swilkinson

Katrina, I've read this a few times and don't really know what to comment. If I were you I would just take it easy for a while and just have some time with your folks, just as you did with your Mom, enjoy just being together. For now it seems like a holiday, it will not always be like that so make the most of it. I wish there was an answer to what is happpening with your seizures, it must be frightening that despite the medication you are on they still continue to occur. I hope you do find a solution soon. (((hugs))) from Sue.

Fred, I don't think the legislators have any idea of what is needed to get survivors back on their feet. It is not about the current situation of the economy or lack of resources, it is simply that they have no understanding of what survivors or caregivers go through. You all have to petition them to get the point across.

I was reminded how lucky I am this weekend. I had taken Vicki, the young friend who is staying with me to the Saturday markets at a friend's church. We had looked at all the stalls and were sitting having tea and scones when a man came up and sat down at our table. He obviously had brain damage and told us he had a career as a school teacher and youth worker when he was involved in a car accident that was not his fault and his whole world was turned upside down. It reminded me so much of the stories on here, how in the midst of life our world can be turned upside down, never to be the same again. I think he had his eye on Vicki as he kept telling us how good it was to have morning tea with such beautiful young ladies. One out of two ain't bad...as my Dad used to say. We also went over to Trev's and had lunch with his family.Vicki was impressed with Alice. Alice is such a funny little creature. I love her heaps and will really miss her and the rest of the family when they go tot Broken Hill. Edie is enjoying the training and knows she will have to absorb a lot of information if she is to do the job satisfactorily. On Friday I did a pastoral visit to a lady who now lives in the Dementia Lodge that Mum lived in for 8 1/2 years. It was hard to go there in a way but I was asked to visit her by our young minister who had received a call from her family saying the church didn't visit her after all her years of service etc. We would have visited her earlier if we had known she was living there but as usual no one had told us. So I was happy to go and see her. She is at the humming, mumbling stage so I did a visit where I sat alongside her and talked to her gently about what was happening around us. It is easier to do that with a stranger than with someone who is dear to you. I did two more pastoral visits in the Hostel over the road. One lady I am just getting to know, she told me she had stroke aged 36 six weeks after the delivery of her fourth child. Luckily she had family at first to look after her children and as her husband had a well-paid job they could afford to hire a housekeeper. Gradually she got some movement in her left side, enough to stand but not to walk, finally she took the first steps. It was under the direction of a PT who told her: " Never say can't, always give it a try, the more you try the more you will regain". She made that her mantra and finally could dispense with the housekeeper and just have some help in the house. Now she is 84 and knows her body is breaking down and is so thankful she has lived a long and fruitful life. It does my heart good to hear such stories. Vicki lives a long way from the coast so is enjoying visiting the beaches. She loves to explore rock pools and to just sit on the beach absorbing the sights and sounds. Today's visit was to my local beach and she saw an eel eating mouthfuls of small fish and tiny crabs scattering to get what fell from his mouth. She comes home and goes onto the internet to find names for the creatures she has seen. I am glad she enjoys holidaying with me. My latest carpenter had an "Incident" on Friday and rang yesterday to tell me he cannot take on the restoration job. This sure is turning out to be a nightmare. I want the cabin roof fixed, I need find someone who actually wants the job. My Ray would have fixed it all in a weekend and added a couple of coats of paint! Why is my man taken away from me? How fair is life? (Okay, unfair question). And so life goes on. I need to find a balance in life. Eat, sleep, pray, wake , work, play.

I find like Fred that when I am fearful or anxious it helps to pray. I certainly hope you get a solution to this problem soon, it must be so frustrating for you. The family need to know you are safe so maybe arrange a signal to let them know you need help - maybe a buzzer or a bell?

Sally, that is good Carol is walking again. She is a very determined lady. Give her all the encouragement you can. And (((hugs))) from the Blog Community too.

Leah I hope you understood my PM. Your blog setting for comments is not on auto approve so only you ( or a staff member ) can see your comments until you tick the box on the right hand side of each comment and click on approve on the bottom of the page , or change the setting on your "Manage Blogs" page.

Sandy, you got that so right! When we were not there the emotions were the same as when we were there only a tad more exagerated. You simply can't stop someone else from being depressed, they have to choose not to be and take the steps that make that happen. Nancy, hope you are seeing life from a better place now you have had your break. Hope you are already starting to plan that next trip. Sarah who used to be hostsarah and I had a saying to cheer each other up: "Next year in Hawaii!".

Julie, the good thing is that you know Larry can use the cell phone now. It would happen that way with me too I am sure. I used to call Trevor (when he lived here) and hear his phone ringing in his bedroom...lol. I was usually ringing to ask him to pick up something on his way home from work. Constipation is one of those subjects that all caregivers find dominates their world from time to time. Do whatever your usual source of information, doctor, nurse, pharmacist etc advises you too and get help if you need it. It does affect the mood etc of the person with it and makes life unpleasant. Leaves etc...my problem too at the moment because of our blustery winds....sigh.

Yeah Carol! Good to hear she is progressing Sally. With Ray and his many strokes I had to put a smile on my face and take on the cheerleader position every time. It was very hard on him but he managed for 22 years from his first stroke with many set-backs. I am sure your support of Carol is much appreciated. Tell her she is also in my thoughts and prayers.

Yes. it is hard to sit with them and see the deterioration but somewhere inside of them that former person is there, just as it is in us. I used to talk to Mum as if she was still that person. It was hard over the years but I like to think the time I spent with her was as special to her as it was to me. Be there for him all you can. Love him for who he is now and always was.

Nancy - the next time just do whatever you need to go, go out the door, close it behind you and close your mind to home, open it to the world. I learned to do that. It was the ESSENTIAL "me time" that was needed for that long journey Ray and I shared for so long.. I am glad you had a relatively good time and yes, Ray was always depressed and difficult when I got home and I managed that. Remember the song: "They can't take that away from me?" well it is true. So remember the good memories of you and Dan, not the bad ones of recent times. You will find the next time will be easier and he will gradually get used to the idea that you can't be there all the time, sometimes you are somewhere else and he is still okay..

Sorry for your loss Fred, take care of yourself. I kow you will support others in their grief and you need to stay strong for that.Yes, you will see her in the time to come.

It was the anniversary of Mum's death yesterday, she died on the 20th November 2012 two months and one day after Ray died. I went to to her nursing home Carer's meeting in the afternoon. We are allowed to keep on attending the meetings for a year after our loved one dies. It is a good idea as there is still so much you want to say and the meeting is a safe environment to speak about your feelings. I find I can still help others too. It is good to still be able to use all of that experience to help others. I seem to have the jitters tonight. It is the day after the anniversary of Mum's death but it is also the first time I have been able to think about what happened. I have been ignoring it but I guess my mind just waits till I am off guard and then I am reminded again of death and loneliness and the downside of caregiving - the long adjustment afterwards. I am keeping busy as much as I can be and not be exhausted by the effort of keeping busy. It is a vicious cycle, trying to be busy, getting overtired, not being able to sleep because you are over-tired etc. it probably doesn't help that there is a storm brewing and it is humid tonight. I've had a few days this week when I find I am really feeling the loss of Ray. I know what triggered that, I went under the house to Ray's workshop to get something and there are all of the tools rusting away, the fallen down shelves, the many years of neglect. Ray used to spend a lot of time under the house in his workshop, we used to laugh that he was "sorting his nails" as at one stage he did try to sort them by size and purpose. But mostly prior to the 1999 strokes he used it as a refuge, to get away from the rest of us for a while. When Ray had the strokes in 1999 he no longer went under the house unless he came with me when I needed to find something. When he stopped going under thereTrevor and I did try to keep things nice at first but it all became too much. Now there is very little of any value down there. I will have to sort it all out at some stage, at the moment it is in the too hard basket. The best I can do is just a general tidy up as I don't know what is there that is of value and what is not. And when there is very heavy rain as there was last week we do get some seepage so the rust cycle goes on. Then of course there is still the problem of the cabin roof, I did get a phone call from the guy who thought it would be easy to fix, he was keen but the carpenter that usually works with him has too much work on and would not be available till after Christmas! Does it frustrate me - oh yes indeed. I want my backyard to look neat and tidy but there is the problem of the cabin roof, the half-cut down tree (loong story) the mess in the back of the cabin, the trampled down garden, on and on. I would make a list and cross things off as I fix them but the priority is still the roof and I cannot get that fixed it seems. On an interesting note the fencing is beginning next door, just this afternoon two panels appeared on top of the retaining wall out front of the new house. It is a wooden panelled fence, solid, brown and a lot taller than I thought. I am hoping it will be sturdy enough to stand up to the blustery winds, that is will not rot, or drop panels and a thousand other things. My imagination runs along very pessimistic lines sometimes. I just have to have faith that it will last until I want to sell this house. I am not sure I like what is happening next door but I have agreed to have the fence put up so guess that sorted out the problem of me not liking it as I now have no choice. Where is my partner in decision making? I ask myself. It is not fair, why am I having to do this alone etc. I need to hark back to my Dad's father's favourite saying: "If you want a helping hand look at the end of your arm." I know help is not hovering around waiting for me to ask, it was never like that. If I need help with a problem I still have to ring around and finally find someone who is willing to help. Caregivers and widows have that in common. No long lines of people tripping over themselves to help out. At the Carers' meeting I went to I was reminded once again of the hard decisions we have to make, the way we as caregivers have to go the long way around a problem so as not to offend the person we care for or the others who witness what is happening. One poor lady having put her husband into care was told by a relative that they would "take him home with them and see that he got the right treatment". She was deeply hurt but sensibly said that they should see the nursing staff first. Of course the nurses presented the difficulties in a way that made the offer seems so silly. She said they didn't apologise just walked out, leaving her husband with the fantasy that they were coming back to rescue him. Sometimes it is the family that is the difficulty as much as the patient! My family seem busy with a lot of pre-Christmas activities. Trev and Edie had the water from the rain event we had last week pour into their garage and wet all the cardboard boxes they were using packing up their house to go to Broken Hill. Not a disaster but certainly inconvenient as they will have to buy more. Rain events seem more frequent this year, torrential rain as opposed to the kind of gentle rain we need. Just another example of extreme weather. I need to redig drains again as the rush of water also carries silt which makes the drains more shallow and less effective. Always seems to be sometihing the householder has to do. I did have two good things happen today. I went to two lunches. I got double booked so had the main course at one club with my old church buddies, about an hours chat and then into the car and off to another club to have dessert and coffee. The reason for the split was that I wanted to see a young friend and her gorgeous red-headed baby girl, just at the staggering around stage and so cute. This little family have moved to Western Australia and the two of them were just back for a cousin's birthday party on Saturday so today was the only day they were was up here. The young Mum has lost both her parents so some of our Apex40 Club women act as spare aunties. Okay, I have had my vent, updated you on my news, now I better try and get some sleep as I know tomorrow is going to be another busy day.

Dean, thanks for coming back and blogging again. You always have new insights to offer. I have learned a lot form your blogs myself. I wish it had happened earlier in Ray's stroke journey but know a lot of it will help others. I agree: You Rock.

Donna, I guess we always fight even when we know the time has come. I had Ray in the nursing home for 12 months. It was so long in emotional terms. It wasn't the solution I wanted but in the end I could see that it was all I could have done. It is hard to make the transition, hard for him, hard for you. I don't think I would have ever got used to the move being permanent, right to the end I thought:'What if?" But it was what it was. Thinking of you (((hugs))) from Sue.

Fred, take it easy. You have a busy schedule so rest up when you can. I can understand your grand daughter will be sad if her beloved puppy has to be left behind so get ready to mop up her tears. Just blog when you can - no pressure mate!

Sally, thank you for keeping us updated. I am glad she has got to the rehab stage. It is hard to go back and do it all again so you being her cheerleader and others from here contacting her will make a lot of difference.

Ray and i missed a lot of funerals. He couldn't go if it was wet, windy, if there was no bathroom on the same level etc. All you can do is see how you feel on the day and plan clothes etc to suit. We had a similar thing with one of Ray's cousins who wanted to see Ray before he died but never made it and actually died before Ray did. Sad.

Sandy I so well remember that out of control feeling when you are on a steep slope with your loved one in the wheelchair and all of a sudden realise you may not make it! At that moment all you can do is lean back and try to arrive at the bottom of the hill in one piece. It is such a strain on your back. Thankful that Bob recognised that and didn't want you to take him out until you were well again. You do a lot for Bob beyond the call of duty and maybe sometimes he does recognise that even if he does not verbalise it. Sue.

Unfortunately I don't get to afternoon chats, the time difference between Australia and USA is 16 hours so it would be too early for me. But I do think of all who post here and in the forums and add them to my prayers when they are obviously in need. Sally, we are all apt to neglect each other when our own life gets busy, sins of ommission as my minister used to call them, the things we "ought to have done". So I am glad you arejkeeping in touch with Carol on our beehalf, do tell her a lot of us are praying for her recovery..

Last year as I left the Womens Weekend I was very tearful, it was to be my last! But after a deputation approached me in October and said that I MUST go so I went again. Wow, I had such a wonderful time, I just love those women, survivors and caregivers alike. It is like there should be some award I could give them simply for being who they are. I am sure if I met the people I am acqainted with, who have been good friends and supporters to me on this site, I would feel exactly the same. Why are we wonderful? Because we have stared adversity in the face and overcome it. We have done the hard yards, we have out-manouvered all those people who said we could not do it. We showed 'em, we did it! I was not the only widow on the weekend, another woman whose husband died last year had also been invited to come. It was her first weekend and she just loved it. It helped that it was fine and sunny when heavy rain had been predicted and we were able to gather round the pool and use the marquee we have put up each year. It did help that the DJ who replaced dear old Dave did play a lot of Abba, for we are all dancing queens and I have the aches and pains to prove it. The massages were wonderful and I had my first hot stone massage. Not sure I liked it but it is a personal thing I guess and it was a new experience and I know I need to embrace that.The masseuses give us a tremendous discount and the Stroke group is able to pay for it so it is free!!! And so Saturday was swim, chat, have a massage, relax, have lunch, relax, have a swim, shower and change and then the dinner and dancing, dancing, dancing the night away. And how good is that? This was our tenth Anniversary of the Womens Weekends so there was a gooey, creamy Celebration cake. That is the only downside for me, being lactose intolerant I do find I have some difficulty with desserts, all cream, icrecream, milk and butter is banned and so sometimes I just wish they would serve a nice fruit cake instead. We did have a fruit platter on Saturday before the dinner, with our "happy hour" finger food and drinks so I did have fruit, again it is a personal choice. I wish you all had access to this type of weekend. If only there was a benevolent society in America that specialised in womens weekends and could offer you that type of getaway. As usual many women who belong to our Stroke Recovery group didn't come for the whole weekend but only for dinner on the Friday or Saturday night as they just didn't have anyone to mind the one they cared for. In some cases of course some also went home and checked on their loved one during the weekend or kept in contact by email or SMS. After stroke where there's a will there is a way. Again I share the room with my good friend *G* who I used to work with and she and I finished up with a big task. She had volunteered to do the nibblies for Friday afternoon and Saturday and the fruit platter so I along with some of the other women helped with that. It was like market day in our room all weekend with the comings and goings. I was so pleased *G* did volunteer as she is disabled by her stroke, has limited mobility (but just loves her scooter which gets her around) and some difficulty with life but she has the heart of a lion! She is one of my heroes, I am so blessed just to know all of these women, survivors and caregivers alike. And another sweet survivor did take me aside and tell me to never drop out of the group, she would miss me and all I did for her and the group as a whole, and that really is not a lot. It takes so little energy to sit and listen and gently advise if appropriate and add someone to your Facebook or an email list, to send them on an occassional email with those "Thoughts of Wisdom" you often receive. It is part of our humanity that we need community, and it is important that in that group there are people to whom caring is second nature, who are there through our thick and thin times. We can be a part of that by putting our own troubles aside for a while and recognising the need in others as we do here when we comment on posts and blogs. It is not rocket science but it is a loving vocation. And that is my good news and I will cling onto those happy memories for as long as I can. It has been a blessed weekend and a real gift to me.

Sorry Fred, no breaking away now, we need you to comment and blog. Ten years isn't a goal, it is a decade of recovery and a decade of helping others in a different way to what you could when you were able bodied. We look forward to your blogs, I know I do, and if you leave this community we will be the poorer for it. So stay, maintain an interest and let us know how you are feeling from time to time. I think it is great to have the intention of not complaining but when you need to vent you need to vent!

Oh dear Jamie, you have been reading my mind, not on the stroke issues, because with Ray's death that struggle ended, but with the widow issues I am facing. As usual you put into words what was in a lot of our minds. Thank you.

I went to the Stroke Recovery meeting this morning, I decided that I would pay another year of dues. I don't go every month but I still like the folk who go there, the caregivers and the survivors, so it is good to keep up with them. I am not the caregiver any more but no-one seems concerned about that. I am just Sue. And that seems to be good enough. So next weekend I am going to the Womens Weekend. I wondered if I should as I am not a current caregiver but everyone seemed to think I should so I am going. I am sure there will be a lot of time to laugh, sing and be happy, and enough time to share confidences and be sad too. I looked at the caregivers at the meeting and they all looked so tired. I used to look like that. For the last five years of his life especially Ray's illness just absorbed all of my life. In a way when he died I ceased to exist in a lot of people's eyes as I was simply "Sue, Ray's caregiver". I miss the people who were in my life back then, I wish they had kept in touch. But they have moved on to help others. I think I'll just keep up with some of the people who were prepared to be friends with me during his illness and not worry about those who have not kept in touch. I am sure G-d will bring people into my life to replace them. I am still lonely and often still cry at night, really it is the small things, having dinner alone, sitting alone, watching television alone, packing up the house and going to bed alone. I am 13 months out now and yes, it still hurts. When I wake up at 3am crying, and can't go back to sleep I can come out to the computer and play some sad songs on Youtube. I wonder what is floating around my subconscious so I feel sad but don't know why? I know being out of my comfort zone is one reason for all of this. In the daytime I can work hard, tire myself out and ignore it but four hours of sleep later, here I am again, waking up with some worry or other on my mind. As you know I do like to keep busy but gradually increasing the workload is one thing and taking on too much is another. This week and next I am adding half a day selling tickets for Lions to contribute to their Bush Fire appeal. It is a worthy cause and one I wanted to support but somehow that pushed the whole week out of kilter and today I had to do the home communion I couldn't do on Thursday so had to move it to Saturday. That meant leaving the Stroke Recovery meeting early and not having lunch with the caregivers and their spouses so I felt as if I had missed out on something. But it is hard to get a life balance whatever you do. I think my trip to England distracted me from my grief for a while,as did the trip down to Shirley's but I have found it really hard in the past few weeks. As you can imagine it is hard not to have someone to share all those memories with. It is one of the things we had to get to used to as a caregiver and now that continues for me as a widow. The pressure of suddenly having to make a lot of decisions because of the cabin roof having to be rebuilt is another thing on my plate. I have had several quotes now but so far no-one has said they want to do the job. It needs a carpenter and a roofer or a couple of builders. I did have one such partnership come to do a quote Iast week that I would have been happy to hire but so far they have not got back to me. I hope they do so early next week as I do want the job completed before Christmas. One thing they did say is that I will have to clear the cabin out. That will be quite a job and means I will have to bring a lot of boxes down to the house to sort. There is work to do on the back garden too as all that was trampled flat by the SES crew and there has been no sign of regrowth there having been very little rain since then. I think most of my anxiety comes from needing to get a whole load of different jobs out of the way while the weather is reasonable, like the fence on the top side of the block that is now all broken down will have to be replaced soon. Just planning all of this leaves me feeling anxious but I know being out of my comfort zone is one reason for all of this and the timeframe is another. I have also been doing more in the church. No excuse now not to help with Messy Church or the Halloween Party for kids. Don't get me wrong I love doing it but sometimes it is a strain, physically and emotionally.Sometimes when I get emotional when singing my voice starts to wobble. Last Sunday in church I was going up the aisle in a procession and I suddenly chirruped like a canary - so embarrassing! I find the music is there sometimes but not others, it does depend on what we are singing and if it has some emotional connection. I wonder if I joined a singing group if that would help? I've always loved to sing hymns, I don't sing well but I can hold a tune. There used to be a church group from the Uniting Church that sang at Mum's nursing home. They were all older women and a bit quavery but it was not their voices that the residents and staff appreciated so much as they were there, with their warm smiles and afterwards they moved among the residents speaking kind words. Maybe I just need to join something similar and sing with others? .