swilkinson

I had another scary afternoon. I was here for chat Wednesday morning 10am my time, enjoyed talking with the girls and about 11am Debbie farewelled me saying I should go and see Ray. That was great advice. I am glad I went over when I did. I often don't go on Wednesdays as I consider it my day off and do extra housework and some gardening. Ray seemed asleep when I got there so I wheeled him out into the courtyard. I thought he was just tired and would wake up naturally when he heard the chatter around him. He didn't wake up immediatley so I decided to let him sleep. After a while I got worried. I went back to his room and got some cream, took off his shoes and socks and massaged his feet. He didn't wake up. He wriggled a bit and seemed to be waking but didn't come fully conscious. In the end one of the other carers went and got the nurse. She took a while coming but when she took his vitals, nothing wrong. She didn't like the look of him so she helped me take the comfy chair with him in it back to his room, put him on oxygen and he slowly came out of it. All of this took an hour! By this time lunch was well past and his lunch had gone back to the kitchen. I stayed and the nurse got him to take some thickened fluids,gave me two lots and I gave him those and some yogurt and read to him etc. In the end I stayed about four hours. I am so tired now but at least when I left he was pink-faced and starting to answer questions. It is so scary sometimes. I know death isn't scary but the near-death experiences certainly are. I just had a phone call to say Bible study is not on again tonight. One of our participants has her father in respite care and apparently she had a phone call today to say there is an emergency with him. She was hoping this was going to give her a break as although she doesn't live with him but she does put a lot of her spare time into keeping him in his own home. Been there, done that. Seems as if so many of those in their 50's are also caught up in looking after parents and trying to work full-time as well. Says nothing for the "safety net" our government (s) are supposed to provide for the elderly of the community in an effort to keep them in their own home. The person who rang me was working back at work, replacing someone who was off sick, so we all have our troubles and woes. To stay in their homes most older folk need quite a bit iof help and if they don't have the money to provide this themselves there needs to be sudsidies. I know that sounds like I am asking for more government hand-outs but everyone deserves an old age where they are adequately looked after. Working your way through all of the research to get the care is a mine field wherever you are and so many of us give up and accept life at a very poor level. It seems to be a bit of a merry-go-round,and yet we have found our way here to Strokenet looking for help and support and got it, along with a lot of useable information so we are the lucky ones. I have asked to be taken off the roster at church for a while if Ray doesn't improve as I want to give him more of my time in the mornings when he is brightest as well as over the lunch hour. I'll still attend church but leave at the end of the service. I am getting paranoid about him not having adequate food and enough drink to keep him hydrated. I read Debbie's blog "The Spoon" and saw not the funny side of it but the sad side of it, not enough CNA's to feed all of those that needed feeding. After all Debbie volunteered her services but the next time (or in our case any time) there may not be anyone else to volunteer and take on this mundane yet vital job. I did get out in the garden for a while late this afternoon. I am trying to get the potplants weeded and fertilized and ready to thrive in Spring. There was not enough fertilizer, in fact hardly any in the container and so that is another item for my shopping list. I hope to go shopping tomorrow after my visit to Ray. I am back to wanting 28 hours in the day so there is time for me to do what I want to do. Because now I have to find the time to complete the gardening job. I think I will look in the freezer and see if I can find adequate food of a nurtritional nature for my evening meal. I guess no-one is too worried about my intake of vitamins etc but it is all a part of "taking care of yourself".

Geoge color me green with envy. I used to row in my teens, only an old rowboat belonging to a friend's father but it gave me great joy. Something about moving along the water under your own steam that beats having a motor do it for you any day. I'm glad Lesley is doing the daughter thing in New Zealand. Wish her Mum a Happy Birthday from us when you speak to her next. Sue.

As usual you are so right. I will add not being hard on myself to going with the flow as my two "things to do". Sue.

Sandy, when there is a certain number of cases of say pneumonia, any notifiable disease really, in a nursing home there have to be notices in the windows, on the doors etc and all but essential staff are kept out. This is referred to as "lock down".That means no visitors, entertainers, no-one but nursing and cleaning staff. Mums Home has over the notifiable number of Gastro-Enteritis cases so 48 hours after the last case and the place will be open again and I can go in to see Mum. I really miss her and know that in her own peculiar way she probably misses me too. Last year we were locked out for two weeks. Sue.

To say what I feel - I wish that life wasn't such a great drama. I hate to see Ray sick yet again. I hate Mum being shut in, exactly as if she was a prisoner. I want life to get back to being mundane and ordinary and allow us all to get some sort of balance in our lives. I am sure that time will come as it always does. Yes, you are right, I thought for a while I could do other things, but at the moment I can't. So I need to accept that. Sue.

Ray is sitting in the comfy chair asleep when I got to the nursing home today. I was nearly two hours later than usual as I went to a meeting that went an hour and a half longer than it should have. It was a meeting I did need to be at though. Ray was asleep so I sat and read for a while. That gives me something to do. Evenually he woke up and I gave him the drink on his tray. I found a spoon in his drawer to feed it to him with. Thickened drinks go thicker as time passes so this one was like jelly. He couldn't have drunk it by himself. He needs the regular drinks to stay hydrated. Ray had dark circles under his eyes and his breathing was accompanied by a bubbling noise. If he had been running a temperature as well I would have been down at the nurses station pronto but he seemed cool enough. Not another dose of pneumonia I hope. A lot of sounds come from his throat as he has "pockets", caused by older stroke damage, where any liquid can gather so his breaths sound like someone bubbling through a straw. Luckily I have heard Mum doing that over the years and know it is not too dangerous, just part of having a chest infection. When the chest infection clears up the noise goes away. Ray awake seemed slow...very slow. He smiled at me but closed his eyes. I asked him a question, he watched me but did not answer my question. When a nurse came in I got her to look at him and she asked him if he was tired. He gave her a small smile and closed his eyes. She too felt his forehead. She decided to get him put back into bed but said it could be a while as the care workers were slowly working their way up the corridor, cleaning up, changing, putting people into bed. I know it is a routine and do not expect preferential treatment for Ray. When the care workers came in one said to me: "You were not here today, we put Ray into chair specially but you not here for lunch." It was true, that is my usual rouitne and the staff now expect that I will be there to give him lunch. Maybe I am too reliable and it has been thought that I will always be there. Just the question is enough to make me feel guilty...of course I should have been there. What was I thinking? Ray is my first priority therefore... You've all been there with parents, kids, spouses or pets. That situation where you leave one thing undone and your mind says: " you should, you should, you should." Mum is still in lock-down mode so I can't see her. I was looking at a photo today that accompanied one of the slide presentations. It was a pair of old hands. For a moment they were my Mum's hands. I had to hurry out of the room to stop myself from crying on the spot. How vulnerable we all are to "see" the one we love, the one on our mind, wherever we go. Of course they were not my Mum's hands but because I can't see her because of the lock-down there is that guilt, that voice saying again: " you should, you should, you should". My life is too full again, partly my choice, partly circumstances. My next door neighbour on the bottom (western) side is building a new house. He was going to extend the old one but now he is going to demolish the old one and rebuild. It is going to be five bedrooms, two storeys etc. It will be taking up most of the block, casting a shadow etc. I am supposed to put in some objections, I finally got to that as it is due on Monday. I don't really care what happens as I will sell some time in the future but in the meantime I have to live with whatever goes onto the next block so I need to be pro-active to safeguard my house. I hate that I have to do that. I have become quickly involved in the life of the congregation through some welfare issues. I know I don't really have time for that but it is my nature to jump in boots and all and do what I can to help others. Now I have to assess if this is the right thing to do right now. I still have a lot to do with the visits to Mum, Ray etc. Sure there is a need to look outside of my own small circle but if I get too involved it is more stress, more of my time taken up etc. So decision time before someone assumes I'll do what I am capable of doing rather than what I have time to do. And then there is all the other things I am neglecting. I couldn't get to the meeting this month of our old church group, I meant to send out some sympathy cards, I only did one home communion, I still have to buy birthday presents for this months family birthdays etc etc. I did manage to ring Ray's sister for her birthday yesterday. I asked Ray whose birthday it was and gave him the date and he did remember, it is the only birthday he does remember - his favourite sister. She does ring occasionally and comes down maybe once every two years, the other sister he hasn't seen for maybe 15 years. got to be grateful for small mercies...in both cases...lol. I want to be able to make some plans etc to live a week at a time but know that as always it is a day at a time. I want to do some forward planning to make sure I make the right steps necessary for getting the house and yard ready for summer sucessfully but it is one day at a time. Maybe if I list the jobs I can sqeeeeeze them in, sideways if necessary. Yep, one day at a time. I know, I know.

Debbie, whether the new insightfulness is permanent or temporary, enjoy it. Aren't those whole sentences great. Ray now officially has aphasia but every now and again says a whole sentence and it is wonderful. I hope Mary Beth will come to you and you can pamper her a bit, I guess she'll need that. And you can have girl talk for a few hours. She has been your rock and you do need to feel you can be there for her too. As for reaching acceptance, always seemed to get there to find there was another place further on I lost sight of it again. Sue.

Fred, an outdoor BBQ area is good value, glad you finally got arund to it. It will take a bit of getting used to but I am sure you will do it. Ray was a great guy with a BBQ and I really miss that. Trev was coming good but now he has a wife and family of his own to take care of and I don't ask much of him. Hope you do get those extra five years, no reason why not if you take care of yourself. I''ll come see you one day and you can cook me a steak Texas-style. Sue.

Ray was the same about the death of loved ones, sometimes he identified and then it was too overwhelming for him and I went to the funeral alone. It is harder when you have had a bad experience like a stroke or heart attack yourself to get negative life events into some sort of perspective. I too in your position would have had a rest day and tried to get my head around it. (((hugs))) from Sue.

Fred, one sad thing about working with people who are wounded or sick or elderly is that some will lose their battle and die. It is so worth while doing it though, supporting people who have little support from elsewhere. I am glad you posted this as it is a good reminder to all of us that life is fragile and not everyone goes on to live an improved life, some just battle on the way they are. You are a good man Fred and although you might not get a lot of praise for what you do remember there are silent witnesses to all of this , the families of those you help. May what you do for their loved ones inspire the next generation to also be helpers in the community. Sue.

I just hate the sound of the wind howling, the rain slashing, the waves (two streets over) hitting the rocks and that lonesome feeling that comes calling again. Why am I alone, why am I here by myself, where are the friends and family that should be supporting me? I know they all wish me well but that is the extent of their care. I so hate being alone some days. I have been out to see Ray as usual. A wet Saturday and not a lot of visitors are around because of the weather. There are music videos on in both the lounge rooms so you take a choice, country and western or an old Barry White concert? Settled for the country and western as some of those romantic love songs get to me now. It would be okay if it was just the two of us, seems so WRONG in the nursing home setting. Yes, I am taking things too personally today but that happens sometimes. What do you do about the problem of being alone? One of the old friends we have made since Ray has been at the nursing home expressed it this way today: "I hate it when all the family tell me they are busy with their own stuff and I just wish I could have half the life they have." Yes, the jealousy bug has me again too. I want that warm fire and a big cuddle, or why get out of bed at all on the wet winter Saturday? In the old days we would have been snuggled up, not sitting primly side by side with Ray, slipping forward in his wheelchair and sleeping yet again while I watch a video in the middle of the morning. Did I mention it all seems so wrong? I do get sick of being Pollyanna, I know that is my personality but sometimes even I get sick of trying to be upbeat, trying to have a smile on my face, seeing others having a good time...well you get the picture. Another session on the pity pot. I've had a tiring week. I guess attending two funerals, a lot of rain and not much happy company has something to do with how I feel. I know that sooner or later the sun will be back and I will feel better but for the moment my mood is as gray as the skies. Mum was very quiet this week. We went to the church service in one of the big lounge rooms together on Thursday and one of her room mates was parked in her comfy chair behind Mum's comfy chair. This lady is mostly silent now but she chatted to herself all through the service, or rather not to herself but to her old friend Betty, gone for 22 years now. The talk went something like: "gabble gabble gabble, Betty, what do you think?". I know none of it made a lot of sense and it was silly to be excited about it but I haven't hear this lady talk so much in a long time so it was good to hear her vocalising. I guess I really miss that with Mum. Sometimes when I am in a "poor me" mood I reach out to others.If I am lonely I can guess that some of my widowed friends will be feeling lonely too. That mustn't have been so as I rang four of them, left four messages on answer-phones and only one rang back. So obviously some families are doing something with their oldies. Or maybe, the day being the way it was, they were doing what I should have done, curled up in a warm bed and sleeping through the day. Even the cats next door were asleep when I went over to feed them. Note to self - sleep the next rainy day away. I was able to contact an old work colleague who has had a rare kind of stroke called a "spinal stroke". Apparently it is caused by a blockage in the veins that feed the bottom of the spine so renders the person a paraplegic. She has been in hospital and rehabilitation unit just on six months and is finally seeing some progress. She has feeling but no movement below the waist. She said she had driven a car for the first time using just hand controls and had been told she could probably go back to driving when she gets home. Her home has to be modified a great deal and she knows that could take a while but she has plenty of therapy to keep her busy.l was glad to catch up with her as we had been good friends when we worked together. Maybe I need to re-arrange my life again, try to think of something new to do or do something in a new way. Maybe it is time for an outlandish new hairdo or maybe when the rain goes away I might go get that massage. I've always got plenty to do, some days I just don't have the energy to do it.

Ruth so good you and William had such an enjoyable evening. Building more good memories. Sue.

Fred. from time to time we stop and access our lives and i think that is what you are doing now. I go in and out of childrens work, in and out of working with old people. The more involved you get the sooner you burn ou., BUT the more involved you get the more good you do and that is what people really need, someone to walk right alongside of them. Whatever you do I am sure you will do good. Sue.

Sandy WAGS is a group in the Stroke Recovery organization. We have other Stroke Support groups locally (in a 50 km radius) here too. Our group also meets up with some of the people from WYSS GUYS, who are older men who live in the Wyong Shire the next council area ( you would say county) over. I did give a talk on my involvement with Strokenet some years ago and a few people joined but most, I find, have come to the group because they are looking for local contact. I can ask for Ray to be put into a wheelchair but it takes time as he has to be moved with two people using a Standaide and this includes being transferred wheelchair to wheelchair as he can no longer support his own weight or lock in his knees to remain standing. They did put him in a wheelchair yesterday and I got there two hours after this happened and he was already leaning to the left dramatically, so I prodpped him with pillows, had him in the chair another hour to feed him lunch and then asked for him to be put to bed. Ray has lost a lot of strength in the past three weeks due to extensive bedrest to help with the pneumonia and I don't think it is known as yet how much of that he will get back. Sue.

That is such gret news! I know from Ray's recovery from the two 1999 strokes that we cheered as each improvement happened and what a difference little things made in our lives. I think sometimes we forget that recovery is about an improvement in their lives that also affects our lives. I think back on the 10 or so bus trips we had from 2002 - 2007 when back in 1999 he thought he would never walk again and how he walked around the boardwalks and along beside waterfalls etc, seeing the same as everyone else yet at a slower pace. Every forward movement is good, who knows where simply being able to raise both arms may lead to? Sue.

Katrina, you are an overcomer, so look at what you need to do the next step and then find a way to do it. F0r instance you could ask a friend to come to the pool with you so you have someone handy to help you in and out. See if you can find a strip of velcros that you can use to attach your foot to the pedal of the bike. You are always moving forward and I admire that about you. And you are willing to go back a step in order to go forward again. Enjoy the rest of your summer. Sue.

I have just got back from the WAGS (working aged group for stroke) meeting. Ray and I joined this group five years ago and they have provided fantastic support, for Ray at the Scallywags (men's) group meetings and for me at Carer's dinners and the annual women's weekend. Without fail the convener of the Scallywags group asks me for a report on Ray that he can take to the group. He joked that they always look at the plate with pieces of cake left over and say: "We should take this to good old Ray". I often scolded him for eating all the leftovers - and him a diabetic! It is nice that they remember him with affection. I have always had such a good time at the Women's Weekends. No group of women could have been better therapy than the ladies of this group have been over the past few years. We have laughed and cried together, told our stories, asked our questions and been better than sisters. But now I feel as if I have moved on to a new area of the stroke journey and they as yet are not able to relate to me there. They've all asked me to go to the weekend as usual in November but as yet I am not sure I will still fit in. I also belonged to a Dementia Support group but I feel the same there, they are all still dealing with hands-on caregiving and I am not. I fit in better at the nursing home support group at Mum's facility as we are all supervising the care of someone in a nursing home and coping day to day with rebuilding our own lives around the constant visits and the call-outs from the home. I can relate to both those with a Mum or Dad in care, and those who have their spouse in care as I am dealing with both of those events. But people do not fit neatly into pigeon holes and so I find that wherever I go I can help and support someone. Today one of the ladies told me she is trying to support her Mum as her Mum has to find a nursing home that will accept her sister-in-law who has dementia and can no longer cope with that at home. This woman knew my Mum was in care for the same reason and we discussed some options. Support is where you find it, hopefully among the people who have had a similar experience but are further down the track than you are and so more focussed on the big picture. Today I handed in my "Carer of the Year" trophy. I have a small plaque that is permanently mine so I will always remember that I was awarded this honour not just for what I do/did for Ray but for what I do in the community and on here. A lot of people are amazed that I have been a chat host on an American stroke support site for six years now. We all tend to see the world in a very narrow focus so we see our family, our street, our group or our community but often fail to see the people who need help and support beyond that circle. There are so many in a similar situation, and the need for support is world-wide not just a local focussed need. I also belong to a local stroke support group online and have been urging them to join this group also as it has many more members, more daily activities and lot of good current information on the treatment of strokes that I have found so useful. And of course, as has been my case,there are friends to be made who are willing to share our troubles and woes and our joys as well. I think it is hard enough for people to reach out anywhere (thinking of all the lurkers who read but never post comments) but we have to be grown ups rather than children who have a fear of the stranger. I have always like the saying : "Strangers are friends I have not yet met." Just lately I am more aware of how little I know about anything. Today our guest speaker from within our group was a lady who had her first stroke at 26. She had more than one AVM and the surgeon then proceeded to surgically fix another two, one being considered too dangerous to operate on. That woman has managed to hold down a full-time job, get married and with her husband, travel extensively. We were amazed at her adventures being one-handed in a two-handed world. She has a delightful sense of humour and I think that helps a lot. She has recently retired at 55 fearing she was slowing down and not giving her employer value for money. But because she thinks she still has much to contribute to life she is now doing volunteering work instead. Her story really amazed me, she has such an attitude of gratitude. I am unable to visit Ray for a few days as I have just had a tummy bug and so have to stay away from the nursing home for 48 hours after the symptoms go lest I infect anyone there. Typically of course the sun is now shining brightly so I could have taken Ray out in the sun. He still has the chest infection but it is no longer pneumonia so a nuisance rather than a life-threatening illness. Sadly he has been in the long wheel-based comfy chair again the past week, not the wheelchair he can manage to move himself so it looks like his life will be more restricted now. And for me it looks as if his days of sitting in the sun in the park are out of range now with me pushing him there in the chair as the chairs are bulky and very difficult to manoevre being heavier and more awkward than an ordinary wheelchair. So, if you feel you need support, look around you, there are a lot of others on here who live in similar circumstances to yourself, dealing with the same problems, feeling the same pain and are waiting for someone else to say "let's be friends". As we all know the friends we once had are gone, children and other family members tire of us and yet life must go on. Sue.

Debbie I am hopeless with financials so opted for simple accounts that I can understand. My sister is a whizz at financials so she and her hubby are millionaires. I am just rich in friends...lol. Hope you figure it all out to your best advantage. Sue.

I've been on this journey a long time and have found this transition so hard to watch, the stumbling walk of the runner, the muddled thoughts of the writer. But with practice, with time, with help some of it was resoloved and the new person, the one we loved so much, emerged. Sandy, find some help for his writing as well as the other factors you are trying to fix. Journalling might be the answer, but so might copying what others have written, reading out loud, singing (uses a different part of the brain) chanting and even reciting poems, nursery rhymes etc. It is just another form of practice that helps the brain wake up again. In the meantime just enjoy Bob being Bob. Sue.

Fred, another inspiring blog from you. I too have climbed a mountain or two on my life's journey and travelled through the Valley of the Shadow too when I had viral pneumonia in 1991. But my faith, my family and my friends have always pulled me up so I am happy to sit on the mountain grass and rest for a while, ready to make the next part of the journey. Sue.

Bonnie, you will settle. It is a long journey, to being alone and a widow,to finding a "new you", to being comfortable with all that you have been through. You are a wonderful woman, an icon to me and I know yu can do it. Don't struggle alone, reach out to those who value you as we all do. (((hugs))) from Sue.

Kelly, it is about closeness, you were very close to your Mom, they were less so. They need things to remind themselves that your Mom lived, you do not. Find a way of distuibuting her estate without rancour, in the future you will be glad you did. In the meantime go easy, healthy food, long sleeps, gentle in your mind. This too will pass. Sue.

Dave you are a man with true grit. Sue.

I think it is natural for a high achiever to want to be a hero. The higher up the ladder though the harder the fall. But Bob will still have that ability to be a spokesperson, many have become a spokesperson for their disability group. I can think of a lot of examples not the least being Christopher Reeves. I am a Lion and at our inductions we often refer to Helen Keller, who was blind and deaf from birth and yet became one of our inspirations when she told our founder Melvin Jones that as a group we should become "Knights to the Blind". Our Sight First Foundation is just that. We are not finished when life draws us a difficult barrier, we are not vanquished when our life goes off the rails, instead we become a different "Bob", just as "Bob" as before but in a different way. Able to relate to people who are not the same group as before but now of the same group as we find ourselves in. The old personality with some new news to bring to others. I read a lot of biographies as it suits how I think now. Maybe there is someone who has struggled back from the edge who can insptre Bob. Or maybe Bob will be the one to inspire others. Sue.

Kelly, you looked after your Mom for years so it will take a lot of time to adjust to her no longer being here. As you are grieving for your Mom and the life you had together both prior to the stroke and post-stroke you will go through all the stages of grief. I know we caregivers all think we have pre-grieved as we go on the stroke journey but there is still a lot of adjusting to do and a lot of sadness goes with that. But your household will gradually get back to some kind of "new normal" and life will eventually be worthwhile again. But life after losing a loved one, like any other change it will have hiccups. If you suddenly notice you are not sleeping, feel unwell, have bursts of anger or what you feel is too many episodes of crying do make a call on your doctor. My condolences to you and your family for the loss of someone you loved so much. (((hugs))) from Sue.