swilkinson

Yes, Lorrie, we all struggle with some sort of survivor guilt. Remembering back to when my kids were little and ill and praying to God: "Heal them, give it to me instead." I guess the direction of our lives is never clear cut, never predictable, that way we always feel that little bit out of control. Which is good for us control freaks. Glad to hear Joey is so determined to come through all of this and you are too. I admire you for the battle you are putting up to save yourself and him from all addictions, to re-introduce purpose and value into both your lives. Bravo! Sobriety mind you brings it's own problems, you see things painfully clearly sometimes. So sorry to hear about Joey's friends, we live in a culture that sometimes encourages kids to live fast, die young. That leaves a lot of people mourning those young lives, Joey and his friends among them. Who knows why he survived and his friend didn't? Knowledge like that is not given to us mere mortals. I'll echo the others and say there is still a purpose to fulfill. (((Hugs))) from Sue.

Well, I threw a tantrum and now I am allowed to chat using Trev's computer. He is sorry he is too busy right now to fix mine so said I can use his for Strokenet...Yeah! I guess I just miss all of you so much that it is affecting how I feel about life...or maybe it is just the plain ol' exhaustion from looking after Ray etc. Either way I will be able to host my normal chat next Tuesday night...so be there! Just contemplating doing some sewing, you know that pile of..fix the pocket... sew on the button... does that need taking up a tad? that you always put off..and off and off? Well I guess it is time to look at those things and see what is worth keeping and what is going to be pitched out. It is usually a spring thing but as usual I am running a little late. And then there is cleaning to do, and some cupboards that need turning out. All of this is light work, something to do in my spare time...lol. I guess I don't mind too much, it is better to keep busy and not have too much time to think about life. Reading the blogs I see that for some of us Christmas was great, a family time, a fun time, full of food and laughter and companionship. For others it was somehing to get through and look back on with some relief. I feel that some years too. Fortunately this year Mum was okay, Ray was okay, all the kids and grandkids seemed well and happy. It is a blessing sometimes for life to just be happy and stable. We all know happiness doesn't last but it is like walking through a pleasant valley on an easy path, you may know there are hills to climb ahead but for now you can just enjoy the good times. Reading some of the letters that came with our Christmas cards was interesting. Some focussed on the travels of the friends, some of what is happening to family and friends, some on coming events. It is great to get a "real" letter these days, something you can put away and compare to next years, or find in a few years time and say: "Wow, life sure changes quickly." I send a lot of cards so I get a lot of cards. Some just come back with "love from Bill and Flo" but some have a few lines scrawled inside or a letter..those are the ones I like best. Some people we only hear from at Christmas time, that tiny contact that means "we are still here and you are still in our thoughts". Did you make any resolutions worth keeping in 2008 and the years beyond? I challenge those of you who blog here to write a blog about your resolutions and how you will go about bringing them into being. Have a look at Cam1960's blog for real inspiration, that is a great blog! Too many resolutions dissolve in the weeks ahead. How many of us were...going to lose weight...give up smoking...exercise more... really keep in touch with good ol' Aunty June... last year and maybe even the year before that? Time to 'fess up and get it right this year...lol. I have a pile of books to read, some Clive Cusslers given to me yesterday, a new John Le Carre, a few others of no particular note. I'll take some time to sit out on the verandah with Ray, out on the back lawn under a shady tree, or with my feet up on a stool sitting in my favourite chair. January is reading month. Doesn't REALLY explain why I bought more beads and some wool this morning but the weather will get cooler soon enough and it will be back to the hand-work again. Everything has it's season. I think one of the secrets of happiness is enjoying whatever it is you are doing. I watched my dear old Mum today as she walked in the little courtyard in the middle of the enclosed lodge where she lives. She looked at the flowers in the garden and smiled, she sat down on the couch in one of the little sitting rooms and fell asleep, she got up and walked around the corridor and settled into a chair in the dining room. None of it seemed an effort, all of it seemed to be just part of her life. I hope it is not necessary to lose our minds in order to get the contentment that just comes from living and being and moving through life as if you belong there. I love my Mum and I know that at 89 I won't have her for much longer so appreciate the time I am able to spend with her. Oh what a beautiful morning, oh what a beautiful day, I have a loverly feeling , everything's going my way. Did I mention that I also borrowed a pack of six Rodgers and Hammerstein's musicals? That should have me singing around the house if nothing else does>>>>>

Hi folks and a Happy New Year to you all. New Years Day in this part of Australia is sensational. It is fine, sunny and around 95 degrees with not a cloud in the sky. We went down by the lake for morning tea with a friend and his grandsons and had a terrific couple of hours. We had a walk along the lakeshore, about a mile each way. I was pushing the wheelchair and can tell you I felt every bit of my years by the time we got back to the car. We kept getting off the path to let little girls on new pink Christmas bikes ride through, as it is officially a bike path they have right of way! We also got an invitation to go visit friends for dinner yesterday and spent about four hours with them. In the end we were all too tired to see the New Year in. We got home before midnight and Ray went straight to bed though I stayed up and watched the Sydney New Years fireworks on television. It is always a terrific show. This socialising really wears Ray out, I lap it up as without the social conatact we would be real lonely so I guess I have been pushing him a bit. I will have to program in a few quiet days for both of our sakes. Seems we will have to do the computer the expensive way - pay someone! Our lot seem to be working or doing stuff for others so I am still not able to use my computer, it is still in bits on the floor. So no chatting for a while yet. I really do miss you all so just know you are all in my thoughts. 2008 is going to be a good year. That is my one and only New Years resolution. A friend of mine called years ending with an eight the year of the fat man, I remember 1998 as a great year so see no reason why 2008 shouldn't be too. It is a lot about positive thinking so I have decided to eliminate worry as much as possible. Given my nature that may be a pipe dream but I'll try. We had a surprise this morning as our shower nurse Jeff arrived about 8.30am, his usual time. Unfortunately I had just finished showering Ray. I guess I had assumed as it is an official public holiday he wouldn't be coming. Guess I'll have to pay for that mistake! I am just so grateful for the help we get now. Jeff in particular is good value for money, he is kind and courteous, treats Ray with gentle respect, makes him feel a friend and not a "patient". It is easy to realise that without his help we would be closer to the dreaded time when I won't "cope" any longer. It is getting harder to handle Ray, no use kidding myself about that. Ray has just started on Flomax extra for his water problems, another tablet to give out in the mormning, this one we have to pay full price for. I guess it may be a while before we notice the difference. Ray is so tired a lot of the time now, and also weaker walking. I know it is not because he doesn't exercise, or make an effort or any reason I can think of, it just seems to be something that is happening to him, cause unknown. Maybe he is having little seizures in his sleep is one of the doctor's theories. I just know it is really frustrating for him and more difficult for me. January is going to be reading month for me. We have a few appointments already and our daughter and family will be here for a few days mid-month but I am going to try to take things easy for a while for my sake as well as Ray's. It is a necessity for me to feel rested. The run-up to Christmas is always busy and now it is summer, the time friends drop in or invite you over, so I will accept the invitations that I think we can cope with. I can't afford to turn any down without reason. I really need to keep those friends who are still happy to be in our company. Jean - I finally read "My sister's Keeper" so if I could find the old book club blogs I could add my comments. I liked the book but thought the ending contrived. I could relate to a lot of the trials and tribulations of the mother and the sister. Caregiver over-reaction , caregiver stress and that kind of guilt that results in bad relationships all rang true to me. I try to be "Susie Sunshine" a lot of the time as you know but the stresses do build up, tensions get to breaking point and like most caregivers I have the occassional boil-over. Eight years and counting is a long time to subliminate some of those deeper feelings I guess. Surface views, Sue the angel, underneath....don't let's go there! And I intend to look after Ray for as long as I am physically and mentally able. Just had a phone call from my Uncle in Canada, so commiserations to all of you who are suffering whiteouts, snow storms, frostbite, wind chills and any other snow related ills. I think I will just be thankful that as of today 2008 is great in this part of Australia!

Hey Jean. You were always the first to tell me when I exhibited signs of caregiver guilt. I just read you full piece and I think you have some of it right now. It may seem strange but a stripped bare house was once a sign of mourning and I think that is what you are showing signs of right now. To me you seem to be experiencing a sense of loss caused by the length of time it is taking for Don to recover after the operation. There is a big difference between the expected positive outcome and the present not-so-good state of his health and you are reacting to that. Have a think about what you are going through as a process in a minor grief cycle and see what you can do to go with what is happening here. People said to me each time we had a crisis: "go with the flow" and I always found it difficult, but I will offer that to you as advice anyway. Thanks for posting what is a very honest blog. I think it helps us all to look at stark reality sometimes, rather than the rosy picture we often like to paint. The stark landscape of reality is a powerful place to help us sort out some of our priorities. (((HUgs))) from Sue.

Hi all Have a Happy Christmas - or do the best you can - whichever applies. I have been off the computer as mine crashed and now at last I might see mine rebuilt, everyone was too busy prior to Christmas. Trev said to do a blog entry so all my friends here will know what is happening to us. We had a quiet Christmas Day today. I have been aware the past month or so that Ray is not coping with noise, crowds etc. He seems to have more vagueness about him, as if he is walking about in a fog. He can converse on a casual basis, say approximately the right thing so other people hopefully don't notice, but I do. We have been very busy, yesterday shopping and cooking and wrapping parcels. This morning I gave him clean clothes and said we needed to get moving and he said: "What is so special about today?" He didn't know untill I told him that today was Christmas Day! I think he is not recording as many memories now. He remembers the past still but adventures rather than everyday life. People seem not to be connected to memories either. It worries me as soon I will have to retell his story - as well as I remember it. Today was church and family day. We had some phone calls, a couple last night a couple this morning. The northern family spoke to all and sundry as Mum Shirley and Dad Craig worked on getting lunch for them all. Tori loves to talk to Naomi and Christopher on the phone and the two brothers and their sister did a lot of talking too which was good. They have Craig's recently widowed Mum and his brother there with them so it is laughter mixed with tears. The weather was cool here, the food was cold meats, salads, fresh fruits and a delicious pudding provided by a friend of our daughter-in-law. It was a successful day but again Ray participated very little, the three grandchildren milled around but he didn't interact with them. It is a pity to see him going like this as he always adored playing with kids. Even the present opening seemed of little interest to him. Isn't getting the presents right difficult? I tried hard to get gifts I thought would please and the kids finished up playing with a set of toy musical instruments I had added to the toy box since their last visit. The cacophony of sounds they made certainly wasn't music so I guess their mum was glad the instruments stayed on here! My favourite present was given to me by our next door neighbour. He gave me a gift certificate for a massage and a promise that he would come in and look after Ray while I went! Bless him for his thoughtfulness. Ray has a urologist now, another medication to take, more tests at the end of January to pay for. Ouch!! it all comes at a price. No option of surgery at this stage, and maybe, just maybe, this will ease the incontinence or radically decrease it. I sincerely hope so as I am tired of wet bathroom floors etc. And the added risk of infections for Ray as well. Can't say we had a Merry Christmas, but quieter is sometimes better. No harsh words, some kind wishes, a lot of fun watching the little ones dash around, and a thankful heart at the end of the day that all went so well.

Lorri, none of us here came with halos. I admire you for your honesty. There are struggles in most peoples lives we know nothing about, abusive parents, unhappy homes, wrong relationships, but when we turn around and look on that dark life we see seams of gold, good friends, caring people, single happy events like stars in the night sky. I am glad Joey has you as his mother. And one day your other children will be glad you are their mother too. (((Hugs))) fro m Sue.

Fred, having a stroke doesn't prevent you from having other diseases and maladies. Maybe the doctors need to ask: "If this patient had not had a stroke what would I think was happening here?" As you know Ray has had a number of things happen this year, some stroke related, some not. But it is eight and a half years now for him since the major strokes so we have to be grateful for that. As Lin says, you are in our thoughts and prayers. You have been a major force for good here on this site so keep in mind all you have done and been for people. There are a lot of people who love you here. (((Hugs))) from Sue.

Tree up and decorated, it is a bit "crowded" but Tori had lots of fun doing it. She also colored in some cards for me so some people will get a "personalised" one. We had a heap come this morning, guess last week was the week to write them all. Only two parties to go to this week, one next and then we can relax and enjoy the holidays. January is always down time for me as most activites close down for at last three weeks. That is when I get to catch up on reading and just not doing too much. Good luck all with your "white Christmas" with all the rain etc ours will be a green one for a change. Sue.

I was just sitting here thinking about Ann, and wondering how she was doing. Ann blogged about not being bothered about decorating for Christmas this year. I wasn't focussing on Christmas much so Trev gave me a talking to and today we did a "stand and throw" decoration, nothing in the centre of the room but tinsel around windows, doorframes etc. And our usual big wreath on the front door. Not a lot of decorations but just enough so that anyone coming in knows it is Christmas. :wreath: :santahat: We are also having more store-bought and less home-made this year. There will not be any parties here this year. Some years I have invited in friends and neighbours and of course also had family popping in and out. This year one of our families is way up north and not coming home for Christmas and the other family are very absorbed, with a fairly new baby and three children, rightly so. But as those three grandchildren are going to be here on Christmas Day we will make an effort to be jolly. :cheer: I have invited Tori over tomorrow to decorate the tree. It was a family tradition that Shirley, our daughter, went to her Granma's place and helped put up the decorations and so we have established the same tradition with Tori helping me. Trev has the tree down from it's storage place and I have it half-sized. This was the idea of the nurse/educator at our dementia group who said that when there are children about it is good to keep the tree small so if they do pull it down on themselves it is just a light weight. That made sense to me. Also it is less bother to decorate, takes less decorations etc. :yay: Tori will stay overnight and go to the church Christmas social with us tomorrow night, it is one of those bring and share occassions and should be quite good. Tori occassionally comes to Sunday school and also to craft group so she does know some of the ladies there. It is an extra time for her to put on her Christmas party frock and go out into the grown up world. Hope she is good for me. :juggle: She will also come to church with us on Sunday. As we have a picnic lunch invitation she may finish up coming with us on that too. It depends on the weather, if it is thunderstorms like it has been the last couple of days I don't think I will be driving there, but if it is fine and sunny then it will be nice to sit and chat to some of Ray's more distant cousins and do some relaxing. I am sure there will be a few kids there for Tori to run wild with, that is one of the advantages of going out into the country for a visit, plenty of open space. :ChristmasTree: :yadayada: I spoke to my daughter on the phone for a while tonight, not about anything in particular. It was one of those comfortable rambling conversations you have when there is no real news. Life in the tropical north, like life here, is busy with the approaching Christmas season and summer pursuits. They went to their daughter's pre-school party and Shirley got to spend an hour talking to other mothers. She has also been turning down a lot of party invitations. The life of a Salvation Army Officer is a busy one and she and Craig have a lot to do between now and Christmas Day. Despite the fact that it is summer people still have a lot of welfare needs, even in Paradise. :reigndeer: So tomorrow I will get up early and tidy the guest room, change the sheets, tie back the curtains. Then I will prepare for the "princess" of our lives to come over a weave her usual magic spell on us. Soon there will be laughter and silliness and above all fun! Sometimes when you get over 60 you forget how to do some things like how to have fun, and how to call up the spirit of Christmas. So we are lucky we have grandchildren to share the secret with us. :secret:

Butch, I find after eight years as a caregiver that life gets very "ho hum" from time to time. The relatives rally around for the emergencies, then go back to their old life. We stay with the program and deal with the day-to-day problems. Glad you blogged again. I always wonder what happened to my favourite people here, yourself and Lisa included. Have a happy holiday season. There is a life to lead that is satisfying, pushing your survivor past what others thought achievable is one of my goals. I give myself an occassional break and hope you do too. (((Hugs))) from Sue.

Testing one, two three. (((Hugs))) from Sue.

Ann, no encouragement from me as I think it is "tough love" time again. Remember back to raising teenagers? Your son is suddenly sick EVERY Thursday - then you discover he is due to hand in his science assignment that day? What do you do? 1. The "Early Bird" treament - you get him up an hour early on that day, before he can do the "Mum I am so sick" routine. Ignore all protests. 2. You give him "Emotional Blackout". "Honey, if you still have both legs you get in that car." 3. You give him the "Empty Room" treatment. Everything electrical comes out, he goes in, draw the blinds. This leaves plenty of thinking time. 4. You have the "Kitchen Closed" sign up. No hot drinks, no cold drinks, no bedside service. Nothing, just him in an empty room. 5. You have a "Day at Home" day. You chat on the phone, you come on the computer. "Honey, don't bother me, I'm having my time off, remember?" I am sure you are now thinking of all those times when you pitted your wits against someone who was trying to manipulate you. If this is what you feel Bill is doing it is "tough love" time. (((Hugs))) from Sue.

Donna - dancing - way to go! This is such an uplifting blog. Family and food and fun, the way Christmas gets us together is so great! You gotta watch those cousins - Kristi is a beautiful young lady and ALL the boys will notice that. Tell her to keep her relationships light and happy and she will be fine. The cats antics will bring you a lot of laughs. Lili may look small now but she is young and quick and Crystal had better keep it nice or look out! We had two cats together for a while and it is like watching family interactions. Go on enjoying your family reunions and sharing them with us. Sue.

Hi Jamie Welcome to the blog community. I have no idea what GWM stands for - but then I'm an Aussie! Hope you enjoy this site and all it has to offer. Sue.

Asha, you are so right. I saw a couple of people dance who I would have doubted could achieve it and the joy on their faces was worth a million dollars to their caregivers and friends. Dance whenever you get an opportunity. Who knows what tomorrow will bring for any of us so enjoy today. (((Hugs))) from Sue.

Today was our Stroke Support group (WAGS) Christmas Party. I guess 1st December is a good time to start a Christmas season and I was ready for it. Ray and I slept in till 9am which is late for me. It was just gentle rain and overcast today so no brilliant sunshine to wake us up. Trev had to go off early too as he has an "extra" cleaning job and that will occupy his spare time in the next couple of weeks and earn him some extra money too. The party was held in a couple of rooms in our local club, big area, tastefully decorated, not over the top, plenty of space to move between tables which is what you need when there are a few people with wheelchairs or walkers. There were about fifty people there, men and women, stroke survivors, caregivers and a few miscellanious relatives and friends. The meal was superb, it was good quality, well presented. And yes, it was turkey, ham and lamb, a very good combination of vegetables, cranberry sauce, gravies etc. Three kinds of dessert, chocolates to go with the coffee etc. The disc jockey played the guitar as well and there was dancing - yeah! Now our stroke survivors are mostly 50's and 60's, their deficits range from "hard to see any changes" to barely able to walk. What amazed me was that the more affected they were the more they danced! Some danced with an able bodied caregiver, some with a stick, or holding the back of a chair for balance but all danced with joy on their faces! And they whooped and cheered and made a lot of noise while they did it too. When Ray first had the strokes and we went out I didn't dance. For me it was a sensitivity issue. I reasoned that as we couldn't dance together (and Ray loved to dance) out of respect for him I wouldn't dance either. Looking back that was pretty strange reasoning but it was how I felt at the time. Now I dance. I get in the middle of a bunch of other women with similarly affected husbands and I shake it all about. Ok - stop imagining that! The nice thing about dancing in a group is that no-one is staring at you, no-one is worried about how you look or how awkward you are, they are too busy having fun themselves to take notice of what you are doing. The guitar player was a nurse who works in rehabilitation and he said he had never seen anyone have more fun than we all had. I felt as if I wanted to hug everyone there. They have through the Scallywags group all been so good to Ray, and through being there among such brave and lively souls I have learned so much about making the most of the life you have - whatever disabilities that life may be encumbered with. There were a few who didn't dance, Ray didn't. I offered to hold him on the floor but he didn't want to, told me to go ahead and join in though. One couple sat looking fairly grim through all the dancing. He has started having seizures, had one on the day before the womens weekend away which meant his wife didn't come to the weekend. She looks tired and run-down and I can see it has taken a toll on them both. I wanted her to come and dance but I guess she isn't ready to relax, forget her troubles and just have fun yet. Too caught up in the frustrations of sickness and the general unfairness of life. Such a pity as they are both fortyish with small children and a mortgage etc. The lead up to Christmas can be pretty hectic but it can be a blessing too and a great time to reflect on where we are now and where we want to head in 2008. Dancing - yeah! :bouncing_off_wall: :laughbounce: :Clap-Hands: :happydance: :Dance: :music_band: :violin:

Bonnie, the anniversaries, birthdays etc are reminders of our lost loved ones, we grieve a little every year and that is as it should be. We wouldn't want to forget the ties that bound us together. I know you will bounce back from this but a day on the pity pot or a downer day just shows you are part of the human race. Glad you had Bill there to remind you that life goes on. He seems to have a great empathy and that is good for both of you. (((Hugs))) from Sue.

"It's not that easy being green." ~Kermit the Frog. Hey Vicky, it is part of the pregnancy for some women, that all day "morning" sickness. I was great until the last trimester and had it then with all three. Never mind, the wait is worth it....I think....though if you could just start the process with grandchildren it might be even better...lol. You are going to be a great mum. Just you wait and see. (((Hugs))) from Sue.

Clark, I don't understand life either. Glad you are back on the sunny side of life, hope you get to stay there. Sue.

On Sunday Ray had what a lot of people describe as a "turn". He called out, when I got into the bedroom he looked like a rag doll, arms outstretched, eyes wild, he looked frightened. When I tried to get him up he had no muscle power. I managed to sit him up, then tried to stand him up as he wanted to go to the bathroom. As I got no help from him and I realised he was a dead weight I eventually sat him on the floor and he flopped back. By this time I was panicking and so I ran around the house looking for Trev, then remembered he was down the road with friends. I rang his mobile then remembered he lost it last week. Rang our other son to see if he remembered the number of the "old" mobile he would be using. As I was doing that Trev came home . I got him to lift Ray up onto the bed. That is when I realised the bed was soaked through and so was Ray. We hauled him out to the shower and I cooled him off, cleaned him up, redressed him and got him onto my bed, then when I had it all changed back onto his. Took me half an hour or so to do all of this. Ray slept for about three hours and then when he got up seemed fine. As this was not like any of the strokes I did not call an ambulance. Taking hm to a hospital on Sunday afternoon would not have been a positive move anyway as weekend staff are often rushed off their feet and the patients don't get to see a specialist etc until the middle of the following week. I left it till today to take him to our local doctor. He called what Ray had a "brain infarct". He also called it a brain fit. He said Ray has had many of these and the dementia and continuing weakness is the result. There is basically no treatment and the medication he is on is all that he can take right now. I am amazed that I have never witnessed one of these infarcts but apparently they mainly occur during sleep so the result is just a person who is much slower getting dressed, more tired, lacking apetite for a day or so etc. So maybe for some of you that will explain the lack of progress, those one step forward , two steps back days. On a MRI these tiny infarcts look like white dots so if that is the xray you have that is multiple infarcts. The cause seems to be mostly unknown as yet and therefore untreated. Another one of those things you just rest up after and hope the full strength comes back again. Ray also has a mild chest infection so I got medication for that. You can hear him coming by the rattling noise...lol. Apart from that life goes on. It was Trev's birthday yesterday, my "baby" is 33. We took him out last night for dinner. It was not the world's greatest meal, I think the chef was having an off night. Just barely edible. No cake either but he said he didn't want a fuss and will go out with the mates on Friday night. Guess 33 seemed a nothing birthday for him. It is times like this I realise I am not getting any younger either. Picking Ray off the floor takes me a couple of days to get over now as my back muscles stiffen. I know, get help, call the paramedics, take care of yourself etc.

Ray has some dysphagia problems if he gets into a conversation when eating, at home that is ok, but out with a crowd it is embarrassing so we are really careful in the foods we select. Plenty of small bites, small sips of iced water etc. I am glad you had so much fun with your family. Seems like making the move "home" was just what you needed to go forward into new and interesting projects. I just loved the idea of a memory book! Sue.

Fred, I think we are getting tired of Political Correctness here and starting to go back towards saying what we mean and standing up for our beliefs. I still say "Merry Christmas" and "God bless you" and still give old friends a hug and send virtual (((Hugs))) to people I think need them. I want to see those old fashioned values still around to pass onto my grandchildren's children. But I think I am not the only one and the pendulum is about to swing back to some of this, after all it is courtesy, more than love even, that makes the world go round. So Merry Christmas to you and yours and a healthy 2008 for us all. Sue.

Leah, we are thankful for your progress and improvement, we are thankful that you are here to inform us and inspire us. And we are thankful that you are here to enjoy life as you do. I am thankful for finding this website too as it has connected me to so many wonderful people on the other side of the Pacific Ocean. Cyberfriends somehow make up for all those who couldn't cope with Ray and his illness and disappeared from our lives. You all give me a shoulder to cry on, a listening ear and virtual hugs when I need them. Seeing the lights in New York sounds like a good thing to add to your Christmas wish list. Maybe next year? (((Hugs))) from Sue.