swilkinson

I too hope your country does not forget the sacrifice these young men and young women made. It is easy to say "oh well" and disregard their bravery and endurance. You are a good cheerleader Fred and I hope the returnees honour old soldiers like you too. Prayers are needed in so many areas. This time of the year I pray fervently for broken marriages to be mended or respectfully ended. I think of all the kids facing a celebration with half their family cut away, uncles, aunts, cousins and grandparents disappointed when those special little ones can no longer come for the holidays. Life can be cruel but we don't have to be. God bless them all. Sue.

You are one smart girl! And a very brave one too, most of us hate the Christmas shopping crowds and you managed to get through them with no nasty incidents so good for you. I think with the seizures once you are on a medication that suits the doctor should leave you on it. I know Ray has had reactions to different medications as he is on so many and it is important you feel better not worse on any of them. Enjoy your Christmas and I think your Mom and Dad are proud of you no matter what you buy them. :Clap-Hands: (((hugs))) from Sue.

You have said a whole heap of common sense here Lenny. You would make a good motivational coach. Sue.

I have received a lot of Christmas cards this year. I send out a lot so I get a lot. Most people are polite and send out a card in reply to one they receive. In the cards I sent out I said Ray had gone into a Nursing Home now and briefly outlined the traumas we had been through. None of the cards I received expressed concern or sympathy at our life changing circumstances; even cards from close family were simply signed “Love from xxx and xxxx”. I often wonder about the value of the cheap love we give away. We go to social events and get air kisses instead of genuine warm hugs, we text “luv u” or say “I love you” and do nothing to show that we genuinely do love people. Love is a work not a word. Love is expressed in doing and being with, not saying they are “there for you” and walking away like most of our “friends” and family have done since we began this journey with stroke and dementia. I am busy moving my goods around the house, into storage, into the recycle or the rubbish bin. I have been doing this for 8 weeks now. It is heart-breaking work in a lot of ways as it is like moving away from my own life, saying goodbye to the past Ray and I shared in this house for so many years. In some ways I feel as if I am throwing away the life Ray and I had together. I know that life is finished but I still want to cling onto that one last hope that he will be back here one day. But to do so would be living in a "Fool’s Paradise". So this is another part of the journey to Acceptance. I have several motives for moving Trevor and family in here with me. One is to save them rent money so that they can save up the deposit for a house now. They need $50,000 to just get into the market and put a deposit down on a loan. Stamp duty alone is half that. Here we have very high prices to contend with, we live in a lovely coastal stretch, beautiful beaches and lakes close by, great climate so everyone wants to come here. It is a retirement destination for people leaving the cities behind and making a “sea change”. For the first home buyer the taxes are crippling. The first home buyer’s concessions have just ended. They have been big concessions including waiving stamp duty. So Trevor and Edie were really too late into the market to take advantage of those concessions. Trevor didn’t have a steady enough income before to get a loan, he was self-employed, his small business career had nothing to do with guaranteed income. He has gone back to his trade as a fitter so he has guaranteed income. Edie works in the public service so she has a steady income. So the three of them are trying to pack down too, moving out of the small house they have shared together for the last twelve months. It is uncomfortable to say the least to see how much we are throwing away in order to make this work. For them and for me it is about compromise and making sacrifices and adjustments. I thought at first it was about clearing out two bedrooms and letting them in here but of course it is about the kitchen, the bathrooms, where we sit, what we eat, who cooks, how we work together and how we get some time away from each other. Add to our problems the great news that Edie is pregnant and expecting another child in June and of course the fact that she has some morning sickness and the moodiness that pregnant women have. Take into account the changes that have happened in Lucas’s life and the way he handles it is walking away, being uncooperative, in fact being a nine year old. No “instant happy family” just four people trying to make some adjustments so they can live together reasonably well. And I still have spend a lot of time away from the house to visit Ray most days and do the visits to Mum. There is still shopping and housekeeping to be done and as it is my house the yard work is mine at least for a while. I will have to make some compromises there too as we have a trampoline to fit in and a swing to put up and Lucas needs running and jumping room and I need to decide where some of the pot plants that are in the way are to be moved to. Only keen flower people would really understand that dilemma. For the past eight weeks it has been constant change. We pack some boxes away, they bring some more over and we pack them away. We throw things out only to rescue something we thought we didn’t want but we do. I think we all thought this combining of two households would be so much easier than it has been. After all we all moved originally didn’t we? It is not as if we have never done this before, but before we each had an empty house to move into. We have all had to exercise a lot of restraint. For Lucas this has been hardest as whatever he is thinking seems to come out of his mouth, he does not as yet have a social filter. So he is constantly in trouble for disrespecting his elders. It is very hard for a modern day kid. I think we will all settle down together, we just have to get over this initial shake-down period. So we have to practice a love and concern for each other we often don’t feel. We are family as well as house sharers. We need to make compromises that will last and make decisions based on the common good not just on what we personally want or need. It is a BIG learning curve for us all. As part of my Christian witness I did telephone counselling with a Uniting Church organisation called Lifeline. It was set up as a suicide counselling line but also became a general place for people to feel safe venting about all kinds of matters as well as asking for help, support or advice. Consequently I have heard stories of relationships that would make what we read on the board here seem simple. It is hard to be a family in this world we live in, hard to be fair to others when we want what we want and we want it NOW. And of course there are people in our own families who put themselves first and never give a damn about anyone else, isn't that so? It is easy to shout: “But what about ME?” when we have needs. We may even know others are barely making it through the week but they SHOULD, we think, make us their first priority. Well, I know for sure, from hearsay and from personal experience that is not going to happen. I’ve said before my Dad used to say: “if you need a helping hand, look at the end of your arm” so it is sometimes self help or no help at all. If someone else comes alongside to give you a helping hand that is a bonus. It is not fair to expect others to put aside their lives and give their time to us. Of course some do and we have to be grateful for that and I do mean grateful, singing their praises, giving them thanks, promising to return the favour when we are able. Being thankful is a wonderful thing but showing our thanks is better. It frees us from that heavy feeling of obligation and allows us to resume an equal standing with others. We are not the “poor in spirit” when we return the helping hand or “pay it forward”, we are also in the band of helping hand heroes. A simple “thank you” as long as it is heartfelt and sincere is often enough but a follow up of cheerful friendliness is even better. We do OWE something to those who help us and enrich our lives. At times that is simplified if in return we give those who help us our respect and love.

Lydi, sounds like you are re-organizing your life via re-organizing the house so that seems like a good thing to me. Enjoy!! Sue.

Enjoy the party season, whenever William feels up to going out do so if you can.That is what I used to do each year with Ray with a mixed success rate. Now when I see him becoming enfeebled I am glad we had those good times. The week off sounds good and I am sure you will find plenty to do in it. Making a list always helps me remeber what my priorities are but I don't stick absolutely to it so make it more flexible, part working on the list, part holiday. Sue.

Congratulations on the dancing...no matter what - you DID IT!!!! Sue.

Lydi, it is hard to start anew. You have given up what seemed to you the big stressors but maybe it is deeper than that and starts with getting up of a morning and how you go through the day. Look at what you do, how you react, how you feel, any headaches, muscles aches and pains, frustration starting up, then you stop , think what is happening try to eliminate the feelings of stress. Because most times we haven't got time to think we have all learned to ignore how our bodies are reacting and stroke, heart attack and other major illness results. So we have to listen to our bodies and adopt measures that will allow us to sleep like a baby and wake refreshed. Maybe take up something like yoga or tai chi to relax you. If music helps find a relaxation tape you can sit and listen to. You will learn the stress signs. I tend to tighten my grip when I am stressed so I relax my grip, sit down, meditate (or pray) a while and start again. Some people grind their teeth or pull certain muscles tight. It is all about relaxing muscles and learning to slow thoughts until they simply stop. It is worth a try anyway. Sue.

Orlando, every good day is worth treasuring. We do have a lot of good days but it is somehow the bad ones that we dwell on. (((hugs))) for your mother for all she does for you. Sue.

There is always bad news this time of the year. It is in the media and on the news. It is in the Christmas card from the person you didn’t receive one from last year. A lot of people just can’t manage to send out cards the year of the serious illness or family death so you don’t know about it till a year later. The news may come by phone or even be told to you by a third party. It all seems so much worse at Christmas time too. Why is all this bad stuff happening in the season of good will and glad tidings? No wonder we feel disheartened sometimes in the Christmas season. I have had my share of bad news already so I won’t list it here – marriage breakup news from couples who seemed to have a good marriage, friends sharing a devastating cancer diagnosis, even a bankruptcy, all sorts of things are happening around me. But so far the change for the better in Ray since the adjustments to his medication and the course of antibiotics seems to be holding and Mum was okay on both my visits to her this last week. You’ve got to be grateful for the small blessings. On 9th December it was the 21st anniversary of Ray’s first stroke. I think I have touched on the circumstances in other blogs. We were up in Queensland visiting Ray’s older brother. His brother had promised a friend that when Ray came he would help build a play house for the other man’s daughters. Ray was already tired from travelling for a full day and a half to get there. He still got up early in the morning the next day to measure up the job and then he and his brother set out with a list of requirements to buy timber, paint and fittings. Ray felt dizzy in the hardware store and started walking holding onto the wall. When he spoke to his brother it was in a slurred voice and his brother told him to stop clowning around. Then Ray started to stagger and his brother realised something was happening and took him to his own doctor who realised it was a stroke, rang an ambulance and Ray was taken to a large hospital about 40 minutes drive away. Imagine my shock and horror back at my brother-in-law’s house when the doctor’s receptionist rang to tell me what had happened! Ray finished up being in hospital for only six days in Queensland and then they told me to drive him home. I did so but realised Ray would need to half lie down in the back seat for him to travel comfortably with his vertigo. For a 600 mile trip it was pretty harrowing with me driving his van for the first time. His own doctor here contacted a neurologist right away and we went onto the medical roundabout for the first time. Many different tests, trials of various medications, six months of stroke rehabilitation aimed at his return to work, the actual return to work part-time, then full-time. And 8 1/2 years later strokes number two and three. It is hard for me to pass these stroke anniversary days and with Ray having six strokes there are six stroke anniversaries. It takes some effort to keep my spirits up as an anniversary approaches. It is only when it is over that I can settle back down again. Traditionally since that first stroke in 1990 I haven’t posted Christmas cards off until after 9th December, in case as I did back then, I have to telephone bad news through to his relatives before they have had time to open the cards. I have been very busy this past week as in addition to other things I have minded the two little boys, my older son’s children, for two days. It was quite a while since I had minded them but they were happy to see Granma and by much patient telling I got them to behave reasonably well for me. I love to play with them and playing ball and gardening outdoors was a big hit this time. The house they have moved into recently has a large yard out behind the house and a wild garden so we did quite a bit of weeding, moving pots etc to make it more user friendly for the children. I have started to make some small changes in my life. It is hard to do but I must. There is no going back to how life was in 1990 when Ray had the first stroke or 1999 when he had the two majors so I really have to look at the widows around me and see how they cope alone. I may be a married woman but with Ray now living in a different place to where I live I do in fact live much like a widow does. So I have decided that I need to live on a small amount of pocket money so I cannot do a lot of nights out, joining women friends instead for coffee or a light lunch. The money we saved for our trip around Australia is long gone and my retirement fund will pay towards Ray’s care needs. The Christmas tree is up but so far there are no presents under it. That should happen next week as I shop, wrap and pack them and pile them under the tree. I am hoping that the family plans don’t change and I get to see and spend time with them all. We should try to make Christmas as merry for the children as we possibly can. It is after all mostly for children that we do it. Today I debated what Santa might bring to the little boys, of course the toy catalogues are prized and carried around and they want one of these, one of those, two of something else. Their bigger sister said she is happy with a book or a game or some clothes, she is easy to buy for but what I am going to get any of the adults I don’t know yet. Mum I will get a couple of new bright tops and a dress. It is her standard gift. I went to Ray’s CH Residents and Friends dinner on Friday. It was a bit disappointing as we sat at tables for four instead of six as in the dining room and I didn’t know the other couple. Luckily I am pretty outgoing and in the end we got a conversation going. The food was not very imaginative, and very small servings. As we are also going there for Christmas lunch I am hoping they are a bit more generous then. But in the end it is just being with Ray that counts for me.

Dean, you never cease to amaze me, musical therapy at the pub...well ther's a thought. Must pass that tip on at chat...lol. You are the therapy guru for sure. Sue.

I really am so sorry to read of this your third stroke, I know how hard it is to see all you have gained disappear. It was like that with Ray's two 1999 ones, four week's apart and double the trouble. All I can encourage you to do is to get back up and try again. And I agree, as long as you have sufficient help home is best. Sue.

Debbie, it is hard when all those you love seem to be caught up in some personal trgedy. It is important to remember you survived and they will too. You can be information giver, supporter and cheerleader in their journey just as you have been in ours. T'is the season to be busy...but jolly too. So smile as you work, sing as you do the house and give Bruce a hug every time you swing by him. Sue.

Life is very demanding with all there is to do before Christmas. Today I was on ticket selling again for Lions in the shopping centre and I am back there on Thursday doing to same. I am fitting in visits to Mum and Ray and all the other things I have to do between that and the pre-Christmas get-togethers for the groups I belong to. Most are simple afternoon teas but I still like to attend as we break now and don’t resume again until February. My middle son just added to my busyness by asking me to babysit twice for him this week. His wife has some day shifts and he is on call for his job. I did agree to do one but not to both. Sorry family, I am just beginning to get some freedom and not going to have someone else take it off me again so soon. It is easy to look after Lucas here as I am on the premises anyway but different if I have to take on the two little boys for nine hours. There are plenty of parties on but I decided about half of what was on offer was viable. This is the first year for twelve years I have been able to decide what I want for myself instead of what was viable for Ray. But he would have been able to go to all I have chosen as they all have been in disabled friendly venues, it would have been the hours that would have defeated him, he was increasingly tired even before the last stroke and is now in bed for 14 - 16 hours a day/night at the nursing home. Both Ray and Mum had an “event” last week. Mum’s was a day when she didn’t have the strength to get out of bed which is happening to her more frequently now as her body winds slowly down. Ray had a fall out of his wheelchair, pitched out on his nose. It may have been a TIA as he was fairly sleepy afterwards and much less alert the following day and for a couple of days spoke less than a dozen words. This is like other times, so nothing new. Tonight the Christmas tree went up here, none of my doing this year as Lucas and his Mum did the work. It looks very nice all lit up and I know he is very proud of it. He is finding it hard to make adjustments to his new routines here. We have had a few arguments but hopefully that will subside. I do like as peaceful a life as I can get. I spoke to my daughter and her family by phone and they are well and organising their last minute events for Christmas. The Salvation Army is renowned for its band music and apparently they have a few engagements in their local area. My grandson who is just turning twelve plays trumpet now. He found it hard to learn to play well enough to join the band, it has taken him three years, but he is now one of their proudest members. As I went in to see Ray today a group of school children were coming out. They had been singing Carols in one of the bigger leisure areas. Ray loves to see children participating in musical entertainment; I think it reaches back to his own school days. The organist on Sunday was playing Carols too. The area Ray is in is well decorated without being too obtrusive, I guess with a lot of dementia patients they have to be a bit careful of how everything is placed. I have never forgotten how my Mum “ate” the decorations one year in her Dementia Lodge. The tree was loaded with egg shaped decorations in deep reds and deep purples. It must have looked like a plum tree to Mum’s confused mind so she took each decoration off the tree, had a bite into it and dropped it on the floor. A tree full of woody plums she must have thought. How lucky she didn’t lose a tooth in the process eh? I finally have my own computer up and running at least (yeah!!!) but will be at my other son’s place when it is Tuesday night your time, Wednesday noon mine. I was reluctant to go to babysit for that reason, I’ve already missed enough chats for one year, but he assured me his computer will do as well as mine. I am hoping no major crisis occurs while I am on chat. The little ones should be sitting down eating lunch during that time as I have asked for lunch boxes to be prepared for them. My big prayer is for safety and good health for us all in this multi-generation household. Lucas has his cast off his arm at last and so can do so many more exciting, reckless, dangerous things. And we all know what carnage on the roads the combination of Christmas parties and summer’s stormy weather brings. Hopefully with Christmas coming fast all will be peaceful and calm for us all.

That's great news Orlando, may it be the forerunner of many good things to come. Sue.

Just to say (((hugs))). Sue.

Ruth, you have done a remarkable job of increasing William's flexability. I hope a lot of people read this blog and follow your example. I still wish Ray and I had lasted longer at the pool, I am sure it would have increased his chances of maintaining flexability too. Hope you have a series of treats planned for William as the Christmas season approaches, he has sure earned it and you have too. Sue.

Ruth, wish I could agree with Fred that one day all will come together, not my experience in 2011 for sure. I have decided to have Christmas lunch with Ray (Trev, Edie and Lucas are going there too) and a much scaled down version of our usual Christmas dinner in the evening with our daughter and family up here with us. I can't garantee that there will be other Christmases ahead for us as a family so I will try to make the most of this one. Sue.

There has been no health crisis this week for either Ray or Mum. Last week we thought we were going to lose Mum and at her age, 93, and in her state of health that is to be expected. I don't want her to leave suddenly, I know she won't live forever but I do love her heaps and she is an essential part of my life. I don't want to lose Ray either. I know that is a selfish attitude in a way but it is the way I feel right now. I visited my Dad's grave today. I just do that from time to time. I know it is only his body there but the grave site is on a sloping hillside looking over a small lake, a sea inlet really, and a peaceful place to stay and pray for a while. My Dad was such a good man, kind, generous and always willing to give a hand to anyone in trouble. I will never stop missing him and the wonderful relationship we had. I'm frequently told people still remember him with respect and thankfulness for his kindness to them. He was a humble man and never wanted thanks and praise but people like him are rarer now than they once were. They are "salt of the earth" people. Ray has settled down again since the course of antibiotics this time. He is still anaemic so needs a blood top-up and probably a course of iron tablets again. I think that might brighten him up a bit as he is still somewhat lethargic. His doctor is still keen to do a whole heap of tests to make him "better" I would prefer he was comfortable and well-looked after. He is getting used to the routine of the Nursing Home as I am so I know when Bingo, Pianola music, bus trips and concerts will brighten his day. We had Trevor's 37th birthday celebrations with Ray last Sunday. Trev got there early and so was able to go to the Nursing Home kitchen and got Ray's lunch plated up and we had chicken and heaps of salads that Edie bought so had plenty to eat. We were so glad it did turn out a fine day after a week of rain so we were able to have a picnic in the park. Unfortunately our other son although he did say he was coming and bringing his family dropped out at the last minute. I think his denial of the changed relationship between his father, myself and his family, due to his father's illness and the strain that this is creating for him is going to be a problem to him in the later part of his life. We do try to keep the relationship open to him even when he chooses not to participate. Maybe further paturity will solve some of this. I am learning to "zip the lip" when the new interchanges in my household become tense as they do from time to time. I think in the long run it is a good idea for Trev and family to move in with me but there are a lot of "gaps" where we do not see each other's point of view, which is probably a generational thing. I am enjoying the mornings with Lucas, we mostly have breakfast together out on the front veranda, and some mornings coffee with my daughter in law before she goes to work. It really is good to have conversation and laughter in our house. To the extent that our neighbour now asks: "What were you all laughing about last night?" I find life okay some days but other days are overshadowed by memories and I still do some crying. I am treating it as grief, parting is indeed such sweet sorrow. I have Ray and yet I do not have the Ray I once knew. I am a wife with a husband estranged by illness. It is another stage in the stroke jourey and one I will some day get used to I am sure. I am still trying to get used to the separation, particularly at night when I would help him get ready and tuck him into bed. Just that feeling hat he was here with me made me feel secure. Even though this is none of my making it is surprising how much guilt I seem to feel. Now I am not a partner, not a wife, I wonder how to get on with this part of my life? Friends say: "just keep busy" but that makes for a long day. I still spend three hours most day with Ray, and visit Mum and with Christmas coming I am busy ticket selling for Lions and doing extras for my church groups. But those nights kind of open back up Pandora's box and I have nightmares and toss and turn. I guess there are many others who do that too. I think we do not choose our destiny, it chooses us.

We are surrounded by angels, sometimes we just fail to recognise them. So glad Lynn did this special Thanksgiving for you,those memories will be precious for years to come. Sue.

I am reading the blogs via a friend's computer as mine is down and enjoying all this talk of the festive season and family celebrations. As we don't have Thnksgiving and have Christmas in summer it is very different here. I am doing the "zip the lip" as I have my son and family moved in now. I don't want to cause any strife and our ways are not their ways. Trees and lights and good meals together...stick with the positives. Sue.

Judy, well done, you can through this first Thanksgiving with flying colors and better still - high spirits.I am so glad Oliver was able to eat something resembling Thanksgiving dinner. It makes it all seem "normal" and so much more enjoyable for you too as you have some positive memories of celebrating together. Sue.

I am so glad I read this courtesy of a friend's computer, and so glad that this precious time happened for you. You can't beat that glimpse of "family solidarity" that sweet glimpse of what life can be like when we become people of goodwill. That to me is what the Christmas season is all about. I think this may be a breakthrough for Bruce, back to some kind of "normal" that he can maintain. Be prepared for the bumps ahead though, life is a roller coaster not a pleasant plain. (((Hugs))) from Sue.

Fred. it is true you are an inspiration to others. I think Ray did well to stay home for twelve years after his major strokes, it will be 22 years since his first stroke on 9th December. You are not just alive, you are alive and a blessing to others. Sue.