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Staff - Stroke Support
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About swilkinson

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    Blog Moderator
  • Birthday 06/04/1947

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  • Stroke Anniversary (first stroke)
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    New South Wales
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  1. swilkinson

    The crying would be hard to bear. Ray's was more a silent resistance. Why did he have to go, why couldn't I go on my own and leave him alone ( I couldn't as he had falling issues). When your life changes so radically you have so much inner conflict. And yes it does affect your mental health. I suggest you get some practical advice from older friends dealing with similar problems on how to get a break yourself. Try a babysitter, a paid carer, some help from her family for your family. All caregivers need a break or they break down. And that breakdown destroys a family. It is not a case of being selfish but being practical. So please look around your area for help. Ray was at Daycare one day a week at 57 with men who were in their 80s and 90s, he didn't want to be there at first but I told him it was a mental health break for me which it was. I joined chat on here because the participants have a lot of wisdom both stroke survivors and caregivers on how to handle a situation where you know things are unlikely to improve, and that is what we have to face up to as a caregiver. Things have changed and they are not going to go change back. And that is a really harsh reality. I know all of this is so hard, I had a lot of similar feelings after Ray's major strokes in 1999. I was 43 when he had his first stroke in 1990, 52 when he had the two major strokes in 1999. My life changed as much as his did. Neither of us wanted that or deserved it, it just happened. I found myself bitter and resentful sometimes but somehow managed to overcome that. I hope you can too.
  2. swilkinson

    When we make someone else happy we find happiness ourselves. I looked after my husband Ray for thirteen years giving up a good job to be his full time carer. From time to time I asked the same question you have posed. In the end I decided the only way was to make looking after Ray the reason for getting up each day. It was then I found out that if he had a good day I had a good day. He died six years ago but I stayed on the site as a volunteer. I became a chat hostess on here but gave that up about three years ago but stayed on as Blog Moderator. That's my story. So, what about your story? Would it make a difference if tomorrow when you get out of bed and put your feet on the floor you say: "Today my job in life is to make my wife happy."? Try it and see how you go. I call this approach intentionality. You intentionally work towards a goal. In this case not your own happiness but the happiness of the one who you care for. I don't know your situation but I do know this worked for me. My mantra was: "Today I choose to look after Ray." That meant I stopped feeling helpless and started feeling that this was what I had chosen to do and that did make me happier. Hope it works for you.
  3. swilkinson

    Congratulations ASHA on raising a wise child. You have been such a good example of how to overcome adversity and have continued to be an example to many of taking a spiritual path throughout your journey. You have been an example not only to your son but also to many of us here. You and your husband have raised a fine son who hopefully will also make a great contribution to the community.
  4. swilkinson

    Oh Sarah there is no easy way of doing this. I still have nightmares about putting Ray into care but there was no other way when he became a three person lift.. we have to do what is best for each of us. I hope you find somewhere you are happy with.
  5. swilkinson

    Getting out a bit more.

    I walked into church today at Bateau Bay Anglican Church and five people lined up and gave me a hug. It felt good to be welcomed back after being away for three weeks. Some of the church people I saw last week when the care worker escorted me to the shopping centre, others I had spoken to on the phone. The lady who often sits beside me took a card out of her handbag and gave it to me apologising for forgetting to post it. It is something I have done myself so I just smiled and thanked her. Yesterday I was taken to the Combined Stroke Group morning tea and other friends did the same, hugged me, gave me cards, welcomed me back. I am not fully recovered yet but am starting to get out for a couple of hours without feeling overtired. The nursing staff were right when they said I would feel really tired for the first couple of weeks. I so grateful to those who have volunteered to drive me to one of my doctor's visits or one of the places I regularly go to. I am glad some of my friends have been willing to put their concern put into action in this way. And for those who have visited me and brightened my day. I'm glad I went to the Stroke morning tea as there was a very good guest speaker, a local neurologist who with a team of other health professionals is putting into place a system called "Telestroke" which will streamline practices with hospital admission departments so that people suspected of having a stroke will be given priority and access to a neurologist, a CT or MRI scan and blood thinners etc routinely to lower the risk of deficits. It seems so logical but has never really been available outside of city hospitals. It is fantastic that linked together by technology a neurologist or neurosurgeon could now supervise this process in smaller country hospitals where it had previously been impossible to access such a service. It will certainly make living in country areas and having a stroke much less of a risk than it has been in the past. I am not sure when I will be driving again but have to see the neurosurgeon the first week in September so that should be decided then. I am lost without a car here but with kind friends wanting to take me here and there I hopefully will not get cabin fever. On days when the weather is fine and sunny I sit on the verandah and read or simply watch the world go by. There are people walking dogs or pushing babes in strollers or just walking back from our little row of local shops so plenty to ponder. And I am willing to put my feet up and rest if that is what is required to get back to full health. Once I would have become restless and fought against this enforced rest but now I just appreciate that I have had a very dangerous operation and have come through it relatively unscathed. It would not have happened a decade ago, we have come a long way in the last ten years as far as technology is concerned. At 72 I am an older lady in the eyes of the medical profession and am thankful they agreed to do operation. A couple of days before I left hospital a man in surgeon's scrubs put his head around my curtains and said: "Mrs Wilkinson, you are a success!" and I am. No longer do I have a time bomb threatening to blow up in my brain, I now have as much chance of living to a ripe old age as everyone else. I have one more operation to be done, the thyroid, and then I will commence a whole new way of life. Hopefully I will be able to travel, see a bit more of Australia. Because of the lymphoedema international travel is in doubt so I may never get back to England or over to Canada but trains and buses and cruise ships may still be practical. I would still like to travel with a companion but with grandgirls growing up maybe they will be suitable companions. My family are much relieved by the success of the operation and my continuing recovery. I am glad I was able to come back to my own home and not have to be a burden on one of them. I love my kids and grandkids but having had to look after my parents and then Ray I know what a toll that takes on your life and I don't want that for them. So right now I am sitting here counting my blessings. Including the blessing of being back in here in my own home.
  6. swilkinson

    Tracy, no-one forces us to be caregivers, we do it out of love or a sense of duty. Your Stepmom and your daughter both did it out of love. I believe there is a sense in which those who give such love get it back, maybe not immediately but eventually. I have found that in the past three years as I have struggled with three serious operations I have been surrounded by people who want to pay me back, not for what I have done for them but for what they have seen me do for Ray. So keep praising your Stepmom and stand by her as you both begin your bereavement journey. (((hugs))).
  7. swilkinson

    Paul I still belong here for that reason. As the Blog Moderator I can be an encourager to survivors and caregivers so that no-one goes unsupported. As a former caregiver and with 13 years as the support for Ray I know both sides of the story.
  8. swilkinson

    Your Dad is safe in those precious arms Tracy.
  9. swilkinson

    Prayers for your Dad and for all of you as you support him through this time. (((hugs))).
  10. swilkinson

    My Mum used to try to get out of the car too. I think it was a miracle she never finished up in the roadway. We have compulsory seat belt laws here so I could hear the faintest click and knew what she was up to. I f I could I pulled over to the side of the road, put her seatbelt back on and told her she would not be riding in my car again. That was enough to do the trick for a few minutes and give me time to head back to her nursing home. Used to spoil the day for me though.
  11. swilkinson

    ASHA, life is full of frustrations and challenges and sometimes that outweighs our general contentedness. It can be harder challenges sap our energy and produces a mild case of burnout so maybe pace yourself and take some downtime as you need to. I look at this part of my life as a challenge and try to think what am I supposed to learn from this? Is there among your family and friends people who could become a small group of women you can get together with occasionally? This might be the start of the kind of support group you are looking for. I have several groups I go out to coffee with and they provide me with ideas, albeit sometimes crazy ones, to look at when I have a problem. As we age our ideas need an update and different people come into our lives whose wisdom is relevant to where we are today.
  12. swilkinson

    Back home after the operation

    I arrived back home from hospital this afternoon. The operation to clip the aneurysm has been deemed a great success. When they said a headache for two weeks I wasn't thinking of a face ache but that is what I have. The medical team have been thrilled with the success of the operation in " an older woman". I must say I am pretty pleased myself. I will endeavour to post a longer blog at a future time. I just wanted to let you all know that our prayers were answered and that apart from heavy bruising and a little pain and discomfort I am just fine. Walking , talking and commenting on the world around me.
  13. swilkinson

    Glad you are back Janelle, the encouragement you give to others is both valuable and highly valued. I know the support I have received here particularly during my caregiver years and early widowhood has changed my life. People who support others like you do are the everyday angels who brighten up our lives and make it worth the struggle.
  14. swilkinson

    Looking ahead as cheerfully as I can

    It is only a few days before I am off to Sydney to have the brain operation. I am not scared, my angel still has her finger on the problem spot. I am packing an assortment of bed wear keeping in mind I may not necessarily be able to pull anything over my head. I know it is a long recuperation but do not know the stages of healing. I have spoken to people who have had the operation but for most of them it was in their 40s not their 70s. The school holidays are here and Alice and Trevor have been down from Broken Hill for a few days. It is always a chaotic time with them but lovely to have the company of a lively seven year old. The Nintendo Wii was used a lot and she tried to beat me at every game we played. Mostly I gave in and allowed her the victory. We went to the local parks, had some nice walks and she and Trevor managed a couple of hours buildings and castles on one of the local beaches. We also had dinner one night with Pamela and the two boys. Tori was still in Adelaide having some extra tuition, with her major exams in four months time she felt she needed to do some catch up work. I will see her on Monday. I spend the weekend with Shirley and family two weeks ago. As usual she is a tower of strength to me. She will be by my side right up till the operation time and there when I come out of recovery. It was good to see the grandchildren, they are all so different but I love each for their positive qualities. Christopher is at University and seems to be doing well, the others range from Year One to Year Twelve. I try to keep up with what they are doing, what their interests are etc. I have not been travelling much so I am glad Trevor has decided to come to the Coast for his week with Alice each holiday. It is facing that long drive, 14 hours each way, that I admire him for. I know many would not make the effort. I am following my usual routine, that is making it much easier to find my way through the waitng days. It has been difficult at times not to worry that my future may not be as I had planned but I have promised myself to live as well as I can whatever happens. All those years of living with Ray's many disabilities have given me the courage to look at my own future with a better attitude. We can do so much more if anxiety is kept at bay. And hopefully the days ahead will be better than I am anticipating right now.
  15. swilkinson

    Tracy it is always good to hear from you and see into your world. Sounds like there are good and bad things about your relocation but on the whole you are happy there. Neighbors will always be a problem. The house on the west side of me was a rental for many years and some neighbors were wonderful and some I was glad to see go. Hopefully you will find some good people in your neighborhood who you will become friends with.