swilkinson

Looks great Sandy. I did consider one for Ray but the wheelchair worked fine for us.There is a lighter one I see around the shops here but don't know what the comparison is. Whatever gets you out to see the neighborhood, experience the flavours or taste the differences as one of our ads for outdoor markets says.

Katrina, I am learning some of the same insights you are about living alone. I am glad you have found a good group of friends to love and support you. That has been one of my advantages as soon as Ray died the older widows in my church took me into their group and have been a great support to me. See how finding the positives in life can make you aware of your own gifts and how you can use them to help others. I am sure you are a blessing to many without even realising it. Sue,

Where is the person who looks after me when I am sick? After all those years as a caregiver that would seem obvious...it's me! Sad but true. I had the family visit end on Thursday, went to a funeral last Friday and woke in the middle of the night with a huge headache and burning up with fever. Plenty of OTC medications about the place so I got dosed up with those that would lower the temp, fix the headache and...nope did not make me go back to sleep. Saturday, so sick, stay down, make up a nest in the lounge room so I can watch tv while I sleep on and off, more medications, Sunday the same. Would it be worth going to the doctor? No, nothing much fixes a virus except for rest and plenty of fluids so no point. By Monday the chesty cough was driving me mad, the cough medicine no longer helped, old fashioned salt water gargle didn't either. So hit the vitamins and see if that will help, throw in an antihistamine just to see if that makes the nose stop. Aaargh! I'm not going to renew the contract with my fairy godmother, where is she when I need her? Hello...anybody out there? Tuesday, oh look I can stand up, how nice! Might wash my hair and okay that was tiring. I have to be really careful when I get a virus that it doesn't lead to pneumonia so an assortment of warm clothes on and make sure there is an extra coat by the back door in case I need to go outside. I am so glad I did a big shop on Thursday afternoon as that means there is no need to go out for food for a week if necessary. I have learned a few things on my widow journey. Like if you want someone to rely on look in the mirror, that's her. Wednesday today and I am starting to feel better. Not good, just better. I managed to go to chat, it is so easy with Sally as my co-host, in fact we did double shift as a new chatter Joni (herdaughter) came on just as we were closing down and we spent some time with her. Thanks for staying on Sally. I still need to line up someone to take my Scripture lesson tomorrow as I shouldn't take the cough into a school. I love those times but I have had to cancel a whole week of activities so far so I guess one more thing won't stop the world from turning. I am thankful that I am not also trying to take care of a survivor while I am so sick. That is what I did for 13 years, crawled out of bed, set up breakfast for Ray, attended to his needs, set up lunch, supervised, cleaned up, looked after, set up dinner etc. I can remember how bad that felt. Looking after myself is a snap by comparison. But a small part of me still says :"Why isn't there someone to look after me?" This is a vent, not about life but about circumstances. How do I cope with what comes up? I hope I have enough emergency measures in place that no major crisis happens but we never know do we? Left over from my caring days is an irrational fear that the good times are always followed by bad times. I know it doesn't have to be so but I know it often is. I just have to convince myself that it doesn't matter, somehow I will handle whatever comes along.

Definitely had those crazy days when I was a full-time caregiver. It is like landing in the middle of a tornado. But you nailed it, in more ways than one. So lots of little interruptions to life as you know it and a nice glass of wine at the end of the day. Not so bad really....lol.

Katrina sometimes when I read your blog I want to make a comment but don't know what to say. I am so sorry about your Mom having the accident, I am so glad your Dad is there for you and like you I wish there is healing for you. (((hugs))) from Sue.

Ray had numbness after his first stroke in 1990. He continued to have it for many years but I think got used to it and learned to live with it. You need to ask your neurologist about it. Welcome to the Blog Community, I am Sue, from Australia, caregiver to my husband Ray who died in 2012. I am still a volunteer on here and am the Moderator in the Blog Community. I read all the Blogs and comment when I can if only to give you a warm welcome. Hope to read more of your journey with stroke as you add more blogs. (((hugs))) from Sue.

Great news Jamie. Well done.

Nancy, you got it fixed and that is the main thing. None of this is going to get easier. I don't think you will ever get a handle on the situation as Dan seems to come up with new variations, just living with it will be your new normal.

So sorry for the loss of your Tara. Yes, I agree, a pet of over five years is a member of your family and so there is now a hole in your lives. But you still have each other which is a blessing. Have a smile whenever you remember that those happier days with Tara and be thankful for what she brought to your lives.

Happy Birthday to your wife. I love to hear about her. Praise dancing - now there is a way to praise God for His goodness to you both.I know you will enjoy your trip whenever you go so the company of your wife's sister and her husband will be a bonus. Enjoy life every day Fred, that is a bonus too.

Terry, any time you survive bad luck and live to tell the tale is a bonus. Had a similar experience many years ago with our car pulling an old caravan. One of the brakes on the caravan bound up and we had plenty of smoke and fire! How welcome is that camp sit at the end of that sort of day? Thankfully yours was covered by insurance eh?

The family have gone home,it is always sad to farewell them but also time to rejoice in what we experienced together and what we are to each other. I have a lot to be thankful for and often fail miserably. I have too much time to think and it is easy to get miserable and mopey and let the slights and disappointments in life get out of perspective. Three days with my Salvationist family whether I am at their place or they are here is always good for me. This time there was the bonus of having the little cousins together too. We had two full days with each other and last night Pam and Steve's three children were here for dinner,probably for the last get-together for a while. There were eight of us altogether as we had left Pam at home with a headache. There was plenty of time to reinforce those happy family memories. I will be sad when they have to go to live with their father down in Adelaide but I think we all know that is going to happen now and have accepted that our relationship will change because of that too. I am hoping to see them every time they come to visit their Mum and have some time to keep the bonds we have strong. But who ever knows what the future holds? Thanks to HostSally for carrying on hosting chat when I have to duck out. Anyone who has not has a lot to do with Sally will not realise what a rock she is to me. I have only stayed on at Strokenet as a volunteer because of the strong teams we have here. It is a wonder to me that people like Sally have time to do the voluntary work they do with their loved ones calling out to them for help. Sally just types in "brb" and a few minutes later there she is as delightful as ever, ready to go with the conversation. We had Hostdennis as an observer in chat too so that was a bonus for us. The winds got rather strong last night, we had been warned to do the clean up, tie down routine I associate as being a routine for people in areas where there are hurricanes or cyclones but I do not expect to have to do it here. I woke up to a lot of leaf litter on my lawn and all over the back yard so Christopher helped me clean that up this morning. Craig fixed the two lights I had that both blinked on and off by giving them new starters and Naomi helped in any way she could. It is help with such small things that can lighten the load for me. Now I have to think that it is not so long to the end of winter when I can pay them a returned visit. I know I do not always come across as a lonely person but I am. No-one knows how often I just want to run back home when I hear a certain song, see couples walking hand-in-hand or dancing cheek-to cheek, sometimes just sitting in a restaurant talking together. All of this I took for granted when Ray was alive. Okay, going out with him in a wheelchair was no picnic and took a lot of strategic planning but once we were there we were together and that is what counted. It was one of the things I took for granted, that we would always be together.When my family is here I don't have to go out alone so I enjoyed three meals out in three days and it was wonderful, being part of a group, not just being alone. It has been over three years since Ray was home with me. We did have Trevor and Edie's wedding in August 2011 and that was the last time we ate out as a complete family. I still feel Ray is missing from our family gatherings. One of the meals out was a late birthday celebration for me as I was last with Shirley and family in May. We went to a family owned Chinese restaurant where for many years we have been going as a family in fact Shirley, who is now in her forties, first went there when she was two. It is owned by the same family as then so the mother came out and greeted us courteously and the son who is the manager and waiter and whatever is needed called each of the adults by name. That is something precious in this day and age. And also the food is good still, so we always enjoy it. It has been over three years since Ray has lived here but one night last week I was watching something on television and turned to him and said...but of course he wasn't here now and so I felt foolish and a bit teary. I know he will always be a part of my life and if I do meet someone else that will not take anything away from the time I had with Ray by my side. I still hear him sometimes calling out in the night, I know it is not real but the old habits and memories of our old life are still here. There is no explaining why this all happens so I just accept that it does.

Most of my grandchildren only know Ray as "Pa in the wheelchair". I think Christopher and Tori (14 and 13) probably remember him walking I don't think the younger ones would. Alice will only know he held her from the one precious photo we took of them together in August 2012. We have stories that begin: "Before Pa had the strokes" or "When we came to your place on the plane" and many many of those that I hope will keep Ray in their memories.These are told by the parents and by me. I think we have to maximise the good memories and minamise the bad ones if we can.

Jamie, none of us understand each other completely. I was a caregiver for so many years but I could still get it wrong with someone else. I'm sure she didn't think badly of you for your wish to be independent. You did handle it with grace and another lesson learnt.

Nancy, I had an expression for Ray's neglect, his disregard for me and any pain I was in. I used to say:"It's the dementia talking." Now i know Dan does not have dementia but he does have brain damage so it is the brain damage talking. The same for the hate looks, it is not Dan, the lovely man you married, it is the brain damage. So let it go, smile brightly, move on, nothing else you can do. I got too hurt just feeling hurt so acceptance was the way out. Accept, smile, move on. Just my two cents worth. But BIG (((hugs))) for you as you struggle with all of this. Sue.

Cindy, a death in the family gets us to reassess our own life. Sometimes we don't like what we see but it is what it is. Start filling your life. I used to be also housebound with Ray but I would knit, sew, crochet, play on the computer, even volunteer on the computer as I have been a chat host on this site since 2006!!! A long time for a volunteer position. I also kept up with the things that were important to me - church, family and friends, that is those who had stuck by Ray and I for many years. I am not suggesting you do any of this, I am going to suggest you look at the things you would like to do and somehow fit them into your life. No-one can be just a caregiver, we all need to have extensions to our personality that are unique to us, that express us as we actually are. Not easy to see where to fit it in but 15 minutes a day of your favourite thing to do is enough, something to look forward to. I am so sorry you find yourself in this bad space right now, I have been there a lot of times, but I always got out as fast as I could. Host Bonnie was my "boss" here when I was first a chat host and she would oftern post a comment on my "down" blogs saying: "It is okay to sit on the pity pot as long as you flush." So I am passing that message on to you, hope you feel strong enough to do it.n

Fantastic news David. Now for some Speech therapy to see if that fixes the problem.

Great post Lenny. You are one of the great encouragers on this site. I hope all the newbie survivors read what you write and are encouraged by it. Keep up the good work. Sue.

Nice car George. Can't say I have ever wanted one but this sounds as if it is a new hobby for you and takes you places so good for you. I smiled at the description of those things that come with our advancing years. add me to that list too. A few hours in the garden and I moan all the next day. Don't know what the gallery problems you've struck is about but message bblack (brice black) and he may be able to help you as he is our tech support. Sue.

Happy Birthday to Larry, glad the visit went well and yes, good luck with predicting the weather wherever you are on the planet. I understand about the limitations with things like driving someone to the airport but if you have someone to step in that is fine. After all it is no good looking for help and then not using it when you have the need. I took a long time to learn that lesson myself. And let us know which Chat day you want as Julie's Birthday Surprise Party...lol.

Sarah, that is very sensible. Sometimes the best thing you can do for someone is to give them the information so that they can do whatever needs doing for themselves. It is something we do here at Strokenet, supply people with the information they need. Yes, some people do tell you what you should do when they just as easily can do it for themselves with a little help.

"Now is the winter of our discontent" to quote Shakespeare. Or just plain old winter, wind howling, clouds flowing, trees shedding leaves and branches (gum trees do that every time there is a wind) noises like banging and shushing and grating, I think caused by the dead fronds hanging down on the palm trees next door. Not easy to sleep while all of that is going on so I have had a couple of bad nights. So has the baby next door who is teething I suppose so she and I have been waking at all hours. I do turn the light on and read though so I am not laying there brooding. More changes in the church. Had a meeting today and we are going to do some things differently. Oh dear, he is so young! I don;t think he realises that when you change from one thing to another it is harder for older people to rearrange their lives accordingly so numbers are low and there are murmurs of crisis. Ho Hum, think I have been in this spot a few times over the last many years of church attendance. Things get bad, people get active, things get better, same as in any business or organization really. The downward slide starts when everybody sees it as somebody else's job and no actions are taken. I am having some problems with people who want me to do more...mostly a hazy idea of what would make my life better and do more for their organization! Some of the organisations I belong to would like me to free up time to do more with them. I would like more time to myself to tell you the truth, I want to do less rather than more. I don't want to give up my new freedom to tie myself down by "silver bands". The idea of golden chains or silver bands is to show a person is still a prisoner, just of a superior kind and that is somewhat how I feel now. Because of my changing roles at church there is some confusion about what I am supposed to be doing. There has been a lot of changes in the congregations with the new times of services and I am switching between the services to find out what people's needs are now and that means that I am suddenly told that I should have been at xxx place doing yyy task as I am a member of a certain congregation. I had that accusation today. I understand where the person is coming from but I can't be in two places at once. I think I need to set up some lists of who goes where and why and contact people to see what they want. In the meantime it would be nice to be taken off the rosters to free up my time to take on new tasks. Sometimes I feel as if I am still cast in the caregiver mold and that others would still see me as a caregiver inside their particular organization particularly in respect to visiting those who are in hospital and there seem to be so many, it being cold and flu season and thence pneumonia season and so many older people having succumbed to that this winter. I did so much of that with Ray towards the end of his life I am not sure I could face it now. I know people see me as having lots of free time and it is true I could fill my life with more and more busyness but that is not the way I want to live life right now. It is school holidays for the next two weeks and so far no demand for Granma as spare child minder. Thank goodness. I love my grandchildren and cherish my time with them but I am not really set up for minding them at home in winter. I have a lot of toys still to sort out though. With the oldest at 14 and the youngest aged two I do have a lot of children's toys here. Sorting them is another thing on my winter to do list. Once upon a time I used to see my life as a roundabout particularly when Ray was in a medical loop where we visited doctors, specialists, therapists etc in a never-ending cycle. Now my life is more like a see saw with it's ups and downs. I want to smooth out the bumps a bit and make it a more even rhythm of tasks and rests. I want to feel more in control of what I do and less at the beck and call of others. I know that it is going to take a little gentle confrontation to assert my needs instead of an assumed availability. I am not really looking forward to that. But in order to do what I want to do, and am capable of doing, I have to lower other people's expectations of what they expect me to do and suppress their need to give me new tasks to fill in my "free time". Never an easy task, changing someone else's mind, so wish me luck with it..

Davaid Ray had swallowing difficulties probably from the stroke in 2007 onwards. That was the one where they send us home at 3am. So no therapy afterwards for a long time till he had a bad chest infection followed by pneumonia almost a year later and then had speech therapy. The speech therapist did tests with and without xrays being taken and found his swallowing ability pretty poor. She taught him to swallow twice and to check if he thought there was any amount of food left in his mouth. Ray couldn't wash food down with liquid or he would choke. In the end he was on thickened fluids and pureed food for a long time but that was due to progressive TIAs, fits and seizures, Strangely it would seem like a problem for a while and then he would be okay for a while again. See if you can get a doctor to recommend some speech therapy and see if that helps. Some things seem only temporary and I used to wonder with Ray if he had had a TIA or something that brought it on. The human body can be quite quirky sometimes. Anyway,see the doctor to set your mind at rest.

Debbie, there are special people in all of our lives who have blessed us in such a way that we need to acknowledge that on their death. I am glad Bruce was able to pay this tribute to a wonderful woman who had been such an influence for good in his life. And that you were able to enable that to happen.

I helped with VBS for a few years too. I taught 5-7 year olds,I just loved it! They could read and draw so plenty of book work to do as well as singing, craft, plays, games and fun in general. I am glad you get to be there and join in at an adult level, I am sure it will be a wonderful time for you. I echo Colleen's words "you are really coming along."