swilkinson

Fantastic - transport to volunteering = freedom for a while.

Cagin, so sorry to hear you grandmother has taken a downturn in her recovery. It must be so frustrating for her not to be able to express herself. Is her doctor going to give her antidepressants as I know they work well for some people. Because depression is a normal reaction to having a stroke does not mean it should not be treated. The infections could be a result of swallowing difficulties so all her fluids need to be thickened and she has to be taught how to do a double swallow, the speech therapist should do that. I wonder if the speech therapist will also have her singing scales as that certainly helped to strengthen Ray's throat and allowed him to speak more clearly. Thank you for wishing us a Happy St Patrick's Day, my Dad died in 2000 but I still remember it is his birthday. It is for me one of those happy and sad days now. Sue.

Passing your old disability aids on to others is a great idea. I gave a lot of Ray's gear away after he died and the next door neighbour uses the shower bench in our shower room to shower his old father who lives with him so that retains it's usefulness.

Sounds good, out in the fresh (cold) air. In the company of a dog it is amazing what you see.

That is a nice little poem. I had a good day today, same reason, sunny day no pressure. Sorry you are melancholy today, hope tomorrow is good for you.

Judy you do what you have to do, to keep the peace, keep life on an even keel, to lower the stress and to maintain some sort of relationship. Accepting the changes is the hardest thing to do but as time goes on you somehow manage to do that too. Good to have you back. (((hugs))) from Sue.

Fred hope your Spring is bright and sunny and fills the air with the fragrance of flowers and you do get that getaway trip to one of the casinos. Life is too short to be cooped up at home, off you go to make more memories.

Welcome back Debbie. We have missed you.

Life has some strange co-incidences sometimes. I had a wonderful morning out, a walk beside the Lake, went to the movies to see : "The Second Best Exotic marigold Hotel" then did some shopping and finally had lunch in a place we used to go to as a family. I was the only customer and the partner in the business who I have known since he was a teen sat down and told me all his troubles. He is the owner's son and really her caregiver as well as she has had mini strokes. She still works in the kitchen but only at lunchtime which is their slack time. I finished up with his life story. Very interesting that people know who they can confide in. He has some resentment and some regrets. I understand that as I listened to him tell me about "those who won't step up to the plate", he is a baseball player so that phrase was no surprise, and how he feels in a way he has been cheated as he stepped forward when his Dad died and now life is passing him by. So easy to feel like that. I suggested he looks at it as a life choice with it's own rewards, he lives in one of my favourite beauty spots, has a lot of freedom in the middle of the afternoon, has a respectable if not well paid job, is a good son to his mother (important as he is Hong Kong Chinese). And will eventually reap his reward, he is a Christian so believes that. It made me think about my own resentments and regrets. If you are a regular reader of this blog you will know a lot about that, if not pick at random half a dozen or so blogs from the years 2008 - 2011 and you will see a lot of them listed. I regret some of the times I was impatient with Ray, some of the nonsense I listened to from the medical profession, some of the opportunities we missed, some of my own actions when things went wrong and I threw a pity party for one. Of course from that part of my journey I learned strength and patience and a kind of loving kindness towards others that is simply a reflection of what others showed me in the bad times. Now I do try to live without resentments and regrets. It is because I am slowly learning wisdom. Some of that I owe to Asha who has patiently taught me to go with the flow, from Sarah who has a terrific sense of humor despite the fact that she has had life much harder than I have and from Steve Mallory who is a shining example of how a person with faith tries to help others. Building this site was an act of genius and who knows how many people have been saved because of it, myself among thousands of others. I am so grateful that I found this site when I did and so many people have been there to support me and show me such great kindness. I have resented that my children have moved away but I am slowly seeing that this is giving me an opportunity to grow in a new direction. If they were closer maybe I would rely more on them and not on myself. By myself I can work out a new life. I know I cling to the past a little too much and need to "move on" but we all do make our own way through life at our own pace, so that is okay. I need time to work in my favour, smoothing out the edges of my grieving pain , allowing me to go slowly in a new direction, learning to be more independent. I want to change without losing the gains I have made on the stroke journey. Sometimes I ask myself if I need to leave the stroke journey behind now but I think the answer is still "no", I need to keep on supporting others in their journey. I gained so much wisdom on the journey that to turn away from it now would be to put that aside also. I know in my church work and in my daily life I will continue to be able to help others simply because I have been there, done that. I know what it is like to be a full-time caregiver, how time slips by, how tired you get, how frustrated you get, how only people who have gone through the same thing, whatever caused them to become a caregiver, can truly know what you are going through. So I think I still know all of that and can share that and feel empathy for those still engaged in the struggle. Is it still useful for me to be a chat host? Not a lot of people are coming into Caregiver Chat so I don't know that I really need to stay on there. I want to continue on with the Blog Moderator job and will continue to post comments on the forums but because of time restraints I may give up the hosting for now. I think HostSally does an excellent job and maybe someone else with a fresh approach to caregiving could help her to keep the chat going. I will discuss that with some of the other support staff to see what they think. As most of you readers know church work takes up a lot of my time and I really do need more time for friends and family. I need to visit my daughter and her family more as she has mentioned that several times recently in our phone conversations. I haven't been down there for months and of course I also have my two sons and their families to visit too, flying being the best way in both cases. I am reminded that time is short as I found out today that one of the cousins I stayed with in England lost his son to misadventure recently. James was a vibrant young man, full of life which he lived at full speed. Life is short and we need to keep ourselves in touch with the extended family too to live without regrets. My life is not perfect so I am still a work in progress, and I do hope I am progressing and growing in wisdom too. If I am growing in wisdom I have a lot of you to thank. So thank you just for reading this as well as for all your kind comments and ongoing support. (((hugs))) from Sue.

Even if you never get it published it is worth writing a book Asha. I have all my blogs to help me look back at those stroke years and now my widow journey. I don't feel the need to write the book, life does that for me.

No photos, no experience with that as I was a caregiver. I just want to give you a few words of encouragement. Do what you can do to get the message out there that there is life after stroke and you have achieved something special. You have done some of that already and are providing proof of that as you strive towards that goal. Even a little help, like you are giving others on your blog site can give hope of a better future. (((hugs))) from Sue.

Anne, it is not unusual for an extrovert pre-stroke to become completely self-involved after stroke. I can understand this as the body goes into self-protect mode. It is the looking inwards rather than looking outwards that can be so hurtful to the relationship. As someone who lived with that for 12 years as my husband changed in this way I can say you have to become your own cheerleader now. It is possible she cannot offer you sympathy or help any more now. You do learn to live with that and I could even joke about it at times. Welcome to the Blog community. You will find the people here very supportive and as you learn their stories as they learn yours you will feel you are among friends. .

So sorry you have had to have another hospital stay. My Ray had seizures the last year of his life andhad to be hospitalized. Not a good place to be so I am glad you got out as soon as you were well enough. My good wishes and prayers coming your way for a more settled and better life from now on. Sue.

Julie, you have done a mighty task to get Larry where he is and sounds like you have more work ahead of you but if it it worth it you will do it. You are an extra special person to be able to take all of this on. I am glad you are back blogging again and we will look forward to your updates and I hope to see yo back in chat soon. Having the specialists you need in the same place will make life a lot easier for you too so I hope they all stay put for a while. It is good he has the same PT and you have Jim back. I was always pleased when someone Ray knew walked in the door as his aide, no long explanations just a greeting and they got down to the job. Makes life so much easier.

Fred, how kind of you. I am going to England later in the year and I am sure the visit to some of my English cousins will be just what I need. I will come to see you some day, you were one of the first people to make me welcome here and we have really had a journey together in our blog community. I think sometimes it is the loneliness that gets to me but G-d has a plan for all of our lives so we will wait and see what that brings.

I'm so glad you had the trip to Virginia and had that perspective on your life as it is now. Yes there is a brightness about your life that was't here before. Nice you have a kitten for company, takes the edge off coming home to an empty apartment.

Sarah, it is all loops in your learning curve right now. I had the same trouble with the "wait and see" policy whenever I wanted anything for Ray, it always took weeks not days. All those visitors! You did well to cope with all of that but isn't it fun, all that huslte and bustle for a few days? Used to love that as Ray would transform into a social person for a while and we all had fun. I miss all that now. I admire the way you just keep going with the care increasing and all the obstacles you have to overcome. You get my nomination for Caregiver of the Year.

Today I am thinking how nice it would be to have someone to tell me : "there, there, it will all be okay soon." Yesterday was not a good day. I went to a church meeting, did my part of the service, just a reading, didn't stay for morning tea as I was feeling sick, got out of the car in my driveway and I was sick. I was lucky to get out of the car I guess. Was sick on and off for a while and then had a shower and spent most of the day laying down, feeling sad and sorry for myself. That is when I really feel alone. Not one of the kids could get here if I was really ill so guess I would have to call an ambulance and submit to the professionals for help. Of course my next door neighbours were both away so who do you call on? It is times like this I really miss having someone else around. Having someone saying comforting words, having someone else make a "nice cup of tea". I felt the same way when I was a full-time caregiver so now at least there is no other person I am responsible for. I am so sorry caregivers, I can just rest when I know you can't and like me will still yearn for that mother-like figure who can make it all better. I guess we never grow out of that. Not a bad week all told, got some more of the gardening done, managed to get through my routine okay, all the boxes ticked. On the other hand I didn't really connect with anyone last week, sometimes I still feel the disconnection between myself and others. I even miss the everyday contact I used to have with the carers we had the last couple of years of Ray's life here. I didn't get to chat as I couldn't log in, I seem to have some computer woes right now. I think there is a problem with connectivity as sometimes I can get onto all my favourite sites and sometimes I can't, the computer seems to fail to find them. Better save up for another laptop as I guess they only have a few years of life before they quit. Had another cancellation as I was supposed to go and stay with a girlfriend who lives two hours away for a couple of nights next week. This is the second time she has postponed the visit so I'm guessing talking on the phone to me is all she wants. The trouble for me is I have a few friends like that, they invite me to "come anytime" and if I suggest a date they back off. I don't think it is necessarily connected to me being a widow but it may be. This is a busy world we live in so maybe time is too precious to waste on visitors? I'm realising how much I miss company since I came home from Trevor's place. He wasn't there a lot as he was working but I was okay with that as I knew he would be back sooner or later. Those last 12 years with Ray got me used to someone being right here for companionship and it is hard to get away from that. I was never told this was another aspect of long term caregiving that the personal space came to fit the situation so now I am grieving for that constant company that living with Ray ensured. Now the house seems empty and when no-one is about I feel lonely. I thought I would feel free but that doesn't seem to be the case. We are each subject to different triggers and I am learning more about mine by chatting to an old friend on Facebook. He has been alone for a long time and my complaints about loneliness and wanting someone to be here are a mystery to him. He just gets up and starts each day with a list in his head of things he wants to get done and that is his day. I think because he also works part-time he has a better work/life balance than I do. Maybe if I looked at my church activities as "work" and my time at home as "leisure" I would find life more satisfactory. Then time away would be "holidays" and I would feel as if I deserved them? It is just a thought I am considering. I am off to the WAGS group this morning, just to catch up with my old friends from that group and to a church meeting this afternoon. That will fill in the day. Thank goodness I feel like a human being today, that has to be a good thing. I've got to make the most of the next few weeks before the warmth goes out of the summer, the days draw in and we are set towards winter again. Then I will be moaning that there is too little time in the day. Never happy eh?

I don't have any advice as i have never been in this situation. I would say "go with your heart" as that always applies to me. Do ask the questions, make sure you are not being disadvantaged and then do whatever you decide to do.

Ken you are a real survivor. To type your blog with your affected hand is quite an achievement. I hope all goes well and the healing is well under way.

Nice to talk to you on Skype again Jeannie. Keep warm, Spring will soon be with you.

Seems as if things are going too slow for yo right now. I hope there are signs of Spring soon, in your world and in your heart. Maybe that will lift your spirits too. Sue.

Did you miss me? I just came back from Broken Hill where I had a week with my younger son. I went up to support him when he went to the Family Court to gain access visits with his daughter Alice. It is so sad that a marriage break-up causes such pain, not just to the couple but to their families as well. I have really missed seeing her and talking to her on Skype. It is a difficult journey in a way but I am glad I went as he said it had made a difference to him. I got to spend Thursday with my grand daughter Alice, last time I was able to do that was almost a year ago. She is a lively two and a half year old and at the end of the ten hours Trev had her for I think all three of us were worn out! She took some pictures with my camera and I put some on Facebook, it is like a little view into her world. I was so glad the Judge said the access could start right away so I got to spend that day with her as I flew home the following day. Where Trevor lives it is semi arid, almost a desert and I think I learned a valuable lesson there. The homes are often old miners cottages which have been added onto and made more modern but are still simple in style. I looked at how Trevor has furnished his home and it is very simple yet serviceable. I need to simplify my own home to make it easier to live in and easier to feel relaxed in. He said it is time to get rid of what I don't want and just keep a few things that I feel have real value for me. It is another way of saying that I need to declutter my life and I do. I need to look at what I want and how I want to live. It is hard to do I know but it is time for that review. It is a time of change, for my son who now sees himself as a part-time single Dad and to me as I ease further into the single life. I know nothing has been resolved but the good days, the days without tears, now far outweigh the bad days. Sure I am sometimes going to feel lost and lonely but other times I am going to feel confident making a decision and happy with the results. After almost two and a half years I still look back longingly to being a wife and a daughter but I am still a mother, grandmother, neighbour and friend to many, a volunteer in my church and on here and many other things. It is just I am also Sue Alone. My work in the church will change as I think the panel have a new minister in mind. It will be a while before we, the plebs, are told who he/she is and when he/she will take over the reins but whoever it is will make changes to the ministry team and that might mean changes to what I do now. That is okay, I will cross that bridge when I come to it. I have made big life changes before so what is one more...lol. I know I can pull back if I need to. The ability to say yes or no to a decision does make a difference. I couldn't always do that when Ray was alive, so now I can. I have a joke with my children that I have not found them a step-daddy yet. I don't expect to really. Such relationships are complicated and buying into a family with families of their own is a daunting task. I have a few friendships in mind but nothing is happening in any of them right now. Aussie men are marriage shy and that is what it means to have a relationship as a Christian woman - marriage. So that is probably not a part of my future. I do have friends in real life and in cyberspace, I do have good neighbours, old school friends I am still in touch with and acquaintances that I have collected in my life who I still hang onto and hope to drag into my future. I do not give up easily on friendships. But I am 67 not 17 and have to think about life on that basis. I can survive alone. I have done so for the past four and more years as I lived here alone while Ray was in the nursing home. It is so hard to let go of a companionship that was built up over 44 years. I still miss that man of mine..

Katrina, love your new photo, you are happy and smiling in it! None of us are happy and smiling all the time, we all have our good days and our bad days. As a young woman I used to think everyone else could do things so much better than I could until I found out some had made ghastly mistakes and just covered them up. So we need to know our strengths and say: "yes, I am pretty good at that", neither boasting or underplaying our strengths.

You are right Terry, we run into some interesting people, get some advice that is neither useful or informative and yes, there are boneheads all around. It feels like the Twilight Zone sometimes. Glad you are still with us, still blogging and still enjoying your post-stroke life.