This is a blog about Ray and about me as the two of us are never seperated even though there is distance between us. Those forty years are the glue, our memories, our family, our network of friends, colleagues and supporters all combine to bind us together.
Ray has been in hospital a week now. The chest infection is just about cured although this one does seem to have a cough that lingers. Ray is looking much himself again. At this point of time it would be usual for the doctors to push
This was supposed to be my break while Ray was at Camp Breakaway but instead Ray is in hospital. He went in on Monday from Daycare where he had had a fall. Maybe he just collapsed, not clear on that one. Their reaction, definitely the right one, was to call an ambulance and send him off to hospital. He had had a temp the day before and a couple of falls but said he was okay to go and I took his word for it.
They are doing a lot of tests to see if they can find out what is causing his curre
People keep telling me I should do something with my time off other than visiting my Mum, shopping etc so I decided to do a course that was advertised as being free for Carers at one of the local technical colleges. The course is for seven Mondays from 10am - 1.30pm which means I can do it while Ray is at Daycare.
Today wasn't day one as I had thought as there was an interview day last week, but I missed that as I had the visitors etc. But today was the first full class and a very interes
On chat and in the postings on the board I encounter many caregivers who are new to the stroke scene. Like most of us they were previously unaware of stroke and the effects that it has on families. Anyone who thinks that a person in isolation has a stroke and it doesn't have any effect on those around them soon gets disabused of that theory. We are affected in proportion to our liking or involvement with the person who has had the stroke. How deeply we are affected depends on the depth of ou
Well, what a day this has been. I had such a wonderful day...and if you take the good with the bad, the good far outweighed the bad. It was a perfect day weather-wise, after a couple of days of rain the skies were clear and blue and remained that way the whole of the day. The little hall we had hired for the occassion was a good fit, enough people for it to look crowded but plenty of room between the tables so I circulated with ease. Ray sat near the door so got a kiss from all the females wh
I've been following the thread expressing the difficulties of living with invisible deficits and now Stu's new thread of wishing that you weren't carrying visible deficits that cause some embarrassment and make you the butt of awkward comments. Frankly I wish none of this had happened at all. Ok, ok, I would have missed out on you all as friends and supporters, I would have still been working and living in my own small revolving sphere but somedays I'd trade it all for ONE NORMAL DAY!!!
I
Things are changing in our house again. Ray has gone from occassional incontinence to frequent incontinence in a matter of weeks. There has been no change of medication, no change of diet or illness to indicate why this has happened. I told the doctor what was happening and he rolled his eyes. He is reluctant to talk about these issues in front of Ray so I will have to make an appointment to go and see him by myself. That will be another way of "losing" my free time - using it to visit the
Well, winter took it's time coming this year and we were all congratulating ourselves on another mild winter. But now the winds are blowing steadily from the south and the snow is falling on the Snowy Mountains and the Australian Alps and winter is well and truly here. Here I sit at my computer at the back of our house and it feels as if there is an inside frost. We only heat the front "living area" so it is quite cold here and I sit late at night wrapped up in a rug looking like a rainbow a
I've been a bit down this week. Of course I have had a cold in the nose and that is a miserable feeling. I have tried taking remedies like head-ache meds to see if that helps but whatever I try wears off after a few hours and I go on feeling like a rhinoseros.
The weather has been colder as we go into the middle of winter. It looks fine and sunny but there is that nasty undercurrent of colder air. I have all the doors and windows open today though as the house was getting a musty smell
I am thinking of lining up for the Olympics in a new sport called "Clean up". This morning , Monday morning, is Daycare. The community bus picks Ray up at 9.20am. At 9 0'clock he was ready to go out to the verandah to sit in the sun and wait for them. I went on doing the laundry. A few minutes later I thought I heard a door close but thought no more of it until I heard Ray call: "Suuuuue" . Yep, clean up time and only eight minutes to go until the bus is outside our door. I won't go into th
I have been writing a blog on this site for over two and a half years now. Sometimes I click onto "archive" and read back over the blogs expressing my past angst and frustration. I am surprised by my anxiety about something that later turned out not to be a disaster but happy to see that acceptance and even serenity is reflected in some of what I have written. By reading the comments as well I can see all those invisible hands holding me up when I was in danger of falling, Jean, Pam, Sandy, S
It would be good to say I have settled back into the routine again but so far the routine has been missing as a framework to our lives. There was no Scallywags this week, the birthday party for our grandson that we had hurried home for didn't happen and today it is cold and windy and I guess the weeding of the garden will have to wait.
I did my chat hosting Wednesday morning (Tuesday night Caregiver chat) and it was good to catch up with a few people who are regulars on chat as well as a f
Only just home and it is after midnight. I am happy to be home but sad to have to leave my northern family behind. Ray and I had a nice time, quiet but surrounded by family. It was good to be with the grandkids in the midst of their everyday lives, to catch up with all their news, see how they've grown, have the time to sit and share a story or a joke or just play "bouncy ball" for a while.
We did do some special things, we ate out, went shopping, walked along the beach in a couple of sp
Well, why is it that as soon as you think life is settling down it speeds up again? I have been cleaning, washing, tidying, to get the house ready to leave. Add a lot of cooking/freezing to do as all of a sudden everyone is leaving me vegetables and of course I have to process them all before I go away. At least now there will be plenty of lovely soup in the freezer for those "too tired to cook" nights when I get back.
I am having some more trouble with the care provider. Why do they em
I went for a walk around my neighbourhood this morning. I do a walk on Tuesday and Thursday morning when the shower nurse is with Ray. The walk varies from 20 to 40 minutes depending on the weather, how long after Jeff comes before I left home etc. As I walk around my neighbourhood I think of the people who once lived there. The girls I grew up with, the young married couples we knew before we went off to the country, the teenagers our kids grew up with. It is a very pleasant way to pass the
Somtimes I am really dumb. I think I have listened to what a person has said but I haven't really heard them. Tonight Ray was asking me a question. Now he doesn't have aphasia but the dementia seems to be slowly robbing him of some language skills.
"What happened to the orange thing?"
"What orange thing?"
"The orange thing you took."
"The orange thing I took from where?"
We did this for a while before I realised the "orange thing" was a half eaten candy bar that I had
A recent survey in Australia has put caregivers as a class, both professional paid workers and unpaid family members as the group with the highest stress of any job, paid or unpaid. I guess I am not surprised. For me it is the constant nature of the job. There is no end to the chores, no point at which I can say: "there, I have done it, that is that finished for now." and walk away, like you do in any other job. Because I am only one person looking after a person who probably needs three or
Yep...I am back. Due to a lot of unforseen circumstances both mechanical failure and ISP orneriness caused me to be blacked out so Trev set up a new ISP and late this afternoon I finally got access to the internet again. Like a boomerang you can throw me away but I'll finish up at your feet or hitting you on the back of the head! So watch out!
What has occupied the past week or so? All sorts of things - doctor's appointments, hair cuts, the usual round of engagements that forms the framewo
I don't know how many of you have dealt with having carers come into your home. This is my second time with that as I had carers for Mum and Dad when they came to stay a week and stayed 4 months for both of them and 2 1/2 years after that for Mum. So I had a shower nurse twice a week for Dad and some help when he needed transporting to radiotherapy or had other specialists treatment for his cancer. And when he died I had a four hour minder once a week for Mum. Without that and the respite she
This is the Anzac day long weekend here in Australia. Friday was a public holiday to honour all our past service men and women, particularly those who lost their lives in wartime service. We started off by remembering the Anzacs, the Australian and New Zealand Army Corps ( and all the other forces) who served in the First World War. And then along came the Second World War, and Australia has been involved in many other conflicts since then. So I guess Anzac Day here acts as Rememberance Day
Because of shows like "Oprah", the "Rikki Lake" type shows I guess there is a feeling that everyone shares their ups and downs and some people share their most intimate details until you want to say " too much information!" But that is not the way it is right across the world. In every situation there are those who are happy to open up their lives for all to see and those who are quiet and withdrawn and keep ther lives and their thoughts about it to themselves.
In England a person might s
Getting Ray from respite and bringing him home is the easy part. It is then settling back into routine that seems so hard. After all I have had "freedom" for two weeks. Freedom is something we take for granted for most of our adult life, it includes self-determination, freedom of speech, movement, the right to choose our own way of life etc. A lot of that is taken away from you when you have strokes or start to look after someone who has had strokes.
Ray has always been described as "ea
I'm home. Funnily enough it is hard to take in that I am really home as Ray will not be home until I pick him up on Monday. Of course it is nice to be home but I did have a good time while I was away and left a tearful family in Cairns this morning so not home and relieved to be but with part of me up there with them still.
Trev picked me up at Sydney airport after an uneventful three hour flight and it was out through the Sydney CBD clogged with Friday afternoon traffic, slow...slow...sl
Only three days before I go on holidays. It is a bitter sweet preparation this time. In one way I am looking forward to it, the family reunion with my daughter and grandchildren, that is a joy. There is the peace of mind of knowing I can rest in bed of a night without one ear open, not having to hop out of bed and start the day whether I want to or not. On the other hand it is hard to know how to prepare. Am I going into heat, humidity and rain or balmy autumn days? Hard to tell until I ge
"Looking after Ray is getting more time consuming and I can see how people become prisoners in their own homes. It is sometimes easier to stay home than to keep putting pressure on yourself. Ray is happy on his verandah and going out is not always what he wants to do but I am the one who needs the social contact, without it I would go mad I am sure."
This is a quote from a letter I just wrote to an old friend. And it is the truth. It is getting harder and harder to get Ray out now. Tod
