swilkinson

My older son had a throwing up problem and it did ease off about 8 or 9. His was some kind of birth damage and was devastating up to 12 months but gradually reduced. You are working on each problem as it comes along and that is certainly the best way of handling things. (((hugs))) to you all from Sue.

Katrina, trying to get assistance is like trying to find your way through a maze while someone fires a water cannon at you. I experienced a lot of that when trying to find help for Ray. Luckily in some cases someone showed they were willing to help me. I hope that happens to you too. I am glad you found the e-stim worked for you. See if you can find a charity or a supplier that will help purchase one for you. I don't know where you would find out, maybe ask the occupational therapist as a starting point. Sue.

Well done indeed Lenny, another achievement. You are a champion in so many ways. Sue.

You can do it. (((hugs))) from Sue.

Today I was talking to Bob at the end of Caregiver Chat and giving him some probably unwanted advice. The main theme was: "suck it up". It is okay to vent, regret what was, refuse to believe that what is is probably your new normal, like it or not. It is just human to go into denial, want to go back to before (whatever the event that is causing all the angst is) but in the end it is learning to cope, moving forward and developing some new skills and yes, acceptance comes in the end. Given that time frame can be years not days or months that is what we all do, or have done. We've learned to accept what is and deal with it. I did a few jobs and came back inside and wham! I was feeling sorry for myself again. It is wet, it is cold, I am all alone, what I want is to go back to when... you get the picture. So what to do? For me one of the things I do is list things. So what do I want? Company, well no, I will go out tonight to Bible study and I have work to do around the house. One of the reasons I don't go visit Ray on Wednesdays is because of chat, another because it enables me to be home and get some of the small jobs out of the way. I've got a pile of things to do, sorting correspondence, folding clothes, fixing the curtains in the bedroom my guest will sleep in when she comes in July among them. Suddenly I smell smoke and know my next door neighbour has lit his fire. I want a fire, to sit by the fire, to read a book. I don't have a fire. With an old fashioned open plan house built to be comfortable in summer when you need to move air around all I usually use in winter is a small fan heater directed at my feet at night. Well I must be crazy because I went outside and gathered some twigs that were sheltered and still dry and lit a fire in an old old round tray, formerly the bottom of a bird cage. Out in my back yard, I sat by it and read my book until the rain fell down again. And do I feel better? Yes I do. In our modern life we do so little that is elemental. Our ancestors hunted, ploughed, fished and trapped,all in the great outdoors. Their womenfolk probably did some of that and also sewed and cooked, educated children and nursed their loved ones. They had small houses or cabins and while the weather was good they used the verandah to do most of their hand-work, using natural daylight. They didn't enclose themselves in house and car and office, they didn't spend time on iphones and computers and didn't sit and mope. They didn't have time. Their whole lives were engaged in scraping a living and fighting the elements, flood, fire, drought and famine. And I am not sure we have skills to live life the way we do now without losing something in the process - a kinship with the earth. So for me lighting a fire is elemental. I also cooked some sweet potato and potato in the coals. Okay so they are a bit burnt but they are okay, I cooked them, I'll eat them. When we were kids we cooked potatoes in clay, now we cook in foil but the result is the same. A potato without artificial coloring, or flavouring, no fat, no added anything and yet it tastes just wonderful. And connects us back to something we have lost, eating unprocessed food, full of flavor and goodness. Fire, water, air all around us, all available to us. We walk in the fresh air and feel great, we go for a swim and feel refreshed, we cook over an open fire and realise some things we had forgotten. I know all of this is a bit theoretical and hard to achieve for the city dweller so maybe your open fire is a gas BBQ but that is okay, as long as you are out in the fresh air and you are filling your lungs with it and have a more care free kind of feeling that is good to feel. Hey spring, summer and fall are good times to be outside so go find somewhere to experience it for yourself. You'll feel better, somehow more joined into life. I know I do. It is so easy to start a routine that suits you at first but then becomes a burden. If it is the same thing day by day then it becomes mundane, boring, likely to set up frustration and become something you wish you could get out of. I go to see Mum in her nursing home, I go to see Ray in his, I shop, I come home and do the housework. It is not as full on as when I was a full-time, hands on caregiver so I do have too much time to think about things sometimes and that is not always good. I need to keep busy but I do not need that busyness to become a trap, a prison, a way of avoiding life. But however busy I am I always have some free choice. I can go one of several ways between Mum and Ray's nursing homes. I can go the highway, the lesser roads, the road along the Lake. I can shop at a couple of different places. I don't have to do the same things day in and day out. There used to be a saying that went something like: "A rut is the same as a grave, only the depth varies." We don't want to be digging our own graves we want to be digging a garden and planting something pretty for our neighbours to admire, or digging in sand and building sand castles for our children and grandchildren to enjoy. I think that is why I want to sit in the courtyard in the sun at Ray's nursing home as often as we can. Of course there is the benfit of sunshine to lift our mood and vitamin D adsorbed from sunlight through the skin. There is the chat we have with the other friendly folk we share the courtyard with, and passing staff who use it as a shortcut from one wing to another. But we are out in the fresh air, we can see and hear the birds who flutter down to search for crumbs or chase each other through the trees. The smells of leaves and in summer flowers is so much nicer than the smell of bodies and vinyl in the lounge rooms. It is closer to nature than anywhere else in that situation and we are able to go back inside somewhat wind blow but refreshed. When I was five I lived in England so my 4th June birthday was in summer not winter. My mother often took us for a picnic on my birthday but when I was five it rained. No she wasn't going to take me out on a picnic, it was raining. Well I must have had the devil in me and flew into a paddy. So grimly she packed up some sandwiches, some boiled egggs and a few sweets, put my sister and I into wet weather gear and off we went, in the rain. We settled under a tree and ate our lunch, then picnic over, home we went, faster than we had come. I'm guessing my mother was trying to teach me that it is foolish to picnic in the rain. That wasn't the lesson I learned. I learned that you can picnic in the rain if you feel the need to. Today I needed to become comfortable with myself even when it is cold and raining. I think my cookout, however foolish it may have seemed, achieved that.

Happy birthday to Larry - 68 years of wisdom and experience counts so he deserves to laugh. Tell him "hi" from wet and wintery Australia and to keep on laughing at life. Sue.

Remember "Life is what happens when you're busy making other plans" which is a quote from John Lennon's song "Beautiful Boy" but should be also be chiselled into every caregiver's tombstone. It is true of your week. You tried to schedule, the scheduling got pushed aside, slanted sideways and yet you finished the week okay. We all have to acccept change, even Bruce. There is no perfect week, repeat, there is no perfect week. (((hugs))) from Sue.

Thank you for your tips Fred. Any exercise to keep survivors on their feet longer is good. Sue.

I don't know if anyone noticed but I was off air for a week. We had a lot of wet weather and I live on the side of a hill so the ground got soggy and so did the very old telco box buried in the ground that holds the cable...so off went the internet which is ADSL so depends on sound quality. When I used the phone it sounded like it was gurgling and I could hardly hear the person on the other end. I did complain to my telco on Friday and on Monday the gurgling went but my connection didn't clear up. I didn't seem to get many calls, which I only found out today was because it wasn't taking messages either. Yesterday I found out my modem needed reloading, it seems a power surge we had during a thunder storm may have made it default and it lost its ability to connect to the ISP. Woe was me as I tried with the help of my provider's techo with whom, on the phone line, I spent most of the day trying to reload it. In the meantime the person staffing the support desk of the modem support service actually tried some things and in the end, today, after many frustrating days, I was back on the net again. Fortunately just in time to catch half of caregiver chat. How I missed you all! Don't you just hate winter...wet and windy for me, snowing and freezing for you. How I yearn for those hot and dry days a lot of you are having right now. Seems we always want the opposite of what we have got, doesn't it?Ii went out tonight to Bible study so muffled up I waddled like a penguin...sigh. That group is poorly attended and I don't blame people for not wanting to go out in the cold, to sit in a cold church hall for an hour and a half discussing the book of Romans. Just say the rest of us are gluttons for punishment. Some better news. Mum is well, she had a crisis day last week when a fever she had turned into a day of feverish thrashing around and the staff got a bit worried but after a day in bed ( and I suspect some anit-biotics) she is well again. Of course with all of Mum's conditions well is a relative term. Ray also is well, quiet some days but mostly alert and he hasn't had a seizure for ten days or so, so I have much to be thankful for. The best news is that while I was at a church luncheon last Sunday Trev, Edie, Lucas and baby Alice went to see Pa Ray and spent an hour with him. I'm told they took some nice photos of the five of them and a couple of tender ones of Ray and his grand daughter which I hope to share with you when I have them on a USB stick. Oh the joys of modern technology...I just have to remember to call into Trev's with the stick in my hand and get someone to transfer photos onto it and then remember how to download it onto my computer and upload it onto here. Maybe you should just all call in for a cup of tea and I'll show them to you. Saturday and Sunday I called in to see Ray at the time of the evening meal instead of lunchtime so I saw different staff on. Some of the casuals only work on weekends and only on afternoon shift so it was an opportunity to catch up with them. Some of the staff can appreciate what a caregiver does in cheering up the resident and participating in the work, in my case by feeding Ray as particulary on Saturday night he was very shaky and wouldn't have been able to feed himself. I go on most days to feed him lunch, I figure then he has had one good meal in the day. I then trust the staff to help him with the evening meal. It is all about trust, having someone you love in a nursing home. I go to the small group that provides support for the former caregivers at Mum's facilty. Of the 120 or so people who were intially asked if they would like to attend and the subsequent ones whose loved ones have come in since only between 6 and 10 people attend each month. I know working, looking after other family members, looking after the home etc means not everyone can come, but I do wonder if many who would benefit from being part of a small group do not hang back and miss out on the support such a small group provides. I've just been going for three years on and off and twelve months regularly but find it a wonderful group to vent in and find out valuable information and get support from too. Today we had a mother and daughter who really seemed to be stressed out about having to put a very elderly and frail gentleman into care. The emotions were so raw in these two ladies I think the rest of us found it all a little overpowering but we could all empathise having had to put our own loved ones into care. We felt their grief, their anger and their helplessness that this had happened to a fine man, a good father, a community worker etc. We as caregivers and survivors have all been there and done that. We've felt the pain, grieved, wailed and moaned, vented and doubted we would ever be able to feel happy again. I hope time heals these two ladies. I slipped in to see Mum after the meeting for a few minutes but she was sound asleep as I guess she is most afternoons. I had a good visit with her yesterday so I didn't need her to be awake, only comfortable, at her stage of Alzheimers that is all I really want. I also had another visit last week when she was smiling and doing her mumble, mumble "talking" so it was nice to see her animated for once. I am rejoicing in watching my tiny grand daughter growing before my eyes. I know a few sunny days would make my mood lighter and I just hope the modem keeps connecting, so that we continue the stroke journey in each others company.

Hey Axel, I am, like hoststephen, as old as dirt. Good to see you coming on again and catching up with newbies and oldies alike. Good you posted a blog as that keeps me, as Blog Moderator, happy too. You sound as though you have made some good decisions, glad it is all woking out for you. Sue.

*itch, as many times as you like it is your blog and you can use it any way you want. Just a thought though, would it help if you took a couple of pictures of him in the Casino? You can then put a date on them and keep showingthem to him and see if that helps remind him. I am going to the nursing home every day with the same four photos of Trev and family and the new baby for the same reason, Ray is not remembering she is here. Yesterday I cried all the way home, today I didn't, I must be feeling stronger today. Wish I was a fairy godmother - boy I would wave my wand and change things for so many good people like yourself. Sue.

Yes, I had those things I really missed from pre-stroke, like feeling Ray's arms around me and dancing - oh how I missed dancing! You don't find something to replace them, you just learn to live without them. One thing I picked up here - you said "the girls", without Leo you have all girl helpers. Will this create an imbalance and have you some "guy time" replacement ideas if it does? Sue.

Wow! You make me proud to be Blog Moderator! You are a star! You are that rare person who loves a challenge and works hard to make it happen. Two more things I noticed about you. Sue.

Glad you do not have to do jury duty. Sue.

When Dad lived here in the last few months before his cancer took him he suddenly didn't want to eat or drink. I said I would make a milkshake for him using the maple syrup his brother from Canada had brought for him on one of his visits. He agreed to that. That milkshake had milk plus two heaped dessert spoons of powdered milk, one scoop of ice cream and two dessert spoons of Ensure. I then added a couple of table spoons of maple syrup. It blended into a thick shake and Dad just loved it. We called it our Canadian special and he would have three or more a week. So find some kind of drink that is a sentimental favourite and maybe turn it into a food as I did. Sue.

I have been having the dreams again, dreams that have the theme I can bring Ray home if only I...and that is the point where it all goes foggy, the answer is out there I just can't get to it. I know why this is happening. I had a conversation with one of Ray's room mates before I left the Nursing Home on Thursday. *N* doesn't have dementia but he does have reduced cognitive function due to lung problems though so he is sometimes oxygen deprived and muddled in his thinking. He called me back to say Ray wants to say something to me urgently. He said to Ray: "Go on tell her what you want to tell her." Ray sat and looked in the other direction, seemingly unaware of what was going on. Neil said: "Every couple of nights he wants someone to ring you, to say that he loves you." I asked: "Are you sure it is what he wants to tell me? I am here every day and he has never said anything like that." "Of course that is what he wants to do" said Neil. I know Ray wants to ring me just as he rang me from the other hospitals. Once again he wants to say what he has always said on the phone when someone rings me on his behalf :"Come and get me, I'm finished here now." I always say: "Not right now, the doctor wants you to get stronger first." It always leaves him confused and me in tears. Dementia creates so many scenarios that are so sad. It makes it very hard to get through some days. I've copied this from another site I posted it on. It has bothered me a lot but because I was occupied with thoughts of the new baby it didn't seem so bad at first. The birth of our grand daughter was more important. I thought it would bring us a lot of joy and I am still sure it will. But not for Ray. In the end it comes back to the same theme, Ray wants to come home and I cannot bring him home, therefore my brain tries to replay the scene over and over while I am asleep. i don't think anyone can help me with this it is something I have to work out for myself, to reach for acceptance of what is present reality and not what I think I can do in my dreams. The life on my own is not what I want. I know my options are limited now and I try to do the best I can with what I've got. I've got more time but less money. I have options for what I do outside of the time I spend visiting Mum and visiting Ray. I have time to think my own thoughts and do small things I want to do, gardening, craftwork and housework as needed. I do not have the freedom to choose a new life for myself or abandon the old one. From the place I was at when I was a 24/7 caregiver I guess I thought I would have more freedom and that would be great. I did not realise it would be so lonely and somewhat unbalanced. It is nothing like someone thinks when he or she thinks about life after being a caregiver. It is much like the time your loved one spent in hospital without the thoughts of them improving and coming home again. There is no chance of Ray doing that. I see the deterioration caused by the seizures, the TIAs and all that has happened to him since his initial hospitalization. It is almost twelve months since he went into hospital after the initial stroke on May 30th 2011 and the falls that seemed to leave him in a lot of pain and unable to stand properly. I've read back through those blogs from June 2011 and see all the angst this caused me as I struggled to find some way to bring him home, some way to get the extra care I needed. I still go over and over what I did wondering if I had called this organisation or that authority if I would be able to have got enough help to have brought him home. But there was always a brick wall at the end of every path that seemed to lead in that direction. I look at Ray now and I see his often blank expression, I see him struggling with eating, his good right hand shaking and the food almost dripping off the end of the spoon before he can get it to his mouth. I know he is doubly incontinent, hasn't a clue what he is being asked to do most of the time and without a lot of help would not be able to live even the kind of life he is living now. I am glad I found a safe place for him where he receives reasonable care and good food and is warm and safe. I just know he longs for more than that, that feeling of being "home". I wonder when we stop feeling guilty for what happens, for the things in our life that did not go the way we wanted them to. When do we forgive ourselves for all that we thought we could do but in the end could not do? Maybe it is just a part of the human condition.

Have you a trip to Australia planned any time soon...my favourite is chocolate fudge brownies. Sue.

I agree with Fred, my Ray certainly got to be more of a sweet tooth as he aged. I can't eat icecream (lactose intolerant) so I have sorbet instead, mango is divine! Ruth as usual your inventiveness in keeping William exercising amazes me. Keep blogging about what you do as it gives others ideas too. Sue.

Changes are hard whatever your age and Cayden is dealing with a few now so there will be a settling in period. I can imagine how much he misses his sister, the phone bill will be huge! Nice to have you back in chat again, we miss those who go "off air" for a while. It is a small community in itself. Thank you for blogging and catching us up on Cayden's doings, we do care about you, your family and him. (((hugs))) from Sue.

Leah, we all take our own time to grieve, like stroke recovery the first year is the worst. You are doing what has to be done and that is what counts. I know you must miss Jerry dreadfully, he was the centre of your universe. It is good you are going to the gym and agreeing to go out with your caregivers. It will be a while longer before you are ready to go here, there and everywhere but eventually you will want to get out into a larger world than you are living in right now. Just keep on doing what you have to do and it will all change one day. (((hugs))) from Sue.

"Those who care, care much, those who don't care care nothing at all" was the saying of one of my Mum's aunts. When my Mum passes she will be buried with DaD in a small cemetery about ten minutes from where I live. Mum was an only child so I will take a trip to England and place flowers on her Mum's grave there. It is in a small cemetery behind a village school but one of my Mum's cousins paced it out for me in 1998 so I know where to put those flowers. Fred, every blog you write is worth reading and thought prevoking. And not all preachers use a pulpit. Sue.

Yes, hearing your name is special. I don't get that now, Ray has not said my name for a while, Mum maybe three to four years ago. But give me a big smile and I am good. Sue.

Thank you to all who sent me birthday greetings, on Facebook, via email or by posting on here. I did have a Happy Birthday. I can say I was dreading it, first birthday without Ray at home etc but my daughter made it special by coming up with her family to spend the day with me. They then stayed an extra night so went home Tuesday about 10am.The children were delighted, two whole days out of schoo which is what children everywhere love, others slaving away them having an extra few days of vacation. I also had Tori from Friday night till Sunday afternoon. We had a nice time together, played on the Wii, did a lot of Just Dancing duets, ate what we wanted when we wanted. Aged eleven now she is a good person to be with. Then add the High Tea for the Jubilee on Saturday afternoon tea at the church, a hilarious afternoon and her company with me for two days as we visited Ray, all in all a special weekend. She went home about an hour after Shirley and family arrived Sunday afternoon. On Monday morning I prepared a hot breakfast and then Shirley and I visited Mum. It was one of Mum's rare happy smiley days so she smiled at Shirley as we sat out in the sun and Shirley was thrilled, last time she came Mum was mostly sleeping so this interaction was so good for her. As we all know with the very old their condition changes day by day so one day happy, one day sad, one day sleeping etc. It is so good when the visits fall on a day and time when she is more alert though. After a fairly heavy morning tea we all went to visit Ray. We missed him at lunch but stole him away just after he came out of the dining room. We initially went to the pharmacy for ice creams and then across the park, down the long hill to the waterfront and because Craig is strong he was able to push the wheelchair through some grass and along the cycle path by the Lake. Craig with his long legs was striding ahead and we went a long way before he stopped long enough for us to catch up and suggest we turn back! Still it was warm enough to be pleasant and a walk by the Lake is always nice, lots of birds, Naomi counted 21 pelicans on one jetty railing and lots of ducks, cormarants etc. Shirley was a bit concerned that Ray was not speaking, in the whole hour and in the half we were with him he probably only spoke two or three words. I am not sure he really knew who we all were. It is a while since he has seen Craig and the children but as Shirley was here three weeks ago and was always hs favourite I would have thought he would have recognised her. Only time will tell. I will mention their visit a few times and see what the response is from him. Tuesday was a horrible day as I farewelled the family after breakfast, it is always hard to see them go. Then I looked in my handbag for my car keys and they were not there! Not a problem, I know all the usual spots to look but after looking all the right places - nothing. No sign of them at all! No problem, I will fill make my day with some tidying up and look for them as I go. By the end of the afternoon the house was very much tidier but the car keys still not found. I actually forund them this morning (Wednesday) wrapped with the scarf I had taken off when we got back from visiting Ray. I need to go and get a new spare key now so it doesn't happen again. I did phone a friend to give me a lift to Lions as I hate to miss a meeting. Lions Club dinners are held at a local Surf Club, there was a bad weather warning current so along with high winds and rain we could also hear the roar of the sea and the scattering sound of plastic chairs being blown along the outside deck. Only 14 of us at the meeting but we inducted a new lady Linda who brings our total of ladies back up to five. We have had as many as six but seems like we lose one and gain one most of the time. I go onto the Board in July so will be out three Tuesday nights instead of two. Wednesday morning was chat, then visiting Ray as I did not visit him Tuesday. He is very quiet at the moment, he cleared his throat a couple of times as if he was going to say something but never did. Maybe this is our "new normal". With Mum speech was something that was better some days than others though she hasn't done more than mutter for the past three years. But prior to that she would suddenly speak after not speaking for a few days. So I hope Ray is the same. I left him when Bingo started. Then tonight at 5pm Alice Edith Wilkinson was born. I saw her at 7pm and she looked as if she had settled very nicely into this world , thank you very much. She was laying on Edie's chest and looked quite at home. The nurse filling in all the details said Mum and Bub are both in excellent condition after the birth and Edie will only stay in hospital just one night as Alice has some tests to be done tomorrow morning. Both Nanny Robyn and Granny Sue are of course in raptures and we took turns holding her. Her Mum and Dad are both tired but happy and Lucas says he can't wait for her to come home so he can hold her all the time.Edie said Trev and her sister Katie stood up to the birth well. Trev is so happy, his first child has been a long time coming and as we all know being a parent is a very grounding experience. For those who are friends with me on Facebook I am sure there will be photos soon and I will try to post one here too. Alice's birthdate is good 06.06.2012 and being on the same day as the Transit of Venus makes for an interesting story for future generations to hear. I am one tired GranMa so I will finally publish this at 9.21pm on 06.06.2012 my time.

Fred, I keep on thinking of that young woman with no hands, you tell her I keep her in my prayers. My birthday is on Monday, I will be 65. I know Shirley and family will be up tomorrow night so expect to be taken out on Monday for lunch. Tori is here with me now and we enjoyed our "girl time" together. I hope there are birthday blessings for your wife too. I know you will both enjoy yourselves with your family and accept with grace all the fussing and love given to you. You both deserve it. Sue.