swilkinson

Bill, you look happy in all your photos on Facebook. Love those fishing and camping expedition photos, so good for you and family to be able to get out and about in the great outdoors. I am glad you have found happiness again. Sue.

Welcome to the Blog Community Pearls, as you have found out already there are a lot of caring people here. It is interesting as a caregiver to hear a Stroke survivors story from the inside out. My Ray had many strokes and TIAs and then seizures towards the end of his life (he died two years ago) and although I witnessed it all it is hard to know what it felt like to him as he himself could not express that. I wish you well in your recovery and I look forward to reading more about you here. Sue.

Nancy we are all the same, caregivers struggling to make sense of the world we find ourselves in and keeping ourselves and our loved ones safe. Sometimes I wish I could have a "do over" on some of parts of my life but then realise that I could have landed in a worse state through some other twist of fate. I love the people on here and the people in the local Stroke recovery group and knowing all of you came out of Ray having the strokes, so for all the loss we experience there is also some gain.

I only post on here and now on a widowed site. My blog here, with 625 entries has had 3019 comments and 143,202 views. As it can be viewed by anyone who comes on looking for help with stroke information whether they be survivors, caregivers, family and friends I hope some of them have found it helpful. Keep up with the good work Dean, both on Blogspot and on here. I've always appreciated the research you do and the time you put into it. Sue

Katrina, look at how many have viewed your blogs not how many have commented as a lot of people just don't know what to say. My blog is "public' so you don't have to be a member here to view it, so many people read them I think by the title. like they read newspaper headlines,whether they read them and understand them I don't know. I hope you get the help you need. Do you have a photo album or pictures of some of the good times in your life on some other media? In my first year as a widow when my thoughts ran away with me as yours do I sometimes just sat and looked at a photo of our good times and meditated on that day, the feel of the sun, the sound of the sea etc.That kind of meditation works for me. Remember many people are thinking of you, praying for you and you are loved and supported here. Sue.

Nancy, if you read (past tense) my blog right through this is often my theme too. I resented the fact that the golden days of retirement were lost to us. I was 43 when Ray first stroked in 1990 and we lost that vibrant middle age as Ray was tired all the time, he went to work but came home and home was his napping place. We lost dancing as he could no longer do the turns, family time because of the fatigue so I worked, took the kids out, attended the meetings, sorted out what was to happen with our life. Ray was uninterested BUT we did manage to do some travelling as I insisted that was the minimum he had to do.. Then in 1999 he had the major strokes and I gave up EVERYTHING. I did get some of it back when I put him into respite twice a year from 2007 but it was constant little adjustments to keep the peace and keep life on an even keel. And I mourned each loss as you are doing now. It is what it is my friend (((Hugs))).

Rose, it does take as long as it takes but each individual has to face that battle alone and that is why we are here, cheering you on. I am three days away from the second anniversary of Ray's death, 13 years as a caregiver, two years as a widow. I too am here for the support as well as to support others. (((hugs))) from Sue.

It is hard to know how long a person will be in rehabilitation as we all relearn at our own pace. Just keep up with the visiting, take photos in to show her so she feels she is keeping up with family events, praise her for her fortitude and courage as well as her progress. It is the loving little gestures that family and friends make that keep it endurable.

A wise comment on life as usual Asha. Thank you.

I got through the two big sad times Father's Day and what would have been Ray's 72nd birthday. These anniversaries even though I am nearly two years past his death still revive a lot of sad memories as you who have lost loved ones will realise. It is sad to think of the years going by without Ray in my life, after 44 years of marriage and with so many expectations that we would spend a lifetime together. Life goes on. We had so many wet days I thought I might get a message to start collecting animals but today we had our first fully dry day and it was so good. Everywhere I looked there were signs of Spring, fresh growth on plants, birds busy nesting, happy shrieking of the parrots as they land in the trees, such handsome but noisy birds. The back garden is looking good after a week of effort from me and my helper, next door neighbour's friend who is staying with him for a while. It is so nice to work side by side with someone, such a change for me. And we are getting a lot done. It is strange coming up to two years since Ray died. It was also the time my caregiving ended, though of course Mum went on for another couple of months and I still continued to visit her. I went into the unit she was in for a while "Jasmine" for the first time in two years. It was as part of my pastoral care visits to see a lady who had just moved in there. The nurse in charge told me how well I looked, how she would have hardly recognised me etc. I took this as an indication that I had changed for the better though I still feel the pain of all of that and both deaths aged me beyond my years. I think I am coming out of my grief now and seem to be rebuilding my energy. One of the good things that happened to me in the past week was that I had a visit from my daughter. Each year there is a lunch held for officers in the Salvation Army and their parents. I am in the Newcastle area as it is based on where the parent lives not on where the child is posted to. The last one Shirley and I went to was two years ago a few days before Ray died and Shirley and I were both very worried and asked for their prayers. This year we really enjoyed meeting people and getting to know them a bit better. At our table we had a local couple and their son and a woman and her father, both officers being known to Shirley. The food was good and having Shirley for company was great. It happens so infrequently that we can spend some time alone and so it is extra special. Today in the shopping centre I met up with one of my younger son's friend's mothers, Helen and I were once really close, last time I saw her she was with her Mum who it seems died two months ago. She asked me where I had left Ray. I took a deep breath and told her he had died two years ago. Tears filled her eyes and she told me how sorry she was, she said she had been so caught up with looking after her Mum, minding her grandkids etc. I said I used to be the same. It is understandable, friends like her just sometimes drift away from us, their lives filled with other interest and other worries. She said she will make sure she keeps up with me from now on. that is pleasant to hear but does not always happen, I'll leave it a week or so and ring her as I'd like us to be friends again. I find I no longer look for Ray in the house, in the car or out on the verandah, I think I was still doing that as long as six months ago. I can now be here alone. That has taken a long time to happen and I see it as progress, a good thing. I finally do have that time to look after "me" but don't really know how to do that. I don't think I will grow into a selfish person, the church will always see that I have my hands full looking out for others. My family don't need me now but other people, particularly the old, the sick and the caregivers, still do. I am looking forward to the reunion coming up on Saturday night. It is 50 years since as a shy seventeen year old I left school and went out into the big bad world. I never left my home town till Ray joined Fisheries really as we bought a house in the street I had lived in as a teen after a couple of months living with his old landlady. So many things have happened since then of course. I am looking forward to seeing some of my old acquaintances, they are not really friends as we haven't kept in touch. But it will be interesting to see how well they have aged, how many of the "boys" still have hair, how much we have all changed. I wonder how many still have the original wife or husband or if they have had others since then...lol. And of course some will be widows/widowers like me. I may feel a bit like Cinderella I think. I have no rags to riches story, but a story told in the hearts of others is more worthwhile. And that of course, rediscovering who I used to be is another step in my journey. And I will be home by midnight! Luckily I can share all the stories with Shirley as she and Christopher will be having a stopover here on the way back from Cessnock on Sunday night. She and a party from her present church are going there to do a mini rally for Darren the guy I met during my Cessnock weekend a couple of weeks ago. The Spring in the air, the help with the gardening, the resumption of old friendships, and the unanticipated visit of my daughter and grandson, all have lifted my spirits. I feel that is a string of blessings to add to my list of so many.

You need to have a good sense of humour to deal with the incoming therapists with their demands and their need to be number one for the time they are with you. The speech and then the physio is the wrong way around so see if you can get the times reversed. The speechie should stop when your Mum's emotions are affected too, calm her down and then get on with the therapy. Just being emotional will tire your Mum out.. Yes, you do need time to yourself, don't get offended, it is true. The caregiving role is long term and so you need to pace yourself. We all get burnout if we don't and get angry, frustrated, impatient etc, either with the one we care for or those who come in to help.It is easier to see life in perspective when you have time to sit and just breathe for a while.So do take advantage of any time out you are offered.

Katrina blog as often as you like, your blog is an online diary so can be used to jot down your thoughts that you want to share with others. I blog more than once a week from time to time, it depends what is happening in my life. Other people do too. I don't know what to advise you to do. Like you I have a lot of things I would like to do, but with age comes experience and hopefully wisdom so I know some of my hopes and dreams are never going to come true and others only if I work hard to achieve them. I do hope you can see from your list what is feasible and what is not right for you right now..

Hang in there Nancy, as Colleen said new medication takes time, look ahead to next week and think how much better you will feel. In the meantime I will sing you a lullaby....la la la, la la la (go to sleep little one).

Thanks for the update Cagin. Have you used the Thick-it for your grandmother yet? Remember there are foods that can be pureed that contain quite a lot of liquid too , like pureed fruit which can also be added to the yogurt. The job change sounds a little scary but if you think it is the way to go I am sure you will make a success of it. Sue.

Debbie, I was most impressed by the concern of the neighbours, you do live in a good neighbourhood and now should get to know a few of them as you are home more. I was also impressed that you have started the de-clutter already. I did some of that today too, got rid of some metal from up the back and cleared up that part of the lawn area. There is always so much to do. And you make sure you take the time off from it whenever you need to. Glad you are meeting up with Coleen and Ray, post pictures of the meet-up please. Have fun.

Yes, I well remember those first tiny movements that said that something is about to happen to this arm. In the end my Ray could hold his stroke effected left arm down and cup his hand so he could use it to carry something while he had his stick in his good right hand. He could hold his left elbow out from his side which helped with dressing. Even if he could take his coffee mug to the kitchen that was an achievement as far as I was concerned. As your Ray achieves more he will be able to do little things, carry a book under his affected arm, get dressed by himself (my Ray took 20 minutes to do that but who cared?) and sometimes using the affected hand as a paperweight write, draw a picture for the grandchild etc. When the movements start it seems small but as they multiply it is only from work, work, work, new pathways in the brain come from repetitive actions, not like a miracle in the night. Once your Ray can understand that other miracles will happen, Sue.

John you will do a lot of those things again but your Mum will be an observer. It was that way with my husband Ray and I, I worked, he watched. I did make comments and ask him questions about what he thought we should plant, cook eat, etc. I wanted him to feel a part of what living at home entailed. I think we both know what that meant but were too polite, or too sensitive of each other's feelings to say. We just did the best we could to build good memories and make each day worthwhile as I am sure you and your Mum will do too. Sue.

I wish I could say keeping busy helps, sometimes it does but sometimes it fails. Today was Fathers Day. There is no father now and since the kids are all away not even someone else's father to celebrate with. I went to church, I went to lunch, I came home and felt so sad. I had a nap, I woke up, I made my dinner, I felt so sad. I feel bad in so many ways, yes, it is a pity party, no I do not need any help, I just want to have someone back in my life, one of my family to move back here to be close to me. It won't happen that I know but that is what I want. Tomorrow would have been Ray's 72nd birthday, I think I will add the years every year, 73, 74, 75, pathetic I know but what do you do when you have celebrated 45 of them and suddenly they are not going to have any more? I remember the first birthday Ray had after we met, we had not been going together long and he took me to his Mum's place for a celebratory lunch. His sisters were much younger than him, he had an older brother and sister-in-law and a younger brother. I don't have much contact with them now except an occasional phone call but we were close once upon an time. It is strange that we grow apart. More so in our case because three out of four couldn't come to terms with his stroke deficits and then his dementia. I have so many pleasant acquaintances but few close friends. I have never been a best friend person. I always had a handful of good friends I could call on anytime. Some of those dropped away when Ray was diagnosed with dementia. A couple of them tried visiting but his lack of conversation and my need to do so many things for him diminished the bond I guess, it is uncomfortable for some to see such a deterioration in a formerly vibrant and vigorous person and that was Ray prior to his first stroke. I guess I would have been like that too but my mother trained both my sister and myself that we were there to help others not to criticise them. Ray had a similar work ethic to what I had been brought up with. He was a helper too. His skills as a carpenter and a DIY man meant that he was in demand for a cheap fix to all sorts of household problems that his friends and their families had. Usually the phone call was just to ask him to give a hand to someone but he often finished up doing the whole job himself. It is like that if you are handy, the mates love to have you around. But after the strokes of course those mates faded away. Not knowing what to say, not knowing what to do, unable to pay Ray back for all the kindness and help. The rain doesn't help my mood. It has rained every day for the past eight days, not all days, some days it is called sun showers so it is sunny in between and I go into the garden and weed or repot or do some tidying and then down comes the rain again. A wet Spring often means a hot summer so pity the farmers in some of the inland districts where the rain is not falling as they will go back into drought again. What a variety of climates there is in Australia, how wonderful and how heart-breaking is our land. And so the question arises: what to do with Spring? Usually as soon as the fine warmer weather comes it was outdoor activities. Back in the days when Ray was healthy and we still have kids in their twenties it was DIY time, they all seemed to move in Spring, so we moved them, Ray drove the moving van and helped carry the furniture, I unpacked and made meals. Then when the kids were independent, after his first stroke but before the second and third we did some travelling ourselves. I loved to wake up in our old Campervan on a river bank somewhere and hear the birds, and smell the smells of a camping area, the fire smoke and the bacon cooking in a pan. There were some good days. And now there is just me. So camping is out, caravanning is out, overnight stays are done in motel rooms not on river banks. The visits to the kids mean indoor games with the grandkids and not bush walking and swimming in the river or a day at the beach as it did with our kids. Life has sure changed. The grandkids all play electronic games and although Shirley and family do go for walks and picnics the other two families don't do much outdoors at all. A pity with so much to see and do in our vast landscape. I think kids these days miss out on a lot of adventures because of the computer games they play alone, rather than the physical games our kids played where everyone joined in, cricket played in the bush where most of the time was spent finding the ball, paddling an old blown up car tyre tube in the river, digging in the sand, making sand castles and drawing treasure maps in the sand. BBQs were the evening meal and those past long hots summers meant swimming and playing under the hosepipe not putting on the air conditioning. ​Of course I do have opportunities, at the moment there is a lot to do in the church and in the community. I know I could volunteer in either of the nursing homes I have been associated with. But like most events in modern life they are strictly indoor activities. What I really need in my life though is some fun and that is not as easy to find. What do you do for fun when you are aged 60+? There are the Senior Centres some of my friends have recommended, computer classes, Tai Chi, indoor bowls. I'm not sure I really want to learn indoor bowling though my Mum was a keen indoor bowler. and Dad played outdoor (Lawn) bowls for many years. I know I have to continue to build a life of my own. I don't want to forget the past but I do need to come to terms with it. I do need to learn to live a life that is both sustainable and satisfying. I guess it is the day-by-day, one day at a time way as usual.

There always seems to be other things to plague our loved ones apart from the deficits from the stroke. My mother also had a cough, fifty years of smoking before she gave it up when she moved in here. I think a lot of it is ageing too. All you can do with your grandmother now is to keep her as healthy and happy as you can. Sue.

Some times I find it just helps to get it all written down. Then you can see where you can change things. I know that feeling of despair, every time I planned something for myself during Ray's last few years of living here something went wrong, but I think I gained from that the experience of solving problems on the run. Will any employer from the course be told you have those health problems? If so it will be out in the open and you will be able to say: "this is how it is" feeling no embarrassment or as if you have let the team down. Keep on looking forward to good things in your future. (((hugs))) from Sue.

Asha, each new stage is difficult, change we know is inevitable and yet we are never fully prepared for it. My kids came and went, Trevor came back three times and each time enriched our life while he was here and life seemed so quiet and the house seemed empty when he had moved out again. You have done the hard work with your son and I am sure that close bond between you will hold him while he is away and bring him back to you and his father. Sue.

Fred, so sorry you have had this set-back, I will always pray for you and your needs, And you know we will be waiting here when you are able to get back to us. (((hugs))) Sue.

David, good that the neurologist thinks that another stroke is not in the near future, shows you and he are doing well with your lifestyle and medication balance. Good to hear you will be around for a while. Sue.

Hey Rose, wow that is a long time between blogs so welcome back! Yes, recovery can be very long process and with some modern thinking on physiotherapy and new medications even after a long time there can be changes. Some of the people at the Stroke Recovery group Ray and I attended had had strokes as long as 20 years ago and still found something that helped to make small improvements to their lives. So never give up hope. Welcome back, hope to see you continue to blog. Sue.

Nancy, you took some time off and the world didn't end, so it will be easier to do it again next time you need to. One step at a time. You did it and that was the important step you needed to take. I can imagine how exhausted everyone was. I left Ray with my older son just once and he never volunteered to have him again. The younger one as you can read in my blogs was much better at managing Ray. But both saw that that happy smiling figure in the nice blue shirt was an illusion, the real Ray was somewhat different and much harder to handle. Glad you did the trip and made the discoveries you did. Family time will count further down the track but at the normal level rather than special events. You went, you saw, you wondered...lol.