swilkinson

Yep, George, I think we'll link you to some of the geniuses of the world so you can be part of the "save-the-world" think tank. All we get here is politicians talking about the problems, no-one is solving them! On the "punky day" theory, I think you can have them with or without the stroke. Just the pace of living gets me down some days. Sue.

Sometimes as a caregiver I am so smart. Oh yes, I can do anything. And some days in my haste to do that "everything that needs doing" I do something that capitulates me into pain. There is nothing like rushing something to make you forget the principles involved in the process and down you go. On Monday Ray had a fall. I was making breakfast when I heard a thump! I called out :"Everything ok?" a muffled voice called back: "I don't think so." Sure enough when I went in there was Ray half-way under the bed. Now we have twin beds side by side so I pulled one across, then the other across. Ray was laying almost face down in a heap. So I climbed over the beds and positioned myself behind him. There wasn't much room but I thought it was an easy lift. Not so, it was more of a drag, lift and roll. I guess somewhere during that process I pulled a neck muscle. The neck was a bit sore but I had other things to do. Ray appeared ok apart from "losing a bit of bark" a long graze on his arm so we cleaned that up and I helped him dress. He said he wasn't dizzy so I don't know what caused the fall. I don't bother analysing it these days he has had so many. We had breakfast and he still wanted to go to Daycare so we made preparations for that. As soon as the bus went I went out to the car and tried to start it. No luck. It seemed like a flat battery. Now I could have called my company that does roadside assist but I decided to take a day off. There is always plenty to do here and I did some of it. It was still raining so the laundry got left out of the schedule. By the time Ray was back I was quite tired. Trev checked the battery and declared it deceased so on Tuesday morning I got a neighbour to help me fetch another one. Neighbour had a phone call and had to go so I decided I could put the battery in myself. Right??? Of course. Superwoman was still in control. So I picked it up to position it in the cradle. A feeling in my still sore neck went snap! oh oh. A spasm of pain hit. No worries I have a day to get through here, dose up with pain killers and as we say here: "she'll be right!" Driving to craft was a little difficult as I couldn't kinda look back much but it is only a short drive. Wednesday morning was fine and sunny, first fine day for a week so I got stuck into the work, still a bit of pain from the neck but doses of painkillers and I was fine! So I did some cleaning too, then my stint on Caregiver Chat. I wasn't feeling the best by now but had promised myself the first fine day Iwould clean the ceiling of the shower room. It has a flat roof overhead so gets damp after a long period of rain and mould develops. A long handled flat mop, bleach etc and in a half hour or so it was all fixed bright as new. Boy I can feel some pain though despite the painkillers. Thursday I am in real pain. The painkillers aren't working so I add some muscle pain relief and rub in a linament as well. There is more work to be done. The show must go on and Ray has to go to the urologist. Driving works if I get him to sight one way and I sight the way my neck can now move only to the right. We get to the specialists rooms, park quite a way away and I push Ray in the wheelchair up a steep incline through the pouring rain. (Caregivers please note this is not the way to operate with pulled muscles.) By the time we have seen the specialists I am in pain and a bit fuzzy from the painkillers etc but managed to drive home. By the time Trev gets home I am a mess. Ray is oblivious to all of this, there is still a meal cooking, he is watching tv, everything must have seemed okay to him. What could be wrong in his world? Trev orders me into bed. I go to the front room where there is a double bed and some extra room to toss and turn. He brings in a hot water bottle, more painkillers, different ones from his store. He says these ones are better for the muscles Mum. Sleep, turn, sleep, turn, more hot water, more painkillers, more sleep...etc. Today Trev took the day off work, took me shopping, carried it all to the car, carried it all inside, packed it all away etc. I feel so much better. It may be the painkillers are working or because I slept so much I am feeling more rested. But I think it is more the fact that for once someone saw my pain and did something about it. That is what is making me feel better. The neck still doesn't turn to the left but the pain in my face and shoulder has gone now and I am sure a few more days and I will be fine. I think what caregivers need more than anything is someone to acknowledge their pain. I don't mean pity, or sympathy, but the kind of acknowledgement that says: "something needs to be done here". I was lucky enough to have someone do that. And I guess not beng Superwoman is okay, just for a day or two.

I keep coming in and blowing dust off this blog. It is at the tail end of page 3 and covered in cobwebs. I wish the owner would come and do some work on it. (((HUgs))) from Sue.

I'm going to start writing this and stop when I think I am finished. A good story should have a beginning a middle and an end. The funny thing about life is it is all "middle". Most of us don't remember the beginning, and if you are reading this you haven't got to the end yet...lol. In April 2006 I posted my Bio, here is a link to it: http://www.strokeboard.net/index.php?autoc...=si&img=912 I wrote it as requested by Lin and a few others. We have a lot of Survivor bios but not a lot of Caregiver bios. I recommend everyone reads the bios as like the blogs they give a real insight into the lives of people on the stroke journey. You can read about our life in the past couple of years by clicking on archive on the right hand side of this blog page and reading blog after blog describing our life. In my blog you will read about our family, our support people, our everyday ups and downs. You will also read of those moments of frustration, joy, despair in fact all the emotions common not only to caregivers but to most of the human race. A lot of it is couched in light-hearted words that sometimes belie the strong emotions that I am feeling as I write. It is not that the blog is not real it is just a more clinical and sensitive rendition of life than I would probably give you if we were talking face-to-face. We all think that because we are involved in the stroke journey we are special. A stroke is just a traumatic event, a brain injury. It often seems like an irreversible event, one you get used to but never get over. I realised that today when we were at our stroke suport group. We didn't have a guest speaker so a few people got up and talked about their lives. I have noticed that a lot of people say their lives had been ruined by their stroke, very few talked about the joys that had been brought into their lives by the stroke, today a few people did just that. Like here they thanked people for their support and said what a differnce it had made to them. This started me thinking about the last eight years from that point of view, what have we lost and what have we gained? I think you know what we lost. A lot of you have lost the same things. We lost our jobs, our incomes,our mobility (Ray) our freedom (me), our future income, prospects, our ability to earn our own living, pay our own way. With this we also lost that trip around Australia we had planned, the apartment on the north coast etc. So we lost a lot of what most people think of as being central to their lives. But we gained so much. Patience is no longer what I seek but what I have. I have patience with Ray when his mind or his body lets him down. I don't mean I have patience every time he has an "accident" I mean overall. I have patience with his slowness, his memory lapses. I have patience with myself when occassionally I "lose it" with him. I know this is not the end of our relationship it is just a single incident and tomorrow I will try to do better. I have gained time, I don't work apart from looking after Ray. I do work inside and outside the house, I do all the housework, all the cooking, cleaning, ironing, gardening etc. But I do it at my own pace. I am my own boss. I decide what time I devote to which task. Okay, maybe that is not true as one of those "accidents" usually gets in the way of all my plans, nothing like a large load of washing just when you want to do something else. But one thing about all of this is that it does give me some sense of freedom. It wouldn't appear to but it does. I still feel as if I have some choices in the detail of everyday life. I am "queen of the house" something that would not have happened if Ray had not had the strokes and we had not had an early retirement. Ray has freedom to sit in the sun, he sits in a comfortable chair on the front verandah. He says :"this is the best thing I ever did" and he means it. It is as if he prepared a special place for a future time in his life. Every man needs a special place and the front verandah is Ray's. He goes there whenever he can unless the rain is beating in that way. A part of every day is spent there. I go out and join him for coffee, I have a read sitting beside him sometimes but mostly he is there on his own, it is his place. It is the best place to see the neighbours come and go, to wave to those who know him or those who just wave to the "guy who is always there". That gives him a feeling of still being a part of ongoing life. We have learned to pace ourselves, we have learned the purpose of routine as the framework for our lives. I admit that we are no longer spontaneous and I wish we could somehow get back to the stage when we could just "pack up and go". A picnic, a trip to the beach, even a few days away would take hours not days and weeks to plan for before the strokes. But a stroke survivor who needs a wheelchair, medication, aides and special equipment is not real portable. I do miss that now. But the routine itself can be pleasant. A cup of coffee halfway through the shopping trip, bumping into friends and then standing having a chinwag is very enjoyable. Okay, okay I AM one of those people who block the aisle (and I know people hate that) but who cares? I am retired, right? So I want you to think about the JOYS of post-stroke life in your household. We have to deal with the woes, the falls, the continued ill health, the lack of progress etc. but do we count up the laughs, the cups of coffee we can now share with our partners at a leisurely pace, the phone calls we are at HOME to receive? Do we think about those who have helped us and still support us? Do we rejoice at the friends we have ? And those new ones we have made because we joined Strokenet? I never would have gone into chat but for the fact I found this site. And then, perish the thought, I would have missed out on getting to know all of YOU. Think of that. That old Sunday school song: "count your blessings" is replaying itself over and over in my head. Count your blessings or your joys - a roof over your head, a pillow under your head, bread on the table. Look around, there are a lot of things still in our lives to be thankful for. Count your joys and not your woes for a change.

We had a few people in chat today and we were talking I think about severe strokes, such as Sarah's Gary had and for some reason I typed the title of this blog at the end of the sentence I was typing. I think I shocked myself when I saw it on the screen and wondered why it had popped into my mind. It could be that we have had hints of the old euthanasia campaign back on tv talk shows and I read an article in an old Readers Digest on a mother who "euthanased" her disabled son. It is a big topic and one I don't want to cause a fuss over but we need to think about it from time to time. I wonder as a caregiver if I do harm sometimes when I tell Ray things. Like all caregivers I find it hard to break it to Ray that I am booking him into respite again. I know a break allows me to wind down, lower stress levels, even have some pleasant experiences like when I've visited my daughter and family on my own. But in a way it also subjects Ray to a life not of his choosing. He survives, even thrives on the experience but he wouldn't, on his own, choose it. I wonder in an ideal world if we would find another way of dealing with the situation? I recently brought home a photo of my Mum one of the aides gave me, she is "dancing" with a lovely young girl who is great with all the oldies. Mum has her hands out but her head is hanging down is what is not usually a natural position for dancing. I guess the smile on her face looks more like a grimace but I can tell by the twinkle in the eye the camera can see that she is enjoying it. I have seen this happen to others too, the concentration of just standing on their feet and swaying to the music overlays the pleasure they obviously feel. For some reason our son looked at the photo and said "I never want to end up like this, someone should put me out of my misery first." He is young and so isn't fully of the understanding that we cling on to life at all costs. I hate to see Mum like that too, but when I sit with her and she smiles at me or giggles or does anything to remind me of the personality caught in that worn out body then I rejoice that she is still here. I love my mum. I sometimes wonder what the purpose of the caregivers life is. On some levels it is obvious - one-on-one care is the best, staying at home is what we all want, keeping our spouse, partner or parent at home for as long as possible is what we are all trying to achieve. How often do you hear someone say: "they can carry me out of here in a box" an expressed wish to die in their own home. But with modern medicine and procedures like heart transplants, bypasses etc are we extending life to a point where we don't die of one thing only to prolong a life that becomes of no known worth? It is certainly a modern dilemma. Now add the fact that we no longer have the village system where extended families all pitched in to look after each other. Our children often go far away from home, like my Shirley and her family living 1700 miles away, and often both people in a couple work and that means fewer family members actually available to help care for their invalided and disabled parent, spouse or adult child. So the burden of caregiving often falls to a single person in the family, sometimes like me the one person looking after parents and spouse or child. A really big burden to bear on your own. And society seems oblivious to the fact that a lot of outside help is needed if this trend is to continue. I am one of the lucky ones, I am younger than a lot of people looking after a stroke survivor, I have the experience gained by my Lifeline Counselling courses and the Chaplaincy course so I have the right mid-set. I am able to stay home full time with Ray and don't have to go out and work so that is one less complication. I do however have all the feelings of entrapment and isolation from main stream society that often goes with the caregiver role. I have to make the choice to stay, day-by-day, and so far, so good. And so it does come down to choice I suppose. A caregiver chooses to stay. Whatever the pressure from inside and outside, he or she stays. There are a lot of circumstances where this is just not possible so an alternate has to be found. Someone else caregiving, paid carers, a SNF, nursing home, group home etc. Some other way of looking after a person who needs 24/7/365 care. Some people are capable of making the choice for themselves, some are left with kin making the choice, I guess for some it falls to a guardianship board or some other body to make the choice on their behalf. I'll look after Ray as long as I am physically and mentally able to. I'll try and get the help I need as I need it to make this possible. I will try to take regular breaks, no matter that some times I feel guilty when I do so. If I break down who else will step up to the plate and take care of him?

Yep, I'm in summer but never look forward to those trips to the bathroom in winter. I don't run much but do "hurry" there. Ray had his first post-Christmas blood test this morning, so the trips to the specialists etc have started for the year. That's where all that time and money goes eh? Ray's reached 65, first stroke in 1990, majors in 1999, then he had a prognosis of three to five years so you have both beaten the odds in the best possible way. It's nice to see you posting and blogging again. Sue.

Billie Jo, you were missed. I sometimes check back on page 2 and 3 of the blogs to see who has been off for a while. It is like losing a friend when someone stops adding to their blog. Ray has had multiple strokes and TIAs too and I know what a fight it is to get back each time so congratulations on the effort you are making. It will be great when you have made it back to your old "new normal". I think Ray takes six months after each small stroke to feel as if it never happened. Sorry to hear about your kids losing their "gandpa" it is so sad to see that generation go. And with them go all those special stories. Good to have you back, happy blogging. Sue.

Fred, maybe draw a circle a couple of hundred miles across and see how many members you can find living in that area and invite them all to your town for the day. Use a park or other nice public place to meet up, tell them to bring a picnic to share and Voila! a group reunion! Remember you are most welcome to drop by here anytime. Sue.

Funny you should be the one who is so "remote" and yet you have caught up with three others now. Last night I asked Trev if it would be possible when the weather cools down for him to drive us the other side of Sydney to meet up with Ken Masson *Aussie Ken" and family. Trev suggested we wait till the end of March so it would be cooler for Ray. Where there's a will , there's a way. Hope we can take a picture of us all together and put it in the "Members meting Members" section of the Gallery when it happens. Sue.

Donna, I think we are all entitled to our privacy in our own home and having unwanted guests can certainly feel like a home invasion. I am SO glad they got out before the deadline. I am sure in time your brother will be back to talking to you again and all will be well. The not smoking issue is something else and I guess you will get over it in the end. A friend of ours quit and put the money she would have spent on cigarettes into a little box and didn't count it till the end of the month. She said once she actually saw the savings she never wanted to go back to the habit. We are here to support you whatever you go through, so if you can't sleep and log on and I am on the site send me a message and I'll come and chat to you. (((Hugs))) from Sue.

Ken, glad you enjoyed Australia Day, what wonderful weather we are having for the whole weekend. People love to spend it outdoors if they can. Thankfully they didn't have to spend it in the shopping centres as we do when it rains here on the coast. See if you can get some help getting out and about. I had a big shopping day today, went to a local discount grocery store and did really well. I didn't have to carry it all to the car etc because Trev came too and did it all for me. It is such a big help. I don't know what age your kids are but if they can play sport they should be strong enough to push you most places in the wheelchair. Sooner or later we all have to ask for help, it shouldn't be a problem, we just have a need earlier than other families who neeed the help in their eighties. Our Lions Club asked around for a scooteer for one of our disabled Lions and got it up and running for him. It is part of what we say we do, help the needy, so why not occassionally do it for one of our own? The minder Ray has on Fridays also looks after a veteran on Thursdays, takes him out for four hours by car and wheelchair, maybe you could access a service like that to get you out more? Sue.

It's Sunday today. Fine, a little too hot, even the breeze is hot. Looks like summer is back again. It is the Australia Day long weekend. A few years ago our national government said we were going to celebrate on the day, January 26th, no more long weekend, this year it is a Saturday and we still have a long weekend. Ah well, it is nice for families to have a long weekend to finish the school holidays so I am not begrudging them. But I lose a day off, no Daycare for Ray to go to so tomorrow I won't be able to do all my usual Monday things. I am sure I will still survive, just feel tireder by the end of the week. Yesterday was a really good day. We had a service to celebrate Australia Day followed by breakfast at church. As entertainment there was a choir singing Aussie songs, the old and the new. It is a bit emotional singing all those songs that remind us of our pride in our country, and it brought tears to my eyes. I guess every other country does the national pride thing occassionally. I've been an Australian citizen since the early '80's. I was born in England and came to Australia in the days when you automatically became a permanent resident if you were accepted as a migrant. I decided to become a citizen for a few reasons: Ray is an Australian, my kids were born in Australia and it seemed odd to cling to the fact that I was born elsewhere and talk of England as "home" so I applied for citizenship. I am a proud Aussie now. Then after we came home I did a Saturday clean-up, laundry, ironing, a bit of clearing out. Then it was time to clean ourselves up and go next door for a neighbour's BBQ. We get an invitation for dinner with our next door neighbour a couple of times a year. He is a competent host and it is always good food with some thoughtful preparation and deference to Ray's needs so very enjoyable. Last night was nice, some of the neighbours we knew and a couple we didn't, about twelve of us in all. Good food, good company. It was a pleasant night outside in his back courtyard where we ate and the temperature was perfect. We didn't come home until after ten. There are not a lot of places we go and enjoy the experience these days. Ray's routine doesn't give us much freedom to accept invitations now. I remember I wrote some time ago of how going to a party operates for us. I have to prepare Ray to go. This starts in the morning with psyching him up. He needs to be in the mood, prepared to wake up early from a nap, have a shower, consent to putting new clothes on. Maybe the meal will be late so I give him a mini meal to take his tablets with. Then I have to prepare myself to go. I have to prepare any food we take with us, any giftware wrapped and ready, everything into the car. I have to drive there. In summer this is fine, in winter it can be a marathon. Going next door was only a problem as far as walking there went. Out the front door, down our steps, down the path, across some uneven ground, up the next driveway, up a path, up some steps with no handrail, along the verandah, through the house, down some steps into the back yard. We had lots of offers of help but Ray and I are in a routine and walk in unison with me giving muttered instructions. The trip back home was in the dark and Ray was very tired but Trev came over and half carried him across all the hazards. He had declined the invitations to come over, he enjoyed a meal on his own without us I think. Living with your parents one of whom is an invalid is better if you can spend some time alone. I can relate to that big time. Today we had a sermon about change. Not the kind of change where you move, but where you change your attitude towards something or someone. It was thought provoking for me as I have been thinking a lot about change. It could be because we are that period when all our appliances are close to breaking down, the cupboard door hinges going etc. Outside the gutter leaks, the fence wobbles and the car sounds as if it could do with a tune up and a set of new tyres. The normal changes that the wear and tear of living life day by day brings. Each change brings with it a need to make some decisions. Will I have a new fridge/freezer or seperate entities? If I need to have a new kitchen will I need to change a lot of things around? Maybe it is time to decide if I want a new stove like I have or a combination of hotplates and oven? Moving would be easier wouldn't it? The car is now three years mine and it's warranty runs out soon so do I need to think about getting another car? No, no, no - I have just got used to this one! And finding this one was difficult as I wanted one that I could lift the wheelchair into in an upright position as it is so much easier on my back. Okay I could have one of those gadgets that lifts the wheelchair onto the roof but that reqires parking in a place where that is able to be done. It is all a matter of weighing up what needs to be done and then doing it. I find all this tiring in the extreme. I probably missed most of the sermon because I was thinking along these lines instead of listening. Then there was a potluck lunch as a farewell to a couple who have been tireless workers, they are moving on to new endeavours, she for further ministy training, he to help as a volunteer in an organisation which needs his pastoral skills. You don't replace people like that - others take on some of the tasks but there is always a feeling that someone is missing. I don't agree with those who say everyone is replacable, they are not. We are all individuals and bring a unique character to any task we take on. So we all leave a gap that can't be completely filled when we go. Life may go on but maybe without the same rhythmn. It is easier sometimes to just go on doing what we are doing, to not think about what lies ahead. But that sometimes leads to greater expense as something that breaks down has to be replaced instantly, leaving us with less choice. So maybe by thinking about making changes now in the end we will be better off. And the bigger changes - lifestyle changes - will inevitably overtake us not matter how we plan for them. As long as our attitude is right things will turn out for the best.

I just talked on the phone for two hours. Well, mainly I listened. It was quite a marathon as the person who rang me was quite emotional. It was a friend from years ago whose church is threatened with closure. So because he knew I went through this just on two years ago he thought I would know "ecxactly how I feel" and so he rang me. I gave a little advice, a lot of encouragement and said he could ring any time he wanted to bounce more ideas off of me. That was about the most I could do, promise to listen to what he had to say. I have a bit of a problem as the year starts up again of people coming and asking if I would like to go on committees, teach Sunday school, look after a stall at the fete etc. Yes, yes, yes, of course I would like to do all those things. But in reality no I can't. I can't commit to being at a certain place at 3.30pm on a Wednesday every week (Kid's Club), be there on a Sunday morning at 9.30am four weeks at a time (Sunday School) or even organise something once a month. I have Ray to look after. Ray is not an afternoon person, he can't be left on his own so I have to take him everywhere I go. He is ok in the mornings but if I do Sunday school I can't accompany him to church. I'd need to be there early to set up etc so would have to get him up an hour early etc. You can see where I am coming from. It is not so easy as a caregiver to live a life of your own. But I do try. This means my life is in three parts, those things I do for Ray, those things we do as a couple, those things I do for me. So doctors appointments, trips to specialists, pharmacy, blood tests etc - Ray. Dinners with friends, Lions Club, Apex40, church etc - us. Then there is things for me. This is all squashed into my free time, when Ray is in Daycare etc so it is a small slice of my life. But at least I do have that chance to be just myself. Friends comment on how different I am when I am not with Ray. Of course there is a difference - I am not being Nurse Susie, just funny old Sue. I have thought from time to time that I am losing my mind, my personality etc. But I was talking to a young caregiver a few weeks ago and she said it is like forming a new community. You leave behind those people who were work colleagues, the people you served on committees with etc and you take up..in my case Strokenet and Dementianet, the people at Mum's Dementia Lodge etc. So you don't really lose those pleasant acquaintances, you just swap them for another bunch. I didn't agree at first, but thinking it over I can see some merit in that idea. To do anything in life you have to put some effort into it. So I have been lucky in the things I have chosen to do like be involved here as a chat host and at Mum's Dementia Lodge where I talk to the staff, the other visitors, family members etc. I have been to a few social functions at the church and got to know a few people casually there as well as the craft group where I meet the same ladies once a week. I know a lot of people are reluctant to join groups but they can be a great source of support, whatever the nature of the group. So hobby groups, self-help groups etc can introduce you to people who remain pleasant starngers until you let them closer to you to become almost friends. To the shy this is hard I know but most of us can find something to talk about if we plug into special interests from our youth etc. I joked with a friend tonight that I am fast becoming a "dear old duck". At my last church we had a nice woman in her nineties who had moved up from Sydney to live with her daughter. On her first trip to the shopping centre she ran into a family from her old church..as she left them she heard one of the sons say: "Who was the dear old duck?" She turned around and said : "I heard that." and instead of being embarrassed they all laughed. So that became their affectionate name for her and to the rest of us too when she came with them to our church. At her age, unable to walk fast or far she was our most prolific knitter, knitting rugs for the "poor old folk at the nursing home". Now twenty years later I am crochetting rugs for the next generation of "poor old folk". It gives me something to do and gives others something they need. So what does all this have to do with being supportive? Lots. There are many ways of supporting others, listening, giving advice, hands-on helping, monetary donations. If you can't manage one way you might be able to manage another. So there is no reason to think there is nothing you can do, you can always do something to support others. In some cases there is a big cost in both time and money, giving up something you want to do in order to to help someone else. Even in extreme cases, like being a caregiver, giving up life as you've known it to that point. But there is ALWAYS a reward, new friends, a pat on the back, maybe just the satisfaction of seeing someone smile and knowing you had something to do with that. It is a benefit to all of humankind when you find out how you can use your talents to help others...in whatever way you can.

Fred, every year is a good year. It may have it's ups and downs but it is another year older and wiser, another year of practicing here on earth for what is to come. And there are blue sky days and grey sky days in each of our lives so we have that in common. I appreciate your words of wisdome too. Just had a letter from one of our older ministers now moved back to Sydney and he has Parkinson's and now some signs of "memory loss" creeping in and yet he sent me a letter full of praise and thankfulness for the life he has. It is staying positive about life that counts, not listing what you can't do but still being able to appreciate each day, each person you meet, each meal you have. Our blessings are measured here in children and grandchildren, friends and all those delightful folk like those on this site who brighten each day. (((Hugs))) from Sue.

Wendie, I could write a book on this subject but most of it would be about my dilemma so I'll concentrate on a bare outline. I moved my Mum and Dad in with me as Ray came out of hospital after his 1999 strokes. I had them both here for four months ( Dad died in January 2000) and Mum here till September 2002. I don't regret what I did but will say caring for them all almost killed me. It was a HUGE committment, far too much for one person to handle. I visited Mum today as I do most Mondays and Fridays. She is no longer mentally alert but still walks around, smiles, eats, whistles a sad little tune. She has good days when she is alert and alive to what is happening around her and bad days when she mostly sleeps all day and walks the corridors all night. She has a room of her own and very good care. It is a 26 bed hostel style lodge with a central courtyard and an inside walking track so ideal for a person like Mum who is still able to walk. As she went there for respite a few times she was familiar with the place when she moved in. If she had been like Ray, physically disabled she would have had to go into a shared room in the nursing home. That would have been a harder decision for me to make. In the first two years she was at the lodge I could still bring her home, take her out to eat, bring her home for birthdays and celebrations so I still felt she was a part of the family. Then when she wouldn't get into my car for some reason that changed and I then just visited her twice a week. We all have to make decisions about our elders, and sometimes about our survivors or ourselves - not easy. I knew when it was time for Mum to go into care as I was no longer coping and Ray needed more of my attention. So I guess you just have to trust that this is the right time for your Mum too. I wish I was there to talk this over with you, dry your eyes and give you a hug. (((Hugs))) from Sue.

You are so right about the sleeping as soon as the little ones are gone Bonnie. I am giving myself some time sitting here to get my head straight again! The family drove off about an hour ago. I miss them already but I know that their paths and ours will always come together at intervals, our love will call them "home". Today I got an invitation for Ray to go to Camp Breakaway at the end of February for four days so will take that as a little break. I might go to Sydney for at least one night and catch up with a couple of friends who I haven't seen in years. I am trying to pace myslf more this year - that is my second resolution for the year. I have in the past done too much and made myself ill because of that. I have a caring nature and sometimes that means I put the needs of others before my own to the stage where my needs never get met. I am too old, and I hope too wise, for that now. My daughter warned me to take better care of myself. "I do understand Dad's need , she said, I want you to be healthy too. " Bless her. Sue.

Donna, just had my northern family here for four days and it was a joy having them and a relief to wave them off an hour ago. I've had other house guests that have disrupted our lives too. It has to be personal choice or it doesn't work. I guess you didn't really have the choice and that makes it more awkward. I'm with Bonnie, line up the bouncers and out they go when the two weeks is up. With your medical troubles etc you don't need the extra stress. And no, I don't see you pressing the doorbell at the heavenly gates for a while yet. (((Hugs))) from Sue.

Wow, it is so tiring with littlies in the house. And it has had to be in the house as we have had a very wet three days. But there is plenty to do here, Granma and Pa are really very kid friendly so we have had a great family time. Trev generously decided to give us all his attention this weekend and the kids have loved the interaction. Wisely he has decided that if anything happens to him ( and we pray it doesn't) then the nieces and nephews will hopefully have happy memories of him. Of course that would apply to the older ones but the little ones are too young to be building memories.I think this stems from Ray's Mum dying when Trev was only two so all his memories of her are the shared memories the rest of the family have all imparted to him rather than things he himself remembers. We all have those regrets from our childhood I guess, of folks we wished we had got to know better but missed the opportunity. Trev loves to play games with them on the computer. Tori and Christopher are the right age and just learning to be competative, Naomi at three can push some buttons with some help. She was happiest dancing to the songs Uncle plays on his computer. He has some of the little ones favourite songs pre-recorded and puts them on to watch them dance. I crept out and looked at them a few times and it makes my heart really glad to see them all have so much fun together.As a migrant child I missed out on the family interaction once we came to Australia when I was seven and so it is an important part of my life now. We have had three different BBQ meals, one on Friday night with all the family, last night with just Shirley, Craig and family and Trev and tonight again with all the family. We have such a variety of summer foods that it is easy to have different meats and salads at each meal. The boys, bless them, barbecued and helped with the clean-up or I would never have coped. Ray has picked up an appetite since the kids have been here and eaten quite heartily for him so I am really pleased about that. I have been providing a choice of desserts or fresh fruit so naturally Ray has opted for the sugary desserts but I can hardly blame him for that. Of course it has been very noisy with five little ones in the house ranging from eight years old to four months old. The cousins love to shriek and yell and run and chase and scatter toys and clothing all around the house. It is like living in the centre of a whirlwind. But it is so much fun for them all. Ray has escaped by reading or doing his find-a-words in his favourite chair on the verandah but today when the wind was too strong and the rain threatened to wet him he moved back into the house. He hasn't interacted a lot but I don't think the little ones have minded that much. Tori and Christopher are aware of Ray's short-comings but to them he is just "Pa". Tori expressed tonight what we all feel, that it is so unfair that Aunty Shirley and family live so far away so we do not get to see them on weekends like we used to. She is so right. It was good when any of us could just ring and invite ourselves over for afternoon tea or lunch, when we all got together for every birthday, when a phone call would bring them over here. But life is never that simple is it? I can understand her frustration as with two other little ones her mum and dad are unable to promise to take her to visit the northern cousins anytime soon, too expesive for them all to fly and four days by car with little ones is not practical. It will be so sad waving them goodbye tomorrow as we don't know when they will be down here again, possibly this time next year. I am planning a trip up to Cairns again in a couple of months time for me and then another trip later in the year maybe June or July when the northern weather cools down and it is a good time for Ray to fly. But then we have to hope that everyone's health, particularly Ray's, holds good for that period so we do get to put the plans into practice. And we all know all the things that can and do go wrong as we age eh?

Hi there, welcome to blogging here on Strokenet. I'm Sue, caregiver to Ray and my blog here is "Sue's Sentiments" so if you hit "archive" you can see I've been an active blogger for some time. I hope as you blog more we will get acquainted and I look forward to getting to know you better. Your first blog certainly says you are willing and eager to get back to health and wholeness - so good for you! Sue.

Bonnie, a lot of what you wrote sure described Ray after his first stroke. After he returned to work he denied it ever happened. Of course he could still drive to work, work all day and drive home again. What he couldn't do was go on from there, there was never that "extra" energy to have fun with. With even a slight stroke post-stroke fatigue is a BIG factor. For him every day was like climbing a mountain I realise now. The caregiver who gives to work to look after a husband, partner or parent also loses the pay check and the job title. When people see me alone they ask me if I still work! I say I work hard looking after Ray but there is no pay for it. I do it out of love. I thank you for putting what you are feeling into words. It helps me too see it from the survivor's view point that way. (((HUgs))) from Sue.

For those of you in the northern hemisphere the Christmas season here probably makes no sense. But picture it as if it is a combination of the summer in July and the madness in December. There is something about the Christmas season here that changes life. It is hot, dry, stormy, it is the seaside season and BBQs and camping, it is family get-togethers and end-of year functions. It is so many things to so many people. And with our mixed culture it more or less goes on till 6th January as the eastern Orthodox people celebrate their Christmas on January 6th! Lucky them as they buy all their gifts for 50% off at the "after Christmas sales". It is also peak suicide season as the dream of "Christmas with family and friends" downgrades into family feuds,walkouts, broken dreams and the slaughter of ideals. It is the time when people drink more and fight more. The post Christmas bills come in and people realise for the first time that their annual extravagance has them in the grip of debt once more. The impact of road accidents and other fatalies bite and the world seems less glitzy as the decorations in the shops come down and the rough reality of life sets in again. For caregivers like me the services we rely on are scarce over the Christmas period so we are down to minimum hours, this for me is five hours, showers for Ray on Tuesday and Thursday, three hour minder on Friday. Which means Ray is irritable because he is out of routine and complaining once more that "she is always dragging me around". Yep, those shopping expeditions turn gigantuan as we battle through the tourists that flock here for the holidays season so the three hour shopping trip can easily turn into five hours as we queue, queue and queue some more to get to the check-out,to get into the next queue at the next store. The heat and the noise and the people bumping into Ray's wheelchair, some snarling at us until they see it is "just some poor bloke in a wheelchair, poor coot" as one guy said to his shopping companion. Funny how that "peace on earth, goodwill towards men" feeling evaporates so quickly after Christmas. I just wish it would hang around for a while and see us through the post-Christmas doldrums Then there is the heat, the hot nights, the humidity and tossing and turning instead of sleeping. I find it difficult to fill the days in a satisfactory way sometimes. Just the lack of normal social structures as our friends are away camping, boating, visiting far-flung family while the grandchildren are alway from school for the seven week summer holidays. Of course some of our friends are the emergency minders while their grandchildren's parents go on working. So ringing them is futile and waiting for them to reply to emails takes a lot longer. Where are you all, I want to cry, why have you gone off just when I need someone to talk to ? The whole pattern of life seems to be shaken up like some bright summer kalaedoscope. Summer was a time I once relished. Summer meant days at the beach, beside or on the river ( we had a power boat for a while) camping under the stars. We often took a picnic meal somewhere pleasant, somewhere in the path of a cool breeze, after Ray came home from work and stayed out till the first stars appeared in a clear summer sky. Now it means : "how will we get through today?" The heat can mean Ray's sugar is out of whack, he feels clammy and his general attitude is grumpy. It is hard to be cheerful when you don't sleep well. He complains that food tastes strange and just eating hot food is unpleasant. It is okay to spend time on the verandah but mid-afternoon, if he is still awake, he has to come inside as he feels the radiant heat from the sun then. And he is no longer an outdoorsy beach person. He would rather sit in his comfy chair than on a bench near the beach. So things get a bit fraught as neither of us are in a good mood and I find simple chores take longer. Gardening, usually my relaxation past-time becomes futile as the spring plants wilt and die under the onslaught of the first really hot days and the weeds grow so fast that the mowing man often comes fortnightly instead of every three weeks to keep it all under control. Nothing like looking out at all those weeds where your spring plants once were and thinking that as soon as it cools down, if it ever does, there is that task ahead of you. It makes you feel like putting the whole lot under concrete and pavers. But we finally make it through. The Daycare bus came this morning and the cheerful crew loaded Ray an board and off he went, he will be back at 2.30pm but he will go straight to bed as being out and about again really tires him out. And next weekend our grandchildren from up north will be here with their parents and our focus will be on them. Spare a thought for friends ringing in and saying: "I thought I'd ring up and find out how you went over Christamas. Seems a while since I've spoken to you and so..." Yippee, we finally made it throught the Christmas season and back to the safety island of routine again.

I was a telephone counsellor for eight years and met a lot of brave people who had had a rough life but had reached out for help and were re-building. Like you some of them had to stand four sqaure in front of professionals and tell it like it was. One lady told me she felt like every time she did it she reclaimed something she had lost - the right to be her true self. Glad Joey has passed another step back to wholeness. I agree with Bonnie, you are dealing with all this with such dignity so here is a (((((HUG))) from me too. Katy may come closer to sobriety herself this time if she sticks with the program. Hang in there. There is a lot of hope building up here. Sue.

Ray was given scales to sing as an exercise when he had the major strokes and re-learned to talk. He sings along with the songs in church, mostly monotone and mostly half a line behind any one else but who cares? he looks happy doing it. Ray doesn't have depth perception either so has to be real careful walking down steps as he does it by "feeling" with the back of his leg. He of course also has some dementia now so is losing his memories. It's sad that some stroke survivors just get hit by other disabilities as well. As if they don't have enough to cope with. Great to see you blogging. I find writing it all down does somehow help to sort out problems and difficulties. Sue.

We've all seen those movies where the dispatch rider comes onto the scene covered in blood from an arrow wound, gun shot blast etc. That happened here during chat. I was talking to six or more nice people when in comes Ray blood streaming from his arm, across his shirt, down his shorts. That's blood thinners for you, one small knock and it is a blood-stained version of Niagara Falls. I said "be right back" and took a moment or two to staunch the flow, put on a bandaid etc, a few minutes later he was back, small nick below the first aided spot had started another flow! PLEEEZE! the cure is sometimes worse than the disease. All in all a good day though. I finally had a message back from my daughter saying they had only had to deviate once to get around the flooded part of south east Queensland, stopping in Gin Gin instead of Gympie for the night. Now they have picked up Craig's widowed Mum and are taking her with them down to their holiday cottage on the plains of the Snowy Mountains. She will get a change of scenery, some time with her much loved grandchildren and a fresh look at life when she gets back home. We will get to see them after 18th January for a few days. I also had a visit this afternoon from a lady who is one-of-a-kind. At 93 she still has an extensive list of people she visits on behalf of the church. Despite having left the old church we are still on her list so today she brought me some strawberries, an offer to look after Ray "whenever I need it" and her best wishes for the new year. I honestly think there aren't any others like her outside of that generation and when they are gone the world will be a poorer place for their passing. I sometimes wonder where my friends went. When Ray had the major strokes in 1999 we were still working, still in the midst of life, our social network was vast and included many people. I guess, being naive, I thought of them all under the heading of "our friends". Now I know they were just mostly circumstantial acquaintances, work colleagues etc. They were never going to be there for the long haul but I didn't expect them to drop away so fast. Now eight years later I bump into one or two of them occassionally at the shopping centre. They pause with a somewhat panicky look on their faces, have a few minutes of talk and are off quickly, issuing a promise to phone soon and arrange a meeting etc. We all know that is not going to happen , don't we? However we still have a handful of people who like us, are willing to be seen with us etc. They provide a wonderful support network, even if not here all the time when they call I am always pleased. We went out with some of our old church friends yesterday for lunch, just ten of us sat and chatted for a couple of hours. Nothing like that feeling of being with old friends is there? And in some cases as they get frailer it will soon be me visting them in their hostel, nursing home etc. You don't desert those who have been good to you over a long period of time. It may be that we will make other younger friends, or we may not. Who knows what the future will bring? Thanks to all who came to chat today...not a caregiver among them. I do wonder if there is a better time for caregiver chat? But with all our different time zones and all the varied routines that caregivers have, some working, some commuting, some just simply snowed under by the everyday stress of life, we would probably never be able to all get together anyway. I enjoy chat no matter who comes through the "door". And I found out why I didn't hear you all come in. My speakers were turned off. Such a simple thing to disrupt the day eh? So so long, goodbye, see you soon, night , bye for now, toodle loo. It is always good to see you. Remember to drop by next week. Same room, same time, same good time to be had by all. We may not all be blood kin but we are all joined together by this stroke journey we are all on. .