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HostSue

Staff - Stroke Support
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  1. HostSue

    Kelli, many of us will mourn Denny as a personal friend. He and I had many chats as we did a chat around the same time. He often came as a "guest" to Caregiver Chat. I had a great admiration for Denny's dedication to his work with stroke survivors on Strokenet and his great love for his wife Peg and his family. Farewell old friend.
  2. HostSue

    Looking ahead but not too far

    Every now and again something jolts me back to reality, today it was the post on Facebook by Steve Mallory announcing that our friend Denny (Dennis Jeffries) had died. Denny and I talked frequently during my years when he was a chat host on Survivor Chat and I was chat host for Caregiver Chat. He was also my friend on Facebook. Like so many of my friends on Facebook and Strokenet we never got to meet in person but nonetheless we were friends. In this modern age this will be so for many of our friendships. My heartfelt condolences to his beloved wife Peg and their extended family and all those who knew him and valued his friendship. As I minister to the older church members in my own church and others in the organisations I belong to I am probably over familiar with death but never inured to it. I know each death robs us of a piece of our history and breaks down some of the bonds between us and others. All we can do is to remember those friends who have passed, remembering why we liked them, what we shared with them, remembering all that was good about that particular person and the ways in which the friendship enriched both our lives. We also need to remember those they left behind. I have just had my daughter and her family here for the weekend. Not her husband as he had injured his back trying to start a stubborn water pump so he stayed home for some bed rest. It was only a day's notice so it was unexpected but turned out to be a really fun time. My grandson Chris starts University this year so is a grown man now, his sister Naomi is 14 so quite a young lady so it was funny to see them playing with the toys Alice aged six had got out to play with. The Nintendo Wii got a bit of a workout and more so on the second night when Pamela and the three Adelaide cousins joined us. I guess that is when I realise my house is small when five teens and near teens are fighting to see who will be the challengers in the new Wii games. I do so enjoy having my grand children here, every time I see them I can see the changes in them. With Trevor and Alice's visit the first two weeks in January and then all the others last weekend I have been so blessed with the amount of time I have been able to spend with them. The Adelaide kids are going home in a week's time to start back at school, they are all doing well according to their abilities. I love them all and want the best to happen to them but have no illusions about them. Like Ray and I they will have their own struggle with life. They know Granma prays for them, but only two fully understand what that means. Summer has been very humid so it is out shopping etc in the morning and home in the afternoons. I have to keep hydrated and remember to take some time with the affected leg elevated. I have just lined up all the appointments and tests for the second week in February prior to seeing the melanoma specialist, with more tests before I see the neurosurgeon in March. I figure this is all for my good, remembering especially that this is prolonging my life so I can look forward to seeing my grandchildren grow up. I have felt the negative effects of wearing the body stocking toes to waist bevause of the humid weather but try to remember that too is to ensure I live as full a life as is possible. On the whole life is good and I have many blessings to count. I have a roof over my head, food on the table and many good people behind me challenging and supporting me. At my age I know that as long as we have love in our lives we are truly blessed.
  3. HostSue

    Pam, I don't know what to say apart from I hope it is temporary. I have not had this happen to me but Ray was in a diaper for several periods of time over the years and then for the last 15 months of his life. One of the reasons I went to the nursing home daily was to make sure he was clean and dry. The care is so much better if you have regular visitors, it seems to keep the staff on their toes. I wish I was close enough to drop in from time to time.
  4. Yes. One of the reasons I blog is to look back on how far I have come. I am looking at who I was and who I have become. It is like the growth rings on a tree reflecting the good years and the bad years. I can see that also in those other members of the blog community who have been blogging for a long time as you have ASHA. I can see that post traumatic growth in both of us.
  5. Here we are in 2019, a New Year to think about the future, try to remember the best things from the past and use the skills you have learned to improve the present. If you haven't done so already why not start a blog? It is a good way to to record what is happening in your life, to vent if you need to, to seek advice or to offer advice based on your own experience. You might like to comment on some of the good things that have happened in your life after the stroke. Or how you feel stroke has impacted on your life, I have often done that in my blog. Start a blog and become part of our Blog Community.
  6. HostSue

    Wow! That is a miracle. Not a cancerous spot just a little white one. So pleased for you. And helping a person to get a phone, passing on your good karma, you ROCK!!!!
  7. HostSue

    Never a cool Yule

    Tracy wrote in a reply to Janelle that it is hard to get her head around the fact that we in the southern hemisphere are in summer and a hot one at that. It makes the Christmas we have very different from what most of our readers are experiencing. And it is hard to imagine unless you can think of the Fourth of July and Christmas coming together. Then add mosquitoes, bush fires, heatstroke and crowds of people flocking to your town from the nearest big city and you are starting to get a picture of my kind of Christmas. Despite all of that we, the Aussies and those who have made Australia home, love it. I did go to my daughter's place for a couple of nights, had a good time without too much trouble, enjoyed the Christmas Eve supper my grandson prepared and the lovely Christmas lunch my son-in-law cooked, going to church with the family etc. I got quite a collection of small gifts, the flavoured teas and home made jams being my favourites. As the grandchildren are now 19 and 14 there wasn't the noisy excitement of younger children but it was still nice to see them open their presents. My daughter drove me home late Christmas afternoon as they were heading off to see their other grandmother the next day and in a way I was glad to be home. The run-up to Christmas was very busy this year as I did extra shifts on the Lions Club raffle in our local shopping centre. One of our younger Lions had a stroke the week before Christmas and I replaced him as well as another Lion who finished up in hospital with pneumonia. We all push ourselves too much and end up with stress related illnesses if we are not mindful of the pressure. Anyway all that is behind me now. So my word for this year is one I have had before - ENJOY. I aim to 🎉 celebrate the life I have regardless of the way the year influences my health etc. I am learning that I will only be happy if I plan to be happy. I can no longer guarantee good health, or prosperity or even what will happen from day to day so I just have to accept that. I am blessed with people who care about me whether they voice that or not. I found out through the journey of the last year or so that people express love in many different ways, through flowers, food, visits , phone calls and dropping by with a cup of my favourite coffee. And of course emails and comments on social media. Some here are some thoughts for the year to come. Firstly to stay as positive as possible regardless of whether I feel lucky, happy or in control. Secondly to go on loving people and in whatever way I can to help and support them. This will include keeping in regular communication with some people I have neglected this year. I found out just before Christmas that one of Ray's favourite cousins had died five months ago. I guess I need to still send letters but to follow up with a phone call if I do not get a response rather than doing nothing and getting bad news later. I have a more exciting period coming up with a visit from my younger son Trevor and granddaughter Alice happening next week. I am not planning life for the next two weeks after that at all, I am sure we will be out and about, at the beach, visiting her cousins, having picnics and enjoying the summer. How my ageing body will stand up to that I don't know but enjoy it I will. That is a promise. And hopefully without negative results. So I wish you all a healthy, happy and prosperous New Year but if it doesn't turn out that way I wish you the strength to carry on anyway.
  8. HostSue

    I have Enjoy as my word again this year. I think I let the leg operation and dissection dominate my life last year and am not going to let it take another year of my life. 2019 is mine to enjoy. Asha, with your support and that of your husband and extended family your son will be fine
  9. HostSue

    There is really nothing we can do about our past and we've all done things we are ashamed of, worried about or find distressing when we look back on them. But somehow we have to reconcile that and move forward with our lives. I have to say to myself sometimes" Not my fault, not my problem." Naturally I hope the other person can see that too but if they can't I try not to stress about it. I guess that comes with age though. Hope you have a fantastic year Tracy. You can think about what others say but you don't have to accept responsibility for it.
  10. HostSue

    Tracy it is heat, hot days and too warm nights, but I do fall asleep because I am tired. In our area crowded car parks because we are a tourist spot about an hour and a half from the northern suburbs of Sydney. Our beaches are crowded with sun screen baked kids and parents with sunburned faces, but we don't care because tourists boost the economy. It is a great place to live.
  11. HostSue

    Mixed news

    It is a little hard to write this blog for many reasons. One is that I don't have a working computer and am typing this with one finger on a tablet, another is that I am not feeling good about life right now. I went for my four months check up today and by the way the radiologist spoke all is not well. So I go for more tests next week. I just hate it when a medical professional pats my hand and calls me "dear" as that usually means there are problems ahead. I had a good Christmas with five of my grandchildren together with my daughter, son-in-law, his brother and mother, my fomer daughter-in-law and several others together for what turned into a real feast. I had seen Trevor and Alice a couple of weeks before so although they were not with us they were by no means forgotten. I miss Ray at every family event but I know Craig's mum was also missing her Don so felt somewhat for her too. It was good to be in lively company and enjoy family time. I think in a way as time goes by I miss Ray more when our families get together. I understand now why some families put out an empty chair at special family events as it felt to me as if there should have been an acknowledgement that the two grandfathers were missing. I think Craig's mum felt that way too. It seems sometimes as if part of me is missing and it makes happiness seem like something that used to happen rather than something that happens now. Is life still good? Yes it is. My word for this year is NEW and that is because it is NEW every morning, and whatever is happening in my life I want to go on feeling that way. I mean to turn what could seem scary into something exciting. I want to go on enjoying life. Today may have been scary in a way but tomorrow the sky may be blue and good news of some sort may brighten my day. I don't know how far ahead I can plan life but I still need to make the most of this summer. I have plenty of gardening to do, the elephant still needs painting, and there is so much to do in the house. I have friends to see locally and further afield so I need to go on enjoying what I can. The diagnosis may not be as bad as I am thinking right now. Time to put my Big Girl pants on and keep on going. I know a lot of people are much worse of than I am and really at 70 I have plenty of good memories to look back on so why am I worrying? I guess because I am human, and will always love life and want to live with health and wellness . But if that is not the next part of the journey so be it.
  12. HostSue

    Pam I hope you are pain free and were able to sleep after the procedure. One day at a time my friend. I know how tired you can get of being strong so relax and know that many are holding you in their prayers.
  13. HostSue

    Noises outside

    On the whole I think I cope with being a widow pretty well. But as soon as the warmer nights start we have noises outside. As a widow and even before when Ray was living here still but was unable to get quickly out of bed I am the one who goes off to investigate. It may be possums on the roof, dogs overturning the bins out on the road or a group of noisy teens coming home from a party, rarely is it something life threatening. Sometimes I just don't see the cause and I might go back to bed and worry for a while but usually I am satisfied. Tonight there is a wind so all kinds of rattles and bangs but all ones I know the origins of so I am okay. I always say we all plan for retirement but not for old age and I think that aplies to me now. I have got a lot slower since the last operation and I know that while I can still manage housework, shopping and the ordinary tasks of life I cannot do maintenance so in the New Year need to find a way to do the jobs I can't accomplish and that means find some tradesmen to do them. This is going to be a considerable expense but as I don't go on holidays much now I can use that money. We also don't plan for widowhood so I am now putting some thought into my future again. There are two main choices, staying in my own home or some sort of retirement complex. I think I will maybe consider downsizing to a smaller place too. It seems unlikely now that's one of my children will move closer so I am probably not going to have help in this. It is not that they don't love me but it doesn't occur to them that I need help. And I do find things more difficult now since the leg operation. Every job that involves bending and lifting takes a bit longer than it used to. And we don't take our future needs into consideration. I am thinking of our need for help and support. Through pastoral care work I deal with the elderly a lot and I can often now see my own needs in the ones I am helping. The need for companionship is high on the agenda for widows. It is easier during the day as public transport, taxis and lifts from friends help if you no longer drive but at night and at weekends that is not as available so there is a difficulty in meeting up with friends. Technically speaking the family should fill the gaps but in fact few have family living close by. I hear that from the little lady I pick up for church and others in my craft group so I am aware of how it will be for me if I can no longer drive. I wondered if I should express these thoughts here or if I should write them in my widow blog but I think a lot of people on here also struggle with living alone as I do or wonder how they will cope if it ever becomes their life. For those of you who have someone living with you, cherish that situation. Alone means some extra freedom but too much time alone is stressful, particularly on those nights when the wind is up and I become super aware of noises outside. The good news is that I do have people who love me. They might not be right here but they exist. An old friend in her 90s rang me early this morning to tell me she does. She had received a Christmas card from me and rather than try to write a letter had rung me instead. I know there are people who love me, family and good friends, I am not discounting that. But it isn't always in the forefront of my mind. To my mind I am very much alone. My girlfriend who died recently was one of the people who I could ring on a night like this and it is one of the reasons I will miss her. I miss a lot of people who have been good friends in my past years. It is not the same without them. Sometimes I think the Christmas season is hard on us as people who have cared for others. I know I never really thought about the impact before I was a widow. As a caregiver I was simply too busy. Now I am on my own I have too much time to think. There is a car alarm going off somewhere in the neighborhood, another party up the road, the sound of music somewhere further away. Somehow that accentuates the aloneness I feel. I probably need to put on some music of my own and block out the noises outside.
  14. HostSue

    Thanks Tracy, our journeys are very different but we have a lot in common. I have just heard my next door neighbor come home. We don't speak often but I like to know he is there. I am out and about a lot of the time but still feel I am stepping into an empty shell when I come home. But I am used to it now.
  15. HostSue

    Most of my life my friends have been older than me,older and wiser, and that has helped me in so many ways. I hope you find the same with your new group of friends.
  16. HostSue

    It is as usual accepting what is and making contingency plans. Two pads, one on, one in your bag. I had to do that with my pregnancies, you get used to it . Sorry you are going through this at 46. Being away from home and not in your comfort zone can make the problem worse, I know from my experiences travelling with Ray. But if you enjoy yourself it is worth it.!
  17. HostSue

    Pam I am so sorry, this is just one more burden to bear. I would ask what the prognosis is, what rate of spread etc then make the decision. It is the way I work through things. But I do not have your pain so there is no comparison. You need compassion as well as information, I hope you get that.
  18. HostSue

    Good looking
  19. HostSue

    Tracy, I find at this stage of my life I am grateful for so many things. Circumstances are not always perfect but I believe in hope, and hope makes life doable. I was glad to find out from your blog that many people are helping you through the lean times you have been through. (((hugs))).
  20. HostSue

    ASHA, I love the story of your travels. Your hubby has a wonderful sense of humour and he does take good care of you. I am so glad you got to see so many family members on both sides. Good you were not the one to fall this time. Enjoy your reorientation, you might discover a whole new aspect of your home.
  21. HostSue

    Another milestone in WAGS

    Last weekend was the Women's weekend of the Stroke Support group WAGS, I think my 10th full weekend although I have sometimes just gone to the Friday or Saturday night, depending on the circumstances. I remember one year I got my older son to look after Ray so just went from lunchtime Saturday until after the dinner. Of course the past six years I have gone as a widow. I shared with another younger widow this year as I did last year. She is only mid-fifties and still has children in her care as her husband died young. She enjoys the weekend as a break from her usual routine. One of our members has compiled books of photos from each year back to 2005 the year before I joined. I really enjoyed looking through them and recognising some of the faces as old friends who can for various reasons no longer come. As usual it was a sad/happy time as we remembered those who are no longer with us, acknowledging also those who were foundation members. In every organization there are those who put in a lot of hard work to make events go well and WAGS is no exception. We are all grateful to the handful of organisers who make the weekend possible. I enjoyed the company, the food, the entertainment, but as usual especially the dancing. Of course I would love to be able to dance the way I used to but found it impossible to be as balanced with the left leg musculature being so different now from the right. But I managed to dance for most of three hours so I was very proud of that achievement. And it was wonderful meeting up again with such wonderful, brave indomitable spirits, both caregivers and survivors. They are an inspiration to me. Coming home is always a let down and I have been feeling that this week. I am busy enough, on the Lions Christmas raffle two mornings already but my trip to visit my daughter and family mid-week and go out to a Salvation Army lunch today was cancelled due to her schedule. It is a thank you to the officer's parents, and thank yous are rare. And then news of another death in the distant family added to my sadness. It does seem as if there has been a lot of deaths within my circle lately and I think that dims my usual brightness for a while. It is a reminder of our built in use by date when those younger than ourselves die. Really now I have no-one to turn to when I am sad, I miss my good friend Lyn for that reason, we always included in our chats news about family members, happy and sad and I have no-one to do that with now. I think it is not likely that I will make another good friend like him. I really miss my girlfriend Jean, who died six weeks ago too. It was such a shock when she died. And without those friends from our formative years to share our memories with we are so much the poorer. I am really feeling that now. But as we know life has to go on, Christmas get togethers are starting, bring a plate to this one, book in for that one. It is not only the busy season it is also the expensive season. I have the trip to Broken Hill to look forward to and other upcoming events but Christmas this year will be with just Shirley and family as Trevor and Steven and their families have other plans. Inevitably that will happen some years. But that is when I really miss Ray and that focussed family life we used to live.
  22. I have just been on the WAGS Women's Weekend. I can say we laughed and cried, told of our journey, played silly games, ate together, played together and danced with wild abandon on Saturday night and had so much fun. The pink boa in the photo is a tribute to Terry who was her daughter's caregiver and sadly died this year. I was sad, as we all were, to recall those who were not with us for so many reasons. I have been going to this weekend since 2007, some years I have only gone on the Saturday night, some I have gone for the whole weekend as i did this weekend. Each year is different with unexpected events living in our memories. Sometimes the caregiver is called home as something has happened to the survivor, some years there is a family crisis of another kind, this year one of our ladies became ill and had to go home to recuperate. I have watched them age and they have done the same with me. They supported me during my recent recovery after the melanoma operation as they supported me after Ray died. They are caring women and I love them all. We are not the same, but we are all on the stroke journey. I am no longer a caregiver but I can still encourage them in their caregiving roles. Life for all of us is influenced by the stroke event. There is no "them and us" we realise we are all in this together and the more we support each other the stronger we become. We are not noticeably caregivers and survivors but all strong and supportive women. It is incredible what we have shared over those last ten years since I have been involved with them. This year I roomed with another widow, our stories are very different but we both know the meaning of loss and grief. We both know how to scope with whatever life dishes up to us now. We both have had our moments of fear, anger and feeling we were losing it. We talked almost right through the first 24 hours, I guess we both needed to unburden to someone who knew what we had gone through going from caregiver to widow. We know there are things you can tell another widow that your friends who are members of a couple will not understand. It was a good experience for me. Of course I also talked to a lot of others there, some I only rarely see. One of the girls who has only joined us a couple of times after becoming a member several years ago said she was so proud to say she had been away on a weekend with 20 of her best friends, I think we all felt the same way. Apart from that life goes on much the same as usual for November, church, social days, nursing home visits,meetings etc. I did a hospital visit today. It was my turn to be "treasurer" at the Lions Club BBQ this morning, tomorrow I am selling tickets in our local shopping centre (mall) in our Lions Club Christmas Stocking. There is planning to do for the Christmas gatherings and I'm looking out the Christmas cards to send as not everyone is on Facebook or email particularly older friends. I guess it is the same for most people. We are making up Christmas hampers at church for those who are less fortunate and still going on with the weekly services and other events. I am visiting my daughter for a few days next week. Always good to spend some time with my families. My left leg is still painful sometimes, mostly when I spend too much time on my feet. Of course now we have humid days now it is getting closer to summer too and that doesn't help as my leg swells. I may have to go to a local Lymphodema Clinic to find out more about that. My friends remind me that it takes time to heal, I know that but am impatient to get back to full fitness again. It was a joy to find I can still dance but because of muscle damage cannot spin around successfully so I am doing slower moves. Who cares as long as I can dance in time to the music? It is such a blessing to be able to do almost all that I could do before. Of course my age slows me down somewhat but I can laugh at the mistakes i make and my inabilities as well as my absurdities hopefully make my friends laugh too. As the song says: "Be a clown, be a clown, all the world loves a clown."
  23. HostSue

    Jay, you have come a long way since then. Good to have you as part of our Community.
  24. HostSue

    From cool days to heatwaves.

    We have just had one of the hottest November days for decades. What a difference a couple of weeks can make. The weather was still fairly wintery when I went out by train to Armidale one of our little inland cities to stay with family friends. The days were warm but the nights were cold and I was glad of the couple of blankets and heavier cover. Then one morning what looked like heavy snow clouds blocked out the sun and it really was cold so on went the winter weight jeans and jacket. I was glad I had gone out with a range of different clothes. Armidale is a University city so I went to the University several times as my friend is doing a Master of History course. Isn't it remarkable to see buildings looking like big splendid piles of bricks and mortar in an otherwise rural setting? Of course this is a thriving town set in what we call the New England district so rolling hills, good rainfall and fertile soil made it an ideal landscape for agriculture of all kinds. That makes for a rich community who could easily afford to build such a magnificent University. Such a contrast to the practical but modern University buildings on my part of the Coast. It was good to get away for a few days, I find when I am away from here with friends or family I am able to see life differently from afar. And it is good to have different conversations and to step away from purely domestic issues. I went on a visit to several historical homes and as my friend is a guide at one of them was transported back into the past to see how hard life was back a century ago not for the nobility but certainly for those who worked for them. Remember the butter churning, wood chopping, boiling up the sheets? And all done by young girls in service who also did the heavy lifting as the house belonged to three sisters and no men folk were allowed. It is good to be reminded that we are so lucky to live now with so many modern appliances to make our life easy. Okay we have to do our own housework but it is not so hard is it? I was woken up early every morning as the house next door had poultry, both hens and ducks in their back yard and the rooster crowed as early as 3 am. I even cooked a couple of meals while I was away, it was strange getting used to someone else's kitchen. But it was so nice to be out in the country, I really am a country girl at heart. Thanks for the memories. Then home and back to the routine. A couple of our older church members now have health problems so I visited one in a local hospital. I did some work in the garden the first couple of days I was home but two very hot days put that activity out of the question. It is easy to do nothing but that is not what I need to do. It must be Spring cleaning time so a minor declutter is in order. ( I think I say that every year about this time). This year has gone so fast with all the medical appointments that so much looks neglected. I wish I felt more energetic but I do feel my age now. More's the pity. On a bright note I had two lunches and one dinner out this week and one was actually a date. (Shhhh! it's a secret.) On Tuesday I get my roster for the Lions Club Christmas raffle and an idea of what else we have to put our names on rosters for. There is still plenty of activities to participate in for church, with the Friday coffee morning, craft afternoon etc. And tomorrow is my preaching day. And I still have the trip out to Broken Hill for Trevor's birthday to look forward to. I like to be busy as long it is practical. There are a couple of medical events to get over, one at the Lymphodema Clinic and one at the Skin Cancer Clinic. And then there is all the planning involved in Christmas. It is six years since Ray's death and much has changed, other friends have passed and l have some newer friends now and a different kind of life. Of course I would swap the life I have now for my old life in a heartbeat if that was an option. But it is what it is.
  25. HostSue

    Sounds like a nightmare for you. BUT you have the implant so life should get better. I think it is so much harder without someone to advocate for you as I did for Ray. I wish there was someone who could make!e all of this easier for you. (((hugs)))
 
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