Staff - Stroke Support
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About HostSue

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    Blog Moderator
  • Birthday 06/04/1947

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  1. Nancy, I can only send you a hug and keep you both in my prayers. It has been a long hard road for you and your family and I commend all of you for the way you have gone through it. I hope that his end is peaceful and you all have good memories to fall back on from before this most difficult time. Sue.
  2. Lissa, Ray had this too, it is emotional lability in the opposite mode, lack of emotions. With Ray it varied from day to day but often I would tell him something that would have devastated him before the stroke and he showed no emotion. I just had the attitude that if he loved me before he still did now, he just was unable to express it anymore. I guess I took my vows seriously about the "in sickness and in health". Of course I hoped it would get better and got frustrated with is lack of emotion and at time appreciation. But in a way I simply got used to the fact that he no longer showed emotion, it was just another one of the things the strokes had taken away. I had said "till death" and meant it, however hard going it was sometimes. When he had the strokes in 1999 we had been married 31 years, we had been married 44 years when he died. We had three kids and a wider circle of friends and acquaintances in common and I looked to all of them for reassurance from time to time. It was tough going sometimes but now I do not regret the time I looked after him but am just grateful for the time we had together. I will pray for you and for him, for courage for the journey you are on together, for an easing of the pain the changes have brought and for a way ahead where you can simply live together and find a way of supporting each other if this is possible. ((hugs))
  3. Sometimes I want to cross the miles and be right there with you to give you a hug. I know the pain of loss, I experience it through my nursing home visits, visiting a person for years and then they go. It is sad but the great thing is to have had those times with them, talking and laughing with them when we first encountered, then as they go silent just sitting and being with them. I remember the laughing times and am glad I knew them back then. BUT it tears at my heart sometimes to see the changes in them and I have to remember to just be thankful for the privilege of being a small part of their lives. As I am grateful for being a part of yours. (((Hugs)))
  4. Adding you to my prayer list, hope the surgery is a great success.
  5. Ina, I always looked on respite as any time I spent away from the caregiving role so it does not have to be away from where he is now, rather it needs to be you taking time out from being either at his side or doing something involving him. In other words it needs to be something that is entirely "ME time". I used to go for a walk when the shower nurse arrived, go out shopping and stop for coffee when we had in-home care. Mine was a concentrated 24/7 care scenario but even so I managed to take some time out for me. I became a Chat Host on here for the same reason. I would settle Ray with watching a movie or even taking a nap then take the time on the computer chatting to other caregivers as "ME time". And I made some good friends that way. There is never a one size fits all solution to anything and you will find your own way. Just make sure you yourself do not get overtired in looking after your husband. It is hard sometimes to remember that you are a person in your own right when you are a caregiver but it is good to maintain your own interests as much as you can to keep your own life on track. I really miss my husband still , we had 44 years together, some of them not good years but nevertheless we were a couple who were very fond of each other and good together and that is what I miss so much now.
  6. I really agree with what you have written here Asha. Somehow through all we go through if we trust we are led through a path that brings us to what is best for us.
  7. Sephardicina, you will need to pace yourself, caregiving is a marathon, not a sprint. I looked after my late husband for twelve years, through strokes, infections, injuries as a result of falls etc. It was a tough life and to begin with like you I was constantly afraid of what would happen next. In the end I realised I had to appreciate every good day, and whatever happened just get up each morning and go on with the day. It was hard at first living one day at a time but it avoided me going mad from overthinking. It is a hard way to learn to value each day, but you have that extra time with your partner and that is a blessing in itself. I don't have any real advice except to learn as much as you can about the life of a survivor and caregiver, there is a lot of information on here. And if you can find one it is good to join a local support group. I joined a Stroke Recovery group I still belong to that group and with those friends and people I have met on this site it has had such a positive effect on my life that I doubt I would have survived as a caregiver as long as I did without them. I found blogging therapeutic too and still maintain a blog on here that is now about my life as a widow and former caregiver. Sue.
  8. Hi, I was a caregiver to my Mum (Alzheimers) my Dad (terminal cancer) and my husband (multiple strokes) simultaneously for a while so I know the pressure you feel yourself to be under. I know time is of the essence but you have to make decisions for two very different cases so take time to research as the others have said. We all made promises not to put our loved ones into care, usually knowing it might have to happen so if you can find a facility you think will suit her it just has to be done. Stall the transfer for a while if you think it will help her recovery. Then it is day by day, week by week supervising her care as much as you can to get the best result. Good luck with it all. And as a caregiver you need to look after your own health as well (I know that is not an easy job but do what you can to find some time relax for a while every day). Sue.
  9. Some stroke encounters

    On Saturday I went to the Combined Stroke Groups morning tea. I have stepped back from the Stroke Recovery group that Ray and I belonged to “WAGS” in the last six months but got a reminder email from one of my friends who belongs to that group and then a phone call to ask why I was neglecting to meet up with my good friends there. So I decided to go back to meet up with them again and was glad I did. Friends from all the different parts of our life are a gift and I should never stop being thankful for that group of people. The guest speaker was a Professor of Neurology and he talked about the various methods of rehabilitation and how the type of rehabilitation a stroke survivor needs is reviewed in a stroke unit and ideally a program tailored to that individual. I don't need to tell you all that the theory is marvellous but the application of that method outside of teaching hospitals is less likely to happen. He spoke until the time was up so luckily no-one could tell him their ideas on that subject as I think some of the replies may have been harsh, particularly from those who had had a very different experience during their own recovery. It was good to see so many friends I had made there, sad to think that some have passed on or are now in nursing homes and unable to attend. Time moves on, I have been a member of that group since 2006 so a lot has happened to them and to me in that time. It is sad to see some of the older caregivers struggling now with the caring role. I know how much the last few years of looking after Ray exhausted me so can empathise with them. Just being a part of that group is a boost to them, the men still go to Scallywags ( lunch and a chat) once a fortnight and the Carers monthly lunch group still gather. Unfortunately I can't go to that as it is on the same Saturday as our Market day at church. I have been trying to meet up with my 83 year old friend who looks after her son at least once a week and at least chat to her for a while. She is really slowing down now and showing her age and I feel for her as sooner or later her son will have to go into care and that will break her heart. But for a lot of people like my friend there isn't a lot of support from other family members so little relief from the caregiver role. Her other son looks after his wife who has cancer so he is not unwilling but unable to help as much as he would like to. Her daughter lives in another state and does come to see her two or three times a year but that is nowhere near enough. I went out to Broken Hill to visit Trevor for ten days and came back home last Tuesday. The first four days Alice was with us and then we had a few days at home.Trevor worked a few hours most of those days. I have had many trips now to Broken Hill so there is not much I haven't seen there. I always enjoy walking a few houses up and seeing the shingle-back lizards at the home of a lady who volunteers for WIRES, one of the organisations that helps injured wild life. Shingle-backs are slow so an easy target on the open road. She had over 30 adults and many young lizards in her back yard. She said she is not allowed to release them until mid-August as they sleep most of winter and then she has to make sure they are eating before releasing them. This visit we did go to a few Art Galleries. There was a n exhibition of works by Outback Artists at the Regional Art Gallery and I really enjoyed that. I was surprised that the “receptionist” had a blue tee shirt and old paint speckled trousers on but he pointed out which exhibits he was sure we would want to see. He was right and I really enjoyed the diversity of paintings of the wonderful red soil and brilliant blue skies in so many different styles. Afterwards he told us he was actually the installer and the receptionist had gone home to prepare for the special opening that night. We were lucky to be there on that day I think. Then we drove down to Adelaide, a seven hour drive from Broken Hill. I wanted to go and visit my older son and his partner and family there as his partner has had what was at first called a series of Tias and then a small stroke. She has recovered quite well with the exception of some slowness of thought, massive fatigue issues and a real loss of confidence. She walks like an old lady now (her words) although she is in her early 40s and I can see she is upset because after three months she knew she still didn't have the energy to go back to full time work and so lost her job. We did talk a little about my experience with Ray with strokes and I hope that helped. Not much more I can do for them being so far away except keep in touch. It is still wintery here but I can tell by the longer days and the frantic activities of the birds that Spring is now not far away. That is something to be happy about.
  10. Fred we surely do miss you when you are not around. If what it takes is your grand daughter logging in for you take that option. Bless her little heart. You and I have been friends for a long time on here, and you have been a friend to so many so any way you can get on here is right by me. (((hugs))) from Sue.
  11. You may have noticed I don't do a Blog Report at the moment, that is because there are only three or four blogs a week at this time and not as many people reading them as usual despite the growing numbers of members on here. So why should YOU read the blogs? For Survivors: Reading about what other survivors are going through gives you an insight into the struggles others go through and what they feel they have accomplished. I went to my Stroke Recovery group today to a combined Morning Tea with other Clubs, about 80 of us there and we had a Professor of Neurology as guest speaker and he said one of the benefits of any Stroke group is that it gives you the feeling that you are not alone, gives you an idea of the range of deficits and gives you new social skills that are beneficial to your recovery. I have always found hope and inspiration in other people's stories and learned from them. Many of our bloggers here provide information on what you need to do about many issues affecting stroke survivors and their caregivers and family members. So being a part of this Blog Community gives you some of those benefits. For Caregivers. I found in my own journey that the Stroke Recovery group Ray and I belonged to and Strokenet where the two most important organizations in my life. For many years of the stroke journey because of our ages I felt so alone in that most of my peer group had no idea what Ray and I were going through.The feeling that someone on here knew what I was going through, had some empathy for what I was dealing with and what I was feeling made a huge difference to my life. I don't know what you feel as a caregiver until you put it into writing, either as a post or a blog. Either way I can communicate with you, support you as much as I can and help you not to feel alone in your struggles. And you will find that knowing that you are understood does make a big difference in your life. So if you haven't blogged for a while do an update, if you haven't blogged at all now is the time to start and if you are blogging right now Thank you very much. Sue.
  12. Asha, we all do too much, you taught me that, so rest and relax now and things will turn out okay. BUT you have all those new precious memories so it was worth the effort.
  13. Thanks Pam.
  14. Pam, I have two sons and saw them both last week. I travelled out to Broken Hill and Trev took me down to see Steve in Adelaide. It was good to spend time with them both. I'll blog about it later, too tired now.
  15. Asha, with your philosphical nature you will settle into a new environment in your own unique way. It is hard to make somewhere your own space so take it easy, make small changes and one day you will look around and love what you see.