swilkinson

Unfortunately I developed Alice's cold from a week ago. By Sunday night I was sick and have had to spent three days at home. Hopefully tomorrow the coughing will have stopped and I can venture out again. I cooked today to put food in the freezer, that makes me feel at least of the the days wasn't wasted.

Tracy, it is hard when someone you love has a terminal illness but remember we are all ourselves right to the end so make the visit, smile through your tears and tell him you love him. It is hard but it is doable. And if you cry I am sure he will understand. Hug your Aunt too as she will appreciate that compassion in you.

Glad you found the reason, scary problem otherwise.

Please do think of me as giving you a big hug too. I hug some of the widows in my church, I know it is the only hug they will get all week. Yes, you will always miss your brother and it is logical you also miss the boy you thought of as your son. I do understand that. Just try making a few small changes in your routine and see if that helps. Sometimes it does. The therapist cannot help you if you feel no connection so maybe see if you can find someone else. I was lucky with my grief counselor as she was trained to be a listener as I was when I was on the Suicide Line so I understood what she was trying to get me to see. Keep on blogging, it is another way to sort things out in your mind. Hopefully you get some peace of mind.

I had periods of anxiety after Ray died. When I was first widowed it was difficult to know what to do and so I did whatever was at hand to do, which seems to me that is what you are doing now. I found the solution for me was going back to making lists. I would make a list of what I expected to do in a day and just work my way through as much of it as I could handle, sometimes that was very little, other times more. After a while I could do it without making a list. By then I realised that how well I was doing did not depended on what I thought I should be doing but rather simply that I achieved one of the larger jobs (like the laundry or some cooking) every single day. I think it is better not to have too many expectations of yourself and understand that whatever happens you are just doing your best.

Hope things are better soon. (((hugs)))

I have just got past another difficult milepost, Ray's birthday. Funny how now I am a widow all of those special days cause me to be teary and mindful once again of our loss. I know it is almost four years since Ray died now but in some ways it still seems as if it is recent. There is some healing in time, it is much less painful to recall his passing now but still I miss him. I miss the person I was married to for 44 years, I miss the young man he was when we were courting, the middle aged man I worked alongside and raised our children with, the older man who had the strokes and needed me. Yes, even the hard parts of caregiving seem precious now I look back on them. We were a couple for so long, Mum and Dad or good old Sue and Ray to family and friends and we were co-workers and colleagues to many. For 44 years we were husband and wife through good times and hard times. My memories are full of never to be forgotten moments Ray and I shared. I just had a week out west with my son Trevor, I went out this time to spend Father's Day with him and his little daughter Alice. First he came the coast and spent a few days with me, it was his first trip back to the coast for a couple of years. After he had done a few small jobs for me he went through the cupboards in "his" room and found some of the things he had wanted to take back with him including a big box of Lego and packed it all into the car. He always collected the family Lego together and made sure every piece was kept. His daughter Alice is four now so the Duplo big blocks can be put away and the "real" Lego taken out again. He also sorted through my kitchenware for a few non-technical tools like those old hand wound egg beaters. He lives in a small house since his separation and divorce and takes good care of it. He is a good cook so also took some of the cook books. Thursday the 1st off we went on the 13 1/2 hours drive back to where he lives. The daylight driving was good but after it was dark the number of goats by the side of the roads, running across the road etc was pretty scary. There has been a lot of rain and there is a lot of long grass alongside the bitumen so I guess it is like a smorgasbord to them. Lots of groups with kids at foot too and although they are a pest I would hate to kill one. Trevor is used to western driving so was not fazed by it all but I had a few moments when I was sure we would collide with one but all was well and we reached Broken Hill safely. I flew home on Wednesday morning arriving too late to go onto chat due to some delays. It was beautiful out in big sky country, still very cold (close on freezing) at night but I piled the blankets on in my little caravan and that helped me keep warm. And the days were lovely. The temperatures might not reflect it but the sun always seems warmer out there and it was wonderful sitting out at night under the stars while he BBQed. It is one of the things I miss from my old life, Ray was a great BBQ cook and BBQs were a regular part of our life up till 1999. It was the way we celebrated birthdays, special events, family gatherings. Being a country with a long summer gas BBQs are a feature of every back yard and in summer the smell of BBQing is the scent of the night. Trevor cooks chicken wings with garlic and cumin and it is a great sensation tearing them apart and eating them out under the stars with baked potatoes and sweet potatoes and a few other foil wrapped veggie combinations which are baked in the coals. The weekend with Alice was marred by her cold but we still had a lot of fun with her, she can be pretty lively. I feel some empathy with people who don't see their grandchildren regularly as that was me for a few years and now I make the effort to see them as much as I can. Life is too short to worry about how often to do things like visiting, if you can manage it and can afford it, just do it. I should apply that motto to all the people I have promised to visit and still haven't I suppose but like everyone else I find time just slips away and half the time I have done nothing of major importance just gone on with the routine of life. Like today I did the Friday Coffee Morning at Church, chatted to some of the ladies in our charity outlet ( we call them Op Shops) and then after lunch did some gardening, the weeds having grown exponentially while I was away, and there is another day gone. I always take time out to meditate while Trevor works, there is reading also to fill in the time, and he and I sometimes do some walking and also take Alice to the park while she is there. I notice it is the little things she gets most joy out of, like walking along the laneway to where the woman who works for WIRES ( a wildlife preservation group) provides a home to all injured Shingle Back Lizards that are rescued from the local highways. This week there were 23 of them in the enclosure, Trevor estimated 18 but without being able to count Alice said 23 and she was right. They are cared for and released after three months. They love to walk slowly across the roads and unfortunately drivers either do not see them or just don't slow down for them to cross so many get injured. Being in a different place and having time to think about life does allow me to look at life in a different way. The simpler life is the better it is I think now. I still need to let go of a lot of my past activities to make my life simpler. I have loved belonging to so many groups over the years and hate to let some of them go but in order to have time for myself that has to happen now. I will be 70 next year and honestly the years do take their toll and I do not have that long term energy I used to have and an afternoon Nanna nap is occasionally the solution. So if I appear here less frequently it is not because I no longer love you all or care about your welfare it is because other things are happening in my life that need my attention, including visiting family and friends. Spring is here and like the birds I have a nest to rebuild and refurbish. I also still need time to declutter. Wish me luck as I make a few changes in my life. I am stepping down as a Chat Host from the end of this month. I will never forget what this site has done for me and the wonderful people I have met that have had a real impact on my life. I will continue on as Blog Moderator and remain a part of this great community. So it is not farewell it is just see you soon.

Scott, you always seem to find out how to get around your deficits, you are clearly persistent which is a great thing to be. I hope the new neurologist turns out to have some insights into what is causing your condition to deteriorate and the pain to escalate.

There is a lot of life to live yet. Enjoy going out as much as you can.

Fred any long term illness can be a burden and you can feel it is holding you back but I have seen so many stroke affected people like yourself who have still made a huge difference in the lives of others. It is not the journey that we thought we were embarking on when we were young but life is what you make it I think so every part of our life experience has a value. I am so glad I found this site and met people like you. You have made a difference in my life for sure.

Tracy that procedure does sound like torture. I guess it is aimed at making you safe in the dark but I haven't heard of it being done here. Ray would have bellowed angrily rather than cried I think, but I too would have cried. I would hate that kind of treatment. Some of the things you are told to try to do in rehab do emphasize your weaknesses rather than your strengths and take you to a dark place in your mind and i cannot see that that is a good thing. But you are an overcomer. Good for you.

Pam, it probably happens over and over that the voiceless have their rights abused. I was so glad with Ray that the other in his room told me what was happening with him, reported on any neglect and mistreatment issues so I could go and make inquiries myself. I always felt so helpless when I left him each day as I knew it was my presence that made a difference, made the CNAs wash him and dress him nicely and comb his hair because i could come by any time and make a comment on his appearance and ask "who dressed him today?" Good friends are a protection and yes we shouldn't let bad behavior slip pass unrecognized, Unfortunately those insiders are without power and there is little else that they can do.

Pam, blogging is therapeutic. Somehow getting all your feelings down in black and white also brings some peace. You have had a bad summer which is a pity as summer can be such a delight. Try to get outside as much as you can, I know what a difference that makes to the ladies I visit in the nursing home. They tell me of the birds they saw or what new flowers are out, topics of conversation other than aches and pains makes the visit happier for them and the conversation more sustainable for me so I stay with them longer I guess. Congratulations on the soon to be grandchild. You have had a lot of help with rehab through your asking for more. You have never given up despite what you have been through and now that is working for you. I have heard of the rope and buoy exercise as one of my nephews did that one. I think you can do some others using the computer now too.As a woman I understand about the dressing up and going out too, it is the change of scenery that lifts your spirits and reminds you that you are part of a wider world.

Tracy it sounds a lot like the exercises Ray did. In Occupational Therapy after his major strokes in 1999 he did things like make toast (which came in handy when I was sick and he was hungry). and simple tasks like setting out knives and forks. Unfortunately subsequent strokes meant a relapse and a lot of things just slipped away each time. My message to all who have had strokes is to look after yourself, eat well, sleep well, exercise as much as you are able to and keep healthy.

I thank God you are still here too Fred. Enjoy your therapy and get as much motion back as you can. You want to go on living a good life for as long as you can. I'm glad you have the two pups for company, having company be it animal or human makes such a difference.

Nancy, coping is all about knowing what you can handle, at your age and situation I would probably be much the same. I am glad you get some joy out of life, it is all we can do. Thanks for the update, we are a community here and I do feel concern for those we don't hear from for a while. I know there are rarely happy endings but if you are reasonably contented with your life as I am then that is a good life.

Any kind of heat can do that, over hot baths or showers, sitting in front of the fire, sitting in the car with the sun beating in, so always keep a glass of water by you to rehydrate. You don't necessarily think of that mid winter do you?

I well remember the medical merry-go-round after each major stroke Ray had. I always felt as if someone was stealing our life, but in the end it was the right thing to do. After the majors in 1999 he had eight months of PT and OT in the Rehab Unit and then at home. That was what made a difference to our lives as he got so much back. Unfortunately after each subsequent strokes he got less and less PT and OT and so less and less back each time but I guess that is the way it goes.He aged very much too.

Tracy, you had a hard time getting a diagnosis, that is so wrong. In this day and age everyone involved should have known there was a possibility of stroke and done some simple tests, as your neurologist finally did. With one of Ray's strokes he was taken to hospital and released at 3am!!! The Team on duty could not decide if he had had another stroke or not. Make me wonder about training. The neurologist who knew Ray confirmed by MRI that he had had another stroke but said: "Sometimes it is hard to tell.".

How very true Asha, it is those who stick to an activity until they get it right who become the thoughtful and reliable people in life. Stickability sometimes outweighs talent in becoming an elite athlete or an artist of great creativity. Many people will tell you they didn't like an activity at first but by becoming familiar with the procedure they learned to love it. I'm glad you had a good weekend and learned a new lesson from your guru and passed it on to us.

I spent all morning watching the Closing Ceremony of the Rio Olympics. I didn't watch the Olympics as much this time as I have in the past as I think like so many I got disillusioned by the scandals and the drug cheats. I always had such an admiration for those who won a medal, I sat up late watching those Olympic sports in which people made a huge effort to train themselves and I of course wanted our Aussie team to be the best. I was unaware until the past few years of the amount of cheating by using drugs in sport until it became big news. From then on I guess I questioned who did win by cheating and who won through honest effort. And that took the gloss of the Games. I've always seen the battle back from stroke as being like an Olympic sport, the trainers are the therapists, the supporters are the family members who act as a cheer squad and the athletes are the survivors, striving to get back to their old normal or creating a new normal, Like the training required to be an elite athlete it is a matter of many years of training not just a few days before it happens and that being a journey full of frustrations and problems. Reading the posts and blogs on here you realise that it takes a lot of will power to get better and some people do not have that, their will to recover is just not there after the stroke. This can be frustrating for themselves and their family but we can all strive for a personal best in some aspect of our lives. I have always loved the story of those who contestants who come from countries without suitable sporting facilities, who battle from a poor childhood with little encouragement to being an Olympian, not maybe a medal contender but the best their country has produced in their given race. It is delightful to see that it is not just who has the most money spent on them who wins but there are a lot of other factors too. Of course good training does make a huge difference and you can see that in the contestants who come from the richer countries so it is not quite a level playing field and that is a pity. So I don't look at the medal tally but look at the effort it has taken the contestants to get there. I think that is my attitude to life too. From an early age I was taught to be a helper and that some things we do do make a difference in the lives of others. My Dad would mow lawns for the neighbourhood seniors, all they had to do was pay for the mower fuel, my Mum would go to their homes and cut their hair. My Mum would get me to run errands for old ladies. She would say: "You have young legs" and that was enough reason in her eyes. I still run errands for old ladies...though I am approaching the "old lady age" myself. I still have good legs, not legs of beauty but ones that are useful. And beauty is in the eye of the beholder, or I hope so. We can all help others in some way despite our limitations. One of my mentors when I was young was a very intelligent lady who had polio in her forties, which meant she left her good job in Sydney and moved in to live with her brother who had a small Used Car business close to his house. Some Saturdays I went down to be her legs while her brother drove cars back from dealers in Sydney. All I had to do was make her cups of tea and a sandwich for her lunch, in exchange she introduced me to good literature and poetry and discussed current affairs with me as if I were an adult. I gained much more than she did from those afternoons and i am grateful for that. As I watched her drag herself around on crutches with her iron legs braces I knew I was watching an act of bravery. I think that gave me more understanding when Ray had the strokes and had difficulty walking. Today it is overcast and gloomy and rain is predicted. I often try to have Mondays off as I have busy weekends now. It is a day when I like to catch up on jobs around the house. I did go out to do some gardening but there is a bitter wind blowing so I guess there has been snow down south. That is why I gave myself a break and watched the Closing Ceremony with a clear conscience, nothing much else I could do. Except there is the cleaning and the ironing etc but I am blinkered and cannot see those jobs waiting to be done...lol. And that is life as a retired widow, do it, don't do it, my choice. I hope you all enjoyed the break from bad news and watched your favorite sports in the Olympics, there were four TV stations covering it this year for me so lots of choices for what I wanted to watch. I might just boast modestly about the Women's Sevens winning their first football gold medal. Swimmers come and go but the women footballers who won that gold will boost women's sports for years to come. And we need that as men's sports are sponsored at a much higher rate than women's sports are here. And we do need girls to play sports, to keep themselves fit and disciplined. And so I was glad it was gloomy here but glorious in Rio as I had a good reason to watch the pick of the youth of the world who engaged in the Olympics having fun together as they said their farewells. Bravo.

Did you mother not tell you to be careful with sharp utensils...lol. Glad you went and got it fixed up Kelli but seriously on Plavix you do have to be careful of cuts so more thought about what you are doing when using sharps next time please. BUT do do as much home cooking as you can , it is absolutely worth it.

Tracy what you have written makes a lot of sense. From time to time we all need to slow down and reassess the situation. I am a widow now so my time is my own but I know I always overfill it, then I have a reaction, get overtired, start berating myself for not coping etc. Each decade we need to reassess what it is appropriate for us to do. As I near 70 I need to do what 70 year olds do not what 50 year olds do if I want to make it to 80 and beyond as a healthy woman. Thanks for your insights, we all need to hear it one more time. Sue.