swilkinson

Another milestone for Ray, he swung his legs around by himself yesterday so he was sitting on the side of the bed. He can't stand up from that position yet but now only needs the aid of one nurse who uses the full arm high walker to transfer him to the wheelchair. It is baby steps, just like the original stroke. I took him in the wheelchair out the back in the little courtyard yesterday. The sunshade is enough to filter out the heat and still make it feel as if you are outside. You can even hear the birds singing! He also got moved further way from the nurses station so that is a sign of increasing confidence too. Still no results of the last couple of tests but from a "wife view" I think he is much better now he is off the pain killers and more like his old self. Sue.

This morning I woke up, got out of bed, dressed and had breakfast. It wasn't until I got to put the toast in that I realized how rare this is. I did it all in my own timing. When Ray is here I wake up early, do some preparation and come onto Strokenet. That is because I can actually see him from where I sit as there is a connecting door which I keep open a crack. That way I can go in and help Ray up and out of bed if he needs it. So as soon as I wake up I am thinking about Ray. That is my focus for each waking hour. It is over three weeks now since he had the fall and went to hospital. The first two weeks I was so busy worrying and waiting on this test and that test to see what the doctors were going to do that I hardly had time or a thought to myself. I just kept running. The work at home, the visits to Mum etc were all squeezed in around the running in and out to the hospital. Those of you that have been on the medical merry-go-round a long time will know that lot of a caregivers time is taken up by thinking ahead. I usually get up reciting: "Today is Monday. Monday is Daycare. Daycare means Ray has to have clean clothes." I then go to the wardrobe and sort out a clean outfit. I put the belt in the trousers, put the clothes down in the order in which Ray puts them on and then wake him up. Get him up, get him breakfast. Remind him to have a shave. Help comb his hair. Get him on the verandah. Listen out for his transport as I do other things. Tuesdays is a easy morning so I don't wake him up as early, I do some chores and then wake him. In the afternoon we go to craft. Ray enjoys the afternoon tea but I think he also enjoys the happy chat in the background. He reads a book, or pretends to and lets it wash all around him. The old ladies love him, you can tell by how often they pass the cake plate to him!! Wednesdays is our day at home. This is because when we are in summer I am on the computer chatting to some of you from mid-day on. So I check everything out in the morning in case someone has a new crisis I need to know about, then spend 12noon - about 2pm in the Caregiver chat room. My time there depends on who is in and how late some people get in. It is a good time for me, I do enjoy the chats, particularly when that party mood surfaces and we all get a little silly. I like to think of people leaving feeling happier because they came in. Thursday is shopping day so we get up early, Ray gets a change of clothes then too as I think he looks better if he is clean and shiny. He doesn't always want to shave but I like him to when we go out. I guess most of us want to look our best, he doesn't care about his appearance, but I do. I want him to look at his best. Ray, because he doesn't get out in the sun much and tan up like he used to do, can look pale, and a lot older than his years too. So clean shaven and shiny is my preferred look for him. Friday is Scallywags, pick up time just before lunch, so he gets to sit on the verandah in the morning. I get to do my own thing in the afternoon until he is back at 2.30pm. It is only three hours but I can shop for the pleasure of it , or visit a friend, have some coffee at a cafe, do some of the things middle aged women do. It is good to have the feeling of being free to do what you want. The weekend varies, some involvement with the kids or grandkids, sometimes a drive, church on Sundays. It is a simple life but I mostly like it. Then there is Lions Club dinners twice a month and then another couple of associations we belong to have meetings too so there are other outside activities that we have that broaden our approach to the world. And the friends who phone and the family dropping by make the bright spots in the week. Especially those little grandchildren, they are such a bonus. I am writing this now but in the back of my mind a little voice tells me that all this is in the past. Will Ray be able to come back home and resume life as it was when he left, or will he have extra disabilities and not be able to function at Daycare and Scallywags on his own or manage the dinners out? These are questions that only time will address. In the meantime I will enjoy just getting up of a morning.

Hello again, nice to have you back. I'll look forward to having you come in to chat. :chat: We have all changed a bit, read the blogs to catch up on the news. :welcome: Your old blog was called MargaretMary's blog so you can have a look at it and might want to copy some of the information into your new blog as an introduction. Of course someone cleverer than me might know how to join the two together if you want to. Sue. :cheer:

Jean, I agree. There are lots of factors in every situation and all we can do is our best. But there are people who will judge us regardless and that is all I was pointing out here. I think that society also overlooks the effort involved in caregiving and as thanks and praise don't come my way regularly from family and friends I would have to think that our efforts are largely ignored or under appreciated. Sue.

Lucy, this is the real world, bills do keep appearing out of nowhere and in my case they are always more than I thought. But 10 cents over at the end of the week and you've made it. I am glad you are feeling able to take your life back again. Way to go!! :cheer: :cheer: :cheer: Sue. :chat:

Fred, I went to a meeting today and was told of the death of a fellow stroke survivor known to Ray. The lady said:"He died of a broken heart." Seems he and his wife/caregiver quarrelled and she left and he couldn't go on living without her. Sometimes it is a hard decision to stay or to go. But where would I want to be if I was in Ray's shoes? Right here at home. I guess that makes the decision an easy one for me. And love overcomes a lot of problems. Keep on encouraging those survivors and veterans you meet to look at the possibilities in life, not the impossibilities. Sue.

Three weeks today - where does the time go? I am visiting Ray mid-afternoon five out of seven days. I can be there from 1pm - 8pm but he needs to nap after his morning therapy. I get there about 2.30pm and am only staying a couple of hours per visit. He seems to be doing okay so far. But he has an endoscopy to look at his tummy yesterday, guess they are trying to find the reason for his anemia. Is there an organ they haven't x-rayed or taken pictures of? I should start a new album: "Ray from the inside out". Everyone is emphasising how S_L_O_W the healing will be so guess I just have to go on visiting and encouraging him until they say "Ok, he's all yours!". It will be the start to the next chapter when that happens I guess. Thanks for your concern. Sue.

It finally happened. Last night around 9.15 pm I got a phone call to say that Ray was in the Rehabilitation Unit that produced the miracles for him in 1999 after his major strokes. Then he spent three months there and went from being a stretcher case to walking out on a walking stick. I am hoping they can repeat the miracle and put him back on his feet again for me. It is 18 days since the fall that broke his pelvis and fractured his acetabulum ( left hip joint) and so far he has had very little practice walking apart from nurses taking him to the shower using a Full Arm High walker, two nurses and a gait belt the last coupe of days. Not an effort wasted but hardly walking on his own. So he has a long way to go but I am confident that the physiotherapists at the little rehab unit can do it. There are still some members of the staff that were there on his original stay and I am sure they will act as cheerleaders and help him to keep his spirits up. That is so important. This rehab unit was once part of a cottage hospital, now on the Central Coast we have a couple of mega hospitals , two large private hospitals and the little ones are used for geriatric nursing and this one for rehabilitation, mostly of amputees and stroke survivors. There is nowhere better than a little 18 room 4 to a bedroom unit like this to offer inspiration ("there are a lot here worse off than me"), dedication ("come on Ray, you can do it") and perspiration , well it is very hot in the gym with all that effort taking place! I am so glad he is there, now I can believe that he will soon be walking well enough to come home. By the way, thank you for the sixteen or so people who came to chat Tuesday night. The banner announcing chat sure helped to swell the crowd. I did so enjoy your company and towards the end a real party mood took over. It really lightens my spirits to join in a lot of fun and nonsense and know that behind it are some people with really big hearts offering each other support and encouragement. Good on you people, you ROCK!! I hope the last one out switched off the lights and secured the premises? The drive over took me 45 minutes as I got to the school safety zones just after 2.30pm, the starting time. I will have to organise myself better in the future. The journey back took me 35 minutes and my heart was much lighter by then. I am going to approach a few of my older friends as see if they would like to come over with me to keep me company. A lot of them like a drive and it is a very pretty drive, if somewhat long compared with the other driving I do. I know a lot of the caregivers here will relate to that. I know it is only for three or four weeks so I will just do it without complaint ( or maybe an occassional vent!). All the family and friends will soon know he is there and hopefully some will visit. There was a fellow Lion and his wife talking to Ray when I got there. He is our Tail Twister a man given to telling tall tales in order to extract money from us. His opening remark to me is always:"Got anything on Ray for me I could use to fine him tonight?" As a man descended from Irish stock he has a real gift of story telling and tells a joke that can make you laugh without really knowing why. It was good to see Ray smiling and happy after their visit. Like a lot of others we have lost friends and contact with relatives etc due to the ravages of the stoke but some friends have stood by us and I thank God for them all. And for those here who encourage and inspire me so much. I finally feel as if there is a chance that Ray will recover now, that he will walk and be able to come back home again. It is comforting to have the dreams I have stored dusted off and out on display again. Maybe...too early to say I know. But at least I have some hope in my heart again.

Ray broke his pelvis and cracked his acetabulum (hip jont) on the left side, his stoke affected side, on 13th January. He is a case of "move it or lose it" as he has osteoporosis caused by inactivity on the left hand side. Of course he has had five strokes too so his deficits have built up with each stroke. Like Bill he has lack of motivation and can see no point in exercising except when the therapist is right by his side. Encouragement can only do so much and although at times he has agreed to do some exercises with me or one of his sons his heart is not in it. Ray has just been transferred to a Rehabilitation Unit where all therapies are on a daily basis and I hope against hope that he will respond to the treatment there and walk back into his home once more. My experience of therapy as a whole has been good, but sadly a stubborn survivor who won't continue the exercises at home may have to consider what could result from that like osteoporosis,falls and further erosion of their freedom. As for accepting what is happening I think that is a day-to-day thing. Sometimes I can accept what has happened to Ray and consequently to me and sometimes I struggle with that. Sue.

This is a great statement. I think though that the ups are great for the planning stages but the downs tend to throw me back to the tiny space I can cope with. Welcome to the blog community. Blogs can help us understand others and also "spread the wisdom" like you have just done in yours. Hope to see more of them. Sue. :chat:

Betty Jean, Ray and I will be 39 years married this year too. Since his major strokes in 1999 he has been emotionally shut down too and I too miss him saying "I love you" without prompting. I think it is a deficit from the strokes. I take his hand and stroke his face too. I am the one who has the "need" so I have to go through the motions. It is hard for me to see couples waking hand-in-hand or dancing cheek-to-cheek but I am able to do it without crying now unlike the first couple of years after his stroke when I found it so hard. I also think back to the times pre-stroke when he would bring home a bunch of flowers for an anniversary or a present for my birthday. :wub2: Now I buy a small present and say:"Look what you bought me, just what I wanted!" and he grins. We have lost so much but at least we still have them as a companion and have to be content with that. Sue. :chat:

There is a light at the end of the tunnel, at the moment it is just a tiny pinprick of light but it is there. Ray is "walking" with the help of two nurses, a gait belt and what is called a "full arm high walker". He walked to the shower and back yesterday ( about a dozen steps each way) and today walked out to the nurses desk and back ( about twenty steps each way). His pain level the nurses now describe as "manageable with mild pain killers" so no more morphine.Yeah!! I have had some easier days too. I went out to dinner with friends on Thursday night. On Friday as well as visiting Ray I got some housework done before the visit and some shopping on the way home. Yesterday (Saturday) I had some time at home, went to see my mother and on my return did some gardening until I got too hot. Then I watched the "Da Vinci Code" which my son got for me on DVD and then we had a chinese meal. At last, some "ME" time! Today I went to church and had some time to talk to some of the craft group ladies, they were discussing a luncheon to be held in February with a Valentine's Day theme, must have been on last year too. I missed it last year as it was late March that our old church closed and we joined this one. At last I feel only a little regret about the closing of my old church last year. It is no longer as painful a memory as it was, that real heartache is over. I am starting to feel "at home" at our present church now. Time is a marvellous healer. This afternoon, after my visit to Ray I went to our older son's place and had afternoon tea, some playtime with the two grandchildren and then stayed for a BBQ dinner. It was absolutely lovely on their back deck and it was a lovely relaxing time. I know they are busy so it was nice they made some time especially for me. Ray had a cousin and her husband visit this afternoon too, they have his father in a nursing home now, at the age of 89 he has "gone in the legs" so under protest he went where he could get the help he needed. So they understand hospital visiting etc and seems quite happy to visit and talk for a while. It has been a long two weeks, the first two weeks of Ray's hospital stay, the last two weeks of January. I don't know how many more weeks Ray will be in hospital. I am guessing that if the physiotherapist works closely with him this week he may be home by next weekend. I feel like crossing all my fingers and toes but then I would be the one to fall flat on my face...lol. I feel as if the world is slowly righting itself again. It is always like this with every new crisis. I had a phone call from an old friend who's husband sometimes plays the organ at one of the larger Catholic Cathedrals on the outskirts of Sydney. She assured me that Ray would be prayed for during their Mass this morning. I know he is being prayed for in our church, my daughter and son-in-laws Salvation Army Corps in North Queensland are also praying for him and I know people on this site are too. I am sure he will be uplifted by all of this. And want to assure others that this is all a part of his healing and this sharing in the journey certainly helps my peace of mind too. Now all they have to do at the hospital is get Ray fully mobile so he can come home again.

Ken, glad to hear your check up results were so good. Keep up the exercises etc and you will be more independent. Though Ray had his fall on a good flat surface so be careful! Glad to hear your memory is coming back too. It is one thing I really miss as Ray loses his with the dementia that I can't say :"Was our Adelaide holiday '86 or '87." It is so frustrating not to be able to rely on the superb memory he used to have. Sue.

Today Ray stood up for the first time in eleven days. He still can't take steps, the physio tried but he sagged at the knees and the physio called the nurse to pull the chair forward as he was holding all of Ray's weight on the gait belt. It was sad to see that despite a pain tablet half an hour before Ray was still in a great deal of pain. Even just standing up he was doing what he himself calls:"Waving in the wind." The orthopedic team, apparently four of them, decided that the hip socket fracture was only minor, the hip was fit for weight-bearing and the rehabilitation, that is the physiotherapy should be started. I am all in favour of that as Ray had been laying down most days and sitting in the chair for brief periods other days. There is still some uncertainty about where he will go from the hospital when he is no longer regarded as acute care. The choices are two smaller hospitals, mostly used for convalescence or for nursing home patients awaiting placement. They do have some physio and that is good but it is not an intentional program, just to keep people on their feet. I am worried that will not address all of Ray's stroke related issues and return him to full fitness again. That is what he needs to come back home to live. Ray was inspired by his stand-up and after the physio had shown him some sitting down exercises he could do to strengthen his now very weak muscles he started them on his own. Not the way the physio had shown him but in his own way. Ray always finds a way of doing things, this meant he seized the bad knee with the good hand with a grip on the band holding the AFO on and moved the leg up and down this way. I guess at least he felt as if he was doing something. He is also refusing the cookies that the good natured catering department leaves at every bedside. It is not shown now that a person is a diabetic ( breach of privacy?) so they leave them for everyone. This and getting dessert at two meals a day has been shooting his sugar readings sky high so I am glad he has made this decision himself. At least at hospital I don't have to be the "food police". It seems there are decisions to be made every step of the way in this recovery process. Today I have to decide who to ring with updated information. It is okay here and on my email list as a post, blog or email will solve the problem. But then there are the many friends and relatives on phone only that I have to sit down and ring. I think I will ring a few people every night rather than tackle them all at once. I am hoping the news will improve as we go along.

The end of week one of Ray's hospital stay saw very little progress made. He had eight xrays and scans of various kinds to get a diagnosis. The hip joint on the left side, where he already has the hip pinned is cracked across. I guess that means an operation but so far no-one has said they will do it. The orthopaedic specialists will consult tomorrow and I hope one brave one will agree to do the operation. If Ray cannot have the operation we look at the worse case scenario: Ray spending the rest of his life laying in a bed in a nursing home. Of course if by a miracle he can eventually stand without pain and even take a few small steps I will bring him home. I will not put him in a nursing home unless it is impossible for me to manage him here. We have got to the stage where friends are rallying round. Some phone calls and a few hospital visitors from Thursday onward started to show us that we are not alone in all of this. The messages from cyberfriends here are much appreciated. Each day I go in to see Ray and say X,Y and Z called and send their best wishes, A,B and C left emails, friends from Strokenet say "hi". Of course a lot of people want to know if there is anything they can do and with the exception of prayers and good wishes there isn't, but it does help to know that others are thinking of us in this time of struggle. Further down the track I will need people to sit with Ray, maybe pick up groceries or prescriptions or other needs so then I will ask for them to do something specific. In the meantime I tell them visits are much appreciated. I went out to lunch at our son's place yesterday. I told my daughter-in-law I could only stay an hour or so but three hours went by before I went back to the hospital. Today I went in to visit after going to church and then my sister and her husband came and we came back here for a late lunch. It all helps, both to have someone to discuss things with and also to have the distraction. My sister tells silly jokes with facial expressions and actions and today she managed to make Ray laugh. That alone was worth the visit. I guess there is a situation now that sounds more serious than some of the ups and downs we have had in the past and people do realise that this is a crisis where their support is needed. I hope the prayers etc continue as I am sure this is the beginning of what will be a trying period for us. For those of you who were fortunate enough to recover from stroke with a minimum hospital stay and a convalescence at home it must be discouraging to hear of the ups and downs some other survivors and their caregivers have experienced. But that is life. No two strokes the same, everyone recovers at their own pace. And the surviving the experience is what counts. This period of time we'll get through - with a little help from our friends.

Kim, I felt like this last year and then Ray's doctor changed some of his medications, Ray had some more physiotherapy and he seemed to come good again. I'd certainly check with Chris's doctor about the headaches, particularly if he seems to be having adverse changes in his behaviour and general well-being, Ray is just starting vitamin b12 shots and iron as he is anemic and deficient according to the hospital blood work. I know how it feels when the "virus" strikes and there is additional washing to cope with as well. I'll be thinking of you both and praying things get better quickly. Sue.

Betty Jean, maybe you can do the same as I used to do with my teenaged sons. I used to talk to them before we went out about the level of manners they were to show, what was appropriate behaviour etc. When they started to clown around I would say:"Remember what we talked about?". Then if the horseplay continued I would excuse us and go outside and repeat the lecture. Mostly that was enough to settle them down. Maybe you could say in Jim's ear. "This is not the right thing Jim and will not help us get seen any faster. Please be quiet now." We know this impatience can be a part of stroke damage but it is not appropriate to express it loudly and certainly won't improve the service given to you both. But as Ann said, it could be stroke damage and out of his control. Sue.

Bonnie, Ray and I have been married 38 years now, so taking care of him is taking care of me. At the moment I am so worried. If they don't operate???? I guess going to the movies or out to dinner right now would seem like a frivolous past time. I really just need prayers and support while we are going through this now. Thanks for the hugs. It is great friends here are online support. Thanks a heap to all who read this and are concerned for Ray and for me. Sue.

I think this going in and out of hospital visiting Ray is one of the loneliest feelings I have experienced. It is like living in a capsule. It is like standing in the middle of a city and feeling as if you are an alien. People ring and say "what can I do?" and I say "add Ray to your prayers" or "keep in touch" but I really need them to come and hug me. I feel as if I should be standing by Ray's bed 24 hours a day so that when he can't get some word out or forgets what to do or what to say I can be there to supply what he needs. As his dementia gets worse we will have a mother/child relationship, it happened with Mum so I am prepared for it. It is not that someone else can't look after them, it is that you know them so well that they don't NEED anything , you are anticipating their needs. I know love is always pain, just in my normal , everyday life I can keep that pain at a minimum. I can show my love in what I do for Ray, day-by-day. Now I can only show it in being there, in my advocacy for him and looking after the house etc while he is gone. Many of you have been in this position so you know what I mean. Sue.

Asha you are so right. No-one wants to help a grumpy woman, so I will try not to be grumpy with the staff. Every time we have a downer like this it takes a lot out of me as a caregiver. I think it is because it is all so out of control and all you can do is wait until it all resolves itself. I have always been a "worst case scenario" person, it is how I forward plan and probably why what I do mostly works. I need to think"what is the worse thing that can happen? How can I handle that?" Thanks for all the feedback. I will think about the massage Sarah, the one I had at the womens weekend sure made a difference so maybe I do need one now to relax me more. Sue.

It seems like a fortnight since last Saturday and it is only five days. Ray is still in hospital, still in bed or on the chair beside the bed, still not walking or weight bearing. He is still undiagnosed as the xrays have been "inconclusive". So more tests have been ordered, still a bone density test to go. Today they had a second try at the nuclear scan but when I asked the nurse when we will get the results she replied: "Thursday afternoon, Friday morning, maybe." Seems it is all done by a private contractor who takes their own sweet time to get the results back to the hospital. How I hate this letting it all out to private tender with no responsibility to patients or management. No treatment till all the results come in and bedrest for a patient who is in a situation of "move it or lose it". Today when I left the hospital I was feeling really bad, the heat of the afternoon didn't help and then I was caught in a traffic jam caused by road works and so I called in to see an old friend. She was widowed two years ago and is a person who has cared for aged parents as well as her husband for five years prior to his death so she does know how all of this is affecting me. It is good to talk to people who really understand, isn't it? Ray is laying on the hospital bed watching the tennis, or flicking between channels and not a care in the world. Now he is getting cut-up food and easy to eat meals like mashed potato, pumpkin, sliced beans and casseroled steak the meal he had for lunch today so he is able to eat without assistance. He has plenty of nurses and aids to look after him, his meals arrive at the right time, he has clean clothes brought in by me every day, what is there to worry about? I think the impact of this new disability is lost on him, or maybe the pain killers are fixing the anxiety as well. So he just sits propped up by pillows with a happy smile on his face. I have cancelled all his outside activities until further notice and as people phone me to ask how he is I am asking for their prayers. Frankly I don't know what to pray for at this time. Healing for sure, I want him to be healed, healthy and pain free. Comfortable nights for him and for me is a given. And patience, I need loads of patience, to deal with staff who seem not to have a clue about the life of a stroke survivor and his caregiver. Maybe it is easier to just hand out the medications than to answer the questions. Maybe they are so used to things taking so much time that they are just content to wait? I am sick of waiting and yet I know this is just the beginning of the process. Depending on the results of the scan there will be surgery and rehab or just rehab. Depending on Ray's ability to follow instructions and co-operate with the therapists he will have some time learning to stand and walk again. This will be done in a pleasant setting he is already familiar with having been there a few times before and with it all tailored to his pace. Thankfully that will be the case and he will soon be walking well enough to come home. As the event was a fall and not a stroke this should not take as long as previous strokes. Unless of course there is extensive surgery to repair the pelvis. That would make a huge difference time wise. Whatever happens I know I have to contain my soul in patience. Not a easy thing for me to do.

Sending (((hugs))) your way too Kim. I am glad you came back and updated us but sorry the news was so sad. I too lost my Dad seven years ago, it is something that takes a long while to get over. Keep up the blogging, it does help to lay your thoughts down somewhere safe like here. And there are a lot of people here to support you and Chris too. :friends: Sue. :chat:

The older I get the more I like life to be uneventful. Sue.

Bob, it is a myth to think that the people around you are just fine and you are the only one in pain. In reality when you see a pregnant woman she is probably in pain too, from the weight of the baby, from stress, from medical conditions, and old ladies with canes might have bad athritis or sciatica and younger people might have a headache or heartache or some other medical condition. Most of us are struggling, survivor and caregiver alike. I keep picking up a wheelchair and picking up Ray off the floor, that gives me my lower back pain. But like you I smile and say:"I'm fine thanks, and you?" Sue.

Ah, to be young and so full of energy! :laughbounce: Sue.