swilkinson

He is so handsome. Yes, giving them new hope helps us to give ourselves hope too. May you and Fred have many happy years together.

I understand what you are saying. i think sometimes instead of love and romance i would like friendship and steadiness. You seem to have found that wonderful balance in your husband. And that is good.

Nancy, the guilt doesn't leave, you just get used to it. I only had fifteen months with Ray in hospital and then the nursing home before he died. I knew I could not have taken care of him without help and I simply couldn't get that help. But still , even now, I have the nightmares of him calling out for me in the nursing home. As time passes you just learn to lessen the effect it has on you. Remember you are a good person, the job was too hard for one person to handle and him being in a nursing facility is the next best thing. Do encourage others to visit him, just short periods, 20 - 30 minutes. It makes a difference to the person and to the way the staff treat them too. And having someone come visit is a gift. I know it was to Ray.

Pam all freedom is precious. Enjoy every moment of when you are out in the great outdoors. So sorry you have the huffy encounter with Bossy nurse. Why do they have to make you miserable because they are miserable? I often wondered that with encounters I had with hospital nurses during Ray's many hospitalizations. Does it hurt them to smile I used to wonder?.

Thank you Jay, this fitted into something I was troubled about today.

Yes, you are officially a tree hugger now and we are thankful for that tree being right where you needed it.

Sometimes we connect to people at a time when they are reassessing their own lives. We never know what effect a personal encounter might have do we? Good for you Sarah, you have a big heart and a kindness and humanity few have, maybe he was simply touched by the kindness you showed him.

Tonight at Lions I got an award, it was one of those strange ones that gets you thinking about life. I was awarded Grandparent of the Year. Originally this award would have been for younger men who became a grandparent for the first time or had some outstanding number of children. Our Club has awarded it to great grandparents too. Tonight I got it for what the former president ( it was held for me after the changeover dinner when I was in England) said was special circumstances, I guess the struggle I have been supporting Trevor in as he tries to get increased access to his daughter Alice, and also for my work with many children, which would be the kids of our church's Messy Church program. I wonder if we ever think we deserve an award. I have been given a few in my time, all from the various Clubs and self-help groups I have belonged to. Some like my "Dancing Diva" award that I got last year at the end of the WAGS Women's Weekend are of course joke awards. They are fun to get but not to be taken too seriously. Others like the Carer of the Year Award from the Hunter Valley combined Stroke Recovery groups I much appreciated as it is awarded for being an outstanding carer and is a hard award to get (well in my case it represented an award for looking after a fairly high care spouse for over twelve years, plus the work I did in the community to promote stroke awareness (including what I do on here). Personally I don't think I need an award for doing what I ought to do anyway. I supported my husband because I took those old fashioned vows on my wedding day, "till death us do part" admittedly I failed to look after him all the way to death but he had to have more support than I could offer at home so he had to go into the nursing home for the last year of his life. The same with supporting my son, it is just what a mother does. The "Dancing Diva" award I won not because of my wonderful dancing so much as the encouragement I offered to other younger women among the stroke survivors to get up and dance. I enjoy it so much when I see the happiness on their faces when they realise what they are doing. It is worth giving up a thousand awards to see the real wonder on their faces. If what I do deserves an award then what so many others do should not go unnoticed and unrecognized. So many of you deserve an award for bravery in the face of what seems like insurmountable odds, you, the stroke survivors, struggle daily to put into action Improvements that means finding new pathways to send messages through a damaged brain. This is only achieved by hard work.You, the caregivers, struggle against tiredness, frustration and near defeat, to improve the life of the one you are caring for, partner, parent or child, to make a decent life for your family, to find a new way of making life worthwhile. Yes, my dears, you are all award winners too, even if that is never said to you by anyone else I am saying it to you now. So thank you all for being an inspiration to me, for telling your stories here in the Blog Community, for sharing your stories in posts on the Forums and for sharing with others in chat. You will never know what word you shared will have as an impact on another's life. I remember coming here in May 2005 knowing that I was losing the battle to overcome the deficits my husband was showing after stroke number four, no longer trusting the specialists, doctors and advisers who said "everything possible is being done" when I could see he was having more strokes than anyone else I knew while all the time being supposedly on the "right medication". Coming onto Strokenet saved my life and my sanity, finding marvelous people who shared their story, their advice and their empathy, who reassured me, who guided me, who helped me on my stumbling way. I found a whole community of people from all walks of life, all the states of America and some from other countries who understood what I was going through and genuinely wanted to help. I was so fortunate to Google stroke support and find this site! What a marvelous lot of people, not just back then but in all the years that followed, came into my life. So thank you Steve Mallory, thank you support people, thank you to all who maintain the site for all the help you have given to me and so many thousands of people, not just those who register but a great number who just read the information available on the site as a guest. No-one knows how many marriages have been saved and families held together by the kind words of a stranger. And to me none of you are strangers. I might never meet you (though I have met Babz (Barbara King) and Ann Rogers in person) but some tiny part of my heart is yours, you earned it by your comments on my blogs, your replies to my posts or your company in the chat room back when I did general chat and these days in the caregiver chat room. So there is only one thing to say: :You-Rock: and you should get a special award.

As a person who has to be her own advocate you are doing good. Yes it is not home and you will grieve that for a long time but seems to me you are handling things as best you can and yes, they do seem lazy to me too. If they are billing for services they are not providing that is fraud so who can you go to ( or a family member go to) about that?

Yes, chatting to strangers is one of the joys of my life too.

I hated at the nursing home Ray was in that the "party" was over so quickly, especially the women seemed to feel it, for the men the food was gone the party was over. Yes, there has to be different levels of eating but the staff should know who can have whole foods and who cannot, bad planning really if you get meatloaf and you can eat chicken wings. I am glad you have settled into a routine, it must be hard for you to make the transition I know it would be for me if I had to do the same.

Pam it is hard to get a balance on a new insulin. Maybe have a little more fruit with your breakfast if you can. Low sugar can certainly give you episodes that are much like anxiety attacks. My husband Ray suffered from those occasionally, usually when he had not eaten much due to tummy upsets. I am afraid I was a bit tough on him sometimes and just told him to eat something and he soon got back to balance again.

Mitch, nice to have you blogging here. I used to be on the Stroke Foundation site, didn't realise it had closed so i am glad you found this site instead. I have been gardening too, after six weeks away in England I came back to a real wilderness so I am into it again. The hydrangeas seem like a nice idea, I might look around the nurseries locally for some.

Nancy we all fail in some ways, whether it is raising our voice in frustration or just failing to keep up with housework, bill paying, social engagements etc which was the hardest thing for me sometimes. Our personalities do change, it is a response to what is going on around us. As the voice from the other side of caregiving, for me at least, I didn't go back to being the Sue I once was but slowly a new me is emerging, older and wiser and perhaps a fraction more cynical. We all get there in our own time. Some of us rush, some of us take it slow, depends on our personality and our circumstance.And i think you did the best you could under the circumstances I want to stress that there is no panel of four looking to give us 10 out of 10 o 3 out of ten come to that. We all struggle to keep our values and our temper. And as for being a mother, grandmother etc just do your best, that is all you can do.

Yes indeed, the world is full fo amazing people and it is wonderful that they come in and out of our lives to give us a confidence boost and reinforce the connection. All volunteers are angels and I hope the staff of the hospital recognizes that in some way.

Hi Judy, thanks for posting a update. Most of what you said is what I would have said in the first couple of years. Why indeed do all of those chores suddenly become ours? Why do we feel as if "someone" should be there doing it in our place. Like you I took energy from my achievements, the first time I got the car repaired, when I put back up some of the fence that had fallen down, when I paid for my lawn to be mowed where before Ray had done it. I wonder if those closest to us realise the effort we put into just keeping up the fabric of the place? I hope you get some help from your family when you need it because often those closest to us do not realise the strain we are under. I loved having the grandkids but oh boy! I do remember how tired I was at the end of the day. Now mine are scattered and I hardly see them. Welcome back, stay around a while. Sue.

Thanks for he update George. You seem to be settling in okay. It an be good to go back or it can be sad. Either way it is good you visited, helps to see your new life in a different light.

Pam, don't know how you are managing, emotionally moving into somewhere suddenly like you have is like a death in the family, hard to get through, subject to lots of tears, feelings of drowning in sorrow etc. All we can do is be here to support you so keep up the blogs and we will keep you in our thoughts and prayers. (((hugs))) from Sue.

Sadly at the end of life, a long way from where you are right now, there can be just a bed and a chair. As a visitor to several nursing homes that is sometimes what I see but it is not all there is. A person can be bedbound and beautiful, with bright eyes, a nice smile, a wink that says that person you are seeing is still a person of intelligence and good humor. Seeing these things really impresses on me that life is about more than "stuff" it is about being the best person you can be wherever you are.

Julie it is true time flies when you are having fun. Sounds as if Larry is getting the help he needs from the shots and ROM exercises. You and your daughter always have fun so I am sure you are looking forward to her visit. The company of your son as well as any help he can give you will lighten your load too.

Katrina, seems like you have reached a good place in your life again. Keeping up with life as you are able to do when you are well and having a strong spiritual life as well can give you a real boost. Long may it last.

I just read Ann Rogers' blog. It was wonderful to meet up with Ann after the years of chatting to her here and on Facebook. As soon as we saw each other it was as if we had each found a sister, closer even than that relationship perhaps. We of the stroke community are all family because of the experiences we have shared in our journeys, we know it, Ann and I have proved it. We could have used a week of catching up but it was just a couple of days as I had other plans to follow but I am so glad we did it. Ann's son's wedding was a very special time too so I am glad I was there for that as well. All women love weddings, or most of us do and a wedding in England in a rural setting on a summer's day is one experience that is hard to beat. I had six weeks in England, spending a lot of it in the homes of cousins. I am not one for sightseeing and don't need to do something expensive, just being with people is my joy. When I visit I just do whatever the family is doing, going to school to watch their grandchildren at a sports day, going for a walk along a riverbank and trying to identify wild flowers ( I knew them all when I was seven) sitting under a tree with a picnic lunch and a cup of tea and talking, talking, talking. For me as a widow the talking is so important as I learn so much when sharing views, contrasting my life with theirs, looking at how the wisdom shared will fit in to my life the way I see it now. Of course the reflection comes later and I can see a few changes I can make without changing the integrity of my life. I was lucky as I went to one wedding and two wedding receptions as another cousin took me to the reception of one of their relatives, the young couple had got married overseas and gathered friends for a loud and noisy party afterwards, back in their home town. It was awkward for me (that Australian woman) to try and talk to someone about where their niece lived in Australia with a band playing loud African music and young people whooping and stomping as they danced. But ah! I was once like that too so I could smile indulgently. It is good to have happy memories and I have a few more to add to my collection now. One of the sadnesses of the visit was realising a much loved cousin now has dementia. He is the one with stories about my Dad as he is almost ten years older than me so remembers him before I was born. When people develop dementia it is sad as you realise all those precious memories will no longer be accessible to them and so will be lost forever. I could see his wife got annoyed when he "forgot" something she had asked him to do or came home without half the items on the shopping list so maybe she is in denial about what is happening to him. I hope when she does realise she will be able to put processes in place to make living easier for both of them. I did a little trip up to Scotland and back and one day in the Scottish Highlands it was 11 degrees Celsius and much colder in their summer's day than it was reported to be on the same wintry day in Sydney. Oh the winds blew and we all, dressed in our summer gear, went various shades of blue too. Everyone was happy to snap a picture and hurry back onto the bus. What a difference weather makes to a holiday. By contrast, the first week I was in England we had a day of 37 degrees Celsius, the hottest day they had had for decades. Mind you that was the day we should probably have gone swimming because although I packed a swim suit it never got wet. A holiday is also about the people that you meet, the cousins, the people at the wedding, the people on the bus tour. My room mate was a widow from New Zealand, we had both lost our husbands about the same time and had had a lot of experiences in common. We also have the same sense of humour so it was enjoyable getting to know her too. It is good to have someone to go around with for a while. We had lunch together most days, we didn't sit with the same people on the bus as the bus host put us together with other people so we would get to know the other singles on board of which there were seven including us, the rest being couples, the families with children or sisters travelling together. The driver was a patient man so didn't go off at us when we forgot the time or , like I did, waited at the wrong bus stop. We did taste test "haggis" and of course some Scotch Whiskey too. I am used to the soft wines of Australia so the full spirit taste of Scotch whiskey is not to my liking at all so the first and last taste of it. There were other tastes like ginger bread slices in Grassmere, the burial place of the poet Wentworth, and the local various cheeses none of which I could eat being lactose intolerant. And as on many tours we had English, particularly Tudor, history all around us, also Roman history in Bath and pre-history in some of the burial sites we saw. Our host was good at showing us sites steeped in history and we understood that on standing on one site we are dealing with all levels of history. England has preserved her historical sites well and gets better at it all the time. So I learned a lot of new things every day. But what I loved most was meeting Ann. Life is about what makes you strong and what makes me strong is the encouragement of others who say to me: "Go on, you can do it, I know you can." And that is what Ann has done for me for ten years and so have so many of you on this wonderful site. And so I give thanks, for all of my good friends and well-wishers and the joy of the new experiences of every day living.

Lenny, you are a great encourager, keep on with your blogs, I love the way you express what you feel will help others.

Ron, in every country it is the same, what is available and what you have access to are two different things. I once heard a health commentator talk about a new course available to caregivers, I rang the number and found out there were 30 places available, all in capital cities and some university students were doing it as a project. So also we need to be aware of the quality and quantity of anything we are going to try. Good luck with your research, anything you find useful post it on the forums as well as in your blog so that more people see it.

I knew some of the things about you from your blogs and Facebook. I knew we were both country girls, family orientated, loved the simple things like popcorn though I don't have mine with mints! My Mum's grandfathers family lived in the one English village for over four hundred years. I have lived in many place until I came back to my home 32 years ago, now i am a fixture. Thanks for writing 100 things about you.