swilkinson

I know it says "Live the life you love" but sometimes you've also got to "Love the life you live". It is frightening that a survivor can go on to have seizures, TIAs and other medical conditions detremental to their health and well-being. It seems extra unfair after putting up with so much and fighting their way back to something resembling normal. But it does happens. So you did the right thing, you "played hookie" and enjoyed the day as much as you were able. Hang in there, life will always come right side up again. Lovely to talk to you this evening. Hope you slept well. Sue.

Find someone with experience, patience and compassion. A person who claims to be a professional and says the things she said ought to go back and retrain as something else. Of course she probably graduated from the same school as the doctors who say :"No you didn't have a stroke" and then it shows up on the MRI. Keep working on the exercises and see someone else in two weeks time. Sue. :friends:

Start with those you come across every day, talking about your own experiences. If you can hook up with someone with recognisable physical deficits too so people can see the range of deficits that you can still survive with and live a reasonable life. Because Ray has had a series of strokes over 15 years our friends also know it is a long term survival situation. NOT he stroked, he died. BUT he stroked and battled back to live a life. People need to know that what you did took courage and a lot of support. As a carer I need our friends to see stroke survival as worthy of support. Sue.

Ray came onto chat this afternoon( Wednesday night New York time) Thursday noon onwards here. I did some of the typing though he used the shift key and some of the time it was what I was thinking that went into the replies and sometimes he had some imput. I don't know whether it is possible for others to work out which one of us is talking, eh Gary? But anyway we stayed on for about an hour and communicated to the few who came in and out. Of course if you were watching the Grammies instead of coming to chat what can I say? WHERE WERE YOU???? Just thanks to all those who were there. I think Ray finds line by line thinking, which is what he uses when he is reading his Readers Digests doesn't work on chat. So if anyone has any clues that will help him decide what to say when he has three lines to read and the subject changes just help me out here. I have decided that Thursday will be the van's day off, that means that I will not take it anywhere, basically we will stay home and do what needs to be done here. Since our doctor ordered that we go somewhere every day as a antidote to Ray becoming depressed we have been somewhere most days even if it is just down to get vegetables at the fruit and vegetable stall about half mile down the road. So it is good for the van to have its own day off. Our son is away for two days a week now as he is minder for Tori Wednesday afternoons and also sees her home from school on Thursdays. This gives us a couple of nights a week when he is not here ( he sometimes stays with friends on Saturday nights) and I could easily get used to walking from the bathroom to the bedroom naked. It is not something I think about all the time but it is something that feels as if I don't have to worry what someone else thinks of me or wants me to do all the time, a kind of personal freedom thing for mothers who have retired from mothering. While I was out yesterday I had a phone call from the 'social worker' who is ONE DAY going to get me some respite care. Again I have tried all day to contact her, but as usual she either isn't in or has decided to put me into the too hard basket again. Delay, delay, delay is the name of the game we play. After we had been on chat for just over an hour Ray said he had had enough. He finds in it hard as I said to scan the feed line by line and work out what each person is saying and if that applies to him. I know it will be easier as he gets more practice. As we got up to set the table etc for lunch he actually called me "love", something he hasn't done for long time. So maybe the closeness of sitting side-by-side had somehow inspired a glimpse of that affection he once articulate for me. Who knows? As the song says: "Little things mean a lot."

Kristen, I just hate it when someone reminds me that the answer to my problems is more hard work. Okay, I admit it, you are my inspiration, no more Strokenet, more housework...lol Sue.

I had some suggestions about Ray's eating and I thought I'd do something about them. I always used to keep little frozen meals but had run out of them. Today was a cooler day, an ideal day to make casseroles so I planned a couple taking a couple of hours to cook. No1 went well, not a problem, minced pork and vegetables, three portions,neatly packed away. No 2 was on, beef and onions cut up small, but it somehow didn't smell right. Couldn't work it out so kept it cooking. Now I always add vegetable stock that I make myself so I had added one box to each casserole instead of using bought stock. Didn't realise my mistake until I took the beef casserole out. I had put in lemon juice instead of vegetable stock!! I did manage to rescue it by draining, adding new stock and recooking it for a while, but it is not my favourite new recipe. Just to be on the safe side I also cooked up some chicken and portioned that out for Ray, I'll use the beef as a winter filler. I did cook him a hot breakfast this morning too, maybe as it is a fairly hot summer he is losing his appetite by the end of the day. It is worth changing things around a bit to get him to eat a little more, and keep his weight steady. One of the workers from Mum's Hostel told me that tomato skin is something else that people with swallowing difficulties can choke on so I have to peel stoned fruit, peaches and nectarines we eat a lot of, be careful with grapes, avoid nuts, and now peel tomatoes. Meal times seem to get more and more complicated as days go by. I keep worrying about the small things in life. I used to be a big picture person and now I only see the minutae. It is like seeing life through a microscope. Little things that I never worried about before loom large, a cough becomes a fever , a fever becomes lung disease. A thud becomes a fall, a fall becomes a broken hip. Everythng that happens tends to become exaggerated in my mind especially late at night. Somehow I have to rise all above this and get my sense of humour back. Maybe it got lost in the same place some people lost their Christmas spirit.

We are all night owls some times in our life. You can always chat to people like me who have day when you have night there. Remember the sun never sets and night and day depend on where you are on the planet so set your clock to China time and keep on going...lol. Sue.

Hey Lynn, you and Rod are in our thoughts. Worrying is second nature to a caregiver. I too have an occassional panic about the "what if's" with Ray and me. But so far, so good. His bus is back, five hours off is all I get in a week. Better than nothing though. Sue.

Bonnie I usually do have some small frozen meals especially designed for Ray and I have been using them when he didn't want what Trev and I are having. I've about run out because it has been a bit hot for a full on cooking day. I will however get back to that. Ray is 63, he is working age, not old. This shouldn't be where he loses his appetite but seems to have been his condition for the last year or so. I think what threw me was that he was so like my Mum, even to the expression on his face. Sue.

Common emotional side-effects for caregivers: * Anger * Guilt * Doubt * Impatience * Helplessness * Resentment * Depression and anxiety Hey, I just pasted this here from a classic post Jean has just brought back for us. I had a mixed day again today, some things went well, other things just got on top of me. The "last straw" was something Ray did that Mum did as part of her Alzheimers. He put a few things on the dining table, a couple of plates, knives, cups and then he sat there as if there was a meal prepared. I could see him sitting there, looking around. I was out the back working on something else and yes, it was close to a meal time. I thought he must be hungry so I asked him what he wanted to eat and he looked at me and said a phrase Mum also used to say:"Oh nothing much for me thanks, you know just something small." And where am I going to find this "something small" at this time of night? So he got a sandwich. He looked a bit unhappy but didn't say anything much, just took a long time to eat it, looking at me as he did it. I had some left over salad and I felt awful about this "nothing much" meal. I used to have a husband with a robust appetite and a healthy body, he would enjoy steak or two as most Aussie blokes do. He could do a bit of cooking himself and Sunday nights were often his cooking nights. I used to potter on Sunday afternoons and then he would BBQ in summer or make meatballs or one of his other "Ray-can-do" recipes. He would enjoy it more I think because he cooked it himself. I am building up a lot of resentment again, I am also getting nostalgic about what used to be. I think that was where I was when Ray wanted his small nothing-much meal. I know it is not his fault that he is loosing his appetite, having chewing difficulties and was sick twice yesterday. It is not his fault that I can't just whip up a salad or a stir-fry and expect him to sit down and eat it. I have had all the feelings listed above today. I think I REALLY do need to get out more.

"Sleep on it" has always been one of my solutions to problems too. You can wake up with an entirely different view of life. A good night's sleep gives you more energy and maybe some of your dreams have returned. Good luck with your early spring clean, you are certainly ready to get ahead of the game this year. Sue.

Well it doesn't take much to have a day off as a carer, you just ignore all the things that don't need doing and do what you want to do for a change. I mean you still get up, cook breakfast, change the bed, empty the bin etc. You just do it at your own pace. Then you tackle the next dozen jobs or so and voila! a day off. (Okay so I am not really telling you anything you didn't already know, there is no such thing as a day off!!) I had a day "off" today. I sat up late last night and finally got a rough draft of the family tree branch I have been working on completed. I emailed it off to an older man in Canada who shares a mutual, great etc ect grandmother and felt that was a relief. It has taken a lot of my spare time for the last couple of weeks to do it. This morning I got an email pointing out the first two mistakes but I was expecting that. Then mid-morning I got a phone call from my sister (yes, she is back in touch again) saying she had a friend who had access to some family sites and did I want to ask her anything, yes I did. So she may be working on one of my missing pieces for me. It is expensive to do all your research yourself so sometimes you have to decide that near enough is good enough and take someone else's research and add it to your own. I'm at that stage now. Then we went off to our local Family History group. We haven't been for a while so it was a bit strange walking in but turned out okay as we had left ourselves plenty of time to settle in before the guest speaker. He was excellent and gave us a run down about the British Marines, their history up to the time of the founding of the first colony here in Australia (Sydney) and their part in that. He was in full dress uniform and even demonstrated a "brown betsy" to us, it was the first gun to use the bayonet. I believe it is involved in the history of the Battle of Bunker Hill too. We met up with one of our friends there and invited him home for an early tea. That is what we call an evening meal which is early and light, a heavier more formal meal is called dinner. So far , so good. But then Ray became ill and I just got him to the bathroom on time. I hoped P didn't hear the noise that all that involved and after I had cleaned up we resumed our meal as politely as we could, all just picking at what was left. Ray went down for a sleep, I cleaned up a bit,our guest went home. Ray just got up again, still unwell and I just cleaned up again. Hopefully that is the last time tonight. It was a day of mixed blessings.

Nice to see you blogging again Mary. We do need people like you to reply and help the newbies just as we were helped when we first came on. Sue.

Service elevator is good idea, Ray and I use those, bathroom is something else but at least ring and see if there is a locker room or somewhere you could use instead, we once used a cleaner's room. It s a pity when businesses don't comply with disabled access but try and see it as their problem not yours. Ring and say:"We are coming to a function there and this is what we require." Then is is their problem and they need to offer suggestions. Sue.

I asked Ray if he would like to come in and go into the chat room with me. I have been working in the garden, it is hot, steamy and generally unpleasant but I got quite a lot done. It is a struggle to go out in the heat and I am glad I have a good temperature control as I know a lot of people don't. Now I am ready to sit down for a while and do something else. Ray is sitting on the verandah reading, he reads Readers Digest magazines and their condensed books which are given to us by friends. What he understands of what he reads I don't know as he never discusses it with me. I don't even know if what he is reading even makes sense to him as he never comments on it. I hope it does, but at least it is a quiet and peaceful occupation of his time. I asked Ray if he wanted to come into chat with me and he said: "I'm not interested in it to tell you the truth." I want him to be interested, I was hoping from our first couple of experiences with chatting that he would be able to visualize you all sitting out there as we do. We sit side by side in our back room with the screen in front of us and the bedroom to our right, the view to the backyard on our left. I know each of you that read this are doing so in some place you feel comfortable in and just as this is my way of taking a break it is also yours. I know some people read a blog or two before they go to bed. I was chatting to Sarah (spacie1) last night and we did a bit of "I wish that" that caregivers do. I wish that I could dance with Ray, I wish we could go caravanning around Australia as we had planned, I wish we could swim together, share an embrace ( as opposed to ME hugging HIM) etc. You get the picture. Of course we do things together 24 hours a day, but it is not in that full participating way. In my head I can see us dancing, twirling, bouncing on our feet, faces laughing, sweating, puffing at the end of a long number. We danced from the moment we met, I met Ray at a dance when I was still in my teens.We danced for a couple of years often meeting at the dance as we lived quite a way apart, I would get a lift there, Ray would drive me home. We danced at our engagement and at out wedding we hired the local two-piece band and danced for a couple of hours before we went on our honeymoon. We taught our kids to dance at local halls at events used to raise money for the school, or the fire brigade or whatever local charity was organised enough to fund-raise in that way. I guess small town Australia and small town USA have that in common from movies I have seen. Our dancing days finished with Ray's first stroke, he could no longer spin around. The only dancing we did was a kind of two step which we could do holding onto each other and swaying back and forth. It wasn't really dancing and I didn't like it but we did it at weddings when we were expected to get up on the floor. At every other event we pleaded tiredness or something else as an excuse and sat and watched the other swaying and twirling and smiling and circling the floor with their arms around each other and my stomach felt like I had swallowed a cold marble egg and we went home early with the sounds of music echoing in our ears. And some of you will know why I was 42 and crying myself to sleep. Since then I have tried to find new ways of Ray and I doing things together, some like the bowling lasted a while, some failed after two or three attempts. There doesn't seem to be much that Ray enjoys now that we can actually still do. So I do what I can with looking after him and he sits on the verandah and reads or inside watching tv or he sleeps. There is not a lot I can think of now that we could try. What Ray said to me is quite a statement of his state of mind if you look at it; just not interested to tell you the truth.

Or with something else in mind: "Does my blog look big in this?" Sue. Keep on blogging.

Your thoughts were my thoughts when my dear dad died. The difference was that I still had my husband who had had strokes and my Mum who had dementia living with me. I still have some regrets about my father's death as he died wothout his family with him. Mum and I had visited at lunchtime but he wasn't alert and we left after about ten minutes or so (that was as long as she could visit for). Although the hospital called us he had died by the time we got there. I guess you have to remember what you did manage to do for someone and not regret that there wasn't a perect ending. Sue.

Debbie Lay back against the pillows, picture a beach, miles and miles of silver sand, hear the gently lapping waves, issssh, wooosh, issssh, wooosh. Repeat that over and over until you feel better. Okay that is just an example but basically relax...lol Sue.

Trevor and I have just been discussing having a Rolly's Recipes dinner night and inviting the family around. You have some wonderful ideas and although we have varying dietary needs most of them can be adapted to suit our own personal tastes. Keep up the good work mate. Sue.

I don't know if you have old churches in your area that have churches with something that looks like a brick triangle attached to the side. That is a buttress, designed to keep the walls straight and not allow the burden of the roof to force the walls apart. It is sometimes used as an addition to an older building for the same purpose. Flying buttresses reach further up and are often designed to keep the stresses from forcing the ceiling to collapse and the walls to fall outwards. One of my functions in life at the moment seems to act as a buttress, in the family and in the church I belong to. There are small changes happening and when that happens life as a whole changes too. We often do not know to what extent until the cracks appear and then the buttress is used for support. We are starting a new year in Australia. Now any of you think that happened on the 1st of January? That is just when people THINK the New Year starts. For us people here on the coastal strip the whole of January seems to function as a holiday month. Life is wound down, laid back and taken apart while families deal with children on holidays, grandparents form support teams and how businesses and industry still functions I don't know. Life is slowed under the bright blue sky and burning sun. Then school goes back, February comes and the annual general meeting season starts. And it seemed today as if everyone says:"We should do something, I know, let's phone Sue and see what she thinks." And so my phone was busy discussing various projects with various people. BUT there really is nothing much to do or say because our church is scheduled to close on March 19. So reforming the Craft group, arranging to clean out the cupboards, planning for the next luncheon all seems to be part of what an active church does, not part of what a closing church does. It saddened me to remind friends that we were participants in an event that really would change life as we have experienced it. When the church closes we will lose a lot of close relationships, some of our congregation will move to a new church, some will go to another denomination, some will simply stay home on Sundays. Some will continue to ring their friends and I do hope that such friendships do survive the changes. But the network set up to supply emotional, spiritual and in some cases pastoral needs will collapse. In some cases these will be replaced by other services, other friendships even. But some of today's callers know that that doesn't apply to them. Like stroke survivors the aged and frail do not always make new friends. And so my life as a flying buttress is coming to an end. I rang my daughter about this tonight and her husband said I was being unduly pessimistic. I don't think I am. Ray and I are not as attractive package as we were 22 years ago when we joined our present church. Ray was a muscular and active tradesman. He was Mr Fix-it for all that went wrong. Washers on taps, screws falling out of pews, the front doors jammed again? Call on Ray, that fellow can fix anything! And the missus? Good with kids, helping in the Sunday School, studying the Bible with the other women, helping set up the luncheons. And the kids too, just what we want, more young families in the church! And then as others aged I took over their jobs too, flower arranging, secretary or president of the groups, organizer of luncheons, picnics and excursions, visitor to hospital and home. Then Ray had the strokes and that was curtailed a little, but there I was still one of the flying buttresses. I wonder if there is a place where flying buttresses go when their useful life is over? Do we finish up as part of the demolition on site, thrown away or do we become part of a wall, or pavers on a pathway to the new Garden Of Remembrance? I hope there is a plan for us all as I have reassured people today. A plan for all our lives after March 19.

Hey MM, we caregivers have mostly been where you are right now, but you and your family have a lot on going on right now and that may be why you suddenly feel so blue. Remember to break everything down into small steps so you can see what you are doing, plan ahead some and give out some of the jobs to others. The kids, your parents and Richard may be able to help in little ways, kids can peel potatoes, old folk can shuck peas, little girls love to dust or wash up. Include everyone in the chores and whistle or sing while you work. I know from our chats you love the bustle of family life but sometimes you have to have time out too so create a space that is just yours which, when someone sees you there they will just pass on by. Kids love the "special place" idea and may want one too. Sometimes talks on the phone or chats here can help break the tension too. Don't be afraid to take some "ME time". I too miss my "old Ray" but increasing disability has ruled out all but companionship so I have had to accept that. Hey, we would be less than fully human if we did not feel it was all hopeless sometimes but I am sure a lot of prayers are being said for you right now as people view this blog. As St Julian said: "All will be well, and all will be very well." Sue.

Hey Debbie I have a bit of an uncomfortable relationships with my sister too and she is a bit like yours but this weekend she said:"I tell everyone about you because I'm amazed by what you've done since Ray's strokes." You are a survivor not an applicant for the National Housekeeper of the Year awards. You need to stress the long way you've come and the little help you've had apart from a MARVELLOUS husband and she will be the one who goes home envying you!! And if she is well off she can afford to call for takeout for a couple of meals. Keep the phone number handy.....lol Sue.

Lynn it is true that mostly we don't get help bcause we don't ask for any. And that superwoman image does create a barrier. Good luck with the mylogram and do keep giving yourself permission to express your needs to others. It is not a one person job looking after someone who has had strokes, we all need a lot of support of keep us going. Sue.

Beg to differ here, dear friend. In a real group in real time ( I did a group for 20 weeks as part of a chaplaincy program) ideas get distorted, arguments happen, huffs are taken. That was just six of us!!! You can never know someeone or understand someone completely. At best we are all here to help, at worst to get help for ourselves. You are an intelligent person and that is a bonus for us as you provide an insight into how the mind often works. But we are all present as charming individuals blundering through the universe in our own little capsule. We all do our best to be a link in the support safety net. Cheer up, things can only get better (well in my metaverse anyhow). Sue.