swilkinson

After Ray's first stroke he went back to work after six months. Someone put a recliner in the back of the workshop and if he was asleep in it one of the other tradesmen would wake him up and off they would go back to work. Sometimes people understand more than you think.

I think you can do it as I have seen one handed Moms do it here. I think the weight gain as she grows and the amount of wiggling she does will be a challenge but I am sure you can adjust. As you say the whole family has to adjust too. Just don't think you have to, you choose to.

Katrina, I think this is just life. I have always called myself the lady-in-waiting as that is what it seemed like when we queued for all of Ray's various appointments etc. I thought when he died I would be free of all that but it seems like we have to get in line for everything else in life too. I suggest you find some books you like and read to fill in time, if you don't want to read watch DVDs, go sit in the mall and do some people watching for a break in between. That is how I filled in a lot of time in the past. Great news about the back pay and being able to pay bills etc with it. Life seems as if it in on hold a lot of the time. I wish you could jump into a good job, find some great new career etc but in my experience if you can get a job you can manage that pays what you need to pay your expenses that has to do.

Ray had massive fatigue issues even after the first mild stroke in 1990. He worked from six months after his first stroke. He came home from work, walked into the house, sat in the chair and was out like a light. I woke him for the evening meal and then he'd look at his watch and off to bed. He slept most of Saturday and Sunday afternoons and then off we went for the next week. After the second and third (four weeks apart in 1999) he no longer worked so sleeping was not as big an issue, he slept at least 12 hours each day unless we had doctor's appointments or had to be somewhere, I asked the neurologist why and he said it is like you are carrying half your body weight with just half your body strength, which made sense to me.

You are ALL Phenomenal Women for sure!!!!

Molly, you are doing everything you can to make his life improve. Take any advice given, Sandy is right, never assume the staff is doing any particular thing, always check it out for yourself. BUT also look after you.

Great you are back Fred. Yes, we always need people to comment on posts and blogs and generally make the newbies welcome as well as encouraging us older folk to keep on keeping on, so glad to have you back on the job.

Where there is a caregiver there's a way. Clever idea.

Way to go Lenny, walking in the mall. I had a Canadian uncle and he did a lot of that after having knee surgery. Thanks for the reminder that people do not have to be shut in, there are places to go. IN the busy run up to Christmas it is easy to feel left out of life so in a busy mall with that life all around you, maybe a cup of coffee to relax and recuperate eh?

Thanks Lydi for the four day vacation run down. Life is so good sometimes and we need to appreciate that. I am a great distance from my kids and know Christmas day it will be just me until 6pm so I look back on those family times with a lot of longing. Thanks for sharing yours with us, i hope the new holiday you celebrate is just as good for you. Sue.

Massive fatigue issues are a part of stroke and there should be some documentary evidence of this. I didn't understand about that until 2006 when I joined a stroke group and found out it wasn't just Ray trying to get out of doing his chores. But I did believe it as I saw it with my own eyes as he collapsed into a chair as soon as he got home from work after the first stroke, then I woke him up for dinner and again for bed. I probably was harder on him than I would have been had I known more. he also slept most of the weekends which made family life more difficult i am not sure about all of the legal aspects of the American system as I am Australian but here we would be able to have our physical limitations taken into account. And if one spouse was earning a lot more than the other the lesser paid would have less to contribute. But that is here and you are dealing with a different system.Best of luck with it all. We don't allow guilt here...well I wish that was true, but what happens happens and we get on with it. Trevor, our younger son, was fifteen when Ray had his first stroke and saw all the consequences of that and it made him a more compassionate adult. Your daughter and son are old enough to come on here and read all about stroke so encourage them to do so. Sue.

Dean I have tidied it up a bit but it is fine. Welcome to the blog community. Everyone's story is an inspiration and we all learn from each other here. The blogs help us to shre the journey and see ourselves in the light of what others write. Good first blog.

The staff of the store you were in must have had stories to tell after your crash. Good to know you went out and conquered yet another fear, did what you had to do and lived to tell the tale. Hurray, you are a champion! it is a brave move for people in pain to challenge themselves the way you did. The walking is a huge challenge. Ray had to struggle back to some form of independence after every stroke (he had seven) and the day he said he thought he could go out without the wheelchair was always a special day for both of us. So stick to your goals and one day it will happen.

Thank you for writing this blog, It will help us here in the Blog community to get to know you better and to be more supportive. Yes, the strong are never helped by those they helped, it is a fact of life. And you will find some unexpected friends and allies on the stroke journey. Support in where you find it, say thanks and act grateful is all you can do. Better to have loved and lost than never to have loved at all. It's an old saying that just means - count your blessings.

Always good when you have a happy day, and your team wins, way to go Bob!

I am glad you feel loved and beautiful when your family is around you. we all need to feel that way. And looking for fun despite the pain, that is a good thing too. (((hugs))) from Sue.

Bartlett pears - Yum. Do they make Peri (like apple cider only made with pears) in your area? That is a really nice drink. Yes, in any growing area good seasonal rainfall is so important. Thanks Ed for committing to writing Blogs. That makes me a happy Blog Moderator.

One of mine would have to be: I am thankful for all the people on Strokenet who have been so supportive of me. You are still the guru Asha.

Relax and enjoy the peace and quiet. There is value in spending time alone. If you need company there is the phone, just make some calls. Happy Thanksgiving. Sue.

Pull on a skirt ( elastic waisted ) or slacks in winter, bright sweaters and layers of clothes to keep out the cold. I wear prettier tops for summer, plain tops, floral skirts or the reverse. I used to dress like that as the caregiver as Ray's dressing and washing down took 45 minutes. As long as you have colors that suit it is okay. Once you get a style you like buy it in three different color combinations. I am a woman and I need to look like a woman but that includes slacks and shorts ( as long as no-one else is here and I am gardening...Lol.) You will find what you want to wear eventually, this is just a first expedition. Thanks for the blog Pearls, it hopefully will be viewed by other women in your situation and you will find how they manage the dress-up situation. Sue.

Lenny, we do not have an icecream icon here that I can find but if we did I would certainly give you an icecream every time you published a blog. I love your style of writing. It is as if thoughts tumble out of your head onto the page. I just love that. For everyone else, this is a comment on a comment Lenny made to me on my Facebook page. Thanks Lenny for your support and encouragement on my journey.. Sue.

Today I had a visit from an old friend, old in the sense of from a long time ago, young in the sense of who we were back in the days when I came to this area in my mid-teens. He was the younger brother of one of my friends, the young one, the teenager, when the older ones seemed like men. He knew of some of my boyfriends pre-Ray, remembered my wedding, the birth of the first two of my three children. He was going to bring his 94 year old mother to see me but she was too tired to come today so he arrived early and I didn't get to chat. Sorry to whoever was there, I did mean to do it but as he had only just arrived it seemed the wrong thing to do, to leave him on his own. I have lived a long life, not as long as some but a life packed full of experiences, both good and bad. I was born in England and migrated with my family at the age of seven. I think I have blogged about a lot of that buried way back in the first few blogs so will not repeat those stories. Our lives are full of stories, of course we do not see them until that episode is over so the pattern of our life appears. I know there are times when we are in despair because we think things will never change, that we are stuck in this one situation forever but it is not so, life goes on and we with it. Looking back on the 13 years I looked after Ray I am so glad now that I was able to do it. That there were always people around me trying to help in some way. For those of you in despair right now please look around at your many friends and supporters here and in your every day life. Ask for help when you need it, ask if people know where you can get help. A lot of times it was not some professional person, not a doctor or specialist but aides and nurses who told me how to find help. Often it was someone who was also a caregiver. In my earlier blogs I recorded that too, the girl who signed the forms for Ray to go to Camp Breakaway for the first time by using his dementia to get me some funding, the nurses, here and on Strokenet, who told me how to make up a bed to help make the change after an episode of incontinence easier to manage. My visitor's mother is my daughter's Godmother. She was a good friend to my Mum so that seemed a logical choice. She had a large family and added to it whoever she saw as being in need of some family time so when I went there for a visit there were boys everywhere, as a teenage girl a dream situation...lol. So I always had a choice of dance partners, someone to join for a game of cards, someone to go for a walk with etc. It only lasted a little while and the older boys went off to start their careers and the girls stayed on to work locally as I did and the time was over. It was fun to recall all of that though, I think I had forgotten that it ever happened. One of the older brothers was called up for National Service and finished up not in Vietnam but in a Queensland Air Base preparing helicopters for Vietnam. The other trained as a pilot but finished up as an engineer and then an instructor and also stayed in Australia. It is the accident of chance isn't it? Something we think of when we look at our lives and ask: “Why me?” or “Why not me?” Sometimes I am seeing life a little more clearly now. It has been a long time coming, this clarity. I read on here of all the foggy situations we all find ourselves in on the medical merry-go-round, with our loved ones or in our own care situation and wish this clarity was available there too. But honestly if I had known what the future held in some parts of Ray's illness I would have fallen into despair or not been willing to continue his care knowing what was ahead so maybe it is better foggy than clear at some times in our life. I recently went to a Memorial Service held by the local Palliative Care people. I went to accompany the friend whose 47 year old son died this year. It is a beautiful service particularly the part where the bereaved and their friends go forward to light a candle in remembrance. That is part of what I do in my blogs now, I light a candle to some part of the memories of Ray I hold in my heart. The candle burns briefly and then dies but I hope in it's brief life it was beneficial to someone else to also see that small glow. I wonder whether my musings are relevant here now, whether I have got too far out from the coalface of day-by-day caregiving to be of any use to anyone. I hope that the encouragement and support I can offer is enough to make up for that. I do love being on here, helping in some small ways to hold the candle up high enough for someone else to see ahead. Peace be with you all, in your daily round, enough peace to make life worthwhile even on the most frustrating day.

It is wonderful you went and ate and drank like everyone else. Yes, I do recognize that "Cinderella " feeling as I have that as a widow when I find I am the only one without a partner at a wedding and so there is a spare chair and every time the waitress asks: "Is someone sitting there." they all look at me. I am pleased you had a sense of adventure about the whole evening, it must have seemed really surreal. Thank you for sharing it with us.

Glad you have updated us. I know from my 9 years on here that people do leave suddenly, just get sick of journalling mostly but I always worry for a while that there are other reasons too deep to blog about. Yes and no about the changes, there are good times among the bad usually and some new insights into ourselves and how we deal with pain and suffering. And maybe a deeper love for our Significant Other too. (((hugs))) from Sue.