swilkinson

Just once in a while Ray said "thank you". It always surprised me as mostly he took what I did for granted. It is nice when they come out with something philosophical rather than what they need right now. Bruce is returning to his old self in some ways and that is a good thing and something to look forward to more of. Happy days ahead.

I need to shape up. I have slumped down for too long feeling sorry for myself. I need to get out more, not to the usual haunts but maybe to different places, places I would once have gone for rest and relaxation before being confined to the house with Ray's illness. A friend told me that in a stern voice yesterday, my fault as I had asked for her advice. When you ask for advice you do lay yourself open for others to take a bit out of you. This friend is honest in the extreme, which is why I value her opinion. She just tells it as she sees it. And boy that smarts sometimes. But she is also a widow so she does know my pain. It is hard being on your own, making decisions about your own future. That is why I want the kids to discuss things with me. But ultimately I know the decision-making is down to me. It is my life. I am only just emerging from what has seemed like a fog. It is hard to explain it to people who have not been through it. It is as if you see faces through a mist and hear people but cannot assimilate what they are saying. Sometimes it is like I have been in a dark room for a long time and when I go outside the light is too bright, the voices too loud. I know others probably see me as "normal", they hear me laugh as say they are glad I am "coming out of it now". As if I have been ill or unconscious for a while. I am assured by others that they know what I am going through. Do they heck! We are all individuals and we all grieve in our own way, we all feel our own pain, we all tread a similar path but do it in our own time. I am missing the time spent with the grief caounsellor as she saw life in a text book plus shared experience kind of way. She did not know exactly what I was going through but did know what people at my stage of grief generally went through. I stopped at six sessions as I didn't want to be someone who was constantly in therapy. There is a bit of pride in that I guess, I want to be independent. I went to the Stoke Recovery group meeting on Saturday, there was no guest speaker so the co-ordinator asked if we could help her to flesh out a presentation she is making to a national conference. She asked questions and the group answered. On the whole we agreed that person-centred care is often in name only, consulting the caregiver often doesn't happen and the information flow is not as good as it could be. There were horror stories, mainly about buzzers out of reach and patients left in their own...well you get the picture. I did mention the wall that goes up when the word "Dementia" enters the notes. I had too many occassions when some staff member said: "we would have given Ray such and such treatment, only he has dementia". If that happened I always emphasised that although Ray had dementia I didn't so as long as I knew what to do with him, I could repeat the exercises at home. Sometimes that worked sometimes it didn't. Some staff just seemed to want to write him off. We do have a tendency to write off dementia patients here and if stroke is the dominant feature why is that not treated? After all a body is just a body, if the person without dementia needs to do certain things in order to get well so does the person with dementia. When she asked if there was any after care problems I would have liked to have mentioned the lack of grief counselling but I didn't want to introduce a topic a lot of them are not ready for yet. The saying about not jumping the gate until you reach it came to mind. I don't think caregivers put their heads in the sand but they deal with so much trauma day to day they don't want to think too far ahead. I know I was like that, today and tomorrow were always more than enough for me and next week was just written in the diary so I wouldn't forget where I was supposed to take Ray. How does a past middle aged woman reorientate herself to a new life? I have had some helpful suggestions from other widows. Travel is seen as a panacea, or new hobbies, joining the gym, reconnecting with old friends, going to see more distant family etc. I think it depends a lot which generation you are in. I am going to do some travelling, one overseas trip, then some little trips to catch up with old friends. I don't know at this stage whether Ray's brothers and sisters want to keep in touch, no-one has said they'd like me to visit or that they would be visiting me. Maybe they don't know how to change the relationship either and that is another thing I will have to take slowly. How long do your friends need to adjust to the fact that you are on your own now? So I will visit those who have extended an invitation. I guess this is another time when you accept the friendships offered rather than grieving friendships lost, or maybe you do both.As with all things it is hasten slowly.

Debbie, nothing is perfect but sometimes you can find something close to perfect. Two bedrooms is my aim even now, with growing grandchildren I wouls need the assurance that I could still have visitors sleep over. Carl's set-up sounds well thought out. Keep on getting Bruce out as much as you can. Maybe you can try a sleepover in somewhere similar? See how it fits you both? Sue.

Debbie, my journey with my Mum's illness was very different from yours but like you I would have taken her everywhere she wanted to go. Mums...irreplacable.

Joni, my prayers are with you, your Mom and your brother and his family. This must be so harrowing for all of you. I too wish your brother a peaceful passing and comfort for you all as you await the end. (((hugs)))

Leah it is good you had the family gettogether. I know it is harder now to do that with your constant fatigue issues but you managed and you all look so good in the photos. I can imagine all the fun and laughter you enjoyed being with the ones you love. Well done.

Cindy and Sandy, Shirley devoted a lot of time to Ray and I in the years prior to his death so I am not going to put up a reminder to her now that she has a duty to me etc. Hopefully we have many good years ahead when the talking can be done. It is my fault for getting the timing wrong. Forgive my foolishness in even thinking she should put herself out for me, it is the mother's place to give the daughter her freedom to be whoever it is she needs to be. And right now she needs to put others first. It is the same attiude I taught her was right for me...so like mother, like daughter.

Sandy, I did tell her both times I needed to sit down and discuss some things with her but her "job" is people in crisis and her prioritiy is to do the job. Maybe I just need to wait until she is ready, whenever that will be.

Debbie, sounds like a dream but one that could become a reality. You need those happy plans for the future. If today is bad , you can say, there is always tomorrow.

I went to visit my daughter and family for a few days. It was a good visit as the sun was shining for a change. I had a hard trip down as I had to stand on the train for the first 90 minutes and got a bad cramp in my left calf, ouchy! But the rest of the trip was good. I almost didn't go as looking after the other grandkids had me feeling very tired but talking to Debbie (Ethyl17) she reminded me how much I love to go visit my daughter and yes, it is always worth going down there. I had hoped for some time alone with Shirley but that never happened. I know she is busy with all the work she does as a Salvation Army officer but there are things I wanted to say to her that I didn't want her kids to hear or her husband to comment on, just family matters, but she was either working or the family were there. As usual she had a funeral to do, a big one this time as the loved one was one of that last generation of old soldiers from WW2. He was also a sports-mad father and all his long life had been involved in a lot of community organisations and many were there to farewell a good friend. Although Shirley and I talk on the phone that is not the way to discuss deeper issues. What is on my mind is now about moving and rehousing myself. At the moment I have room for them to come and stay and if I go into housing more suitable to my needs as a widow that will not be so. At present the littlest grandchildren get a lot of fun doing outdoor activities, especially the little boys so I value having a big backyard but as it also goes with an older house that needs a lot of maintaining that is a bit of a problem. I know in a few years time the boys will not need the space to run around in but for now they do so a villa with a patch of lawn is probably not the best accommodation for me. I also need probably to put my end-of-life wishes on paper as she is my guardian, maybe that is the talk she is not ready to have yet? Having lost one parent I guess she doesn't really want to think about losing another? I know it is early days as we only lost Ray last September but I need to have it settled in my own mind too. I just have to hope the time will come soon when she is ready to have such a discussion. I do wonder if you have to change the way you approach family matters as a widow? Once the families would come fairly often to see Ray and I because of the thought I suppose that he would not be with us forever but now it is just me it doesn't seem like an issue. I know that is how we felt when Ray's Step-Dad died after a long fight with cancer. Little did we know that we would lose his Mum to a heart attack eleven months later. In a sense we are all living on borrowed time and for that reason should not put off visiting family and friends. Even if that means listening to their problems and getting involved in the solutions. We owe those who nurtured us for our survival and need to remember that. Had a bit of a laugh this morning when I was talking to Trev on the phone and he told me he had dropped in some papers at 11.30pm last night, using his key to open the back door. He said all he could hear was me snoring, so at least a burglar would know where I was sleeping and be able to avoid that room! Well I was tired from the trip home but honestly I never heard him come in. Today was Shirley's daughter Naomi's birthday, she turned 9. While I was down on the visit I got her one of the popular bracelets with large ornate beads on it. Of course not the famous jewelled ones but a cheap imitation. She is starting to get interested in jewellery so was pleased with it. The bracelets became part of the market stall I looked after at the Market Day they have in their hall every two months. A Market Day is a good way of getting the community interested in what you are all about as an organisation so they use it for PR as well as as a fundraiser. I can still sell just about anything so those years in Tuppwerware fitted me out with valuable skills I still use. Now I am home I need to chase up the old tradesman who was to put a new screen door on the back door for me and find out when that is going to happen. It seems as if the maintenance is never ending here but I think that is the same for all owners of older houses. When we were young we took it for granted that some weekends had to be set aside for house maintenance and those jobs like digging over the garden and making constructive changes to the backyard. Now it is just me that seems a good deal harder but eventually I will settle to doing the jobs I am capable of doing and getting tradesmen in to do the rest. I guess that is a part of the acceptance journey. And so life goes on for me. I am hoping there will be signs I am getting stronger and more able to cope. I accept good and bad days will still happen and I will have to find a way to cope with that. I just want to find it easier to surf the waves of grief that are a part of my life now and find a new balance.

I've just had the grandchildren who I usually mind for three days, two nights. It was lovely during the day but when the little ones get tired it is tough getting them into bed. It didn't help that the bricklayers are still on the job next door and the site manager was on my driveway at 6.20am yesterday morning making phone calls. No consideration for the fact this is a residential area not a new subdivision. I love my grandkids and I really try to make their time here enjoyable. On Monday it was a trip to the lagoon south of here, soft sand, lots of sand castle building, making sand angels etc. A picnic lunch hastily slung together stopped our appettites in their tracks. Three hours in the middle of the day is generally enough. We came back home and for the rest of the day did circuits here, trampoline, swing and slippery dip out the back, wheeled toys and sandpit out on the front verandah and some activitiy like painting set out in the living area. There are also DVDs and videos and lots of toys to play with. I could set up my own preschool with the amount of toys I have here. Tuesday we went to the lakeshore ten minutes north of here to a big playground, lots of different sandpits, rocking machines etc in a fenced in area, with a lot of swings and climbing equipment outside of that area. The little ones really powered around the place and when I wanted to leave it was: "No, no, Granma no." So we went off and got some goodies for lunch and went back for another couple of hours. Probably too much because today they were so tired and worn out and I was too. Today it was Tori's twelth birthday and her mother picked up one of her girlfriends from school at her house and then came and picked up Tori for a girl's day out. The little boys started grumbling from then on. I took them to a park they had been asking to go to and they enjoyed it for a while. It has a flying fox, kid's size, which Oliver was very keen on and some kid's sized circuit training equipment which Alex thought was great. In the end Alex got into an argument with another child and started crying so home we came after being there for only a couple of hours. We had two really good days so I expect it was all a bit too much for the little boys. Thanks to the girls in chat for understanding about me having the kids here and letting me off after half an hour. Good to have so many chatting again and despite the spring silliness that sometimes arises I am sure our Host Sally is quite able to control them without a whip and a chair. It is good to know that I am not fully responsible now. It has been a longer term volunteer role than I expected it to be when I started in 2006. It has been very rewarding though and good to know that cyberfriends from Strokenet generally and caregiver chat in particular have always been there to support me when I needed it. I have had a few things go wrong lately. I try to do my best to feel in control and make some sensible decisions but deep down I just don't want to do it. I certainly don't want to think too far ahead. I don't want life to be like this. It is hard not to have another person to bounce ideas off, to help make decisions. It makes me feel so sad and alone. I felt that way when I switched the hotplates on tonight. One went ** snap** and didn't light up. Yet another thing to do. I only just replaced the refrigerator. It seems as if everything around me is breaking down. Before I felt as if everything was at least a joint decision. Now it is just me to take the blame if I get it wrong. I understand missing Ray and that feeling of doing it all on my own. I didn't think I would feel so vulnerable and unsure for so long. I spoke to my daughter on the phone tonight. I would have liked to go down to her place for a few days, the weekend at least but she has her Market Day again Saturday and will be very busy so I wouldn't see much of her. And I honestly don't think I want to take the five hour journey each way down and back in four days. It is lovely to spent time with them, especially the two grandchildren. But it is hard that they live so far away. I hoped and prayed before Ray died that they would move closer but that didn't happen. I wonder if it will happen with their next move or if that will take them even further away? And so I am tired out tonight. Not only tired but a little stressed out with the unaccustomed activity and that cleaning before and cleaning up after feeling. Plenty of laundry to do tomorrow and then I am thinking I'll take it easy for a few days.

Once a person has had a stroke everything gets more complicated. The brain doesn't respond the same way to drugs for instance. So the docs precscribe the same as they would for a person without brain damage and are amazed when our loved one reacts differently. I hope he soon gets back to what passes for normal. And you get some respite from the worry. Sue.

i was just thinking the same Joni. You are a good daughter and a great sister. I know what it is like to have two people to visit in two different nursing homes and it runs you ragged. But you go on because you love them both and don't want to have regrets when the fight is over. You are adviocating for your Mum and that is all you can do, the doctors see so many elderly patients I guess we all sort of merge into one image in the end. I just hope that if it is serious they take action. Sue.

George you are so right, I would not want Ray back to go on suffering. I just feel as if half of me died with him. I am trying to put a bandage over what some days seems like a gaping wound and other days is manageable. It is hard to go on alone after 44 years. I some days just do not know how I will get through the day. Ray always had my back, we did not agree on everything but in the end it was always him and me against the world and that is what I so miss. I am also glad for the friends I have here and the few I have left in the real world. I hope some of my old friends will eventually come back or I will stop needing them. Life goes on, my faith keeps me going and as you say I have to live what I preach. Sue.

Great to hear things went well. You take it easy if you can, there will be plenty of work when he gets home. Time spent playing with a puppy is never wasted. Sue.

George, you are like me, you get stuck into a job and don't think of the consequences. I am glad the neighbour came along and helped you out. Take some time out and hope by Mondy there is a thaw or at least no more snow. Sue.

Asha, you are so like me. You don't just think about something you put it into a blog so you can look at it and see if it makes sense. Good luck with finding the pace of the your life's flow again. I keep having to do that, adjust my pace to the pace of life and not keep trying to run on ahead. Plan some fun for summer and your mood with improve. Sue.

When I have my two grandsons here aged five and six I set up a circuit, so I have the trampoline, swing and slippery dip out the back, the sandpit and wheeled toys on the front verandah and the painting set and plenty of paper in the living area. We do each activity for twenty minutes. Then I put th paints away and get out the cars and the mat they go on. Then we play ball outside. If they start to get bored we go for a walk. It keeps them busy and tires me out. Does Cayden like horses or farm animals, is there somewhere you can sit and watch them? Can you drive to where there are wetland birds? I like to take my grandsons for a walk along the Lake about ten minutes drive from here, I can fill in an hour there or two if I take a picnic lunch. I do insist they sit still for lunch so that allows me to rest too. Maybe you can design a special project for something like summer school, like an environmental project on where you live? Draw a large map and fill it in as you do activities like a visit to the firestation? It is all work for you of course but if it keeps him happy too it would be worth it. Sue.

I've had a few blue days. I hate the wind howling around the house and the rain smashing against the windows when I am alone. Just a couple of days of that and I can feel blue. I can tell now that winter with it's short grey days is coming and do not look forward to that with joy. But I have warm clothes and a roof over my head, enough food in the freezer so I don't have to shop in the bad weather and no-one but me to worry about so I should feel happy with that. My daughter and family were coming this week for a few days but somehow our wires got crossed and now they are not. I love to have them here but as a spur of the moment decision it was really bad timing. I get the three little ones again for three days from tomorrow and would have been pushed to find room for all anyway. I love visitors but not all at once. I was also thinking about going down to them just for a few days but something else has come up, a funeral to go to, a market day to help with, little things that fill my life. I had my preaching day today. It is all three services so 8am, 9.30am and 6pm. Not large attendences as our churchyard is a mess, the old hall having been pulled down last week so a lot of the older folk didn't come for fear there wouldn't be parking for them. I am happier when the church isn't full and feel more confident when I am preaching to people I know so it was fine. I always think I write things I need to confirm in my mind so for me a sermon is much like a blog and as I preached on widows which struck a note with those who were also widows and we all learned together. We widows can still be of service to our community and find plenty to keep us busy. The first week of the school holidays was mostly fine but with much colder weather predicted for this week. There has been the first light snow on the Snowy Mountians and as the winds were blowing from that direction there was a distinct chill in the air. I know compared to the winters most of you have ours are laughable but our open plan houses are hard to heat and a chill in the air is a chill in the air wherever you are. So time for the dressing gowns and slippers to come out and the summer clothes to go away in favour of warmer clothes. Bah Humbug!!! I am learning to have regrets but not punish myself for the mistakes I make. I did communion in hospital for a lady who thinks of herself as an old friend of mine. I don't know if it was the painkillers she was on but she was quite strident and argumentative when I took the communion to her. I still went through the motions but was unhappy with what was happening. Maybe I need to check things out with the staff before I do that again. It is all a learning curve dealing with people and their personalities. When you deal with older folk in a hospital setting you have to take into account reaction to medication and the possibility of dementia clouding a mind as a part of the equation. Help! I need more training before I move forward! It looks like I will be going to a couple of funerals this coming week. One on Wednesday afternoon so I will do chat, give the two boys their lunch and then get dressed for the funeral so that I am ready when Pam comes back to get them. The 24th of April is Tori's birthday, she will be twelve so she and a girlfriend and Pam are going out for a special lunch while the boys stay here with me. Twelve already, oh my! She is already giving me a peck on the cheek instead of a hug so showing signs of moving into those teenage years with a year yet to go! Life moves forward but slowly. Not too many changes for me to cope with. I am trying to cultivate an attitude of gratitude, to be grateful for a letter in the post, an email in my inbox, a phone call from a friend. On the days when none of those happen I try to be glad of the solitude, that I am no longer wrung out by trying to meet someone else's care needs. But if it would bring my dear Ray back to me I would go through it all again for sure.

Debbie, I hate surprises and I haven't had a stroke. Mine is bases on all the promises my mother made and broke. Her excuse often was that she had planned it to be a surprise and I spoilt it! Sounds like you had a good day even if it was a tiring one with the carpet and difficulty pushing the wheelchair, I guess there were other difficulties like with bathrooms too. But you did it, you and Bruce had a day out, enjoyed yourselves and. built up some new memories. Well done. Sue.

Welcome back Lydia, so glad you have re-appeared in the Blog Community. I really hate it when someone stops blogging, it is like a bright star going out. So you are back where you belong (((Hugs))). The working again is so good for you, financially independent, interested in life,and a promotion too.I am happy you are living in a space big enough for you and Monster and have a (maybe) boyfriend helping to keep your self-esteem high too. So very pleased for you. Sue.

Try this link: http://www.strokeboa...llery&album=679 there are two pages of photos so make sure you look at both.

Phew...I did want to say to a 67 year old stroke survivor who was driving alone to Texas and back: "are you sure this is a good idea???" but was too polite to do so. Yes, you do have to enjoy those good years ahead because there is no money back guarantee on them. And Lesley deserves to enjoy those good years too. Glad to hear you are being good and doing all the right things in her absence. I do hear those girls from New Zealand pack a fair wallop! Sue.

Lenny, I agree that this was so sad. Our News programs have been running it too. We were worried on caregiver chat about Bob (reegr), who is one of our caregivers and was supposed to be running the Marathon. Luckily he came on late into the chat and told us he was okay, he was still running when it happened. Sadly there is a lot of discontent in the world we live in and people do think that causing damage in that fashion will somehow get their voices heard. I wish we lived in a more peaceful society but we don't. Bless you for thinking of others at this sad time. Sue.

Congratulations Cindy and Mike, wishing you a long and HAPPIEST EVER life together.