swilkinson

Wow, compared to you I think I am an under-achiever! You sure fitted a lot into your life pre-stroke! But it is so interesting to think of you doing those things - hunting especially. It seems we are all so different on this site but we have the "stroke" in common whether as a survivir or caregiver. One day I hope you do get to do some of the things you'd like to do. It is good to have goals and ambitions and plans. It is one of the things that keeps me going through the dark times, that there are so many good things ahead of us still. (((Hugs))) from Sue.

Hey Fred...remember that song that went "how you gonna keep them down on the farm, after they see Paree?" I think middle aged life is a bit like that. When the kids fly the coop there is more money to spare for labor-saving devices and some people have a lot more free time on their hands. So they fill it with those wonderful things called "outside activities". Along with this comes what seem to be a lot of new friends but my guess would be have a stroke and they all disappear like smoke. Now I don't think this is all about women as I know men who bowl three days a week, play golf three days a week and sleep in on Sundays. They have fallen into the outside activities trap too. And if friends is what you want look no further than the houses on your block, the people in your neighbourhood, the extended family. You don't have to go a long way from home to find friends. All you have to do is BE a friend. After retirement or a major trauma like stroke we have to rebuild relationships. In my case from two jobs, one two days a week plus Sunday mornings as a volunteer pastoral worker for my church and one three days a week as a public servant to one where each and every day was spent looking after Ray, my Dad and my Mum. By comparison to those days my life now is a piece of cake! But I happen to think all of life is a constant process of choice. You want to be in a good marriage? Well you got to spend some time with that person you married. And that might mean doing their thing rather than your own. You got to give up some things, take up others. Life doesn't stop but it surely does change. And it will change anyhow so you might as well feel as if you have a choice in the matter. Fred, people will make their own choices, some good, some bad. Here we support them while they are making that choice. We might not like what they decide but it is their decision. I have chosen to look after Ray. End of story. But that is just today's choice. Sue.

Ruth, having a partner with vascular dementia is like purchasing a ticket on a roller coaster and then having someone blindfold you. You can still feel the ups and down, just don't know when to hang on tight for the corners. Ray too has had those explosive days. He is more aware of what is happening but tries to treat it as if it is not "his fault". This means he walks away, I clean up. I keep a lot of torn up towels etc so I can throw them all in the bin sealed in plastic bags when I finish. This can happen three or four times if he has a tummy bug. I keep some Imodium on standby as I know he is allowed to take that. I also feed him bland food and make sure he has plenty of fluids, dehydration can make the dementia much worse, so fluids to replace what he has lost is essential. I don't know why the doctors don't recommend support groups you can join or people you can ring to get help with the problems, but it seems as if you have to find it all out for yourself. I'd go back to your doctor, explain what happens and see if he can tell you what to do, what to feed him etc or give you a referral to someone who can. We have "continence nurses" here, I don't know what you would call them there. Congratulations on the "more positive attuitude" but remember it is okay to go outside and scream your lungs out if that helps or find some activitiy that will release all that tension. (((Hugs))) from Sue.

Asha, her mum was my mum's best friend for a while. She was the sweetest person, we met her for dinner in 1994 and had a lovely night with her. There are cousins I met in England and felt so at home with, I really miss them. It is a funny feeling sometimes, I feel I am a world away from them, as you are from your family in India. In some families the sisters can be sweet and sour, you will know what I mean by that, a real contrast. So I am glad the one who visited us was so sweet. Sue. PS. Ray is home. Guess it is back to work for me eh?

Sorry to the people in chat that I ran out on yesterday. I was a little distracted as I had visitors here and not just any old visitors but English visitors. I also had my sister here and I could just hear their voices from here, and not what they said so I was a little distracted and wanted to get back to them. I am sure that you all did very well without me after the first hour...lol. The visitors had been invited, on impulse, to stay overnight. This was a big committment as I had last met *M* when I was five or six and never met her husband. They have a daughter who came to Australia on a working holiday and has just decided to apply for permanent residency so may be here for some years to come. *M* is my mother's step-mother's niece and while not a blood relative one who's mother both Mum and I were very fond of. Ray and I visited her mother on our 1994 trip to England as she lived on the route of our tour to Land's End. So it was to satisfy my curiosity that I invited them to come up and stay the night. Ray is away at Camp Breakaway for three nights, will be home around 10.30am tomorrow. He will be well looked after, fed and attended to in the shower, entertained throughout the day even tucked into bed at night. He might give me a passing thought but on the whole will just enjoy being where people make him and the other 23 guests feel special and loved. It really is a beautiful, tranquil place too, so a rest for your soul. My sister came early and the visitors had not arrived so about the time I thought their bus would come she went to find them and brought them here from the bus stop. As soon as I heard *M* speak I knew she was okay, she has a way of talking as if she is smiling and I did like her right away. Her husband is nice too... in the somewhat salty way of an ex-Naval man. The four of us had lunch and a chat till mid-afternoon and then went for a two hour scenic drive around some of our beautiful beaches before going out to dinner at an Italian restuarant which I recommended and which fortunately lived up to the recommendation...whew!! After dinner Julie went home and the three of us, sometimes joined by Trevor, chatted till almost mid-night. It was so nice to catch up on news from both of them, his naval career, her time as a schoolteacher, news of our kids, news of their kids. I have seen my Mum's step-mother twice since we came to Australia in 1955. Not a lot for someone who is actually my step-grandmother. I didn't see her on either of my trips to England as both times I was told "it is not convenient". So I was glad to have this small family reunion. I don't think I will be going to England again but have a warm invitation to stay if I do ever get there. Lovely to be so relaxed in the company of people who are really strangers in some way, distant cousins in another. For a little while it reminded me that I am joined to a large group of people who are seperated from me by distance, not by intention. I had plans for this afternoon that included taking a walk on the beach but wouldn't you know it...it is raining again. Trev is home and said he'd take me to a movie this afternoon so we might do that. We might see "The Bucket List". It is good to do something with one of your children sometimes. And with Ray in my care that is often not possible, so I'd like to take advantage of this opportunity. And so to finish the title of this blog. SHE'S JUST LIKE HER MUM...isn't that wonderful?

Donna, you have the rest of your lifetime to record the other 29, so leave spaces for what you learn about being a grandparent etc. I learn something new every day, some good , some bad, some plain embarrassing...lol. Like you I need a reminder book, my mind is too crowded and I don't know what to throw out...lol. So I don't think I could get to 100 either. The 100 things blogs are good blogs though and I have really learned a lot from them. Sue.

Ruth, it is time for love. Spring is almost in the air. You can plan a good year ahead. Someone told me that the even years are always the good years. Nice to see you back blogging again. Sue.

George, you have far too little to do. Time to run for President...lol. Sue.

I am so angry I could spit!! I just found out one of my English cousins was in Sydney for six days just before Christmas and didn't even ring me! The stroke affected Ray, has continued to do so in differing ways. But it also took my llife away too. I just can't believe so many people say they "can't cope" with the fact that Ray has had strokes and that means they can't cope with me either. It is like leprosy in the biblical days, why are these people acting as though it is catching?. What next? I am so disappointed I could scream and rant and rave. I am very good at holding it together for long periods of time but sometimes I let life get to me. Sorry for the rant. Grrrrr! If I was a dog I would bite someone! Sue.

Anchorites ( female - anchoress) were like hermits or enclosed monks but solitary. The anchorite/anchoress lived in an external room attached to an abbey, cathedral or large church. Their task was to have a healing presence. In exchange for food or charitable contributions they listened to the problems of all who came to their window set in the wall that faced the outside world, and agreed to pray for them for set periods of time. There was no "fee" the obligation was on the anchorite/anchoress to pray, day and night, for the "souls" of the parish people with special requests as presented to them. This was their duty and their life. The anchoress we studied during my Spirituality course was Julian of Norwich. She was a visionary as well and I found her writings very touching. But as a past middle aged woman my spirituality cannot imitate hers. I am older but not as wise, busier and less self-sacrificing and yet I feel that in many ways I am becoming like her, solitary yet attached to the church on one side and the world on the other. It is a strange feeling indeed. This has been a much more peaceful week than last week. The routine resumed with a few variations. We had someone who was not Jeff on Tuesday. Now I find having someone new and strange coming to shower Ray really cuts off my respite time. The new person wants to know what the routine is, where eveything is, like the padded underwear, the spare clothes, the toiletries. In some ways most of it is glaringly obvious but somehow the new person needs to be walked through it all. None of them understand why Ray is doing the exercises he does. None of them time him properly so the little rascal knows he can bamboozle them, get through them all in ten minutes and sit down to do his puzzles. Fat lot of good that does his shrinking muscles and bandy legs eh? On Thursday it was Jeff, general rejoicing and off I went for a walk. Came back and stayed home for a while for the social worker from the organisation that provides Ray with Camp Breakaway. He goes there Tuesday till Friday next week. She just needed to update the forms and add the two new tablets Ray takes, the "Flomaxtra" for the "flow" problem and the iron pills for the anaemia. She filled in the forms in about ten minutes which was good. Then Ray and I went off shoppping as usual. We hit a problem at the shopping centre at lunchtime as Ray had one of his "shove the food around the plate with the fork" times. Usually he loves the seafood omelette we regularly share. It was his favourite next to fish and chips. But this week he just tossed it around. That is when I first thought that soon there will not be excursions like this, soon the effort to get Ray to eat out will outweigh the benefits. It is a sobering thought. At the moment if he is dished up too big a meal at Lions or somewhere else I just divert some of the food to a bread and butter plate or somewhere else, cut up the rest into tiny pieces and he eats it. Naturally he has been sick a couple of times and had a few coughing fits but generally he just eats slowly until he is finished. He doesn't sit and play with his food. He has some new ways that seem to indicate that the dementia is deepening again. He doesn't answer sometimes when someone is talking to him, just stares straight ahead. I know it is not his hearing, I don't think it is because he dislikes the person or even that he just can't answer the question. I think it is more like a widening gap between what is said and him formulatting an answer and replying to what is said. He seems slower in a lot of ways. I am finding it more time consuming to do something like getting ready to go out, getting him out of bed and dressed, him having breakfast or a simple snack. The morning tea is more likely to be only half drunk and stone cold in the cup rather than him drinking it and enjoying it. Today again it was not Jeff. The person today was a small, past middle aged woman who seemed a bit flustered. She kept telling me she had had lots of experience in nursing homes. I stayed on for twenty minutes or so after she came but she seemed okay so I went off about my Friday morning business. It is a bit of a worry though leaving someone new with Ray for three hours. He doesn't get respite next week as he will be away Tuedsday to Friday so I will see if Jeff turns up the week after. If not then I will ask for a review of hours and treatment levels etc. I will remind the supervisor Ray has dementia and can't cope with change and say I expect to have at least the same person a couple of times a week...sigh. So as Ray is less easy to get out and about, as he fights change and clings to what is old and familiar I expect that it will be harder for me to get out in the world as much as I am able to now. That is when I shall become an anchoress. Only my anchor will be not to the church but to the house, and the outside world will become the little cyberspace I occupy here and links like the telephone, bringing the outside in.

Mary, you are a wonderful woman, raising your own kids and now helping to raise the next generation. The work will wait...though you could suggest that you get the walls painted as a Mother's day present...lol. Sorry to hear you have had more problems but I am sure you will go on, you have such great strength and endurance. I know you will just find the energy from somewhere to make the most of your life. And the little one gives you a good reason to get up each day. (((Hugs))) from Sue.

We are sending our condolences and warm hugs for you Deenie. And our sincere best wishes to all your extended family at this sad time. It is so hard to lose your Mum, they have such a special place in our hearts. It will take a while to come to terms with the empty feeling but know that our thoughts and prayers are with you. I do so appreciate your comments on my blogs, your presence so often in Caregiver chats and all you have contributed to what I have felt about the support and friendship to be found here. You are a much valued member of the Strokenet community and I am sure many will send their loving thoughts your way. (((Hugs))) from Sue.

Go Bonnie, go Bonnie, go go go - into a smoke free environment and a healthier body that is. Congratulations Bonnie, on quitting smoking. Remember how good fresh air smells? And in spring all the roses and lavender and the beautiful smells of pasture and garden? And fresh washed dog of course, what could be nicer than that? So sad to hear your beautiful mother-in-law has the lung cancer back, I know how fond of her you are. BIG HUGS for both you and John, this is when it would be better to be there with you and share a real hug but a virtual one has all the love we can send behind it. Stay strong my friend and our thoughts will be with you. Sue.

Kim, we have had a lot of bike riders on here so I was hoping one of them would catch your blog and say g'day. I'll just welcome you to the blog community. There are a lot of friendly people here that you will get to know through reading their blogs, it is like a small community in it's own right. How about a blog on how you came to have the stroke in the first place, what steps you took to get where you are now etc? Seems you have made good progress if you are up to riding 15 miles. Can't think that I've ever ridden that far. My bike was solely for running errands for my mum when I was a kid though. Since I've grown up I've only been on a bike a handful of times. Still it is wonderful exercise for you. My dad ( died 2000) was a cyclist in his youth, time trials and long distance. He also did a type of orienteering where you had to use a map and compass to find your destination. He said it filled in all those years before he had a wife and family...lol. Good to have you here mate. Sue.

In the 17 years since Ray's first stroke and the eight years since his major strokes in 1999 I have experienced a wide range of events. Some of them have been good, some of them not so good. All of them have had a lesson for me to learn. However much at times I have resented the changes I know that I CAN change and eventually do. A large Sydney store chain had the motto: "As I change I grow." and there is a certain amount of sense in that. Change does bring about growth and a new steadiness and strength of character. That is why people think as they come to acceptance that they have GAINED something from a bad experience. In the last few months I have been reluctant to post comments on some threads. As a caregiver for over eight years now I am WAY past some of the emotions that are hot and strong when your survivor first strokes. That first flush of anger, those flares of resentment, those screams of frustration and cries of "why me, why him?" are mere echoes now. As each critical event occurs though I go through the anger, denial, plea bargaining, researching, arguing, negotiating and eventual acceptance. Each time maybe it has a little less impact, as I am a little more cynical or resigned or whatever to the fact that life does not always go the way I want it to. Yesterday I took Ray to his Scallywags BBQ. I had agreed to go with one of the other survivors wives to do lunch. I don't know this lady well but thought it would be okay. And it was. But she talked probably for four hours straight. I think a dam of words were released in that time, some of the things from early in her life, others since her husband stroked in 2002. The post-stroke events echoed some of ours but I was interested that she had chosen an entirely different way of dealing with stroke to what I had done. When Ray stroked in 1990, he had six days in hospital, six months of rehabilitation and went back to work, I did some retraining and about a year later went back to work too. But Ray had huge fatigue issues so although he worked I took over most of the things he had done at home. This allowed him to sleep a lot and we still had a fairly good life. I worked full-time for a while and then part-time. He worked full-time so we had enough money for a few holidays, a couple of them trips to England and Europe. So we had a few of the years that we had dreamed would happen once we had raised our kids. Then he had the 1999 strokes and you know the story from there. My friend from yesterday when asked if she would be leaving work to look after her husband said she wouldn't and has used various ways of supervising his rehabilitation and recovery and looking after his welfare since. She talked to me a lot about the frustrations of trying to keep up a high pressure job and knowing that while she is doing this any number of things could be happening at home. I can see that would be so. It is hard to work and worry and that is what she is doing. She has also volunteered with our main stroke group and I think looking at her few people would see the difficulty of what she is trying to balance in life, the full-time work that pays off the mortgage, the role of caregiver, wife, mother and daughter that she feels she is failing in. It certainly is a juggling act and I really admire her for it. But I can also see that sometimes because she seems to be coping so well people fail to see that she has any problems at all. We need to be more truthful, upfront and honest in our words and actions so sometimes the people who should be caring about us can realise the price we pay for trying to do so much. Particularly the siblings of the survivor and his/our children. We should not appear to be doing so well that they can withhold the help and support we sometimes so desperately need. Thanks to her I now feel I have a better grip on the plight of the working caregiver and the added frustration that that brings to the caregiving equation. I don't think I would have had the option to leave Ray at home with his deficits so I didn't have to make that choice. Last week our northern family were attending a conference at a city called Mackay about eight hours drive south of where they live in Cairns. On Friday morning's news were reports that Mackay was flooded after receiving eight inches of rain in a five hour period! Boy was that a deluge or what? So about 8am I rang Shirley on her mobile phone and she told me that luckily they had left the previous afternoon and journeyed six hours before stopping for the night so they were well out of the flood area. I was so thankful and with my mind at ease went about my days work. But her mother-in-law didn't ring and spent all day worrying about where they were, how they were getting on etc. By the time they got home and she was able to contact them she was in a real state. Kind of reminds me of what we all do when we don't get the information we need to make right decisions -- go into panic mode. The fact that she is still in the grieving process for Craig's Dad, her beloved Don who died only last November probably added to the panic she felt too. It is hard to be rational sometiimes when a little voice in your head is saying: "What is going wrong now? Why is this happening to me?" There will always be some little things going wrong in our lives, sometimes a series of them that contrive to push us over the edge into insanity. But we must remember we are strong, made so by the mountains we have climbed over on the way to where we are now.

Hi Sarah Nice to see you back again. Life can be full when you make a lot of changes all together as you have. And that pesky stroke can slow you down. Looking forward to the further adventures of Sarah, Tom, Snowflake,Libby and Ponsonby the dog. (((Hugs))) from Sue.

Beth, welcome to the blogging community. We get to know a lot about each other here. Survivors and caregivers are alike in that we need to try and sort our lives out and seeing things in writing helps with that. I hope you keep on blogging. Looking back on your blogs after a year or so can help you see things with greater perspective. And the other members of the blogging community are great cheerleaders too! So welcome and I look forward to getting to know you as a friend. Sue.

Sometimes you just want to scream and stomp your feet and shout give me back my husband, who took him away. I couldn't agree more. After five strokes, TIAs, falls, surgeries etc Ray is a shadow of his former self. Now with dementia he is beginning to look like an old man with a vacant stare, and he is only 65! But yes, today on St Valantine's Day I did give him some extra TLC and was glad he is still with me. Sue.

Bonnie, I am suffering from the "if-you-just" syndrome. Whenever someone wants me to do extras for Ray they begin their sentence with "If you just..." and make out it is something I could easily do. I guess none of them see Ray as high care and none of them see the long list of little jobs I do each day or how many are left over at the end of the day. Today we went out to a Carer's lunch "especially for Valantine's Day". So I started Ray getting dressed etc at 6.30am , 45 minutes early. The shower nurse came early and instead of having my walk I did the ironing. I had a 40 min drive to take him to the lunch. At the lunch spot I wheelchaired him around, then I drove back home stopping at the shops to pick up fruit and vegetables. We came home, Ray went to bed, I went back to folding clothes etc. Tomorrow I drive him to a Scallywags BBQ instead of him being picked up by the bus as usual. I try to get him out as much as possible and it is soooo tiring for me. I would consider the scooter if he could go anywhere alone, but he is way past that point now. So even if he could use the scooter locally I would still have to accompany him. It is so sad I could cry. And then where would we both be? Sue.

G'day kakii, sounds like an all clear from you colonoscopy. So that is one peice of good news for now. Sad to hear about your uncle, like my Mum his Alzheimers had probably isolated him a lot but he, as a person, family member and friend will still be missed. Sorry to hear about the way you lost your mother, it must have been a shock to you all. Time to give yourself some TLC, rug up well and relax, take some time for yourself and let your mind roam free for a while. (((Hugs))) from Sue.

It's raining again. I know half the district is rejoicing and the other half is growling. I am in the second half, two big loads of laundry almost done and down comes the rain. I usually sun dry my clothes but today they will be hung on airers and draped around the place. I don't consider that an electric clothes drier ( at a cost of about 85cents a load) is a good investment when sunlight is free, but it does need to be fine. We went to the bladder specialist last week and discussed Ray's need for an operation to clear up his bladder problems. The main sticking point is that he would have to go off Plavix for ten days and the bleeding could last for up to six weeks. There is a danger of infections etc. Yep, I know all that as an older friend has just gone through the same procedure. In the end the urologist admitted he didn't really want to attempt the operation at this stage. So it is on with the medication that Ray hates ( he says they give him more frequency at night, so less sleep) for a couple more months and then a review of the case. We went to the local doctor yesterday. The bloodwork showed up a problem that has been around for a while, Ray's kidneys are not doing so well. Nothing life threatening as yet but each set of tests shows kidney function weakening. Yep, that is the diabetes/stroke combination at work. We all know what the problem is but none of us as yet know the solution. We see the kidney specialist every six months so no appointment till the end of April. He will be away in March, maybe skiiing in Colorado as he has a photo in his rooms of him skiing there. Ah, the life of those who tend to our medical needs, so different from our own! For once Ray's blood sugar results were good, but he has anaemia again. This seems to be another problem that comes and goes. Now the solution is a needle a week or another medication. I went to the pharmacy to get this over-the-counter product and the nice girl behind the counter tells me he needs to take it with orange juice, not the commercial kind but home squeezed is best because it is fresh and has the pulp in. Add five minutes work to the beginning of each day as I hand squeeze orange juice to go with his medication. GRRRR! Today I got a call from one of our Lions members, they have been given a couple of scooters and I know they want Ray to have one of them. The problem is they are the big old fashioned kind, big and heavy. Neither of them would go into my car and I don't want to tow a trailer behind with it in. Where we live, on the brow of a hill, is not a place Ray could use the scooter safely. At the end of the phone call my "friend" said: "Well, Sue, the ball is in your court, all we can do is make the offer." So does that mean that if I refuse the offer I become the "bad guy"? It is the little things in life that get me down. I can climb a mountain and stumble over a matchstick. It is no help to give a caregiver more to do, it only helps if you are relieving them of some of the overburden they already carry.

Kathy, congratulations on finding the kind of home you were looking for. That is some achievement in itself. We all get tired, stressed and break down and cry sometimes. This is a BIG move and likely a bit overwhelming for you both. Having moved a few times myself early in our (almost 40 year) marriage I still remember how much stress there was in doing so. As Bonnie says relax and daydream about your new home furnishings etc. Remember to rug up against the cold until your thinner blood acclimatizes. (((Hugs))) from Sue.

Vi, this is a typical Granma blog! I get letters like this at Christmas, the children, the grandchildren and sometimes the great grandchildren, all listed, all with their achievements for the year. It is so good to be included in that kind of family. Glad you have so much to brag about. What a lovely family picture you paint. I hav five grandchildren and my happiest moments are when I have them all here together. Sue. Sue.

Hi Jeanie Sorry to hear you have a tummy bug. Glad to hear you have decided to blog here. All the blog community will welcome another blogger. I have had my blog for over two years and have found it helps me to get it all down, sort of helps me sort things out. So welcome and I look forward to getting to know you more through your blogs. Sue.

sherri, I wondered how you were going in your new environment. Sounds as if you are still the straight shooting, independent lady you were before the stroke. If a little more aware of life and all it can bring now. Some of the medical processes Ray goes through are more like medieval tortures and it is all big payments and a lot of inconvenience to get it done, most of them for very little result. Hope yours is a more positive experience. After eight years I am a bit cynical about doctors "findings". The Pilates sounds good, nice to have someone on your team who thinks they can get some postive results. You hang on to that "excited" feeling for as long as you can. Sue.