swilkinson

Debbie falls are scary as you know neither the cause or the ultimate results. I woke up tonight because I kept seeing Ray fall in my dreams. It is a constant worry for me. But all is well that ends well. No Bruce like Ray will never acknowledge the effort the caregiver puts in. To Ray it is just what I should do. I'm glad Bruce was bruised but not hurt, be assured that many here understand what you are going through. Sue.

Lynn, every Mum has family worries so we are all in the same boat.I try to remember to say "This too will pass." We've got to remain calm. Having said that I guess I shouldn't be up at 20 minutes after midnight because I went to bed early, tried to sleep and couldn't...lol. Maybe I'll count sheep or something. Sue.

Ray was not accepted for the Transitional Care Unit as his progress is "too inconsistent" - well folks he has brain damage!!!. I guess it was an outside chance and I was willing to do it to get him home with more abilities. I know there is only so much money to put into these things and so they only take the "winners", those who will benefit most from the more intense physiotherapy etc. I am just sad that this time that was not Ray. So I have had a couple of interviews with the social worker, members of the team who have been looking after him and now discharge planning starts. I am disappointed with what has happened but Ray is and always has been since the 1999 strokes down as "unmotivated" so I wasn't surprised with the result. It is a "move it or lose it" world. I now have to acquire any new skills I need and the equipment to bring him home. I am promised more care but will see what the reality of that turns out to be. I am not happy with what has happened but as the care itself has been good and as it IS Ray's attitude that is the stumbling block here I guess I will have to accept the "things I cannot change”. I hate the "being in limbo" feeling. I visit every day for at least a couple of hours around noon, I still visit Mum, do the housework and the laundry, pay the bills, make phone calls and send emails to keep people updated. The days tend to have a sameness about them so sometimes I don’t know what day it is but even Ray remembered that today was our wedding anniversary (43 years!!!) so that was really nice. We have also had congratulations from some of the other patients (the sun room mob) and some staff members. I know some of my family consider this respite as I haven't had to do all the extra laundry etc that having Ray at home entails but for me respite is a time when I can get away and do my own thing and believe me this is nothing like that! We have had weeks of heavy rain so that has hampered the visiting and I have been his only visitor for many days in a row. Even Trevor hasn’t visited. Change is always a challenge for me and so I hark back to the days when…Ray could walk, wasn’t incontinent, did listen and respond and wasn’t 24 hour care. The older nurse who came by today with a whole heap of notes on incontinence aids and the one who came to help me establish where Ray is as far as night-time incontinence is concerned are both a blessing, representing that body of nurses who really were there to help you cope with what lies ahead as well as look after your loved one in their care. The good news is I may be entitled to some extras, like discounts off the pads I’ll need for Ray, deductions in the hiring of equipment and maybe some laundering if I need it. This is another disability scheme I can enroll in and one of the nurses is finding out about it for me. I will also enquire through our local pharmacy as they have another shop with a large equipment section so they might do discounting too. You have to save wherever you can and make one dollar go where two dollars would otherwise have to be spent. My Scottish ancestors would be so proud of me! I keep on going because I have some family support, a few of my old friends still keep up with us though there are many others who have fallen away. My faith and church friends who have me on their prayer list also give me confidence and my cyber friends here who also show love and concern and send up prayers for me do too It means such a lot to me, particularly on those bad black and blue mood days. So looking ahead, Ray comes home Monday 1st August and hopefully care team members start coming to provide the services he needs. At the end of that week is the wedding, on Saturday August 6th – I guess a big let-down comes right after that. Then a month more of winter and then Spring!!!!

Kelli and Patty, early in my married life we had one car and it was HIS and HIS alone and asking to go shopping etc was such a bind. It always seemed such a chore for him. So I do know what it is like to be without a car and dependent on someone else. So my suggestion is if anyone asks if there is anything you would like make taking you out for coffee or shopping a top priority. I am sure someone will ask and if not suggest to your closer friends that it would please you to be able to get out a bit more. Also make the most of any outdoor area, sit in the sun, drink a coffee, talk on the phone, just spending time outside drives that stir-crazy feeling away for me. Sue.

Jillian it sounds as if you have a long life stretching ahead of you now. There is so much potential in all of us so I hope you can live it to the full. Sue.

I so agree with you about the storm surges, yes, that is what an emergency feels like. I must say in the last few weeks with Ray's hospitalization I have felt that too. I am sorry your husband has had so much trouble with the stroke and now the heart damage. It is all so hard to understand, why someone should go through all this. I hope things start to change for the better and he recovers well. (((hugs))) from Sue.

Well done Dean, it is a challenge to get back to riding after a stroke but you were up to the challenge. From time to time we have had posts and blogs about bike riding so if you put that into search you might be surprised at how many people have found it a beneficial therapy and an enjoyable past-time. Sue.

For the last few days I have been trying to make some decisions about what is best for Ray. I have seen several social workers and looked at what he needs to come home etc. I have had a new toilet put into our bathroom and discussed with our son whether it would be feasible for him to move back in with his family so he could help with Ray. That would be a major shakeup for all of us, fitting five people into a very small three bedroom house. All in all I have done everything I thought I needed to do. Now I just need to relax and let whatever will happen, happen. I’ve noticed lately on here the cries for help often include the phrase “what will I do now?” The answer is often simple…wait. We all need to give our brain a chance to heal if we are a survivor, our minds a chance to sort things out if we are a caregiver. Some things you just can’t hurry. It is a bit like having a baby - about half way through we would like the process to be over, finished, the baby out, our lives back to normal. Ha! Ha! As if that is ever going to happen! So tonight I pledged once more to just look after Ray as best I can, no program, no schedules apart from those we have to make for medical appointments etc. We will just live out our lives one day at a time with him home in the home we share, the house he built. It is a lovely thought, whether it is a practical one or not remains to be seen and whether it can be lived out which is more to the point. Today I had an interview with the social worker to get the care lined up. She noted all of Ray’s conditions, past and present, his long battle with strokes and diabetes over the past twenty one years. She had a picture of Ray as he was, as he is now and then she interviewed him. Now the findings go to her boss who makes the final decision, she says I will hear from her by the end of next week. Ray is hopefully to go to the Transitional Care Unit and get some more intensive therapy. Isn’t it strange that so much of this is out of our control? One person decides this, another person decides that - doctors, specialists, social workers, therapists all have input into what happens. We always find ourselves on one waiting list after another. We have dates to stop and start physio, medical procedures scheduled, blood work due etc. Nothing we can do can alter the outcome and yet it is our life that it affects? In this case it is how Ray progresses that affects if I can care for him adequately or not. I wonder how we got on before so many other people were in charge of our lives? For me it is time to move ahead, getting things ready for Ray to come home. The present therapists tell me that I will not know what I need until Ray’s discharge, as we don’t know what he will get back. It is like after the 1999 strokes with other people doing what they can, me doing the waiting. The problem is that life has moved twelve years on since then and now it is ageing as well as diabetes, strokes AND dementia we are dealing with. Ray isn’t the fit young man he was when he had the 1999 strokes, nor am I that younger woman easily dealing with all the problems involved. Today I went to a funeral, the person was in their mid-70’s and died of cancer, he was whimsical, had a real sense of humor. The church was packed with people from a lot of different walks of life, which is how it should be. He had lived well. At the end of the funeral which was pretty solemn we walked out to Perry Como singing “Catch a Falling Star” I know the words as it was one of Mum’s favourites, she had that album of Perry Como’s and one of Dean Martin’s long playing albums as her cheer up music so we heard it frequently. The song finishes up with the words “save it for a rainy day” which seemed so appropriate with the rain falling down in bucket loads outside. Maybe I will make that Mum’s last song too. She really loved it. Mum’s room mate died this morning, the lady who had just had her 104th birthday on Monday. That is a long life. She had shingles recently and said she was finished with life and wanted to die. Mum had shingles 20 something years ago and said the same thing then, it is a painful disease. So next week I will have to go to another funeral as she was from our church too. I guess we lose a lot of our oldies in winter. It is a bit eerie being on my own for so long with Ray away. The wind is whistling around the house and the rain is falling down and it is all muddy and slushy and just the opposite of summer here. I wish you could send me another sunny day as I hate the gray, dull days of winter. I told you all when you were complaining in January that I would say the same thing in July. Thanks for listening to my sad sack stories the past few weeks. I know there is nothing anyone can do about all of this, as I said – it is a waiting game.

Ruth, having not reached this stage with Ray as yet I am not fully understanding the emotions but I can see how much difference it made for you. I wish you could find another care home more concerned with good hygiene for their residents and you knew he would always be clean and dry. I did have a friend who's adult son was in a really bad car accident and he was in care through the week and home Saturday morning till Sunday afternoon most weeks. As he was high care that was all they could manage but it worked for them. I am still hopeful Ray will come home for a while, he is finally looking like his old self again so they are going to try some rehabilitation at another centre. I hope it results in him being able to be mobile enough for me to handle at home. Always was an optimist. Sue.

Ruth as usual I am amazed by what you do for William. I am so glad he can still read. Ray has not been able to read for some time now. Keep us updated with what William is reading and how you go using the Nook for yourself too. Sue.

Debbie, the sleep issue worries me as Ray has had 14 hours of sleep a day here but in hospital they do not put him down for an afternoon nap. He does nod off a few times in the afternoon though. When he gets too much sleep he is not as alert as when he has less. I wonder if Bruce feels more depressed when his special visitor goes home and so out of boredom he sleeps and sulks and will not co-operate because he feels "what's the use, nothing special to do today"? I am sure that applies to Ray from time to time. Sue.

Asha, you have been truly blessed by the wise choice your parents made. I marvel at the way your stroke journey has been a big part of learning to appreciate who you are and who you are to others. I am glad this mariage has been the foundation of all of that. :hug: :hug: Sue.

This is a typical pattern after giving up the fast lane and taking to the slow lane. You had plans to do some work with dogs so maybe time to plan that. You can do that without leaving the house It is natural to miss your job and your former busyness and yes we all go through withdrawals for that too. I nearly went stir crazy when I first became a caregiver, no independence and someone else who I had to put first. Where was the independent person I used to be? Sorry to hear about your eye problems. I agree with Kelli, time to chillax, pretend this is a holiday and learn to make use of the time any way you want. Absolutely nothing wrong with making the most of a leisure time before you plunge back into training dogs for your hobby. Sue.

Katrina, wishing away your life is something that young people do. I am glad you came through the accident and are still in relatively good health. I know it is another burst bubble in your life but as you say you have already come through so much. I think you need to find a counsellor who deals in problems with the healing of old memories as it seems to me that you are dragging a lot of sad memories with you that cast a shadow over your present life. You have come a long way and need to let the past fade away. You will sort out this problem just as you have other problems in the past. That which does not break you makes you strong. Sue.

Karen, news from you is always welcome whatever formula you use to do it. You know you are in the thoughts and prayers of so many on here. We are all Everyday Saints and should have our own Saints Day! (((hugs))) from Sue.

I went to see Ray today and at last they are seriously thinking about stroke recovery. The physiotherapist suggested that Ray be moved to another branch of the same hospital where there is more room for rehabilitation and more therapists. Now the broken shoulder/arm is considered healed he needs regular OT appointments to see if they can stop it from flopping down at his side and get some muscle strength back into it. Where they are sending him is a building on the site of the old Woy Woy Rehabilitation Unit where he went for rehabilitation for his 1999 and 2001 strokes and the hip break in 2000. The old Unit was closed but eventually redesigned and re-opened as the need was still there for rehabilitation for the over 70s who need rehabilitation to return to their own homes after hip replacements, strokes and heart attacks and anything else that would require physiotherapy to get them back on their feet. Of course as always there is a waiting list to go onto. In the meantime they will do what they can where he is. I must say I was more impressed today when he took his ten steps as at least he was upright and seemed to have the left leg more under control, no violent shakes or wobbles or erratic leg movements. On the other hand he still had two people clinging onto him and helping him stay on his feet. It is definitely an improvement from a week ago. With the transfer to the Transitional Care Unit there is also a co-pay so as well as the extra transport costs and time spent traveling to and from the facility, 45 minutes drive from here, there is also a cost. Never mind, the days of “free medicine” are long since gone here in Australia. We can afford the costs, we don’t drink or smoke or go on extravagant outings so the money is there to pay for his care. I just have to forego emptying out my entire wardrobe and buying in the new spring fashions…lol. Once again Trevor and I are discussing the how, when and with whom of Ray getting to the wedding. I wish I knew where we would be transporting him from… I know the where to and the possible who with but it depends on whether he is walking, wheelchairing or if someone has to pick him up bodily and put him in the car. The last suggestion was Trevor’s who thought we should borrow a trolley from Steve’s workplace…luckily didn’t suggest a coffin to go with it or poor Ray might have declined the offer and decided to stay home! Ray was much better today when I visited. The aspirational pneumonia he was diagnosed with on Friday is responding to the antibiotics, his color was good, he was not doing heavy breathing and his chest was not squeaking. Mind you that just means today was a good day. There is no guarantee for tomorrow is there? With stroke recovery it is always strictly one day at a time and no second-guessing what the future holds. For today I was pleased with how he was, how he looked and the fact that he did actually respond to me and to Trev when he dropped by for half an hour or so. The bride is still busy getting the alterations made to her dress, seems the main topic of conversation at their house. I was there Saturday night for the spicy chicken wing feast and stayed on afterwards talking for a while which was nice. It is all very exciting now, as it gets close. I am glad we have this to look forward to as it somehow makes the ups and downs of Ray’s recovery seem less impacting. It is a very good distraction. Three more family members coming to the lunch afterwards as Edie’s brother who had been estranged from the family will be there with his family now. It is lovely that this event has brought them closer together. I am now seeing all of Ray’s recovery as being a long term project as the past strokes have been. I am hoping there is a recovery, some regaining of the movement and comprehension that seemed to disappear for a while. He is beginning to seem more like himself, six weeks down the track from the stroke. I guess I should have remembered that it takes at least that long for things to settle down. The chest infection and broken arm/shoulder were just complications as was the recent aspirational pneumonia. Now we need to get back to the main game! Mum and her companions are out of quarantine so lets hope things balance out there too.

Sheryl, lovely to have you back blogging again and thanks for updating us with your latest activities. Congratulations on starting the driving again and I really hope you past the test in August. I know how different life will be for you once you are driving again. The Baby Quilt sounds wonderful, maybe post a picture of it in the Gallery when you have finished it. (((hugs))) from Sue.

Christine, people on here will tell you there is no time at which progress stops. Yes up to six months is the quicker progress but after that you still find things you can do that you couldn't do before. You have to keep up the exercises, find new exercises, attempt new ways of doing things etc. As for the "new normal" in some cases it is new every day. At the moment Ray is once more going through a tough time. At the end of May he had stroke number six with some losses in physical and mental capacity. He has just recovered from a chest infection and now has aspirational pneumonia. But because his stroke he must once again work on walking, talking, exercising his left arm etc. There is not a point at which you can say "I have finished", recovery is ongoing for as long as you work at it. Sue.

Ruth, you and William are now working as team, he is doing well building up his stamina and you are getting fitter too.You do well to do all you do. I well remember that intensive therapy time then the time after that when I WAS the therapist and scheduled into our days whatever Ray would tolerate. He and I did have some good years from the end of 2001 when Mum went into care until Ray stroked again in 2005. He walked well enough for us to go on travelling holidays in our van, do a few bus tours and live a fairly active life. It is the every day therapy that pays off in the end. Sue. Sue.

Julie, so glad you had a good week. We all have ups and downs on the stroke recovery roller coaster ride so glad you are on the up now. I'm glad your son participates a bit in helping with Larry and that allows you to get to the stores. The insurance company accepting liability must have been a real relief. Sue.

I think anything you can do to exercise is good..better if it becomes part of everyday life. Sue

Donna welcome to our blog community. Good to have you here with new thoughts. I agree with Debbie, but add if you would let your brother live alone with speech, let him try as long as he is physically able to. Two fellows who have no speech in the Stroke Recovery group Ray and I belong to live alone without very much help. Initially they would have been retrained in kitchen skills by an OT and had help come in daily but now they manage, one back in his own home, the other in assisted living. If he can write, even a few words that will help too. One man we know writes single words so he will write "food" his wife writes "lunch" he writes "chicken" his wife writes "sandwich". They do that for every decision. I am ambivalent about selling the truck. If he goes back home would it be possible to find a friend or two who could take him out using his own truck with him paying for the gas etc? That would give him days out and his independence in a way being still a truck owner. Good luck with all the decision making, you are doing a great job and thanks to you and your sister he has a brighter future ahead. Sue.

Wow, Leah, I am having a grumbly day and you have so much more to bear than I do so I feel ashamed of myself. If I could I would be one of those people bringing you a dinner and stopping by for coffee so we could laugh and cry together, the way we both need to do, thinking about the men we love so much. I am praying for a miracle for you just as I am sure you do for me. (((hugs))) from Sue.

This is a grumbly kind of blog. The skies are gray the day is cold and I feel blue. I went into the hospital yesterday to see the physiotherapist who has been working with Ray, she had gone somewhere else (she also works in the community rehab team) so I couldn’t see her. Nor could I see Ray as he had gone to have an xray of the humerus to see if it had healed enough for him to do more walking etc than he has been doing. I went into to see Ray later and he wasn’t talking to me. He was sitting up in bed with his eyes firmly closed ignoring me. I guess he had been taken to the hospital, wheeled somewhere until it was his turn to be xrayed, returned to the same spot until it was time to come back to his present place. All without being able to eat or drink or even asked about anything he may have needed. With his present lack of initiating speech I guess that is hard on him. If I had been notified I could have gone in and kept him company. He is now officially listed as having aphasia. Today I again tried to see the physiotherapist again, this time she was away on a course and will be for the rest of the week! So I have no way of knowing how Ray is doing in respect to standing up, walking a few steps and sitting down. I feel as if I have been left out of the loop again. This is in a hospital plastered with signs asking: “Are you a Carer? We value you!” sure they do. So I asked the nursing staff if someone could measure Ray and let me have a waist measurement. I need to know what size clothes he will fit into for the wedding, which is less than four weeks away now. I have access to a couple os suits that may fit him. I don’t think he will be able to do much but a hired wheelchair taxi to the service venue; a taxi to the lunch venue and a taxi home or back to the hospital is what we are planning. An expensive solution but I doubt they will have him to the stage where he can bend down and sit on the car seat. That will have to come in the home stage if there is one. You can tell that I am beginning to lose hope now. I keep asking for prayer and I am praying for a miracle. I spend my time cheering Ray on, talking to the staff about how this all might be accomplished. The staff are very non-committal and I am getting strange looks and I think that in the end someone will be appointed to have a serious talk with me and that will be the end of my planning to get him home. I hope that I am wrong but no-one is telling me anything positive and Ray himself is just sitting, watching tv, eating, having a nap, no signs that he is enthusiastic about doing some exercise to make it possible for him to come home. I might be a little vulnerable today as I had an upset tummy last night and didn’t get much sleep. I shouldn’t be worrying….well maybe I am, sub-consciously because I am trying to remain positive and picture him home here with me. It is a big ask, coming from so many negatives, the stroke, the chest infection, the broken arm – to being strong enough to come home again. I do have faith it can happen but so much depends on others, the therapists and on Ray himself. Like all caregivers I am aware that so many people are worse off than Ray and I are. We do have some assets, like a roof over our heads, a small income, the advantage of medical treatment through Medicare. Though of course due to our budget restrictions we are not able to pay for private care or the equipment we will need to bring Ray home. I will hire equipment and hope that it is for a short time, until Ray gets his strength back. I am praying for a miracle, I always do, for me and for others. Not a mighty big miracle just the sort that will see Ray making steady progress and result in him coming home once more. And I do mean once as I can see this re-occurring further down the track. Ray is not strong and although I will try to keep him from having falls I know that he can “fall into space” when he is right beside me. So his being here at home will be a day-to-day thing. One day at a time, one hour at a time, one minute at a time. Sorry for this “sad sack” kind of post but it is where I am at – here at home alone and so sick of being forever a lady-in-waiting.