swilkinson

We have a campaign called "No means no" and that applies in marriage too. If you and Sam are through as a couple stick to "No means no". Sue.

Let's face it Debbie, you were not on chat and so Kira missed her "cat call". Be a responsible pet owner and make sure you are on next week. I know that too tired to see where I am going feeling. Maybe next time get a white cat or one that glows in the dark. (((hugs))) from Sue.

Lydia, this is all so hard. My older son is separated from his wife and I so feel for my three grandchildren - they deserve better than this. My thoughts are with you. Sue.

Finding songs that empower you in a great idea. Also make a list of special treats - a long bubble bath is one of my favourites with music in the background. Also make a list of your supporters and ring one of them each day. Don't talk abut the marriage breakup, talk about the last time you had fun together, your last trip away, all the positive things you can think of. I know you are going through a very hard time and you are in my prayers. (((hugs))0 from Sue.

Missed you at chat Debbie, only four of us this week. I an see whay you were not able to fit it in. I remember those flat out weeks and how tired Ray would become and how uncooperative sometimes. I am glad Bruce has a nicer temperament. Thanks for the update, hope to see you next week in chat. Sue.

Asha, I am so pleased you have so much pleasure raising your son. He has come through his fifteen years remarkably well. Your husband is a good man, both in how he has enabled you to be who you are now and in raising a fine son. You have grown a great deal in your wisdom and have shared it for the benefit of many here. Sue.

Debbie, enjoy your time together, just working side-by-side on any small project is building memories that will last. It is what being a "partner" as opposed to a caregiver is all about. You are doing well getting Bruce's cooperation and increasing the exercises. In the end it will make life so much better for you both. Changing carers is a challenge so maybe compromise? Sue.

Fred, you have had so much life experience, I am glad you are able to use some of it in helping these young men and women. Well done! The puppy, well that is another experience to add to your many others. I am sure you will find it another talking point wherever you go and there is another animal lover to talk to. Sue.

This week has been an odd kind of week. I have had a few social activities and that has been good. I went to the Lions dinner and that was a pleasant evening. I am looking to doing a little more volunteering with them as soon as life settles down. I am still a little tentative with what I do there, it is strange being a "single" rather than Ray's caregiver, I guess I will get used to that eventually. I went to the Apex40 dinner on Thursday and that was good too. I feel more at home there as there are several widows coming alone and I know one day I will be one of them too. Last Monday I had a delightful dinner out with some old friends and went back to their house and we watched a movie "Holy Man" with Eddie Murphy, very funny and something to think about. The craft group was also another outing so not so much time spent alone this week. If I can get a routine going, places to go, things to do I know I will feel happier about the direction my life is taking. The bedroom change finally took place this weekend. It is odd as the middle room is now set up with the two single beds and I suddenly realised I had set it up just like I did for the boys when they were 12 and 15, sort of sent shivers up my spine when I realised what I had done. I need to think of it as the grandkids bedroom now and maybe change the curtains, put bright pictures on the wall etc. It is still scary to think that sometimes life seems to go backwards instead of forwards though. I know I need to make some changes in my life but what direction the changes need to be in I do not know. I don't seem to have a lot of ideas about what I want to do,as I have said before going back to where I was before I became a caregiver is not an option. Back then I was doing two jobs and looking after the house and helping out my very aged parents. Now I am living in the house by myself and while Mum is still alive supervising her care as well as spending so much time with Ray. It really doesn't leave much spare time by the time i have done housework etc. Ray has been in care going on for six months now and my life still consists of me going to see him most days over the lunch hour to make sure he eats. There is not a lot else I can do for him apart from keeping him company for a while . His attention span seems to be shrinking and even the reading does not hold his attention for long. As his cognition fades it is less likely he will respond to what I say, more likely he will spend a lot of the time I am with him being locked away somewhere where I can't seem to reach him. I guess the combination of the seizures and the medication to stop them is making this happen now. It is again like losing him by inches. After being in a semi conscious state most of last Saturday with another series of seizures Ray spent all day Sunday in bed but was up and in his wheelchair by Monday and it has been a fairly uneventful week healthwise. He hasn't had a lot of bright and alert time and I have had to help him with his midday meal most days, seems he gets half way through and seems to lose the energy to go on putting food in his mouth now. As far as I have been told he has not had any more seizures. It is still very hard when I notice a downturn in his responsiveness. On Friday we had a rare treat, a visit from the older of his two sisters and his brother-in-law. I do keep them up with the latest news so it didn't come as a shock for them to see him inattentive and drooling. They stayed about an hour and said: "see you soon" when they went but I doubt they will. They live in Queensland and with kids, grandkids and an active retirement have a fairly busy lifestyle. Judy and Val, Ray's two sisters were my bridesmaids but over the years we have not seen a lot of them. They have mostly lived their own lives, each married and raised a family and we've maybe heard from them a couple of times a year. Not a close family really. Well meaning friends ask what I am doing for myself now. I tell them my week has mostly been spent with Ray and Mum. Some of them don't want to hear that. I don't think they understand it is hard to rebuild your life after twelve years as a caregiver and no, it is not time yet to "move on"..

Ouch! Not as good as the last medication is not good at all. I hope the doctors have a rethink and come up with a better answer. I clearly remember our older son getting so tired of waiting for his sixth birthday party that like Cayden just after they got there he wanted them to go home! I guess just one tired and overexcited little boy. You are doing the best you can for him and that counts. I pray you have the strength to continue for as long as he needs your help. Sue.

Just thinking that a lot of issues I am going through are similar to others who are newly "separated". It is illness that has separated Ray and I in our case but I don't think the reason matters, the resulting loneliness and change of roles is still a factor. Today I decided to change the bedrooms around. I remember the angst I went through when we got rid of the double bed bought by my MIL when we got married and changed to two single beds pushed together. Now they are going into the middle bedroom to be used by the grandchildren when they stay over and the double bed from the front room is going to be my bed. What affect that will have on my sleeplessness I don't know but I am hoping that if I make some changes in my physical surroundings that will settle the "separation anxiety" I am feeling. Looking at Ray in the daytime, when we are sitting in one of the lounge rooms or the courtyard I often feel that of course I could take him home. At the nursing home he sits there in his wheelchair, nicely dressed, clean and tidy, slightly smiling, looking around and he looks so normal. Of course I do know all the work that has taken place by several people to achieve that look, getting him out of bed using the Standaide, the showering and the dressing, involving several people are no small task, by myself that alone would take hours. At night I can imagine him in his armchair sitting next to me so strongly some nights that I turn to make some remark to him and of course he is not there. That is often when I fall apart, the emotion so strong coupled with that belief that my husband of 43 years should of course be sitting there by my side. Except that of course his many disabilities have made that impossible. I also visited Mum this morning and she was fairly alert for a change. She was still being showered when I arrived so I was asked to wait in a little alcove with some easy chairs and magazines in, much like a small waiting room anywhere. The aides did wheel her out to me when they had finished so we went into one of the big airy rooms and enjoyed watching a relaxation video featuring swans etc on a small lake with a nice music track playing. I found it soothing so I hope Mum did too. In the end she fell asleep and I went on to visit Ray. I went to the Carer's support group at Mum's NH last Wednesday after I did chat here. The group has changed, a few members dropping out after their loved ones have died and new people appearing to take their place. One dear lady looked on the edge of tears for the whole hour but was unable to articulate any of what she was feeling. I hope she comes back month by month until she trusts us enough to share what she is going through. We all know it really helps to share the problems and the pain and seek out others who really understand what we are going through. Today I had afternoon tea with an old friend, she has her Dad in care and as his POA etc she is now immersed in all the responsibilities of looking after her father's finances and looking after his day-to-day needs other than what the nursing staff etc does for him. She said even buying his toiletries is an embarrassment for her as he was always until some months ago very independent and a very private person. Now she needs also to buy his underwear, operate his bank account, know the dentist, doctor and specialist appointments etc. She is willing to do it, just never thought she would have to. Once again I am questioning my friendships as few people have contacted me to ask after Ray, to inquire what I am doing to fill in my time or ring regularly to make pleasant conversation to fill in my time. A few good friends have stayed by me and others have sent me emails and kept in touch that way. It would be easier if I had a few cousins etc to rally around to help me through this but of course apart from my sister who I see every couple of months there is no-one, one of the downsides of being part of an immigrant family. Ray's family rarely contact now. I am still feeling a little lost without seeing Trevor's family every day. Since he moved close by, two blocks over, to help me with lifting Ray before he went to the hospital and then the nursing home I became used to seeing them all regularly. And then they moved in here for two months of that 18 month period. I had became so used to having their little family close by. Now they seem settled in into another life and I really miss them, even Charlie the cat. I especially miss the company of Edie and Lucas. Edie and I often had a discussion over coffee after Lucas had gone to school. As she worked afternoon shift she had more time in the mornings. And Lucas was a constant source of noise, funny that even things that grate on you can be badly missed once they are at a distance!. I know it seems as if I am "stuck" at times in some sort of unreal holding pattern. I would have thought it was time I got over the separation and settled down to living a self-directed life. Not self-centered as I still have a lot of things to do for Ray and with Ray, but more self-directed than is presently the case. Maybe that will come in time.

I agree with you about the loneliness of being on your own. I have been married for 43 years and Ray and I did spend some time apart due to his various work commitments but weeks not months or years so I am finding life alone difficult too now he is in the nursing home. Like you I hope to develop new interests and friendships but like you I am going to take things very s-l-o-w-l-y. And of course I still spend three or four hours most days with Ray but the evenings are still hard to bear sometimes. Sue.

I stayed off the computer for a day due to thunderstorms so almost missed one of your blogs. Two days in a row -- wow. The intricacies of changing from one tv to another are enough for me as I tend to be technologically challenged so feel some empathy with Bruce trying to relearn it all. Glad you are back in the cyberworld. Sue.

Keep praying Fred, the Good Book says: "The prayers of a good man availeth much". I remember that from my Sundays School days, an education not wasted on me. Sue.

Lydia, I guess like stroke recovery, recovering from the break-up will be slow and require you to take baby steps, slowly altering your life and your routine to suit the new situation. I hope something good comes out of all of this. Sue.

Julie, I missed a lot of that, now I have the "freedom" but I'd rather have Ray at home with me. Sue.

Fred I guess "man's inhumanity to man" is with us down the ages. I am horrified at the treatment of native peoples here in Australia too. It is said that it is the victors who write the history books, but that leaves out so much that is factual and important in the history of any country. All we can do is keep our own relationships open and honest and pass that on to our own children. Sue.

Lynn, there is always something to challenge us in the stroke journey. You have a busy life made busier by being the caregiver to your husband and the nurturer to your family. I'm glad you are having a fun day on Sunday, that will help. In taking care of others remember to take care of you too. Sue.

Ray is back in his nursing home again. He didn't get out of bed today as the head nurse wanted the physio to sign off on his suitability to be back in his wheelchair self-propelling again. As the conclusion at the end of his hospital stay was that he had had a bad seizure, or maybe a series of seizures he should not have to be signed off, after all there shouldn't be any significant changes to his cognition as there would be had he had a stroke - should there? I found the days long in the hospital as I sat beside his bed for five or six hours each day. I like to be there to act as his interpreter. Ray cannot answer questions easily, it may take him two or three minutes to answer a simple question, if it involves thinking back more than a few hours he is not able to answer it at all. So it is easier if I am there to be his memory aid. I am glad Ray is back at the nursing home but will be sad if this latest event has taken more away from him. For instance if he is not able to go in the wheelchair, or if he is not considered suitable to eat in the dining room now. It is small things like that that add to his life, being able to be where people are, where the acivities are going on, being able to join in. I put myself in his shoes and that ability to go on with some sort of life is what I would want for me. A lot of people have asked me if I am getting used to being alone now Ray is in a nursing home. You call that a SNF and it is officially an Aged Care Facility here but you all know what I mean. The answer is "no" - I am not getting used to being alone. Just as Ray, like everyone who goes into full-time care, wants to "go home", I want and NEED him to be here. However I do know that the Ray I would want home is not the Ray that is in a nursing home needing three people to get him showered and changed but the Ray from some years ago who could walk, converse, laugh at a joke, and generally enjoy life.I put him into the NH because of all the changes and difficulty of one person handling him and that will not change with time. I know we all to some extent live in denial. I too have thought "this will never happen to us". I am posting this in the hope that some of you will look ahead and see that some day you may be in the same position I am in and in some ways prepare for it and others may see how fortunate they are not to be in the same position as yet and be thankful for the companionship they can still enjoy with their partner/loved one. I guess as the time stretches out I will get used to the routine of going to the nursing home and back, fitting in life around the visits to Ray. I know that he will eventually settle down and remember little from the many years he lived here with me. I try not to be sad about that. I know in order to keep friends now I need to alter my lifestyle. For so many years it has been "Ray and his carer/wife Sue". Now it is just Sue here and Ray in a nursing home so I need to learn to relate in a different way. Maybe I need to change my mindset and find some new things to do or return to old hobbies I dropped because I took up Ray's care. It scares me sometimes that this living without my husband of 43 years is the way it is going to be for a long time into the future. I guess it is this sense of "aloneness" that makes it so difficult to accept. Here on my piece of the lovely Central Cost we have a lot of nursing home complexes, in some cases accompanied by self-care and hostel type residentials. There are a lot of people like me still living in a home once full of family and friends and buzzing with life. I am not unique, just new to being one of this vast number of mostly separated women facing changes in their lives. Does this thought scare me? Not really, just reminds me that life evolves and somehow we all have to live with that. So Ray is back in the nursing home and the visiting there will hopefully become routine for me. It will be do some chores, visit Ray, come home and have some late lunch, do some chores, dinner and whatever the evening brings. I guess it can be a good life. As long as I can ensure it is not a sad and lonely one I should be okay.

Wow! Your son sounds like a great guy and a great example of that "never give up" attitude that is such a positive in recovery. Thanks for updating us, it is great when a positive, uplifting blog is posted, It reminds us all that recovery is an option but it comes with a lot of hard work to achieve it. Sue.

Lynn, Ray worked from home but six days a week , often early and then late so I know that "left behind" feeling. However we worked at it and managed 43 years before we separated due to his illness. Try to pace yourself and remember that in the end it is your son who has to work all this out. Sue.

Lydia, just to say (((hugs))). Sue.

Debbie, although it seems like it is one step forward and two steps back sometimes you and Bruce seem to be mostly moving forward now. I am so glad to know he is finally making an effort for you and ensuring his own future independence at the same time. Hope to be in chat on Tuesday computer permitting. Sue.

Must be that time of the year! We had about a week of rain, it flooded my phone junction box and on Thursday night my phone line started a loud buzzing noise and my Internet went down. So no Internet - no phone. On Saturday morning I was sitting in a stroke support meeting when a receptionist approached bearing a phone and it was news from the nursing home - Ray had had another collapse, maybe a stroke and was on his way by ambulance to Wyong Hospital. Wow! was that a blow! So off I went to join him in the Accident and Emergency. Ray was semi conscious, unresponsive, seemed in a coma of some kind. The staff were hovering but didn't seem to be doing anything.eventually he got accessed and they decided he would stay in a general ward "for a few days" and told me to go home and catch some rest. Well, Sunday he was similar to what he had been like when I left him on Saturday evening, the staff said he had aroused briefly but his heart rate was erratic, his breathing and blood work indicated an infection so they had started him on an antibiotic. He looked as if his face was swollen and he was having difficulty swallowing so only a drip to rehydrate him, nil by mouth. He seemed oblivious to my presence but did rouse for a couple of minutes and answer "yes" and "no to a couple of questions the nurses asked him. I honestly thought this was the end. Ray lay mostly with his mouth open with somewhat laboured breathing and his heart monitor went off every few minutes. The staff showed much professionalism but once again we went through the "do not resuscitate" regulations. It seems each incident is treated separately and the protocols have to be restated. I looked at him and wondered if I should change my thoughts on peg feeding etc. On oxygen Ray looks a million dollars but looks can be deceiving. I knew this time he was really sick. Today (Monday) he was responding, answering questions in some fashion, not really intelligently but trying to come up with some kind of answer. He was throwing his covers off and seemed very restless. I know he just hates to have an oxygen mask on. He said his left leg was "sore" and when I tried to reposition him he seemed not to be able to straighten his left leg. I am wondering if this is a new "deficit" or whether it is just too much effort to straighten it in his present state and that will resolve later. The staff in the ward he is in are excellent. This time he is in a stroke assessment unit and they are treating him as if he has had an additional stroke. I have once again given them a timeline including all the previous strokes and as much of his medical history as I can remember. This time his doctor is a stroke specialist,who seems to know his stuff but hesitates to say he has had as stroke as it is not showing up on the CT scan. I would say he has had a stroke, all the indicators are there but once again not enough evidence. I asked the specialist what he was calling it and he said: "a lapse into unconsciousness of unknown origin"...I think that is a medical term meaning "I don't know". So when I came home today my phone was working again and here I am. I have answered some of the messages, mostly from the people who were at the stroke meeting that I ran out of on Saturday morning and tomorrow I will answer the rest. For the next few days I will spend as much time as possible by Ray's side to once again act as his interpreter and answer all the questions he no longer knows the answer to. The nurse who did the mini mental asked him where he was and he answered: "Ourimbah Railways station". I guess the long glassed in corridor he could see out of his window could have looked like a train and may be the machine noises he could hear reminded him of a train...hard to say. Tomorrow I hope to find him even better, more like the Ray of the last few weeks, maybe even able to sit up and take in some nourishing food. I am an optomist so I want him to go back to being able to propel himself around the nursing home, enjoy the concerts, go out on the bus, do all of the things he was doing last week. But also being a realist I am prepared to wait and see what the future does bring. I am just happy to have him still with me.