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About this blog

still sorting life out

Entries in this blog

 

the time between

Most of you know that Ray died on 19th September, late in the afternoon. I haven't got the death certificate but likely cause is the pneumonia he couldn't get rid of plus a lot of other factors. As we all know Ray has been seriously ill for some time. I had been with him most of that day and the three days before but had gone home to have a shower and come back. A nurse rang for me to go back but he died before I got there. I was relieved as he had been struggling to breathe, for two days ha

swilkinson

swilkinson

 

Mum's gone to Heaven now

So much has happened since my last blog. Looking at it now it seems as if all that happened months ago but it is only a week ago.   My Mum died on Tuesday morning 5.20 am. She is finally at peace. I am glad and sad at the same time. I was with her all last Sunday afternoon and most of Monday. At 6pm on Monday one of the nurses told me to go home and get some rest. You can imagine how that didn't happen! As if I could sleep with her so close to death. At 5.30am Tuesday morning the phone ra

swilkinson

swilkinson

 

He's Home!

Ray is home. We've had our first fight already so some things haven't changed...lol.   I picked up the quad stick at the "lending store", the hospital provides it free on loan for three months so he shouldn't need it after that. I got lost because it is up the back of an old industrial estate, waaay up the back. But still I got it. I've also borrowed a narrower shower stool but have decided to have the little store room next to the toilet made into a shower room anyway. That way there is

swilkinson

swilkinson

 

we are going through a difficult time

Sometimes when asked if I want to go back to …whenever... I say “No, I’m fine with where we are now”. But today I just want to go back to a few weeks ago. Anywhere back to where I was standing on that last plateau thinking things had finally settled down and we could maybe do some planning again….   Ray and I went down to visit our family on the south coast, he was well for four days but had a “possible” stroke last Monday (30th May). Our doctor said that was the likely cause of the instab

swilkinson

swilkinson

 

Mixed news

It is a little hard to write this blog for many reasons.  One is that I don't have a working computer and am typing this with one finger on a tablet, another is that I am not feeling good about life right now. I went for my four months check up today and by the way the radiologist spoke all is not well. So I go for more tests next week.  I just hate it when a medical professional pats my hand and calls me "dear" as that usually means there are problems ahead.   I had a good Christmas w

swilkinson

swilkinson

 

waiting just waiting

It seems like a fortnight since last Saturday and it is only five days. Ray is still in hospital, still in bed or on the chair beside the bed, still not walking or weight bearing. He is still undiagnosed as the xrays have been "inconclusive". So more tests have been ordered, still a bone density test to go.   Today they had a second try at the nuclear scan but when I asked the nurse when we will get the results she replied: "Thursday afternoon, Friday morning, maybe." Seems it is all done

swilkinson

swilkinson

 

sitting on the pity pot

I have borrowed one of Sarah's (spacie1) sayings for my title. I have just been chatting with her and I know Gary is so much worse than Ray and yet I was pouring out my troubles to her as if she hasn't got enough of her own without the burden of mine. But I sure need to tell someone exactly how life is for me somedays, without the sugar coating, without the :"I'm fine thanks and how are you?" and without the blank look that comes over a non-caregiver's face when you tell them the trials you face

swilkinson

swilkinson

 

rejoining the world

While I was in a daze for most of the last two months because of Ray's death I won't mourn for Mum in the same way. My mother was scornful of the sorrowful, she would say: "Look at them sitting there with long faces." so I will not mourn her. I will try to be as philosophical as those people who tell me "she was old" ( I know that), " she is in a better place" (I know that too) and she wouldn't want me to "sit around with a long face" (true). So I am trying to rejoin life again.   I have j

swilkinson

swilkinson

 

friends indeed

The end of week one of Ray's hospital stay saw very little progress made. He had eight xrays and scans of various kinds to get a diagnosis. The hip joint on the left side, where he already has the hip pinned is cracked across. I guess that means an operation but so far no-one has said they will do it. The orthopaedic specialists will consult tomorrow and I hope one brave one will agree to do the operation.   If Ray cannot have the operation we look at the worse case scenario: Ray spendi

swilkinson

swilkinson

 

Hurray for Ray - he's in rehab

It finally happened. Last night around 9.15 pm I got a phone call to say that Ray was in the Rehabilitation Unit that produced the miracles for him in 1999 after his major strokes. Then he spent three months there and went from being a stretcher case to walking out on a walking stick. I am hoping they can repeat the miracle and put him back on his feet again for me.   It is 18 days since the fall that broke his pelvis and fractured his acetabulum ( left hip joint) and so far he has had ver

swilkinson

swilkinson

 

bad thoughts

Funny how easy it is to tell someone you don't expect things to be perfect. "Of course" you say, smiling graciously, "I don't expect things to be perfect." What a dissembler I am. Of course I expect life to be perfect otherwise why am I even mentioning it?   Had a couple of not so good days. A friend let me down. It may have been a misunderstanding I suppose, as even face-to-face communications isn't always straight forward. She had asked our son to go and help with a BBQ at her place to

swilkinson

swilkinson

 

bare arms, a feeling of Spring in the air

The birds are going mad today, lots of puddles to bathe in, green grass, plenty of worms near the surface so lots of birds out and about. Plenty of nest building too as I have seen the smaller birds flying around with dry grass or twigs in their beaks, and several of them are squabbling over a favourite tree for that, my paper bark tea tree out on the front footpath.We were given the weather forecast today of another wet day and low temp but Mother Nature mustn't have been listening as it is sim

swilkinson

swilkinson

 

An award for caring

Ray and I joined the WAGS (Working Age Group for Stroke) in August 2006. Ray had already joined the weekly at that time discussion and lunch group for men called Scallywags and was enjoying the male company. When a man has a stroke and has to stay home with his partner he can really miss the kind of company he found by working so Ray really enjoyed meeting with the other Scallywags. I just enjoyed the time to myself as at that time I didn’t have carers coming in and Ray and I were together 24/7

swilkinson

swilkinson

 

Living on angel time.

I went to see the neurosurgeon on Tuesday. I was interviewed by a young Asian associate doctor and sent for a 3D MRI and angiogram, a brand new way of showing  the blood supply within the brain. The results were given to me by the associate and then I saw the specialist. It appears the aneurysm is larger and deeper than previously thought but at my age they are not going to operate as it would mean a full brain surgery. Coiling, one method of dealing with an aneurysm, is not an option. I think I

swilkinson

swilkinson

 

degree of difficulty

Ray and I went for our bus trip today with the WAGS (stroke support) group. It is the first time in fifteen months Ray and I have been on a bus trip and in a way this was a test run to see if going on a bus/coach for a day trip or for a few days break is possible. Well, from today's experience it is not an option any more. But then I should have known that as soon as we did the pick-ups and I realised I was the only caregiver pushing a wheelchair.   The trip went to a historic house the oth

swilkinson

swilkinson

 

holding pattern

Ray is back in the main hospital for a couple of days while his arrhythmia is checked out. It may be nothing major but like arterial fibrillation it is known to throw clots and cause TIAs so they decided to look into it. He had a routine blood pressure and pulse check yesterday and he was way beyond normal. He was taken to the major hospital last night but put into emergency care for 24 hour observation only. If he has a further episode they will re-admit him but this time to coronary care.

swilkinson

swilkinson

 

where is my peace of mind?

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

swilkinson

swilkinson

 

a tough decision

The past few weeks since Ray has been back in hospital have been awful. It seemed as if each day I got some new bad news. This is wrong with Ray, that is wrong with Ray, his behaviour is worse, he is having hypos through the night, he seized one of the nurses by the arm and wouldn't let her go.   I can only take so much bad news in. In the end I wanted to say: "So deal with it!" Instead I took on the guilt of a mother with a child who is misbehaving at school. In the social worker's interv

swilkinson

swilkinson

 

more seizures

It seems we have come to a new turn in the road. Ray had a serious seizure on Tuesday and fell off the shower chair. It took four women (no men available) to right him and get him onto the lifter as he was only semi-conscious and in an awkward position under the hand basin. One was very worried as it was her first "lift". He spent the rest of Tuesday and all of Wednesday in bed.   Then he had another attempted fall and possible seizure today and again in the bathroom but this time one of the c

swilkinson

swilkinson

 

remembering to breathe

It is two weeks today since the funeral. My daughter and family are still here and go home tomorrow. Then the house will be quiet and empty and I will learn what it is like to cope with that for however long I need to. I still have that moment when I look at the clock mid-morning and say to myself: "Time to go and see Ray". It is like an automatic reflex and remains programmed into my brain. I still listen for his breathing in the night come to that and it has been well over a year since he

swilkinson

swilkinson

 

reflections on grief

I can't believe I had three phone calls today telling me why friends were not at Mum's funeral yesterday. Forget it friends, you were not there. But Mum was 94, had been out of circulation for twelve years and so I was not surprised that only fifty people came. Really only four of her friends, my church friends and mine and my sister's families were there. So today why do I need to know who was not there, well I know that already, and why? Just send a card folks, that is all you need to do.

swilkinson

swilkinson

 

the third draft

I have finally ( I think) found a more peaceful place. I went to the old support group at Mum's nursing home and spoke about beng a widow and did not cry. I think that is progress. I think going to the grief counselling has really helped. I can now articulate what I feel and not get choked up. It was good to experience that today. One dear lady whose husband died about the same time as Ray still sits with a handkerchief to her face and cries for the hour. She is older and is lost without

swilkinson

swilkinson

 

How long is forever?

This afternoon I went to the Lymphoedema Clinic for the first time, I was anticipating getting some of my most pressing questions answered. I had done what everyone does, gone to Dr  Google for my answers about the relationship between lymph node dissection and lymphoedema. Most of what I found related to breast cancer but that is understandable as the breast cancer girls pioneered the use of lymph node surgery. I am very grateful for that and the surgeons who pioneered the treatment.  

swilkinson

swilkinson

 

A new adventure

I have just been on a cruise. The last time I went on a cruise I was  twenty and went to Fiji and Tonga, we can't go from here to Tonga any more. This time I went to New Zealand. I shared with the sister-in-law of an old friend, the old friend and her husband went too. Also on board were two couples from the Stroke Recovery group WAGS that I still belong to.   It was good to have other friends on board and I did spend quite a lot of time with Bill and Jill. Bill was on his scooter. Bei
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