swilkinson

Welcome to a great community of bloggers. We are all here to help each other and there is so much wisdom and support here. You sound as if you have a lot of good things happening, funny that gratitude tends to release good things into our lives. Yes, it is nice to reach 60 and maybe 70 also, Ray will be 70 this year, I have to wait a few years to see. Look forward to learning more about you and your journey as you blog more about your life. Sue.

Wayne, you have a good attitude. With good eating patterns, the right amount of exercise and the attitude you already have you will get there. You need to make a conscious effort to keep well, it doesn't come easy. Sue.

Thanks for updating Dave. Life is starting to go well for you, the progress is good but the confidence you are showing now is even better. Sue.

Katrina, you are making a difference in the world, working, driving, educating others about strokes. I am so pleased for you that you managed the first week so well, it can only get better. Sue.

Debbie, add my prayers too, you have the way of making life balance out and much to teach other survivors and their partners about stroke. Apply what you know to help these good people to cope. Please look after yourself too. You cannot make the whole world right so just do what you can. (Great advice coming from me huh?). (((hugs))) from Sue.

Leese. whatever helps - do it! Sue.

A big welcome hollydoll to a great little community. Yes, there is a guy in the same facility of my husband who is a joy to be around, always laughing and happy and yet he lost his family prior to the stroke so i guess he has changed in the same way you have. I hope your progress continues and you find a new normal that is a happy place to be. Sue.

Listen to Debbie, she talks sense. Like you I have played with the idea of bringing Ray home - BUT I know the dementia would defeat me. I can talk to Ray now and his blank expression tells me he does not understand what I am saying and his turning his head away tells me he can't hold his attention for long and I would be constantly fighting that as well. That sudden change from Mister Nice-Guy to Mr Nasty that undermines what you are trying to do for him also devalues all you have done in the past. It happens to me too.There is truly no future together now, only those few hours we spend together when Ray is in a good mood are worth remembering. The rest it is better to forget. Like you I am now having to look at life alone. Like you I have a lot of cleaning out and sorting to do. Like you I look at the finances and wonder if it is a good time to sell now or if I need to do what I can to keep up with repairs etc. No easy answers here. I am in better health than you are Ruth and still know that I simply don't have the energy to tackle all the problems as it is without adding more. Sue.

Did you miss me? I missed you all. Especially those who meet in Tuesday night's Caregiver Chat and all my friends in Blog World. I am just back from my little getaway. For most of it I was a long way from where I thought I would be, on a rural property on the Southern Highlands, not on a busy road running alongside Lake Illawara. It all turned out much different from what I had planned. I thought I was going down to mind the grandchildren for the last week of the school holidays to let their parents get on with their work of community welfare in the Salvation Army. I went down on the train on the 20th and was prepared to settle in. Not so. I was told:"Mummy and Daddy are still on holidays so we are taking you away with us". So off we went to a small property in the Snowy Mountains in the south of New South Wales, a dot on the map called Dry Plains. It is above 1700 feet above sea level so it is much colder than here, cold for summer, cold at night and at one stage only 11c (18f) degrees and that was the highest it got on that day! Just as well I had taken jeans and my daughter found me an old sweatshirt and I managed to stop shivering. You can guess the swimsuit didn't get wet! I had a lovely relaxing time and so did my daughter as I made her an honorary member of my January reading club and we spent whatever time we were at leisure reading on her back verandah (yes, she has one too on the back of the little two bedroom cottage). The grandkids (bless them) were co-operative so if Mum and Granma had to have a sit down for a while they also found something quiet to do. We read the Readers Digest condensed books, good , bad and "what is this???" and enjoyed each in it's own way. Yes, I did worry about Ray, about Mum and about Trevor and Edie and Lucas moving from here to their new rental home two suburbs over but for once I did not let any of that disturb my peace. I have got to have a break sometimes, I have had a hard twelve years and now I need to let go of some of the anxiety and try to rebuild my own confidence in life in order to keep strong for Ray. Ray and Mum both have others to take care of them now and I need to trust that those others will be competent and able to deal with day-today caring for them. And if anything does go wrong they have the boys' phone numbers. We had a good joke about the weather. Craig has a barometer in the window over the sink so when he was washing up he would call out: "I thought you said it was cold, look it's 21 degrees, 22, 23, 24... look it's 30 (84f)...we ought to go swimming!" Even though we knew it was the steam warming the barometer we still laughed every time he said it. It was great to be in a place where the night is black as pitch, the only sounds during the day the infrequent vehicles travelling into town on the dirt road, the only night noises being the "baaaa" of faraway sheep and the occasional night bird. The land has a very small house on it so I shared the 2nd bedroom with my grandchildren and okay, Granma snores so they would throw stuffed toys at me to try and make me stop. A lot of giggling each night until "Mum" told us all to "pipe down and go to sleep!" We had BBQs and day trips out, often stopping for morning tea or lunch somewhere nice. We had walks along Lake Eucumbene and we explored the little villages close by. We had plenty to do and see and of course plenty of good fresh country air so we all slept well at night. We did some walking locally too and I found a nice patch of everlasting daisies that Shirley can dry and put into a vase. We saw kangaroos at dusk and saw plenty of birds and sheep of course as it is high country pastures all around. I must admit I can feel myself slowing down now and found it hard keeping up with the little ones. Christopher is 12 now and taller than me with a long stride so he takes some keeping up with. Naomi at aged seven is still clingy so loves to walk hand in hand. It was great to be able to spend some time with them. I have been sad for over a year now and sometimes close to depression so I need to work on that now and make myself mentally stronger. I will always have worry about Mum and Ray I know but I need to handle it better. I love them both but it is counter-productive to make myself sick with the worry. I need to be more logical and less emotional in what I do. I had a lot of thinking to do and the peace and quiet of the country allowed me to do that. I have really valued the prayers of so many people, including my friends on here. Each time I visit the Salvation Army Corps Shirley and Craig are in charge of, people come up and tell me they are praying for Ray and for me, we are Captain Shirley's parents and important to them. It is that and many other kindnesses that keep me going on.

Debbie, I missed the 60th birthday party, just wasn't in the mood, instead I did the 40th anniversary party a year later with the boys helping. I am so glad e 0th, thatI did it with Ray sharing the limelight. I have the photos in the ruby anniversary frames and that is good. I understand what you said about the 50th birthday, that seemed more important to me too. This year in June I will be 65. I marvel at the way you do such a good job with Bruce and work too. You are very organized. I have never been that way. When I was caring for Ray I just put one foot in front of the other and somehow got everything done. Now I feel as if I am creating life out of chaos most of the time. Sue.

I'm never ready until I step out of the door but my time away will be a blessing I am sure. It gives life perspective when you step away from it for a while.

No chat today so this is a blog to add comments to about what you are facing today. Remember it is a public blog so others can see it. I am sorry that this is happening right now as I know it is frustrating not to be able to meet up with your friends in this way. My today is a hot one and I have a lot of clothes flapping on the clothesline. Edie has been having a lot of trouble with blood pressure during this pregnancy so she is at Prenatal Clinic today and then goes to work, Trev is at work and Lucas is at Vacation Care. I guess setting up house again on their own will be a big learning curve as they have had a fair amount of help with cooking, tidying, babysitting etc from me since they have been here. Still they are young and have a lot of energy they need to harness. And I will get the house set up again when I get back from my stay with my daughter and family. (I am an older lady and set in my ways...lol). At Lions last night I learned that a few people have visited Ray in the nursing home but because he doesn't remember I would never had known if they hadn't told me. It is like he is living his life in secret. I feel shut out but am trying to come to terms with that. The break away may help. After lunch this afternoon I will tidy things as much as I can. I will visit Mum and Ray tomorrow so I have current news for the family down south. I will miss them all while I am away but I need the break and to see the grandchildren too. I realised that I have been concentrating still on the problems here and do need to step away and look at the bigger picture. Pray for some fine weather for me and travelling mercies. Sue.

Just sitting here imagining you all rugged up like a beaver! Enjoy your new found freedom George, You have my admiration for all you seek to do and how you conquer the challenges. Sue.

Fred, you will carry those good memories with you and that counts for a lot. I will be thinking of you and praying that your strength and faith will carry you through this trying time and you will be a blessing to others. (((hugs))) from Sue.

Asha i believe this is just another acceptance issue. I know sometimes I try to minimalize the impact by not looking at what is happening. This means I finally have to face up to the realities of life and this is just another one of those occasions. Sue.

Tonight was the first Lions dinner of 2012. It is usual to pay your fees at the second dinner in January so members were lining up to pay. Suddenly I realized I have to either pay for another six months for Ray or write a letter of resignation on his behalf. How very sad, another thing that the combination of strokes and dementia has taken away from him. After 28 years of being a member, and a very active one at that prior to the 1999 stroke, there will be little chance of him even getting back for a special dinner. I go away for a week on Friday, down to visit my daughter and her family. Trev, Edie and Lucas will be packing up while I am away to move to a rental house two suburbs away. They wanted to move now so they can set up a room for the baby. My house is a three bedroom but of course I am in one of them. I think I was foolish to believe we could all manage here. Three generations living happily in one house can only be done with a lot of cooperation. While some can do it, we found we could not live comfortably together in such a small space. Maybe now is the right time for them to make the move while Edie has some energy. She has some health issues which might mean bed rest later in her pregnancy. I feel sorry for Trevor having to repack for another move, they have a lot already packed and stored up the back, in our old cabin, so it won't be as bad as when they moved the last two times. They have been mostly using my stuff while they have been here. They are hoping the next move will be to a house of their own. Because Ray does not recall having visitors it is easy for me to assume he doesn't have any. I found out tonight two lots of Lions have visited him since Christmas. A member of our WAGS group also visited him last week. So he does have visitors, just no recollection of them. One of the men tonight said they had "quite a yarn" and Ray seemed "quite bright". They must have had better luck than Trevor had when he tried to visit Ray yesterday afternoon and found him asleep and impossible to wake up. Sounded like some of the visits I have to see my Mum. Ray's personality is slowly changing now, I guess it is partly that he is in care and not moving around in the community as he used to. This means there are not a lot of changes and his life is very much more routine. This also means not as much interchanging of ideas, dealing with people, struggling with problem solving etc. Most of the nursing home staff are kind but busy so conversations are short and not really meaningful. I read to Ray as I think that will help to stimulate his imagination but I think it is inevitable that at some stage he will stop talking as he doesn't have a lot of conversations now apart from those I initiate.We do join in with a group of people in the courtyard outside his room under the pergola. This is good for me as it is like a mini caregivers' support group but it is not like family contact, Ray needs that too. I need to encourage our children to take the grandchildren to see him as much as they are able to. I fear he will start to forget them now. His short time memory is bad and his medium to long term memory is too. He is forgetting the past and is unable to contemplate the future. I realise my life is changing more and more and soon it will bear little resemblance to the life I had as a full-time caregiver. I am just realising I will never again have contact with some of the carers who used to come here on a regular basis. In a way it is like losing friends all over again as for a time they were our friends, closer than friends who rarely visited as some of them came twice a week for a while. For the past six months or so I was too busy supervising Ray's care in the nursing home to take time out to look at my life and see what it was evolving into,now I really need to do that. I will take some time while I am away to think bout how I want to manage the chores I have to do, the visits to Ray and the spare time in between. I do not want to fill my time with joining committees, doing volunteer work or minding grandkids. But although I know what I do not want to do I do not know what I do want to do.

Lenny, I just say "No thank you very much". And hang up. Sue.

My prayers too for your renewed courage, strength and wisdom in all you do. (((hugs))) from Sue.

Congratulations Fred - 8 years in recovery and still going strong. Yes, I too kept a lot of early equipment and we did use it again when Ray had further strokes. Fred, you do inspire others and that gives your life a great purpose. Sue.

Thanks Julie, I am glad the tests went well. I just tried the chat rooms and they seem fine although a couple had "alerts" I still found I could post in them. I was away from home at chat time Tuesday night due to the kidney specialist appointment for Ray. The losing weight would worry me too, by the look of the photo you posted in the Gallery he can't afford to lose too much more. Maybe try a few foods Larry liked as a younger man, food memories are like other memories, some fade and sometimes something from the past (Momma's chicken and dumplings...lol) will be an enjoyed meal. See you next week in chat. Sue.

Fred, I love you comment about a time to be still. That is where I am at too, I think more than I speak now. And I think more BEFORE I speak which is even more important. I think you would have got older and wiser anyway but maybe the suffering the stroke brought into your life made you dig a bit deeper. Thanks for your blogs, they are always thought seeds for me. Sue.

This has been a mixed week. I think I got a touch of the virus that Trev and Edie had as I had a couple of days of aches and pains and dragging myself around. It has been doing the rounds and I hope it has left for good. I also got a few mosquito bites and I guess they were swampies which I am allergic to so got some large painful areas and that ruined my sleep for a couple of nights. Edie, Lucas and Trevor are moving out again at the end of this month. They have found a rental house that is on the right bus route for Lucas’s school and decided to take it. I think it is a bit premature as they were going to wait until a month or so before the baby was due but it is their call. They want to set up a nursery and maybe Edie thought she would do it now while she has the energy. It is a pity as we did all that clearing out so they could move in and now it all has been for nothing. I am be glad for them that they will have a larger space to live in, it was going to be a squeeze here if they had stayed until after the baby had arrived. But on the other hand they will not be saving much money toward their own place so that is a pity. I took Ray to the kidney specialist today and he said Ray’s kidney function was the best it had been for three years. It is “really good”. I asked how good was “really good” and he said about 25%! I am so glad it is not bad! I asked the kitchen staff if Ray could have a lunch meal 15 minutes ahead of schedule and they did that for Ray. They also gave me a pack of sandwiches, so he had half his lunch before we kept the appointment and half when he got back. I think the experience did tire him out a lot though he was still smiling when we got back to the nursing home. We went in a wheelchair taxi, just under $100 for the round trip. Without balance I couldn’t have got him in and out of my car so a taxi was the only viable solution. Luckily the taxi driver was talkative so the miles just slipped by. Ray doesn’t have to see the kidney specialist again as he said there is little more he can do than is being done for Ray, he did suggest a change of one tablet and a variation of dose on another. I have appreciated his expertise at balancing tablets for Ray and it was he who talked me through the change from diabetic tablets to insulin for Ray so he has been well worth the expense as far as I am concerned. As I said before, Ray had a burst blood vessel in his right eye which the nurse says due to an "episode of high blood pressure". It looked awful, totally red and he rubbed it all the time. After a week it has just faded to a red streak so I hope that is the last of it. I am a bit worried about Mum. I took her out into the sunlight and noticed her skin is translucent now. In the past few days she seems to have gone a creamy color as if her skin is paling out and the veins in her hands and legs seem quite blue now. I asked one of the aides who frequently looks after the ladies in her room if Mum was well and she said yes, Mum was fine. It seems as if there are no changes and then I notice somehow she is different. I just don't panic as much now; I think this is just a step closer to the end. The staff and I are getting more used to finding Ray when he goes missing. He self-propels with his good right foot in his wheelchair and often ends up sitting watching television beside someone's bed in the hostel section. The staff like him to get about but I think we're all getting a bit frustrated with the game of hide-and-seek. They have started noting where he is now and I just run from one nurse’s station to another and someone points me in the right direction. I have met up with some other wives now and we often sit under the cover near the BBQ in the hour before lunch, three of them (two husbands, one wife) are smokers and that is why they like being outside. With eight or ten of us around one long table there is a lot of chatting going on and it is very pleasant. The staff are really pleased as they see this as some kind of support group forming. I wish I felt good about all of this, I try to but a big part of me still wants Ray back home. That may not change any time soon. We are able to do so little now that we once did. I know the “Ray might come home one day” is a pipedream or another form of denial but I so wish, wish, wish, it could happen. I do not feel complete without him here with me. I foolishly thought having Trev and Family here would be a distraction but in a way it made it worse. I guess I thought we would be company for each other but with shift work etc that never really happened. I am finding it is hard to get used to the idea of being a woman alone. I will have the week with my duaghter at the end of the month so have that to look forward to. I have some friends and the people here but there are things that there really is no-one who would understand and I need someone to talk things over with. Maybe I need to find a counselor, I have thought about that but don’t know where to find someone who specializes in separation due to illness and the feelings of bereavement that causes. Maybe find out from my old dementia group if someone has any idea on who I can see. Now I have to get to the end of the month, take a deep breath and start practicing being “Sue alone” again. That is until the next emergency comes up and someone else comes to live with me or wants me to mind their children.

Congratulationd Dean - best score ever! Ray did outdoor bowls for a year, finished when his gout pain ( from medication) got too much for him. Sue.