Well Mothers Day is over for another year. I was fully booked doing the three church services plus Messy Church so I knew I would not want to do the traditional " it's Mothers Day so we will have a BBQ" day.I was busy all day from 8am with church events except for over the lunchtime period which I spent with Ray. I had hope for my grandson Lucas to come to Messy Church as he loves it but apparently he was out-of-sorts after a busy Saturday plus breakfast and lunch with his Nanny so got to spend
When I got to the nursing home today the assistant to the physiotherapist came to see me and said she was concerned about Ray's right shoulder as he is again complaining of pain there. I told her about the episode ten days ago when I found him leaning over with his right arm draped downwards and his hand reaching the floor. She said she knew nothing about it so it either wasn't documented or not brought to her attention. She said she would look into it. She came back later and asked to borrow
Behind a lot of our old fashioned Pubs was a beer garden. Sometimes this was just a few chairs and tables and colourful umbrellas to shed a bit of shade, sometimes a covered area that might include a BBQ , sometimes a well-planned, shaded area with swings for children as well as chairs and tables, a garden and some ornamentation. Sadly all of this has often been allowed to fall into disrepair with overgrown gardens and rusty broken furniture.
As non-drinkers Ray and I would still in our you
I've just read some blogs from April 2006, six years ago, I have been blogging since August 2005 here so if you want to read back it will take you a while. Six years ago Ray had slight signs of dementia, was finally doing his leg exercises and we were doing quite well. We were looking forward to a new grandchild (Alex born in June 2006) and Ray was off to Camp Breakaway for three days to give me a break and the opportunity to have some "Sue time".
As usual at the end of the blogs were the
With Ray in full-time care now I face a lot of events that are beyond my control owing to policies of the facility in which he lives. For me as a former full-time caregiver and now a supervisor of his in-residence care I am having to learn a whole lot of new diplomatic skills to deal with new situations.
I have laid down a policy for them to follow on all sorts of circumstances, what to do if he has a bad virus, what to do if he stops breathing (yes, do send him to hospital) what to do to b
When I went into the Nursing Home today I heard a voice say: "Hello Susie Q" and I took no notice. then an arm came around my shoulders and I turned around to see an old friend of Ray's from his early days in Lions. It was good to get a hug from an old friend.
When Ray joined our Lions Club he was the second Ray so the two Rays were known as Ray W and Ray T. Then a third Ray joined and he was also Ray T, so they called him R T2. The three of them then got known as R1, R2, and Ray became R3
My computer closes down every twenty minutes, everyone says it is a virus but that doesn't help. I switched it off for a couple of days, I simply couldn't deal with it. I need it as a lifeline to the outside world, to my friends here, to my email pals, just to stay sane!. I am frustrated when it does not work.
After three weeks without a seizure Ray has had two seizure days in a row. Last night the aides dealt with it, the night before they called me in and I was there for two hours work
Ray has not had a seizure for over three weeks, hopefully because the medication has reached the therapeutic level. He did have two days in bed last week due to a bladder infection. I think that was down to the catheter though as they finished up taking it out. Today when I visited him he had that spaced out look which is more frequently his expression now. I note the changes in him and try to keep optimistic, I know I can still enjoy the day and not think about tomorrow.
The not so good
It has been ten days without a seizure for Ray but he just had two days in bed because of a bladder infection caused by the catheter. It seems as if he goes from one type of illness to another. I guess his immune system is compromised. Wish there was a simple treatment that would fix all this.
I now spend three hours and sometimes more a week with Mum. Sometimes the visits are short, sometimes longer. I just sit with her, engage her as much as I can. To me she is who she always has be
I hope you don't mind if I moan about the weather. It is raining again. It has rained most of the week. Today is Saturday and it is wet and cold and most unsummery. Oh wait, we did have two hot, humid and awful days, with thunderstorms and I complained about that too. Roll on autumn, a season where the nights are cool, the days shorter but pleasant...or is global warming going to interfere with that too?
The last couple of all day seizures have made a difference to Ray's alertness. Sin
This week has been an odd kind of week. I have had a few social activities and that has been good. I went to the Lions dinner and that was a pleasant evening. I am looking to doing a little more volunteering with them as soon as life settles down. I am still a little tentative with what I do there, it is strange being a "single" rather than Ray's caregiver, I guess I will get used to that eventually. I went to the Apex40 dinner on Thursday and that was good too. I feel more at home there a
Just thinking that a lot of issues I am going through are similar to others who are newly "separated". It is illness that has separated Ray and I in our case but I don't think the reason matters, the resulting loneliness and change of roles is still a factor.
Today I decided to change the bedrooms around. I remember the angst I went through when we got rid of the double bed bought by my MIL when we got married and changed to two single beds pushed together. Now they are going into the mid
Ray is back in his nursing home again. He didn't get out of bed today as the head nurse wanted the physio to sign off on his suitability to be back in his wheelchair self-propelling again. As the conclusion at the end of his hospital stay was that he had had a bad seizure, or maybe a series of seizures he should not have to be signed off, after all there shouldn't be any significant changes to his cognition as there would be had he had a stroke - should there?
I found the days long in the
Must be that time of the year! We had about a week of rain, it flooded my phone junction box and on Thursday night my phone line started a loud buzzing noise and my Internet went down. So no Internet - no phone. On Saturday morning I was sitting in a stroke support meeting when a receptionist approached bearing a phone and it was news from the nursing home - Ray had had another collapse, maybe a stroke and was on his way by ambulance to Wyong Hospital. Wow! was that a blow!
So off I went
Did you miss me? I missed you all. Especially those who meet in Tuesday night's Caregiver Chat and all my friends in Blog World. I am just back from my little getaway. For most of it I was a long way from where I thought I would be, on a rural property on the Southern Highlands, not on a busy road running alongside Lake Illawara. It all turned out much different from what I had planned. I thought I was going down to mind the grandchildren for the last week of the school holidays to let their p
No chat today so this is a blog to add comments to about what you are facing today. Remember it is a public blog so others can see it.
I am sorry that this is happening right now as I know it is frustrating not to be able to meet up with your friends in this way.
My today is a hot one and I have a lot of clothes flapping on the clothesline. Edie has been having a lot of trouble with blood pressure during this pregnancy so she is at Prenatal Clinic today and then goes to work, Trev is a
Tonight was the first Lions dinner of 2012. It is usual to pay your fees at the second dinner in January so members were lining up to pay. Suddenly I realized I have to either pay for another six months for Ray or write a letter of resignation on his behalf. How very sad, another thing that the combination of strokes and dementia has taken away from him. After 28 years of being a member, and a very active one at that prior to the 1999 stroke, there will be little chance of him even getting b
This has been a mixed week. I think I got a touch of the virus that Trev and Edie had as I had a couple of days of aches and pains and dragging myself around. It has been doing the rounds and I hope it has left for good. I also got a few mosquito bites and I guess they were swampies which I am allergic to so got some large painful areas and that ruined my sleep for a couple of nights.
Edie, Lucas and Trevor are moving out again at the end of this month. They have found a rental house tha
January for me is “Reading Month”. I adopted this in the ‘90s when I was working full-time and studying part time. No study from early December till early February so in January I caught up on any books I had put aside to read. So if I am sitting down and obviously not doing much and someone asks what I am doing the reply is: “It’s January so I am reading.”
I think it is the little things that keep us going in life. Taking time to do our own thing whether it is gardening, reading or playi
Christmas was the final straw I think, too much work, too little return as usual. I don’t know why our family must do it all, Christmas Eve, Christmas Day, Boxing Day all seemed full and Trev and I had a big argument this morning. I guess we have tried too hard to play “happy families” when we have a feeling we are all on the edge of a Black Hole.
To me, with Ray in care now, it was a real effort to do family Christmas when all I really wanted to do was sit and cry for Christmas’s past, fo
This is my first year with Ray in the Nursing Home; he went into care in September though he actually left here on 13th June to go into hospital. I wrote letters in all the Christmas cards to say what had happened, where he is, what I still do for him etc. I was not surprised when the cards came back addressed to me as only my name was on the back of most of the ones I sent out and I finished "from Sue" or "love from Sue and Ray" as I think Ray would express that love if he could. He really can’
I have received a lot of Christmas cards this year. I send out a lot so I get a lot. Most people are polite and send out a card in reply to one they receive. In the cards I sent out I said Ray had gone into a Nursing Home now and briefly outlined the traumas we had been through. None of the cards I received expressed concern or sympathy at our life changing circumstances; even cards from close family were simply signed “Love from xxx and xxxx”.
I often wonder about the value of the cheap
There is always bad news this time of the year. It is in the media and on the news. It is in the Christmas card from the person you didn’t receive one from last year. A lot of people just can’t manage to send out cards the year of the serious illness or family death so you don’t know about it till a year later. The news may come by phone or even be told to you by a third party. It all seems so much worse at Christmas time too. Why is all this bad stuff happening in the season of good will an
Life is very demanding with all there is to do before Christmas. Today I was on ticket selling again for Lions in the shopping centre and I am back there on Thursday doing to same. I am fitting in visits to Mum and Ray and all the other things I have to do between that and the pre-Christmas get-togethers for the groups I belong to. Most are simple afternoon teas but I still like to attend as we break now and don’t resume again until February.
My middle son just added to my busyness by aski
There has been no health crisis this week for either Ray or Mum. Last week we thought we were going to lose Mum and at her age, 93, and in her state of health that is to be expected. I don't want her to leave suddenly, I know she won't live forever but I do love her heaps and she is an essential part of my life. I don't want to lose Ray either. I know that is a selfish attitude in a way but it is the way I feel right now.
I visited my Dad's grave today. I just do that from time to time.
