swilkinson

I've been following the thread expressing the difficulties of living with invisible deficits and now Stu's new thread of wishing that you weren't carrying visible deficits that cause some embarrassment and make you the butt of awkward comments. Frankly I wish none of this had happened at all. Ok, ok, I would have missed out on you all as friends and supporters, I would have still been working and living in my own small revolving sphere but somedays I'd trade it all for ONE NORMAL DAY!!! I guess my blogs of late have sometimes expressed crudely how I feel about some of the new deficits that are appearing as a result of Ray's mixture of stroke damage and dementia. The BM problem is not going to go away so I just have to get used to it. But now there is the return of another old problem - left side peripheral vision loss is causing bumps and falls. So Ray is often bleeding from scrapes on his left side arm or leg as he continues to lean to the left and bump himself again door frames, projecting shelves, table corners etc. This also means I must walk close to his side again, not just walk off and do my own thing. This time I took the groceries in to the house while Ray was walking along the back patio and he had another fall. He needs me back walking close beside him. I need to walk a little bit behind, a little to the left. The future looks none too bright some days so after a few discussions with friends which always seems to end in them saying: "I think it is time for you to place Ray now." I have decided to shut up and just keep doing what I am doing for as long as I can. I tried to book some respite today but the place Ray usually goes is booked until December. I don't want to book him in somewhere else but may have to if I find my frustration, stress, anxiety on his behalf etc is building up to the dangerous level. It is my fault because last week I was supposed to get back to the co-ordinator about two weeks respite for him in September but didn't because I had other things on my mind. Mea Culpa! The family came on Sunday for lunch. We'd picked up Tori on Saturday for her promised "sleepover at Granmas" for the school holiday break and as it was the last weekend thought we had better make good our promise. She is a delight to have. She works on a program in her mind and sentences start: "For my next thing Granma..." and so Saturday slipped by with no trouble. Sunday she came to Sunday school and was the sole pupil. So she got a lot of attention from the super and me as I was the "helper" this week. She was attentive and asked the sensible questions so I was pleased she had been there. Basically her parents are not religious but they know we are and makes the concession that she can go to Sunday school while she is here, which she loves. Even though she was the only pupil we did the full lesson, read the reading, told the story, did the art work as an illustration. She did it all, asking the right questions as she went. Then at the end of the service we went into the church. The minister always asks the Sunday School kids to come up and tell the congregation what they had done. Tori was ready, she knew the story and the teaching from it. So up on the platform she went. The minister asked her a couple of questions but she became tongue-tied, all she could do was look at him with saucer eyes and nod or shake her head. It was a classic appearance. Luckily he took it with good humour and said to the congregation: "I guess we'll just have to take her word for it , she seems to know what she did." The congregation chuckled and clapped and back she came to me very proud of what she had done. It is good when our shortcomings are treated with kindness, I wish it was that way everywhere. I wish... all kinds of things. I wish Ray and I could have our planned retirement, the trip around Australia in the camper, those other overseas holidays we had planned. Ray without the strokes would have been kept busy helping the kids renovate their homes, he was always a Mr. Fixit. I would have had more time for the community work I always did both in the church and in the secular comittees and organizations I belonged to. With a full superannuation pension we would have had plenty of money to live with moderate luxury. No more scrimping and scraping to get the things we needed. But wishing won't make it so. We have to live with the realities, in my case of Ray's slowly deteriorating abilities and my increasing involvement in his care. I still think we live a worthwhile life, I just think it is mighty different from the one we had planned. And that is a way forward for us in a way. I was listening to an interview with a man who had, in his middle years, become an alcoholic. He eventually dried out and became a mentor for alcoholics. He said he had to go through the experience in order to be of use to a lot of people, people he would never have helped if he hadn't gone through the experience of being an alcoholic himself. I can understand that. We, caregivers and survivors on this site, have by our experiences, earned the right to speak of them. In doing this we can hold out our hands to people we would not otherwise have had contact with. We can in this way elevate the experiences to worthwhile life lessons. I guess I will never stop making my wishes but I will know that is all that they are and that no amount of invested time will make them any more real. I have to move forward, day-by-day, week-by-week, month-by-month etc I have to live this life I have been given. I can do it with a good will or a poor me attitude. I can do my best or turn over my responsibilities to others. It is my choice. So tomorrow, as today, I will once again choose to look after Ray.

In the midst of the tragedy, ever the clown Sherri. OOOPS! Sue.

I love that phrase " a little home of my own" and hope that it works out for you. There is a lot of support in your church by the sound of it and that will quickly turn any house you get into a home. Sad that going back to your husband didn't work out but sometimes it is like that. Now you just have to do the things YOU want to do and gardening in a raised garden bed sounds great. Imagine fresh veggies and herbs just waiting to be picked..usually with me I have to beat an number of insects to the crop though...lol. Stay a while now and be a part of our blog community. (((Hugs))) from Sue.

Things are changing in our house again. Ray has gone from occassional incontinence to frequent incontinence in a matter of weeks. There has been no change of medication, no change of diet or illness to indicate why this has happened. I told the doctor what was happening and he rolled his eyes. He is reluctant to talk about these issues in front of Ray so I will have to make an appointment to go and see him by myself. That will be another way of "losing" my free time - using it to visit the doctor on his behalf. I am a strong woman. I have been an independent, working woman, I have been a mother of three, a homemaker, decison maker, community worker, sometimes all at once. But now I feel as if I am slipping away from the community back into the home as Ray's conditions make more work for me looking after him and I get more and more tired and stressed. Last night we went to our Lions Club dinner, there were the usual reports and a dilemma, our club had been offerd two barbecues to do on the one day. One of our older members stood up and harangued the meeting: "Look at you all, sitting here eating, where are you when there is work to do?...etc , etc. I know Ray and I can't do much now so I wonder if I should still be a part of an organisation I can no longer work and be active in? I'll pay our fees up to the end of the year and then make the decision and hand in our resignations. It is not something I want to do, it is something I have to do. Ray has also begun to have vomitting attacks, nothing major so far, just coughing up the last meal, choking on something crumbly, things like that. Again no real reason, just not handling eating in the same way as before. This is exacerbated by the fact that he hoards food and eats it in the bedroom. This is mostly food he has pocketted from the sweets dishes at Daycare. This morning I found a coughed up chocolate bar under the bed in an old icecream container put there for emergencies. I am presuming he did that yesterday afternoon when he went in for his nap. Hiding food is one of the features of dementia. While I was hosting chat this morning I heard a rattling in the kitchen and Ray was spilling a bottle of fizzy drink, luckily in the sink, as he was trying to fill a glass. It was a drink belonging to our son, not the diet drink which is always available for Ray. I am sure he knows the difference but maybe the dementia is clouding those issues too and the nearest bottle rather than the appropriate bottle is what he wants. He also took his night tablets at lunchtime instead of his lunchtime tablets which I had put on the table for him. He had the other container in in his pocket! My fault as I often keep them on top of a cabinet near the dining table, I guess I will find another place for them now. This is not a litany of Ray's faults and failings, it is a list of the things that are altering and changing the way I will have to function in relationship to him. I will now have to go through his pockets on the night of the Daycare session so I can remove whatever he has brought home. I have tried asking them not to give out sweets as prizes for "Bingo" etc but they don't want to do that for the sake of the others who can still enjoy sugary treats. I understand that but it does make life harder for me. I hate rifling through his pockets, it is against all those "privacy issues" laws I was taught when I worked as a pubic servant. Ray is taking up more of my time with doing laundry, cleaning etc. I am preparing foods more carefully and socialising, eating out, getting takeway etc seems less usual. I guess I would seem to be whingeing if I told my friends that going to an afternoon tea for a 90 year old is less fascinating and fulfilling than holidaying in Vanuatu or going on a Mediterranean cruise as they are? What did I do in a past life to be living the life I am now...I want to cry, scream, tear out my hair, cover myself with ashes. In other words I am once again mourning what might have been and not really enjoying life as I am living it now. In the old Testament, the Jewish part of the Bible there are a lot of psalms which I read over and over all about how the Lord resues us from the trouble and strife of life. I hear on tv shows how people respond to a crisis by yelling: "God help me" and in their excitement at a piece of great news will say"Oh my G-d" over and over as a means of expressing surprise and gratitude. And yet in my times of crisis I just don't know who to call out to, feeling in a way it belittles the God I believe in to call on him in this way. Where is my protector, comforter etc? That was once Ray, the person I am usually cleaning up after or hauling up off the ground. I dare not call out: "Mother" as some do having in my mind the mindless little old woman I visit on Mondays and Fridays. It is pitiful to think of her as my helper. For the caregiver there is often no-one to call on, no-one to come to her aid. It can be a very lonely existence.

Sharon, I just re read all of your blogs and I think the main problem is that you are just drifting through life. You seem okay, working, visiting Mickey, coming home BUT if you re read your July 4th entry you will see it is a hollow existence. This is partly because your main focus seems to be holding on to a hope that Mickey will "one day" come home and until that day you don't have anything planned. So my advice is to list weekends, say for the next six weeks. Find out what is happening in your local area, match the dates to the weekends. Now, start writing: Saturday 19th, pick up flowers at local markets, Saturday 26th take a picnic lunch to .....Park, Saturday 2nd August, have a massage. You get to fill in the blanks, this is just my ideas. I call this rebuilding your life. You and a lot of other caregivers are like widows, but you have a living husband. Like widows you have to do things for yourself and on your own. There are very few people who will understand this I know but bear with me here. You cannot move on in your life, Mickey still needs you and you need him, but you need to move FORWARD in your life and that means doing some new activities or renewing your committment to some old ones. A lot of women have to face what you are facing after a divorce and this is part of the advice I gave when I was a Lifeline counsellor. Just start rebuilding your life one event at a time. Renew an acquaintanceship, do a course on something that interests you, start a garden, scrapbook your photos, join a new fitness class. Plan your life a few weeks ahead with a view to including some new interests in it. I know your time is scarce but as you found on 4th July there are spaces that you could fill up with something new. Think about what you will do on the next "long weekend". If your family cannot support you put it down to a lack of character on their part. My sister was estranged from my parents and I for fourteen years, but life still went on and we lived, laughed and loved life without her. Her loss. It is sad but true that a lot of family members fail to step up to be supportive when they are needed. It becomes less of a problem as time goes by. Now when my sister does call or visit I treat her as if she were a casual acquaintance. I always treat her with courtesy but I don't feel that closeness I once felt. I know that she is shallow in her affections and that is just a trait she has and nothing I say or do will change that. I hope with some planning your tomorrows will be better. You will find in time with or without Mickey coming home that you can still have a full and satisfying life. (((Hugs))) from Sue.

I've had trouble with Ray not doing the exercises over the years and at that stage he has always gone backwards. I am afraid it is a "man thing" as far as he is concerned with the "women" being his wife or female PTs all making him work when he just wants to take it easy. What I have found is that he will work well for men so maybe a male physio might make a difference. Somehow in front of another man Ray wants to show he can do the work. This is why I wanted a male shower nurse as Jeff or Len (whichever it is) also do half an hour's exercises with Ray once he is showered. I think you are right that he is using this to regain a feeling of control, what he is not taking into consideration is how lack of mobility will limit his life. Maybe you should approach it from that angle. Maybe ask him how he sees the future and if he is willing to put some goals into place to get to a future that includes travel etc and is closer to the life the two of you had planned. I think if it is just stubborness then he needs some counselling or motivational coaching if that is possible. If not I would try to think of someone who he has considered a mentor or motivator in the past and see if they can help in this situation. Sue.

Well, winter took it's time coming this year and we were all congratulating ourselves on another mild winter. But now the winds are blowing steadily from the south and the snow is falling on the Snowy Mountains and the Australian Alps and winter is well and truly here. Here I sit at my computer at the back of our house and it feels as if there is an inside frost. We only heat the front "living area" so it is quite cold here and I sit late at night wrapped up in a rug looking like a rainbow and feeling like a rabbit but at least I don't get too cold. The days are cold too and windy as well. Ray and I have had several good days and it has seemed much better than last week when we had some bad ones. He has had three mornings in a row when he has been continent and so my early morning moods have been much better and my temper much sweeter. I wish I could come to terms with the incontinence and it would feel "okay" to be down on my knees scrubbing carpets and floors. I don't know what makes that clean-up seems so bad. I have to find a way of changing the way I view it so I can be at peace with it. I know others here are able to do it and keep their sense of humour so I should be able to also. I have been reading on a few dementia sites as they seem to have a lot of information on the behavioural problems we face from time to time. I am glad Ray is not capable of violence at the level some survivors and dementia sufferers seem to exhibit. If he says cuss words it is mostly under his breath and he doesn't often yell at me. I know when he does it is out of frustration and that saying: " you always hurt the one you love" is often used as a justification, but I don't like that side of the disease. We all know how much more we can achieve in life if the person we are working with or alongside is co-operative, friendly and helpful and the same applies in marriage. I don't think I could stand it if Ray was constantly yelling abuse. I would just want to get as far away from him as possible. We have been quite sociable this week. Yesterday we visited a cousin of Ray's and had lunch with her. Her husband was at a meeting and when he came home seemed a little uncomfortable at first. But he is a storyteller and was soon remembering some of the good times we had shared and re-iterating that part of our history and Ray seemed to enjoy that very much. Ray even added a bit of extra information to one of the stories which surprised me. I guess with some prompting he could probably remember more information. It is partly that kind of response we all have when we see an old classmate or workmate and do that reminescing that mainly involves remembering a conbination of a specific time, place and action. I am always glad when someone takes time to involve Ray in a conversation. Today we had other old friends call in. I had left a voice message for them about the anniversary party so they dropped in this morning bringing photos of their grandson and some other family photos to share with us. I have known both these people since before I was married so it is good to rekindle some of those warm memories. I know people are busy living their own lives, I know they have parents and children and grandchildren to take care of and worry about but I am glad and grateful when they can share some time with us. I have just extended the invitation to our party to the members of the Stroke group WAGS that we belong to. I initially invited two members and their husbands. One asked me if I had extended the invitation to the whole group so I thought "why not?" after all they are like us and probably don't get as many invitations to go out as they used to. It means making more sandwiches and buying more soft drinks maybe but a dozen or so more will not make a huge difference, and as some of the people I expected would come have already tendered their apologies I think the others may take their place. And what is wrong with that? This is a lot like our wedding. Ray and I each had a packet of invitations to invite our side of the family. Unbeknown to my parents and I Ray bought a second packet and continued to write invitations to more and more distant cousins. That explains why we were to invite 100 people and had 130 accept our kind invitation! Luckily it was a buffet meal and that tends to stretch much further than a formal sit-down dinner would have done. Now we are inviting some of those who were at our wedding to join us again and have added some more recent acquaintances too. A good way to move forward into the future for us as a couple. 40 years, that is a loooong time to be married eh? Tomorrow is my "day off", a minder in the morning, Scallywags in the afternoon for Ray. It is also the day my friend gets her final verdict on her cancer diagnosis and then next week she gets the suggestions of treatment for her to make the final decisions about. I went to see her early on this morning. We had a few laughs, maybe because at this stage she needs to see the funny side of life, to balance out the lost, lonely feelings she has as she faces this new challenge in her life. Life is such a mixture of happy and sad, good and bad, isn't it?

I always envied those big families whose family reunions had close to 100 people gather together once a year. My immigrant family of four people eventually grew as I have three kids and my sistre has four but somehow we rarely get togetehr. My sister and her family do get together in Spring for an annual photo and Ray and I have been to their gatherings but never with our kids and their familes at the same time. Our family gets together every second January so far. At least the little cousins see the fleshed out version of people they otherwise just see in photos. Family members with behavioural probems is a whole other subject and I don't have any advice to offer you. Nice to see you back blogging again. Sue.

Yep. (((Hugs))) from Sue.

I've been a bit down this week. Of course I have had a cold in the nose and that is a miserable feeling. I have tried taking remedies like head-ache meds to see if that helps but whatever I try wears off after a few hours and I go on feeling like a rhinoseros. The weather has been colder as we go into the middle of winter. It looks fine and sunny but there is that nasty undercurrent of colder air. I have all the doors and windows open today though as the house was getting a musty smell and I thought I would give it a good airing while it is not actually raining. Not that we have had a lot of rain, just cloudy days and some drizzle. Not enough to make hay with. But the good news for down south is that there has been snow, so all who can afford to take their kids to see snow these winter school holidays are no doubt down there now building snowmen and having snow ball fights. While most of the country is still in drought. My little friend who I take to church and craft has been undergoing tests and has been diagnosed with pancreatic cancer. She still has some more tests to do. She doesn't have a family of her own but has many nieces she has helped raise so they are rallying around her. I have also helped her keep some of her appointments. It is hard to see someone you like going through this pain and suffering. I guess we all have had cancer touch family and friends and so that is why we pass on the emails with the burning candle, put money in boxes for cancer research charities etc. Still leaves you with that helpless feeling though, doesn't it? I haven't had many replies to my invitation to our afternoon tea for our wedding anniversary on 26th July. I haven't sent out formal invitations, but I have sent out some emails and rang a few people, most of them say they will get back to me. I thought I'd celebrate our 40th as who knows if we will make our 50th? And if we do maybe our kids will throw us another party then, who knows? In the meantime I hope we get some replies in the positive so we don't have to have a food fight with all the left over food. I know Trevor is planning on a few special things and I have organised a cake so who wants some? There seem to be a lot of bad news stories in the papers of late. I know we've had concerns about rising fuel costs, falling stock markets and global warming but these are all things we know are going to happen from time to time. The price of fossil fuel will double, treble etc and we will all learn to live with it or go back to walking everywhere and having a brick chimney stack on top of our homes again. We, the human race, have done a lot of living over many centuries and are not about to leave Planet Earth. I, for one, will not use the car more than I have to if prices get much higher, but we have to do some things, like keep medical appointments, and I guess we will budget for those extra prices, won't we? I am trying to concentrate on the good things in life. I am blessed to have a roof over my head and food on the table. Ray may have disabilities but to date they have been manageable. I have minor health issues but compared to a lot of people I am superwoman. That is on my good days.....lol. So not a lot to complain about. But some days I get on my pity pot and stay there for a while doing the "poor me" chorus. Not an attractive sight I guess, so I will try not to do it, and if I do do it sometimes I will cut the episode as short as I can. Blessing no 2..... So roll on summer. Enjoy yours, you northern folk, your winter will come soon enough.

Leah, your mom might be an RN but she hasn't had experience of what happens to a stroke survivor long term. Ray had his first stroke in 1990, after six months he went back to work and everyone said he had "got everything back" but it was not so. He would walk in from work, drop into an armchair, sleep till dinner was on the table, eat dinner and go off to bed. On weekends he would get up late, do a couple of hours work in the yard and sleep the rest of the time. No-one told me this was NORMAL as a residual from a stroke. No-one goes back to what they were and fatigue is a major problem as a post-stroke deficit. Try to get into a routine as much as you can with housework, family etc. Ask your husband to cut you some slack. Tell the kids :"Mom is tired now and we'll do whatever later." You are a survivor, you do not have the energy levels you did pre-stroke. You might build up more energy as you continue to heal but for now you need to be guided by your body and rest when you need to. When you feel as if you are about to blow up call some time out, go for a walk, look at a magazine, do whatever usually relaxes you. If hubby complains tell him this is your time and he can always do whatever he wants you to do himself. It is long term survival that counts and you need to make short term goals now to make sure you go on to lead a long and happy life. (((Hugs))) from Sue.

Hi spyglass, I'm a fellow caregiver, Sue, caregiver to Ray who had strokes in 1990 (went back to work six months after that one) 1999 (x2) those retired us, me to look after him, 2001, 2005. Like Deloris Ray has some cognitive non-functions, described here as vascular dementia, not a lot of memory, long term or short term now but some days he seems to be able to remeber, other days not. Like you we just do day-to-day but I do have a framwework for our days and weeks and I do make a big effort to keep up with social and church happenings and the couple of other groups we belong to. Ray is 65 and needs to do what people of his age normally do, as long as I am able to enable him to do that. Caregiving is a hard, stressful, often frustrating sometimes thankless job but it is the working out of that expression "till death us do part" and a way of showing your love for your partner in a unique and special way. Welcome to blogging, I have had a blog here for over two years (Sue's Sentiment) and reading back over the blogs give me a lot of insight into where we have been, what we have done etc. All we can do is do our best. Sue.

Ken, winter has arrived here on the Central Coast too. A very chilly unpleasant day it was. Congratulations on your achievements in water therapy and on the treadmill. I've got to give you credit for a lot of effort. I am glad it is starting to pay off and should result in you being able to walk independently. Nothing like movement you can control to make you feel like you've made it. We make a great effort here to keep Ray on his feet and today he was able to go with the other Scallywags to a local R.S.L Club where they played snooker. First time he has done that for ages. I hope this is a sign that you are going to make further progress my friend. Sue.

Jean, I often use you blogs on 360, blogspot and what you've published at Associated Content as my pre-bedtime reading. I have had a sad day today as I took a dear friend out who has cancer, with both of us trying to be brave and forget that situation for a while. I was okay when I was with her but not so okay afterwards. So I read a few of your blogs and was struck once again by one entitled "The Long, Hard Road to Happiness". I wish you'd republish it here so a few of the newbie caregivers and survivors could read it. I appreciate all you write and some things resonate with me more than others. I also read "I miss Dancing". Amen to that! Sue.

Jean, I always enjoy your blogs. Very insightful. Sue.

Gary, good to see you relating that Kyle is such a brave survivor, and that his family, and all who know of him are cheering him on. I think the whole thing about Dr Jill is that she had "A" stroke. Some folk here have had a series of strokes and that is a whole differnt thing, as is a stroke plus other illness. There is a whole different aproach needed to PT, OT etc with the second, third, fourth etc stroke and even with a lot of hard work sometimes only partial recovery. And as we all know a severe stroke may lead to death, either right away or within twelve months or so. Ray "recovered" fully from his first stroke in 1990, it took six months of PT and a restructured approach to the work he did to get him back to work, but he was driving after two months and really ready to live life to the full again after six. He was left with anaesthesia down the left side and the fatigue that MOST recovered stroke survivors still have. After strokes 2 and 3, which happened four weeks apart in April and May 1999 there was NO WAY he was going to make a full recovery, the damage to his brain in depth and area was too great for that. So when Dr Jill says she had a stroke we need to know how widespread and how deep into the brain the damage was, in what area etc. We need to know how much therapy she had. It is insulting in a way to boast about one person's recovery in front of people whose strokes, being much more severe, have left them with visible, restricting, permanent limitations. My two cents worth. Sue.

Fred, anything is worth a try. Are there any trainers at the military gym who might be willing to work with you on simple gentle exercises? there must be a lot of ex-miltary personnel like you who have had strokes or are dealing with arthritus who would benefit from a series of gentle exercises. There is also water therapy as some people on here like Marty do. Ray has a booklet of exercises, standing and sitting and the shower nurse works with him on those. It is hard to know what the requirement is for some assistance. I know here there are waiting lists for everything you need to get assistance with. Nuisance eh? Sue.

I am thinking of lining up for the Olympics in a new sport called "Clean up". This morning , Monday morning, is Daycare. The community bus picks Ray up at 9.20am. At 9 0'clock he was ready to go out to the verandah to sit in the sun and wait for them. I went on doing the laundry. A few minutes later I thought I heard a door close but thought no more of it until I heard Ray call: "Suuuuue" . Yep, clean up time and only eight minutes to go until the bus is outside our door. I won't go into the details but I reckon it was like one of those cartoons where you only see a blur as I cleaned him up, put clean clothes on him and just had him back on the verandah when the bus pulled in. If there was a gold medal for the event I would have got it easily. Apart from that life is good, the weather seems a bit milder so the laundry comes in sun-dried again. I prefer that to putting it into a dryer. The environmentalists have calculated the cost of drying a load at 85c so I must have saved a small fortune over time by letting the sun do the job for me. And with Ray's "accidents" I do a heap of washing every week now. I am aware now of course that I use Depends on him and that is an environmental hazard too but haven't thought of any way out of that. Some things you just have to do. I was able to spend some time in the garden over the weekend too, potting up, which means taking the plant out of a small pot and putting it in the next size up and adding some more soil to give it's roots more room and allowing it room to grow. As it is mild weather it is okay to do that now. I will reap the benefits in Spring. I have a heap of bromiliads to split up and repot and will keep some and give some away. I have three nice varieties and they all bloomed prolifically this autumn. I have an orchid just blooming which is odd as it should bloom in September. I am not good at raising orchids so think this is one that I got from an old friend who is a real green fingers. Anyway it is nice that it has decided to bloom. I brought it down closer to the house so I can see it and appreciate it. This time last year I was complaining about the cold. It is cold of a night but the days have been warmer for the last three days. It makes all the difference when you can go out in the sun and just feel the wamth on your back. The tree feller comes tomorrow to take the half-fallen tree down, grind it up and take it away. I am sad at losing a tree. I planted three of them in 1986, all too close together of course and in a position where we now need the sun to shine on our clothes line. But the birds that use the tree, the owls and bats at night, the shade it provided and just the pleasure of hearing the wind rustle in the treetop has given me so much pleasure. So sad to see you go, tree. The gardening is hard work. I need to redig a lot of the garden at the back of the block but that means moving the gardens and I don't have the energy for it this winter. The alternative is to dig out old long legged geraniums and clumps of tuber bells and take some cutting off the geraniums and plant the bells down the side of the house to brighten up the garden there when they bloom at Christmas time. Then I need to find some alternative plants to fill in the gaps up the back. One of the nice things about that is suddenly noticing that something new is flowering and see how that alters the outlook. It is special to be able to have even a little bit of garden around you when some people live in high rise and have no connection to the soil at all. We have a lot of bird noises as birds are pairing up already for the spring nestings. A lot of our birds stay as we have a mild winter here. They find shelter on the heathland that comes up from the cliffs the other side of the hill behind us. On a good day I used to take a walk up there and watch the birds fly out of the scrub and out over the sea before circling inland to find insects or flowers to feed on. It is amazing how much wild life there is right under our noses. And it just takes a few minutes of standing still and quiet to see any number of interesting interactions between the world of nature and the world of human suburban living taking place. And of course if I am really lucky I can drive by the beach and maybe sit a spell and enjoy watching wave after wave come into the shore. It is another way of widening my horizon and putting my troubles back into perspective. Like each tiny drop of water that makes a wave, each person here is connected to others to form a human chain, part of the Earth family, part of a larger planetary system, in a larger universe. Makes our troubles seem small and insignificant, eh?

Sharon, surprisingly enough this is not an uncommon story. I think it is easy to "pick a fight" with someone and then use that as an excuse for not helping out, supporting them etc. BUT it is true we caregivers are extra sensitive and because of all that is on our minds sometimes can't make the effort to keep up with family. And that includes listening to their troubles instead of telling them ours, which of course is what we USED to do. When Ray was well I never asked anyone for anything, Ray and I were always the ones helping out. After he had the strokes and it was obvious he wasn't going to have the instant cure most of the family on his side abandoned ship. BUT we have been blessed by a lot of people I wouldn't have thought of as friends until they stepped out and helped us out. There are a lot of good people out there and you will connect with some of them when you get into more of a routine and have the time to look around you again. You are moving on with your life, you have joined a group (Strokenet) you are helping others in blogging and chatting. Tell your mother that "when I talk to Sue, she says" and then tell her because of joining Strokenet you now have friends from all over the world, not just the next suburb over. This really is a support group in every sense of the word. Hope things get better for you soon. Sue.

Sharon, welcome to the theurapeutic world of blogging. It is a safe place to put out those feelings that you don't want to tell your neighbours or any but your close friends. It is a place to share with other caregivers the struggle you go through to live as normal a life as possible. There are a lot of blogs here on all kinds of subjects, from the light-hearted to the down-to-earth. You will learn a lot from reading some of the others blogs as well. Blogworld is is like a small family as we are all well-wishers and support each other here. I am sure blogging about your daily life with Mickey and what you and he do togther will help to put it all into perspective. (((Hugs))) from Sue.

Sharon, I am so sorry you have come to this realisation but it it reality for a lot of couples post-stroke. The survivors with self-manageable deficits can learn to live alone, the survivors with some deficits including mobility and cognitive problems like Ray manage with a professional carer or a partner looking after them but for some it is a SNF or nursing home that is home to them for the rest of their lives. It is profoundly sad that there is not government funds released to change this situation. Even here where we get a Carer's pension and other benefits people who need 24 hour care still cannot come home. I am glad you are able to spend some quality time with Mickey, that you still have things you can do togetheer. It is another phase of your life now. I am so glad that you are able to see this as a possibilty, and who knows? things may yet take a turn for the better and he may one day be able to go out for the day with you and you will have the opportunity to enjoy some social life together. (((Hugs))) from Sue.

Janine, I have been showering Ray for a while now and never come out of the shower room completely dry, always manage to splash myself somehow. We had the shower room purpose built after Ray broke his pelvis last January and could no longer manage to shower himself. I'm really glad we had it done as the shower cubicle in our old bathroom would have been impossible with both of us in it. I'm happy to know you had a good day together, it is good when you have some ordinary couples time and don't reall HAVE TO do anything. But you do have to catch up with the jobs left undone sooner or later. You'll find this week coming has some extras in it and you may feel pressuered. Just try and turn that feeling off if you can. I'm glad to hear Cecilia is working out. Judy certainly sounds a treasure and I'm pleased she found the way to ease the pressure off you for a while. Sue.

Wow! Wonderful, marvellous, fantastic news! Congratulations and best wishes to the new "family-to-be" and get ready Granma, there is a new little lady coming into the world. I have two grand daughters and three grandsons and consider myself blessed. It is so special to have grandchildren as I know some people don't and I feel really sad for them. My five mean the world to me. Sue.

Fred, to some people your job would seem like heaven, you get all the joys of people spotting and get paid too! I had to smile at the description of some of your customers because our shopping centre is not far from the beach and the young people come there in the same state of half-dressed in summer too. I guess through most of us see the upstairs rather than the downstairs like you do from your scooter height. Must ask Ray what he sees. Or maybe that is why he is always wearing a silly grin? I am jealous of your temperatures with a cold wind blowing off the Snowy Mountains 500 miles away. It would be nice to have a few days of 100 degrees, especially beside a pool with a marguerita in hand. Ah well! I can dream can't I? Sue.

Happy Birthday to you Happy Birthday to you Happy Birthday for yesterday, And a happy year too. Not much of a poet but I do wish you many blessings. At the moment your path to happiness is still in the rocky foothills but if you keep on walking in time you will come to the sunlit valley again. Yep, doctors are there to frustrate us. The idea is to do your research and then stand your ground. If I am paying the fee I am the person calling the shots...right? They don't get paid just for that piece of paper hanging on the wall, they get paid for the practical work they do for you and your survivor. Hold back those tears, look the docotr in the eye and say: "Now you've done the fancy tests what EXACTLY are you going to do about it." If that doesn't work nothing will. I wish I was close enough to give you a hug and share an hour's chat over a cup of coffee. Hope you and Mike have better days ahead. Sue.