swilkinson

Debbie, this is just such positive stuff, decluttering and donating is like reclaiming your space. It is also a bonding experience and a boost in self-esteem for Bruce as you honour his decision-making. I wish Ray and I could have done some of this together but to Ray each thing we threw out or gave away was a personal loss, so that is why there is so much for me to go through. I have started cleaning up the yard after the wind storm, there is a lot of debris but I will get it out of the way a bit at a time. Then it is back to the inside spring clean again.

Sometimes it is hard not to moan. I know I no longer have Ray to look after but also I now no longer have someone to look after me. The kids have gone back to their lives and I welcome that but it leaves me without those advisors that helped me get through the caregiving part of my life so well. Disaster struck here at home yesterday when I was away having a "day out" with Pamela and her children. I had had the little ones over night because Pamela had an early medical appointment yesterday morning. In return she had promised us all lunch out at one of our favourite spots. The morning tea was packed and we went to a nice park the kids love, with lots of climbing equipment etc and had it there. Then we went on down to The Entrance and went over to a water feature which is like a shallow wading pool with small statues and waterspouts in it where the boys could enjoy waterplay for a while. Tori could just read her book in peace and listen to her music as she often does here. Pamela went off to get lunch and the boys played in the dry area. While she was gone storm clouds came over. She had just got back when suddenly torrential rains and strong winds swept down on us. The little ones screamed, it was so frightening. The crowds vanished, running back to their cars. As it eased off we did too, ran back to the car and started heading for here and our delayed fish and chips. But when we drew into the driveway my next door neighbour hurried to the car to tell us my cabin/shed up the back had lost it's roof in the bluster and it was all over his back yard. What a shock that was. Pamela, being a sensible person, said to ring Emergency Services and then the Insurance company.Thank goodness for the great men and women from Emergency Services, they came, six of them, and secured my house roof that had lost some capping and put a canvas over the damaged part of the cabin roof. Today an assesor came and looked at the damage and will "be in touch". So I see my Spring and Summer fading into getting the roof back on, cutting down some trees now listed as "dangerous" and generally tidying up so that future storms do not do any further damage. I think the new house on the western (bottom) side prevented my carport roof from shredding, being higher than my house, so something good came out of it. But the reshaping of the landscape also alters wind patterns so I don't know if this is a one-off or whether it will be repeated. That certainly gives me an uneasy feeling. I feel so dangerously alone sometimes. I know so far I have dealt with everything that comes my way but I do dread the day when something comes along that I cannot handle. It has left me with some very shakey feelings, I do feel so much more vulnerable as a widow. I am so far still seeing it as another change in life forced upon me, another uncertainty about life and my ability to handle it. Okay, rant over.

Debbie, I loved your description of the farm visit to Lyman Orchards, when I come visit can we go there? The whole day was such a success for both of you. I loved the Farm Shops I was taken to in England, we just don't have that kind of set-up locally, nothing like it that I have visited as yet. I understand about you usually taking caregiver hours into account so you can do odd jobs. Maybe get a valet service, if you have that, to take your car next time? Or figure out who would take Bruce to medical appointments if you didn't have the time? There might be a need for some kind of casual caregiver to do those times when you really need to do odd jobs.

I am glad you are out of hospital. Hopefully the medication will mean you are seizure free for a while. The low tendency to seizures is good news. Just take it easy for six weeks or so while you build up your strength and confidence. (((hugs))) from Sue,

I went down to my daughter Shirley's house for a week. No way did I want to be alone on the anniversary of Ray's death or the anniversary one year out from the day of his funeral. I knew I would just sit around and obsess, crying and making myself sick. I knew that if I stayed with my daughter and her family I would not be able to do that, I would want to put on a brave face for the grandchildren and that is what happened. I was Braveheart in a dress. When everyone says that the first year is the worst that is true of stroke recovery and of widowhood. The first year is when this time last year you were doing something entirely different and even if that were not the best thing to do you somehow long to be back there, doing it. I know it is unrealistic but it is human nature to want back to regain the thing you have lost. I just miss Ray so much and I know that is not going to change any day soon. And so you go on day by day somehow living but without a lot of hope in your heart, wishing the beloved one could return, not in the condition in which he/she left but miraculously restored to full health. Or at least to the level where you last felt you were coping with life. If only that were possible...sigh. But now I am living in the 13th month, the weeks stretching ahead of me without much form as yet but I am hoping that will change. I really hate being on my own. I can keep busy all day but the nights close in on me. I know in my case that is just one of the battles I fight, the old resistance to any kind of change in my life. And believe me once your partner dies it is all about change. You have to get used to changes you never wanted to make, partnerless can seem rudderless, hopeless, without love and companionship of what worth is life? Add the grief of parting from a long-time partner of 44 years and you can see the impact from the moon. Ouch!! I feel my return home to an empty house every time I leave for more than a day. It was really bad when I returned from England as I had had company for six weeks and suddenly I was on my own again. I know a lot of people envy the fact that my adult children are still around and invite me to join in with their activities, particularly Edie and Trevor and family but that in a way sets up the contrast, the time with them, the time alone. I am grateful they include me but I am sad that I still have so much time alone. Today I had a busy day, church for the morning service and then I accompanied the Deacon to the Nursing Home Ray was in. There were still some familiar faces but a lot of course have gone after twelve months. Those who recognised me were glad to see me and I to see them, including some of the staff. I guess they like to feel that it is “okay” for me to come back to see them again. Kathy does a good service and I liked her going to sit by some who were staying back to see her for some one-on-one time. We all need some kindness and Kathy is kind and also generous with her time. There are still three couples left I know from the time Ray was At the Nursing Home. There has been another change – they are no longer the courtyard mob as they have now been forced to leave the building to smoke so sit out the back under a temporary pergola instead. Still it was nice to sit with them for a while and catch up on their news and know that those months we were able to support each other meant something special to us all. Then I went to a lunch with three other women I met at the Dementia group, starting five or six years ago. We meet about every two months now and catch up on where we are. Two of us still have Mums in a nursing home, two of us have lost ours in the last year or so and are now in recovery. The two with Mums still alive need the help of the rest of us to keep going. Like we do here we are journeying together. And then on to the shops to fill my empty refrigerator and my cupboards with the staples of life. I have a new pet hate, as a single lady I don't buy in bulk any more and just hate those buy one get one free offers. No I do not need two huge cabbages even if one cabbage is priced at almost the price of two! And all the other things on offer today were not on my shopping list. It is a couples world in that sense too, cheaper to buy for two than for one. Oh my, what a cranky pants I am tonight! And so here I sit, trying to express that sad and yet resigned feeling I now have, about being a widow, about being alone, about struggling to accept life as it is now. I hope in some way this helps those who will make the same journey some day.

Good luck with this school year Asha. It is exciting when they grow up but sad too as you see the independence growing and realise your task is nearly done. But for you and kido that is two years away yet and I know you will enjoy each day as it comes. Just go with the flow ( as a wise woman used to tell me...lol.)

Take it easy David, build up your strength. It must be hard striving to get back to that pre-stroke normal but it is not worth causing yourself sleepless nights and uncomfortable days. Just a little increase here and there and not all at once I guess.

One day at a time is right Nancy, I was the same with Ray, appreciate the good days, get through the bad days somehow. The move sounds good. I am glad you will have the kind of place you want, the community support you need (hopefully) and I hope that Dan that settles down well. I know about the unease around little kids, I could not mind our two little grandsons for more than a couple of hours when they were toddlers ans Ray's patience ran out really quickly and he would start to be cranky with them and sometimes with me as well. One of the things I don't miss.

Oh Judy, I hope the doctors are wrong and this turns out to be something simple for Oliver's sake and for yours. It seems our loved ones go through so much, and we with them. I hope Monday's results are good and both of you do get the reassurance you need. Remember we are always here to act as a cheer squad. (((hugs))) from Sue.

The summer weather has vanished again, the temperature dropped and we had a tiny amount of rain. I hope it will be enough to bring out the Spring growth. It is nice to have a Spring rather than going straight from winter to summer. I got some photos from Pamela of Oliver in his Lion outfit, he certainly was cute.

I agree with Asha, you are an inspiration to many here. And we, the ones who have known you since you first came on here are extra proud. I know you have your times of doubt but you have your times of triumph too and that is what balance is all about. You will find your way through, I have no doubt of that at all. Sue.

Julie, there is only so much you can do. With Ray's many problems I just used to nag on and off, I bet he was glad off the off days, it was so peaceful...lol. You and Larry have been through a lot, someties it must just break your heart. (((hugs))) from Sue.

It seems like summer already. We had the hottest September day for however long, the radio commentators varied on that. The bush fire season has started and today men and women battled to save properties in the foothills of the Blue Mountains. It is a long time since we have had significant rain, ten weeks I think, and the long grass is tinder dry so with strong winds blowing from the west the fires, once lit, are hard to stop. They may have been deliberately lit or been back burning fires that somehow got away from the people engaged in tending them. A future inquest will give us that answer. It has been a busy week. The first warm week in September tends to be like that. It is as if people wake up, look outside and say: "Okay world, here I come." A good example is I have a friend down the road who I may not have seen for ages and she rings up and invites me down for afternoon tea. It is a Spring thing. We all feel comfortable being outside, sitting in the sun, enjoying the garden. We suddenly discover it is pleasanter to be outside than to be inside. I guess it happens at some point the world over. A week to go till the end of my first year alone. I can do it I tell myself every morning when I get up and it is true. Just as I did the hard yards when I was a caregiver, I can do it now. I can get up and make something of the day. It doesn't matter what the day holds if at the end of the day I can say my thank yous for what has happened, for the encounters or lack of them, for the work I find to do, for the songs I hear, the stories I read, the actions I take. Whether the day is spent in the garden, at the computer or off on one of the helping hand jobs I do, every day is an important day. It is hard to describe the week that has just gone. I thought it was going to be a hard week and it was but it was made much easier by the actions of three people, Trevor, Edie-Lee and Pamela. All found a way to participate in the week and make it seem much easier. I love my two daughters-in-law and their little families and thank G-d for them ever day. It is particularly true of the grandchildren as they bring so much joy to my life. I know my daughter and her family also think of me, but I am peripheral to their lives and in some ways out of sight is out of mind. Maybe next move they will be nearer, I hope so as I miss them. The week seemed fuller than usual. A friend rang me on Monday and I met her for lunch. Tuesday night was Lions dinner, Wednesday and Thursday I was busy. The Caregiver chat group girls all remembered how sensitive I was feeling and said some comforting things to me. It is good to be acknowlegeded for what is happening in your life. Wednesday night I went out to dinner with Pamela and her three children. It was nothing special but it is the company that counts. Thursday night I went to the Central Coast Choral festival and watched 300 young people singing and enjoyed it. Tori, my granddaughter, was in the main choir and also a singing group from her school which performed the chimney sweeps dance from Mary Poppins. I had an extra job at church on Friday, serving at a Women's Spring Rally, a local group that includes nine other parish groups so about seventy women. Nice to hear the massed voices singing old familiar hymns. We had as guest speaker, a woman who was blind who came with her beautiful golden labrador Guide Dog. She told us how having a guide dog liberates her to feel normal and part of the world around her, she has had four dogs since she went blind aged 15. Amazing that she was bright, animated, articulate, intelligent and made her audience laugh.She gave us more than information, she gave us a glimpse of a difficult world lived with great courage and enjoyment. Saturday was election day and our Spring Fair at church. We need to raise some money to complete the furnishings in our new Hall. Nothing comes easy and I do think if we have to wait a while and work hard to achieve something we do appreciate it more. A worry is that two of the ladies I have become very fond of in our Craft group are in hospital again this week, one not expected to come out (cancer) the other in a serious condition, barely 70. So unfair sometimes that we do not die in date order. Trevor and Edie made sure I was not alone on the 8th which would have been Ray's birthday. They are the most sensitive to what is happening to me I think. On Sunday Trevor and DIL Edie took me out for the day. They were to pick me up at 11am but Trev decided to pick me up earlier around 9am and we should pick Edie up from work (she does 4 5hour shifts at present). Lucas was away but smiley Alice entertained me on the journey. So they took me up the Valley to a small rural Fair. It was another lovely Spring day, and fortunately not too hot as we were to be out in the open most of the time. The main road to the Fair had groups of straw scarecrows along it, part of a competition, about 30 entries in all, which made the drive interesting. We particularly liked the group entitled: "Scarecrows of the Carribean". It was fun walking around the sports fields tasting the wares, watching the wood chopping, the handing out of prizes to those who on foot or bicycle had completed the Hill Climb, watching the two little local school teams playing soccer. I think it is the simple things that cause that peaceful feeling. We had lunch out before they went home to put Alice down for a nap and I went to help out at Messy Church.I finished the day attending church (which Ray and I both used to do). All in all not as bad a day as I had anticipated. It is another fairly busy week this week. I was at Grandparents Day at Oliver and Alex's school this morning. The school is built on the side of a hill and I used to have great difficulty when I used to wheel Ray around it in his wheelchair on previous Grandparents Days. I have just noticed that I can actually talk about him now, moslty without tearing up. I carry him with me in my heart. Today I was a little sad because he didn't get to see Oliver as a sleepy Lion or Alex as a Magician in the Infants Concert. I know there will be so many things he will miss out on in the years to come. But I will carry those precious memories in my heart for the two of us.

We had a Bishop who was from Sri Lanka and he always said: "Forgive others, forgive yourself". Asha, in your husband you have a fine man indeed. Thank you for passing his wisdom on to us.

Thank you for posting this Lenny. I am sure a lot of people think it, they just do not post. Steve has done so much to help the stroke recovery of so many people. I wish you got a medal for that. He certainly deserves it. Sue.

Yes, that is the aim I think, to figure out how to make things work after stroke. Seems like you are up for the challenge David.

David, I think you are just leaving your blog in draft form instead of publishing it. If you go to your blog list ( listed right up the top next to StrokeNet Message Board > Community Blog> you will see follys' blog, click on that. On the list you will see some of them are in pink, those are the drafts, you then have to "publish" them. Click on "Options" then publish blog entry. You have two unpublished ones that I can see. If this confuses you send me a PM and I will publish them for you. Sue.

Sunday is 1st September, it is Father's Day here in Australia, the first since Ray died. The following Sunday 8th September would have been his 71st birthday, this makes for a hard week for us as a family and one that will surely stir up emotions. I don't plan to do anything on Sunday 1st but Trev and Edie are taking me for a picnic on Sunday 8th. This is their way of making sure I am not alone. I am often alone. Sometimes it feels as if there isn't a place for me in other people's lives. The long period of me devoting my time to Ray because of his invalidity took a lot of our friends away and now me being a widow seems to have taken more. I definitely need new hobbies, something with people involvement as I really think I need to step outside my present circle and make some friends my own age. As we went through Ray's journey with stroke we lost the friends who were our own age as they were still working. Now of course they are travelling overseas or going round Australia in their campervans and caravans. I can't do much about the travelling in a campervan, I know some people do travel as a single but very few women my age would feel it was safe. Now even the friends I made on the stroke journey are fading. Hard to think that what we had in common, what bound us together, is now gone and somehow I need to acknowledge that and be able to pick myself up and carry on alone. When spring and summer are here I will have to find some outdoor activities to participate in. I need to prove I can go for a walk by myself, go to the beach by myself, no good sitting here waiting until someone invites me to go, is there? The safer places are probably ocean pools where I can stay if there are families close by and public walking tracks like the one I used to take Ray to beside the Lake. One thing I have done lately which would amuse my friends if I told them is go to youtube and sing some karaoke. John Denver tunes last night as someone on my Facebook page had a link to John Denver. I used to sing, used to dance, used to be the ringleader in a lot of fun stuff. But I am talking before Ray's strokes started which let's face it is 22 years ago and I was in my early 40's. I am not that same gal now and need to find things to do that are age appropriate. I guess what I am talking about is how to bring that joy of living back into my life, the kind of thing that makes your heart sing. Yes, I love being with my grandchildren and enjoying family time wth my adult children but a lot of that is out of my control, I have to wait to be invited rather than be able to just impose myself upon them. I'd love to be able to do it on impulse but the way things are at present that is not a possibility. It sometimes feels as if there isn't a place for me in other people's lives. The long period of me devoting my time to Ray caused a change in relationships both in our family and beyond into the wider community. My grandchildren only knew Ray as an invalid. He had the first stroke in 1990 and went back to work for 8 1/2 years. Then in 1999 he had two more in rapid succession and they retired us both, me to look after him. It was while he was in Bendigo Hospital that our daughter told him she was pregnant with our first grandchild when she visited him there. I think her son Christopher and our oldest grandddaughter Tori are the only ones of the grandchildren who remember Ray upright and walking with a stick unaided. When they were little and I minded them one day a week he could still throw a ball, was still able to read to them, still able to laugh and joke and tickle them, still able to have long conversations. As you know he had six more strokes 1999 - 2011, each left him with more deficits, physical and mental, and eventually dementia as well so the little ones remember that "Pa Ray" as old before his time, an old man in a wheelchair or hospital bed, which is very sad. For me, it is only in the last few weeks that some happier memories of our time together are finally emerging. I do sometimes remember a joke we laughed at or an experience we enjoyed together. With the one year anniversary of his death only three weeks away I am glad this is finally happening.

Debbie, do you not have a next door neighbour called "Sue" to come over and feed your Kira? I seem to be constantly on cat duty for Brett. Seriously that may be a need in the future, someone to feed Kira so you and Bruce can go away for a few days rather than one night only.

Wow - such bad advice. Not knowing of your circumstances I could kind of understand the logic but they had been there. Cannot imagine why they would say that was a solution. No thought as you say about where a stray bullet might go. All's well that ends well. Bye bye snake.

Hi Amy, welcome to our Blog Community, you have already heard from a few of our members and know that this is a real supportive support site. There is a lot of experience here and coupled with a willingness to share it means you can hear answers from many different perspectives. I am Sue, Blog Moderator, a volunteer now as Ray, my husband who I looked after for 13 years, died last year. I've stayed on here as a Chat Host and Blog Moderator as my way of saying thank you for all others have done for me. Hope to have you join us in chat one Tuesday night.

Finally a nice warmer day, a cold night but less cold than for the past couple of weeks. There is just a hint of Spring in the air. I even unbuttoned my jacket at lunch today, the first time I had been out after church with the Sunday lunch club girls since I have been back. It was good to catch up on the gossip again and they are dear souls, they have been such a support to me since Ray died. I think I am finally settled back into routine again. Going from winter to summer and back again was a bit of a shock to the system. Think about the warming food, casseroles, soups and roasts we have for winter, that is my food today. Then imagine salads, fresh fruits and summer desserts just made for a northern summer and that was what I was eating in England. No wonder even my digestion went out in sympathy. After being in company for six weeks I have hit a new wall – the silence. On Friday I spoke to no-one except the phone operator at the warranty insurance place where I rang to say my refrigerator has decided to become a freezer. Trevor said that means the thermostat has gone. The operator said I could expect a service call “some time on Wednesday”, so in the meantime I am turning it on for half an hour, off for four hours and keeping it empty. No hope for all that was frozen in there, all my lovely salad greens, even the sauces in the door froze, so out they all went. The silence is a strange thing. During the 14 years I looked after Ray there was always someone coming and going, we had Trevor live with us for four years and of course for the last three years Ray was at home there were the carers. I thought they were an intrusion at first but looking back I can see what a blessing they were. They were cheerful and efficient and kind and brought us news and provided conversation. I think of Jeff and his willingness to put Ray through his exercises and Mel who brought me a little bunch of flowers from her garden. Each carer came with their own personality and interacted with us in a different way. There were many of them and each contributed something to our lives. Then when Ray went into full-time care the staff and relatives of the other patients in the nursing home took their place in being the people who brought friendship and company into my life. The nursing home was its own little world and I went there every day and encountered smiles and hugs and yes, even laughter, the courtyard girls being the warm heart of the place for me. I still see one of them and she brings me news of the others so I still have that connection. It is strange that when the funeral is over and family and friends have dispersed how quiet life becomes. At first I would hop in the car and go to the shopping centre whenever I felt lonely, I would sip coffee and watch the passing parade and even if I didn't join in a conversation I could hear them all around me. I know my family must have got sick of my phone calls, reaching out of my loneliness into their busy lives was kind of unsatisfactory as I knew I often caught them when they were too busy in their own lives to want to concentrate on my wants and needs. I think the grief counselling helped reground me and for a while I was busy working on various tasks set for me by the counsellor. Just trying to reconnect to a world that seemed out of step with my grief-drugged brain was a strain but I did it. The trip to England to reconnect with my cousins was one of the things that came out of that period. It again refocussed my thoughts to what was, what is and what will be..in other words trying to get life back into perspective. I am not saying I am over my grief, I don't think you are ever over it but it is not as raw and all-devouring as it was at first. I probably still have brief tears most days but I do not wake up sobbing any more. And so the months have gone by. The trip to England was a welcome break but back home again I know I have to learn to live by myself and to a certain extent that is a new test for me. I don't think I am the remarrying kind. It would take someone special to fill Ray's place and I know I am a creature of habits strange and wonderful and someone else would have to be very long-suffering to fit into my life and my routines. There may be someone special out there but I think it more likely I will simply learn to live alone. And so I will learn to live with the quiet days and the solitary life. I could fill my life with busyness but I had all those crowded years while being caregiver to Ray and I do not wish to over-fill my life as I used to. I am older now and do realise that busyness can be a health hazard. So I need to fill my life with things I want to do rather than things that might cause me anxiety or frustration. And that is a plan that hopefully will slowly unfold for me.

I agree with Sandy, it is about living the life you can live now. But that for me is hindsight. I did try and fit is all in, therapy, exercises, stimulating experiences, encouraging visitors and creating family days. Then there were days out, days designed to make the most of summer etc. I worried about what was the right way to encourage him to participate, just as you both do, and sometimes I overtired and stressed Ray so much that we then had to skip a few days of activity until he recovered and got back to being willing to excercise again. So I finished up building an occassional "down day" into his schedule. After all working folk have those two day breaks called "weekends", so we should too. We are also programmed by the first therapists we dealt with, so if they said: "Ray must exercise every day" we did that, if they said:"exercises but with breaks" we did that. Some recommended stimulation, in the form of excursions or just getting out and about, some in the form of reading or being read to (which is why I always read to Ray in the nursing home). Our experiences have all been different depending on both the person we were dealing with and the advice we had been given. It is all so variable isnt it? So all we can do is give it our best shot.

If you remember to save the draft every paragraph at least you do not lose it all. There is also Autosave which works every (?) minutes so if you return to the page it may have autosaved and you can re-activate it from there. If you click on the autosave message it will tell you that the content is saved if you have to reload the page, click on that and you should get your message back. I am not a technical person but at least by saving the blog in draft it will always be there, up to the point at which you have saved it anyway. Good luck with your next blog.