swilkinson

I am with Leah, retirement will give you opportunities that you could not take when you had to work. You and William will embark on a whole new and exciting life together. And do keep the caregiver if you can afford to so you get that "free time" we all as caregivers need. Yes, I have been there, done that with a new manager, luckily I had some spare days and took them off due to sickness (well he did make me feel sick). Days off always gave me time for reflection and some new perspectives and at that time I could not afford to retire, Ray's two major strokes in 1999 forced me to do so. Thanks for updating us, I know some of us were worried for your health over this issue, now you will have peace of mind. Sue.

Mary Jo, it is the memories from the trip that are important, the feeling that good times are still possible. Congratulations on your anniversary and the way you and Dan celebrated it in style. Thanks for the update, I miss my special friends when they are absent for a while. (((hugs))) from Sue.

Leah, I am glad you had that long term policy to provide the care you need and the help and companionship of the people who attend you. Is it truly G*d's provision for you. You have remanined strong in the past twelve months and seeing this as a turning point and an opportunity for a new beginning is wise too. I am still in a holding pattern a month out from Ray's death so can appreciate a lot of what has been going on in your life. We are all sisters in our grief and in our determination to overcome. Sue.

Thanks for joining our Blog Community and I hope you will find blogging therapeutic as so many do here. We are here to support you on your journey. Well done on your first blog. Sue.

I am slowly, oh so slowly, breathing in the reality of Ray's death. It is easy to fill my days with busyness, to cook, clean, weed, shop, exercise, walk and find so much to do to fill my days. There are still a lot of tasks to do, I have just finished writing the "thank you for the flowers" letters, 8 of them, to loving and thoughtful friends and thanks yous to the three Clubs we belonged to that also sent flowers. The lilies we put on Ray's grave, the rest I had here until they faded and died. But sooner or later I have to lay down and sleep and that is crunch time. No more evading the reality. I am on my own now, truly alone, just me to oversee my life, to make the moves, to do what there is to do. Yes, I knew it was coming and to a certain extent planned for it to happen but still it is a state of being I just need to learn to live with now. It is like becoming a different person, not all at once but a piece at a time. I got a letter addressed to "The estate of the late..." that was hard, harder are the cold calls which ask: "can I speak to Raymond please?". I wish I could speak to him too, I spent so much time in the past year doing that, sitting by his bed, sitting by his wheelchair in the dining room, the lounge room, out in the courtyard, sitting speaking to Raymond. Now I can't. Friends are kind but they will go back to their own lives, they all have busy lives. It is part of the world we live in, being busy, busy, busy. Some I thought would contact haven't, maybe Sue without Ray is different, a single lady, not a member of a couple as they still are. Maybe they are afraid I will pour out my troubles to them or frighten them by describing the last days, which I am busy trying to forget. I am still the same person, aren't I? I am taking the advice of close friends and where I can I do accept invitations, so I had dinner with Trev and family on Thursday night and coffee with a friend yesterday. I will eventually reach out to others but not yet, at the moment I am still in self-preservation mode. Those of you who have had a bereavement will understand what I mean,I am not ready yet to be "out there". I did go to the Lions dinner on Tuesday night but didn't agree to join in any of the current activities. That too will happen eventually. The Christmas Stocking roster is out already so I will fill in a few spots a week, get myself dressed, go out, smile at the people, try not to cringe when people ask: "and how is Ray?" as I know they will, there are old acquaintances we only ever caught up with while selling Stocking tickets. I will have another older Lion with me and he/she will pat me on the back and say "never mind when my ... died...". There are a great number of grieving people out there. I have been visiting Mum twice or three times a week. She is mostly sleeping now. I interviewed the nurse at in charge of Mum's section in the nursing home. I had a call to tell me she is "palliative only" now. In my opinion she has been for some time, this is just confirming it. So she will be allowed to reject food and drink, sleep when she wants to sleep, even miss a shower if they think it will disturb her. It is sad they have it all in writing now, almost as if she is being written off. I knew it was coming, I just don't think I could deal with her death so soon after Ray's death. But if I have to I know the strength will come from somewhere. My faith tells me that it is so. It is one day at a time, one foot in front of the other, look around and see what needs to be done and do it. It is trying to pick up the routine things again and going through the motions. Some of you have been there, done that, some of you have not yet experienced what I am going through and will think "that is something ahead of me that I don't want to think about". Please do think about it, line up your ducks. Remember we all have to go through it sometime, with a parent, a partner, a spouse whoever you look after,all of us are vulnerable. Being prepared is a good thing and does take some of the stress out of the event. If you have made some preparation, a power point of photos, a eulogy that I had previously prepared to be updated were the two things Shirley and I worked on in the days between Ray dying and his funeral. With Mum I have done those things already. But I just hope I don't have to use them soon. Sleep on Mum.

Going through a sad time myself with Ray's death just a month ago. But I am able bodied and I will recover. Katrina I am sorry you feel as you do. We do admire you here on this board for the way you have progressed and fought to get where you are today and I am sorry that is not making you happy. Maybe for some people, well or not, happiness is illusive. Sue.

Debbie, enjoy your weekend and your time with your sister. Girls time is special time. You need it and with all the laughter will reap the benefit. You do well to let some of the issues slide. Pick your battles, don't hit the brick wall and you avoid the bruises. Sue.

Since the family went home the house is quiet. I know it was quiet before with only me here but it is a different kind of quiet now. I will have to get a new stereo and blast the quiet away. I am sad now too. While the family were here I tried to keep a smile on my face. That can only be kept up for a certain time and it becomes a strain. It is like trying to be something you are not. Now if I am sad I can let tears run down my face, wipe my eyes, wash my face and it is all over - for now. I have been surprised by all the cards I am getting with condolences from people I have hardly heard from over the past few years. As a caregiver you think that because no-one visits that no-one remembers you, that your friends have fled, that your family are always too busy. Now that all seems to be melting away. People are remembering Ray as he used to be, the gentle, helpful, friendly man that so many people knew and loved. Why did his illnesses cloud the issue and make his friends stand at a distance rather than be close by to help us? We are all human, all frail, all helpless sometimes to know what to do, how to help. We have to forgive others for that. It is such a pity that compassion is so overcome by the fear of the unknown, the unarticulated, I would have thought that we, a mature and knowledgeable people, could have overcome that by now but it seems not, we are still afraid of illness and death and the "otherness" of mental illness. I wonder if the generations that follow will do better? I hope so , for the sake of my children and grandchildren. I have made a little progress with the paperwork, still awaiting a lot of forms that will start the changing over of the bills to my name, I think the providers don't really care whose name they are in as long as someone pays. Other things will take longer but it doesn't matter, there is enough to keep me going. I will slowly get back to the things that are important in my life. I go to church but cannot concentate enough yet to be part of the team. I will go back to Lions and to various other meetings before the month is over. tI doesn't do to stay at home and mope, I need to be out among people again. Today something weird happened. I locked myself into the spare bedroom. I have been having trouble with the lock on the door and today it locked itself with me on the inside! I rattled and banged and twisted the handle but nothing happened so I had to punch out the flyscreen and climb out the window onto the verandah. I threw out pillows to step down onto and managed a dignified landing. Looks like I need to get a handyman in to fix some of my problems before a disaster happens. There are a long list of things that need to be done here so I will have to work out what is priority and what can be left a while. I need to spend what little I have access to wisely. The house is suffering from long term neglect. All I have been doing is having a quick look at the problems that have occurred and done some kind of fix, now I will have to look at fixing things for the future. It is not something I am good at but I am going to have to learn what needs to be done and get someone to do it. This is the house that Ray built onto three times. It started as a single bedroom cottage and now has three bedrooms, a front verandah and a back patio. It was big enough to raise three kids in and has been big enough to host visitors and returning members of the family. When Mum and Dad came here in 1999 to stay with us while Dad spent his last four months on earth we had Mum in the front bedroom and Dad, at his own request, slept in a hospital bed on the back verandah. Sometimes as I sit here late at night I imagine I can hear him snoring but I know it is only the sound of the wind in the trees I can hear. My friends are already questioning what the future holds for me. I am not offended because I know it is natural to wonder what is ahead. I am going to stay on here for a couple of years if I can. It would be foolish to sell hastily and I have a lot of cleaning up to do. Of course it is possible the house will be purchased and demolished, good land on the coast is hard to come by so people do do that. I will not worry about that now. I just need to keep walking forward a day at a time and let G*d take care of the rest. .

I am not a "why me?" person either. I try to look at the bumps in life's journey as a challenge and slowly climb over them. I climbed out of my spare room window this afternoon as the door locked and I couldn't open it. Time for a handyman's visit I guess. I'm glad you have picked up another family member to join you in your Christian walk, the destination is not in question but the compnay on the journey is appreciated. Sue.

Glad Lesley is back. I was amazed at the road kill deer turning into something useful for feeding you both this winter. Almost manna from heaven. Isn't life full of surprises? You have done well to fit in all you do but exercise is a priority. Don't lose all you have gained. Keep that fihsing next year in mind and go your hardest. Sue.

Debbie, there is a lot of compromising in the stroke journey. But you have to accept that if you collapse all that you have built here will collapse with you. So accept some things that you consider second best in order to maintain your own health. I wish I had had someone in my life to gauge when I really NEEDED that shower and nap, it would have made life easier from time to time. Now is the time to plant a few trees of your choice, they won't act as a screen right away but will give you an interest as you watch them grow. What the neighbours think? Who cares. As Ray used to say: "They don't pay your rent." You are doing all you need to do right now. Work ethic? Is she/he kidding???? Sue.

It's about time you got a break. The gift of the lifting chair seat...you will be grateful for that for a while to come. Whenever you feel down think of all the good things that have happened. It is such a struggle to make the money go the distance sometimes that you can feel the world (or at least the commercial world) is against you. And funny how companies are so fast to take your money, so slow to give it back! I hope this is the start of good things happening in your lives. Sue.

Dave, well done, that is an incredible time for your first time back. I am sure you will better that time in the future. Take it easy for a few days and then go back to training if you can. Sue.

Nancy, you do what you need to do. You do everything in such good heart and I am sure that rubs off on Dan. Hope he is over his cough/cold/virus soon. Sue.

Thanks for the update Debbie, you are one of our long haul caregivers and anything you can pass onto the newbies here is very welcome. i know you came on about three years ago, two years after your son's stroke and were struggling then so maybe you can do a blog on how things change and why? Thanks for being here. Sue.

Lydi, welcome back. I have been missing a lot the last few weeks but will eventually catch up with everyone. Yes, living alone takes some getting used to but I think it is doable, for me anyway. SUE.

Fred, I am glad you came through all the tests so well. We all get more fragile as we age but there is plenty of good life in you yet! Sue.

It is two weeks today since the funeral. My daughter and family are still here and go home tomorrow. Then the house will be quiet and empty and I will learn what it is like to cope with that for however long I need to. I still have that moment when I look at the clock mid-morning and say to myself: "Time to go and see Ray". It is like an automatic reflex and remains programmed into my brain. I still listen for his breathing in the night come to that and it has been well over a year since he has been here at home. Spring is shudderingly cold most mornings still. Daylight Saving started at the weekend and so we have longer days but still cold nights. We will eventually get summer I know but half way through Spring I want it to be a lot warmer than it is. As part of the grandchildren visiting we have been on picnics and to the local beaches and seeing young children playing in the surf amazes me when the water temperature is still low but I guess we did it as kids too. The two here plus the other three grandkids played in the surf last week when Shirley and family went on a picnic with Pam and family of course they were only to paddle but managed to get wet all over and came out shivering but happy. People have been so kind. I am still getting cards through the mail. Just on 200 people attended Ray's funeral and yet I get a couple of people each time I go to our local shooping centre come up and express their sorrow and tell me they would have come to the funeral if they had known sooner, if they had not had a medical appointment, not had to mind the grandkids that day (school holidays) or had something else pre-booked to do. I understand as I have been there too. I am still sorting out paperwork, have found some documents and are still searching for others. It is an on-going task. I visit Mum still twice a week, Shirley has been with me a few times, it is easier with two of us. She is mostly in bed and mostly asleep but we have had a few visits where she is out sitting in a chair and we have wheeled her outside. I often wonder what she sees, hears and experiences in the depths of dementia and with no ability to communicate. Her sightless eyes still turn towards us at the sound of our voices so maybe she is conscious of our presence, maybe not who we are. A couple of people have been buried from the church since Ray died, it has been a busier year than most. The flowers off the coffin sit under the altar on the Sunday after a funeral, a reminder to the living. I have not had the energy to do anything in the church since Ray has gone. I will get back to it. I have to go to an old friend's funeral on Thursday. Death, like life, goes on. Our Lions Club wants to do a tribute to Ray so I prepared some material for that. No-one knows him like I do. Isn't it sad? They were good to Ray so I want to do what is right. There seems so many little things to do. I have just posted off a few cards to friends afar, those who are not on the net and so have not heard. I remember I had to do a lot after Dad's passing, not so many this time as our friends are younger and more computer-savvy. My friends are sometimes worried about what I will do and feel when the kids go home. It is back to one-day-at-a-time. I am telling them; "be prepared to be asked out to have a coffee". I have always got by with a little help from my friends. I know some relationships will change, I have that experience from the strokes, the illnesses, Ray's year in a nursing home etc. I know some people are avoiding me as they "don't know what to say". Really we all "don't know what to say". I am remembering to breathe, weeding the roses, getting some time in the sun some days when it is not clouded over. I know I will change. I think I will call myself: "The Widder Wilkinson".

Most of you know that Ray died on 19th September, late in the afternoon. I haven't got the death certificate but likely cause is the pneumonia he couldn't get rid of plus a lot of other factors. As we all know Ray has been seriously ill for some time. I had been with him most of that day and the three days before but had gone home to have a shower and come back. A nurse rang for me to go back but he died before I got there. I was relieved as he had been struggling to breathe, for two days had refused food and drink and really was just so tired and yet could not sleep. The doctor ordered pain relief and put him on oxygen and the nurse who was with him said his passing was peaceful, Shirley and I and Trevor all went and sat with him for a while and our other son Steven came with his work partner Phil and picked him up and took him to the funeral home. I guess that is as much as you can do. Since then I have been making and receiving phone call after phone call as friends find out and ring with their condolences.There is so much to do but I still have Shirley here and we are doing it a bit at a time. Shopping lists are everywhere, growing and growing. As our local paper does not come out before the funeral we are having to notify as many people as possible by phone call, email and Facebook. I know that is not an ideal situation and less personal than I would like it to be but it is the best I can do. Sure I will miss telling a few people and they will be mad at me but then if they have not been in touch recently how will I know if they wanted to know or not? Three out of four of Ray's brothers and sisters are coming - one sister is "just too busy". Our minister came yesterday just as the funeral arranger (a nice Salvation Army lass who knows Shirley) was finishing her work and so we have the funeral arranged, the plot selected, the program for the funeral written out. We are not catering for the afternoon tea but will pay a small sum per head to have the church ladies prepare and serve it for us. Hour by hour it all seems to be coming together. A few friends have called in and spent time with us, Trevor is here every day, Steven calls a few times a day, even my sister came to visit with us today. It is just as well we have cakes in the freezer and a lot of groceries we purchased yesterday. I have had great support from our Lions Club, Apex40 Club, church friends old and new. A lot of you lovely people have posted me messages, sent emails, posted on Doreen's thread or on my Facebook page. Thank you so much. I cannot tell how I feel as I am simply trying to make sense of it all. Oh to turn back the clock and slow time down and have some time to come to terms with it all. But sensibly there are a multitude of tasks that need to be done and I have to do them with the help of others. Club memebrs from WAGS our stroke recovery group have urged me not to withdraw, to continue to be a member, attend meetings etc. It is too early to make those kinds of decisions. Our minister said I am the kind of person who will keep busy as I usually do but to look out for the fall over the cliff that brings back hard the love now lost, the things no longer shared, the precious memories no longer created. I "know" all about that but I think knowing isn't everything, we are all human and do our best in every situation but acceptance is always hard won. I need to have a plan but need to opt out when I need to, nothing like a nanny nap when needed or a walk on the beach. I have friends on standby for cups of coffee or just a chat when I feel alone. I don't know how I will go, just again need to take it one step at a time as usual. I have asked the church and other organizartions to give me some time off and time out. No I will not be preaching the sermon on 30th of September, I am not going to a Lions meeting or taking on any outside task at all. There is still so much that will need to be done plus Mum to visit in her nursing home. I am expecting a deluge of paperwork as I sort out what is left of our financial affairs. It will take time, time, and more time. Shirley's husband Craig is coping at home with the little ones, his mother who is visiting and has been sick herself and the tasks he still has time to do for his Salvation Army Corps. He is in touch with Shirley a few times a day, catching up with our news, asking about tasks she does and he usually doesn't do. Luckily the chikldren are now on holidays for two weeks and Shirley and Craig are on holidays too as of Monday. Craig and his two will be coming up then, delayed a day as he will have to take his Mum home first. I am looking forward to them being here.But I will make sure they move on a few daysafter the funeral and enjoy some family time. I will be okay or not depending on the day. Thank you for your ongoing suport . Sue.

I agree with Debbie, there was a crisis but you handled it. With all you have to do one or two things will be forgotten. Forgive yourself and move on. The teachers too would have learned a lesson, if things had gone bad they maybe would have been investigated and maybe found guilty of negligence as he was in their care. All stroke survivors have this in common, dehydration happens fast with drastic results and sometimes irreversible damage occurs. This time it didn't so there is much to be grateful for. Sue.

Thanks friends, only God knows the outcome this time. The antibiotics no longer work so we are not feeding Ray now. He is not taking fluids either. He is barely conscious. Keep praying for us please. Sue.

My Mum's old pastor had an interesting saying about reading spiritual books. He said it was like eating chicken, we put aside the flesh (what will nourish us) and throw out the bones (those things that are hard to digest).I think that is right. Sue.

You know we missed you and your wit and wisdom. You help many people here, more than you know as some people read, pick out what they need from the available advice and never post a comment of thier own. I will be happy to see you back in chat again, we missed you there too. Sue.

Ray has pneumonia again. I don't think he actually gets over one chest infection before starting another. He aspirates food into his lungs all the time so sets up bacterial infections in his lungs. Antibiotics work on the side effects eg pneumonia but you cannot vacuum out what is left of the infection in the lungs and start again. So the next cycle of infection begins. This means I have spent a lot of time with Ray the past week, longer hours as I go earlier to sort out what is happening with the nursing, stay to feed him lunch, stay to watch him until he goes to sleep. Ray was only out in the sun twice last week. I didn't visit Monday or Tuesday as I had another attack of the runny nose virus, we were outside on Wednesday then he spent Thursday in bed tired out and Friday he started with a fever again. He will probably be in bed for the next few days. I know he is seriously ill now. Yesterday and today he did not finish his lunch, today he got only half way through the main meal and closed his eys and refused to open them. I couldn't even tempt him to try the sweets, I know when he does this things are pretty serious. If the staff think he is becoming dehydrated they will send him to hospital. I prefer not to go down that route but I know they have legal obligations. I don't want them to come under any kind of legal cloud. On the whole the staff have been very good to Ray and kind to me so I want to spare them anything which might be too tough for them to handle. I want Ray to pass away there when the time comes if it comes in a way where that is possible, hospitals are so clinical that a death can be cold and hard for family members as well. I am not saying Ray is dying, how would I know that? But I am saying he is at this moment seriously ill. In the midst of all this I went to a glorious wedding yesterday. The couple met on the internet, Dave is a stroke survivor, his wife is a wonderful bright, chirpy English lass and they are the best couple I have met in ages. Together they planned the whole wedding, her Mum came from England, they gathered what family they had, invited distant family and friends. Twenty seven of their friends were from the Stroke group WAGS, including the matron-of-honour and her husband who gave the bride away. Anyone who has avoided joining a stroke group please join one, you could be in the same happy position as I was, invited to a wedding. So yesterday morning when I had a "come to see Ray please" call I was devastated as I thought I would not be able to be there. But the nurse on duty rang the emergency doctor who reissued antibiotics, told the nurse to get the local doctor in if she could and so all I had to do was sit by him while they did half hourly observations and then after I had fed him lunch and he was settled they told me to go and enjoy myself. And I did, and there was DANCING! Yeah! This evening Shirley is coming to take me to a lunch in Newcastle, about 1 1/2 hours drive from here. It is for parents who have a son or daughter as an officer in the Salvation Army and it will be the first one I have been to since she became an officer. It is just nice we will be doing a mother and daughter thing. I've told the NH staff I will not be there to feed Ray tomorrow. I am hoping the antibiotics will start to take affect and he will be sitting up in bed smiling when I see him tomorrow night. I can but dream. As you can imagine all of this is a strain on me, I am trying to get through it a day at a time but it is all very emotional and challenging. Do I want him kept alive at any price? Of course not. Do I want him given whatever the doctors deem would be a suitable treatment? Yes I do. To keep someone alive artificially was never an idea Ray or I would contemplate. To allow someone to die in pain is not our idea either. I guess what I want is for Ray to die with dignity and I want that for myself too. I am not making a big fuss about what is happening,my kids know, that is all. This journey has been so long that Ray's family are no longer interested in what is happening to him on a week to week basis. Our friends are supportive but have their own lives, their own troubles. I think I just have to go on living a day at a time and not creating a drama out of life, just coping with it as it happens. A woman at our table at the wedding, also caregiver to a stroke survivor husband summed it up when she said :"Life is pretty tough and we need to appreciate special moments as they come along". That is spot on.

it is awkward when you have a routine and it is interrupted by something like the pool closure but you are resourceful and will com e up with something else I am sure. It will give you some down time too so make at least an hour a couple of times a week "Ruth time". I was of the same mind as you if Ray indicated he wanted to do something I did it. Sue.