swilkinson

Julie, you and Larry have come a long way and I am glad we have been here to share the journey with you. Good things have happened and better things will happen this year and onwards. Keep smiling and find something to laugh at every day. Someone once said to me : "Ray may not be laughing on the outside but he is on the inside." If you see the look on his face soften you know it is the same for Larry. Sue.

Wow, two lots of good news, the healthy little inch-long grandchild-to-be, and a trip to Florida with your sisters. (((hugs))) from Sue.

Congratulations Asha on becoming the person you have become. Enjoy the celebrations of Valentine's Day with your husband and kiddo (he is a young man now) and find something good in life as you always do. Thanks Asha for all you have done to encourage me and so many others on their journey too. Sue.

I spent some time yesterday looking through documents and old photos looking for my marriage certificate that seems to have gone missing. I shed a few tears as I saw pictures from different parts of our lives. I don't wish Ray back, not with that last year of his life being so hard, but I do wish him with me in a good way, with all his kind ways and family values. It is hard to say: "It is just me from now on". I know that is a fact, however much my family might say: "We love you Mum" most of their time is taken up with their own lives and the things they have to do and thinking about me results in a once a week phone call to see I am okay. That is hardly keeping an eye on me and making sure things are okay as they promised. A hundred different things can go wrong in a week. But they do have a right to have their own life, just as I have had mine. I was feeling so "why me?" by the end of the day. I sat at the computer and cried as I read about so much heart-ache on a widowed site and thought of all I have lost. But that is not the point is it? Because if we mourn for the past all the time we miss the present and fail to build for the future. We can all mourn what we have lost and as survivors and caregivers that occupies the majority of our time for a while at the beginning and then in a lot of places along the way. But we are missing something that is never coming back, just as I was sitting here last night. Those good times are never coming back!!!! In a section of the Bible in the book Ecclesiastes the writes says (in my version) "Do not ask: "Why were the old days better than these?" For it is not wise to ask such questions." I do take that to heart. It is not wise for me to cling to the past, highlighting the good times and longing to be back there again. I have to go on from where I am and rebuild my life. I don't want to, but I have to. Because people mostly leave this site after they are bereaved and no longer a caregiver there is not a lot of "how to" information on here. That is why I am also on a widowed site as well. I don't want to leave here yet as my good friends of many years (since May 2005) are here and I hate to stop reading daily of their doings and being here for them but I do know that as I move forward I will leave a lot of how I felt as a caregiver behind me. So commenting on what others write will require a lot of self-examinating and after a while I might find that uncomfortable. I have been greatly helped by the wisdom of a lot of people on here that draws on that "wisdom born of pain", I have watched on as people went from acute pain, through trials and tribulations to a feeling of acceptance, of being able to do what has to be done, both caregivers and survivors as I have read the blogs week by week. One advantage of being the Blog Moderator is that you read the blogs deeply, think of something appropriate to the situation and the writer to reply and watch as others add their comments. It is a week's work on a daily basis every week to do that and an hour or more to do the report. I followed Asha as the Blog Moderator and was always impressed by the job she did in summarising what people have written. It is true you cannot tell what a blog is about by it's title or by the few lines you see as a "teaser" you have to read the blog, think about it and read it again. In some cases you have to go back and read a few blogs before this one to see what has been happening in the writer's life that has brought them to this point. It its important to know what they are writing about and why. My present blogs are on a widow theme but they might also answer questions another writer has raised Nancy (nancyl) is using her ipad so she writes blogs instead of adding comments as her ipad will not allow her to do that but her blog also contains a lot of personal comment too. Fred (fking) writes about the state of the nation, issues he is passionate about and also includes personal stuff. Like a book you can't tell a blog by the first paragraph. If you need to follow a certain blog you can get a message sent to your email address when that blog is updated. I know a couple of my friends have made that happen so they get a message when I have published a new blog. That is good to do even when you think you have retired from commenting on the blogs , to still do some reading. It keeps you in touch. People always ask why people leave this site. Some people come for a while, find their needs fulfilled and their questions answered and go again. It is the way it is. Some stay for a while, join the chat group, pass on some of the wisdom they have learned and help others come to an acceptance of their situation. That is good. We all need those people who we can turn to in a crisis knowing they are rock soliid and will do their best to help. Some become part of the support framework here, officially as staff members or unofficially as regular commenters. Those who have appreciated the help they have been given are happier to pass on that help to others. As a long time blogger I often look back, usually on what was happening at the same time of the year in the years gone by. Sometimes I have forgetten certain incidents in Ray's and my life and am surprised at what I read, sometimes it brings back an old hurt and I ask once again: "Why me?". It is good to have an online journal to have been able to use it in the way I have, to sort things out. It makes life more real, more a progress of events and takes the sting out of the hurts of the past. For to have peace of mind we all have to forgive. So memories are bittersweet, they fade with the passing of time and yet hold valuable lessons we have learned along the way. We all have a story to tell and we all need to express that in some ways. I do that through this blog. I don't know what the future holds but in some ways I am preparing for that too.

We have a lot in common.

Nancy, glad you made it home. I had one of those trips with Ray but Trevor was with us and without him I would have gone mad. Those highway BM clean-ups in filthy restrooms were just awful. We had a couple of airport incidents too. At one point I told an official that if he wanted Ray's shoes off he took them off and put them back on himself and we were waved through. There has to be some compassion. Get Erika checked out for lactocse intolerance, I've had that since the gall bladder was taken out and am also intolerant to coconut and palm oil. If I watch my diet no problems, but eating out can be a minefield. Saw Sarah's photo of you two and Gary. You are a good looking couple. (((hugs))) from Sue.

So sorry you are not well Fred, as you say stroke defects plus any other ailment can lay you low real quick. Rest and time will take it all away again.You will be better byt the end of the week. Enjoy your Sunday as I will mine. Sue.

Nancy, I always wonder if simple things, lack of sleep, loss of concentration, maybe even a sinus infection are responsible for some of the falls. Ray fell sometimes because he would not listen to me, so I would say; "Move this leg now." he would prop and fall backwards, just his usual stubborn self in action. My avice is take it easy, do it all slowly and watch where he plants his feet. I'm glad you had some time with Sarah, she is a miracle worker with Gary and all her advice is well worth listening to. Maybe you can contuinue your friendship by phone now. Lean on her when you need to, she has been there for me often by email and I am so grateful. That was a good photo of you on Facebook.

Babs, you have been through a harrowing time and I am glad it all finished well with Eddie back home with you. It is normal for the caregiver to have a mini breakdown as the patient gets better. We use up all our adrenalin on the crisis and afterwards it is like a world without caffeine, and you don't want to go there for long. You have been a good caregiver to Eddie, and despite the fact that he probably doesn't think of you that way I am sure he is grateful for the sacrifices you make on his behalf. So relax and take some deep breaths and think about a happy future together for the two of you. Maybe plan some nice trips for summer, even if they don't happen you will enjoy daydreaming about them. (((hugs))) from Sue.

Phew! All's well that ends well. Yes, yes, yes, listen to Sarah, she is an expert. I am so thankful she and I met on here, sometimes when my resolve used to waiver she was right onto me to practice tough love on Ray and I did and it always worked. I have always mainteined that as surrvivor amd caregiver share a life and each "owns" 50% of it so sometimes my 50% had the bargaining power for that day. If Ray had his way he would have ruled the roost 100% of the time. But what caregiver is going to stay under those circumstances? Sue.

I had one incident when Ray refused to budge from the car on a vacation and insisted on going home. I told him:"Honey, I love you but it is not going to happen" and eventually he came out. But I hear from what you say that Dan will not come round. I think it is time you brought out the nursing home threat I really do. Sue.

Tonight we are supposed to get gale force winds so if I am late posting a blog report it might just be that the power is off. Flooding all down the east coast. the result of an ex-tropical cyclone that is still hugging the coastline means many coastal towns in Queensland are flooded and some deaths and people missing. It is now moving slowly down the coast towards us and there should be, by midnight, gusts of up to 140 miles an hour, doesn't that sound like fun? I can't do much here, just pray the roof doesn't come off or the carport blow down. The block next door is still a problem and more of the bank on my side has eroded. The owner should have built a retaining wall well past my carport but didn't want to yet. If it goes and my carport with it I hope my insurance company is ready to fight the good fight on my behalf. I hate the thought of confrontation but it seems that is the way of the world, no thought of what might happen so no preparations for disaster. Yesterday I was back in harness at church. I did the three sermon day, 8am service, 9.30am service and 6pm service. It makes for a long day. I do it every three months though our minister would like me to get to once a month when I am up to it. I was very nervous at 8am but the sermon seemed to go okay, they laughed in the right places and looked solemn when they should have. A couple of people came up afterwards and thanked me. The 9.30am service is my home crowd so I wasn't s nervous as I knew they would think kindly of me. I wasn't prepared for my reaction at 6pm when I realised two of the couples had known Ray as a young man. I only just managed to get through that one. People at church were glad I was back doing what they expect me to do. Our young minister said he knows it will be hard to start off with but he is sure I will get back into the swing of things but to take my time and back off if I need to. I was hoping he would say that as I know some of the "firsts" are going to be difficult, all the firsts when we would have involved Ray, Mother's Day, family birthdays, Father's Day etc. I am prepared to have some emotional ups and downs. I felt better when I had finished and better still when one of my friends from times past came and said to me: "We all go through it, the clue is to balance out the bad times by looking back to the good times and thanking God for those memories." I guess he is right and that is what I need to do, try and maintain a balanced view of our life. I still feel pretty lost, I go to do something and think: "No, I do not want to do that, doing that reminds me of when..." so I am still looking at loss. I am honestly trying not to now. I shake myself and say: " that is just plain silly" but that only works part of the time. So my life is still full of "no go" areas. My family must have all been busy this weekend, my older son away with his kids, poor things they will have to battle their way home for four hours of driving through wind and rain. Trevor is still recovering from his operation and goes off the painkillers tonight as tomorrow he starts back at work, driving his truck to the western suburbs of Sydney and back doing pick-ups and drop-offs on the way. Shirley and Craig are probably getting ready with their Emergency Services Van as the Savation Army are always in the forefront if there is a disaster of any kind. They will be under instruction from Head Office when to expect the call and where they have to go. I have had too much time on my hands and have been sitting here remembering what I have lost. I need to start a happy thread: "Three good things that happened to me today" so I am reminded that life can still be good. I do have a lunch invitation for Tuesday and if the cyclone has not hit town by then I will go and enjoy myself. There is also a picnic on Thursday with another group I go to but if we have the predicted flooding rains I think that might be called off. Never mind, life will go on anyway.

As Will say: good, sound advice. Ray always planned a trip, made sure we were safe. Heavy rain coming our way an almost cyclone that turned into a HUGE rain depression is tracking down the coast. I only go out when it is essential, rather safe than sorry. Sue.

So far, for the past four months since Ray died I have felt like Jelly Woman. The strong woman I was seemed to have dissolved with all the tears I cried and it seemed as if I would never be the same again. I have cried part of every day since the 19th September. I just couldn't focus, could not find that peaceful centre that is such a part of me. I have boasted on here that I am like a bubble in a glass of champagne and nothing keeps me down, well I haven't felt like that for four months. Some of you know already what it is like to be a widower or a widow as you have already buried a spouse, some of you have been seperated or divorced so you know how lonely living alone is after you have had a companion for many years. Some of you are already living alone with your dear one in a nursing home or care facility. It is one of the things I have loved so much about Strokenet, that there is always someone on here who understands, no matter what the problem is. You are all the most beautiful people I have met, genuine and honest and always ready to lend a shoulder to cry on and a bunch of virtual handkerchiefs to dry my eyes. Last night I went to my daughter-in-law Pam's place and together we took the three children out to dinner at Hungry Jack's, a subsidiary of Burger King, which is very popular as it has a playground for the two little boys so we went there. The boys are so energetic and they can run that off climbing and sliding and having fun.The local one had the playground locked off so we went a bit further afield. We had our usual fun and they all hugged me when I left. With no-one here to hug me I surely do appreciate those hugs. Today started off with me having no plans. I was just on the computer when the phone rang, it was Trevor saying the tubes left in his nose after last Friday's operation were moving and he had rung the ENT specialist's office to report that and he needed to go to the hospital where the specialist was holding a clinic so he could see what was happening but as he had just taken oxycodine, a quick acting pain killer he couldn't drive. Edie was busy and they had a tradesman coming so could I come quickly. Funny how when your child calls, no matter how old they are, that "Mom" instict kicks in and you are changing clothes, finding keys and in that car before you know it. The good news was that after a 30 minute wait he was taken into the clinic and the specialist decided as the tubes were loose it meant the inflammation was subsiding and it was safe to take the tubes out. Trev was delighted, no tubes, a cleared nose and his specialist said it was all healing nicely. All is well that ends well. We went back to Trev's for some lunch. I hadn't seen Alice since Christmas so it was lovely to catch up with her smiliness. I think she was surprised when Granma stepped into her playpen but she was soon patting my face and pulling my hair. She has her first tooth at seven months, is making sounds that sound something like words and is bumping backwards and reaching out with those long elastic arms kids of that age have. She was also rubbing her eyes so Edie put her down for a nap. We spent the rest of the afternoon in the pool. I got dragged under a few times by Lucas who decided it was Drown Granma Day. It is tougher to stand firm now than it was when his Dad and Uncle were teens and I did two out of three throws as a challenge for who did the washing up but I was 25 years younger then. We always played boisterous games so I understand Lucas wanting to do the same and for another week Trev needs to let his nose heal so I was the dummy today. And you know what? Today I felt like a Mum and a Granma and a useful person, not just a widow. And I think that is a good thing.

What you are doing is just great, paying it forward. There is a lot of satisfaction in helping out when help is really needed. Okay, it will stress Dan out but so it did Ray when I had my grandkids in an emergency. I used to say: "I can't always give you my full attention, there are other members of the family who need my help too" and in a way he did understnad and make an effort not to be demanding. Now it is paying off for me as I still have a good relationship with my daughter-in-law and with her three children and I go to their place for dinner once a fortnight and love it. We can't do everything but if we can help out when it is really necessary the memory lingers. Sue.

I always kept a pack in the back of the car containing a shower kit ( for accidents while out) spare clothes ( just a track suit or shorts and a T) like Debbie I had two or three simple bags so just grabbed the one I needed. It is a lot of work to get out but it's better than a padded cell. Now I travel light, even got a smaller handbag...sigh. Sue.

I don't know whether you believe in global warming but I certainly did on Friday when the day was from early morning one of overpowering heat and there was no way to get cool. I just stayed still most of the afternoon and tried to survive. So many people put their air con on that we finished up with blackouts all over the area and we didn't have power here for two hours. Poor Trevor got caught up in that, he was in the operating theatre about 3pm having an operation on his nose and throat when the power went off there. Thank goodness they had generators they could use as auxillary power and the operation was concluded successfully. You may have seen that Australia has been in the grip of bush fires and has had record breaking temperatures for over a week inland. Everybody of course sympathises with our inland folk but secretly enjoys the added comforts of living near the big cities. We here on the Coast who rarely finish the day without a cooling sea breeze really suffered on Friday, sweltering in heat more than 110 degrees. That would be normal for the inland and when we lived in Narrandera we always had some days that hot in our summers and sometimes a week over 100 degrees before a cool change arrived. But here on the coast we ALWAYS have cool nights except on some occassional overly hot days as Friday was.Now we can empathise instead of sympathise! So a cooler weekend, gentle drizzle when we could really do with heavier rain but at least it has cooled our days down and made sleeping easier at night. I used to toss and turn all night when we lived inland and the days were hot and the nights not much cooler. Only exhaustion meant every few days we did sleep, otherwise our bodies would have just shut down I think. We didn't have air conditioning there either just one of those old fashioned water cooled fan driven coolers, so up every couple of hours to feed more water into it so it didn't burn out. Luckily we were so much younger then. So I shopped on Saturday instead of Friday.I have learned the significance of getting together with other widows now. I go out to lunch after Sunday service with a group of widows, not every week but whenever I can. Saturday I went to the shops and joined a couple of widows from the church for coffee and spent over an hour chatting, they apparently are there every Saturday morning around 11am so asked me to join them whenever I am able to. Today I went out after church to lunch with the widows and by the time I came home I was ready for a nanny nap. I didn't have ironing to do, the floors looked reasonable, no dishes to wash, so a sleep was permissible. I still feel as if I should be doing something every hour of the day. When I sit down for a while I jump up again thinking that I am somehow neglecting a vital task. All of this is left over from the years of caregiving, the years of working every daylight hour supervising and serving others. Now I simply can't get my head around the fact that it is OVER. So I need to learn to live life in a different way. I need to replace my old life with a new normal. Another widow I bumped into told me she was going back to water aerobics soon and asked if I would like to come and try it out so I may do that too. I met her in the days when I used to take Ray to the pool for exercises and would speak to several ladies from the group as they warmed up in the heated pool before going into the big pool to do the aerobics class. She has always stopped me and asked me about Ray, was sad when he died and has been waiting to see if I would like to join her in the class when they start back in February. So I might just do that, no good saying I want to do new things and then being shy about starting. My nephew was to have open heart surgery on Monday but that has been postponed, no explanation or new date for the operation as yet. I postponed my trip down south to visit my daughter and her family because of Trev's operation and Bill's so I hope if I make a new date to go down to Shirley's that they don't clash again. Family is important and sometimes it is hard to choose between two events and prioritise the needs of various family members. I wanted to spend some time with my grandson Christopher before he goes up to high school and I love to spend time with my grand daughter Naomi doing craft and all the other things she loves to do. Caring is what a mother does, what an aunt does, caring to me expresses what it means to be family.

Fred when I looked at what you wrote about your life before the stroke that was Ray too, like a mouse on a treadmill just going round and round trying to keep up. Too many committments, not enought tme to relax with the family, certainly not enough time to be regular at church. I wonder why we expect to be able to stretch and stretch time not knowing that when it snaps back we feel the blow? I'm glad you have made as much as you can of your life post-stroke. And having your grand daughter and that puppy gives you a reason to go on. You should indeed praise your wife, her value is above rubies. I came on here in May 2005. The best place I could have found for support and information. I feel so blessed to have known you and so many other good people through the stroke journey. Sue.

I tried to watch "Awakenings" but it was so sad, and "Regarding Henry" I got half way through and bailed. I haven't seen "Tank Girl" but there are a few movies I like for their awfulness too. Sue.

Yeah. you did it. Well done you!!! Sue.

Asha, you make sense to me. I too can think how much bettter someone else's life is and miss the point that mine is the way it should be. You cannot live in someone else's projected reality, after all their actual life may be very different. I once envied the life of a woman friend who had wonderful clothes and found out later she was a beaten wife! No wonder she wore long sleeved dresses and jackets! I think you are doing well. Fill your life with wisdom and continue to let us in on the nuggets of wisdom you have discovered for us. Sue.

When Ray had his first stroke and 3 months of rehab, six mnths off work, my children were 15,18 and 21. None of them had a licence and so I was still taxi driver to all of them as well as supervisor for the 15 year old. I know that feeling of being torn between the caregiver and mother role. But your kids need you and you are the only mother they have so you firmly tell your survivor: "I am sorry I have to do this" and whatever it is you do it and he has to understand that. The bottom line for me of course is that strokes continued, all seven of them and so we revisited this situation many times but the children were grown up and gone and the person who missed out was me as I did not see them as much having had to break down that mother/child bond in order to be a full time caregiver to Ray. I am reaping the bitterness of that now as they are used to me not being in their lives and a once a week phone call is the contact I get. So don't neglect your kids, they are important too. Sue.

I hope tame means domesticated... . Sue.

I once did "50 thing about me" - took me a week of editting before I was happy with it. I am with Fred, being a good wife and Mom and the mentor you are to us on Strokenet makes you tops in my book. Sue.

George, a very thought provoking blog. I personally have very heavy bones...lol. Yes, we are good at deceiving ourselves and by doing so we are not making the best of our lives. I hope you both achieve your goals, both in body weight and body fitness. I used to nag Ray to keep on going, to move it or lose it but all in vain. he exercised as little as he could and slowly lost anything he gained from the intense PT/OT he had twice a year. So sad. I'm glad Lesley gets to go home to NZ to her folks now and again, I know from my daughter living too far away to visit once a week how much it means to me to be with her. I am sure it is the same for Lesley's family. Nice blog....Sue.