swilkinson

Yes, just hold on, count the days, mark them off the calendar, make a treat for each day to make it special. Do whatever it takes to keep that joy in living. I think a lot of people find their job boring or demanding but somehow manage to stick with it. I speak as one happily retired of course so just my memories of work life.

Glad you are blogging Pam. Each blog adds something to our experience of life so we learn from each other. I agree with Kelli, some happiness shines through.

Surprisingly we had a blue sky day today, so maybe the weather men were wrong in their predictions and the rain has just slipped away? Probably not and I will awake to rain in the roof tomorrow maybe? Either way it was great to be able to get out and about today. I do so hate a whole week of rain, a day here and there yes, a week of rain, no, no, no.

The rains are here. In either January or February we have a long rainy period, today is the third day of what will probably be a week of coastal rain. As a single person I don't have a lot of stimulation so dull rainy days whether in winter or summer affect my mood. I cried over Ray for the first time in a while. I was thinking he should be having a nap now. It is strange how I don't think of him hourly but still daily. For so many years I planned his life almost hour by hour and now I still think of him as part of the daily routine: "Today I will do... and Ray will do...no wait, he isn't here now." It is two years, four months, eight days, and I still miss him so much. I was just reading Jeri's blog about her father speaking of his late wife as if she is still here. I think that is very easy to do, so many memories are tied up in the one we lost. I would say : "I wish Ray was here because he would know what to do." thinking back not to how he was when he died but how he was before that, the strong man, the clever handyman, the fount of all knowledge in some areas, like why the car is making that funny noise. Of course I often disputed what he said, I can be a smart mouth sometimes, but I still relied on him for a lot of advice. We were married for 44 years so how could I not? Yesterday, in desperation,despite the downpour, I went shopping and found a couple of people I knew out and about, no offers of coffee but that was okay, I can sit by myself anyway. I learned to do that in my "time out" times when Ray had a carer in to mind him. Sometimes it feels as if that is still the case and I am simply away from home, filling in time. February will see the end of that as all my regular activities will start up again and I will be busy, busy, busy. A bit like the mouse on the wheel but I can hop off whenever I want to, or so I tell myself. I had a busy, happy Australia Day long weekend, something to do every day from Friday to Monday, most unusual for me. Such a contrast to my lonely Christmas but then that is down to me too, to plan things better. Next Christmas a few of us older widows have decided to get together if nothing more interesting is on offer. I have to remember that saying: "if it is to be it is up to me". That is a single woman's mantra. And I have to learn to plan trips and travel independently too. No more waiting for someone else to make the suggestion. It is "atta girl Sue" and away I go. We have so many forms of communication now and yet I can still feel lonely. I look at the phone and wonder who I can ring and find someone home who wants to talk to me for a while. The world is full of busy people and so if I talk for 20 minutes to someone that is a bonus. "I am sorry I just have to..." is one of the excuses I hear and I also use myself. Sometimes it is the truth, some times it is only an excuse I know. That is okay, they are allowed not to talk to me if that is their choice, they have not experienced the loneliness of widowhood yet. I am lucky on Facebook that my north American friends are just getting up as I am going to bed so I can talk to Sarah from Strokenet as she is putting her dogs out. I can also talk to a friend in Western Australia (three hours behind my time) as she is just settling down for the evening. My older friends talk about Facebook as if it is a scourge but I find it handy for that laugh at some of the funny postings, that stimulating thought as many of my Christian friends post some word of wisdom or an insight into another's way of life in postings and pictures. Like the blogs here that feeling of being in touch, of knowing where people are on their journey is important to me. I have been outside sweeping some of the water away from the back door, the back yard is drenched after three days of heavy rain so it is like a slow waterfall in places and really there is nowhere for the water to go. The fence is a barrier now and I'm guessing I will be out rediggng the drains on the other side of the block as soon as the rains clear. That is always a job that needs doing. Never mind I have been doing it all myself for many years now and the leaves still fall and block the drain off. I know the gums are a problem but I look out on leaf and flower and enjoy that view so they are here to stay. So plenty to do when the rains are over. In our household in the teen raising years, if you said you were bored you got to vacuum clean the house. I almost said that to a friend this morning. I think I need to get up and do that housework that needs doing. I will be back later for the Caregiver Chat of course. No more sitting here thinking blue thoughts on a rainy day.

Jeri, I am glad you come to chat and catch us up there. Yes, if it had just been my Mum at home we would have had a similar scenario. I think it is partly the lack of conversation, I know i remember more when I have been talking it over with someone else, and partly the ageing brain. Does he do a lot of talking at "Daddy Daycare"? Ask if they will make sure he has as much stimulation as possible in the language area and maybe you will see a difference. A lot of quizzes and puzzles so he is using the memory part of his brain.

Kelli, my call too, ask for the expenses, you have no income he does so it is his place to reimburse you.You are doing the best for your son and I'll bet he loves your company and that will pay off in the future when he brings home the grandbabies...lol.

So good you feel as if you are back to the "old you". Let's hope that feeling lasts. Sue. :clap:

Sounds like the two of you were a real hit at the conference but what a wonderful staff, so friendly, warm and accommodating to you both. Well done Lydi and Cookie.

Terry,great to see you back on here. Glad you had a good cruise, maybe I will put some cruises on my bucket list.

Nancy I hope life comes right way up for you again soon. We all go through some of this but you seem to have been there for a while now. I walked a desert road for a while and in the end the fog just seemed to slowly clear. I have no advice just a (((hug))).

It is always good to have someone back to update us on the life they have now. I have been here since 2005 so you would be someone who's blog I would have commented on previously. Welcome back to the Blog Community.

Yes, it does take courage to go on believing the best is yet to come when the setbacks occur. But the journey we have done tells us that it is that courage, combined with patience that allows us to keep hope live. Whatever happens is the right outcome, what is best for everyone. (((hugs)))

Looks like wonderful place to leave behind the winter snow, mind you holidaying in Australia with our glorious Christmas plus summer takes bit of beating...just saying...lol.

Good report David, glad there wasn't too much damage,aches and pains are the usual result after falling but do fade with time. Do be careful but don't be worried is my advice.

Ray's swallowing declined when he had had chest infections, he was taught to do the double swallow so he cleared the top half of his throat, to swallow with his head forward not back and to take tiny sips of water (or thickened fluid) if he thought he had not cleared his throat. It seems very complicated I guess and very tiring. But after while he usually got some more function back until close to the end of his life. Julie, you are there for him and that is what matters.

Last Thursday I had a dramatic incident. I came down the back of my house block carrying one of the planters and stood on the upturned prongs of an old fashioned metal rake. It went into my foot through my shoe. I sat down and cried with the pain, yelled “help” to see if anyone would come and then decided I had to do something about it. I weighed down the rake with bricks and slowly pulled my foot off it. Ouchy! That was painful. I rang my daughter-in-law and she advised bathing it in salty water for half an hour or so, then going to the doctor the next day for a tetanus needle and antibiotics. Good idea. So I did that. He said not to drive for few days and he was right, not good if you can’t put pressure on your right foot. So I was housebound for several days. Only felt as if I was safe driving today, one week later. Of course bad things never come singly do they? If my answers to blog have seemed strange it is because I have had computer problems. One stuck key. It is strange to try to write sentences without an “A” in it, really strange. I tried writing only words that do not have it in and then worked out that I could use the spellchecker to give me the words I needed. I went to computer outlet today and the only solution was to buy another keyboard and use that attached to the laptop, awkward but doable. It was one solution I suppose but not the one I wanted. So here I am trying to put my life in perspective. Things good and bad about this period of my life. Good things include having three of my grandchildren here, Tori only one day, the boys three days. Lots of noise and laughter and interesting things to do so no sad and lonely thoughts for Grandma. Yes, Grandma does talk to strange men in the park as long as they are with their grandchildren...lol. I loved playing computer games with them and having those funny little conversations you can have with 7 and 8 year olds. They just love to share their little bit of knowledge with you. It is good to put everything else on hold for while so they can have your undivided attention, childhood passes too fast to allow yourself to miss sharing it with your grandchildren. I did too much of that when Ray was alive, when he had to be the focus of my life, so now I can catch up bit. Pity is they live so far away now. They still refer to Pa but not as often now, sad that he will gradually fade from their memories now. I have finally replaced my broken watch, I was hoping to get one for Christmas but that never happened so I went out today and bought a cheap one. It will do for while. I thought there was no sense in buying something expensive...but then who else is going to do that now? No-one here to pamper me is there? After years of looking to someone else for presents etc it is so hard to see that ”if it has to be it is up to me”...sigh. So some little problems that I had to figure out for myself. I think it will be the story of the rest of my life from now on. It is an uncomfortable feeling, knowing that there is just me. No-one else to make decisions, no-one else to bounce ideas off, no-one else to be concerned with the minute details of every day life. Of course there hasn’t been for several years but while Ray was here I was able to keep that idea going. Silly eh?

So sorry it is turning out to be such problem. You can only do your best. The rest is up to your employer to honour their promises.

Mine too Molly. Not looking good for him. Keep on doing your best for him,visit whenever you can, see if you can get friends to visit too. Every person who sees him will be extra eyes to help you out it it comes to court..

I had a boring job for a couple of years. I liked it because it was undemanding and I was doing a course of study at the time so it didn't stop me from wanting to learn something else. Sometimes boring is good. You can do a lot of thinking while doing a boring job. I'm glad you are planning a trip, good to have some more exciting goals. As Colleen said there should be plenty of help available and we will be waiting here for the blog with all the details of your adventures.

In my Lifeline training I learned I can be one of three things, a signpost, a bus stop or a wailing wall. I have spent a lot of time being a wailing wall. I have cried with a lot of people. In my training days I cried with each member of the groups I trained. We all have a sad story in us, that is the touching point for all of us who are caregivers, the place where we can identify our own pain and in doing so feel the pain of others.It is in feeling the pain of others that we can be of some use to them. We too can become a signpost, a bus stop, or a wailing wall. I think we all know what a bus stop is, the best way of seeing it in a way is through the movie "Forrest Grump", a bus stop is a place to tell your story, not wanting or needing any feedback, just telling it as it is each day. I have been a bus stop but it is not my real place to be. There is more to my journey than would be satisfied by that. But a lot of people have been that other person on the bus seat to me and I thank them for that. I did not have the best childhood but I did have one that taught me a lot. In my innocence I skimmed through a lot of things that would have caused others to go under. I had strong parents and that helped me to be strong. I lost one of my best friends when I was nine and I learned to grieve, I learned about bad things happening to good people when a friend of mine was attacked, sad to think that bad things happen to children but ignoring that fact does not make us stronger, it simply makes us more afraid. To be in touch with reality makes us much more able to cope with the bad times as we see the bravery and courage of others in their own suffering. I had parents that struggled to make our lives better. We were migrants and came to Australia with very little. I started work aged eleven when my parents bought a small business and I got to work in it after school and on weekends. I knew that it took all of our efforts to go onto the next stage in life, home ownership, enough money to be comfortable and I had to be a part of that plan. I didn't resent it until I was in my mid-teens up till then I thought it was just what families did. In my mid-teens I suddenly realised others did not have to do what I had to do. But it was still a good lesson for me. I was lucky in my choice of life partner, Ray was a good man. We had 22 years of married life together before his first stroke, then the in between years when we both worked and then the major strokes in 1999 which retired us both. Some of those caregiving years were hard but I got to meet a lot of brave people in that time. Right from the first day Ray went to Bendigo Hospital I learned to appreciate those around us, the professionals,the helpers, the patients, the other significant others who were there as support. I lived in the old nurses home for six weeks and got to be friends with the other women staying there. We all returned after visiting hours and cried ourselves to sleep. I listened to their stories and saw my own anguish reflected in their eyes. I learned to be a caregiver by being surrounded with caring people. Ray transitioned to Woy Woy Rehabilitation Unit and for the first time I realised that this was "forever", not realising how long forever would be. Twelve years is a long time to care for someone 24 hours a day but it wasn't a hard task, you just do that kind of thing one day at a time. For the first time I realised Ray had a mantra: "there is always someone worse off" and in rehab we certainly saw the battlers. One man, Larry, stands out as the real hero, eleven months from the brain stem stroke to walking out the door. Bravo Larry. And those younger than Ray who didn't make it, just couldn't do the rehab and get back home again, so sad. It took me till May 2005 to find this site. By then I was desperate, fear of future strokes dominated my life, why did Ray keep having two years of recovery and then another stroke? Where would this all end (I know the answer to that now of course). So on I came, looking for help, support, information, some fellow feeling, people who would reach out to me, and of course that is exactly what I found, all of the above. And bless you all who were here right from the first, hoststephen, Denny, Bonnie who is now on a widowed site that I belong to, Jean, also on the same site, Fred, and of course thank you to Steve Mallory the founder of the site for being here and for making this site available to people like me desperate for answers. And did I find answers? yes and no. I did not find the magic bullet, the charm that would turn my stroke affected husband back into the man I thought he should be. Instead I found a path to acceptance of how he was and a whole community of people who would support me when I went weak at the knees and knew in my own strength I could not hold on any longer. I never got to the point of suicide but some days must not have been far from there but I would come onto here and there was another caregiver expressing my thoughts, my concerns , my disillusionment and somehow like Ray I could gain strength from knowing that there was someone worse off than myself, because I did have friends and family and a roof over my head and others did not. I became a chat host because I was asked to. I found it easy to be with people who had a common purpose, to make the most of the life they now had. I did general chat for a few years and then when caregiver chat started found a new place to be that signpost, bus stop and wailing wall. There were others there who ministered to me as I ministered to others and I have never found it an imposition, always a privilege to join in someone else's story. I was happy to be joined in the task by Sarah and Sally who were a great help to me and to know that when I was unable to be on the job one of them would take over and there was no loss of continuity. Sarah found the timing difficult but Sally is still there co-hosting with me. Thanks Sally. The Blog Moderator job came later. As a blogaholic I was reading the site twice a day anyway so it was simply a matter of learning how to write a Blog report and it all came together. What a wonder it was to me to realise that stories were not static but ongoing, that I could follow someone else's story as it happened. That way I could rejoice at the improvements, commiserate with the failures and become a cheerleader in urging others on in their journey. Thank you to all those who allowed me to share in their stories. This sounds like an ending but it is not. It is just a pause to reflect on how lucky I was to find this site, to be a part of this community and to know all of the people I have met because of that. Blessings to all in your struggle to find peace in acceptance.

Sometimes all the best advice in the world does not even work, so cry all you need, mourn what you have lost, see if you can find that one thing that will take you into a better future. (((hugs))) from Sue.

It is hard not to be driven to see this as achieving a new you but common sense must prevail at the same time. She was not your personal trainer, she was a therapist to a stroke survivor and had to take what was possible into account surely? With some of the therapists Ray had they would get that disappointed voice and say: "Well if that is all you can do..." and sigh deeply and I wanted to scream. I knew what Ray could do and not do and additional exercise causing him additional pain never seemed like a good idea to me as it is so restricting in the days that followed.

Lenny, your wife has some wonderful ideas, she knows you so well and I would say loves you a lot. Something to look forward too in the near future is always a great idea to get you through so you have some dreams to dream my friend.

George that is a big move but by keeping your ties to the community it will be easier to make. Hope you can still have a lot of wonderful summers there. I would do the same if I lived as remotely as you do, you need a few mod cons as you age. I hope this is a move that will benefit both of you and bring much joy into your life.

I am glad you are finding time to finish those UFOs (unfinished objects) and display your work. It is irritating to have a lot of unfinished work around the place and satisfying to finish them at last.