swilkinson

Katrina, nice blog. It is good to find company when you are lonely and your going to the park had a good result as well. I get ;lonely sometimes and do the same thing, go where people are. You are in a good place right now, long may it continue.

I have a friend whose husband has the same compulsion to say just what is on his mind, If you are with her you have to get used to his remarks about your hair, your weight, your attitude and the way you dress. I like her so I put up with it. The remark during the Bible reading was awkward but the Eucharistic Minister would rise above that anyway. I want to say as usual that you do very well looking after Gary knowing that he is probably what the doctor would see as someone who needs to go into a nursing home, I got the same thing with Ray, all wives with disabled husbands do. It is your decision to make and one day maybe you will have to, but for now you are still coping.

Fred, I am glad you are feeling so much better and even contemplating going back to work. Good for you, long may it continue.

How fantastic to see you do an update blog Ruth, miss you as part of our Blog Community and on Caregiver Chat. I know as a worker and Caregiver you have a very busy life but we do miss you.

I have been very busy lately too busy to have the time I need to do things at my own pace. I am having to remember I am getting older and need more down time so I have to think of the motto: "Live one day at a time". I understand the necessity for that when I look back at what happened during the week and it is just a blur. That is not the way I should live life at my age, life in the fast lane is for the young who have higher energy levels and a quicker recovery time. I am supposed to be changing some things in my life so I took on a volunteer job on another site but I can see already that it is not going to work. On here I monitor and comment on the blogs, do the Blog Report, do the chat on Tuesday nights with co-host HostSally. That is probably about eight to ten hours a week. I fit it in when I have the time, early mornings, afternoons, and late at night and that's fine. I cannot fit in another eight hours on another site, I don't know why I thought I could. My workload at church has been increasing, lots of the older people from our congregations are moving from their own homes into assisted living, hostels and nursing homes, it has been happening all year and as they move they seem to appear on my visiting list. I don't mind the visiting but when you look at ten people to visit once a month at an hour each not a problem, but then add people going to hospital (one hospital is 40 minutes drive away) and that adds hours to the workload. All I do is done as a volunteer, not even the parking fees are paid so money as well as time needed to volunteer for that. Don't get me wrong, I love the work I do, I enjoy seeing the smile on the person's faces when they settle down for a good old chat and the regret with which they see me leave. I remember so well the gratitude I felt towards the people who visited Ray. He used to sometimes remember those who visited him in hospital but in the nursing home he didn't remember the visitors but the other men in his room did. One would say to me: "Ray had a visitor earlier today, I think he put the card she left in the top drawer." Then I would look for it and find out who the kind person was who had been to visit. It may not have remained for long in his memory but it is still in mine so in a way hospital visiting is just a way of paying it forward for me. Our new minister is welcomed tomorrow night, the beginning of a new era. I do know him so am pretty sure we will work well together. He will just be settling in when I go on holidays so hopefully that will give him time to organize some changes and I will come back and find the routines changed and be okay with that. Well, that is my thoughts on the matter anyway. A period of adjustment all round I am guessing. I love my church and the people, well most of the people. There are always a few who seem to be out of step but that applies to all the organisations I belong to. Not all people cooperate and not all "pull their weight" as my Dad used to say. My son rang me tonight. He amused me as he described how he set off the alarm at one of the big complexes he cleans. The code had been changed and unfortunately someone had forgotten to notify his boss, so the cleaning team went in and off went all the bells and whistles, and that whole part of town woke up...chaos ensued. Of course it was nobody's fault, well no-one owned up to being at fault, so the good citizens hopefully turned over in their beds and went back to sleep. A lesson learnt. I seem to have more and more on my to do list and less time with the shorter days to do it all. I have the potting mix and the pots to repot the bromeliads into smaller clumps so I get the flowers next year and where is the time for that? Rain and wind has taken some of it and other activities have taken the rest. I do so miss someone to work alongside and still think if only I could have Ray back as his old active pre-stroke self, come forward to the age he would have been today how I would love that. We had such plans. Even this far out from his death I still sometimes think that way. Wishful thinking on my part. And so tomorrow is another day, a day already showing signs of being busy. I love to be busy, not sure like to be too busy. Do I long for days gone by? No I don't. Do I still miss Ray? Yes I do, 44 years of loving and looking after someone is not forgotten. That man is still in my thoughts. I guess he will be for a long time to come.

My solution was routine, set a patterns so Ray knew what day it was and what we did on that day, I had plans for the day even if it was washing Monday, ironing Tuesday baking Wednesday and so on. If it was fine in summer it was lunch outside on the verandah. If Ray wouldn't come out I put the sandwich in front of him and took mine out. In the end he came out too but it took a while before he did that. Me ignoring his calling out to me to get him this and that probably helped too...lol. TV was for late afternoon and evening so never in the morning, Ray did word puzzles and had other activities in the morning. I did housework in the mornings. Ray slept most of the afternoon so I did outside activities. Sunlight is a mood lifter so always felt better after doing some gardening. We had a shopping day and both of us went shopping. We had so many medical appointments that they were also a source of "getting out of the house" as I included morning or afternoon tea out as part of that. The biggest contribution to my sanity was Caregiver Chat and the support of the people on there, them for me and me for them made a huge difference to the way I saw life. Sharing my worries whether in a blog, in a post or in Chat and getting some good positive feedback made a wonderful difference to me and how I felt about our life together.

That is great Sandy, long may he continue to improve.

Sarah, you are doing really well, the weight loss is terrific. I can't lose that much so I am content with what I have lost and will try to do more exercise when I can fit it in. Glad you worked out what is possible for you to do to achieve it. Gary does look good. He and Kelly seem to make a good team and you get the health benefits from time out and time off duty.

Thank you Pam for sharing that experience. Yes it is hard to go out but when you do you see new aspects of the world. Eventually you will be comfortable with this, for now it seems a little strange. Bravo for you brave soul.

Do you remember the book: "I'll teach my Dog 100 words?" well we learn new words when we do something different in our lives. During my time as a caregiver I learned a lot of new words. I learned the meaning of therapy, rehabilitation, recovery, survivor, caregiver, isolation, rejection, loneliness. I learned what MRI, TIA and many other acronyms stood for. I learned about patience and I learned about what "till death us do part" really means. Above all I learned the real meaning of LOVE, that true loves that goes beyond the call of duty and beyond romance and passion and a lot of other emotions we mistake for love. Real love does go on and on and on, regardless of circumstances. Ray and I didn't have an always happy marriage, like most people we had good times and bad times, we had various levels of income but we still raised three kids and we somehow managed to pay off a mortgage and own a house. We looked after our kids , our parents and our neighbours and did all the right things as far as we were able to. But that did not save Ray from having the strokes. Bad things as we know do happen to good people. But good people have the power to somehow get through them, get over them and get beyond them. Somehow I am surviving widowhood. I never wanted to be alone and up till Ray's hospitalization, his moving into the nursing home and his death I had never been alone. That is apart from the various other hospitalizations, but they always seemed so temporary. Now my aloneness is permanent. I may or may not get a new partner somewhere in the distant future but for now it is just me. So I have to learn some new words like independence, handyman, publc transportation, instructions, directions and "damnitall" which was one of my mother's favourite expressions when something went wrong so I use it quite a bit. I am learning to adjust, I am learning that it is okay not to be able to do something, it is a hard learning curve. I am learning the beauty of Facebook chat. When it is 11pm my time I might be chatting to someone in America who is just getting up or someone in England who is just having lunch. I have a regular friend I talk to on Facebook, he is just a friend, nothing more. He remembers me from when I was 17 and we have both lived around the same areas for 50 years so have seen a lot of changes. Our chat can be about a place, a time in our era, household gossip as we still have some friendships in common. I am learning that people have similar interests but vastly different opinions to my own, that having limitations does not have to lead to disagreements, that friendship is an end in itself. I am learning that friendships overcome age barriers and my friends can be three, thirty three or ninety three and still be the best of companions. When you have a partner friends are not so important but when you are alone they are so much more important. Survival for me is based on relationships. I need people around me, I do enjoy solitude too but in small doses. So friends have in some way taken the place of my now scattered family. Friends are someone I ring in an emergency, to ask for advice, to ask for directions, to ask about something I have come up against but know nothing about. So I have learned that friends are an invaluable resource. I have learned the importance of social interaction. I learned here the importance of the Chat Rooms. When I started out as a chat host I did general chat and talked to a lot of survivors. This gave me a look into Ray's world. Ray could not tell me about his feelings, never could even before the strokes. So when I wondered how did he feel about having a stroke, his lack of independence, his need to be reliant on me I heard it in the stories of other survivors. Survivors and their stories helped me to get better picture of how the world looked to Ray and so I learned to adjust to his meaning of life, his needs, his life as it was now with all it's frustrations. I learned words like compassion, empathy, forgiveness, endurance, and learned words I never wanted to hear like incontinence and dementia (though that one I already knew as my mother had dementia). Then I started Caregiver Chat and other caregivers taught me that support was where you find it, that other people understand because they are in a similar situation and that others can share your emotions. I learned that I was never alone, that other people did think of me and prayed for me. We actually occupied the same time if not the same space even if they were not in the same room as I was. They too were sitting at their computers with tears running down their faces as we shared another's harrowing moments or learned that further deterioration of a friend's husband or partner meant they had to had to move into care. We shared whatever was causing us grief. And we learned to handle the ultimate grief, when death came as an end. And of course I am a wordsmith so have found much joy in blogging. I have a blog here, you are reading one of them now and one on widowedvillage too, which is my frustrations of widowhood blog. I started it for the reason that I didn't want this blog to deteriorate into a "poor me" blog about loneliness and all the troubles associated with widowhood, I want this blog always to reflect on the stroke journey which in a way will never be over for me as it dominated 22 years of my 44 year marriage, a big slice of my life. And because I still have friends here who understand. And so my life has always been a learning experience. I learn as I go along, hopefully I learn, adjust, accept and move on. But sometimes of course I get stuck in one spot for a while and grief has certainly contributed to that. But I know I will live long enough to learn another 100 words and maybe many more. I am hoping some of them are happy words like retirement, holidays, travel and include new experiences. We will have to wait and see.

Pam so glad you had a great Mother' Day and the kids spoilt you, so they should have. I do wonder about people who hint they would go somewhere to die, they must have very little confidence in their ability to overcome. It is inner strength and courage that gets you through and you have that in abundance. (((hugs)))

How good to hear there is a job you can do together, I just love it when someone works alongside of me, it is one of the things I really miss since becoming a widow. At least when Ray was here he could watch me or come and look at the result of what I had done. Now you and Bob can actually see what the two of you have achieved. Bravo!!!!

A day is beautiful if you see it that way, mist rising, birds singing, a fresh air experience is always good. Thanks Jay.

Asha for the last couple of years I have been learning to do things on my own. It is nothing out of the ordinary usually but like you when I am out of my comfort zone I find help is provided. The saying "there is nothing to fear but fear itself" is pretty right, we fear the unknown but once it becomes the known there is no longer a need to fear. My advice would be as well as doing things with your husband try to continue to go out with others too. There may come a time when, like me, you need to have that experience behind you. No-one wants to be alone but once you are alone you have to go on living anyway.

Katrina the good days are like bright lights against the darker clouds of the bad days. I have a good friend who has depression and she told me that. I loved all your special things you did on the weekend, real fruit smoothies used to be one of my favourite things to make and I know my kids and grandkids enjoy them too, Sounds like you have a good summer of fresh fruit smoothies ahead of you. Life can be a roller coaster ride but i think you are starting to realise that and are learning how to handle it better now. (((hugs)))

Yes, travel is fun but takes some planning. I am sure that you will both be fine. I agree with Nancy that there will always be "dramas" but they can be "adventures" too and make geat memories.too.

Thank you for finding this David.She certainly speaks well and is even funny at times. Wish everyone could retain their sense of humour like she has.

Bob's thought patterns are certainly more understandable now Sandy, he writes quite well too. There is still improvement to be made I am sure but happy he has come this far. You make a big difference in his life too.

Katrina, no wise words, just (((hugs))), hope you find the hope again soon.

Jay, the stroke journey seems to be all about accepting change and adjusting or that is the way it was for Ray and me in our journey as survivor and caregiver. You seem to be able to adapt to the changes in your life so I am sure you will to this new one too.

One of the things I realise I need to do as a widow is widen my world. When you are a caregiver your world narrows, in my case until the only focus was Ray. Ray's wellbeing, Ray's health issues, Ray's needs all dominated our lives particularly in the last few years of his life. Then when he died, followed by Mum's death two months later the grieving took over and that dominated my life. Then at two and a half years out I suddenly realised that if it was to be it is up to me. So now if someone asks me if I can do something and I have time available I do it. This morning I spend the morning on the beach, not sunbaking but volunteering at an Ocean Swim meeting. My next door neighbour was the organiser and he was short of volunteers so I went with him. I acted as general rousabout to the girls who did the registrations. With an all age range from 10 years olds to the over 70s there were a lot of people registered and time keeping was strict. I had never done anything like that before but if someone shows me what to do I am fine. And at the end, for being a volunteer I got a free t-shirt. I had forgotten how cold it can be at 7am and this morning was no exception. But by 10am it was beginning to warm up and by noon it was warm. The view across Terrigal Beach is spectacular and it was wonderful to be there instead of at home doing housework. I was envious of the fitness of some of the people my age as they swam either the one kilometre or two kilometre course and in one case both. Some people do really keep themselves fit. One thing that astonished me was that as the swimmers came out of the water a lot of them stumbled. One of the women who had been a competitor for many years told me that is because during the swim they hardly use their legs so when they get onto land the blood supply is in their arms. Made sense to me but was something I had never encountered before. Of course the younger men won the overall prizes but there were prizes for age brackets too so many went home with a prize and others with a happy smile because they had done a personal best. One good thing that happened to me this week was that a good friend came and cleaned out my gutters. During the really heavy rain of the rain event the gutters overflowed and water came in where my computer usually sits. I did have the laptop in the bedroom fortunately. Now it will be in the bedroom permanently as I worked out a way to use an old sewing machine cabinet of Mum's as a computer desk. It will be warmer in the bedroom winter nights too. So a little bit of a change of furniture to suit this new setup this week as well along with a general tidy up. It hasn't been such a good week in another way as I lost my car keys. It was my only set as Ray lost one on a hospital visit a few years back and I never replaced it so I will have to get the car rekeyed. Ouch!!! that is going to cost a lot of money. I am to blame as for some reason I got distracted and have no recollection of where I put them on Wednesday when I came inside from getting a hat out of the car because it was warm and sunny and I thought I would wear it when I did some gardening. Yes, I know, we all make mistakes. One thing that has become clear to me once again is that I work best as a member of a team, I am happy to occasionally be out the front leading but more comfortable when I have someone else, or several people working alongside of me. I guess this is one reason I felt so lonely after losing Ray. We were a team, as a couple we often worked side by side as volunteers as well as in the home. So it was Sue and Ray, or Ray and Sue depending where we volunteered. It was not until the last couple of years of his illness when we no longer did the Christmas Stocking ticket selling together that this partnership broke up. So today was another adventure where I can say "Been there, done that, got the t-shirt to prove it.

Hey Fred! You are still here, still writing, still blogging, still posting and encouraging others, that is what counts. Age slows us down but as long as we can still keep smiling we are okay.

I remember a lot of the nurses during Ray's many hospitalizations would say: "Welcome back Ray, nice to see you again Sue" as if we were members of their family. That was in the early days of course. Later when it was all agency staff the reception was a lot colder and more clinical. It was great then to see a familiar face and get a smile and a wave. Good nurses are still out there working but the majority do not have the time to be as friendly now.

The stroke recovery group Ray and I belonged to (I still belong) had several members join a mentor program where survivors talked to the new stroke survivors in our three local hospitals. It was a great success. Then funding was cut and they were not allowed to do it. Such a shame as no-one knows as much as the person who has been through it. Keep up the good work, you can lift someone up with your kindness and empathy and make their journey so much easier.

Welcome to the Blog Community I am a former caregiver now a widow after looking after my husband for 13 years full time. He had many strokes, they simply couldn't stop them. Also A-fib, fits, seizures and TIAs but as he survived till he was 70 from the first stroke aged 48 he had a long life really. And for the most part it was a good life. As Sandy said journaling is good and allows you to see your progress and how life can change for the better. Even after stroke.