swilkinson

Jan, Rachel is right, believing is seeing. But I will keep on praying for you. Sue.

:You-Rock: No doubt about you Jeannie, you sure know how to party! Have a good Christmas my friends, enjoy the happiness the season brings. (((hugs))) from Sue.

Yep, one of my favourites too Fred. Merry Christmas my friend. Sue.

Yeah Mike and Bernie, you made my Christmas. Liquidise some chicken, mash up some Christmas pud and you and Bernie have a good one mate. Wahoo, Mike and Bernie are BACK!!!!! (((hugs))) from Sue.

My mum used to say: "To MAKE a friend you must BE a friend" that saying is about you Lenny, the greatest befriender here on Strokenet. Have a geat Christmas my friend. (((hugs))) from Sue.

Debbie, I lost my purse including my driver's licence and had to have another photo taken today and the woman said: "Sometimes we change suddenly." she then turned the screen around and showed me the two photos, one from just a year ago and one today. I was shocked! Ray, like Bruce, is wheelchair at the moment, I push and curse as I scrape the doorways, past the cupboards etc. Yep, had that voice that sings out when we behold beauty. Tearful stuff when we see nature at it's best. (((Hugs))) from Sue.

Not to scare you but Ray did have his second and third strokes four weeks apart. It can happen. Take it easy and yep, sort out those arteries, get on some blood thinners if you need them and realise that life can be short and needs to be managed sensibly. BUT have a peaceful Christmas and leave it all in Gods hands. (((Hugs))) from Sue.

Leah, just relax and enjoy your family and friends over the Christmas/New Year. We get 24 hours a day we can be content and at peace or worry our way through it. You are in a lot of people's prayers so be at peace. Have a good day tomorrow and the next day and so on, one day at a time is the only way to go. Sue. :yay:

Wow, your blog,your gift to me was wrapped in the prettiest paper and tied up with a beautiful gold bow - so I did get a gift after all. Thank you MC, you are the best! Sue

Vi I sure do remeber you! Thank you for blogging and making your journey known to others here who maybe are a bit fearful of travelling. Those who have been survivors or caregivers for a long time have so much to share with the newbies so when people like you who blog sharing their achievements it is much appreciated. Congratulations to your granddaughter. I am so glad you got to see her shine. Sue.

(((HUGS))) Leah, that is the biggest hug I can give you. I know you need it right now as you face the unknown. But as much as we can be we are with you in spirit. Thank you dear lady for blogging again. I so miss my friends here when they fall silent. I know it is a big effort for you so I do appreciate it. Sue. :juggle: also.

Ruth, what a wonderful son you have. I wish for only good things for him, he is showing such compassion. There are not a lot like him for sure.It does come down to early training so you have done a great job. It must make a big difference to come back from work to hear all the happy news of a day out that William has so enjoyed. And the extra walking is good too as it stimulates both his muscles and his brain. Make the most of this happy family time. Sue.

I guess any therapy is better than none at all. But you have to have the "attitude" too. Ray never had that. Sue.

Fred, all I can say is "May we see God's hand in all of this" because we know that Babylon can be the road back to the Promised Land. Keep faithful. Sue.

“Get over it” how many times have you heard that? Or maybe you have said it, to a child, to a spouse or to a sibling: “Just get over it!” We went down to visit our daughter and her family on Friday; we were to be there for six days and come home on Thursday. We went with Trev, his fiancée Edie and her son Lucas. We had a good easy trip down and were greeted with love and we had a lovely two days. On Saturday we had a meal fit for a king as my son-in-law is a mighty fine cook, his brother is a chef and he has passed on a lot of tips and so the food was melt-in-your-mouth, wonderful food. Our other family were supposed to come, had said they were coming but didn’t actually come. It is a long story, you know what families are like sometimes, can’t co-ordinate their dates. So the rest of us got out the gifts and exchanged them and it was really nice to see the kids’ faces light up as they always do. Funny thing is a $1 set of paints was the hit of the day and several kids and a couple of grownups did painting as their after nap activity. Isn’t that always the way? You can buy absolute treasures but it is something commonplace that satisfies. Ray had been off color for a couple of days and on Thursday the shower nurse pointed out that his left foot didn’t look good around the heel so we left his shoes off all day and it looked better on Friday. But just to be on the safe side I did take him to the doctor who declared it the result of diabetic neuropathy which we know Ray has as a result of his strokes and 20 years as a diabetic. The problem seemed okay on Saturday and it did not look so bad when I gave him a shower. It was difficult to shower him in a tiny recess with no hand bars or anywhere really to stand. I managed but I must say with my teeth gritted as I showered him with a Tupperware jug in one hand and a bottle of shampoo in the other. I just managed and that was all. So Trev went out to a hardware store and came back with a shower head on a flexible hose and fitted it, bless him, and Sunday's shower was so much easier to do. We farewelled Trev and family on Sunday morning as Edie had an evening shift that night. The rest of us went to church on Sunday to see the young people do most of the service and our granddaughter played in the Junior Timbrels and with the biggest smile on her face. This time there were cakes and slices as well so Ray really tucked into them. It was a wonder he could fit in the lovely lunch, but he managed. We had a little nap and then back to the Corps for Christmas Carols and a sausage sizzle with the jumping castle inside as by this time it was raining. Neighbourhood kids came and went, jumping, eating and enjoying it all. It is great that with a little outlay you can give them such a great time. The Salvation Army is known for their work among those less fortunate and this was a great example. Long may it continue to happen. We were looking forward to the rest of the week and the excitement they had planned for us but Monday morning when I went to shower Ray I noticed he grimaced as he walked and seemed to be walking on tippy toes and then noticed a great blood blister hanging from his heel. Panic stations, as visions of gangrene and surgery and an amputated leg flashed into my mind. The short version of what followed is that we all agreed we should come home, that day, as soon as Shirley had organized other people to take over her Monday and some of her Tuesday activities. So we did come home, driving through Sydney traffic with a lot of the intersections manned by police officers as traffic lights were out due to a big wind storm the night before. We went straight to the doctor and he said the same as he had on Thursday, diabetic neuropathy, no medication, no cure, maybe a future appointment with a vascular surgeon and for now bed rest, painkillers and an ice pack if needed. I have had a lot of loss in my life and this was just one more, loss of time with my grandkids. It somehow cut me to the heart and this morning I was crying as I remade our bed yet again because Ray had had an "accident". Ray told me it was all my fault, as he usually does and I should “just get over it”. And I suppose I will, as I have all the other losses and disappointments. But for now I want to just have some time to myself. I need that to get over something like this. And so what happened today? I was asked to mind my older granddaughter. I suppose that helped, as at least I was able to enjoy her company for four hours while her parents bought last minute Christmas gifts without the children present to see what was being bought. Lukie came over for a while and we played golf on the Wii, a game in which he is the champion and I am the chump. I guess it all helps to alleviate some of the pain. But I’m human and can’t always “just get over it” that quickly.

I am so thrilled. Ray came back from his extra Daycare session, the first “Christmas party” for the week (yep, their week starts on Wednesday) and he has a yearbook created by the staff with the help of some friends and supporters and containing one photo for every month. It is a real work of love and I am so pleased with it I thought I would share it in a blog. But then golly gosh it has just taken me almost an hour to scan three photos and create an album here to attach to this blog. I guess I am a technomoron today! How do we describe what excites and thrills us? How do you describe an act of kindness or a pleasant day or a triumph of the spirit? It is so easy to post on our bad days, to moan and groan and vent and have an attack of the “poor me”s. But how wonderful it is when good things happen and as Jan is always saying, our spirits soar and we feel like flying with the angels and singing out “hallelujah” to anyone who will listen. So hallelujah folks, hip, hip, hooray for the men and women, paid and unpaid who provide the Daycare service for Ray and others of a similar need to attend. Hurray for the entertainers, the helpers, and all who provide the food and necessities for the physically and mentally challenged people who attend – bless them all. I had a strange day today. I think I am so tired now my brain is in neutral and so I spent half an hour looking for my purse, keys etc, then drove to the shopping centre without my list and no idea what I needed to buy. By then I had an hour even to get six Christmas presents, three gift cards and some more stamps, to call back at the pharmacy and get four scripts made up etc. Well, I did most of it so I hope it is all successful and they like the presents, appreciate the money etc. Then I dashed into chat and we chatted as usual for the hour and a bit. I could tell my girls were flagging in energy too, they seemed less outgoing tonight. This season takes a lot out of us, caregivers and stroke survivors alike and so we do as much celebrating and socializing as we can but it takes a toll. Partying is for teenagers and that is not what we are now…lol. I am looking ahead to our time away down the south coast with our family. Hopefully this is a time to establish a new tradition – Wilkinson Christmas. It seems our other son and his family are also coming now, not sure how or when but definitely coming down. So we will have the family photos and the happy sharing…well maybe, we have all the expectations of it all working out anyway…as long as we are people of goodwill… Ray is snoring. The combination of the hotter weather, the still humid nights and the party season are really making him tired. But so far he has been happy and we haven’t had any major breakdowns…oh such a good thing that is. We are off to sell tickets in the Christmas stocking for the last time tomorrow. It is drawn on Christmas Eve and one lucky person will receive the contents, all $3000 worth. The ticket buyers say: “I don’t know what I would do with it if I won it”. Me neither. Get the family in, give it all away; donate it to the Salvation Army? Probably a combination of those things would be best. It is always good to remember that there are a lot of people worse off than us. Cold, poor, needy, homeless, or lost, lonely and without much hope, as Jesus said: “the poor are always with us.” And the letters that have come with the cards updating us on family doings of near and more distant friends have cheered me up tremendously too. It is SO GOOD to hear that they are well, have more grandchildren, have finally had that longed for trip overseas. Yes, of course I am jealous, just for a second, before I think this is what I would want for them, these precious friends of mine, to be happy, to be fulfilled, to have some of those things they have been putting off till retirement. Tomorrow I will also see my dear old Mum, God bless her. And God bless all of us too.

Julie, it is a start. Ray has kept off anti-depressants because I have him out as much as I can, among strangers and people he knows, in groups, in couples whichever way people will talk to him and accept him. I was talking to a woman I know today and thanked her for never passing Ray by, wherever she is when she sees him she always stops and says "hello". Part of being "normal" is being "social" so take every opportunity you can to renew friendships and get him and yourself out there. Sue.

I'm glad you finally took the hint my friend. Remember, you need us and we need you. You are so special to me and many others here. Please keep in touch, by blogging or by messenger.I will always want to know how you are doing. What each one of you has to say is important to me. What you are going through is important to others. We who speak (blog) speak for the voiceless, those who cannot find the words to express what they want to say. They see in our blogs a reflection of the situation they are also in. So keep up the good work. :forgive_me?: Sue.

Friendship- I often say I have no friends but of course it is not true. I have kept friends from every part of my life. From my time in England I have the cousins who write to me at Christmas and the granddaughter of the old man next door who writes, rings and home hosted Ray and I in England in 1994 and 1998. She is a long distance friend who I cherish and long to be with again. Tonight we had a phone call from an old friend from my pre-teens, inviting us to dinner with them at a local club. I was there with Ray and my temper intact at 6.30pm. Okay, I am taking a bow here and awaiting your applause. Only one hours notice and we were there - a remarkable feat in my eyes. These friends bring me back memories of a difficult time in our lives, my Dad building our house, having barely enough money to live on, vegetables from the garden and eggs from Mum’s hens being our main source of food. Being invited to eat at their house was such a treat for me then. I have kept in contact with friends from my school days, from Infants, Primary and High school, which was the way school was ranked in my time. I have one friend who I have known since I was seven and just love it when the phone rings and it is her. We can almost finish each other’s sentences we were once so close. Sadly it is months sometimes before we are in contact. Such is a caregiver’s life. I’ve kept in contact with old neighbours and friends from each of our stations in Fisheries, old work mates of Ray’s and their wives, friends of our kids from school and Scouting, all the major sections of our lives. I’ll keep up the contacts as long as I can, I don’t need them to always understand me as long as they accept the validity of the situation I am in. BUT…who are the friends I value most now? You all know the answer to that. The ones who understand about Ray’s strokes, the ones who don’t expect us to be at their beck and call, who don’t suggest we meet them in places that are not wheelchair accessible etc. I know you should not let the strokes dominate your life but the deficits from the stroke demand that certain criteria be met before we caregivers get to relax and have a good time, don’t they? Unlike the “disabled friendly” restaurant we went to where the bathrooms were up a flight of stairs and I was there with Ray in a wheelchair! Today we were asked to look after our grand daughter. It was our pleasure as she is fun to be with. She has ten stitches in her knee as a boy was teasing her and she lunged forward and tripped over a grate and that was sufficient to give her a deep cut requiring stitches. She asked me who the cards I am writing were for and I told her about a lot of people who have been a significant part of our past who we still try to keep in touch with. Every card I write I send with our genuine love and every card we receive has a story behind it, even if there are no words in it other than “love from” it still means they are alive and alert enough to send a card to the right address. I still try and keep up with a handful of Mum’s old friends as I want them to know when she passes. It is such a long time now she has been in care, nine years now, that I am sure there are people she once knew who think she is probably already dead. So I want a small number to know she is alive and in what circumstances. I send a short cheery letter with each card. I don’t tell the recipient about the bad BMs, the chest colds that went on and on all last winter, the way I feel about Ray some days and how close he is to being too much for me to cope with. Instead I have a sentence or two about each family member and tell them Ray is healthy and stable and I am coping okay. Which basically is true today but may not be true tomorrow. I appreciate the friends I have made here. It is nice to have people I am in constant contact with, who do understand and in many cases have been here done this. It is nice that I have had some friends here for the 5 1/2 years I have been on Strokenet and some who have only recently entered my orbit but have become good friends in a short period of time. In particular I want to thank my chat group for their friendship and support. Christmas time is largely advertised as being about family, gift giving, presents under the Christmas tree. It is depicted as being about people seated around groaning tables ladened down with Christmas goodies. But to me it is about renewing friendships too.

On the 9th of December 1990 my husband Ray had a stroke. It was the beginning of the journey we are still on 20 years and counting. It was the beginning of a two week vacation. We had spent a couple of days traveling north to visit Ray’s brother. We had Trevor with us, Trevor was 15 at the time, our last one at school and so we said he could get out of school a couple of weeks early to come with us. The morning after we arrived Ray’s brother asked him if he could repay a favour for him. A friend who had helped with some renovations wanted a cubby house built for his daughters as a Christmas present so Les had said that his brother Ray, being a carpenter, would build one for him. So they set off to first measure up the project and then drive to town to get supplies. The day was hot and humid and in those days no-one gave dehydration a thought. I was home at the BIL’s place and answered the phone when it rang just after lunch. The voice said she wanted to speak to: “Mrs Wilkinson from New South Wales.” I said that was me. She said: “Find a chair dear I need to tell you something”. Then she told me my 48 year old fit husband had had a stroke and was currently on his way to hospital in an ambulance. I thought she meant sunstroke and asked her if she did. She said: “No, it was the real thing.” and that was the first I ever knew that someone young and fit could have a stroke. When my BIL arrived home he said we should go to the hospital to fill in forms etc. It was a 45 minute drive and seemed to last twice that. We finally arrived and I found Ray looking much as usual but slightly lopsided in the face and he seemed to be having trouble with his left hand. The next news that astounded me was that he was a diabetic! And so Ray was in hospital for just six days while they adjusted his diet, gave him some diabetic medication, showed me how to check blood sugars. Then they discharged him to come back home to our own state to our own doctor for advice on what to do next. It is unbelievable looking back that because each state was funded differently I was not allowed to even bring back the initial xrays and CT scans. Our own doctor was shocked. Ray was too young, was fit, not overweight, maybe overworked and of course should have been relaxing on his holiday, not working off a debt for someone else! So it was put down to dehydration, a thickening of the blood and undiagnosed Ray and the medication for diabetes etc was all that was needed. Ray actually went back to work six months after that. He was able to walk properly and use both hands. That was due to working with the Commonwealth Rehab unit operating especially so that people like Ray with slight strokes, or who had survived car accidents who were still young could get some help in returning to the full time work force. And Ray did! He actually returned to work for 8 ½ years. But of course he had not changed his behaviour. Indeed there was never a suggestion that he had to do so. The stroke, unexplained, was supposedly a one-off that would never be repeated. The behaviour, working too hard, missing meals, not drinking enough water in hot times would later come against him again. But for now the doctors and specialists who had seen him said: “It’s over, you are well, go back to work.” Which did not prepare us for the two strokes in 1999, the one in 2001 or the one in 2005. And I became a caregiver in a sense right back then as Ray had massive fatigue issues and would come home from work, drop into a chair and be asleep in seconds, he also slept a lot at weekends. So I took over a lot of things he had been doing. I also went back to studies and got an office management certificate, a new piece of paper to help me get a job. My thinking was that if it happened again Ray could stay at home and I would be the breadwinner. Neither of us knew how debilitating Ray’s two strokes in 1999 would be and that it would retire us both, me to look after him. How different is a slight stroke from those that leave deep and serious brain damage. They can change your whole life and the lives of families and friends and all who are in contact with the family concerned.