swilkinson

Good for you Lucy, you are still working on recovery and driving is a big part of opening up your world. So sorry to hear about your friend's son. Here also too many of our young people take their own lives. Such a pity when as we all know here life is really worth fighting for and minor set-backs can't break the human spirit. But depression untreated can. Looking forward to you being able to get out and about again and telling us all about it in your blogs. Sue.

At the moment I am full of doubts and fears. I know most of my worries are either unfounded or will work their way out. There is always a solution to our problems but often just not the solution we would wish for. And therein lies the source of the worries I guess. Ray and I are going up to visit our daughter so I am in the throes of getting ready. There are prescriptions to be made up, pharmaceuticals to buy ( not all are on script) and all the various equipment he needs to package in some way to keep it all safe for the journey. I am only taking one suitcase between us so am constantly packing and re-packing. Will it be hot, cold, wet, dry? who knows? But I can't take much so will have to buy anything we need that I don't pack. Some of the things we need, like a wheelchair, will be waiting for us. I have been psyching Ray up to fly. He has not flown since 1999, and as he now has panic attacks if he gets too stressed and no longer likes crowds, noise, changes of any kind here is another source of worry for me. But if we don't go now how long before he won't be able to go? we have to seize the moment. It is important to do what we can now, who knows what the days ahead will bring? This week I have been busy cancelling services and making arrangements to cover the period we are away. It all used to be so easy, throw a few things in a bag and away you go! Not so easy now Ray has access to services like his shower nurse, the community transport etc. now everyone needs to know where we are, when we will be back. I went to see my mum today and she is having trouble again with the broken arm, this time pain in her elbow and swelling in her hand. The nurse said she will send for the doctor again and see what he thinks. I don't want to see her in pain again. She smiled at me a couple of times during my stay, it was good to see her really looking at me and "maybe" knowing who I am? I hope so. It is so hard to have her almost silent now. How I wish I could hear her voice, have those conversations that went on and on, hear her sing or laugh at a joke. Think of me while I am gone. Think some positives thoughts for Ray too. Pray that he will understand what is going on around him, enjoy the company of his grandchildren, retain at least some memories from the trip, all good things I hope. Pray that my heart will be lightened and the worries will fade away. I am sorry to be a worry wart when many people are probably thinking they wished they had as few worries as I have. But we all know how quickly things can change. And therein lies another worry...sigh.

Well, the computer went kaput! Again. Third time this year. Now I am back on an older model rebuilt to serve me for a while I hope. I have a new firewall program thanks to Bonnie so let's hope it doesn't let any more of those dastardly trojans in to zap my bios. I have missed you all times 1000 and I have wanted every day to come on and catch up on the latest postings, the latest blogs, the latest news of any kind concerning any of you. I missed my chat and being without that left a hole in my heart - I really was bereft. What a bad feeling it is to be cut off from communicating in a way I have become accustomed to. So (((HUGS))) to you all. I look forward to hearing from you all soon. In whatever form that usually takes. And all the happenings in the past days, like Father's Day on September 2nd with Tori here from Saturday afternoon and the family coming over for a BBQ tea on Sunday night. Then at Craft group on Tuesday the "girls" brought in a cake to celebrate Ray's birthday, even before he had it. He was so pleased with all the fuss. On Saturday 8th it was Ray's REAL 65th birthday and we had Tori come Friday night so she and I got up and cooked Pa's breakfast and then we all went off to the church Spring Fair. More Birthday greetings there from a few people who are becoming more than acquaintances now, more like friends. It has taken us a while to settle into this church but I think we are finally there. Then the family came back on Saturday night and we all went out to dinner. We also went out Sunday, to a little village where Ray lived as a child to a reunion that happens every year. I made the big effort to get there but as it was raining only about fifty people turned up, only a handful Ray knew were there so it was a bit disappointing. I figure as the years go by I may not be abe to get out so much with Ray so it was still worth the effort to go. Of course all his family rang while we were out at the reunion so he only got phone messages but at least they all rang this year. And we rang most of them back. So he really did have a good birthday. Turned out to have three birthday cakes in total and Ray LOVES cake. So spring is warming up and there is as usual plenty to do. I would like to get out in the garden, clean out all the cupboards, thrown away the oldest clothes and buy some new ones. But it is hard to concentrate on all that with our visit to our daughter and family coming up next week, and all there is to do before then. I feel like the mouse on the wheel, running but getting nowhere! Where does all the time disappear to? Bring on the 28 hour day, I need it now! With a little bit of luck I will be on chat Tuesday night and do some catching up. For now, God bless, hope to catch up with you all soon.

Ray and I went to our Stroke Recovery group WAGS today. It's nice to meet up with the same group of friendly people every month. Can't say we have made friends but they are all pleasant people to be with. And of course we all have the stroke event in common. Only two people use wheelchairs so I guess Ray has more deficits than some. But they are very aware they share a common purpose - recovery. Some, like Ray have now had more than one stroke and some also have other ailments that add to the load they carry. The women carers I met at the womens weekend last year are all extra friendly and we are ALL looking forward to doing it all again in November. Boy! are we looking forward to that! And as we usally all go to lunch together there are opportunities to talk about issues other than stroke over the meal. Ray I know looks forward to this socialising as most of the men of the group do. Most have seen each other at the Scallywags group the day before so just go on from there. There is a guest speaker almost every month and today's was a nurse clinician who specialises in Stroke Recovery. As part of her Master's degree she has just made a DVD about Stroke Recovery. She said she particulaly wanted to use people she has met through her involvement with rehabilitiation services and clubs such as ours as she felt their sincerity would come across and their testimony would have more impact than if she had got actors to perform the roles. One couple from our group featured in the second lot of interviews. She has approached the subject using a series of headings and a cameo of someone's experience as an example. The beginning was about healthy choices to lessen the chance of another stroke, giving up smoking, losing weight , controlling diabetes, lessening cholesterol. Then the pro-active issues such as a healthy low fat diet, and taking up exercise. The exercise group was actually people who had had heart attacks as that group meets in her work place. Other issues included: change of lifestyle, loss of financial security sometimes leading to depression and lifestyle restrictions. Next came family issues such as generational expectations, loss of intimacy, relationship breakdown,touching briefly on violence, divorce, depression and suicide issues. The caregiver of one of Ray's Scallywags group was interviewed about caregiver self-neglect and carer fatigue issues. The whole presentation is only 20 minutes long but she has packed a lot of information into it. The aim is to give it to stroke survivors and/or family members as an introduction to life after stroke. She is now working on a second DVD on transition stages, Intensive Care to General Ward to Rehabilitation to Home, for Stroke survivors and their families. The idea is to give families something to watch which should spark discussion and bring them back in to the doctor, clinician or team with questions and suggestions. I think the DVD we saw today will be a wonderful resource in the future both by itself and as part of a series of presentations about stroke recovery. The section on survivor and caregiver fatigue issues also came from a survey done by our group. Unsurprisingly 85% of the group has had a major fatigue issue and many have been on anti-depressants and sleeping meds to help with the side issues of sleeplessness and depression. It is good people are honest in filling in these surveys and find no shame in admitting to their weaknesses and how they have sought and found help. The DVD will also be used as part of other regions health programs so will find an outlet in many other hospitals and health facilities. Good news for all who see it as I think it gives a uniform way of approaching stroke recovery education. Wish it had been available when Ray had his first stroke in 1990. Maybe then if we had taken up the challenge of really changing our lifestyle he wouldn't have had any further strokes. We picked up Tori on our way back home for her monthly Saturday night sleepover. We watched her cry through a wonderful children's movie and enjoyed her company all evening. Tomorrow it will be breakfast, church for us, Sunday school for Tori, then come home for a BBQ lunch for Fathers Day. I got to cuddle Alex today and will get the cuddle Oliver tomorrow. Both boys are doing very well. Life seems to have settled down at their house and a family of three children seems no more trouble to them than a family of two did. Which , let's face it, is what every grandparent wants to hear. I came home from WAGS with a lot to think about. I have resolved to look at a few more issues in my life that I have been putting on the back burner, including trying to do some regular exercise. I walk on Tuesday mornings now and most Thursdays but it it 20 to 40 minutes and that is less than I would like to do. I've been thinking of seeing if I can get into a beginners class where they won't mind if Ray sits up the back and reads. If I can't do that then I will buy exercise DVDs so I can exercise at home. I want to be a bit fitter than I am now. And giving a bit more thought to the menus and balance in our diets might be a good idea too. It is the first day of Spring today, maybe that is behind my wish for self-improvement. As usual only time will tell.

Wow, welcome back o road warrior and soon to be slim one. The first few weeks of any diet or lifestyle change are the hardest so prepare to overcome some barriers as you adjust. And try not to stamp on your nearest and dearest which is what I usually do if I give up some of my favourite foods. This site is addictive and, rightly so, you should feel a loss when all of your lovely friends here are not available. But you are back now and that is what counts. Sue. PS Read my blogs and that will catch you up on my grandson news.

A lot of people over the past few weeks have told me to

Ken, I can understand Kathy's concern but also your need for independence. I guess she feels that if you fell and injured yourself it would make her job harder and she would be responsible. Whenever I tell people Ray has had another fall they always say:"Where were you?" as if I should be right there beside him! Warm here today, maybe Spring is on the horizon and we will have those pleasant sunny days again. I was sick of the rain by the end of last week, even though we needed that much and more. Maybe ask Kathy if she could walk with you for short distances. I walked to the left of Ray and slightly behind so I could catch hold of him and hold him up if I needed to. Now I walk near him but without a hand on him and yes, if he falls he falls. Sue.

Kids going back to school always used to signal the end of summer for me. And a change of routine too as most things fun things got put off to the weekend when everyone was home. Glad you have your furniture now and you can each relax in your own space. Sue.

Lucy my friend, we are like turkeys here. We stick our necks out and sometimes we get the ax! You go on telling the truth the way you see it. If the family and friends mis-interpret this well it is a pity but shows a lack of maturity on their part. There will always be those people in our lives who are as irritating as the sand in the oyster shell, but that is how pearls are formed. So you keep on giving us your pearls of wisdom. (((Hugs))) from Sue.

I just had a visit from a dementia worker. She came to me via a referral from the rehab unit Ray was in after the fall which gave him the fractured pelvis and cracked hip socket. The group have an outreach team dealing with post-stroke not post-injury so could not take us on. Maybe they thought referring me to a dementia worker would at least fix one of our many problems. As most workers do she came with the best of intentions. But after she listened to my story of caring for Mum and now for Ray she admitted I probably knew as much about the management of the disease as she does. She was pleased I had joined dementia groups on and off line and also Strokenet and that I was seeking to educate myself as much as possible about the disease and how to care for a person with the disease. As Ray's dementia results in him losing more of his abilities it gets harder to find workarounds that suit both of us. If I am in a good frame of mind myself nothing phases me, if I am tired, overburdened and cranky everything seems to be so hard. Lin you are so right that it is the pattern of life that is important, both to Ray and to me. It seems that when we step too far away from the routine of every day life that is when the burden feels heavier. I do know that change is the enemy here and Ray's behaviour is often attuned to seeking his comfort zone, like the verandah, his favourite chair and his comfortable bed. And that is where he wants to be when he feels insecure.. But as usual - so far, so good.

Stu, it all takes time and money. Mover sounds like a schemer but hey! you get that. Glad it is over for you. Look forward to seeing the photos of the new place. Hope your new neighbourhood is a pleasant place to live. Sue.

Kim, you have had a big job looking after Chris so I hope this latest treatment will make that job much easier. And having a professional nurse come by will mean you can address a lot of problems as soon as they occur and knowing this should give you peace of mind. I hope now you start to catch up on your sleep too. Ray and I have set-backs from time to time too so you are not alone in that. I'll keep you both in our prayers for the next few weeks as you settle back into a new routine. ((((Hugs))) from Sue.

Fred I did some time as a hospital visitor which is what an unpaid chaplain is called in our system. So I really understand: "You can be there and experience with some hurting soul, the ministry of presence, understanding, and silence. You can weep with those who weep. " Sometimes there is pretty much nothing to do other than sit beside someone and let their grief become your grief. It is a ministry of burden-sharing. It is an emotionally draining ministry but you know you are helping someone in a way that only a few can. I guess being in that hard place with others taught me lessons that I have used looking after Ray, that sense that some things just have to be lived through and how feelings of our own have to be suspended in order that we help relieve the burden of others. It is a kind of selflessness that I guess is also a sign of maturity. And in doing this for the stranger and the wayfarer, those without family support especially, we come to them as part of the family of God. END OF SERMON. Good for you Fred for seeing this as something we all need to think about from time to time. (((Hugs))) from Sue.

Well. almost a week since the grandkids were here and it has been a relatively quiet one. Of course it took most of the week for me to get the house sorted out. We also had lunch with a friend on Thursday, only at McDonalds, but I also bought Chinese food for dinner that night which made it special. I do that mostly on the spur of the moment and usually on a week where there weren't many bills to pay so there is some left-over money for treats. It is hard to give a diabetic like Ray treats as we mostly think of sugary foods such as chocolate, so Chinese food is a special treat Ray can and does enjoy. Today Trev had some friends visit, he brought them home off the train, we moved to different parts of the house to give him time with his friends. We had a family room apart from the living area in a couple of houses we lived in before we moved back here. I am thankful for the front verandah and the back patio as they give us alternate sitting spaces. Sitting out the back I did notice a lot of weeds in the pot plants so when Ray went to bed I went out and tackled some of those. It was quite warm in the sun so it was a pleasant way of passing time in a good cause. I have suddenly realised I am used to giving Ray the insulin in the morning and showering him at night. At first both jobs seemed quite hard and I fussed over them. Now it is something I do. In the morning I get up, dress, lay the table, set up for breakfast, give Ray his insulin etc. At night after dinner we generally watch some tv, then when he is tired I set up Ray for a shower about 8.30pm, give or take half an hour, shower him then help him off to bed. It is a process not a pain. Of course it gives me less freedom and mostly I don't go back and turn the tv on and continue watching as it is half way through the next program by the time we are finished. But that is an option if I want to do it. At dementia support group this week we got an interesting talk on how to visit in nursing home/hostel situation. It applies mostly to people early in dementia but could be adapted for anyone in a long term facility I guess. The suggestion was for an hours visit. The first 12-15 minutes should be devoted to talk. This is even in cases where the patient /resident can't talk. It is like you coming home and telling your mother about your day. I probably do this first with Mum. It is a synopsis of my week. I first say how glad I am to be sitting with her, tell her how well she is looking etc. Then I talk for a bit. Sometimes she'll look at me from time to time. I suppose someone with aphasia might do that too. Then the next 15 minutes is a sort of "show and tell" he suggested magazines, a picture book, photo album, letters, anything that the person might find interesting. He told us how an uncle used to be a train enthusiast and how he took in magazines about the railways, collectors books, and even an engine or two as objects of interest. He told how another lady from one of the groups he had been involved in previously made up books of family photos and told her mother stories about each person. If any of you have seen the film: "The Notebook" I guess that is a similar idea. The next 15 minutes should be movement. If it is possible this is when you should take them for a walk, help with therapy, range of motion movements etc. If the person cannot get out of bed it is fine for you to move around a bit as this means they will follow you with their eyes at least and register the area around the bed and away from their usual focus. Even a walk to the window to look at the view will add interest to the visit. This was a new idea to me although I was a hospital visitor for a few years no-one had ever suggested this before. It wakes the visitor up a bit too as it is too easy to relax and get sleepy if you sit still too long. The last fifteen minutes is sensory, so aromatherapy, relaxation exercises, maybe bring a favourite CD from home and listen to it together. He suggested a sweet treat of some kind and said the best for little olds was a couple of marshmallows. I used to give Mum a chocolate but stopped for some reason so will start that again. Not too much sugar though, if you are leaving a person hyperactive the staff will not thank you for it. I find that this kind of process suits me as I don't have to think before each visit to Mum: "What will I do with her today?" I can just think to myself, maybe one of the photo albums and a couple of chocolates will do as my kit for today and take the rest of the visit as it comes. Visiting should be enjoyable to both parties after all, or after a while you dread going. It is a long term project for me as Mum has been in care for almost five years now and I visit her twice a week. I think most of the above would suit for any long term placement with variations to suit the personality of the visitor and the visited. And so life goes on, one day at a time, one foot in front of the other. Hopefully for the foreseeable future.

Hi to the Kiwi Bird's Mum and hope it was all good eating at the BBQ. Our day was nice today, temps gradually rising so a good day to attack some of the weeds in the garden. I'm glad you have gone back to being able to fish alone. I know the difference it makes if you are the kind of person who likes your own company. One of the things I miss now looking after Ray is simply being by myself for a while. Pre-stroke we lived a lot of our time in separate pursuits, now we are always together.. Give Leslie's mum a good time in your wonderful part of the world and she'll want to come more often. Just enjoy being part of an extended family. Sue.

David, what a lovely story. Ray used to be a Fisheries Inspector out on the freshwater rivers of western New South Wales. Fly fishing was common in several rivers west of Canberra when he had Yass and district although it is more common nearer to the dividing range. I guess in the late afternoon it is much as you describe it here with the sky being brilliant before it faded into black. Thanks for the memories. Sue.

Don't think I could manage a tornado - how about a BIG RED TOMATO? Just rolling in and over you all? LOL There are going to be bad days - I say OK days and GO AWAY days. I think babies are lovely, even the unexpected ones. Sue.

I managed to post the same comment twice! Must be tired. :yadayada: Sue.

Ken that is really good. I hope you soon get to the stage where the front gate, the driveway, the back yard are all accessible to you without Kathy having to be there. Just having Ray walk to the car by himself or walk through the house to the back door when we need to go out is important to me. They are little things we would take for granted except that for a while we used the wheelchair in the house so I know how precious going it alone is for Ray and how important his independence is for me. You have come a long way in what must have seemed like a long time for you, but it is regaining function that counts, not the time it takes. Cheers mate, Sue.

Picture of proud Granma and baby posted in the Gallery. I had the little ones till Sunday afternoon when their parents and new baby brother came and packed them up and took them home. This morning Ray and I had trouble waking up, I think because we had Alex in our room we hd become used to him acting as our alarm clock. It sure is tiring looking after the little ones, but I am so glad we were able to do it. Sue.

George, it is good you just blog about every day life now. It is good to hear there are so may positives in your life now. I blog the stroke stuff as it is in the acute phases and then level out to what we did this week too. I think that is what a blog is for. Nice fishing, I'd have liked to have been there with you on that expedition. Sue.

At last, grandchild number five, grandson number three Oliver Anthony entered the world at 1.41pm yesterday 9th August. Mother and baby doing very well, father exhausted as he sat up all night with mother. Very proud big sister Tori is very excited and wants to see him as soon as she can but small brother Alex as yet unaware of what all the excitement is about so I guess the reality will dawn on him when this small creature cries and he realises it is a new baby and not one of Tori's baby dolls left around the house. We had a busy day yesterday,Trev took Tori to school but Alex ( see photo attached) was home all day. He got up about 4am so by mid-afternoon Alex and Granma were very tired. We had to go over and collect Tori from school so Pa Ray did not get an afternoon nap either, so he was very tired too. Trev and Steve came over in time for dinner so we had pasta salad and sausages, a quick and easy meal. Steve was wanting to go home and sleep, but torn between that and staying to play with the kids for a while. He says he really misses them. Tragedy struck late-afternoon when Tori jammed her index finger in the exercise bike between the cog and the chain and squished it badly. Loud cries and dramatic statements followed but ice and pressure did the trick and deadened the pain but not before she had howled like a banshee for a couple of hours straight. I suspect the finger was the presenting problem but the drama going on elsewhere in the family had finally impacted and the tears would not turn off. There was a certain amount of guilt too as she knew she should not have undone the catch that prevents accidents from happening. She got up this morning and the finger works, it is just a little sore and discolored at the site of the injury. It seems there is so much emotional impact with the birth of a child. I couldn't take it all in yesterday and although I took all the details down and phoned, emailed and passed on messages about his birth I didn't really believe he was here until I saw him today. Then as I cuddled him and gazed at his tiny face I could really believe that he was here. He is the same as the others in face shape but different in other ways, very dark eyes which will probably be brown, sqiggley curls plastered to his head. He has long fingers and toes so will probabaly be tall. The important thing is that he is healthy and so is his Mum. He liked his Granma though, I could tell, he cuddled in real tight and went to sleep as soon as I started to rock him. My daughter in law likes me since I became a Granma, as a mother-in-law I was okay but as a Granma I am much loved. It is funny how much she has changed during the years since she first gave birth, we laughed together today when she said: "I wasn't going to have kids and here I am with my third. I think I had better find out how to stop!". We did get to have a good talk as I stayed a couple of hours and the only interruptions were the nurses coming and going doing the usual second day checks on Mum and Bub. Soon the house will fill up again as Ray comes home from his Scallywags group, the kids and their father return from school and pre-school and Uncle Trev comes home from work. Life will flow on in its usual way. And that is good too.