swilkinson

Trevor, Edie, Alice, Lucas and I had dinner out tonight. Trevor wanted it to be this weekend we celebrated my birthday as next weekend will be Alice's First Birthday Party and he didn't want me to feel neglected. They even bought me a glass of champagne, not a good idea as I am one of those people who glow like a neon light but I did appreciate the thought and the effort they put into it. A good time was had by all, we all have different tastes in food and I was pleased Lucas now loves sushi as that is much better for him than the pizza which used to be his favourite. Alice is so darned cute. She was amusing everyone at nearby tables with her baby peek-a-boo games.Several other diners came over to say goodnight to her. It seems she is one of the baby group fashionistas and was a big hit today at another first birthday party this afternoon to which she wore pink tights and a tu tu! I am glad Edie is sociable and takes her around to visit other Mums and Bubs on her days off. You need that company and support when you are a young Mum. Where we went tonight was at one of our nicer buffet restuarants locally and the food there is delicious. It amazed me how good the children were, Alice all smiles and Lucas too. He told me this year at school is his best year ever! For a boy who was a problem child two years ago he has certainly changed. I was pleased tonight when he snuggled up beside me in the car and had a chat, being accepted by children is a special privilege. I've also had a couple from our days long ago visit this week. John is Trev's godfather so was delighted to finally meet Miss Alice. It is good to see the happiness she is generating.They have always been part of our support group but have not had good health themselves the past couple of years so I was delighted when they decided to come for a visit. It is different hosting couples as a widow but it all worked out well. Happily we had a couple of fine sunny days so were able to get out and enjoy the beautiful sights of my part of the Central Coast. I do love having visitors. I suspect John missed having Ray to talk to as they were great mates. It is raining now and that is predicted to last for three days so time to put up my feet and read, crochet, knit and finally assemble some of those bags of squares into rugs. I won't mind a couple of quiet days as life has been quite hectic of late. It is part of life that it speeds up for a while and then slows down as the seasons change. I think winter is finally here, the temps are lower at night and although the days are sunny there is still a chill in the air. We can't complain as we have had some glorious autumn weather and we do need the rain. I have had a bit of a clean-up. It is time to pack up Ray's winter clothes and donate them to charity now. I hate to do it but there is no sense in hanging onto them when others could do with warm clothes for winter. I will probably keep a couple of things out of sentiment. Edie was telling me of a new charity that provides clothes for the homeless so maybe I will get in touch with them. It is not hard in adverse circumstances to find yourself homeless, there should be no stigma attached, we should just be grateful that life has somehow been kinder to us than it has to others who are less fortunate than ourselves. I went to a meeting at church today about home visiting and other pastoral issues. The co-ordinator said she has my name down on a list of guest speakers so looks like I will be busy when I get back from my holiday. I guess I need to keep busy but I also need to make sure that my busyness is invested in something worthwhile.

Dyan, we parents give up a lot for our kids and that is the way it should be. Enjoy your summer at your place, take some breaks when Caybden is happy and busy and doesn't need your close attention. I hope you get that visit to family in soon. Sue.

Julie, I know the frustrations of being technically challenged. If anything electronic of mine doesn't work I holler: "Trevor!" and hope that works. Warranties are not really worth the paper they are printed on. I hope you get some sunny days and are able to enjoy the Great Outdoors. Sue.

Wow Debbie, thank you so much for your upbeat update, I was wondering if you did get to do the meet-up knowing that a lot had gone on before. And for Nancy, you and Colleen it was all so positive. What a fantastic treat to meet people you know here and now know in real, face-to-face life! Viva Strokenet!. The gambling would leave me bored but buffet food I do understand. The misadventures of Bruce and the scooter will seem funny when you look back on it even if it was horrifying at the time. I know that "wanting to be in control and wanting our guys to perform well" feeling. But it is what it is. I hope this is the start of some beautiful friendships.

Lenny, thank you once again for the reminders. It is true the docotrs can tell us what happened, they can discuss the reasons behind it but they cannot predict our future or foretell our future happiness. We should do our best to prove them wrong!

Good advice from Debbie. Now from me, simple things, like get enough time out in the sun, expose some skin, get some vitaimin D naturally. Take Lauren out in the sun too, it will energise him and reconnect him to the natural world. Early mornings and late afternoons so you can see and hear birds and whatever can be heard above the more human landscape noises, traffic etc. Get some serious planning in, plan some work, plan some breaks, plan some FUN!!! I know what it is like for the long haul and I know for some people that is all there is of life. I experienced some of the group members of our dementia group dying before their loved ones so that was a wake-up call for me. This life is all we have so we have to make the most of it. I know it is hard to be a caregiver and live a fulfilling life but you need to break it down into steps. A picnic in the yard is the first step, a picnic in the park is the next step, a picnic by water (lake, river, sea) is the next step. Then a couple of hours out, half a day out, a full day out. It is easier to be home but it is better to experience life as you found with your girlfriend's visit. As soon as you can, get out of the house for a while. While you are in the house you are looking at all the work that needs to be done, when you are out in the sun you look at the sky, the trees, the flowers. As we say here "every day above the grass is a good day". (((hugs))) from Sue.

I'm still here. I am in Australia, north of Sydney. I looked after my dear husband Ray for 13 years, he had multiple strokes and so many other illnesses and disabilities including dementia in the last six years of his life. He died in September 2012 so I am a widow now but still Chat Host and Blog Moderator so still involved in Strokenet. Sue.

What did the strokes take away that I miss most - Ray..

Fred, your blogs always seem like talking to a friend when you range from one subject to another - there is no harm in that. I am gad you have a reliable person to fix your car at considerably less than the dealers want for the same thing. On a budget those extra dollars in your pocket count. I used to have a poem called "The Consecrated Car" about a nman who used his car to take folk to church, I guess you have a consecrated car too. Sue.

Lenny, I am sure a lot of people on Strokenet are praying for the families associated with the tornado in Moore, Oklahoma and the surrounds but thank you for reminding us.

George you and Lesley have done well, that was a big trip in a short space of time. I hope you do use your camper to the full and get a lot of enjoyment out of it. Now in my retirement, I so miss that dream of being on the road on my way around our beautiful country with Ray at my side. I am farewelling so many of my friends who are just starting out on the road travelling north now that winter is approaching. Be patient with your recovery. I know it is hard to sit when you are usually so active but that time will come again.

Enjoy the g--d days while they last. You deserve for it all to plateau and allow you some breathing space. You work so hard on Dan's behalf Nancy and we appreciate what you do even if Dan does not/ cannot recognise the effort or express his thanks. (((hugs))). Sue.

Fred, I have to weed my lawn in Spring, I get a lot of broadleaf weeeds and they spoil a lawn. Ray used to sit down and do the job in one Spring afternoon. I am afraid I am not the lawn person he was and things will never look that neat again.

Today is the sixth month since Mum died, yesterday was the eighth month since Ray died, anniversaries of sadness, painful times still to come. No, I am not stuck in the one place it is more like a rollercoaster than ever, Sometimes I am at the top and can see the view ahead, sometimes I am at the bottom and all I can see is the hill ahead I have to climb. But I am getting stronger so climbing is not the problem it was initially. One new thing is that I am getting more and more comfortable in my own home. That has certainly been a long time coming. For a while I had to keep jumping in the car and going out to the shopping centre where there were bright lights and people and noise, not just the sound of my own breathing. That seems to have calmed down now. I still have restless days when I paced up and down or keep getting up in the night as if there is something else I have to do. I think these are mild anxiety attacks. From talking to other widows it seems those are quite common in the first year. I had a bad day on Wednesday, I was fine till chat was over but had the grumbly tummy and the headache and the general unwellness that we all expereince. I think it is then that I feel so ALONE. I know that is how it is, I am here, I am sick, no-one else knows and that is the way it is. I could ring one of my kids but I am leaving that for a real emergency, not just a grumbly tummy so I sat down and cried it all out. "Poor me" etc. But even then in a way I felt I could ride it out. I am stronger than I was. The dreams of summer are fading now, some trees have dropped their leaves and there is raking and disposing to do. I have loosened the soil in some of the potplants and am praying that we don't get a frost through winter, it is not so unknown here in a real bad winter. There is snow on the Snowy Mountains and Australian Alps so the skiing enthusiasts are gearing up for a good season. It is a great tourist industry for that area and so it is a good thing. The problem is the winds that blow from the south and have us all reaching for our warmer clothes. I had Trev call in this morning and I asked him to dispose of a couple of things for me, to check the gas bottles, to look in the garage when he has time and see what we can dispose of in there. He listed all the jobs he has to do, the soccer he takes Lucas to, the wedding of a girlfriend of Edie's that they are attending next weekend, the plans for Alice's first birthday that Edie needs help with now she is back working 15 hours a week. I know, "they have a life of their own"...sigh. I think I will pin a list on the whiteboard of things I would like him to do and see if he can do some of them when he has a spare hour or two. That might work. The crashing and banging next door today is the scaffolding coming down. The new house is almost to lock-up stage now. I am hopeful that the fit-out will be less noisy as it is inside, muffled by walls. The house is painted on the outside so the scaffolding can go, all else will be done with ladders. It has been a very noisy few months and I think that has been adding to my stress levels. I think from now on I should be able to take it more in my stride as it will seem more like a normal home being renovated. I think the chaos next door has been another factor in the "everything seems to be changing " aspect of my life. I am so grateful for the "lunch bunch" ladies as going to lunch after church has become one of the ways Sundays has become a happy time again. It is nice to think I will go to church and then out to lunch and only have the rest of the afternoon to fill in. At first it seemed like an indulgence, now it seems just an enjoyable part of my routine. I have always said: "I get by with a little help from my friends" and that is certainly true of this part of my life as well. I wonder how much of what is put down as depression is just extreme loneliness? I read all the time on a widows' site of the loneliness of widows. I think we feel that as survivors and caregivers too so it is not a new sensation. I was so busy looking after the welfare of Ray and Mum even when I was no longer a hands-on caregiver so it was not until they were both gone that the impact of time on my hands and loneliness in my life actually registered. Up till Mum's death I still felt like a caregiver, was still focussed on those caregtiver issues, was still involved in the world of medical solutions and care issues. That is no longer the case. Now some of that is fading from my mind I feel an emptiness that is hard to explain. Last night I was feeling useless, wondering what the purpose of my life is now, what I am supposed to do. Those feelings come and go. My life does not have a purpose...me who was dedicated to the purpose driven life. But does it have to be? Maybe I need to go to a Buddhist retreat like a girlfriend of mine has just done and learn how to live a life whose purpose is closer to heaven than to earth. Maybe I need to reset my conscience so that I do not feel lazy if I am not busy, busy, busy all the time. I am not sure how I will go about that but will try to make it one of the thoughts I work on when I am on holiday in July. For now I need to go on sorting through my "stuff" getting the house into some kind of order that is relevant to me. I have heard that decluttering help you to be less anxious. But just maybe I need to stop relying on busyness to fill my days and simply let living and breathing for a while be enough.

Thanks Orlando for taking us with you on the walk around your neighbourhood. You are doing so well now. Those shade trees would be a big asset in summer. I just loved the way your helper coached you as you went around. Good to see you on posting again. Sue.

Oh Dyan, hope you find out what is causing the breathing problem and get to have your lovely holiday down in Florida. Cayden is just at an age to worry so I hope the problem he has sleeping eases too for your own peace of mind. Kids are just so interested in life and the "why" questions never cease. With my six year old grandson Alex I have to be real careful with my answers when he is around as his parents have differing views to my own. Tell Cayden he is precious to God and God loves him as you do. Best of luck with your daughter going through the teenage years, I well remember those days with my own three. Loving them is all we can do.

Mary Jo, I don't know how this will resolve. Is this change in personality permanent? Is it due to medication changes? How do the medical team see the alterations to his personality and do they hope to find a fix? Because without a fix you certainly will not be taking him home with you. No-one can put up for long with the abuse, the threats, the lack of co-operation and the radical change in personality. In our so called advanced society it is hard to admit that science cannot fix parts of the brain that no longer have social skills, that now does not recognise a loved one, that will never give the thanks for the tender loving care and the sacrifice that looking after a long term invalid demands. When do we say "they can't help it" and when do we say"the medical fraternity has no answer to this problem"? My heart breaks for you. I saw this occassionally in Ray, the mean, hurtful person who struck out at the one he loved (me) but usually it was an urinary tract infection, chest infection, something that was putting him into an altered state. And mostly antibiotics were the answer. On the wishing to die issue, I often think their wishes should be granted but our society is not ready to handle the implications of that yet.

Wow, that was an about turn. I think I need to teach you a saying that I found handy: "We have a plan honey, we have to stick to the plan." Ray would sometimes do the same thing so I used to phrase to keep our budget on track. But if you are happy with the car...and you can afford the gas...go for it.

I'm glad it all went well Nancy. The day at the little zoo sounds nice, just a break and a memory made. You seem to deal better with Dan now, I hope that continues.

You and Lesley are a great team George. Enjoy your trip.

I have been trying to give time to my family when they ask for it but while still maintaining some independence. It is always a balancing act, isn't it? There is so much busyness in all our lives. When I was a full-time caregiver I gave very little time and thought to the family, now my time is my own I can spare them the time but don't want to get too embroiled in their lifes. I don't want to become the interferring mother-in-law, the type who's phone calls have to be screened out or ignored untill you have the time to deal with them. Sometimes I feel lonely, as you know, as I have expressed that here before. Sometimes I am busy and time flies. I have a kind of routine now, it is not set in stone and I have not got any committments I cannot drop if I have to. I am paranoid about getting into a position where I HAVE to do anything on a permanent basis. Of course I try to be on here for my chat, do a weekly Blog Report etc. At church I try to make sure if my name is on one of the rosters I am there and do carry out my obligations. But none of that is a life or death committment like looking after Ray physically or emotionally was. With Mum's death the rest of my obligations peeled away. I so miss her and mourn for her especially last week with the lead-up to Mother's Day on Sunday. All the "firsts" are difficult so Mother's Day became something I dreaded. But it all went okay. My daughter rang me before church to wish me a Happy Mother's Day and Trevor rang me to ask me what was a suitable time for them to bring over meat and salad vegetables for a BBQed dinner. We settled on 5.30pm so I could still go to Messy Church in the afternoon. That worked out well, though walking out on the dinner of oven baked savoury potatoes the Messy Church participants were having was hard. I did so with some reluctance. So on Sunday I served at church, went out with the lunch bunch ladies for a quick lunch then came home for an hour before going to Messy Church, then home to set up for Trev to BBQ. They arrived almost an hour late but that was understandable with their other Mother needing some attention plus getting in a sleep for Alice and a calm-down period for Lucas. It was a pleasant clear evening, Trevor cooked us a nice meal and the company was good. Alice was clowning around and making us laugh. Trev bought me potting mix and organic fertilizer ( it is a byproduct of cows...lol) as that is our standard present so in Spring I will be able to pot up all the plants once more. My other son didn't visit. My DIL rang up but as she didn't have the children she arranged that she and they would come over Monday after school and give me a special afternoon tea which they did. Of course Pamela still misses her own mother who died twelve years ago. I guess it is just something we do for the rest of our lives. The gifts the grandchildren had chosen were nice too, they don't have much money but had put some thought into what they would buy. We watched as they played outside, came inside and watched one of the Singlaong videos and had a scrumptious and far too sugary afternoon tea, but as it was in good company who cares? I have been asked to get more involved in church happenings but said I would leave making decisions on getting more involved until I come back from my planned holiday to England (more details of that later) and so that has bought me a breathing space. I know everyone has extra jobs lined up for me if I want them but do I want to be tied down again? Not in the foreseeable future. I love to volunteer but now it has to be out of choice not out of duty or obligation. I have all that time of being tied down behind me now. Do I want to be busy and for my life to be fulfilled? Yes, of course I do. I just do not know how that will happen as yet. I am hoping that life will adjust so that the way forward is obvious. Does it ever happen that way? I have a busy week ahead of me, three things to do tomorrow, pick up oldies for the Friendship morning tea, pop in to see a girfriend who I had promised to have lunch with but can't now as I have to go to another Lions Club member's funeral at 1.30pm. This is the second one in two months. I am hoping there are no more this year. On your Tuesday evening, my Wednesday morning it is chat time and then I hope to do some gardening for the rest of the day weather permitting. I was too busy over the weekend to do any gardening or tidying up. I usually do the odd jobs like gardening on Saturdays but this Saturday was Edie's birthday so I had lunch over at Trev and Edie's. It was not a formal lunch as they were going out to a very exclusive restuarant for a very expensive dinner that evening so it was salad sandwiches for lunch but I enjoyed being with them anyway. As usual, life goes on.

Glad it all went well George. I know you are keen to get started but do the recuperation as the doctor said, he has the history of those who did and those who didn't and what went wrong! Welcome home Lesley...glad you are back keeping George in line again. Hope you are up to the trip and Lesly up to doing all the driving. Sue.

Prayers from me too, for peace and acceptance. I cannot imagine losing an adult child, it must be completely heartbreaking. And one you have been full-time caregiver for even more so. Your brother and SIL will need a lot of family support and I know you will be able to give them that. (((hugs))) from Sue.

Welcome to Airi and congratulations to great grand pa and great (whatever your wife likes to be called) I am Granma or GrannySue and my Mum was called "Little Granma", Ray was Pa Ray and my Dad was "Patty" being Patrick and of Irish descent I guess that should have been Paddy. I agree with Nancy, people make mistakes, the problem is that some don't learn from them. I have friends with sons and daughter serving time too and pray fervently for them and for my three to stay out of trouble. So far, so good. Fred, you have done well and as a committed man of Faith will continue to do so. Sue.

George it does help me to be here. Writing blogs has always been part of sorting out my life so blogging here where people have seen the strugglle Ray and I went through is like connecting with old friends. I stay with the Stroke Recovery group for the same reason. There will be a time for me to move on, I know that and hopefully I will recognise it when it comes.