swilkinson

Jeannie, sad news about your brother-in-law, living alone sometimes has that sad ending. My condolences to Carl. It is lovely to read your blog about gardening and acts of charity. You are living out a dream in a way, helping others, being a positive influence in your community. I really admire you for that. Sue.

Beth, my blog has been a dementia blog as well as a stroke blog since I first began it. Ray was diagnosed with vascular dementia not long after the 2005 stroke so we have been living with the effects of that for a long time. He has 48 and I was 43 when he first stroked, he is 68 now, so we have been travelling this road at a younger age than most. Now sadly the stroke/vascular dementia combination is merging so that what is causing a situation with a particular happening in his medical life can be attributed to either or both. This has complicated his recovery as the nursing staff use the vascular dementia as a reason for his failures. This gives them a "not our fault" escape clause which I hate. Thank you for the link to your new site. Sue.

So pleased you finally found the house you wanted. And right next to your daughter...hmmm...no fights now or she will hear and be right over. Sue.

This weekend was a turning point in a way. On Fathers Day Ray had a visit from three people, Trev, Lucas and myself. We all came in the one car. As a present we brought Ray a thick shake which he was able to drink with some minor coughing and that was our celebration. We bought Lucas a kids meal and he ate that while Ray ate his lunch so I guess you could say we had a meal together. No big backyard barbecue, no family gathering, no little ones running around or bringing gifts for "dear Pa". Trev, Edie, Lucas and I went to Hog's Breath cafe at night and celebrated Trev's first official Fathers Day. Shirley had been here Tuesday to Friday that week so I guess she thought that was enough and Steve and family didn't bother to get in touch at all, so I guess that branch of the family don't know how to cope or considers the relationship over now. How very sad if Ray is no longer considered Steve's Dad. This week the Aged Care Assessment Team (part of the Department of Health) will ring me with care homes they think are suitable to meet Ray's needs. Unless you are self-funding you don't look for your own nursing home. We will have a contributing amount to pay based on our income and assets as we are unable to pay the full amount needed. Until that is organised we pay a higher daily rate. Just as well we saved for a rainy day because those storm clouds are rolling in. We will also pay for his medications and in most nursing homes other extras such as haircuts and podiatry, clothing labels, pharmacy goods and a whole lot of other things we take for granted in our own home environment. I am not doing all this as stoically as I'd like. Mostly I can speak to people without crying but answer either flippantly or with tears when the serious subject of placement comes up. I don't want to do it but have to as even with Trev's help I cannot do around-the-clock two person assist care. It is the end of one journey and the beginning of another for Ray and I. I will no longer be the hands-on caregiver. I will still be a wife and life partner and carer, I will still be the good friend if that is all there is to be. I will just not have control of his care any more. It is hard for me as a caregiver of twelve years to do this. Twelve years ago, on 3rd September 1999 with fear and trembling and wondering how I would ever cope, I brought Ray back home from Woy Woy Rehabilitation Unit. He had had the two major strokes in Bendigo, one on 19th April, another on the 10th of May and had so many things happen to him arising from that that it took six weeks there and another three months at Woy Woy to recover enough to come home. Then he had in-home rehab, OT, PT and speech therapy for the next twelve months - a long recovery but a successful one. This time he has had 13 weeks in hospital and "slow rehab" and is really worse now than when he went in. I think this is because he has had maybe a slight heart attack as the man in the next bed a week after he went back into hospital on 9th August after the failed discharge talked about the fuss during the night when "they worked on him" so I would say that was either a seizure or a heart attack. No report to me about it so I'll never know. Tomorrow I need to look at two more nursing homes with a view to placing him for respite and later into permanent care if my first two choices of care homes do not become available. It is a long process and I doubt I will be over it for a while yet. Financially it will mean we will use our savings, Ray's retirement fund and possibly some of mine so that is hard too. But whatever will be will be. I am glad I have been frugal and had the money put by to do it. So mentally right now I am a mess. I never thought I would get to this point. I had hoped that Ray would be with me for the years ahead and one day, an old, old man, would succumb to death as we all do. It feels like failure, it feels like retribution, it feels like the death of a relationship. I know that is "over the top" but that is how it feels. And some of you, having been in this position or knowing you will one day be in this position know that too. I want to thank you all for your prayers. I know we all prayed that Ray would be able to come home here again but honestly I know now that that is not to be. I just want to find him somewhere safe to live out his days, somewhere I can feel safe visiting him and hopefully somewhere the family will visit him also. At the moment I am not really hopeful of that. Please continue to pray for us both, for courage and resolution for me and understanding of the situation for him and a good outcome for us both.

Babs, I don't think there is an easy way to go through all of the packing and moving. It is stressful enough when both of you are able to work on it together. To have to do it while Eddie is so uncomfortable about it all is an added stress for you. All I hope is that it is worth it in the end. Use other people who have said they are willing to help you. I have a 10% rule, once you open a box 10% has to go. Shirley cleaned out a few drawers while she was here and I think 90% went! She is much more ruthless than I am. Good luck with it all dear friend. (((hugs))) from Sue.

Fred, it is good to find a place to live "for the long haul". Like you I have lived other places and it is the Central Coast for me. I like your attitude to life, your wife, your relationship with others. Fred, there is something of the philosopher about you. I hope all goes well with these kinsmen of yours as yet another tropical storm harries them. Sue.

The past few weeks since Ray has been back in hospital have been awful. It seemed as if each day I got some new bad news. This is wrong with Ray, that is wrong with Ray, his behaviour is worse, he is having hypos through the night, he seized one of the nurses by the arm and wouldn't let her go. I can only take so much bad news in. In the end I wanted to say: "So deal with it!" Instead I took on the guilt of a mother with a child who is misbehaving at school. In the social worker's interview this week she remarked how much I had changed in the past six weeks. I guess the stress of it all has just ground me down. And that is why I knew that they are right and I will not be able to manage all of Ray's care needs now and he will have to go into full time care. The interview on Monday was the most shattering as the social worker who likes to "tell it like it is" was fairly brutal in her assessment of Ray's mental capacity now. I wouldn't say she exaggerated but she did describe the bad days as if that is all there ever is or will be. I was devastated and cried and cried. I was alone as I had not expected to have that particular interview right away, Ray only having got back there on the Friday. The past few days have been like walking though a fog. The road is familiar and you know if the fog would lift you would still see the landmarks but while the fog is there landmarks are invisible. Our daughter came up by train and arrived at 8.45pm on Tuesday night. I was so glad to see her as I thought it would take a lot of the strain off Trevor and Edie. She and Trevor sat in on the interview on Thursday morning and because they had been forewarned by what I had told them about the interview on Monday they did both have tears running down their cheeks but agreed that they did want me to survive this and placed care was our only choice. If they had decided the other way I would have gone along with that but I know the amount of support I would have needed was beyond reason. We then went together to look at a couple of nursing homes in the complex close to where I shop and behind where Mum is right now. The accommodation at one is like large rabbit hutches, each resident in a slice of a room with a shared bathroom, another had four beds in what is obviously a large room designed to take three beds. Another was okay, full of light, cheerful staff but the "extras" would take a lot of my money as well as Ray's to pay for, don't know how much I would have left to live on. Now we have to wait and see what I can work out from our financial point of view, what is available and then make the decision. Of course there will be pressure for me to get on and make the decision as the hospital needs to "free up" the bed. And it is my decision. I cannot get Ray into the nursing home where Mum is as that is a three phase system, self-care ->hostel care -> nursing home so they always have a long, long waiting list. One of the others will have to do. Will Ray's conditions improve? Some people do really well in assisted-living nursing homes. They love the fellowship, the fuss the staff make of them, the courtyard and the activities - whatever angst they have had they leave behind at home or in the hospital. Others grieve and pine and don't do well at all. Only time will tell what is to happen to Ray. As for me, I will grieve and hopefully one day come back to whatever is a "new normal" for ex-caregivers.

No courage does not overcome fear, but love walks alongside fear hand-in-hand. You and Jerry are always in our prayers. Sue.

Julie life after stroke seems to be one illness (or new condition) then another, I suppose because resistance is lowered and also because their body is on overload. One doctor told me it is like Ray is carrying all of his weight with only half of his strength. Keep up the good work, you seem to be leading Larry back to what would have been close to a normal life. Enjoy eating out, it has been one thing I have really enjoyed in this stage of our life. Sue.

Leah, our love and prayers you have. Ray and I have been going through some problems too with his health so I know facing reality is tough and it is easier to lose ourselves in reading, the computer etc. Please keep us updated as much as you can so we can pray for your immediate needs. Sue.

Jim'swife, welcome to Strokenet and to the blog community. We are happy to support you and look forward to getting to know you (and Jim) better. I have no idea what exactly you are facing. With every stroke, area of damage, life changes being different we are all facing the same emotions if not the same actual events. Anyway we are with you in our confusing, frustration and anger with the stroke(s) and what we have lost. Come to caregiver's chat if you can and we can support you in your struggle. Or keep on blogging and we will get a better picture of what you and Jim are facing. Sue.

Lynn, like you I always hate to see summer go. No snow here but those dark grey winter days always get to me. I like my days looong. Glad you enjoyed your family reunion, good to get together and reminisce. Making the trip home sounds sensible. Our cyclones like your hurricanes cross land and become tropical storms and rain depressions and you just have to sit that out and hope it doesn't flood. Hope you have a few more sunny happy weeks. Sue.

Lydi, it is good to reconnect with family. I have got a great enjoyment out of doing family tree research, all my parents brothers and sisters are gone now but I have cousins in England and Canada and distant cousins in the US also. Enjoy your new found sense of a wider, larger, more vibrant family. Sue.

debbie, hope you ride it out wel, I know with our warning system people often think it is overdone but better safe than sorry. With stockpiling food you are prepared for blackouts but I hope you have an axillary power source as it can be quite upsetting for survivors and caregivers if they are left without power in the dark hours of the night. I will be praying that everyone of my friends here comes through this okay. Sue.

Welcome to the blog community. By your posting I can see you have made some progress and have a great attitude and that will make life better for you. Keep telling us the story of your progress, it is an encouragement to others too. Sue.

Debbie, it is good to feel confident in your partner. I think you are doing that with Bruce again now. Congratulations on giving up smoking, Mum was addicted from aged 17 till aged 81 when she moved here. Then I didn't buy any cigarettes for her. I know - cruel woman. The pool work is doing wonders for Bruce, I can tell. It is a pity Ray gave it up when he did, I should have insisted on it but didn't - silly me. Keep up the good work. Sue.

Thanks lenny, Ray has used a ball and a beanbag but not a roller so when he comes home I will get some different textured balls and a small rolling pin as I am sure that will do. I appreciate new ideas as that means I have some new things fro Ray to try. Sue.

I keep saying this idea of bringing Ray back home is do-able but now not so do-able as I'd hoped. I just went into Gosford Hospital for what was supposed to be an evaluation interview. Only the doctor turned up to it in the social workers office. I took Edie with me as my back-up as Trev has a really nasty dose of flu so we told him "bedrest and warm drinks" and left him at home. The doctor was a young Asian woman and really explained Ray's conditions well. Unfortunately he now has two new diagnoses pertaining to the heart, Atrial Fibrillation and Atrial Flutter and he is on warfarin for that. He also has hypos at night so his diabetes is now considered unstable. He still needs two person assist for walking and is now getting weaker rather than stronger. I wanted to ask if there was any good news. Apart from that the plan is still to bring him home, he can die here cheaper than at hospital. But with all of this he still has his pink cheeks and his blue eyes and looks well... The social worker is really trying to get a plan into place for me. She said when he is transferred back to XXX hospital for his continued slow stream rehab she will send a set plan with him and they will have to stick to that. Excuse me being cynical but she does expect a lot...sweet little thing that she is, fresh out of her training and so sure of her view of the world. She must have caught my look because she said; "I know all this sounds a little Pollyanna...". Isn't it a shame we can't get all the help we so desperately need? Edie asked a couple of sensible questions, she will report all she heard back to Trevor so he is in the loop too. We went back and sat next to Ray in the hope that the OT would meet up with us there but she didn't show up. They are understaffed and I guess she might have been covering for someone else. Ray was obviously sat down in his chair to wait for us and was busy falling asleep. I prodded and poked him to keep him awake. Eddie laughed when I laid my hand on his arm and he jumped. He looked very tired. I did re-iterate what we had been told in simple terms but assured him he would be coming home again. I think in the end that is our only plan. I have also been told there will be a falls prevention program for us as well. This should include some instructions on lifting, maybe the suggestion I hire a lifter and some ideas on how to use the furniture to get him up. I did one years ago but a refresher would be welcome. In the interview we also touched on getting the diabetic educator back in the picture and some more in-home physiotherapy. Of course the staff in the other hospital will have to sign off on that too.At this stage I will take any help I can get, this is the only way I will manage. The saying :"many hands make light work" comes to mind.

I am glad Garion got the treatment he needed. It is certainly traumatic for all of you. I hope he makes a good recovery. Lydi, as a Mum I really feel for you. Their pain is our pain. It has not been a good few months for you and I hope things get decidedly better soon. (((hugs))) from Sue.

I know that feeling of sadness when people go before their time. My condolences on the death of your cousin too. I echo Kathy's thoughts - may you and your family find peace with this. It will be so hard for his bride, his parents and siblings. Your uncle was young also and you will miss him as well. So much bad news, enough to mar your enjoyment of your vacation. (((hugs))) from Sue.

Julie, you do have a lot of common sense. I so agree with your asking Larry's daughter to ring and spend just five minutes if that is all the time she has. He would soon get used to that more regular call. If I give the phone to Ray he only has about three questions he asks so then hands the phone over to me again. The dinner out sounds good, I choose Ray's dinner based on what I know about his eating habits and also on his ability to chew and swallow so an omelet with gravy or something that looks like mince and mashed potato. he is happy to be out with someone different and usually responds well. Enjoy your friends and family and the few outings you have. Life is too short not to party! Sue.

In our lives we talk to many people. Some responses are very trivial, like exchanging words with strangers, some are very deep and meaningful like sharing with a loved one the thoughts from the deep recesses of our heart. It is a sharing that is precious, meaningful and RARE. Part of the problem with our modern life is that we now share with everyone some of the deep meaningful messages when we should instead be sharing the words of exchange. I am thinking of Facebook here of course. I put up my status, "Ray is still in hospital, no progress for a week". All the people on my friend list see it. Then some comment and all the people on their friend list see it. The ones who are curious then click on my name to see who Sue is and who Ray is. That means a lot of strangers are reading about me. Recently I was aware that this is happening with my Strokenet connections too. A cousin emailed me about a blog I had written. She had put information I had given her together, figured out I was "hostsue" on Strokenet and found my blog. Okay it is public as I want people to benefit from it, so it is not an invasion of privacy or anything like that. I was just surprised and aware once more that we have a lot of witnesses to our lives that we are not aware of, more so since the coming of Facebook and Twitter. So we have to factor that into our communications. I have had some problems with the hospital staff. I had a loud difference of opinion (okay, argument) with the social worker at the smaller hospital Ray was in before this readmission. Some of the argument has been passed down from various witnesses, mainly nurses and therapists, to the present ones. This is leading to a lot of conflicting information circulating. For instance one of the social workers said: "I believe you said Ray will never go to XXX hospital again?" No, I did not say that. One of the participants in the arguments did say she hoped she would never see us back again, but the social worker would have to go back to her and ask what she meant by that remark. Words have the same impact as stones thrown into a pond, you throw a stone, you get the impact point plus ripples. So now I am experiencing the ripples of a past argument and no doubt being judged on that basis. I am no longer that nice carer I am something of a "dragon lady" now. This in turn will impact on the decisions made about Ray and on his behalf. That was something I certainly didn't think of at the time when I was loudly voicing my opinion. As you can see on the previous blogs this hospitalization has really impacted on me. I think the continuing strokes challenge my trust in myself as a caregiver and my trust in the medical profession as a whole. It certainly has challenged my concept of the hospital as a place that provides appropriate care. Maybe my past encounters with the system were the exception not the rule as I thought he had excellent care and the concern was on him getting better, getting stronger and getting home. He was always stable before he was sent home and I had no hesitation in taking him back home. In these times of unpleasant economic realities underspending is encouraged because of budget restrictions due to world recession etc etc. This time there doesn't seem to be an emphasis on care and rehabilitation for someone like Ray but care, comfort and early discharge, either into a facility or back home again. This is a problem as quick and easy solution Ray is not. And slow rehab, which is what he needs, is too costly. So chances are he will be discharged early again, an economic necessity. I am hoping I am up to that challenge. I need always now to be mindful that unseen witnesses are recording some of what I do. Without being self-focused and paranoid we all need to be aware of this. I remember in my girlhood an old ,old friend showed me a sampler she has made as a girl in Victorian times. It said: "Be careful of the words you say. Make sure they're soft and sweet. You never know from day to day, Which words you'll have to eat." Author unknown.

MC, Ray has had so many falls and some of them I have been able to help him up, some we have called Trev to help with and some the paramedics. It is hard to know when to call the paramedics but I usually do so if I think he is hurt. I have had two falls so far this year. I now see it as age related, I am 64, and haste related, I am always dashing off to do something and so I trip over. I guess awareness is the key here. I am very glad you were not hurt. Keep safe and when you have a fall assess the damage and get up with help if you can. Sue.

Fred, it is amazing how much paperwork there is involved with death. But someone has to do it and it is one last thing you can do for those you love. Enjoy the trips, the opportunity to sit in the car, look at the scenery, share a conversation, just be together. Sue.

Ruth, it is clear you can't bring Dick home but why is moving him to another home not an option? Surely there is better care somewhere close by? Is it financial or is every other nursing home worse than the one he is in? I was so glad to read you took your Dad back to his old stomping ground. What a special gift you gave him! Hopefully one that will give him good memories in years to come. And you are right, small towns are more supportive, friendly and do have that "down home" feel you miss in larger cities. I hope you can plan some more excursions with Dick before summer ends. I think that is part of the solution for you both, knowing through the bad times that you have something to look forward to. Sue.