swilkinson

Fred, hope you both have fun. Your wife is a jewel among women.

A few people have asked me what I intend to do with the rest of my life. To some of my older friends, 20 years older than me, from their perspective I should try getting out more, enjoying my life while I am able to, before the aches and pains of old age catch up with me. Some of my younger friends think I should maybe get a part-time job but I don't really want to go back to work now. I was a caregiver full-time for 13 years, then part-time supervisor to Ray and Mum in their nursing homes and now I am officially "retired" and I mean to spend my healthy days on doing some of the things I didn't have time to do while I cared for Ray. BUT WHAT? Sure I have plenty to do. There is the cooking, cleaning, yardwork. Those things that I have always done. But not having Ray and Mum to look after or visit, has left me with a lot of empty time. After all those years of caregiving it is difficult to know what I want to do with it, in what way I could spend my time that would seem worthwhile. I have been reading Jean Riva's blog on blogspot and she has written several blogs on the same subject: what to do that she would enjoy doing and consider worth while. Of course some of my friends would like me to join the groups they belong to but I need to join groups that interest me, that fit in with my values, that would use my talents and appreciate my gifts. At the moment I am going on with groups I have belonged to in the past. I went to the WAGS group lunch on Saturday. It was like walking into a reunion with old friends and I enjoyed it, but there is a sense in which I do not belong there now. I found the survivors particularly hadn't much to say once we got past: "Hello Sue, how are you going?" Because the next natural question would in the past have been "...and how is Ray?" So there were some uncomfortable silences. I would sometimes like to hibernate, like bears do, just hole up with a good supply of food and shut the world out. Shut out all the loving, caring people who think if I just did this or that my life would be fine. But how lonely would I be then, even with the laptop and the visits I can have with my cyber friends? I need to do something regular where I get to interact with others. Left to myself I can go for days without a conversation face to face and for a sociable gal like me that is not good. That way lies madness. In the church I am going on as before, my name is on a few rosters and I try to be there when I am rostered on. But the need is in other places and that is something I want to explore. Would I be better suited to leading groups now rather than in acting as a liturgical assistant? I think I need to do some grief training first before I volunteer to do hospital visiting . At the present my life is so unstructured. I welcomed that for a long while but now I am looking around for something to do that seems worth doing and meaningful. When Spring comes and the days lengthen I am going to rethink what I am doing and when and see if I can find something that fills my time and provides me with some new relationships that may turn into friendships. I have been to a lot of funerals this year as the church oldies and the older Lions have succumbed to illness and cancer among other diseases. It has been sad to go to a funeral just about every week and it does bring home to me that I need to make friendships among YOUNGER people. I don't want to rush into things, I've just had a couple of wobbly days. I think it is because I need to make some decisions that will affect the future, particularly my future in this house. There are a few repairs to do that are going to be expensive so I have to think how long I will stay on here and if spendng a good deal of money will be worth it or if I should just do "bandaid" repairs and sell "as is". There is electrical work to be done, some interior doors need replacing, the whole house needs to be painted, inside and out, and then I need to replace some flooring. Ray built onto this house last in 1983 and it shows. So do I do a large renovation or do I just patch some of the problems and leave the rest? I seem to be going over and over the last year or so of Ray's life again. I thought I was over that but now it has reappeared. Sometimes as I am waking from a nap I even think I see a glimpse of him as I did this afternoon. I am not usually that imaginative so maybe it is just a form of wishful thinking? I often wonder why I can't just accept that it is over and move on? So many reminders all around me in this house that he is simply not here now. So sad.

That last trip that Trev, Ray and I took to Queensland was an overall disaster and so hard on all of us but when last week I rang his old friend that we visited for his birthday he said:"Bless you for bringing Ray to visit us. The memory of that visit is so special to me." So even if it seems a waste to you it can mean the world to someone else. Keep it up Debbie, the encouragement, the slowed down version of food preparation etc that includes Bruce so it is a shared chore, telling him the couponning and every little thing that he does is special. It is memories in the end that you will cherish more than you would think right now, just as I do my memories of Ray. I hope the Estim and the exercises will lead to some worthwhile improvement.

I believe you can do what you set your mind to Dave. But the full marathon is a much longer distance and you will have to plan rehydration etc. Good for you. You are an example of perseverance at work.

And get in touch with all services pertaining to people with mental, physical and emotional problems as when you have problems you want help ASAP not sometime in the future. We have a couple of homes which provide short term respite and they have to have teams of people on stand-by. Ray had one five day visit and had a fall requiring a nurse to attend to do dressings on his arm. People with problems such as poor health, be they from stroke damage, mental or physical health problems also have other problems such as financial problems etc needing a lot of imput from outside services so a small "infirmary" with a well stocked medical safe would have to be included somewhere and a room where they could have private conversations with legal representatives etc. Think about what this future plan would be like if Dan were suddeny not at home with you too. Would it be sustainable if you were on your own?

I used to be the neighbourhood watch lady, only have four sets of house keys now as a couple of neighbours have moved on. Glad to hear your roof is getting fixed at last, yes, it is noisy but that feeling of security is worth it.

Nancy, I have had a lot of advice from the wonderful survivors and caregivers of Strokenet that has been invaluable. I think therapists who worked with Ray could have given us more answers but they always seemed to hurry their sessions and there was no time for questions and answers at the end. Whatever works, works. Sue.

Cindy, as this site is run with donations and fund-raising unless we have a sponsor for video chat I guess that is off the agenda. As it is we are fortunate to have Survivor chats, Newbie chats and Caregiver chats thanks to our wonderful volunteers who make that possible. It would be nice if more people took advantage of what is available but maybe some are too shy to do chats at all. You're all welcome to join us anytime. Come on in and make new friends and talk away - vent and get this straight in your mind, encourage and inspire, share knowledge, exchange information and learn more about what you are coping with and how others do it. It is a win win situation. Sue.

Welcome Jean, I am Sue, Blog Moderator and Caregiver chat host. I live in Australia and am a widow as my husband Ray, who I looked after for 13 years died last September after many, many strokes, siezures, dementia etc caused his slow decline. I have stayed on as a volunteer. All of us cried rivers of tears, went through the "Why me?" stage, in fact went through all the stages of loss and grief. And then hopefully we reached acceptance. I picture acceptance as a tiny island in an ocean of tears. We don't get to stay there long as other happenings drag us back into the tears, denial, anger, "why me?" bargaining, etc stages. Life is for us a rollercoaster. But you have found us and you have found a supportive, friendly, experienced group of survivors and caregivers who will do anything they can to help you. Join in as much as you can, continue to post on your blog, read the posts of others and come to chat if you can.

Ken, you had, for a long time, persevered by yourself , doing the best you could so at least you kept yourself strong. That made it easier when you found Gates and much better PT than you had done before. Reading here I do so wish my dear Ray had found something similar. Here in Australia they often discharge without a follow-up plan and you are discharged simply because they have done six or eight weeks and that is your limit. It is a cruel system. Keep on working out and getting as much improvement as you can. It is hard to unlearn old habits though so you do have to be 100% alert when you walk and do it "their way". Thank you for the detailed information you have provided here. I am sure others will be able to learn from it.

Julie, the Vital Stim is worth a try. Ray had a throat ultrasound and an xray done as he was swallowing. Once they found which muscles were not working there was nothing further to be done back then so I am glad we have moved forward from there. The TV problem is a curse I am sure as TV watching occupies so much of their waking time. I hope you do get it fixed or for me the Italian solution would come next too. Sue.

Fred, you are in my thoughts and prayers, travel in peace, give your strength to those around you.

My birthday passed off okay. With a cake at Craft and a few congratulations at Lions and dinner and cupcakes the following night at my DIL's place with her family. I missed the big family gathering, missed Ray, missed Mum. I know I will never be able to recreate those past times, I just don't have the light hearted approach to life I used to have. I guess I am older and wiser from the experience I had during those last 14 years but with that came some pretty heavy memories and they are still weighing me down at the moment. We had some silliness in chat this week, lots of cyber wine flowing and the group members were as always great in their support for one another. I am so glad we did form the Caregiver Chat group as it has provided me with such a wonderful group of people to be friends with over many years. I am thinking of changing my status to volunteer as that is what I really am here now with my caregiving years behind me. I am a volunteer at church and in other organizations too so that is what I am used to being called. I had the funeral to attend on Thursday and Friday was busy too with church meeting and home communions to do. Luckily my southern grandkids and Shirley arrived an hour after I arrived home and Craig an hour later. He has just completed a Chaplaincy course in Sydney. We had a late dinner and a chat before bed. Up fairly early this morning and Shirley took me shopping for a wet weather jacket to take on my trip. I guess it rains a lot in England and Ireland so better safe than sorry. I am still deciding what to pack. Probably it would be best to travel as light as possible. We had Alice's party to go to so much discussion on what to wear , what there would be to eat (Christopher) what one should wear in one's hair (Naomi). While out shopping, how did I mamange to get stains on the front of what I was wearing? Back to change once again. I knew my DIL would take lots of pictures and she did of: cousins, uncles and aunts, Granma, Nanny, Nana Chris all with food on the way to their mouths. No glamor shots but no hurt feelings, unless maybe the worst ones are posted on Facebook. Lots of littlies enjoying each others company, playing with the toys together especially the "just turned one" boys and girls of Edies's Mum's group, lovley to see the group of workmates and their children sitting together. The party was a resounding success. The oldies sat and discussed likeness. Alice's colouring is slightly ginger hair and blue eyes, Pam and Steven's three Tori, tall, dark hair and eyes, Alex, mid brown hair, built sqaure of body and piercing blue eyes, Oliver, much thinner,black hair and dark brown eyes, From Shirley's family, Christopher, tall, square build, honey blonde curls and blue eyes, Naomi, thin,midbrown hair and grey eyes. From Edie, Lucas has inherited his mother's dark hair and eyes. His cousins, his aunt's boys are both mid brown hair and hazel eyes but Edie's brothers children, the little girl blonde with blue eyes, the little boy red hair and green eyes, There are some resemblances and some ways in which one cousin resembles another in another family. Lucas and Tori, not blood relatives are often mistaken for brother and sister. I got back from Alice's birthday party worn out. It was a wonderful party but exhausting following Alice as she ran around. She was happy today and laughed every time someone else laughed. She loves running around, looks like a wind-up doll when she runs. Watching her was a lot of fun. She had some helium filled balloons and we each held a string. Easy way of keeping a hold on her. Not to mention keeping the balloons from flying away when we were outside and she let go of the string! Seven grandchildren, what a blessing I have been given. Having most of the family at Alice's first official birthday party was bitter sweet, reminding me of our large family gatherings and also Trev and Edie's wedding as all of her side of the family were there. But of course no Ray. There were lots of littlies running around, with the two joined families plus Mums and Bubs group families and friends of Edie's from where she works. It was noisy, busy and lots of fun. But for a while I went outside alone and sat and thought about Ray and why it is really sad that now we have to go on being a family without him.

Good for you girls and boys, have fun.

I am so happy to hear of the sense your Mom is making now, her interaction with the grandgirls and the enjoyment she is finding in life. I have seen so many in nursing homes in her position full of grumbles and gloom to the extent that the families no longer visit and while knowing the residents have a lot to be frustrated about that doesn't help. Keep a watch n your emotions and rest when you feel tired, Grieving takes a lot out of you so if you feel sad as you will from time to time just take it easy. The world will wait. (((hugs))) from Sue.

Wow Sandy, you are having a busy patch in your journey. I am glad you have an offer on the house, I hope it all goes through smoothly. I'm glad you won't be doing midnight to dawn as a painter and decorator. You need good sleep to be a caregiver. I laughed at Bob's comment, I used to do that with Ray, try to interpret what he said and it all turned out to be something simple in the end. Sorry your Mum has been sick again. That is an extra worry you do not need.

I have spent a good deal of my life worrying about those things I had done badly, missed out, overlooked and screwed up. It is only on this side of 60 I have been able to look back and see them as human mistakes, part of being an outgoing person who probably has tried to fit too much into her life. So I have learned to forgive myself and others. I guess this is the root of love - forgiveness. Thank you Asha for bringing us another wise blog.

Memories...some sweet...some painful. We lost some family photos when a lady who was a distant cousin of Mum's came for a visit and asked for some of her photos of her family to have copied and then vanished. I remember a colorized one of Mum's mother in a dark green velvet dress I would have loved to have kept for future generations. Maybe see if there are cousins, family friends or old neighbours who may have taken some photos on a casual visit and kept them. Sending out some letters or emails never hurts, at least it will help reconnect Bruce to his past.. Friends do drop away (ask me!) and that is a sadness but it is inevitable. Other casual acquaintances don't quite fill the gap but we need them anyway. I am lucky I have so many of those, I only see them maybe once or twice a year but it does keep me grounded. Hope you find more hidden treasueres and maybe get a circus strongman in to get the rest down for you.

Kelli, if you love your husband and he loves you you go on. All marriages have sticky patches. Some find marriage enrichment courses help more than therapy. The aim is to bring you back together as a couple. Ray and I did a day session and I think that helped. He could never say "I love you" except during intimacy so he needed to be able to say it at any time I needed to hear it. I have doubts that things can be the same after an affair but you just have to keep rebuilding the relationship. It is a bit like keeping your house tidy and well maintained, you do a bit every day. I think my husband had an affair when I got really busy with the church and maybe I was not there for him as much as he liked and another lady flattered him and he spent some time with her that he shouldn't have, I don't think it was very serious but it did put a dampener on our marriage for a while.

I understand that "nothing helps feeling". Having lost both Mum and Ray last year I was in your position for quite a while. I can say that six months and eight months out I am more able to cope but those waves of grief continue to come. I am just more able to get over them now. When I cleared Mum's house out it took me eight weeks. I opened every box and burst into tears, so many memories of her and my Dad and happier times. And it did feel so bad, as if I was somehow throwing her life away. Warm (((Hugs))) and wishing you calmer days ahead. Sue.

Katrina, you keep making an effort and you keep making a little progress. I admire you for your ability to bounce back. I have read your blogs for many years now I know you get discouraged and feel as if you are down on the floor again but you never stay there for long. I hope this period when you feel at peace will last, you need to have the break, get some good sleep and power on again. Sue.