance. Oh how I shudder at what you have done! You horticultural vandal! On the other hand you would have had to wait a long time to find out what was significant and what was some old plant the previous owner had planted because the color fitted. Guess your way was the best way for you. Cheer up, I think the the garden gods just bind you with vines and throw you down a deep well. How bad can that be? Sue. :farmer: :Ask: :thankyou: :doh: :jester: :laughbounce: :laughbounce:

Babs, so sorry to hear what you and Eddie have been through. (((HUGS))). I know that "slow dance" feeling. I am still wheelchairing Ray and it is so hard to go back to where you were, knowing that you don't often get back to even what they were before the last "critical event". But we have to live in HOPE. So hope we get to have that picture taken together in September. (((HUGS))) Tell me when to book the motel!! Sue.

Hey! I am not sure waking your wife up to see a sunrise is a positive thing! It wouldn't be for me if I was still tired from the night before. Maybe your impulse control is still out of whack...lol. Maybe being around positive people all the time is okay for some but for a balanced view on life there has to be a diverse array of opinions like here on Strokenet. While you are up someone else will be down and you can stretch out a hand to help them up. When you are down ( and it can happen anytime) we will be here to reach out a hand to you. Good luck with using all your gadgets and gizmos. Sue.