swilkinson

Judy, just enjoy him being with you each day, don't think of yesterday, don't think of tomorrow. It took me a lifetime to learn that and I didn't really act on it until Ray was in the nursing home and I knew all I had was THAT day, tomorrow could be a really bad day.Enjoy your life together, it is so lonely when they are gone. (((hugs))) from Sue.

You did good!!!! Just a little taste of the "old life" brings back so many lovely memories and you sleep with sweet dreams of better days. I used to revisit places with Ray and where we once would have walked the trails we just settled down and picniced but we were THERE!

Debbie, I laughed at the "safety check" but good for them, it may have saved a life. Yes, business studies will be good for your niece, nothing wrong with getting used to the business suit if that will get you a good paying career. You did the job well and got a break from Bruce at the same time.

Katrina, I wish you nothing but the best as do most of the people that post comments on your blog. I know as a caregiver for so many years that most advice is not helpful but sometimes something that I read as unhelpful does help some time down the track. I hope you find that when you reread your older blogs. The seizures seem to be a puzzle even to those who are supposedly specialists in the field. I know with Ray's seizures I could manage to get him conscious where the nurses could not. I know after a seizure all he wanted to do was sleep. I know that seizures don't seem to have a pattern so why he had a seizure on one day and not on another never seemed to have a logical answer. I know some seizure medicationss give you side effects that are really intrusive and make your life a misery. What I DON'T know is how it feels to have a seizure so I wouldn't presume to give you any advice except for general advice, eat well, get enough sleep, exercise as much as you are able to. Apart from that remember we are your friends and will be your supporters for as long as you need us to be. (((hugs))).

I spend a lot of time sitting here at the computer feeling lonely. Well nothing new about that, I've been doing that for the past two years since Ray went into the hospital then the nursing home and more so since he died last September. I am just more lonely now as the truth that he is NEVER coming back bites. He is NEVER coming back. He is not gone for a while, for a week, a month or a year. He is gone FOREVER. In a way it is worse since I came back from England. For one thing there is no-one to tell about the six weeks I was there. I can talk to the kids but 20 minutes and their eyes glaze over. I have just got the photos, Trevor downloaded them for me, and now I can see the trip all over again. I am not a good photographer. I just take photos of things that take my fancy, seem unusual or peak my interest. I also take lots of photos of plants, trees, gardens, individual flowers in the hope that it will inspire me to emulate the great gardens of Enlgand! As if that is going to happen. But at least I have the photos if not the reality. And come Spring I will work on a new plan for the garden. Who said a change is as good as a holiday? Wrong. But it is good to feel in control by making the changes yourself, to your own plan. Loneliness is reality we all have to live with. I can put off the loneliness while I am in company, working in the garden, volunteering, mixing with friends and family but sooner or later I come back home and there it is again. I can go out and visit with our remaining friends, lapping up the company, enjoying the interaction, but sooner or later I have to walk back in the door alone. I know now why people have a houseful of cats or dogs or birds, it is to have someone greet you when you get home. It is so you step into the noise of companionship rather than the silence of aloneness that is so hard to take. It is the season for going around Australia here so a lot of my pleasant acquaintances that I count as friends are still away. We Aussies flee the winter, the blustery days like today. A lot of Australians go off overseas to avoid the desolation of winter. The retired couples go around Australia in their campervans and set up a temporary home in a more tropical climate, coming back about October when it is warm here again. I know there is the telephone but these days when most people have a mobile (cell phone) I am in contact with so few of them. Though I do see their happy camping photos on Facebook. Do I feel envy? Yes I do feel sometimes that life has somehow cheated me of our planned " happy retirement". Once Ray and I would had planned to do that trip as part of our retirement. Now I cannot do it alone. At 66 it is too late to make up for the years Ray and I lost due to his many strokes. It is unrealistic to expect that I can replace them. Even if Ray had lived his invalidity would have prevented that happening. Do I feel robbed? Yes I do. And yet I have so much to be thankful for and I know that somehow I have to lean toward the thankful side to rebalance my life again. My family are busy with their own lives and that is the way it should be. Ray and I went through our married life hardly aware sometimes of the loneliness of our ageing parents. When we lived at a distance I rang once a week, sent letters and cards, we rarely visited them using the excuse that they had each other for company and their own lives to live. I think if I had known how lonely the nest can be once the fledglings have gone I might have been a little more attentive, maybe visited more often. But you cannot live life backwards. What is the solution? Who knows? Maybe there is something in treating others the way you would like to be treated? What is the formula for getting over the death of a spouse? Are there ten step programs to follow? My remaining friends say: "Keep busy". I do keep busy but life is somewhat hollow. I could be the perfect housewife (unlikely in one with a personality like mine), take up good works (costs money to travel out each day to do whatever is considered a good work these days) or take up some new hobbies like music or painting. My Mum painted in her middle years. She wasn't bad at it and I have some of her paintings hanging on my walls. I'm guessing she did it to fill in the time. She also kept a good garden, flowers and vegetables which is probably why I like to keep a garden too. She corresponded with a lot of people, I do emails and Facebook. She belonged to some organisations and made a contribution to them, just as I do in a different way. I guess there is a pattern to life, if we can't find one of our own we follow in our parents footsteps. It is eleven months now since Ray died. I am slowly making the house my own. I am trying to make my life my own. I have a long way to go but at least I am making an attempt at it. I am trying not to dwell on past dreams, what might have been. I try to live in a way that I can be reasonably busy, so that I can handle the loneliness. Some days it is just right at the edge of my mind, my day filled with enough activitiy to hold the loneliness at bay. Other days, like today it is waiting at the bedside so my eyes open and there it is.

Could be worse was part of my philosophy too. Life is doable, just not the way you planned it. And yes, it is a retirement of sorts. I am retired now too, and have to say I do appreciate the leisure time now. Of course without Ray I am very lonely. It is not what we ordered for sure but making the most of what we have is better than bewailing the past.

Thanks Fred for the reminder that recovery is the WORK that survivors need to take seriously and caregivers too. I know from time to time I took the attitude that it was quicker for me to do something than to have Ray do it but then remembered that no matter how long it took it was better for him to do it. Doing something worthwhile, even if it was tying his own shoe laces rather than having me do it was the goal and to increase what he did every day increased his well-being and confidence as well.. There is only so much a caregiver can do to motivate though, the motivation has to come from within.

I just wrote a blog on loneliness and posted it on a widowed site. I don't want to reiterate it here but just want to say that as a widow loneliness is something we do live with every day. (((hugs))).

A lonely way to go George but I think we sometimes choose the time and place.

Welcome to our Blog Community. I made the font size bigger as some of our survivors would have trouble reading the smaller print. Good to have you on board.

Lenny, I always love your blogs. Don't know if your team won but hope you had a great time.

In child-raising there is a thing called "judicious neglect", like risk management it doesn't always work but if they don't try it how do they really know they can't do it?

Katrina, thank you for your honesty. Every time you talk about how you feel about your arm it reminds me to have compassion for others, to try and put myself in their place, to feel what they feel. I hope there are people you meet who make you feel great, who look at you with affection, who share a joke or a smile or a story that says "welcome to my world". If you were here I would hope I could be one of those people. (((hugs)))

Leah, every blogger is missed in this small community of ours. I know you have found it harder in the last few years so I understand when it seems too much effort. You are always in our thoughts. Sue.

After a 27 hour journey and thanks to Pamela who picked me up at the Airport I got home late Thursday night. And as I walked in the door I felt it was MY house. At almost eleven months out is is "my home" now. Of course it is a big change stepping out of a fairly warm English summer back into an Aussie winter but it is only a matter of having extra clothes on for a few weeks and hopefully it will turn into a glorious Spring. And yes, plants died, leaves accumulated, rubbish built up and no-one swept it away but I am GLAD I went. Must teach Trev how to water the garden before the next big trip though. It was scary to do that long plane flight and all those transfers alone, with some uncertainty about transport in Britain. I made some mistakes. One hotel cost almost two hundred British pounds for the night, I had to book it at the last minute when I realised I couldn't get to London to start the bus tour from where I was for a 7am start so I paid top price for a hotel room with tennis at Wimbledon. But I swallowed the cost and knew if I had to pay extra for not thinking about things in advance that was another learning curve. I hated that I could not share my excitement in the build-up to the holiday because it is not safe to share that your home will be empty for five weeks. Gone are those days.But nothing major happened. There was some rain but good temps and 2013 is down as one of the milder winters.I had great weather throughout Britain, the best summer since 2006! I laughed when it was described as a heatwave when I thought it was just warming up nicely! But English houses are not built for hot weather and there was a high humidity factor too that caused som stress. I loved staying with various cousins, overnight or for longer periods of time.I stayed with Jacquie in West Susswex the first week and when I got back from the trip, I have stayed with her twice before so know her routine and when I make myself scarce! It was great once I got though the explanations about the death of my husband Ray, and the death of my dear Mum to simply spend time sharing the stories and catching up on the doings of the family since I last saw them in 1998. Just little things like attending the birthday party of one of Jacquie's grandsons made me feel like family. And that is really important to me since the passing of Mum and Ray - to feel as if I have family out there who have a affection for me. It was good to meet a few cousins that I have been writing to or emailing for years. In one case I only saw them for a couple of hours but it is good to find that is okay, we were still the same people, still friends, still able to communicate on certain levels. And I finally caught up with my Mum's step-brother and his wife, I had never met Jeannette and not seen Gordon since I was seven! But we all enjoyed the experience and that is what counts. The London cousins were the easiest to live with, comfortable homes full of noise with boisterous sons who reminded me of my own and and an anything-goes attitude that is so part of the culture here in Australia. Other cousins were still quite formal and I felt as if I had to mind my manners. Travelling alone is a bit scary, I went on the coach tour and it is definitely a couples world but I became friends with a couple of American widows, one travelling with her daughter and one with her grandchildren and talked to whoever was at my table, Americans, Australians and a few others travelling together. I had a bit of a down day when I reached Ireland as Ray had loved Ireland when we were there together and so much made me remember our love and my loss. Seeing the couples getting into the jaunting cars was the worst experience as last time Ray and I did that "romantic experience" together, so I just walked around the village for a couple of hours instead. The cousins that had offered hospitality made a big difference. I was confident that if anything went wrong I only had to ring one of them and ask for help. Staying in their homes was good, reinforcing our bonds and talking together made us realise we could be friends as well as cousins. I felt we were growing in affection, remembering we are family even though our parents, the original siblings are now all gone. It was well worth the cost to rediscover that. Some of my older cousins asked me to promise to come again soon. I understand that, to learn to love is to prepare for loss and we older ones sensed that. It was so great to look at people and realise we have so much history in common. Although I went to some places Ray and I had been to I also saw Britain through new eyes, through the eyes of "Sue as she is today". It was almost fifteen years since I had been there so time moved on and there were many changes, old buildings and streetscapes replaced by new. I only passed through London but the traffic was horrendous, the sidewalks crowded and the noise was loud and raucous. I was glad I was not driving myself this time and that transport was quicker and easier without Ray's post first stroke slowness to figure into the equation. On the whole I found everyone courteous and willing to help a stranger on her way. I know the journey enabled me to see life from a different perspective, so now there is time to settle back in and plan for the future. There are a lot of things I need to list, need to plan for, need to do. I know that if I take it slowly I will get there in the end. There is no rush, I have the rest of my life to do it. God willing.

Enjoy your company. It sounds like it will be a lot of fun and laughter. I love good food and good company. Ray, like Bruce, got tired really quickly when there was a lot of things happening. And he would act out by getting cross with me and saying mean things. I loved that guy of mine heaps but there were times when I cursed him as well as the stroke.

I have editted it and put it in Arial, hope that is okay. You certainly had some adventures. I hate being ripped off but it did happen to Ray and I once on a similar trip. Guess when you are a long way from home you just pay whatever the mechanic says?

If I hadn't defied the neurologist and flown to Cairns we would hardly have seen our kids and grandkids for those three years they were there and lost those opportunities that made Ray their beloved Pa Ray. Yes, it was hard for me to do it and yes, it was worth it. And he didn't have extra strokes because of the flying. Luckily they were quite happy for Ray to go back to his room and even back to bed as often as he wanted to but his social skills came to the fore and we did make some good memories. He was more placid when we were away than when he was at home. Less recriminations, more smiles....lol.

I am going on a holiday. It is the first time I have been away by myself. The other breaks I have had since Ray went into the hostel and nursing home and since he died have only been down the south coast to stay with my daughter. This is different and I am a little anxious. I'd love to tell you all about it but am paranoid about "security" these days when scammers hack into profiles on Face Book etc. I have had a frantic couple of weeks catching up with all the usual things you do before going on holidays, cleaning, tossing, arranging plant minders, someone to collect the mail etc. My younger son Trev will help out as will a neighbour if there is an emergency. We have had some wild and woolley weather so I need regular checks on the house. After another three day rain event everything is decidedly soggy so I will air what I can and leave the rest. I am a bit afraid of how I will be meeting up with cousins who I haven't seen in years, as we all know people age differently and that can cause some stress. I know in a couple of cases they are not well so I will put on my caregiver cloak and do what I can, if only keep the caregiver company. That is the idea of the catch-up, to see how they all are and see if there is anything I can do for them. Sometimes someone from outside sees things differently and can help give a different viewpoint. Sometimes the person from the outside should keep silent...I will keep that in mind. I am also hoping to have some fun. It has been a long time since I have enjoyed a good deep laugh. It has been easier the past few months to see my life as still viable. For a while, like most widows, I thought the best years were behind me with Ray's passing, but now I do see that it is possible to rebuild your life...painfully slow but possible. I will report in when I get back. **hi**

We have a popular country and western song called :"Looking forward, looking back" by Slim Dusty an Australian icon in the C/W scene , now himself passed away. It was one of Ray's favourite songs so I had it played at the end of Ray's funeral. It is what we did for the whole of his stroke journey, tried to look ahead positively but sometimes slipped into looking back at what we had lost. The strokes, particularly the 1999 two did so much to change our lives and there was no going back to there again. Nancy, like you we missed a lot of events, even got left off the list for a friend's daughters wedding, we had been there from the start with her as I helped her Mum fill in the adoption papers but it was held at a disabled unfriendly venue and our invitation never came. That's life after stroke. Cling to the happier memories and you will survive. You will mourn the farm and the life you had there but I know you will find a place more suited to your needs than where you are now so look forward to that.

And if you don't want to delete everything a friend sends to FB but some posts do offend there is also the "hide" button. I use sometimes with some of my more poiltically aware buddies...lol.

Although Ray had good conversational skills for maybe five years after the 1999 strokes he deteriorated a lot over the period of the next few strokes TIAs etc. I found that I couldn't keep a subject going with him as it would tire him out. If I asked questions he could get irritable and I knew that was because he had no process thinking so could not think in a logical sequence or follow question A to question B to question C. He would answer one question and then glare at me if I asked another. You and Bruce enjoy your time together. I agree with Bruce, it is better to maintain some conversation but also periods of companionable silence for him to catch up after a while. Maybe watch for signs of him getting restless rather than pressing on witha subject that is exhausting him. I am glad Bruce's intellect still shows up in some of the conversations you have, that must be nice. Enjoy your summer.

WAHOOO! Good for you. Glasses held high and a toast: "TO KATRINA....." Well done, very well done indeed.

Oh my dear, my heart too breaks for you. So long a caregiver, so long a lovong wife. Now your man is at peace and a blank life is ahead of you. For now busyness is filling your life, friends are milling around and that is as it should be. People should support you during this sad time. Mary Jo so much to do and then suddenly nothing to do, that was my experience of losing Ray last September. For now let others do what has to be done. Sit, relax, smile at happy memories, weep over sad ones, whatever you feel like doing, do that. Dan is at peace and beyond pain. You need to take care of yourself now , treating yourself as well as you treated him. The period after a death is a hard one so feel free to PM me anytime if you feel I can help. (((hugs))) from Sue.