swilkinson

Katrina, I hope you find answers soon, it all sounds very scary. You need answers from your neurologist as this sounds like fits or small seizures to me. Do you have some quiet music you can put on? That might alter your state of mind and relax you more. Hope our praying for you helps. Sue.

Glad you had fun Debbie. I agree birthdays when you are a caregiver do tend to be a bit of a let-down but if friends and family remember that is magic. So a year older, a year wiser....hip hip hooray!

Fred, no need for words, you are not well, the docs found the cause, hope they can fix it. (((hugs))) from Sue.

Every trial gets us nearer to solving the problems caused by stroke. Glad to hear you've been able to participate Lenny.

I love a cloud with a silver lining. Thank you so much for your feel good blog Katrina. (((HUGS)))

Katrina, you have value here for your honesty and for the lessons we learn from you about how it feels to be a young stroke survivor. Please remember you are loved for what you are, whatever else you feel bad about please feel good about that. (((hugs))).

I just love :"you can dress up a pig but it is still a pig". I can't say I would put the blame anywhere, you don't know what happened really. It was a disappointment for you and Bruce for sure, but as usual you overcame that. Good, generous people, both of you.

These were my questions in the early years of my time at home with Ray as a full-time caregiver. Who am I if I am not a worker? was the basic one. I had a responsible job and there is no way I could have continued with it. I did look into affordable care for Ray so I could have continued working but but my whole wage would have been absorbed as he was 24/7 due to his balance issues and his recklessness (inability to discern if something he wanted to do was beyond his current ability). . I wondered about at home jobs like consultant for??? but never really worried about it. I knew Ray was my 24/7 job and that was it. What I did do was get absorbed in other things, church, Lions Club, stroke support groups, dementia groups, the last initially because of Mum and then of course Ray was diagnosed with vascular dementia. In self-help and supported groups you do get to do some socialising as well and if Ray complained I would say: "i am doing this for you remember? So we can lead a better life." and his objections subsided. Now is a good time to look to the future and see how you can have a life where you do get some of what you are looking for. If you can't find a group that meets your needs start one, even if it is four stroke caregivers and a once a month meet up over coffee it will fill the need. You have to get what you can out of life, the stats say that the caregiver often dies before the one cared for so use the time you have to get the life you want, within the limitations you have. Sue.

I think in 44 years of marriage and 13 years as a caregiver I lost who I was supposed to be. I am slowly rediscovering my likes and dislikes and without changing too much will slowly adapt my surroundings to reflect who I am today, still a mother, grandmother, friend and companion to some but no longer a daughter or a wife. It is hard to know what a 66 year old widow is supposed to do but for me that is simply get on with life and see what happens. Who I am is still involved in being a church worker and a member of many organizations. I still want to feel that the things I do are worthwhile. But I think there will be another element when I have matured a bit more into the next stage of my life, I want to feel that I am Sue who is okay on her own, strong enough to cope. I see it in other older widows and some day others will see it in me. This week I went to do a hospital visit with our assistant minister, she is acting as locum while our rectory family are taking a break. The person we went to see had had a heart attack and was in Intensive Care so we needed a reason to be there. She introduced herself as the local minister for our area and me as her "pastoral care worker" and we were allowed to go in even though it was family only. It is a long time since I've been called a pastoral care worker as it was one of the things I gave up when Ray had the strokes so I know I can fit back into that role if I wish to. I might need to do some more training but I guess that would have to be factored in. It is another "love job" as a volunteer with no pay but if it is what I want to do that is not a consideration. I want to find a new normal, a life that seems more mine and yes still think it needs to be productive too. I am gradually making changes and would like to include some fun events too. At the moment I am ready to try a few new things and if they are not for me I hope I can recognise that and move on. A quote from Jean Riva's blog on another site says: "You don't have to do it right the first time." so that give me permission to experiment a bit and find new areas of interest to be explored. I guess that fits in with rebuilding my life using a new pattern. I know I can't go back to who I used to be, my body will not push those bounderies any more but I still think happiness is possible in my more mature years. I had a visit from Trevor and Alice yesterday. Trevor, Edie and family move at the end of next week and I am going to miss them so. Trevor was so good to me when I was looking after Ray and before that when I was looking after Dad and Mum. He could always get my Dad to have a shower on Saturdays. He called it "boys in the bathroom time". Just someone helping out by doing something like that helps a lot and I was glad to have a son who really cared about the practical care. A lot of people wished us well but did nothing practical to help us. Just had a message on Facebook to say a friend died this morning, his wife was on here as Bazane...Barry had a long fight with cancer as well as stroke defects and Anne had been his caregiver for a long time. She is one of the few Aussies I stay in touch with that I met on this site. Now that part of their journey together is over and like me she has to go on alone. I am glad I have been able to keep in touch with a lot of people who were on here in the past and so keep up with what is happening in their lives now. Being on the other side of the world from my many American friends means distance keeps us apart but we can still cherish the friendships by other means of communications. You know I have so many of you in my thoughts and prayers. I have just packed the Christmas tree and the decorations away for another year. I put the tree up and the family took that as a sign that I was okay now. I didn't disillusion them. To tell you the truth I didn't really want to celebrate Christmas at all, it just seemed like too much of an effort but it is a family bonding time and also as we all say, I did it for the sake of the grandkids. I hope by this time next year I have decided some positive steps to take to make life okay again. This is my preaching day so two services down and another to do at six o'clock tonight. We are in what are called "low Sundays" the time of minimum congregation. That is okay, I don't want big crowds, just a handful of people to talk to is fine. It seems to have gone well today. I don't rival Billy Graham or whoever the top preacher is today, I guess my sermons are much like these blogs, full of common sense learned from the struggle that life has been . We all like to use our experiences to help others so I do that is a way too. It is good that we here are all overcomers. I have learned so much from Ray's stroke experiences and my experiences as a caregiver and I am grateful for those life lessons and for all of you who have helped me on the journey..

Kelli, this is tragic but it is common here too that people who can't cope emotionally with their partner having a stroke in the end finish the marriage and move on. It is not how it should be, it is not what we want but it is how it is. Wish I could be there to give you a big (((HUG))) in person.

I was like that in late August when I got a heavy cold. Nasty!

A new Bike is enough, pedaling is good exercise...lol. Might need snow chains for winter though. Congratulations to your son Asha, for working hard and doing well. And wishing you all a happy, healthy New Year.

Two spare bedrooms folks, so first in best bedroom...lol.

I just listened to "Auld Lang Syne" on Julie's blog. It is lovely to look at but it suddenly struck me that It is so UNLIKE our New Year. We are in the middle of summer. Our country is full of heat haze and humidity at this time of the year. We are lucky if we have a cool breeze rippling the ocean when we brave the hot sand to go down to the beach. And some nights the heat hangs heavy on us like a blanket and there is not even a whisper of a breeze. When we lived inland,we experienced more extremes but it was a dry heat, with far too many sunfilled summer days. We had to drive more than an hour to the next small town and when driving watched as heat mirages playing over a red sandscape, at noon the leaves of the eucalypts hung limp in the hot dry air by the dried up creekbeds and as you drove through the bush and at night we watched the television news to see brumbies (wild horses) rushing ahead of flames in the bushfires in the Snowy Mountains. Our New Year is not about snow and ice here it is about blue water and blue skies or dust clouds and cattle wandering towards the waterhole where the kangaroos have already assembled for their last drink of the day. I have lived on the coast, inland in the semi-arid country and in the temperate zone near our National Capital. I have had Christmas and New Year in different environments. I just wish I had taken enough pictures to compile a southern hemisphere New year for you to see. I am thinking of this now as the time approaches for Trevor and family to move to Broken Hill, out in the red sand country. Broken Hill made it's name with the mining of iron ore. That industry has died down now so the city is shrinking as miners leave to go to other places. The city thrives on tourists who come to see the Menindee Lakes and stop at Pro Hart's famous studio. Pro has died but art is still important and a band of artists called the "Brushmen of the Bush" produce great landscapes for city folk to buy. Edie's Mum is a painter and hopes to be able to capture some of that untamed red landscape and learn more about the people and history of the Inland. She will be the babysitter for Alice and watch Lucas when he comes home from school. A lot of Australians do not venture west of the Great Dividing Range. They are happy to live in the coastal cities and spend holidays visiting a different part of the coast. Our Grey Nomads, the retirees and early retirees, in their caravans and campervans do venture west and enjoy the "bush" but in the cooler months of the year, not this time of the year when the heat is extreme, only those who live and work there become acclimatised and thrive in the hot, dry inland. I wonder why we treat the world as if it has just one hemisphere when it has two? Maybe the contrast of summer and winter is too hard to imagine and we just see what is true for us? I like it when I get Power Point Presentations with all the continents of the earth represented, Canada and the Americas, Europe, Asian, the Scandinavian countries and those we once lumped under the label "Russia" and the Pacific Islands including Australia and New Zealand. Seeing them we do remember it is one world. And if we remember it is one world and what we do to the land, the sky and the sea transcends our borders and affects others maybe we will be more careful in what we do. I want the world to be beautiful for my grandchildren and great grandchildren to enjoy. As I age I change my views on life. Once I was very nationalistic as we all are when we are young, now I think I see a wider view of life, and when I see the world as it is seen from space I realise there are no borders, no walls or fences that separate us from our neighbours except those we have put up ourselves. Fences and borders keep other people out but they also keep us in, prisoners in our assigned places. When I came to this house 45 years ago we had simple wire strung fences. Sure we knew where our boundaries were but we didn't build solid six foot fences to shut our neighbours out, we needed our neighbours. We all worked together to form our neighbourhood and our community. We actually knew our neighbours by name back in those days and talked to them over the fence, at the local store, when passing in the street and at local functions. Now we seem to move from our air conditioned houses into our air conditioned cars and the most we do is waved from behind those tinted windows. As a widow I often don't speak face-to-face to another human being in a day. I do speak to the dog next door who seems to find her way out of her new fenced in yard over to my place on a regular basis. I speak to the cat from the house on the top side who often sleeps on a chair on my back verandah. I do speak to neighbours when I see them, wave to them as they back out of the driveway to go and pick kids us or go shopping. But it is not the neighbourhood I grew up in, the houses are bigger, the fences are higher and we are more isolated from one another. There is of course the phone and the internet so I don't feel lonely but sometimes I do feel isolated. It is not the world I grew up in. And so I have to consciously make the effort to reconnect to life. Life is not going to come to me. My old friends have not suddenly reappeared, the invitations to go, see, do have not increased. It is a Do-It-Yourself job when you are a widow to reconnect to the world around you. Being a caregiver is isolating and when that role is over I guess people just don't rush to help you change that. i find I am slowly reconnecting. I do get some invitations and take advantage of the opportunity to catch up with old friends. But there has to be more to life than that. I know there is a saying "It's a small world" but sometimes to me it looks big and scary out there.

Great news Sally and thank you for being her friend and messenger and keeping us updated with her progress. Sue.

Yes indeed, here is to more years of good health.

Smile and ignore them was my policy when pushing Ray through crowds in shopping centres. It is a sad world when we see young people so undereducated about strokes and other illnesses and so lacking in compassion. I hope karma catches up with them one day, which I am sure it will. Love the words: "gloves, shoes Potatoes" seeing your love with a big smile and a twinkle in his eye can make such a difference to your day.

There is a lot to be thankful for if your man will just try something new from time to time. Ray figured quite a bit out without help and every new thing was one more thing I didn't have to do. Way to go Bob.

It's to early to really know what life will be like in 2014. I haven't decided what my resolutions are, the choice is between "accepting challenge" and "accepting change". I know I will have to do both. The world for last year FUN became a reality toward the end of the year when at last I started to accept invitations without thought. It had taken me that long to realise I didn't have the ties, the need to get home, the need to be in a routine. I no longer had to worry about Ray and Mum. I guess that is part of my recovery. In two weeks time my younger son who was such a help to me during Ray's years of illness and his family will move to Broken Hill. That is where accepting change comes in for me. I feel probably as my Mum and Dad did when they saw my family go off to Yass, a five hour drive away and then my sister's family go off to Tasmania, a plane trip away. It is hard for parents to let their children go. For our family Christmas 2013 may have been the last time we will all be together for a while. It is sad but it is a part of life that children will grow and move away. How far away is a different matter. This is a 15 hour train journey. It is too expensive to fly as the price is geared to the mining industry not the tourist industry, so high fares. I spent New Years Eve alone. That was not so different as in previous years when Ray had been here he was in bed by 8.30pm so I had the rest of the evening alone. There was a very noisy band one street down and I could hear the words of the songs even in the bathroom so I didn't feel alone, I felt as if I was in an auditorium! The music went on till 2am! Then some of the guys talked loudly in their backyard so sleeping was not an option. It did remind me that young people like noise and old people like peace and quiet...lol. Yesterday I did chat with our regulars plus Sandy (SandyCaregiver) who was able to come in for a while. I then went off to visit old friends for lunch. It was a a pleasant afternoon, we swam in their pool, had a light dinner and came home. I had a long chat to MaryJo on Facebook late in the evening (morning her time), we are both widows now, both looking for what will happen next in our lives. Our conclusion is that you just go on with what has to be done and if changes come you just try to cope with them in the same way as you always have, one thing at a time. Accepting challenges. There are events ahead of me, moving is possible one of them. I know I will not be able to improve this house, could never afford to re-roof or put in all new windows, painting both the interior and exterior will be needed soon, re-carpetting and other large expenses. The decision will be: to move or not to move. Ray and I purchased this house in 1969. We lived in it all but 10 1/2 years of our married life. It is our unique family home. It is also over 60 years old in parts and the wild coastal weather has nor been kind to it so it is somewhat weather beaten. If I sell it the new owner will either renovate extensively or knock down and rebuild a McMansion like the one recently built next door. I am too old to want to make either of those choices. Another challenge that is more personal is how to fill my time. I like to do something that I consider worthwhile. I know that if I put out an availability sign I could find myself working for any number of charities. Charities are always after wiling workers. There are so many people of my age living the life of Riley, jaunting off overseas, going around Australia in a caravan, fishing, bowling, playing golf that the community-minded, settled people in my age group are few and much in demand as charity workers. The problem is I don't really want to be too tied down so any charity I join will have to be pretty flexible. So that is a challenge both in matching my abilities to what needs to be done and finding a charity where I can work the hours I have available. The next challenge is maintaining my health, physical and mental. One friend told me you have to put all the energy you put into taking care of Ray into taking care of you now. What she didn't understand was that taking care of Ray was crisis driven. We seemed to lurch from one emergency to another in the last five years of his life and that meant thinking on my feet all the time. I need to look at maintenance not crisis care for myself. And I don't know a lot about that. That is where I wish I had someone to confide in. Instead I have a lot of more distant friends who I can interact with but not on that intimate basis. Okay, another thing to get used to. Challenge number three is in maintaining relationships. The people I once thought of as good friends left long ago but recently I have had a couple of tentative reconnections, people I was friends with from before Ray got really ill who wonder if I would like to do ...whatever it is they do. In some cases the answer is yes but you know I don't feel as if I can trust them. It is a strange feeling, they are as they have always been but I am no longer the person they used to know. Caregiving and all the challenges it presents does change you, it both softens you and hardens you. In my case it made me more compassionate and more cynical. Listening to health care workers and their grasp of unreality tends to make you listen very carefully for sincerity in others. So are these old friends worth spending time with? I don't know. So that is my thoughts on the New Year. I wish you all a Happy New Year and the ability to cope with the choices and challenges ahead of you.

Nice to have you in chat tonight Sandy, hope you come back again next week. We do have a wide range of subjects in our chats don't we?

Happy New Year Sandy, just 11.45am New Years Day here, fine and sunny and I am just preparing to do Tuesday night chat! Hope your 2014 is a settled year with lots of good times ahead of you.

Lenny that is great news, something to really look forward to. You are so lucky!! The cruise sounds brilliant and a great way to see a good slice of Alaska. Yes, we would love you to post pictures after your cruise, that would be great!

Fred, I made a one word resolution last year, my word was "Fun". This year I am going to do something harder, my two word Resolution for this year coming, 2014 is "Accept Change". That has never been my strong point so I am going to have to work on it. For you, keeping on keeping on seems to be what you do best. There is not a mountain you will not make an attempt on. So I wish you some joy as you tackle the tasks ahead of you in 2014. Sue.

I agree David, all is well. We will enjoy your presence on this site for as long as you are able to be here to 76 and beyond.....