swilkinson

Medication certainly makes a difference. We were out today when Ray was feeling some pain. Luckily I keep some pain killers in my handbag just in case. Hope you are much better today. :friends: Sue.

I have too much time on my hands in winter. So I get too much time to think. That is bad when it is obsessive and introverted, which it can sometimes be but not bad if it allows me time to trim my sails and make some adjustments to my future path in the journey of life. I drove past the beach yesterday and despite the cold dark look of the ocean there were a few hardened board riders out. That is how it should be. We need those people who know the ocean well. We belong to Lions and our Club dinners are held at the Surf Club Clubhouse so we have a lot to do with the Lifesaving Movement and regularly donate money to help supply equipment etc. I love the beach but I am not a strong swimmer so admire those who can read the ocean as they do and look to them to keep me safe. In the journey through life we come across a lot of dangerous shoals. It is good if there is someone close by who can say: “No, not that way, come this way, it is safer.” Of course we can choose not to listen, go on blindly doing what we want and make the journey much harder for ourselves and the people that ultimately have to rescue us and set us up again. But we are wiser if we at least listen and make some adjustments governed by what others observe in our situation. I fear that on the stroke journey many are doing just that, denying the reality of what is happening and doing things the hard way, shutting out the advice of those who would help and trying to do it all by themselves. If you are reading this of course you are not in that situation, you have come looking for help and are heeding the lifeguards shout. So what do we do with advice? I’ve said in a previous blog that an old friend of Mum’s used to say it is like eating a chicken, you eat the flesh and spit out the bones. In other words you take the advice that seems appropriate for your situation and use what is good in it to make some changes. I have been very lucky in my life that at critical turning points someone has been there to shout: “Not that way…” and so I have avoided making some big mistakes that would have changed my life radically, and not for the better. Though in a few cases I have ignored advice or wise words and gone my own way and had to suffer the consequences. So you come on here and read and see the examples of others and what they are doing to get well if you are a survivor or learn from others how to care if you are a caregiver. Good first step. Then you look at your own life situation and with those glasses that allow you so see the truth and know the truth say: “What can I do to adjust this situation. Is there a better way of operating here?” I think that is one of the benefits of chat. On good days we have time to put a question out there and get some answers. It may not be the answer you were expecting or looking for but it is like suddenly seeing life from someone else’s perspective. And as we are all in the same situation or roughly so you can rely on the person answering to use his or her learned wisdom to focus on a problem. It is the same with posting a new topic. You ask the questions, a lot of other people type in an answer or a response or offer support in some form or other. Again because they don’t know our circumstances the answer might not fit the problem but at least it gives us more to think about, stretches our horizons a bit and gives us at best a new insight. It is like the lifeguard in the tower who sees so much further than we can standing on the sand. In viewing the blogs we are very lucky to have that precious privilege of seeing life through another person’s eyes. I have read answers sometimes and wonder how the person got there from the question I asked. It sound so easy when your mind is not clouded by denial, high expectations, trying to do what is best for all etc. For all of us struggling with a new situation reality bites. And recovering from reality bite is like recovering from shark bite. You have to go get some first aid, look after yourself and make sure the situation is monitored. So we do seek advice and see what the treatment is and follow the instructions. How do I apply this to my own life? I read here and on a couple of dementia boards as Ray’s dementia again alters our reality. I seek some personal help from a counselor, well at the moment that is not happening as the worker can’t really help me as she is trained in another field, but I will eventually find someone. In the meantime I can ask my questions of appropriate people. How do I do this? How do I cope with that? If I wanted to do… how would I go about that? I am often so bogged down in caring for Ray that I do not see my own life at all. It is like having your face in the water looking down, it is okay for a while but if you keep it in there too long you drown. So I need those lifeguards to look out for me. Friends or workers or others who can help me direct my path so I eventually complete my journey.

Fred, we all are unseeing to the plight of those around us who have made our country what it is today. My Dad was a soldier in the British Army in the Second World War. He was captured in Greece and marched to Germany, went through many privations as a prisoner of war before the War ended and he was released and allowed to find his own way home! My Mum made airplane parts in a munitions factory close to where she lived. She worked 12 hour shifts for the duration of the war. Many fly boys would not have been in the air at all if those women had not learned to use a lathe and other machinery to make the spare parts. I don't think the succeeding generations will ever know what a sacrifice those men and women made, or how we owe our democratic way of life and our freedom to those brave, resourceful and hard-working men and women.

Wow, 20 people for Sunday dinner! I grew up in an area where the population was mostly from Europe and the wonderful smells that came out of every house as we walked home from church was just a part of my Sunday growing up. I had friends in a lot of the houses and if the "momma" walked towards me with a plate I said: "yes, please" no matter what it was. So I ate food I've never heard the name of. Glad you are in part following on this wonderful "family dinner" tradition. It happens in too few homes these days. When I am 70 I hope my family love me enough to bring dinner occasionally. Nice to be able to read your blogs again. Sue.

Hey AJ, I am still here too, still hosting chat on Tuesday nights, the caregivers change, some come some go but the problems tend to have a common thread though - we are all tired and worried! Nice to see you back on here blogging, you are right the support is so good. And a lot of wisdom comes out of others comments. I don't know what I would have done without it over the past four or five years. It is such a help when the black clouds come over. Sue.

Tony, there are relaxation techniques you can learn that help when you are not sleeping to at least relax you and make you feel more comfortable. Maybe you could find some online and see if they help. I hope you find a way of getting more sleep soon. Sue.

I guess this is a learning time for all of us. I have just loaded Google Chrome too so I am trying to learn two new things at once. Soon I will be multi-tasking...lol. At least you are trying to make sense of it all Ruth. Sue.

The carer who comes on Friday to look after Ray for my three hours respite had a long talk to me this morning. She had been worried that she has been minding Ray and has not had any training on looking after people with dementia and took advantage of an offer to go to a seminar and said she learned a lot that will help in her work. The mentor who runs the support group I go to ran the seminar. He is excellent. I have learned so much by going to that group. She had not been able to stay for question time so decided she would ask me her questions. I could answer some of them out of my experience with Mum and Ray so she was happy with the answers. There is a saying though: “If you have met one person with dementia, you have met one person with dementia” which means all dementia sufferers are different with different cognitive levels, different behaviours and different problems. I guess there are some commonalities and if you work with dementia clients on a regular basis you get to recognise some of them and work out how to deal with them. She gets on just fine with Ray. She asked me if I ever felt tired as the mentor had stressed to the care professionals that the caregiver was acting and thinking for two. That is certainly how I feel at the moment as if I am walking and talking for two, escorting Ray for all his medical appointments, filling in the forms, answering the questions on his behalf etc. I am glad she went to the seminar, at least that is one more person who knows what it is like to be part of a household dealing with dementia. I took Ray for the cortisone needles today and although for some reason I thought they were looking at his ankle the needles were actually into the bottom of his spine. If he is still in pain by next Wednesday he needs to go again next Friday for another one as it means they have given him too low a dose. I hope something works soon as both he and I are having broken nights sleep and that never sweetens my temper! We did go out last night with the friendship group and I was glad in some ways we did but listening to everyone’s plans for a trip overseas, a long stay in a warmer climate at an expensive Resort, a caravan expedition up the coast to northern Queensland etc it is very hard for me not to feel envious. In some ways they all come from the Planet Normal and I don’t. They all enquire solicitously how we are going and give Ray a kiss and me a hug but I know they will never know the feeling of isolation all of this sometimes brings on. Just talking to my older son who was complaining how tired he is, how busy his job is etc. As he works for a firm of funeral directors and this is winter I guess this is peak season for them and a very busy time indeed. I am glad he has a good job and earns a good wage to keep his little family going. Like we did he will find having three children is expensive and it never was easy to make ends meet so a good wage coming in helps it all happen. Funny how this generation acts as if no-one else has ever been through this though. So…what does the future look like? Hope it is soon pain free for Ray and I have the strength to keep going looking after Ray. It is winter so I can make that the excuse to take some time at home, to maybe clean out some cupboards and finish off some of my craftwork.

Ray and I went and picked up the bone scan today and naughty me took out the report and read it. I did medical terminology so had a fair idea of what it said. Sadly Ray has had many many fractures and bone bruises from falls and signs of arthritic joints on his left (affected) side, nerve damage caused by stenosis (narrowing) of the spinal canal etc. It is so sad he has prematurely aged so much. I could also see why he has so much pain with the equivalent of a pinched nerve and the heel and ankle problems. The way forward at this stage is cortisone needles into his left heel, and I am hoping the doctor recommends some physiotherapy to help improve his walking. He is so hesitant now with his walking that to take him out to the car can take ten minutes. I am still reluctant to take him in and out of the house in the wheelchair but that will be what happens in the end I guess. Or worse he will be in a wheelchair permanently. I’ve had three interrupted nights sleep in a row so I am tired through the day and unable to sleep at night. I have cancelled all our activities for this week to give Ray an easier week but that means missing a dinner with some nice friends on Thursday night at a restaurant I wanted to go to. It is something we only do every three months or so. I hate canceling out as I really look forward to these get-togethers. I have enough of meetings, church, serious stuff etc, a night out with friends is simply light relief. Winter, wind and rain and cold nights, all add up to muscle stiffness and discomfort for Ray and several colds and chesty coughs for me. When Ray is sick I hasten out of bed in the middle of a cold night, race around without socks and shoes on, in and out of the house if I have to get the wheelchair, no wonder I am getting cold after cold. I just pray all of this settles down soon. So no craft today (too windy and cold) no Kids Club tomorrow afternoon (too late coming home, too cold etc) and by Friday I should be stir crazy! I like a busy life but fear that with Ray’s worsening conditions this will soon be a thing of the past unless I can get a good deal more help I did drop some things in to Mum today as I had been cleaning out and found some more of her nicer sweaters and thought she could use a change. She was asleep so I didn’t wake her up. She looks so little now. Most of the ladies were asleep. As it was nearly lunchtime the aides were waking them to go to the bathrooms and getting them ready to sit down in the dining room. It is strange that life is so routine for them, these once so active ladies. Please pray for us, for healing for Ray and for strength for me to carry on and do whatever needs to be done.

Don't know if this is relevant or not. When I was young I lived in a village with a lot of old people so I though everyone lived to be old. As I grew up I had a friend die aged eight of brain cancer, another at twelve, result of an accident, a third at fifteen, drowned, another at 20, diabetic coma and so I learned that people die. Good people die.We may have an animal body but I also believe we have a spirit that lives on. If I am wrong then I know that we still live on in the hearts and minds of those who love us. I am very sorry for your friends who are so ill, I know if doesn't seem fair but as I learned from a child people do die young. Those of us who survive have to carry their memories with us and tell each other stories about them to keep their memories going, and in that way they live on. Sue.

Not a recipe for me on a low fat diet but it would be a real hit at a brunch. I voted for you a few times already. Sue.

Tootie has my prayers as do your whole family. I hope this new medication is the answer to the seizures. What a brave little person she is and may God bless her for it. Sue.

Debbie, our Fathers Day is the second Sunday in September so it is often around Ray's birthday which is 8th September so we used to celebrate both together in our "come for a family BBQ" days. My Dad died 2nd of January 2000 but I will miss him for life and that is how it should be when a good man goes. The 19 year old is in the "moving on" generation, I am in the "stay and make a go of it" generation, we are poles apart. Bob and Pat may be in the generation in between which had a different basis for decision making to what I do. Dan sounds like a likable and caring kind of guy. I am glad you have such good friends in your life. We need friends to keep us going. An old friend of Mum's said that taking advice is like eating chicken off the bone, you eat what is good and throw the rest away. You'll know what is good for you and what is best for Bruce too. Sue.

Yes indeed. All that loss does slowly diminish and in it's place there are some gains. The gains for you good wife, good mother, good friend to all of us on here. Asha, you have a greater value than before because a good wife is worth more than rubies. Sue.

Ruth, decluttering is about a decade behind at our place. I attack it from time to time but it has to be a day when I am strong emotionally or I throw out stuff and then second-guess myself for weeks. I agree that William will occasionally do things that are a one off and then maybe again in three months time. You never know what to expect with recovery. I enjoy having you in chat now, we have a great group and it is like girls-night for me as I never get to do that in real time now.Chat again on Tuesday, have a great weekend. Sue.

Stu, everything changes and with after stroke recovery it is either go forward or go backward so keep up the exercises etc and you will be fine. Congratulations on turning 60. Think of it as entry into the wisest time of your life. Sure you were a young buck at 18 but if you met you then what a lot of learning you still had to do! I agree with Stessie, eat well, sleep well, exercise, have fun and you have many good years ahead of you. (((Hugs))) from Sue.

Donna I know you are playing Bejeweled etc as you are one of my Facebook Buddies. I also know that you need to reach for new things to do. Just do not forget us here at Strokenet and keep your friends here current on what is happening in your life. Good friends are hard to find and worth keeping in touch with. Sue.

Sometimes we’re up sometimes we’re down. Oh yes, oh yes. It is getting that way, back on the roller coaster again. Not that we are always in pain, sad, exhausted, worried sick etc but that some part of the day it is so. It is Ray who is in pain, bad pain, almost crying pain. He moves slowly, like a very old man, he needs help to get out of bed and he needs me to push him in the wheelchair as he can’t walk. He sits in the car and sighs and groans and clutches his left leg. And I do not know what to do. Today he had another kind of scan. The radiographer kept coming back with questions: “When did Ray damage his back, when did he break his ribs, when did he break his hip, when did he break his pelvis, did he break it in two places or one?” I felt as if I had brought in an accident victim or a broken old man. It made me feel guilty, as if there was something I could have done about it all, like taking better care of him or something. Maybe I should call an ambulance every time he falls but how can I tell when he needs an ambulance and when it is okay for us to assist him up if he can’t tell me if he is in pain or not? I don’t want to keep sending him off to hospital because I know it would not be long before a gerontologist or a specialist of some sort told me I couldn’t take him home because he is beyond living at home now. I am not a burnt-out carer I am a worried wife. I have a husband who has so many things wrong with him now that it is difficult to sort out what is the dementia, what is the diabetes, what is the fall damage etc. Ray says his little toe is on fire, that it makes his leg shake, that his backache is so bad it is worse than what anybody else has experienced. BUT when he sees the doctor it is all fine and okay, yes, he has had pain but it is not that bad. I don’t care if we never go to another specialist, or have another x-ray, or see inside another pharmacy. I want a fairy godmother with a nice 2010 version of the magic wand to flick that down, say the magic words and MAKE IT ALL GO AWAY! And then Mum has had maybe a couple more TIAs in the past month and so is sleepy again and not responding to my visits and I feel down about that too as I love her and want her to have a peaceful decline and death rather than so many little strokes. She is a survivor though, in so many ways, a really tough little person. But there are also ups, for me at least. On Tuesday night my Lions Club honored me by making me “Lion of the Year”. I say it is because of me looking after one (sick) Lion all these years, they said it is because I fulfill the Lions Club ethics and ideals. Either way it was so wonderful to get the award. I was puzzling out who this nice person the President was speaking about was and then he said “awarded to Lion Sue Wilkinson” and I was so amazed I was speechless and my dinner neighbour had to prod me and say: “Up you go then” to get me to walk up and receive the plaque. I sent out some very excited emails as soon as I got home from the dinner and I am still getting congratulatory messages about that and the Bishop’s Certificate and it is really good to have some positive news to tell instead of all the negative new that is part of our present journey. Sometimes it feels as if the good times come at a price. And I can understand why people cherish those quiet, dull, ordinary days when nothing much happens either good or bad and life just goes on. Because I value them to and hope we come to another pleasant plateau like that soon. I have just spoken to John, the stroke survivor who runs Ray's Scallywags group to tell him of Ray's condition. He said he will be sad if Ray can't come for a while as he knows how much Ray enjoys this group. But if he can't come for a few months that is okay too, to give it time and see how it goes. Falls and other complications do cause members to drop out and that is an inevitable part of life. I just hope that this set-back is a temporary one for Ray.