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swilkinson

Staff - Stroke Support
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    4,883
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    Australia

About swilkinson

  • Rank
    Blog Moderator
  • Birthday 06/04/1947

Contact Methods

  • Stroke Network Email
    Yes

Shared Information

  • Stroke Anniversary (first stroke)
    12-08-1990
  • Facebook URL
    http://
  • Interests
    Hobbies,reading and friends.
  • How did you find us?
    Google Search

Registration Information

  • First Name
    Susan
  • State
    New South Wales
  • Country
    Australia

Recent Profile Visitors

31,653 profile views
  1. swilkinson

    I was in that position from 1999, the major strokes took that away from us. It is sad that such an important part of our lives just disappeared. I loved my husband and looked after him for 13 years but our relationship changed and I was more nurse than wife. Difficult for me to think of even now, I just put that part of my life aside and went on doing the things that had to be done. Companionship rather than love became the norm in our lives. No regrets, just a few wistful moments when I see older couples walking hand in hand and wish that could have been us. Ray died seven years ago and although I have many friends a second love has never come along.
  2. swilkinson

    I was wondering why I hadn't heard from you for a while but I see now how busy you have been. When trying to get respite care for Ray I had four goals in mind. Are they able to care for hiim medically? Do the residents there seem contented?. Will I be able to get to him quickly in an emergency? Are the facilities well maintained and inviting to visitors? These were my main concerns when Ray entered care. Berkeley Vale Nursing Home ticked all those boxes. The last one was important as I wanted him to have other visitors beside me. The small group styles I wouldn't have considered. I knew he needed a large well run facility. And at twenty minutes drive from here I knew I could get there n an emergency. I hope you find the right place for Gary. And that you have confidence in the staff there too.
  3. swilkinson

    As a caregiver I had to give up minding my two little grandsons, it was too much for me and Ray was stressing. The problem for me was it was necessary to give up so much of my life in order to care for Ray that my life became like patchwork. Being a full time caregiver is a hard job with adjustments on both sides. I don't know how you do that, Ray and I muddled on for years through good times (few) and bad times (many) for love a sense of duty and knowing we had a better chance of happiness together than apart. I guess you weigh up the good and the bad and make your decision based on that. You can't change your partner but you can change how you deal with the problems. Just my two cents worth. Hope you can find your way through this.
  4. swilkinson

    ASHA, we all cross the boundary between young and old at some point. I think Ray and I became old when he had the strokes in 1999 because we could never keep up with people our own age. We have to try to remain young at heart and continue to enjoy life.
  5. swilkinson

    Hi Ana J, I looked after my husband Ray for 13years before he died. I found this site in 2005 after he had stroke number five, I was in despair and the support on here changed my life which is why I am on here as Blog Moderator still playing a part. Blogging is a great way of recording what you have going through, what you think and what you do, the progress your partner makes and your response. Do take a look at the blogs and maybe start one of your own. I hope you find the help and support you need here and go on to make friends as I have done. There are some great people on here. We make not be experts but we all have experience in stroke recovery as a stroke survivor or caregiver. Keep coming here for the company and continue sharing your journey.
  6. swilkinson

    A lot of our life seems to be about learning those lessons ASHA. Hope your ankle heals quickly. Good when your hubby and your guru agree on something. Both men of wisdom.
  7. swilkinson

    Looking forward to more fun in life

    I have started to get back to my old routine again, this has some good and some bad aspects. The good side is more socialising and going out when I want to go out. When I had the carers it was shopping once a week on Wednesday afternoons and coffee or lunch if someone volunteered to take me. I felt isolated and frustrated. Then after I saw the neurosurgery team and got permission to drive I regained my freedom, now I can go where I want when I want. The downside is that I am expected by the church folk to be wherever there is a need for pastoral care! And to do all the things I used to do. I am gradually getting stronger and maintaining my energy levels longer. This means a whole day out is still not possible but a morning or afternoon for three or four hours is. When the three months is up, when I should have recovered from the anaesthetic etc I should be back to whatever is the new normal for me. If I have been busy in the morning at the moment there is still a time mid afternoon when I need to rest, whether it is in a quiet corner with my feet up or a short nap. I try not to say "yes" to too many things on the one day now. I find I have to take signs that I need to slow down from my body seriously. If I only do 20 minutes gardening in the morning that is fine, I can do some more tomorrow or the next day. It is good to be able to do a little more each week. Today was a busy day as I went to two funerals, one in the morning, one in the afternoon about half an hour's drive apart. Both were Lions wives, I had known them both for many years. Sadly as some of our Lions are in their 80s and 90s this is going to happen more frequently. But as the Lions were some of the people who supported Ray and I through the stroke years they deserve my respect now. Also on the good side I should soon be able to travel again so I can go up to Trevor in Broken Hill for his birthday and plan some short visits to other friends. Basically this has not been feasible for the past couple of years so it will be another form of freedom gained. I have been wanting to go on holidays so much, envying all my couple friends who post pictures on their Facebook page from all over the globe. I must confess this has been so ever since I became a widow. I did those two trips to England including the trip when I met Ann Rogers at her son's wedding in Norfolk and of course I had the meet up with Sarah Rademacher in Hawaii. Those trips just whet my appetite for some more travel adventures. So what can I do? Increase the fun times in my life. Let's face it Mr Right is not coming along in my future, with or without the white charger. So anything I plan to do I need to be able to do alone. This is a bit limiting, dancing needs a partner except at the WAGS Womens Weekend in November and I have just put my name down for that. Then there is the WAGS Christmas party and I have put my name down for that too. Every year I ask my friends to give me a call if they want me to do anything with them in November or December and each year I explain why I need advanced notice. Every year some are disappointed that the Lions Club Christmas raffle and other things have taken priority over whatever they wanted me to do. BUT I still have to have the thyroid operation to face up to. I have contacted the specialist's office but have not heard back from him yet about when he plans to do the operation. I am hoping this doesn't mean I will have the operation just before Christmas, that would be a tragedy. I would prefer it after Christmas in that slow period that is most of January, when my friends are looking after the grandkids for the long summer break. I am not as involved as I used to be when the Adelaide boys are up visiting their mother and need babysitting. These days they would be minding me! They are 13 and 12 and full of energy. I love having them here but strictly one day at a time. I must say my future looks brighter now. I am still cautious about making plans, maybe that will never change. I still keep to the motto: "life is what happens when you're busy making other plans" but if I relax and go with the flow it can still be a very pleasant life.
  8. swilkinson

    ASHA that sounds so interesting. I could do with looking at the limits I put on myself. I am finding it hard to let go of the fear that has been part of my life for the last two years. I need to do the "I am enough" self talk. You are always an inspiration to me ♥.
  9. swilkinson

    I have started to go back to my old routine , I am gradually getting stronger and maintaining my energy levels longer. There is still a time mid afternoon when I need to rest so taking those signs from my body seriously. If others do not understand that is their problem not mine. It is good to be able to do a little more each week.
  10. swilkinson

    It does give you a lift be asked out. Hope the casual chat does turn into a date.
  11. swilkinson

    We are cheering you on. I watched my husband struggle back from stroke after stroke, it was hard to motivate him because he knew whatever gain he made he would lose with the next stroke, it used to break my heart. But for you it is really worth the effort and I guess you gain strength of mind at the same time. Go for it!
  12. swilkinson

    I spoke too soon. Shirley and family didn't come to lunch, Naomi was sick this morning. I do set such store by their visits though as they are rare and am very disappointed. Guess I will have to go out and dig the ditch down the side of the house as there is no-one but me to do it. Widow's luck I guess.
  13. swilkinson

    I'm a success

    The title is a little ambiguous but I have just been to my 18 month check up for my lymph node dissection and my six week check up for the brain aneurysm clipping and both were determined to have been successfull. The area of the lymphoedema has not increased and is about the same as this time last year and the neurosurgery team is pleased with my mental condition. When I consider I have had three major operations in two years that is a miracle. I have just started to drive again and it is wonderful. I am so grateful to all the people who have transported me during those six weeks but I hated ringing people up and asking them to take me places. I did get a couple of "too busy" replies and that is inevitable so I wasn't offended. I have made the same reply in the past when I wanted to say "yes" to someone but knew it couldn't be done. I have learned some new routes and on two occasions a trip to the shops resulted in having lunch out as well. Great socially when I consider I could have spent the whole six weeks alone. I missed out on a few events as they were at night during the first few weeks when I rested most afternoons and would have been too tired to attend but resumed going to Lions this week and I will try to help out with the Lions Club crew at the BBQ at Bunnings on Monday. Tomorrow I will pick up my little old lady and take her to church, she hasn't been for seven weeks so is looking forward to going. I have been picked up the past four weeks for church by a friend who is the organist and am so thankful for that. My daughter and her family are coming tomorrow for lunch. It is Ray's birthday, he would have been 77. They haven't be here as a family for a while although Shirley has as she took me to the appointments in Sydney last week. I am happy they give me the time they do I know how busy they are. In another four weeks Alice and Trevor will be here for a week. A d I will get to see my two grandsons from Adelaide too. I live for these family encounters now and feel as if I am just filling in time in between. I don't think I will ever get used to being a widow and being on my own. I often ask myself what this part of my life is all about? I had the three operations to extend my life but there are times when I wonder what the future holds. Today is wildly windy and not good for gardening which is what I had planned. Of course time is easy to fill in, I have been piecing together crocheted squares left over from other projects to make cat mats, used as part of the give aways for rescued cats going to their forever homes The mat is used in their cage and then goes with them to their new home, something familiar to help with the transition. Soon I will be back working in my usual capacity as a pastoral care person but that is a little further down the track ,I'll start as soon as I am back to feeling energetic again. That will probably be another six weeks or so on. Three months is what it takes to get over the effect of the anaesthetic and the trauma of the brain operation. At least I can drive! That gives me so much more freedom. And there is still the social meetings, coffee mornings etc to enjoy. I really don't have a lot to complain about, do I?
  14. swilkinson

    Fantastic blog, so glad you and Lesley have had an opportunity to travel and see some of small town USA. The arrangement for Lesley's Mum sound good, she has a rest from you and you and Lesley get to mark events off your bucket list, good arrangement all round. 500 peaches put away for winter! I am green with envy.
  15. That was a difficult one for Ray. He was very lucky that he had some great Occupational therapist s who tried different methods until something made sense to him. Congratulations on a new and improved you.
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