swilkinson

Next time maybe put the you tube clips on a blog of their own as they can distract people from seeing what you are writing about your grandmother and her progress and make it more difficult for people to comment on the blog as a whole....just a thought.

Cagin, congratulations to your grandmother for being a lady of great perseverance. She is so strong and I understand that as I am a try harder person myself. Thanks go to your family for all the support they give her. And to you for the love you show her and for coming here to find out more information on her behalf. Well done all!!!

You are describing my Ray during most of his time after the fourth stroke in 2005 which is when I came on here. A lot of my early blog posts talk about this subject. I even posted one about a social worker who suggested that it was all my fault, that if I just approached Ray in the right way he would be happy to do his exercises as he had told her so! What changed was that I insisted my helpers exercise Ray. They were paid workers and had to do what the paymaster (me) said. Some of them didn't take kindly to it and said things like "he was tired this morning so let him off" so I would explain once more that no walking meant no shopping, no outings, no holidays, no visits to friends etc and in the end most of them did ten minutes worth of exercises with him. I had a list of his exercises, demonstrated them to the worker, then got the worker to go through them with Ray. If this all sounds like hard work it is but worth it in the long run.

I used to work in the Public Service and I know what you mean about Mondays, so take a deep breath and do your best, that is all you can do. But at least you are deemed ready and that has to be a good thing. Congratulations and hope all goes well.

Today was the day in my church when we remember those we love who have recently died. I deliberately didn't put Mum's and Ray's names down as I didn't want to hear their names read out but some dear sweet friend did so I got through the service and then had a mini meltdown. Now I hate that it happened. It is two years for Ray, almost two years for Mum and it still seems like yesterday sometimes. I keep thinking I am getting over it, I am almost over it, surely I am over it now but it seems it does not work that way at all I keep telling myself I need to start a new life, make some changes, forget the past and get on with the future. But it doesn't sink in far enough for me to put my thoughts into actions. Okay, I am a work in progress and like the renovated church I spoke of in my last blog there is a lot of work still to be done. I know I need to stop beating myself up for where I am right now and accept that sometimes I will feel sad for no reason, no explanation. Then when I do hit special dates I need to prepare to feel that way again. We all know that through our caregiving days special dates, Christmas, Mother's day, Father's day, birthdays and anniversaries will be difficult to cope with as they were once such good times and now cannot be celebrated in the same way and that goes on into widowhood too. There is no celebrations because there is no-one to celebrate with. The family will maybe remember briefly but won't contact or think about it much beyond that passing thought. Friends have their own lives to live so your sorrow will not be remembered and so your isolation seems so much worse. I had a discussion with my daughter when she rang this week and I will have her family here for a late dinner on Christmas night. Good. I will plan for that. I will get up and go to church and spend some time ringing other people I know who will be shut in or out of current society, like the people on the church sick list. That way I will not feel as if it is just me. I don't want to be caught up in my own little pity party, that is not a good way to spend a day. I want to be thankful for what I have had in the past. I have had many happy Christmases and now that has changed there are those to look back on. Oh for a visit to heaven, how I would love a hug and a word of affection. Some weeks I do get a hug from one of the other widows from church, some weeks nothing. I really miss my younger son Trevor since he has moved to Broken Hill as he would look at me sometimes and say: “Come here Mum, you need a hug.” and he was always right. It is hard not to have someone to show you affection. I get cyberhugs here and on Facebook but not the real thing. I really miss the bearhug Trevor would give me and my daughter too, she is a great hugger as well. We have had a series of thunderstorms in the last few days. Not a lot of rain, a little more would have been handy. Yesterday travelling home from a day out with a friend we seemed to be travelling on the edge of a storm, thunder and lightening and heavy rain slashing down on us. I was really glad to get home. When I got up this morning some of my flowerpots had toppled over and I had to set them straight again. As the storm was accompanied by wind gusts there are a lot of leaves too so that will be the task tomorrow afternoon, rake the leaves up. I am lucky that I have so much to keep me busy I suppose. I am still struggling a bit to know what to do on Friday and Saturday nights. Now it is November and the days are longer and the nights warmer it is the party season I can now hear parties going on in the houses close by. There are pool parties, BBQs scenting the air, the cries of babies, the shouts of small children and laughter all around. I guess that just adds to the loneliness, I am stuck here alone, a pity party in the making. When Ray was alive I was far too busy to accept invitations so now I simply don't get any. I am forgotten by the friends I once had and the older widows I associate now would never guess how lonely I am as when I see them I have my happy sociable face on and they do not see the loneliness I feel. Silly in a way as they are the ones who would understand. I know many on here must read my blogs and say how trivial my small worries are. They would be right too. I need to buck up, put my big girl pants on and get on with life, right? I have to remember the good times and not the sad times. Well, I guess I need to work on that some more, I'm sure I am not alone in that.

Shannon, we all have the "what ifs" and "if onlys", all I can advise you is to go on from today. Forget the hurts of the past and go on from today. You have a sad story, as many of us do. We all make mistakes and underestimate the trouble that ignoring what is happening to our own body or our partner's body will cause. ln some cases the level of responsibility our loved ones took was not good but I also made the mistake of seeing Ray's second stroke as a sugar high and almost didn't take him to hospital, a decision which would have been fatal. Don't blame yourself, just do the best you can with the situation. In time the children will get used to the way he is and forget what he used to be like. In time you will build up more stamina and manage better. It is time that heals and love that survives. Sue.

Betsy, thank you for describing your world to us. it makes it easier to understand what a stroke survivor can feel and see that is so different from what they had before. I like the idea of the bunny hop line. At our stroke group's women's weekend which is for caregivers and survivors we do hold onto each other in a kind of line or half circle and sway to the music. it is great to have a wonderful feeling of just being one, with us together connected in this way.

Katrina, you are coping as best you can. At least you can mostly turn your moods from bad to good. Enjoy the good days and put the bad days behind you as quickly as you can. (((hugs))) from Sue.

George, welcome back, glad you and Lesley had a great time. I do envy you the trip, seems like just what Ray and I had planned to do in our retirement which alas never came to be. Where are the pics of all the highlights? As to everything breaking down, yes, seems to happen here too when I get back from holidays, guess it is part of Murphy's Law. Sue.

Thank you Ron for describing the life you and your wife had prior to the stroke and the life you have now. I have no regrets for looking after my Ray for 12 years at home and one year in a nursing home except that we didn't do all that we had planned to do together. We did not have those golden retirement years but we had each other and that is why I still grieve now. Not for myself only but for the whole family, grandchildren included, that we lost him too young. Make the most of the time you have left together and it is lovely that you can still say: "I love you" and mean it. Sue.

Asha, your prayer is what we all pray for our children whatever stage of life they are going through. We love our children, wherever they are and whatever they are doing, they will always be our precious children however old they are and we want the very best for them. The best to come for me has been grandchildren, now I don't see them because they have moved so far away I pray the same for them too.

Great news Cagin, especially her having a shower with your Mum's help and also having a meal up to the table. Events like that will really improve her self-confidence. It sounds like your life has been very busy so I hope you do find the time to see your Grandma soon. Sue.

Nancy, I don't think so. I think we all act according to our basic nature and I have a caring nature so until the last year I was acting according to how I feel all the time, looking after Ray, supervising Mum. However maybe I would have changed that last year, maybe made more of a fuss so Ray could get hospice at home which would have helped BUT then where would my health and the peace of mind of my children have been? At least with someone else to look after him over night (I was there during the day most days) I did get some sleep.. Now I need to protect my own peace of mind so it is no turning back, no regrets for me now, just moving forward as best I can.

You will find a lot of people here who have experienced what you are going through. As a caregiver to my husband Ray for 22 years, the last 13 full time I also played the waiting game, waiting for doctors and specialists appointments, waiting for an antibiotic to fix up his latest infection, waiting for help (only had that the last three years of his long illness) waiting for life to improve etc. Asha on here constantly posted on my blog "Go with the flow" and I kicked and screamed and carried on, wanting this to happen, wanting that to happen. In the end I learned to go with the flow and life however grim had it's rays of sunshine peeking through those black clouds. It is what it is. Life is just life, changes are slow and not always for the best. No we do not get better (well my Ray had seven strokes, TIAs , fits and seizures) there are more set backs than improvements sometimes. But the sun still shines, the birds sing in the trees, the months come and go and somehow we go on. I wish I had a magic wand and could fix up all the lovely people who deserve so much better on here but I can't. I do not feel your pain but I do understand your frustration.

Katrina, some of us will support you whatever you post. Everything that has happened to you come from the strokes. Support is what this site is all about.

Ray had lots of falls, instability, inattention, walking too fast, leaning too far forward all played a part. When he finally broke his pelvis and was hospitalized for six weeks the radiologist showed me his xrays and it looked like a kid had scribbled all over it, each scribble being the result of a previous fall. He had pain after a fall but would always say he was okay and he didn't want to go to hospital thank you. Falls can be inconvenient, dangerous or fatal so slow down and take care.

I have been renovating my life. I have been building new bridges between me and some of the people that were sidelined by Ray's long illness and his subsequent death. It is not an easy process. A lot of people thought I should have paid him less attention and gone on with my life. One of those people is my older son. I am sure the rocky relationship we have now is partly due to that belief. However even that can be patched and maybe one day be better because of what we have both learned. I am hoping so anyway. He lives in Adelaide now, a two hour flight away. I saw him and his children and his partner last Friday night, although I had seen the children during the last school holidays I had not seen my son for a while. I was glad to have the opportunity to go to his home and then out to dinner with them all. It was good to just be Granma with her son and grandchildren. It has not been a good relationship since Ray died, I think we all thought: "Now things will go back to normal" but normal is not a place it is a state of mind and all of us have moved on from there. Ray's absence is so obvious at family gatherings and there is nothing we can do but get used to that fact. I actually went down to Adelaide to the commissioning of our past minister in his new church. It was an interesting place he was commissioned in. There are three churches on the one block of land. There is a small stone church which would hold about thirty people, that is the original church. There is a marvelous new church, built because the second, newer one was burned down by an angry young man who thought he had been insulted by one of the wardens who was trying to regulate his behavior. So angry he felt that he came back with a flaming torch and burnt the church down. Imagine the distress among the community, not so many are churchgoers but still many regard a particular church as "their church" and the act of burning down a church reverberated around a large portion of the community for that reason. The community, up in arms about the event, decided to rebuild the church and what you see now is the less than completed renovated church in progress. It has taken many years to build but it is now roofed over and the walls completed but not as yet used full time. It is used as a bridal chapel and for smaller prayer meetings. I was glad to see they have added a passageway between the renovated church and the new one so it is still part of the main complex, not just a sad addition - no longer used as the main church but a useful addition that is still used for small events but not for the main functions. I am telling you this because that is where I think I am now. A very traumatic event happened in my life, the death of my husband followed two months later by the death of my mother. Like the roof of the church I collapsed. I am now rebuilding. I still feel as if there is much work needed to get me to where I want to be, a new updated Sue, useful, welcome, part of the mainstream of life. You and my friends and family in real time are the community that is helping with the rebuilding. I am still useful, I come on here and post and comment, I still do my stint as a chat host, I still do the weekly Blog reports. I still take an interest in all the caregivers in particular have going on in their lives. I still attend Lions Club meetings and help out in any way I can in the community. I still do hospital, nursing home and home visits on behalf of the church. There are a lot of useful years in me still. But in no way do I want to be the Main Event. Too old and too sensible for that. And I no longer have that driving ambition I once had. Can we stop the collapse from happening? I think not. Keeping yourself strong does help, having "ME time" and "time out" does help, keeping fit and healthy does help. But long term caregiving is a big job and takes a lot out of the person doing it and at some stage a collapse might happen. My advice is wait out the grief, take positive steps to reemerge from your cocoon and if you feel stuck in the grieving call on friends and family for help. Always remember you are stronger because of what you have been through and somehow you will survive. That is my thought for today. I hope that helps. *photo shared from the Facebook Page of (Rev) Stephen Bloor who holds the copyright..

I do ask "what is this trying to teach me?" as I believe a lot of what happens to us we do bring on ourselves, by our actions or inaction. I think of gaining weight, smoking, overeating, over exerting ourselves, neglecting to eat a good diet, working long hours etc. We have a body that has limitations and if we overreach those limitations something has to give.

Every improvement is a good thing, And I agree about hearing a voice, my husband Ray struggled to get a reasonable speaking voice back after his 1999 strokes and it was lovely to hear him sounding natural.

I don't know if this will work for you but I plan my Saturdays. I have a Saturday meeting once a month and stay on to lunch, I also have friends who meet one Saturday a month. The others I go to our local shops which is in a mall and have a coffee, alone or with any acquaintance I see. I find that if Saturday is taken care of the week seems to go better. As a widow I can find the weekend very lonely as other people are caught up with family matters. I would just fill the days by whatever means are at your disposal, reading, craft, games on the computer if you play them, phone calls to friends, outings if anyone offers. I think if you can keep busy the days just fly by. Of course I am not stroke affected but do realise that you have limitations because of that. How abut hanging in one of the local libraries or a bookstore and seeing if you meet any interesting people there? A lot of interesting people love to read.And if you are interested in others friendships are a possibility. Wish I could help in some way, but all I can do is say :"I'm here." Sue.

Good for you Yvonne. My Mum had Alzheimers and it was a sad last eleven years of her journey. I will never forget all those lovely people who supported me during that time. Thank you for being a part of someone else's journey with this debilitating disease. You may never know how much you have helped to make someone else's day a good one but you did.

Tina, I wish for you quiet days and days of contentment to balance the days of sorrow and sadness. Get outside to look at nature, spend some time in the sun as much as you can that helps too. I still miss my Mum coming up two years since she died. And I miss Ray too. Their passing left gaps in my life that will never be filled.

http://www.godvine.com/This-New-Song-From-Glen-Campbell-Had-Me-Sobbing-THIS-Is-The-Reality-fb-gv--6170.html I knew him from his youth to old age, he became old too young,he went too soon. I know we all go through so many changes. But how to reconcile it all. Missing you Ray. Sue.

We all do what we have to do to guarantee that we have the best treatment possible, I suppose that is quixotic in a way but then we do it to hold onto hope. I can feel your frustration with all of this. In 2005 I confronted Ray's neurologist and admit to shouting at him. He said in 85% of cases he could make a diagnosis and see a way forward. As he was the best in his field regionally I did not look for another neurologist to go to. Unfortunately Ray was not in that 85%. So we maintained his condition(s) as best we could and he had another 9 years of not so good life. Sue.