swilkinson

Nothing wrong with your blog at all. It does seem as if I need to go see Mum every day now too. My Mum is in her final year and is very frail but when I see her face relaxed in sleep or a smile or enquiring look on her face it is all worth the effort. Good first blog. Now for the second blog....Lol. Sue.

Debbie, I don't have answers for your questions here. I looked after Ray for a long time but I didn't have to balance work hours as well. I think you are doing a great job but do sometimes wonder how long you are going to be able to do things at the present pace. I am sorry to hear what happened to MaryBeth, she has a lot on her plate too and bruises and stiffness is going to hamper that. She has been a great support for you and I wish only good things for her. Sue.

George, road kill deer, I guess they are still warm when you get to them? I LOVE venison so one day I might turn up in your neck of the woods and sample some of that good bread Lesly makes and some venison...okay? Sue.

Susan, I love that photo of your daughter and grandson. I used to pick apples in England at a farm down the road from where we lived when I was about the same age. My Dad used to put me on his shoulders to do it. I still remember that feeling of being high up in the air. Sue.

I am still feeling very vulnerable. On Sunday I had a meltdown in church when one of the hymns referred to "going down to the grave". Without even thinking suddenly I found there were tears streaming down my face and I was in meltdown. One of the older ladies stepped up and gave me a hug and then suggested I go wash my hands and face and maybe have a drink of water. Several ladies came up at the morning tea and said after xxx number of years after their husbands passed away they still did that sometimes when a certain song came on the radio etc. It was Rememberance Day also, a day special to my father who was a British soldier although later an Australian citizen. So after church I went to see Mum for a short visit then went on to the cemetery and spent some time looking at Dad's grave and then Ray's. It was a sombre morning so I guess the weather matched my mood. I then went on to visit an old friend whose behaviour is worrying me right now. She seems to rarely leave her house now and I know while old age and some physical problems are part of the reason it is so unlike her as she is usually a bubbly outgoing woman. I think my visit cheered her up as we did some laughing and joking but it will be an ongoing problem I think and I hope her family will see it and acknowledge it. She is to go to a family wedding in a couple of weeks time so hopefully her sons and her daughter will spend some time with her then. I can understand where she is coming from as like me she was a long term caregiver. It is very different being a widow when you have been a wife and a caregiver. Looking back I was really a caregiver for 22 years as Ray had the first stroke in 1990 and although he recovered and went back to work chronic fatigue issues meant he came home really tired so I took up the slack at home and both worked and studied and raised our 15 year old, organised our 18 year old and mentored our 21 year old. The time from the 1999 strokes on you all know about. So here I am, out the other end, Sue alone, wondering what to do with my life. Someone told me I should see what my life consisted of when the strokes happened and see if I could do some of the things I did back then. That would be a little difficult as in 1999 I was working as a public servant and helping out in a Parish as well as overseeing my parents who were getting overcome by events, my Dad having advancing cancer and my Mum having Alzheimers. I did their shopping, used my days off to take them to medical appointments etc. You all know most of what happened once Ray had the 1999 strokes as it is documented here in my blogs (okay I don't expect you to remember all that but you will remember some of it). I could take up some hobbies but I don't think I could manage that yet. It is too soon. I am still somewhat emotionally raw. I only have to see a couple walking hand in hand, hear a song with personal significence or even see a caregiver walking toward me with a man in a wheelchair to have to hurry off to the powder room to blow my nose and wipe my eyes. I can't see me volunteering anywhere else for a while yet. Of course I still do on here as Blog Moderatior and Chat host, mainly because my chat group would not hear of me leaving! Of course I am getting heaps of advice from my "friends" so I politely thank people for their kind thoughts and like eating chicken I feed on what it helpful and put aside the rest. I know people mean well and often it is out of ignorance that they say things that are totally inappropriate and insensitive. I have to overlook that as much as I can for the sake of continuing friendships, I need them if I am not to have a lonely old age. It is not easy some days and I want to scream "what the h*ll would you know" when another friend says "just get yourself a little hobby or do some travelling". But they mean well, they really do. They have just not had the same experiences as I have as yet. I really worry about Mum, I know there is so little I can do for her. Today when I visited she was wriggling and looked uncomfortable so I repositioned her, something I don't usually do. Then I sat next to her bed and sang to her. I sing old songs she used to play on the piano when I was young if I remember the words, old church songs and hymns, even nursery rhymes if I can't think of anything else. It seems to settle her down. There is so little I can do with her now. I take her out into the sun when she is sitting in her comfy chair but the past few days when I visited she has been in bed, I guess because she is still on antibiotics. While I was singing today I heard a movement and looked around and there were four trainees standing right behind me. They all had puzzled looks on their faces. I guess they thought it strange I was sitting there beside a sleeping old lady singing away in what is not the best singing voice in the world. Maybe when they get home and think about what I was doing they will realise that it was just to comfort my Mum, in the same way we sing to our babies to calm them down and maybe some night, by the bedside of a restless old lady they will find themselves doing the same. I know what it is I am missing, it is Ray, my husband of 44 years, and my purpose in life which was to take care of him. PS I did go down to Shirley's last week, I went down by train on Wednesday, a five hour trip, then went to see my grandson Christopher being the MC of his concert,which was very good. I came back on Thursday with Craig as he went four hours further north to take his Mum home. Christopher was so pleased to have his two grandmothers, his uncle on his Dad's side and the Corps youth worker as his guests at the concert as well as his Mum and Dad and his sister. So I did do one thing that was fun.

I just want to give you some thoughts about the wedding. Edie-Lee and Trevor brought their wedding forward so Ray could be there. He was still in hospital, had been since the May stroke and was now completely wheel chair bound but somehow I managed to get him a suit, get him to the wedding and we had a good time. BUT they cut their wedding down to a size we could all manage. She had the dress, the hair extensions, the facial, the nails,the full bridal bit, but no party before except for a few girlfriends who gathered at her sister's house the week before. She had her sister as her bridesmaid and two nieces and two nephews to make up the bridal party. The reception was cut back to immediate family, 18 of us, going out to dinner afterwards but she invited her friends and work colleagues to come to the service and we all had a group photo and all went home with a thank you card and a piece of wedding cake with a copy of the group photo sent out afterwards. There was no honeymoon, just a night in a nice resort and breakfast and lunch to follow and then they went home. It was all very low key and they have no regrets.In fact I think the impact of what they had done actually gave them a stronger bond, I am not sayinh this is what you should do but offering it as an alternative to thinking you need to have a big wedding ( something that will cause more stress) when actually a small family wedding can still be something special. Sue..

Fred, I live in a land of droughts and flooding rains. We have cyclones (hurricanes) north of us in summer and snow south of us in winter. Mostly our weather is mild but it can be hot, cold, wet and dry all in the one day with the strange weather we are having. I guess if you are travelling you plan for the worst case scenario and rejoice when none of that happens. Sue.

Debbie, all you can do is keep on keeping on. Doesn't sound as if the weather is very good for you, we finally have the first rain in weeks so hoping the brown lawn will magically turn green overnight. I am listening for the phone as Mum is still not over the chest infection, as the nurse I spoke to today said it could go either way. Sue.

You have my prayers too. We have all got to know and love Tootie so much through your postings. She is truly in our hearts. Sue.

In the face of such adversity as Sandy brought to a lot of Americans my problems are small. I just came home from my Womens Weekend and have been sitting here in tears. I have to say "goodbye" to women I love so much. I will go on with the WAGS group until Christmas, enjoy the Christmas party with them and then decide when it is time to fade away. It is like that feeling you had as a child when you went to your favourite holiday spot and on the last day, after packing up and piling into the car, you watched as the place you loved most in the world slowly disappeared over the hill or around the bend and you were bereft, crying and thinking: "I will never be as happy again". Now as an adult I know that you can feel happy again,maybe not with that intensity but happy enough. And so you grow up into a world that will never be what the sunny holiday world was like. But okay and sometimes wonderful, full of people to love, places to go BUT not that special place. Even this weekend I felt out of step. I knew the furious arrangements that had gone on behind the scenes with the caregivers, getting everything ready so they could leave their loved one in the care of someone else, daughters, sisters, or in some cases respite centres. It is never easy to take even a couple of days to yourself. But to maintain a balanced life and to maintain your own mental health it has to be done. You need that break, to get rested, to be aware of a wider perspective, to just remember for a few hours who YOU are as a person. The women survivors fight different battles to get there and it was significant that we had lower numbers this year. There were two new ladies which meant that six ladies from last year were not with us. One has withdrawn from the group having been upset by something some one else had said, it happens. Two caregivers have husbands whose health has deteriorated so they didn't come this year. One was away on a cruise postponed from earlier in the year when her husband was sick, and two no-one knows really why they didn't come, they just didn't. I know we have to accept that not everyone can talk about their troubles so maybe we will never know why. There were the success stories: "look I can do this now", the sad stories, one husband had had another stroke, my story of Ray having died in September. We all hugged each other, danced wildly, some drank and looked seedy on Saturday morning and again this morning. There were adventure stories, two of our couples now go caravanning together and they were full of where they had been and what they had seen, it was lovely to hear how stroke had brought them together and now although such holidays had been thought impossible they were now starting to live that retirement dream. I shared with the same person I have for the past two years. She is a survivor, a hemiplegic, a scooter person, a wonderful mother and grandmother. We worked in the same building so each year I update her on the people we both know who I have gained news of. This gives us a bond as we have lots to talk about. I also help her out, she doesn't have a caregiver at home and manages okay but on this weekend I fetch and carry for her to speed things. That way she can wear a fancier dress knowing that I am there ready to help her with the buttons and zips. My room mate had an upsetting incident on Saturday night. She is a mad supporter of a local football club and their home game was at 7.30pm at the local stadium. She had booked a Maxi taxi which can transport her and her scooter. The pick-up was over half an hour late so she only just got to the game and had some trouble manouvering to where she needed to go. The home team won 7-2 against a much stronger and better supported team. She had also booked the return journey but what turned up first was a small wheelchair taxi, then another and another. In the end one of the drivers rang back to base and angrily told base what she needed and that she was a woman on her own and she needed it NOW. So she got home at 12.30am instead of 10.15pm. I love the dancing. I love the movement on the floor, the colors of the womens dresses, the joy on their faces and the singing and clapping and stamping that goes on. Our entertainer is an old Frenchman, full of charm, he plays the keyboards and the guitar and is more than adequate for what we need. He has had cancer and the last two nights, he said, would be his last. We were all sad about that and last night he got a lot of goodnight kisses and hugs from us all. It is sad that not only do we have to move on but others do too, due to ageing and illness and other circumstances beyond their control. I loved the weekend. It is such a boost to all of us there. It is a revelation to the people we come into contact with. The waitresses and the service girls are all so kind because they know we are either survivors or people who look after survivors and that this is a special weekend for us all. As usual we had a massage and I had the relaxing massage this year. I know my back is much better than in previous years. The masseuse said my shoulders were very tight and I am holding a lot of tension in my neck. I told her when the massage was over that Ray had died in September and she shed a tear and gave me a hug. Such good people in the world make it a good place to be in. So I am home and need to set up a plan to finish off some of the paperwork I have started. I need to go and see Mum tomorrow and maybe ask whether there is a plan for her. I need to contact my kids and tell them I am okay but not as okay as I would like to be (still often close to tears) but I am getting there. I need to store away happy memories, like the happy memories of this weekend to keep me going into the future.

Stessie, you are a miracle woman for sure. I am so glad to be in contact with you and so many other wonderful people from Strokenet on Facebook. It is like a mini notice board, I can say Stessie is doing this, Sarah is doing that...someone else... Thank you for the update. I am so glad you recovered from all of this, and that you have come back to my Blog Community to check in with us all. Sue.

Dyan, you and Cayden are a great team - keep it up! Sue.

I'm glad you came through this storm with relatively little damage. I have been praying for all my wonderful Strokenet friends all day here. I've really only seen what is happening in New York on our news and that does not seem too bad, so hope and pray all the rest of the country is safe. Take a deep breath now and do whatever you have to do but please put a day aside sometime soon as a relax and recuperate day. Sue.

Babs, nice to see you on again. I think we all have a book to write, see if you can find a writer's class to attend as that will help with the way you set things out. You and Eddie have a story to tell for sure. It is good you have now got an "man's shed" for Eddie, just make sure he doesn't fill up the storage area too fast. Save a little area for your own special things. Sue.

My blog is called "Still sorting Life out" because that is what I use it for. I use my blog as a reflection, not a list of everything that is happening but a slice of that. It is partlyp ersonal and partly philosophical. I am sure there are people who read it and say: "what is this woman on about?" but that is okay. Jamie, I see a lot of wit and wisdom in your blog. I am sure there are a lot of people who echo what you have said with a heart-felt "me too!". Keep on blogging, change if you must but make it your own story. Sue.

Sandy, it is risk management, a balance between you wanting him to be independent and wanting him to be safe. We cannot wrap them in cotton wool and we do know the risks. I think praying hard comes there somewhere. And being independent is so important to Bob, as it is to all survivors. BUT people do learn from their mistakes as you well remember from seeing little ones walking on unsteady legs around a mat on which they have slipped before. We all learn from our mistakes so have to make a few mistakes to go on learning. Well done both of you. You are making real progress in recovery and in strengthening your relationship and finding your new normal. Sue.

Donna, this is not uncommon. I have hear a similar story from others in the nursing home Ray was in. A stroke, some kind of fall, a series of TIAs can all lead to a persistent weakness that seems not to go away. On the other hand some do recover and go home so I hope Lauren is one of those few. Keep emphasising to him that it is "move it or lose it" that he needs to increase exercise and movemnt and get stronger so he can go home. I am heart sick when I think of how my Ray lost so much movment with the 2011 stroke that he never returned home. I hope it is not so for Lauren. Keep courage, get your support group praying and you will both come through this. Sue.

Fred,I do remember a lot of things you talked about. Rear window wipers were the youngsters in the car running back with an old rag to wipe the mist /rain off them so Dad could see out the back. I learned to drive when I was twenty and could only just reach that dimmer switch, when I was pregnant the passenger had to operate it as my foot would not go over that far, even with the seat as far forward as I could do it and leave room for my baby bump. Good work Fred. Sue.

Sandy, I don't know how you have the energy to do so much but I guess the need is there and you are like the Energiser Bunny. Sounds as if you have accomplished a lot. I hated every time we moved that the house finally looked the way I had wanted it to all along!. Watch your stress levels, I know when I get busy I eat at odd hours, sleep badly and boom! it is so easy to fail in looking after myself and over the cliff I go. I will be thinking of you. Sue.

I find your blog an inspiration as always Fred. I must confess I am not feeling that positive about life at the moment but know this too will pass. In the meantime I know what you write will inspire and encourage others when I feel unable to do so. Strokenet's strength is that we know we are all in this together. (((hugs))) from Sue.

I am recently widowed and mentally I am still a mess. I plod on, day by day, doing what housework and yardwork has to be done, shopping, visiting Mum, keeping a smile on my face. People are kind and rush up to me in shopping centres to tell me how they only just heard Ray has passed away, how sorry they are etc and I just want to scream. By the time I have thanked them and they move on I find I need to rush to the rest rooms and have a few tears (stress release), wash my face and compose myself before going back in to the shops to do whatever I came in to do. I can cope with Ray's dying, I can compose myself enough to attend meetings and go out as if nothing has happened but phone calls and letters that tell me I have to fill in this or that and return it before such and such a date are beginning to drive me mad. It is changing everything over into my name, small accounts in the bank, bills with Ray as the account holder, all of that means a LOT of paperwork. I don't know how many times on the phone people have told me: "this is what you need to do before I can speak to you about..." I am getting so sick of it. Yesterday, out of the blue, I get a letter telling me one of Mum's investments needs renewing. Mum has been in care for the past 11 years, marked "palliative only" and the call centre person tells me I need to get some paperwork signed! I did my best to keep calm but failed miserably, I was screaming at her: "I'm a new widow, I haven't time to find a justice of the peace, get a heap of paperwork signed, jump through hoops for you" and jammed down the phone. This was a warning I think that I am beginning to let all of this get on top of me but for heaven's sake why do I have to keep jumping through more and more hoops? And why can companies suddenly swithch plans and ask for yet more paperwork? Each time I try to change details or cancel something or change it into my name I come under a whole lot of new rules and need to comply with new conditions and take out a new "plan". It seems since mobile phones have plans everything else does too. So the call centre person tells me: "I will just explain your new plan" and 35 minutes later, if I am lucky I am back off the phone. That 35 minute call is like living three weeks in hell! Okay, I know some of you who have been widowed or divorced have gone through this so you know where I am coming from. Why do I feel so helpless, as though I have been thrown into the middle of a raging stream? I guess because I am very vulnerable, being a widow is nothing like being a wife and caregiver. I have lived on a knife's edge for so many years with Ray's many illnesses, health needs and physical and mental needs and somethow I have survived that. But now, when I am so depleted up pops another set of problems. Warning to others, make sure you know what each company does after a death in the family. Who knew that the call centre staff were so unhelpful and when I say my husband has died they would not express sorrow or give me condolences, just tell me: "this is what you need to do"? Okay, it is a business and business is known to be hard-faced and "all about the bottom line" but I am a customer, one of the many that keeps their business going and could they not at least be polite to me? I have had a roller coaster week, good and bad, being told Mum is "palliative only" now is still fresh in my mind. I see her lying there, barely conscious and know that is just the way things are and there is no going back. She will die in the near future and I will go through all of this again, the grief, the funeral, the transfer of "goods", really that is all there is now. I love her, I grieve for all the changes she has gone through, all she and I have gone through and yet she is still alive. I had an afternoon tea with my daughter-in-law Edie and played with the adorable Alice, I had dinner with my daughter-in-law Pamela and played with Tori, Alex and Oliver. I am blessed. I cried after I left Edie's because I could no longer tell him what I did, what I experienced, what I felt, how moved I am by my experiences with my grand daughter and how I wish he could feel that love in his heart too. It is one of those hard things you face after a death, your loved one can no longer do the things you do, expereince the grandparent role, watch as the little ones grow up. It is so sad. I went to the Apex40 dinner last night and the President gave a brief eulogy for Ray. Female members cried, male members came over and squeezed my shoulder or hugged me. Ray, a member with me of this Club for about thirty years, is gone but not forgotten. I am glad of that, I am glad people do remember him and will for some time. I know I have to keep moving on, moving forward, doing all the things that needs to be done. But really I just want to get over this mountain of paperwork and see blue sky on the other side.

Ruth, just a thought is there any very part-time jobs in your area? A lot of retired pharmacists here do maybe one day a weekend or holiday leave coverage or a day here and there. Just to keep you current with your knowledge of the job and with what is happening in the industry. Sue.