swilkinson

Me too, keep your courage up my friend.

Glad you have resolved the problem Sarah and are back writing blogs again. Our Blog community was very small for a while. So sad Gary is having nightmares as a good night's sleep for him makes life easier for you. The bathroom issue must be hard,I was always glad we had our shower room set up for Ray and grateful to the friends that made it possible. Enjoy your new little dog and his antics..

Ruth I am glad you and William are safe. Have you any news of Fred? A lot of people are wondering if he is okay. We have bad floods in Australia some years and th generosity of the community in helping out always amazes me. Keep well.

Such a good son. Yes, falling down those stairs would have been traumatic but with his help it didn't happen. (((hugs))) Sue.

You are a Wonderwoman Kelli, so confident and with patience to overcome the hurdles. That trip would be s a big task even for those who are able bodied and well sighted. You are one of the people on here who really inspire me. (((hugs))) Sue.

We went to the pool for a while years ago, then Ray refused to go. We bowled for a while, then Ray refused to go. Add picnics, going away anywhere but to our daughter's place. It seems that as age and disability combined to slow them down this is what happens. Go to exercises yourself for as long as you can Ruth, even if you have to pay someone to sit with William. You do need that time away from caregiving. Sue.

Nancy, there is no easy way through this. I am still on one of the dementia sites and the caregivers there also go through this and it is heartbreaking. Luckily by the time Ray got to this stage he was in care and with all that he had wrong with him eating or not eating was the least of the problems. You do need a break, to do things that do not involve Dan. I am sorry about Beth, this can be hard on the adult children too, as you say she loves her dad and hates what is happening to him. My kids were older as Ray was much older than Dan but still I saw how much his last few years impacted on them too. From my pastoral visits to those in nursing homes I often meet up with the question: "Why can't I just die?" and that is not an easy one to answer, especially as most of them have been eager to extend their lives with pacemakers etc and now it is a bit late to realise they can't die in a way that is easy and painless. Of course when we are young and relatively healthy we don't think the same way. Just know that I am thinking of you both and praying for your family that this will become easier to bear. Sue.

Carol, I found with the travel Ray and I did that we couldn't do it independently because of his strokes but we could still travel within Australia and that pleased us both. Glad you can still travel and enjoy life.

Nancy, I can only send you a hug and keep you both in my prayers. It has been a long hard road for you and your family and I commend all of you for the way you have gone through it. I hope that his end is peaceful and you all have good memories to fall back on from before this most difficult time. Sue.

Sometimes I want to cross the miles and be right there with you to give you a hug. I know the pain of loss, I experience it through my nursing home visits, visiting a person for years and then they go. It is sad but the great thing is to have had those times with them, talking and laughing with them when we first encountered, then as they go silent just sitting and being with them. I remember the laughing times and am glad I knew them back then. BUT it tears at my heart sometimes to see the changes in them and I have to remember to just be thankful for the privilege of being a small part of their lives. As I am grateful for being a part of yours. (((Hugs)))

I really agree with what you have written here Asha. Somehow through all we go through if we trust we are led through a path that brings us to what is best for us.

On Saturday I went to the Combined Stroke Groups morning tea. I have stepped back from the Stroke Recovery group that Ray and I belonged to “WAGS” in the last six months but got a reminder email from one of my friends who belongs to that group and then a phone call to ask why I was neglecting to meet up with my good friends there. So I decided to go back to meet up with them again and was glad I did. Friends from all the different parts of our life are a gift and I should never stop being thankful for that group of people. The guest speaker was a Professor of Neurology and he talked about the various methods of rehabilitation and how the type of rehabilitation a stroke survivor needs is reviewed in a stroke unit and ideally a program tailored to that individual. I don't need to tell you all that the theory is marvellous but the application of that method outside of teaching hospitals is less likely to happen. He spoke until the time was up so luckily no-one could tell him their ideas on that subject as I think some of the replies may have been harsh, particularly from those who had had a very different experience during their own recovery. It was good to see so many friends I had made there, sad to think that some have passed on or are now in nursing homes and unable to attend. Time moves on, I have been a member of that group since 2006 so a lot has happened to them and to me in that time. It is sad to see some of the older caregivers struggling now with the caring role. I know how much the last few years of looking after Ray exhausted me so can empathise with them. Just being a part of that group is a boost to them, the men still go to Scallywags ( lunch and a chat) once a fortnight and the Carers monthly lunch group still gather. Unfortunately I can't go to that as it is on the same Saturday as our Market day at church. I have been trying to meet up with my 83 year old friend who looks after her son at least once a week and at least chat to her for a while. She is really slowing down now and showing her age and I feel for her as sooner or later her son will have to go into care and that will break her heart. But for a lot of people like my friend there isn't a lot of support from other family members so little relief from the caregiver role. Her other son looks after his wife who has cancer so he is not unwilling but unable to help as much as he would like to. Her daughter lives in another state and does come to see her two or three times a year but that is nowhere near enough. I went out to Broken Hill to visit Trevor for ten days and came back home last Tuesday. The first four days Alice was with us and then we had a few days at home.Trevor worked a few hours most of those days. I have had many trips now to Broken Hill so there is not much I haven't seen there. I always enjoy walking a few houses up and seeing the shingle-back lizards at the home of a lady who volunteers for WIRES, one of the organisations that helps injured wild life. Shingle-backs are slow so an easy target on the open road. She had over 30 adults and many young lizards in her back yard. She said she is not allowed to release them until mid-August as they sleep most of winter and then she has to make sure they are eating before releasing them. This visit we did go to a few Art Galleries. There was a n exhibition of works by Outback Artists at the Regional Art Gallery and I really enjoyed that. I was surprised that the “receptionist” had a blue tee shirt and old paint speckled trousers on but he pointed out which exhibits he was sure we would want to see. He was right and I really enjoyed the diversity of paintings of the wonderful red soil and brilliant blue skies in so many different styles. Afterwards he told us he was actually the installer and the receptionist had gone home to prepare for the special opening that night. We were lucky to be there on that day I think. Then we drove down to Adelaide, a seven hour drive from Broken Hill. I wanted to go and visit my older son and his partner and family there as his partner has had what was at first called a series of Tias and then a small stroke. She has recovered quite well with the exception of some slowness of thought, massive fatigue issues and a real loss of confidence. She walks like an old lady now (her words) although she is in her early 40s and I can see she is upset because after three months she knew she still didn't have the energy to go back to full time work and so lost her job. We did talk a little about my experience with Ray with strokes and I hope that helped. Not much more I can do for them being so far away except keep in touch. It is still wintery here but I can tell by the longer days and the frantic activities of the birds that Spring is now not far away. That is something to be happy about.

You may have noticed I don't do a Blog Report at the moment, that is because there are only three or four blogs a week at this time and not as many people reading them as usual despite the growing numbers of members on here. So why should YOU read the blogs? For Survivors: Reading about what other survivors are going through gives you an insight into the struggles others go through and what they feel they have accomplished. I went to my Stroke Recovery group today to a combined Morning Tea with other Clubs, about 80 of us there and we had a Professor of Neurology as guest speaker and he said one of the benefits of any Stroke group is that it gives you the feeling that you are not alone, gives you an idea of the range of deficits and gives you new social skills that are beneficial to your recovery. I have always found hope and inspiration in other people's stories and learned from them. Many of our bloggers here provide information on what you need to do about many issues affecting stroke survivors and their caregivers and family members. So being a part of this Blog Community gives you some of those benefits. For Caregivers. I found in my own journey that the Stroke Recovery group Ray and I belonged to and Strokenet where the two most important organizations in my life. For many years of the stroke journey because of our ages I felt so alone in that most of my peer group had no idea what Ray and I were going through.The feeling that someone on here knew what I was going through, had some empathy for what I was dealing with and what I was feeling made a huge difference to my life. I don't know what you feel as a caregiver until you put it into writing, either as a post or a blog. Either way I can communicate with you, support you as much as I can and help you not to feel alone in your struggles. And you will find that knowing that you are understood does make a big difference in your life. So if you haven't blogged for a while do an update, if you haven't blogged at all now is the time to start and if you are blogging right now Thank you very much. Sue.

Asha, we all do too much, you taught me that, so rest and relax now and things will turn out okay. BUT you have all those new precious memories so it was worth the effort.

Thanks Pam.

Pam, I have two sons and saw them both last week. I travelled out to Broken Hill and Trev took me down to see Steve in Adelaide. It was good to spend time with them both. I'll blog about it later, too tired now.

Asha, with your philosphical nature you will settle into a new environment in your own unique way. It is hard to make somewhere your own space so take it easy, make small changes and one day you will look around and love what you see.

I did go out and have coffee at the shopping centre and found some acquaintances to talk to. I came home and did some of the housework but as the sun came out later in the afternoon had some time out on the verandah reading as well. All in all a good day.

Oh winter woes are upon us, we are expecting the coldest weekend of the year this coming weekend. It must be true it was on Facebook! Seriously there has been a debate about rising price of heating a home and how a lot of older people are scrimping on heating because of high power bills. I admit to be one of them I sit at night with a rug over my knees, I make them anyway so have a lot on hand. I have a hot water bottle to warm my bed up, old fashioned I know but it does the job, extra blankets and a quilt keep me warm. It is not a problem for me to live this way as I have always been in a situation where you opened doors and windows to keep cool in summer and closed them to keep warm in winter. No snow here though there was a sheen of frost this morning, first time for a few years. Because i am close to a beach the warmer temps usually make frost hard to form so it must be colder than usual. I can't say I do winter happily. I don't heat my house unless I have visitors so I walk around in layers of clothes and looking like a penguin. Not a good look but as I am alone does it matter? I spend a lot of extra time in the shopping centre as it is not pleasant on the beach and going for a walk with the wind blowing is uncomfortable so I walk the mall. In doing so I meet up with a lot of people I don't see in summer when we are all scattered to various activities. Yesterday I met two people who I knew in the 80s and have seen very little of since as they moved away. Both had come back to family events, fortunately neither to funerals which is the main reason people come back home from the warmer north in winter. Of course a lot of my contemporaries are turning 70 this year so there are a few people visiting to celebrate an "O" birthday. I didn't hear from any of my children this week which led a friend and I to have one of those macabre discussions about how long our bodies may lies undisturbed after we die. Just the kind of conversation to have over a cup of coffee! But those topics are often in the news this time of the year. I do ask my daughter to make sure she contacts me ( or I her) at least once a week but she and her family have been up with her husband's mother for a few days so didn't remember to ring me. Her m-in-law had a fall a week ago reaching up to get something out of a cupboard so they were a bit worried, but all is well and she is fine after the fall. She is almost blind but knows where everything is in her own house so manages fairly well. I think the time will come when that is not the case but have to say the two brothers do make sure between them that she is called every few days. I also worry about older folk at the church who didn't appear on the previous Sunday, of course not all come regularly so I only ring if they have been away for a few weeks as I don't want them to think I am harassing them. Some of them I also catch up with in the local shopping centre as the older ones particularly may have a carer each fortnight who brings them shopping as part of a socialization program. The retirement village people have weekly buses for the same purpose. I can meet old friends that way too if I shop on Thursdays. The world of the widow is a small one I find, plenty to keep busy us but not a lot of companionship unless you seek it out. Which of course I do. I am lucky I have a few people I can have coffee with regularly. I do advise people who tell me they are lonely to do the same although I know that is not everyone's idea of how to fill their days. For people who have cared for someone long term as I did with Ray so many of our friendships broke down when we could no longer do what our friends wanted us to. Ray and I missed out on so many engagement parties, weddings etc because they were held at venues without lifts, with little hole-in-the-corner bathrooms that couldn't be accessed from a wheelchair, where the venue was not disabled friendly, like one family who said they didn't invite us to the wedding because it was on a boat!. I would rather they had invited us as at least we could have waited on the wharf to wish the young couple well. I sometime see old friends who say that their daughter or son has been married ten years or more and look at me with a guilty look suddenly remembering that we weren't invited to the happy event. Nothing I can do about that as it is all water under the bridge now, so to speak. .And so filling the days is what I do. Keeping myself busy can build up though and so I resigned from a couple of jobs I have been doing for a long time in the church. I no longer want to do days that are too long and leave me still tired the next day. That is not what i want this part of my life to be about. I have had plenty of those days in the past. The rainbow scarf I knitted for a friend has been handed over and she was very pleased with it. I am making another version for myself, yes, some people could get the wrong impression but if it goes with an outfit who cares? I think as I have aged I am less eager to be seen in a "good light", I don't mind if something I do is seen as being a little controversial or open to discussion. As a church person I am following someone who did the same, left himself open to discussion. The Way of the Cross is like that. Hopefully is is also comforting and brings peace to people. I did preach on that last Sunday. I caught up with an old friend on Monday, we met at a cafe near a railway station as he is without a car on his visit to the coast. It is good to catch up with a person who is non-judgemental, can hold a reasonable conversation and knows me well enough not to have to explain every sentence we exchange, someone I feel at home with. Ray and I used to go on picnics with him and his grandsons, one of whom is autistic. It was great to catch up on their current doings. He lives with his daughter now. We can both picture J walking over Ray across the bench he was sitting on on his way to a place he was focused on. Ray of course yelped out and the boy looked down and said: "Sorry" and continued his journey. Life is full of incidents like that, serious at the time but something to laugh at when we look back on them. And this friend knows what it is to have someone special with a disability and so was a great support to me. His grandkids called us Uncle and Aunty and it was great to know that one of them is to be married soon. We live in a big country and often have friends too far away to visit often but still often in our thoughts. So the decision this morning is whether to stay home to do some housework and some extra cooking for the freezer or whether to dress up warmly and go out for a coffee. Which do you think I should do?

Way to go Tracy!!! Getting fit, keeping occupied and hopefully socializing to (cup of coffee after a workout seems the way to go in Australia). Looking forward to you documenting some of your return to fitness adventures. Sue.

The trip out sounds wonderful, a time to enjoy living again.

Asha, what you say is very true, those people who stood by us through thick and thin did so because they saw something in us that was worth the effort they put into the friendship. Yes, we all have times of comparing ourselves to others and wondering if we are *whatever* compared to that special someone. What we forget is that we all have unique qualities,something special about us that that other person does not so we are okay as we are.

One of the church ladies has just gone into the same nursing facility as Ray was in. I knew I had to visit her but thought it would be okay as it is now so long since Ray died there. I went into the facility this morning but she had gone out on a little bus trip (she is at hostel level so able to walk etc) so I missed out on seeing her this visit. The secretary said she would leave a note to say I visited. I found it more difficult than I thought as while I was walking through the facility with another staff member all the staff looked at me hesitatingly and one or two asked if they knew me. Of course this meant telling them that my husband Ray had been there in 2011 and 2012 until he died. I didn't think about that aspect of the visiting and so it came as a shock to me. I went outside as soon as I could feeling so deeply sad again. It will get easier the more I visit, I know that from visiting people in the facility where Mum was, but it was like revisiting an old and painful episode in my life today. I went to my daughter's last weekend and had some time with her as we went to an ordination at Newcastle Cathedral where a friend of mine was being ordained a deacon. Shirley didn't go in uniform but I did introduce her as a Captain in the Salvation Army to those who I mixed with in the 90s. It is amazing seeing people 20 years on, I guess they saw me as I saw them, 20 years older but still recognizable as the friends they had been back then. Some of them I see on Facebook so not all were unfamiliar. In a way it was like a school reunion. Unfortunately as it was at night, and a very cold night at that, we didn't linger. I would have liked to have spent time with some of the people I was close to and do the "what have you been doing since..." that you have an opportunity to do at school reunions. The college I attended to do my Diploma in Theology is now close so no reunions are possible there now. Staying with my daughter is good as I catch up with the doings of her two children. It is winter school holidays and really a time to relax and catch up on sleep for my grandson and to catch up with old and previously loved TV programs for my grand daughter. They always hire a "Granma" movie, thought I am not sure "Monster-in'law" would have been my choice. I have an idea my son in law just liked the title! We had a couple of lunches out and on Saturday a walk around that part of Newcastle that was affected by the earthquake many years ago. It was a reminder to me that it is possible to have something like an earthquake happen and then rebuild even if the rebuilding is a slow and painful process. I guess that is one of the things I am learning through widowhood. Just lately I have been doing a lot of listening to people, in the church and in other organisations I belong to. I think people are always waiting for someone to make the right responses so they can tell their story. In this age when families are so widely spread and the family unit of grandparents, uncles , aunts, cousins and siblings all living close by is over it is harder for people to find someone to listen to their life story. I have the time and the training so it is not a problem for me as long as I don't take their pain on board, as I sometime find myself doing. Sometimes the stories of loss and loneliness, frustration and confusion are too similar to what I have experienced in my own life and I need to back gently away from them. I have the skills to do this but do not always catch myself in time and so I come away with some of their sadness. It was easier when I was a telephone counselor as then I could simply finish the call, hang up and make myself a cup of tea before the next sad call came in. My younger son is having some problems so I talk to him fairly frequently again. It is nothing major, his employer, the owner of the cleaning company he works for, looks like handing over the business to her son and he is not the manager she is. Life is precarious in a small city that has lost it's industry and now the many unemployed are competing for a smaller and smaller pool of jobs. He is afraid that if he loses the work he has things will get really tough for him. I understand that fear as it happened to Ray a couple of times in our younger days. Thank goodness my mother had taught me to budget well and somehow we always got through the hard times. On my next visit I will see if he needs anything I can help with. Like me he often has no-one to discuss things with now and that leaves him worrying more than he needs to. He knows he can also call on his sister for advice which is good. She does budgeting as part of her welfare work. Apart from that my life simply goes on as usual. I have got over the "is this all there is to life?" feeling and now know that what I have is enough. I was talking to a person at the nursing home who was visiting his far-too-young wife who is almost in a catatonic state now and he said: "I have all these dreams of what I will do after all of this is over." I wanted to tell him that I was like that too and none of my life had worked out the way I envisioned it but I didn't. I guess we all need to find our future path in our own way and in our own time.

Kelli, I would think telling you of the possibility that you would be like this should have been included in what you were told prior to the operation. I'm sorry it has made life so difficult for you. Are there no solutions to the problem or has the specialist any suggestions? I haven't had much dealing with morning sickness except for pregnancy and only had vertigo when one of my doctors gave me a birth control pill that disagreed with me. I dealt with that by changing the brand. Maybe someone will come up with a solution, telling you "this is normal" really is not a solution at all.

Wow Sarah, that was a marathon and it is wonderful that you got it all done. I so admire your tenacity in the way you keep going until the job is done. You made me laugh - the house designed with a pigeon as the building consultant! But i am sure you will find a solution, here some buildings have a series of spikes so the pigeons can't land. I'm glad you had enough helpers to get in with a minimum of fuss. Now to learn all there is, like where he nearest massage is available. Enjoy your new home.