swilkinson

Fred, people have got to know what is made in America(or Australia) and what is not. No good making an icon out of a company that has ditched our country and gone overseas to make a bigger profit and pay less tax. If you are proud of your country you support it and others who are paying their way IMHO. Keep up with the way your country changes, worry about what seems to be changing for the worst but also emphasise the good things that are still there. It is a sad time all around the world with so many changes and some values getting lost along the way. I find be honest and open with our kids and they will accord you some respect. Some don't of course due to their own upbringing. I look out for our local youth and try to give them some respect and keep them in my prayers. Without them our future has no meaning. Sue.

Ruth, another blog..hey ho two in a row! You and William do well, I like your common sense approach. It is good you can see the significance of the small things like William now being able to make his own choices. That means you are able to back away from that and let it happen. Your pastor is right, not only is the western world greying but as the congregational average age goes up we are able to provide less and less services. Our church has a few nice ladies who do a pastoral phone calls and hospital and nursing home visits but no longer people who grannysit or provide meals or any practical help. I as one of them am now occupied with my own personal caring role. She is maybe wrong about the tsunami hitting making a difference, the best crisis management is preparedness so we better educate the young to help the old now or many will not see the need to help or have the necessary skills to do so. Sue.

Getting some instructions on how to safely get up is fine. Laying there and waiting for help is better if you have a lot of pain though. Sorry this happened to you Kimmie, even with me right by his side Ray can fall into space. It is one thing I am not looking forward to when he gets home as I know he will be even more tippy on his feet. Black eyes are no fun but easier mended than broken hips. Sue.

Julie, the new physiotherapist that gave Ray the exercises said to me: "You do exercises too, be strong for Ray". Okay, I admit it I have been slacking off. Sorry you had the fall, it is scary when you think of what the consequences of a caregiver getting hurt is in terms of who will look after her/him and the person they care for. (((hugs))) from Sue.

I decided to see Mum this morning before I visited Ray and I was so glad I did as she was in a delightful mood, all smiles and beating time to music. They have a radio in her shared room now and she was bopping away to the song "Wild,Wild West" half laying in her chair, her hands and feet beating in time. I so well remember her singing and dancing around her kitchen to a favorite song on the radio so it was like dipping into the past when she was young and happy and lively. The sun was out today and it is showing faint signs of spring so on another visit soon I might be able to take her out into the garden again. I do that every few visits if it isn’t too hot, too cold or blowing a gale. I am sure being out in the fresh air does her good. She always loved her garden so maybe the sight or smell of flowers is one she remembers too. Old memories don’t die with the brain cells, they just get harder to access. The visit to Ray went well too as he did do some of the chair exercises the new physiotherapist showed him yesterday with me cheering him on so that was a positive for a change. The downside is they have tonight transferred him back to the ward with only dementia patients where the attention goes to the more bothersome patients and quiet ones like Ray get little or no attention. At Lions tonight I paid both of our six monthly dues and put Ray down as on indefinite leave due to illness. I don’t know if and when he will go to dinners again. With the thickened fluids and specialized diet it is very difficult to go to a normal dinner. I know we did it for eight months three years ago but he didn’t have as many other problems then and certainly not the incontinence at the level it is now. I rang Ray’s sister tonight for her birthday, as she was 61 today. She was Ray’s favourite of his two sisters and he did actually mention some days ago that Jude’s birthday was soon though he couldn’t remember the day. She used to come and see him once a year, which is once more than the others. For someone like Ray I am not sure celebration days are important, for him as for Mum the days just flow one after another and I am not sure he remembers much about them. The combination of stroke damage and dementia has taken such a heavy toll. I went down to one of the local beaches today, didn’t walk on the sand but watched the waves roll in for a while. I actually went down to look at the progress of the new Surf Clubhouse as that is where Lions future meetings will be once it is opened at the end of October. The hold-up apparently is the road works, new driveways etc being held up by the wet weather. Since the old one was demolished our Club has been wandering from venue to venue. I like Lions dinners so hope that once Ray is back home I can still go. I am getting impatient now for Ray to be ready to come home again. I think it is because life seems to be on hold. I can’t make any plans, I can’t decide what to do about certain issues. I need to leave our money available for nursing home fees etc if Ray does have to go into one. Which means curtailed spending on other things. I do need a lot of new curtains, blinds etc for summer. It is easy to neglect maintaining your home when you have far weightier matters to think of – in our case Ray’s health issues. But of late I have made some changes while many more are waiting to be addressed. Trevor is cleaning out our garage, or attempting to. Ray was a real bower bird (so am I come to that), which means we saved so much for a rainy day that now needs to be cleared out and thrown out or given away. It is a huge task and really we are just nibbling at the edges of the problem. I have one of our favourite couples coming for the weekend. John will bring a chainsaw and some of the saplings that have sprung up along our boundary will “get the chop”. He is a painter, gardener and handyman and incidentally Trev’s godfather also so he and Trev will have fun sorting through yet more of our “treasures” I’m sure. I do need to have a clean-up before they get here so better dedicate Thursday to that. It has been a better week this week so far. I hope the light at the end of the tunnel will soon be switched back on again.

Dean I sometimes think we are better off with less intelligence. The more we think , the more we have to worry about. I have seen a group of mentally challenged children have such FUN in a field full of weeds where they could see a carpet of flowers. Maybe while we want to live in our minds we miss out on actually living in our bodies. Keep up your research, your work benefits us all. Sue.

Debbie, I used to have a fridge magnet when I had teenagers. It had a picture of the Cheshire cat on it and the inscription "Grin and ignore it" so I am very good at that now. I had a day off today, no hospital visiting and a dinner out and "show" with friends tonight. The show was one of our local drama groups doing Neil Simon's play " The Last of the Red Hot Lovers" not really my thing but quite easy to watch with the occasional laugh. Yep remember the "pet being sick on the bed" thing. Put pet outside, remake bed, do laundry - switch off mind. No-one's fault, just another of life's less pleasant features. You and Bruce are doing well. Sue.

We are back in a holding pattern again. Ray is happy enough lying in bed in a surgical ward in our major hospital. He gets food and his bed changed and a little attention from the nurses. I don’t think he likes it as much as the little hospital locally as there is no-one wheeling him out into the courtyard to get some sun on his feet, no-one bringing him magazines to keep him amused. The little hospital is more in nursing home mode as most people are waiting to go on to the nursing home and where he is now is a proper hospital set up for acute care so there is a big difference. I feel such a failure at bringing Ray home. He was signed off as able to do the walking and the standing needed for a shower etc but only took a few steps here. I showered him by myself on Thursday a week ago using a shower chair and the high arm walker. I took him to the wedding on Saturday in the wheelchair and he was okay. The day after the wedding the staff said he was tired so he stayed in bed on Sunday. I learned to change him etc on Sunday afternoon. He was fine on Monday and seemed to be okay with coming home on Tuesday. But then on Tuesday here at home on the second transfer to the bathroom he slumped, bent at the knees and could not stand back up again – a mobility breakdown. I had him resting on my knees and managed to lower him to the ground, which saved him from falling. You can do that kind of thing once, not over and over. In the end I did call the ambulance, what else can you do? I wish I knew how he could build his strength and stamina back up. The therapy staffs at both hospitals only walk their patients once a day, in the morning while they are fresh. There is no way a wife can walk a patient because of the health and safety issues. So although I would like him walked more often there is no way that can be done. One of the ambulance officers said that for some long term patients hospital seems safe and when the patient leaves they have some anxiety and have another turn of some kind. Maybe that is what happened to Ray, he simply lost his confidence with being home. I am not sure how I can address that issue except that Trev said he will stay here for 24 hours next time and give Ray a kind of settling in period. I think two out of three of my children now think Ray should be in a care facility. It is their concern for me that makes them see life that way. I know I am so good at telling others to look after themselves and here I am saying that I would sacrifice everything for Ray to stay in his home a little longer. It is such a big emotional issue “putting your loved on into care”. The theory is good but the actual doing it is very hard. I had to put Mum into care to give Ray the attention he needed after stroke number four in 2001 and now I am facing putting him into care because he is too needy for one person to look after. It is such a hard thing to do. One thing I have been doing is looking at lifting aides as I thought maybe without having to walk to the bathroom etc I would be able to manage Ray at home. It is fairly exacting work though picking someone up and moving them through the house on a hoyer lifter or some such. I can use the wheelchair without a problem but he has to be able to stand for a few minutes. Unless he gets stronger I really can't do this any more so if he can't relearn to stand and to walk confidently I will have to find him a nursing home placement. How sad would that be. I know every day people are making that decision, it is just one I hoped I would never have to make. Of course Ray has been severely disabled for some time now. I guess I just fail to see him as he really is. Not surprising as we have been married for 43 years and to me he will always be the blue eyed boy who could waltz me round the floor effortlessly, smiling and talking in that smooth way. Now we are both passing from middle age into old age and neither of us spry or supple anymore. One of the physiotherapists told me I need to go home and think about looking after my own needs for a while. As I’ve been a caregiver for the past twelve years that is a hard call. Even if I decide I can bring Ray home for a while I know he will not be able to help a lot with his own care so I think our time together is limited. Hopefully we will still have some good times though. If I can get some reliable care into place it will look easier to handle.

Fred, we went through some heat when we lived in Narrandera, the heat beat down on the dry plains and the poor birds dropped dead from dehydration as they couldn't find water and shade. Every summer ends and winter comes again and we complain of the cold. In our hottest places in Australia people live underground where the temps are lower. Maybe you should build a second basement or tunnel into the garden? Here''s hoping you have a nice long cool fall to recover. Sue.

Lenny thank you for throwing out this challenge, nothing like a nice walk. When Ray comes home I will go for a walk pushing him in the wheelchair as I need to be fit too. Sue.

Dean, all of us have days when our wisdom turns to folly! My weakness is falling off ladders. That is without having a stroke, just a sort of gung ho attitude that defies my advancing years. Yep, in hindsight you should have waited for your friend and gone for a few easy rides first. Better safe and healthy than broken, bruised and battered. Sue.

Wow, life has certainly been a roller coaster ride for you. I can't say I have any helpful advice just to want to say I am amazed you got through all of this as well as you have. I am not sure how much thought you have given to your new life with your husband with vascular dementia but it would be good for you to find a site that offers support with that. I know dealing with Ray's vascular dementia how frustrating it can be to deal with someone who looks like the person they used to be but acts nothing like them. Welcome to our blog community, I hope you find the people here really supportive and find comfort from the comments and feedback you receive. And yes, get that degree finished! Sue.

MaryJo, you will have your hands full for a while as you and Dan settle into the new normal. Ray comes home tomorrow and I am bit anxious about that after only seven weeks apart. If you have new procedures to go through just make sure you rehearse them a couple of times this week. The nurses demonstrated the adult diapers for me yesterday as apparently Ray has to be changed a couple of times through the night. At least I know how to do it now. On the bright side it will be good for me to have Ray home. And I am sure you are looking forward to having Dan home too. Sue.

Leah, so sorry this is happening to you. It must be very difficult for you to face what has to be done each day. Yes, please call those who have said they will help, give them a list of your most urgent needs if they ask what they can do, and see what they are willing to do. I used to get the washing off the line for an old man up the road, his health worker put it on, I took it off. It was about ten minutes work twice a week. I also used to take his mail and newspapers up for him as he lived like we do on a very sloping block of land and he could totter down but not back up. You are constantly in our prayers. Sue.

Hi Dave, I am not sure what the "new normal" is for you but I think it takes about 12 months and you find out. At three months things are just starting to settle down and you are realising that this is not a nightmare it is in fact your "today" life. Ray has had 6 strokes 1990, 1999(x2), 2001, 2005, May 2011 so we have been through this a few times. Tomorrow I bring him home after a seven week stay in hospital and we start to find out what our new life together will be like. I admit to feeling nervous and anxious about it but new challenges are scary at first. Welcome to our blog community. I hope you blog often so we get to know you and that you find people here you can relate to. All support helps. Sue.

The wedding went well. The last people to get there were Ray and I as when I arrived to pick him up at the hospital he was still getting shaved. The bride’s limousine went round the block a couple of extra times and we were seated by the time she arrived. The whole day went well from then on. There had been a lot of things happening the week before and I think we barely got through it all. All weddings have glitches but luckily they all happened before the ceremony so that was fine. The bad storms predicted for the day never eventuated and although there is thunder now as Sunday draws to a close Saturday was fine and sunny with just a little light cloud. Shirley and family came late Friday afternoon and as Edie and Lucas had gone to her mother's we took Trevor out to dinner. It was a good move as he had been panicking all week and that day was no exception. Craig got alongside him in an understanding way and soon he was fine. It was a nice seafood buffet meal at one of our favourite restaurants so I ate my weight in seafood – I think I was a little tense too and having a night out helped to ease the tension for all of us. First stop for me on Saturday was the hairdressers and some of you have seen the fancy hairdo on Facebook. Nothing feels as great as a “new do” and finally getting into that nice outfit that fits and looks great on. A quick cup of coffee and then it was off to pick up Ray. The nurses had him ready (except for the shave) and we were off. Unfortunately the traffic was very uncooperative and while it had taken us 25 minutes to get to the rehearsal it took us 40 minutes to get to the wedding itself. There were about 80 people including lots of children at the wedding. Our daughter Shirley, who as a Salvation Army Captain is a minister of religion and therefore a licensed marriage celebrant, performed the ceremony. She was the first to cry and brought a chuckle to the congregation when she said: “You’d think I’d be used to this by now.” But it is not every day you get to marry a family member. Most people were impressed by the service and clapped in the right places. Afterwards we had photos taken in the courtyard and round various spots and we are getting a disc of them as a wedding thank you. In the meantime you can see a few at: http://www.facebook.com/media/set/?set=a.155946367816955.38005.109677512443841 as you can see Ray is in the wheelchair and looks good in the suit. The family lunch went well. With nine children present there were some tears and tantrums but Ray was able to eat an omelet and some ice-cream for dessert and I had brought thickened drinks with me so he was fine. Won’t go into the BM difficulties but all in all a very successful day out, his first day out of the hospital since 13th June. Today he was still in bed at 11am with no intention of getting out at all. He deserves a rest. I did remind him thought that that kind of thing does NOT happen once he is at home. The nurses and nurses aides have been great the past week or so. Every day someone has come along with some handy hints for when he comes home. One of the cleaners told me the best place to buy continence aids. I think once they realised I was definitely going to bring Ray home they were then willing to share what they thought I needed to know. It is a pity people leave it so long to do that. I could have done with that advice earlier on. Now Tuesday is the deadline for Ray coming home. I still have not finalized the arrangements for his care as I disputed the first lot of arrangements and I am hoping that all falls into place early next week. In the meantime I just pray that I have the strength to look after Ray in the way he needs and deserves

Kelli, value what you have. Yearning for what you no longer have is all very well but remember worry is like a rocking chair, takes a lot of energy and doesn't get you anywhere. I do feel for you, it must be very hard to have lost those memories. Can't say I fully understand how that works but want to send you (((HUGS))) anyway. Sue.

Wow, that is some update! So sorry to hear you have had another stroke - not good news at all. Ray had another one on 30th May and is yet not home with me but should come home on Tuesday all being well. I hope your attorney can speed things up for you, as you say future assets are fine, you just need to have food and a roof over your head for now. Sue.

Lenny, you are so lucky in the wife you chose - enjoy your break and hope the game is all you want it to be. Sue.

Fred, it has saddened us to see your country grappling with this latest debt problem. For countries as for families living within a restricted budget is not easy. I am always interested in health and well-being articles and am sure others are here so will appreciate the link. Sue.

Asha, while it applies to some a lot of people I have known in my life have been hard workers but maybe have not had the breaks they need. So I don't believe that it is just hard work that makes you a success. And what we think of as success may not be all there is to life. Or some of our greatest heroes would not be the "failures" some of their peers thought them but millionaires instead. Sue.

Julie, there are some procedures that turn out to be a nightmare, seems you have just been through one of them. I guess if the colonoscopy is important you will have to eventually reschedule. Maybe next time make plans for everything to be disposable to cut down on what you have to do. I think you could consult someone about how to cope with the dehydration during the process. As it is a common test this problem must have arisen before. Sue.

Sheryl, you made a lot of sense in your reply. I think you should copy it into a blog or a post as it made clear how cooperating can make life so much easier for the stroke survivor and the caregiver. Sue.

I had one of those strange days today where nothing went as planned. I had to try the suit I had for Ray to wear to the wedding on him and thought that would just take half an hour or so. I had other plans for the rest of the day. As soon as I took the suit jacket in I realized that it was not big enough for Ray. During his long hospital stay he has lost so much muscle and he now has a really round mid-section, adding about 10cms to his waist. He also has two frozen shoulders not one, as a result of one of the falls, so is unable to move his right arm in a full arc. He is also hunched over as he has been sitting bent over doing his puzzles. He seems to have forgotten how to sit up tall like a man usually does. The suit didn’t fit and I had nothing at home bigger so I had to buy a second hand suit from our church's Op Shop several sizes bigger than he used to wear. This one is broad enough across the shoulders and fits over his tummy. It will hang open a bit but I can’t fix that. It is nothing like I wanted for him but as he is sitting in a wheelchair I doubt anyone will realize that it is a compromise. Edie's sister came to the hospital and gave him a haircut. It is very modern (she mostly does kid’s haircuts) and he certainly looks different but tidier which is what was needed. While we were there Trev and I did some maneuvering around with him and Trev says he needs to go back to weight lifting as his Dad is much harder to lift now. I think we can work on that when Ray comes home as we will have more time with him than the therapists do. I missed my ladies lunch today but managed to get there two hours late just before everyone left so I did get to talk to some of them. I also missed my visit to Mum this morning so will try for that tomorrow. I find I am so tired and the less I do the more tired I get. It is dealing with the emotions of all this, the losses Ray and I have experienced through this last stroke and grieving once more for the life that has gone. I’ve had a couple of crying spells the past few days and some nightmares too. I am hoping that is just the strain of it all. The wedding plans are taking up a lot of all our times. I don’t have a lot to do with it but am a sounding board for Trevor who is getting overload from watching Edie being so focused on it. I admire her for what she is doing. Her Mum is not a well woman so the planning, ordering etc is all Edie’s to do. I just hope the weather is as good as it has been the past few days so they have a glorious morning for the service and are able to get a lot of lovely photos. I am grieving because I cannot do as much for them as I did for the other two. Trev and I need to get a move on cleaning up the shed up the back so we can store furniture in it. If he and Edie are to move in here we will be merging two households and that is not going to be easy. I am a confessed packrat so I have kept so many soppy sentimental things and all those bits and pieces that will come in handy …one day…and that is going to take some sorting through. I make an attempt at it some days but never seem to get far. Ray’s discharge has come back a day and is now next Monday (8th August). I hope the therapists’ work on his standing, getting in and out of bed etc as we see that as an area which could do with a lot more attention. I go on praying for the strength to take up the task once more. I have just posted a reply on a thread recommending that the writer break a mass of problems down into some she can list and thereby make the problems either manageable or solvable and that is what I am trying to do myself. I wish I had a partner I could work with as I did in the early days or our marriage but I don’t. I now have to use my own judgment and if things go wrong take responsibility for that. It is not easy to do. If love works miracles I should be due one any time now. Sue.

Sheryl, wonderful news , I am so pleased for you. :forgive_me?: You have persevered with your life post-stroke and I see you as one of the visionaries here, those people who look ahead and see there are bright patches where the sun still shines brightly. Sue.