swilkinson

Ray and I joined the WAGS (Working Age Group for Stroke) in August 2006. Ray had already joined the weekly at that time discussion and lunch group for men called Scallywags and was enjoying the male company. When a man has a stroke and has to stay home with his partner he can really miss the kind of company he found by working so Ray really enjoyed meeting with the other Scallywags. I just enjoyed the time to myself as at that time I didn’t have carers coming in and Ray and I were together 24/7. I’ve blogged a lot about WAGS over the years, the meetings, the personalities, the Women’s Weekends, the Carers Dinners and Lunches. The people of WAGS have been a big part of our lives. It has been our “real life” support group. Ray hasn’t been to Scallywags much this year. He has had so many things happen to him and although he can’t walk at all now his mobility has not been good all year. We have only been to a couple of meetings too and I haven’t been to any of the luncheons. Despite our absence our friends there have not forgotten us and decided to nominate me for “Carer of the Year”, an award handed out at the Stroke Olympics held north of us at Newcastle each October. Ray and I have never been to one but the reports we have had back have been glowing as our caregivers and survivors come back with medals for scrabble, putting, darts, croquet and a dozen or more simple sports. Everyone says it is a great fun day. On Wednesday night I got a call to say I had been awarded “Carer of the Year” for supporting other carers both locally and internationally through my work here on Strokenet. I was amazed and humbled as I am sure there were many people more worthy of the award than I am. So on Thursday the secretary of the WAGS group and her husband delivered a trophy, mine for a year and an inscribed glass plinth which I get to keep. I was really overcome by receiving it. It is not something you think about when you are a caregiver that some organization will award you for what you do out of love. So it is down to the amazing people here that I got this award. Without your support and encouragement I doubt I would have been able to keep going looking after Ray for as long as I did. You all know how sterile life can become and how burnout hangs over us all like a little black cloud? Well the support of all of you allowed me on many occasions to ignore the cloud and wait for the sunshine to come out again. I’ve told Ray about the award but I doubt he took the information in. Even the news that we are to become grandparents again in June seems not to have been stored. Trevor told him once and I’ve told him a few times but he still seems not to remember. I don’t think his memory works on much now. He is a dear soul, my soulmate, and I visit, sit with him in his room, in the common rooms and in the sun out in the courtyard. I read to him, help him have lunch, even help feed him when he seems too tired to hang onto the spoon or fork which is happening more and more now. But I know he will not even remember I have been there some days. If I seem a bit sad these days, I am. It is taking a lot of time for me to reconcile myself to this parting of the ways, this separation due to illness. The finality of it is cruel. I am here sitting in front of my computer but he is not just in the next room gently snoring, he is miles away. After 43 years it is not death that has parted us but stroke damage and dementia. And of course I know I am not alone in this as I see the sad farewells in the nursing home every visit as one goes “home” and one stays behind to be taken care of by others. Why did the last stroke take so much from Ray? Why didn’t he recover 80% of what he lost as he has with some of the others? Or is recovery of 80% less and less likely to happen? I try to keep optimistic, to keep praying and visualising him well but it doesn’t seem to be working this time. All I am asking is for him to be well, to survive this weekend without another seizure, to be able to hold a conversation, to give me a smile, much the same as I was wishing for Mum a few years ago. It seems such a little to ask. But never fear acceptance will finally come as it has so many times before. With each change comes some challenges, a struggle to rationalise, an attempt to philosophise and in the end an acceptance of the new reality, the “new normal”. We all have to go through the process, survivors and caregivers, each of us fighting to keep back from the edge of depression and the black hole that will swallow us up. I get by with a little help from my friends...as usual.

Nothing to add, just a comment - quince jelly - yum! Sue.

Ruth, glad you were in chat tonight. Sorry I ran out, I had had a sort of meltdown today. I'll be fine when Ray settles down health-wise. Or am I just kidding myself? You have been where I am right now so I know you understand. Sue.

Asha give your wonderful husband a (((hug))) from me for his wisdom and the way he is so good to you. Sue.

Annie Jay - hurray for you! You are now walking and driving and writing articles for your Lions Magazine. You are a miracle! Make the most of the good life you have, don't waste time comparing how you used to be to how you are now. Sue. Ps I am a Lion too, a member of Killarney Bateau Club on the beautiful Central Coast of New Soyuth Wales, Australia.

Debbie, I have a lot of wonderful memories of family gatherings, Christmas parties, christenings, BBqs and picnics in the park. There are memories of the trips Ray and I did after the 1999 strokes in the period 2001 - 2005 right up to the 2005 stroke which seemed to make his conginitive difficulties and his balance issues so much worse. I am glad you and Bruce have got to that stage where the door opens and the world is out there waiting for you. Make the most of it and enjoy it together. Now I just want to enjoy sunny days with just the two of us for a while. Sue.

I had a bit of a meltdown and left chat abruptly today. Those participating in the chat were as usual talking about the difficulties of caregiving. Okay I know all about that, but it is no longer today’s concern. My new concerns for Ray are different. What to do about his new conditions, whether he is on the right medications, whether the staff are giving him enough fluids, is he getting the right food, cut up the way he wants it etc. I am having trouble reconciling being a caregiver without someone in my full-time care. Sure I am still a caregiver to Ray but it is one step removed. I stay with him when he is hospitalized; I sit by him in the nursing home for three or four hours a day. I push him out into the courtyard, read to him, show him movies or episodes of his favourite TV shows on our portable player. I go to the nurse with his complaints or with my own queries. I still Google his medications and check with the pharmacist on whether he is on the right medication for his various conditions. I even stay and talk with the doctor. But I don’t stay with him 24 hours a day as I did before. I wish we had a new name for those who are separated by their loved one’s advancing illness, the sort of illness that has taken Ray into a nursing home because his care needs are higher than one person (me) can handle. I wish I could feel that I am still his main caregiver but somehow I don’t. The staff of the SNF now handle his day-to-day needs. I feel like an imposter, a loser, a person that can no longer cope. I know it is irrational to feel this way but it is how I feel right now. I go to a few other sites on stroke support or dementia support and on one dementia support site there are a lot of “midows” married women who like me are separated from their husbands by the progression of the disease. Like me they visit, sometimes for years, before their spouse succumbs to one of the more common causes of death, strokes or heart attacks, pneumonia, the frailty of old age, other illnesses such as cancer, and their journey together ends. NO, no, no. I do not want Ray to die. I just want us to live the way we once did – together. Now I need to rationalise all of this. I cannot go on doing my “wishful thinking”. It goes something like – “Ray will get better and I can bring him home”, or ” the kids will all move closer and between us we will be able to look after him” or “maybe if I used all our combined savings I could hire someone full-time for a while and then I could bring him home”. Okay you know where I am coming from so I guess you could think of some more scenarios. We have SNFs and other care facilities because we need them. People get old and frail and need care, Ray got sicker and frail and needed care. It is logical for others to say to me “honey, you have done your best for twelve years. Now it is time to turn his care over to others." My head agrees but my heart says: “NO, no, no.” So maybe I need to change my status back to “family” and do a “family” chat instead of a caregiver chat now. Maybe I need to sort out my feelings a bit more so I know when to post on a current caregiver’s pain and when I need to realise that I have had a lot of experience but that is changing now. I need to come to grips with the reality of my new situation. We have two experienced caregiver chat hosts in Sally and Sarah. Sally is always on Tuesdays and Sarah and I share responsibility for Thursday nights, though we are often there together. Maybe I need to start a new chat for people who are like me, once removed from the problem of 24/7 care, still caregivers but not actually hands on now. I will have to think about it. I have loved being a chat host and making friends who seem closer some days than those I used to have in real time. But I want them to have the best advice, and I am not sure that is what I can give them right now. My life has changed and as we all know: life changes and it doesn’t change back.

We'll be thinking of you Mike and Kitty and her family too as they wait to make sure you are okay. We'll look forward to talking to you next week when it is all over. Sue.

I am still trying to decide where to put Ray into permanent care. Where Ray is now is good for the stage he is currently in, where he can use his good leg to self-propel himself around in his wheelchair. He has access to the gardens straight outside through the French doors in his shared room. His room mates often open the door for him. Where Mum is you have to ask staff to be able to go outside. The ancillary staff members have shown me where to make myself a cup of coffee now so I can have one any time and when I go to the dining room to help Ray with his lunch the girls bring me a cup of coffee to the table. The nurses and aides seem very caring there too. The facility has nice gardens in closed-in courtyards. There are plenty of shaded areas too and plenty of parking but it is 25 minutes drive from here. The advantage of where Mum lives is that it is closer to home and I know most of the staff. It is also closer to our local shopping centre so I can buy a "thick shake" on the way, maybe even push Ray to the centre in the wheelchair if I have one of the family with me. Where he is now is more isolated. Both facilities seem to be good so it is a hard choice. Ray was very slow on Friday; he kept dropping the fork at lunch so I finished up feeding him. It could be the change in anti-seizure dose. I hope not another TIA. Poor man, he is so over this I am sure. He kept telling me he was tired and "just wanted to go home to bed". I almost cried every time he said it. On Saturday I spent six hours in hospital with Ray. He was unresponsive at breakfast so the nursing home staff said, so after monitoring his pulse, blood pressure and sugar level and finding all results good they left him there. Someone came back later and he seemed to be sleeping. He was not responsive at morning tea time, but again seemed to be in a deep sleep. Then at 11am the staff decided it was getting serious as they could not rouse him and decided to ring me. As I was not home so they called the next number on the list, my younger son. It took my kids about an hour to remember what I was doing and Trevor finally caught up with me at the nursing home. I had had morning tea with some friends from Ray's stroke support group. I guess I will have to have another mobile phone so people can reach me and stop panicking! Being without one has allowed me to be “out of reach” when the in-home carers were here but it is different when the nursing home staff need me to contact them urgently. The ambulance again took Ray to the local hospital as they did last Sunday and again they carried out tests and said there was nothing really wrong. So we wonder if the seizures are stroke related or dementia related? We don't know. No new treatment was recommended although they did do a lot of blood work etc. I left at 6.30pm with the in-patient ambulance due to pick him up in an hour or so. This morning one of the nurses who was on yesterday was still anxious about what course of action we should have taken. Is it wise to just keep him in bed or did we do the right thing sending him to the hospital? Two serious seizures in less than a week is too much. Surely something must be out of balance for this to keep happening? Ray was marginally better today. The morning staff left him in bed to rest, I didn't object. Ray and I didn't go to the Sunday concert instead we did some word puzzle words after lunch and after twenty minutes I could see he was struggling to keep his eyes open so I lowered his bed head down and settled him for a nap. He doesn't look well and his voice was weak but he may be just tired from the exhausting day yesterday. I know there must be others here who have had experience with seizures personally or within their family so any advice would be very welcome. The whole thing really worries me right now. Sue.

Mike, there are a lot of changes in life and each one requires a process that leads to acceptance. I am glad your family think you are kinder and more undertanding of others. Mind you I think you always were. Sue.

Enjoy your mini vacation Fred. People watching is as good a sport as any. I sit a spell and watch sometimes in busy places, wondering who they are, where they're from etc. I always ask people with accents particularly as conversations turn into travellers tales and you have made someone else glad they came. Sue.

Oh Jeannie, so sorry to read you burnt your foot. Like you I have done some pretty impulsive things that have resulted in injury, we all do. Sorry it resulted in a burnt foot, burns are so painful and take so long to heal. Hope Carl and you get on okay, ask your church friends for help if you need to while you are healing. Sue.

Thank you Lenny, for thinking about your wife and others who care for someone. I hope you have a great Thanksgiving Day in Canada. Sue.

Lynn great you had a good holiday and that home made icream sounds delicious! Enjoy the good things in life while you can. Thanks for reminding me: " I always try to put those negative thoughts out of my mind as soon as they try and creep in." I am second-guessing myself about Ray's care and I need to just go ahead and make a decision. Thanks Lynn. (((hugs))) from Sue.

Welcome Mandi, glad to have you on site and asking questions. Those who ask questions get answers that can be read by those too shy to post so you are helping a lot of people. Educate yourself about stroke, find out what your Mom has lost, what can be recovered, what you need to do to be her cheerleader, assistant therapist, befriender as well as daughter. It is a hard job but there is a lot of reward in seeing someone improve because they are getting the help they need. We are glad to have Debbie to comment as she has insider knowledge as a nurse and a caregiver so she is usually spot on. Keep blogging and we will all help and support you as much as we can. Sue.

I'm guessing this is awkward all round because yes they do want to have you continue as his caregiver and maybe are slowly realising this has to be on your terms not theirs. I am gald you feel better about it all now. Even if it is only a temporary solution it will buy more time before a permanent decision is made. Sue.

Ruth, I can feel so much for you. I am happy enough with where Ray is now to consider leaving him there but as you say, finding him in a wet diaper and for me finding the thickened drink on the side out of his reach are two of my pet hates now. The kids wonder why I am there most days but it is to make sure in my own mind that he is "safe". You need to be well too so make that your priority for now. You can better plead his case when you are better. Just a thought from what I heard from another SNF - find out if they have a "three a day" policy on changes, you may need to provide his pads so they can change him whenever he needs to be changed. Sue.

So speaks the Guru Asha,so listen up Mike, life changes and acceptance changes us for the better. We get older and wiser. Years ago I had viral pneumonia and six weeks on the couch to get my lungs to return to normal, so I have experience of watching others do what I wished I could do. You'll get better and stronger after the op - but it will take a lot of patience to do so. Sue.

Debbie, I think this is another blog the people new to stroke should read. It really demonstrates that their time can be used on a way that saves their caregiver some time and effort, leaving the caregiver to do many other chores instead. I know Ray would not have been able to do so because of his lack of process thinking. I do have a friend whose husband is a member of our stroke support group and he is really into specials and coupns and is rightly proud of his achievements in budgetting. I can only envy you, not in a sad way but also rejoicing in what it means to you to have Bruce so keen to do something to lighten the load. Bravo Bruce! Sue.

I’ve been away for a few days and Trev got to sit with his Dad in hospital on Sunday when Ray had another seizure and the nursing home staff sent him to the nearest hospital for more blood tests. He has to have his seizure medication increased. Today they gave him a “whiff of oxygen” to get him alert enough to get up out of bed so looks like things have changed again. He has been through so much this year and yet he still has a smile for the nurses. I have just got back from the south coast – rain, rain and more rain. I took Lucas down with me so the two grandkids down south had someone else to play/fight with. Interesting watching who played with who at which game. I love them all heaps but being closed in with them over seven days of bad weather got a bit wearying. The weather should be warming up again but seems to have gone back to winter. The long weekend, first weekend in October, is usually one where families go camping so I felt sorry for all those under canvas. It was bad enough inside where we were dry but not as warm as usual as the heating had been turned off. At least we got another week’s wear out of our winter blankets; I had to ask for another one as the downstairs bedroom was freezing at night. The fun part of being with the grandkids is doing the holiday things, so I went with them to see the new Smurf movie, ate popcorn and had a special drink. I laughed in the right places in the movie but I am old enough to remember the last Smurf craze. Now I really wish I had kept all those figurines. We went to the church’s Teddy bears Picnic on Saturday afternoon and my team won the balloon game with a lot of laughter. It reminded me of my days as a Tupperware dealer when such games were in vogue. We also had morning tea out a couple of times and walked on the beach on a day when there were some sunny spells. I went to see Ray today and he was very sleepy. He had been in bed all day resting which of course is not good for his circulation, mobility etc. The staff assumed he needed a couple of days of bedrest after having a seizure. I’ll make sure he gets up tomorrow. I want to say to the staff: “How will this all end? What is the prognosis? Show me how I will get through all this” but I know there are questions no-one can answer. I wish I was more patient and could just accept that life has to go through certain processes and then the end comes. But it is hard to get my head around all that. I spent a year as a voluntary hospital chaplain and have seen it all before but somehow when it is your own beloved laying there you are so vulnerable. I also went to see my Mum; she was in one of the common rooms as her new room mate cries out so they keep the other three out of the room as much as possible. Dementia is such a sad disease. The room mate is also younger than I am so it touches my heart too to see her so distressed. Mum is mostly asleep now. Again I want to ask: “Is this the end now? Will she go to sleep one day and not wake up? When should I bring the family with me to see her one last time?” but those too are questions no-one can answer. The good news is that I am to be a grandmother again in the middle of next year. Trev and Edie are to have a baby and Lucas will be a “big brother”. He admires Christopher as the big brother of Naomi so the next little girl or boy will have a strong protector. I am glad this is happening now as the family needs something good to look forward to. We speak too much of death and dying. There are still many things to be done before I have fixed up the paperwork for Ray so tomorrow it is back to that. I am glad I had a break as I was getting too tired with all of the aspects of the transferring of Ray’s full-time care to others. No-one can care like a caregiver at home can but when she/he cannot do all that needs to be done the only choice is handing over the care to others and that is not easy to do. I am hoping for a few sunny days to get some spring cleaning done, air out the house and introduce some bright colours back into my life. I am so over cold, wet days.

Happy birthday to you. Happy birthday to you. Happy Life, happy Living, And many more of them too. (((hugs))) from Sue.

Kim, welcome back. I remember you from four years ago and the way you took care of Chris. Like all caregiving it was at times a hard job and you did it well. As Debbie said we have all moved on and if you read old friends' blogs you will see that. Time and tide.... I'm glad you have a new relationship but sad you have some feelings of guilt about that. You need to find some way to release yourself, for some it is a visit to the resting place and a conversation about the new partner, a visit to the church or chapel, or some place you used to consider yours. I've known people throw flowers into the sea at their favourite holiday spot or write a poem and pin it to a tree, I am sure you can figure out what to do. Ritual is a part of our farewelling and you need to leave guilt, grief and the sense of loss behind at some point. Welcome back (((hugs))) from Sue.

Four leaf clover coming your way. You could certainly use some luck. And getting some support from the people in the family would be nice. I can see it is a complicated issue but you are doing your best and people should acknowledge that. I hope the meeting is fruitful. Sue.

Lots of smoke in the air for the past week so everyone was talking about the summer bushfire season and how the undergrowth is drying out – so we while we are distracting ourselves with that we get a FLOOD! I was getting ready for church yesterday when the light rain we were having suddenly turned to a downpour. No worries, we’ve had plenty of those before. Then the rainpour seemed to increase and increase until our backyard was a sheet of water and the road was a river. Then the gutters choked and into the back of the house it poured! Panic stations! Luckily Trevor was over here already as he was checking my side drains so buckets appeared and we emptied them as they filled. It was about half an hour of heavy, heavy rain and then it slowed down. This is when having a carpet cleaner helps, Trev got as much water off the floor as he could and I used heaters to dry up the rest. Carpet over concrete can dry out fairly well so not a lot of lasting damage. Our suburb was on the news last night with the highest rainfall total and pictures of road closures all around us. I spent most of the day listening to the rain falling down and praying that nothing worse would happen. Needless to say I didn’t go and see Ray as I wouldn’t have been able to get over some of the flooded areas. I read and sorted out a few things and had as restful a day as I could listening to the waters of the whole hillside pouring down past the side of my house. Woke up to the sunlight streaming in my window this morning so panic mode OFF. We have lived in this house on and off for forty plus years. We didn’t used to have the trouble with rain water we do now because it was just a house on the side of a hill. But as others built higher up, made terraces for swimming pools, build huge stockade style gardens and altered the contours of the hill, the drainage has altered dramatically. In the old days you would have just got a survey done and notified the neighbours of the alterations they needed to make. Now as we know life is far more complicated than that. So rather than face court cases I have just built bigger and deeper drains to carry the water away. As I age and am no longer as strong I need to consider moving rather than having to cope with all of this summer after summer. The rain pouring in poured over the area my computer was in so we yanked all that out of the way and dried all the equipment off but I only re-installed it this morning. I am getting so skilled at this, pity I don’t know how to fix my laptop so it goes onto the internet again with the new modem/router. I will have to leave that to Trevor to figure out while I use his old computer for Strokenet etc. I am going to be away for a few days down with my daughter. I am taking Lucas too so he can catch up with my grandchildren down south, his new cousins. I will miss both caregiver chats this coming week. Hopefully next week I will be up and running again so I can get back to you all. I really miss life in cyberspace when my computer is down. I have become addicted to knowing what is going on with all my cyberspace friends. It’s a funny thing but I think of all of you by your username, mostly I guess as I don’t know what your real name is. So Fred you are still Scooterman for me as well as my friend Fred from Fort Hood, Texas and “fking” when I see a reply to one of the posts or a comment on the blogs. What a big difference finding Strokenet in May 2005 has made to my life. I have seen so much goodness in strangers who have become friends now. I’d like once again to extend to you all my thanks for your participation here on the blogs, your good advice, your loving support and your thoughtfulness and kindness. Thank you for your PMs and the messages you send me via email and for those of you who do so your comments on my Facebook page. As our world has closed in on us due to stroke and dementia our world in cyberspace has expanded. And that is largely due to lovely friends I have made on here. I love you guys and gals.

Won't see you in chat as I will be away for a few days but I am so thankful you came through it all okay. I'm guessing it was different technicians and equipment needed for the defibrillator to be installed so as usual you go to the bottome of the list again. Sue.