swilkinson

Sandy, all that you do for Bob is what you need to concentrate on so congratulations on putting the house on the market - it will clear the way for things you need to do and things you want to do. I know in an ideal world there would be time to do so much more but we are stuck with the reality of time slipping away and we need to prioritise and do what we can do as opposed to what we want to do or what well-meaning friends tell us we ought to do. Take it easy and take some time for yourself if you can. A little time to breathe, time to rebuild your own energy supply, makes a lot of difference in the long run. Sue.

Cat, all is well that ends well but that was a heck of a way of finding out if Mike could cope alone! Hope you are recovering day by day, it takes a while to get back to anything like normal but at least as the pain from the operation eases you should start to feel stronger now. Yes, it is amazing what they can do on their own. Congratulations to Mike on being self-sufficient when he has to be. Sue.

Welcome to the Blog community. It is sad you have had such a struggle at such a young age and with a small baby to look after as well but you have done it. Soon you will have one of your young ones driving and that will make a huge difference to all of you. In the meantime see how many of your former friends are still willing to help out, some will come back to you with an offer for sure if you tell them of some of the difficulties. And as you say you have the help of your husband and your mother too. I looked after my husband Ray for 13 years and he spent a year in a nursing home and sadly died last September. I didn't begrudge anything I had to do for him, it iwas what I had promised to do and whatever wasn't a pleasure I soon got over. Keep us updated on you and your household, always happy to have another person to be a part of our special group. Sue.

It seems to apply to being a widow too. I certainly did not sign up for that! Sue.

I wonder why I think if I just sit down and talk to "someone" all will be well and I will sort things out and things will be different? I had planned to talk to my daughter about the difficulties I am going through with processing my grief, the loneliness, the frustrations etc but we never seemed to have the time to just sit down and do it. A Salvation Army officer is constantly on call and as soon as she'd sit down with a cup of coffee and a free couple of hours the phone would ring and she was off on a call, or consulting some other service to give a helping hand to someone. It didn't help that there was a mini cyclone in the early hours 20 minutes drive away on the first Sunday I was there. There were 28 homes wrecked, 28 families made homeless plus two blocks of rental flats damaged as well. Her Corps was on standby for a day to help out at the evacuation centre but local people filled in the needed duties and she stayed home. She did have to do two welfare calls in the area. A young Mum with a couple of kids called for assistance and another family called who had moved into temporary accommodation in a trailer park and had no food. I admire how much she does, she works very hard to be that "angel of mercy" some people think of the Salvation Army Officers as being. I've just returned from ten days at my daughter's place, ten days of rain! So far both January and February have had above normal rainfalls and March is shaping up nicely. No need to say I took my swimsuit and it never got wet? After all this was supposed to be a summer holiday! I could have danced around the front lawn in the rain in it, if I had stayed longer I probably would have, just for the exercise. I did a couple of walks alongside the Lake in sunny periods on a couple of days so did do some walking. Long rainy days are bad enough when you are at home and can just put your feet up and relax and watch no-brainer movies and eat popcorn in your armchair but in someone else's house that is difficult - thank goodness for reading, that is how I occupied my time while the rest of the household were busy with their daily chores. I had some time with my grandchildren, talked to my son-in-law, went to various places with Shirley. I loved Mini Music with Mums and toddlers happily dancing around the Hall to various songs much loved by the under-fives and yes, I still remember how to make Incy Wincy Spider climb up the Water Spout. Without the cheerful company I enjoyed I know that so many days of rain with just my own company would have driven me mad. For the sake of Aussies who are enjoying a warmer summer than we are I will mention that my daughter took me to the Robertson Show last Saturday. It was about 23 degrees (70) when we left Shirley's to drive up over the Escarpment and when we arrived the other side the temp was 11 degrees (50). Let's say we were underdressed for that kind of weather and hussled in and out of buildings as much as we could and stayed for a couple of hours but in the end decided it was just too cold and wet. The light rain then turned to sleet as we ran back to the car, parked away out in the paddock and the car's heater remained on high until we all stopped shivering. That is what Shirley described as an adventure! I'll now settled back into routine and see where life leads me. I know of events coming up in the church and various other organisations I belong to that I will be able to join in. There will be periods of busyness and periods of solitude. I am getting more used to being alone now. I don't fret about it as much as I did six months ago. I don't know that I will ever like living as a widow but I might learn to tolerate it. Of course I got back to some bills to be paid but hey! everyone does that, don't they? Summer may linger after the rain finally goes away or it may just be that temperatiures stay at their current lower-than-normal level. I hope there are still some sunny days ahead to enjoy some walking and even maybe another opportunity to get my swimsuit wet.

Ken you have done very well. Good for you. And to have your neurologist notice was good too, maybe she can make a note of what has benefitted you and pass that on to others. Sue.

Fred, you did well. I don't envy your wife the drive home but I guess she had fun and it was worth it. It is good you can manage alone for a couple of days, it makes all the difference in the world to be able to maintain some independence. Sue.

One thing you need to know about me. I never really left home, I just transferred from one home to another, from my parents home to where Ray lived, from there to our own home. I never lived on my own. I lived with Mum and Dad and my sister, then she got married a few months before me. Then there was the excitement as I planned my wedding, a short honeymoon and then it was Ray and I building our life together. I know many others of my generation did that too, of course not all of them stayed married for 44 years.Now somehow I feel as if because of that I missed something in life. I went to the grief consellor this morning. I vowed to not cry all the way through this time and managed to hold off tears until towards the end. She is very good, just summarises what I have said, gently moving me on as much as she can. It is hard enough to be there as it is so I am glad she is not the "do this, do that" type, or the type that just sits there in silence. I do need some guidelines and some homework. Something to think about and something to act on. I think I learned a lot at today's session, she thinks I am rebuilding my life slowly, thinking about what I am doing, not rushing things, allowing myself to grieve etc. She is right, I know there is such a thing as grief work and that is the head space I am in now. I am trying to be less emotional and more intentional in what I do. But she also saw a big deficit in my life, I do not have the ability to care for myself. I have spent most of my life caring for others. I was the older sibling so it was "go take care of your sister". Then it was get a job and as a general rousabout in a large office it was taking care of all the little things, then marriage and taking care of Ray and the kids. And then, just as the last child, Trevor, was 15 and able to look out for himself, Ray had the first stroke. So I transferreed from looking after the kids to looking after Ray. Working was part of that, getting some extra training then getting a job so if Ray did have another stroke he could be home and I could work or we could both work part-time. I had it all planned out. The Chaplaincy and then Parish Assistant job was my indulgence. I dropped back to part -time, three days a week to give three days a week to the Parish for nothing. I know some people are shaking their heads here but I did enjoy the work and saw some transformations happen because of it, so I was well content. Then in 1999 along came strokes number two and three, our retirement, me looking after Ray for 13 years, his soujourn in the nursing home for twelve months and then his death in September 2012. Thump! Down to earth I came and fast. I still had Mum slowly dying in her nursing home to supervise. Mum died in November 2012. A second blow struck me down but not out. Almost brought me to a dead stop but no, I must go on, I have to plan Christmas for the children and grandchildren, must keep moving, must plan, must do. Are we noticing a pattern here? Then January came along as it does, summertime and nothing much to do. With nothing to do I was a mess and so I decided I needed outside help, some counselling from someone who could see the big picture instead of the tiny picture I could see. And now I am into February and slowly rebuilding my life. Or I would do if I knew how. But wait, I don't feel up to this, I have no "go to" person, no plans, no goals, no idea about where to start. I have that feeling of reeling out of control...help me. But: "No" say the grief conunsellor," you do have to do this by yourself. Only you can decide what is right for you. Others can give advice but it might not be right for you. You will have to make the choices, decide what it right for you." But I don't know how...so I cry..I feel so helpless. She looks at me kindly and says: "that is your homework, to find out what is right for you." Wow. Drums going bang, cymbals clanging...that feeling that I am tied to the stake and the African tribe armed with spears is starting up a war dance...yes, fear of failure looms out of the gloom. Panicking will do nothing at this stage. "Take your time": she says. No rush to find a solution but it has to come from me, out of my own heart, out of my own need. But without the self-knowledge that the confident teens of our time have. We weren't encouraged to have that sort of knowledge, we were educated enough to get by, enough to get a job, enough to raise a family but not enough to get too self-confident. In my parents day self-confidence was frowned on and they passed that onto me. Skip this paragraph if you are not religious. I was taught that true JOY came in the form: "Jesus, Others, Yourself" so we put others waaaay ahead of ourselves. I was not a princess I was a servant girl and serving others was my lot in life. I don't know if that actually was the message but it was the message as I read it. Don't put yourself forward, look after others and be content with what you have.If I heard that once I heard it 100 times, I know because my mother often told me she was telling me for the 100th time! Who was important in my family? My sister because she had been sick as a child and my parents because they were working hard to make a good life for us. Having come from England with next to nothing as migrants they had to work hard to make us a home and provide us with all we needed. And in my opinion they did a good job of that. Okay they were not perefect but they did have our best interests at heart and they did make a decent life for us. My sister sees things differently to me, she is from the next generation, the one that wanted more out of life, sometimes even more than they actually deserved. So here I am at another crossroads, learning another way of looking at things, from my point of view. I have to learn what it is I want before I can set goals and achieve it. No-one is going to do that but me. This goes directly against everything I was taught. So keep me in your prayers, I need all the help I can get.

We went through this when Ray became a diabetic in 1990. Luckily as his Mum was a diabetic and I had watched her eating patterns ( she had died by then) I was able to put together a diet for Ray fairly easily. He defeated me by eating snacks on his way home of course but at least I tried to make the meals he had at home of the right ingredients. Of course after many strokes eating out became a problem for other reasons. Here there are books available with a lot of information, one called Diabetic Monthly was really helpful, plenty of nice recipes and tips on things like eating out. As a diet restricted person myself (lactose intolerant and low fat diet) I do sympathise with diabetics and others whose entertaining and eating out is severely affected. The snow will soon be over Debbie, roll on Spring! (edging closer to winter for me...sigh). Sue.

Hey Katrina, Happy Birthday!!!! It is wonderful that you have become such a lovely young lady after that set-back twelve years ago. I know it is easy for me to say to concentrate on what you have and build on that but I will say it anyway. Accentuating the positives in life works for me when I am surrounded by negativity so I hope it can work for you too. You have come so far and done so well... Sue.

Welcome back Little Jo, always good to see lovely people like you back blogging again. So sorry you have been through so much sorrow and woe but hopefully you are on the mend now and will be fit for summer. Read all the old timers blogs and you will soon catch up again. Sue.

If you can't get decent access to services it is a job for your politicians to fix. We call that the postcode lottery here. People do have to sometimes re-allocate to be near the services they need. Like buying a house in the catchment area of a good school or making sure you are on the bus pick-up route for Daycare. I was told to sell up and move three streets over to do that! I hope you find someone who can get a handle on Dan's troubles and maybe give you some management strategies. In the meantime I wish for you to have a peaceful weekend. Sue.

Sometimes when I am down in the dumps I examine my hurt and pain and say:"no-one truly understands" which makes me shudder when I realise how many platitudes I have used on others during their time of grief. Honestly I had lost close friends and older relatives but I never realised how different it was to lose a spouse. In my role as a Chaplain or counsellor others had come to me looking for some comfort and I hope that is what they went away with. I doubt that my "expertise" was sufficient to even glimpse the depth what they were going through though. I have been a telephone counsellor, a volunteer Chaplain and though my work in the church someone people turn to in times of trouble. I have done my best to help people see the way ahead more clearly and reassure them of their worth, and in some cases help them find a new purpose. I don't think any of that is special, all you need is an ability to relate to others, to put youself in the same position. What I do think is special is making yourself available to people in their times of trouble and for that I am thankful for this site and others like it that provide us with an opportunity to have others share in our journey. Even now in my grief I am glad for the Strokenet extended family that gives me such support.. I do understand that some of the comments I leave on the forums or blogs may be unhelpful, not because I don't want to help but simply because I am not in a position to do so. I lived for many years with a stroke survivor, my dear husband Ray, but that does not mean I am able to even imagine what it is like to day after day live in a body with limited capabilities. We all look for help when we are vulnerable and in need and in some hurtful cases yes,we fail people. People have told me I'll never know what they are going through etc and I know they are right. Of course I do not know what they are going through. But I do want to reach out and comfort them in some way, as much as I know how. I can't say that having been a counsellor helps my own pain. I know all the theory but how do you apply that to your own hurt? Of course I still mourn the loss of my husband Ray in September and my Mum in November, it is hard to lose those you have loved deeply and for a lifetime, and I guess that the pain of that loss will remain for however long it takes me to work through it. I can't do anything else but go through the pain and hopefully I'll come out into the sunshine again.In the meantime it is one day at a time. I have been reading a book by Henri Nouwen on Christian Leadership and he points out how helpless we are in the face of another's trouble. We try to get along side them, to give gentle advice and to show understanding but in the end all the one in trouble needs may be a hand on the shoulder or a reassuring presence. Words are never enough.Our greatest need is a sense of belonging, all other needs pale into insignificance beside that.To join a community like the one we find here can have a restorative effect as we once more regain a sense of belonging. I guess that is why support groups are so vital and that unconditional love we feel when people really listen to us. That is why coming to a place like Strokenet for a lot of people is the beginning of healing and why I am still here. I still need that love and support that is offered by a support group like this. I may no longer be a caregiver but the strokes that affected Ray's and my life still have a hold over me. The way Ray died was a result of the strokes and so that shadow is still here, I may be an ex-caregiver but I will never forget those years and the effect they have had on my life. Next Monday I go to the second grief counselling session. I moslty cried through the first session, I hope not to do that next time. I want to remain in my head and ask some of the questions that are on my mind, like what steps I need to take to find myself moving forward. I realise that that is probably the wrong question and comes out of my feelingds that I do not like being out of control and that is why I feel so uncomfortable now. We all feel out of control after a crisis or a trauma and losing your husband or wife in most circumstances is a trauma. So maybe I just have to accept being out of control for a while is my "new normal" and not ask too many questions because I am not going to like it if there are no answers. All of us live with that sense of hopelessness and powerlessness in the way that stroke intrudes on our comfortable lives. We have made plans and they have now come to nothing but life deals us many a blow and somehow we learn to live with the consequences. We all do a bit of tamtrum throwing when that happens. Of course we all say: "why me?" as I sometimes do now. In my selfish way I want this painful time to be over and for me to get to the "happy ever after" stage of my life. But given my past record that is not going to happen. I am not sure there is a "happy ever after" in my future. Instead, as usual, I will have to commit to acceptance, of where I am, where I am going and where I will finish up. And enjoy the journey and the view along the way.I will get through it as bravely as I can, remembering to smile and "fake it till you make it".

Nancy, you have my commisserations, Ray was stubborn but your Dan is the Grand Master of Stubborn. If it had been my choice I would have called an ambulance, thrown a monster tantrum myself so they knew I was no longer coping and seen him carted off...hospitals are very good at just letting people die if they want to. I wish I had a solution to your problem but I don't. I would just say put all plans on hold for the present, take it hour by hour, day by day. Take a break every two hours of at least twenty minutes when you do something you like to do. I think maybe you are like a mother with a constantly crying baby and need to know when you have to attend to the cry and when it is safe to just ignore it. I never had the problem to the extent you have, someone else here may have better advice but I want to say I hear you and wish there was something you could do this instant to change things. Sue.

So true.

Sometimes we step out in faith and God opens a whole new section of life through the doorway ahead of us. You can but try Henry, and if it is what you want, go for it! Sue,

One of the things I have learned through the journey is that brick walls have to be dismantled one brick at a time. Like consistant exercise programs it is a slow method but in the end the wall is down and your resolve and strength have made it through. Sue.

Good you are getting to do some cleaning and tidying befre you sisters come Leah. Then when all is done you can just settle back and enjoy the visit. Sue.

Lenny it is such a good idea to take your celebrations and some nice food to share with your mother-in-law. Hope it was a lovely family time together. Sue.

Loss, loss, loss, Nancy it is all about loss. Your loved one comes home from hospital and you are both so full of hope, your loved one makes a bit of progress, you are jubilant and celebrate every little step. Your friends and loved ones stop contacting, they know he is headed for a complete recovery so no need to contact you any more. It takes a while before you compare the progress in certain areas with the areas in which there has been no progress, emotional, physical, congitive. That is when we start to count the loss. This is when we also stop kidding ourselves and realise there is regression as well in some areas. I used to sing that song "Sunrise, sunset" sometimes when I thought of what we had gained and what we had lost, and what was now just slipping away from us. It is hard to keep readjusting our lives but that is what we need to do day by day. And gird up our loins for the battle ahead. Sue.

Debbbie, you are in control as much as it is possible to be. We caregivers always wait for the joker to come out of the pack. With the new challenges Bruce has, Kira's health, the weather, the carers lives and changes to your routine you cope as best you can. You do allow yourself some down time, I know that, but do it consciously by adding it into your schedule. Put a post-it note on Saturday afternoon - TIME OFF FOR DEBBIE. Sorry about the stormy weather, we've had some thunderstroms though it was mild and sunny today and isn't that wonderful for weekend weather?Praying for everyone in the path of the storms. Not sure about those that have the coastal views and then complain about the coastal weather though, seems if you build your house upon the sand you are not as wise as you could be, Sue.

As Asha has not commented yet I will say: "Stop fighting it, go with the flow," and on my own behalf just take one day at a time. (((hugs))) from Sue.

I had a session with a grief counsellor yesterday, same reason, couldn't see over the trees. I just need to get somewhere where I can see what I want in the immediate future and set some realistic goals and accept the single life. Good luck with your goal setting. Sue.

May I say "Bah Humbug!" on your behalf? I always said I finally got life figured out and it would throw something else at me and it sounds like you just got to that spot too. This is where the one day at a time philosophy comes in handy. I know it is hard not to look into the future and see it as "better" but I found the loss of the expectation of future happiness was replaced by the enjoyment of the present. I finally learned to do as Asha does and "go with the flow". A happy life with diabetes is doable if you have the co-operation of the person with it. Ray was a problem as he was a lover of cake and always thought that if I didn't see him eat it it didn't count. His mother, also an insulin dependent diabetic replaced sweet treats with crackers plus all kinds of toppings, amazing how much variety you can find in topping them. In the days of portion control she was allowed to have eight grapes and had to weigh bananas. I think the modern way of looking at diabetic diets is a lot different so find out what is allowable and work your meals and snacks out in advance if you can to make shopping for food and food preparation easier. I have a theory you should count fats too but very little research has been done into that. I just gave Ray his fats in the way of treats, eg icrecream and cooked our food for my low fat diet, adding mashed potato for him and leaving that off my menu. Triglycerides are thought to cause heart problems but I doubt there is a lot of proof and cholestrol, if you have it you have to deal with it. What a nuisance it all is. Ray finished up with 14 main medications, I often wonder what was worse the illnesses the conditions would have caused or the side effects of the various medications? Sue.

I have seen caregivers on here, myself among them, complain about lack of support, worry about loss of friends, decide in the end it is just them and their loved one and that is all that matters. He/she will be their BFF. In the next stage that is not enough. You are alone, and I mean alone. The family flock around for the funeral, the friends phone or send flowers or cards...a week goes by, family members may even stay a week or two. And then they are gone and you are in the silence. There is no-one there, you are alone.Coping with those sleepless nights and that cold and lonely feeling you will crymore than you have ever cried before, even though you thought you had mourned all through their illness those tears keep on coming. At this stage the lucky ones are those who still have a job to go back to, part-time can maybe build up to full-time. It must be hard going back, working with your sorrow still heavy on your hearts but having an income of some kind sure helps.There will still be some financial worries, sometimes health scares (because you have neglected your own health while looking after your loved one) and a lot of crying, more than you have ever cried before. After that slows down and you feel you are over that initial sadness starting to reach out to others will be the way to go forward. Why am I telling you this? I am urging you to keep life in perspective. Don't write people off because they can't handle the situation you are in. Keep in touch with as many people as you are able to regardless of whether they visit or not. Use the phone and the computer to stay in touch. Sooner or later you will again value the old friends, the ones who knew you is a teen, as a mature adult etc. These family and friends will be the keepers of your memories. Even in-laws have the photos of your kids, the little stories to tell about your beloved that you love to hear. When you are lost and alone and your loved one is still with you is nothing to how you feel after they are gone. So keep your friends, you will value them again in years to come. Sue.