swilkinson

Wow, it is just plain ol' Friday here and it will probably be lamb chops, mashed potatoes, peas and carrots and shredded spinach with lamb and Rosemary gravy. But Happy Thanksgiving Rolly and good to see you posting again. Sue.

It's only been six days and I am tired already. Having Ray come back home was a big adjustment for us both. We have lived together for 38 years, the last seven of which I have been a full-time caregiver for Ray. It was marvellous how quickly I took to jumping into the car whenever I wanted to go out, choosing what I wanted to eat and when and having a full bed to myself! It was like the doors of the cage had opened and all the world was mine. Not anything like it is whan he is home and fully my responsibility. For him because he had had a staff of twenty five looking after him and all the others ( it is a 80 bedroom hostel) and that meant someone checking on him all the time. His medication, meals, snacks and drinks all appeared like magic, his bed was made, room cleaned, towels changed, even better than a high class resort. And there was entertainment, bus trips, and a couple of special concerts. It really is a great place to be for many of the oldies there. That is the ones who have decided for themselves that this is what they want. Apparently a few are still stuck in "when I go back home". For those of you who have never had a break I know this must all sound very self-centred. I realise I was lucky to have the freedom, if only briefly. I do feel much rested, but sleeping with someone who has clonus ( a very jumpy left leg in Ray's case) who groans and moans in their sleep, gets up five or six times through the night etc. suddenly seemed to limit the sleep I was getting. So today we went out and I ordered our new twin single beds. It was a very expensive exercise but if it will help me to have a good night's sleep and wake up rested and refreshed then it will have been worth it. I think I dealt with all the issues that arose when I first thought of us in "separate beds". It has taken quite a while to fully decide this was the next move but I am happy to have made the decision now. After all the angst it was actually breaking one of the legs off our old marital bed that brought the decision into the present. It was a kind of "burning your bridges" I guess and hopefully we will still remain in the same room for a while and this will just be part of the process of change and one we have made as a free choice. I met a couple of people while I was out shopping today, both fairly recent widows and this brought another issue into focus. Most of the time I can ignore the problems Ray has in addition to his stroke deficits, but as one woman talked about her late husband I realised that a lot of what he had was similar to what Ray has now, only Ray's is at an earlier stage. It is hard sometimes to face facts, I am very good at kidding myself that all is well in my world. But medical facts somewhat complicate that optimistic view of life. I'm thinking that although we don't celebrate Thanksgiving in Australia ( it is peculiar to USA) maybe I could sit down and write out a list of things I am thankful for. Our earliest colonial settlers were first imprisoned and then emancipated convicts who had been transported from England and Ireland and didn't have a lot to be thankful for. Our latest arrivals, most of whom have come from some war-ravished country could sure use some time to think about their thankful list though. I guess everyone gets tired of the most recent migrants wanting the lifestyle of their new country to conform to their expectations? We do. So I am tired, not only because I am getting disturbed sleep again but I have to pick up where I left off as far as looking after Ray goes. It is not just doing all the housework, yardwork etc, but also knowing I am again full-time 24 hour caregiver to Ray, fighting for his right to care and all his other needs to be met . Medical appointments start again tomorrow with a visit to his local doctor, next week is his neurologist, then blood work etc. I sure got back into that fast, didn't I?

Ray had trouble with one of the therapists who always sounded like a cross school teacher and I don't think he ever really tried for her. The next time he had therapy he had another therapist he adored but by then he had lost a lot of ground and could not respond to her training as well as he would have liked to. Maybe tell Mike that he and his therapist are a team and the more they can match their aims the more progress he will get. If they can together teach his body the right way of walking it will make it so much safer. It is nothing personal when she pats the part she wants him to use, she is not chastising him but "talking" to his muscles. Walking is such a big deal in the world we live in that you want him to get back as much mobility as he can. Tell him repeatedly you know how hard it is for him and cheer him on. Ray and I went through it after each of the strokes AND when he broke his hip so I know what it is like. Sue.

Asha, I am sure you will love being a Granma and be a good one. I like your enthusiasm for the joys of parenthood. To me one of the loveliest sounds is that impatient cry:"Granma where are you?" as my little grand daughter runs through the house looking for me. It is a privilege as you find with your kido, to be a part of their life. I am imagining you in twenty years time being regarded by a small person as the wisest woman in the world and the best grandmaother a child could wish for. Sue.

"Frustration of not being more independant is getting to me" Ken, this was Ray for the first 18 months or so after his major strokes, then he had another one, maybe caused by the frustration and anxiety. He rebuilt so much only to lose it again. So go easy on yourself. It is slow to recover from a stroke. Muscles rebuild slowly, attitudes change slowly, acceptance of the way things are going to be now and into the future comes slowly. There is no rushing it. We live the best life we can given Ray's limitations and particularly his energy levels. We are going to sell a lot of tickets in the Lions Club Christmas stocking in our local shopping centre between now and Christmas. That is our way of working now, doing something for the community. Cheers mate, Sue.

I can't believe how quiet it is, the cars are gone from the driveway, the fold-down bed is packed away, the sides are cleared of bottles, plasticware and food. The family have gone home. It has been a wonderful family weekend. This is one of the last times our Sydney family will be here for any length of time, they came up to do the service at their old "home corps" this morning. They came up yesterday afternoon and we all had a BBQ dinner together early and then talked until late. The little ones were good, estatic to be together again. They raced around the place and drove each other into that state of over-excitement that results in tears and tantrums at bedtime. The two brothers, the sister, the in-laws ate and talked, ate and talked. They were all so happy to be together. I think we are all so aware that this close proximity with Shirley and family is coming to an end as they are now going to Cairns the first week in January, and over the Christmas period time flies apace. This morning even the unchurchy Trevor went to be a support group down the front as Shirley did the service and Craig gave the sermon. My theologically trained brain did pick something here and there that could have been improved but they are still in the "learners' class" and will improve with experience. I am not a "stage Mum" but would have prayed that something liike this would happen. And despite everything that has gone wrong in our lives it was worth coming to this day. And who can resist a Salvation Army band "oompa-paaing" with all it's might on a bright Sunday morning? Ray was home which meant an extra load on me, but it was good to to enfold him back into the family again. He was quieter but followed all three of his older grandchildren's every move and was constantly remarking on how Alex, the baby, has grown. He is a proud Granpa, just doesn't have the words to express his love for them these days. And I am sure he is as loving towards them as he ever was. The three younger grandchildren ended up in the Crying Room this morning, mainly to have a snooze (Alex) and play with the toys (Naomi and Tori) Christopher remained attached to the uncles he loves so much.I took my turn with trips to the toilets, to get a drink for one of them, a hanky for one of the others. That is what Granmas are for. And it is a delight to be able to do it too. This afternoon after lunch we packed our gifts to them, much needed kitchenware, a "new" dinner set we had bought and never used, glassware, even some Tupperware, all will help to set them up to provide the hospitality expected of them as leaders of the new community they are going to. And it is nice to think of them eating off the plates and drinking from the glasses we have been able to provide. It is more blessed sometimes to give than to receive. And now they are all gone, back home, back to work tomorrow. But what a joy it was to have them with us. We will be back together for their commisioning in a fortnight's time when they will become Captain Shirley and Captain Craig. And then we will spend some time together around Christmas and then who knows when? I like to think sometimes my glass is not just half full, it is running over, and this weekend has certainly been one of those times.

Ray never wanted to see anyone in the medical profession pre-stroke. Now he knows that if he has symptoms of any kind that would not be part of what a person his age should experience then he agrees it is okay to see a doctor. I'd also try the approach:"I am having trouble with all this, could you come with me to a ..." whatever is the appropriate professional in your opinion. When I don't tell Ray something is his fault but tell him I have a problem he will often agree to taking some action. There are so many personality changes after stroke, and so many changes in our life circumstances that it it no wonder we all struggle trying to find a new normal. It is hard too to comply with what everyone else thinks is normal under the circumstances. Sue. :friends:

Yep, I'm alive too. Sitting here after mid-night, enjoying being back on the site. I copped all three trojans and my son spent this morning getting my computer up and running again. I saw the birthday photo in the gallery and must say you all look very happy in the photo. Hubby looks a little embarrassed holding his balloons though. Keep on blogging and providing us with a window into your world. Virtual hugs coming your way as you recover from your cold. :friends: :friends: Sue. :happybday: to hubby.

Mel, I read here and I remember when I was a government worker how often I disagreed with the policy that I was telling people about. I worked for Social Security and could see how budget cuts etc took away the little extras that made people feel secure. After all they paid heaps of tax as young people to ensure the system would still be there when they needed it and often policy changes had limited the benefits they were now entitled to. I guess we never know to what extent government changes and government policies influence the world in which we live. Thanks for giving us this insight into what Heath feels and thinks about the situation he is in right now. Sue.

If you've got no further use for that rain, parcel it up, address it to "Central Coast, NSW, Australia" and send it my way! :hahaha: I am havng a lovely break but next week the fun of caregiving will start all over again. And the run-up to Christmas, our busiest time, is just ahead. :juggle: Live one day-at-a-time eh? Sue. :friends:

Should have been 22 wonderful women. A casual friend of mine was booked to be there, she is a stroke survivor, but her husband had a slight heart attack a couple of days before (separation anxiety as she is his mainstay) and so she was unable to go. Funny how in some relationships the one who appears strong is actually leaning on the one who appears weak. I am still smiling happily so the weekend must have done me some good. :chat: Sue.

Mary, thank you for this blog. I did a Lifeline course many years ago and one thing I always remember is the saying "Keep your dreams current." followed by instructions on doing some of what you want now and doing the rest as you go along. So if you want to travel to France and can't you can go to a French restaurant instead. Keeping up appearances is never as good as sharing the truth with good friends. So continue to blog, and share the little ups and downs to encourage and strengthen others who are on the same journey. Sue. :friends:

Dorrie so sorry to hear about your Mum. As you know Ray and I have had many set-backs in the seven years I have been caring for him and I know how this feels. It is back to taking one day at a time, doing the research (what is causing the seizures?) making plans, getting help into place. So sorry it has happened just as you were finally confident that living on her own would work for her. Sue. :friends:

Bonnie's suggestion is a good one. The rehab centre may also provide some counselling if requested. The staff at Ray's rehab centre were wonderful and he also learned a lot from the other patients and their visitors as I did. If you could go to a local rehab centre and have a discussion with some of the staff that may also give you some ideas. For your long distance relationship I think the most important thing is to just keep your thinking current, know where he is up to and what he is thinking about today. Ask him how any information you can get for him can help him. Thinking about Ray's time in rehab I also kept a visitors record, recorded physio, speech exercises, even sometimes what he had said about the meals he had had so I could use them as the basis for menus when he came home. It is such a steep learning curve sometimes because the survivor and caregiver is bombarded with information and not all of it makes sense. There is hope for you both I am sure and just keeping him encouraged, with the knowledge that he is loved, will make such a difference to his recovery. Sue.

During the weekend away there were many discussions. My room mate was a marriage celebrant but had formerly had a job which included counselling. She is a widely read woman and produced our wedding skit. At the end of the weekend she also produced a two page document for us to take home. It is to help us look at our relationships. I with many others here have a great deal of angst about the changing roles of relationships in our life post-strokes. This can apply equally to those who have had the strokes and those who care for them, and to a lesser extent to family and friends. When someone has a traumatic event in their lives relationships change. In some cases different people start to emerge as friends, old friendships break down, even marriages that seem rock solid can break down. Diane's theory didn't address this issue but explained relationships in an interesting way. Working on concentric circles she classified the outer circle as strangers, those people we meet but briefly, say hello to, or a few sentences more and they leave our lives. We have these momentary meetings every day, in the shops, in the office, at the doctors. You can't go through life without them unless you are a recluse and just get your needs pushed through a slot in the door. Then comes acquaintances, these can be from a brief period of encounter or someone you see regularly but never seek to have a friendship with. I see the lady in the greengrocers once a week, I have seen her for maybe four or five years, I know her name is Fay, she has a sick mother, a son who gives her some worries etc. I have a similar relationship with my lawn mowing man, some of my neighbours, even some of my relatives, they have never become more than just someone I meet occassionally for a brief exchange. Next comes casual friends. These may also be colleagues, someone we see on a regular basis like fellow travellers on our transport route, someone we know quite a bit about, who we like and keep in contact with yet have never made them into a close personal friend, these can include our golf partners, other school mothers, closer neighbours etc. No-one knows why these perfectly lovely folk haven't come into our inner circle but for some reason they haven't. We usually have heaps of them. Next comes family and close friends. These are the people we can usually rely on. They form the foundation of our world, they are usually our parents and grandparents ( or grandchildren), our children,siblings, uncles and aunts, cousins etc. They may include old school friends, next door neighbours, people from among our colleagues who we now confide in and value as a friend, someone from a club we belong to that we now bring home on a regular basis, people we ring more than twice a week. Some people can juggle a few friends and a large family but most of us can't and keep that inner circle small. People who think they have a huge number of friends may be mistaking casual friends for close friends or lumping them all in together. Now she put Lover/Soul mate. I don't think I want to elaborate on that one. But some of you have a person that fills that role. Then comes Spouse. For some of us didn't marry the lover/soulmate but someone else. According to some traditions this is the accepted order. The spouse has a different role in the scheme of things. Then the centre of the circles is Ourself. Now her theory to right relationships is that people can move in and out of these circles. That slight acquaintance may be your future best friend, that best friend might move away and turn into a casual friend.People important in one part of our lives may later again seem just acquaintances. One the exercises we had to do was to think of ten names and put them in the right places on the circles, then add another ten and so on. The result can be astounding as with one's first thought they can obviously fit in one place but on further thought seemed to fit better somewhere else. So when a life changing event like a stroke happens we need to sit down and redefine each person's place in the circles. Our former best friend might not want to see us in pain, suffering, despair, ill health or whatever we are going through now. But *X* a casual friend from work, or golf or church, may step forward and become part of the inner circle, an encourager, a friend in need, a person of such strength and compassion that they become a true friend. What I have written here is only a rough outline of what she had written. I hope it is enough to whet your appetite and help you to look at the changing relationships in your life with renewed interest. It is okay to redefine who people are to you but remember you might be changing in their view too. A person we value as a true friend might see us as a mere acquaintance or vice versa. Life is not always going to make perfect sense as we all know. But anyway I hope this has given you food for thought.

I have not long got back from my WAGS Womens Weekend Away where I spent the weekend with 20 wonderful women, 21 there counting me. It was at a motel complex just down from where my son lives. I thought it would not be very glamourous but instead it was marvellous. Once inside the resort area there were green lawns and pergolas and a pool and little balconies with golden cane palms and for almost the middle of a small city it could have been deep in the country. The rooms were adequate, we were all "twinned" so many stayed up talking well into the wee small hours. The meals were very good, and we were so nicely waited on, all paid for and no tipping please, so apart from drinks from the bar no money needed on site. The organisers had asked us all to bring a bottle and munchies so both afternoons from 5pm - 7pm we had "Happy Hour" with nibblies and drinks. I think this was when I learned a lot about the other participants as they talked freely about their lives, their families and their circumstances. Support was asked for and given but not in a superior way but rather like we do it here when we ask in our postings: "My survivor is doing this, has anyone else had any experience with this?"or "I am feeling this and this, is that normal?" More than a few tears were shed during these sessions but the two or three "clowns" in the group soon had us laughing and in a good mood again. The company was fantastic. When I was told it was a mixture of caregivers and stroke survivors I was a bit unsure of what we would all talk about. Well mainly we talked about the problems of being women in a world that had suddenly changed. The range of deficits was wide from those who had had slight strokes ( or cared for someone who had) to one lady who brightened our life with her constant witty remarks yet needed a lot of help and arrived in a wheelchair that various volunteers pushed her round in. The women with slight deficits told how they faced everyday the question: "Now you are back to normal why do you still go on about having had a stroke?" and "When will you be going back to work now you are back to normal?" and the answers that I have become familiar with here, because of fatigue, memory problems, I can't drive, I can't stay awake long enough etc. The caregivers to those with medium to severe deficits expressed the nature of their lives now, the limitations, the financial strain, the lack of community support, the fear of a poverty-ridden old age. I told some of them about this site and how it had helped me through the rough patches by knowing I was not alone, by being able to come to chat and find someone else who was struggling with the same problems as I am. I also expressed the benefits I have found with blogging, that I can keep an online diary where I can put into words how I feel, and how by looking back on what I have written after the passing of time I find I learn from that. I also mentioned how supportive you all are to me here. All the women seemed to express in some form the loss of friendships, close family ties, their career opportunities , loss of future expectations etc and how they were coming to terms with that. The tears flowed then to as some expressed for the first time in a safe setting how they really felt as opposed to what they usually said:"I'm fine thank you." We also talked about the changes in lifestyle necessitated by the strokes. Some were themselves aware of their own prejudices towards those with a more severe/less severe form of stoke to themselves and said that being together in a group such as this enabled them to see things from another's point of view. And just in case you thought this was all gloom and doom and not much fun, you should have been there for the "mock wedding" on Friday night which was three hours of hilarity, the massages on Saturday morning, the "water ballet" on Saturday afternoon, the wine and champagne parties and the fun at mealtimes. There was also the "real wedding" we were able to see as that was booked at the same site but in another accommodation block but took place in "our" garden. Thank goodness the bride and groom, both second -time-arounders, were good natured and amused by our enthusiasm for the event and happy for us to stay and watch. If you ever get an opportunity to go away with a group of stroke survivors and caregivers you may not have as much fun as I did this weekend, but at least give it a try. All similar learning experiences stretch us as people, enable us to see into another's life and benefit from that, and help to build friendships that given the right environment could last a lifetime.

Hey Mel, I just had a look at the photo in the gallery. There is a large rock on the other side of the road from Heath so I presume it was a similar one to that that the vehicle hit. In Australia we call them "gibbers" (pronounced with a soft "g" as in girl). The phrase "done in by a gibber" would be a suitable caption to this photo. I won't buy into the political debate, that is for you US citizens to work out as part of your democratic process. I do hope that when the conflict finally ends and the troops come home it is nothing like the homecoming for the Vietnam Veterans, that was a real case of blaming the wrong people for the war and the resulting chaos. Sue.

Karen I believe what you have posted up to the event of marriage. That is because I do believe that "the two shall become one flesh" as it said in my marriage ceremony. So Ray and I are one, so what happens to him, happens to me, or to a part of me. Therefor what I do also becomes of importance from the aspect of how it affects him. Our lives will be what WE make them together. So I do not believe that "you are your one and only boss" applies here. I don't wait for others to make me happy, nor do I expect to have to make others happy, but I do expect that I will uphold my side of the marriage vows even if Ray is unable to uphold his. To me our partnership is maybe 80/20 now but that doesn't matter as long as together we make up the 100%. Now how do I turn what I believe into what I do every day? Hey! this is so easy to say, so hard to do. Sue.

Tess, the closest I can get to telling you what your presence and the sound of your voice means to your Dad is the example of a friend of mine who was put into a coma when she had viral meningitis. When she came out of the coma her family asked her what she remembered. She said: the sound of the sea (possibly the machinery around her) the feeling of sunlight on her skin( they wrapped her in warmed blankets if she got cold) and the sound of the voices of the people she loved around her. I know it is hard to speak to someone who does not answer, but maybe you could think of it like the "news" you used to do in class when you were in infants school. You could compose the news of the week under a few headings and tell them to your Dad a few sentences at a time. Each time you finish an item of news, squeeze his hand,he may surprise you and squeeze back one day. As Jean said, it may surprise you when he comes out of the coma how much he remembers. In the meantime remember to support your grandparents who are going through such a frightening experience themselves. Give them the warmth of your love and your hugs. Hugs for you from Sue. :friends:

Heather, what you are describing sounds suspiciously like acceptance and the beginning of a new normal. I guess you finally got some of those negative feelings out and that helped. For me as a caregiver there are housework days and friend days and it all seems to get done in the end. I think it is not worrying about it that is important so much as doing those things that give you peace of mind and something closer to the life you want to live. Sue. :friends:

Having time to yourself is a bad idea for me. Because I start to think about all sorts of things. When Ray is here I am too busy to think and so I just live minute-to-minute, day-to-day as all full-time caregivers do. I am including here all who caregive someone who lives with them and sometimes lives close by as a good friend cares for her mum and lives with her husband and runs two households instead of one, that woman NEVER sleeps. I was talking to a friend on the phone last night and she is running her husband's business for a week while he is away fishing. This is his reward for letting her go to Scotland alone earlier in the year to visit her grandchildren. They couldn't afford for both of them to go so just she went. There are a lot of trade-offs like that in marriage. We were talking about landing in Heathrow and I immediately thought how much I would like to travel but can't "because Ray has had strokes". See? Everything comes back to that , doesn't it? Ray has had strokes so poor me can't do any of the things I want to do! It is so simple to blame it all on "the stroke". My house is untidy because I look after a person who has had a stroke. My furniture is old because... My health is declining because....My clothes are old and daggy because... Hang on here, where is MY responsibility in all of this? Everyone has 24 hour days and everyone, to a certain extent, governs how they use it. A person caring for a stroke survivor just has to be more careful with their time to allow for some of the other events to take place. As a full-time caregiver I need to put time management skills into practice. I need to have a look at my life and see where I can take advantage of the time I have to do some of the things I want to do. For instance I complain that I never go to the movies. But since the place that hired the movies in my local shopping centre moved and I have to drive another ten minutes to get movies I don't rent movies either. This is not about the stroke, this is about ME. I could plan that into my shopping trip, pick up movies, do the shopping. Not that hard to do. And I need to practice trade-offs. I could get the son who drops his daughter off to have a visit with Granma to pick up my fruit and vegs while he is on the way back to pick her up as he drives past the shop I usually use. It is a matter of putting some of the ideas I used to use when I worked outside the home into fixing up some of the wasted experiences here. And like Sarah (space1) maybe I can barter some of the things I have for some of the things I need. I just have to have time to think about it. I can think this way when I have time to myself but can't think at all when most of my activities are governed by knee-jerk reactions to the current crisis. Mostly I just don't have time to sit down and sort things out. By the end of this week I need to have not a "to do" list but a list of how to do things better.

Ken, that gathering of family re-enforces your worth as a person. I just love get-togethers where Ray is still treated as an equal and a person who belongs. They don't happen a lot but we just got an invitation to a cousins' gathering just before Christmas and that put a smile on his face. I was just looking at Sarah Snow's post on get togethers, maybe one day we could get together with you and Craig G from the Blue Mountains as we are the nearest NSW members? Sue.

You have a lot of my favourites on here too. I watch them when I am having a "blue day". Though why "Steel Magnolias" would cheer me up is a mystery except it says "life goes on anyway" to me. I am enjoying this movie list blogging. May attempt one of my own when I have more time to think about it. Sue.

I'm with Phylls, just report it. Though our son has the best approach. He is a big lad and once approached a young able bodied person and asked him:"Are you disabled mate?" The person replied "NO" . "Well you're parked in a disabled parking space." "SO?" "Then I could break both your legs if you like, that should do the trick." The person went back to their car and moved it. Glad you and Bill are enjoying the time you have with his mind lucid. Enjoy the lead up to Christmas and do all the extravagant girly things for a change. Put Nurse Annie's hat away and wear the red one with the ostrich feathers. We all need to do that from time to time. Sue.