Sometimes in the past people have seen me as something I am not – a cross between Wonderwoman and Mother Teresa - saintly, selfless, able to do more than most people, fully able to cope with whatever comes along. And of course I am none of those things - I am just a person doing what she can for whoever asks for her help. At some personal cost, as all caregivers and nurturers realise but I’m happy to do it anyway. It helps makes some sense out of all the experiences I have had.
Now I am a
I had an interview with Ray's doctor today. This came about because he wanted to do some further investigation of Ray's condition and wanted some input from me. We had a deathbed scene last Tuesday, a two and a half hour period of Ray being only semi-conscious and that frightened us all, I don’t want that happening too often.
The doctor said there is not a lot he can do after a series of what I think could be seizures but he is calling brain infarcts now. Whatever they are called it seems th
This weekend I have been with 18 wonderful women (25 if you include those who just came to dinner on Friday or Saturday night). This was the first WAGS Women’s Weekend I have been able to attend in full for some years. Perhaps this time I was able to attend because I no longer have full responsibility for Ray and to tell you the truth I felt a bit strange about being there. But although I am no longer a hands-on, full-time caregiver I am still overseeing Ray’s care. But I do see life from a
Ray had the heart monitor on on Monday. I was glad the staff said they could manage it in-house. After all that is why Ray is in the nursing home and not at home - they have NURSES there!
Late Monday afternoon, as the staff was waking him from his nap he had another seizure. Once again they applied oxygen and after a while he came out of it. The charge nurse rang me to tell me it had happened but not to worry as he was fine now.I am hoping the heart monitor picked up the changes in activit
I've been moping for a few days. I am still trying to come to terms with what is happening with Ray and the fact that the days of he and I living together are over. When I sit beside his wheelchair in the courtyard at the nursing home some days we could be back here sitting together on the front verandah as we used to do. But then I look at him and I can see the changes, the pouting lips, the dribbling, the increasingly vacant look. All signs that more brain damage has happened.
I try to
This morning I found it difficult to get out of bed. Not like me as I usually spring up and out, ready for the day. Twelve years of caregiving and always the alarm went off and I was up! Of late I have the alarm on the morning news and just lay back and listen to the headlines for a while. I know that I am stalling but it seems as if this is a part of my life now.
I find the nights the hardest to cope with. In the day I am busy, outside in the garden, inside the house tidying, sorting o
I’ve just had a few days away with friends. The holiday was booked at the beginning of this year and if Ray had been home he would have gone into respite for a week or so in order for me to go. It was a seaside resort with cabins, caravan sites and tent sites about two hours up the coast from here on a beautiful bay. Our club mainly took the cabin option but some brought their own vans.
Trevor said all would be well as he would monitor my messages, collect my mail etc. I left several contac
I have been packing up my house so that Trev and family can move in. Originally they were coming to help look after Ray but when Ray had to go into care I decided they might as well move in anyway. They want to save a decent deposit on a house and I want them to be able to do that so it is only supposed to be a twelve month’s arrangement. Trev has been so good to Ray and I and it was partly due to his help that I was able to have Ray at home for so long. I feel as if I want to do something t
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
I had a bit of a meltdown and left chat abruptly today. Those participating in the chat were as usual talking about the difficulties of caregiving. Okay I know all about that, but it is no longer today’s concern. My new concerns for Ray are different. What to do about his new conditions, whether he is on the right medications, whether the staff are giving him enough fluids, is he getting the right food, cut up the way he wants it etc.
I am having trouble reconciling being a caregiver with
I am still trying to decide where to put Ray into permanent care. Where Ray is now is good for the stage he is currently in, where he can use his good leg to self-propel himself around in his wheelchair. He has access to the gardens straight outside through the French doors in his shared room. His room mates often open the door for him. Where Mum is you have to ask staff to be able to go outside.
The ancillary staff members have shown me where to make myself a cup of coffee now so I can hav
I’ve been away for a few days and Trev got to sit with his Dad in hospital on Sunday when Ray had another seizure and the nursing home staff sent him to the nearest hospital for more blood tests. He has to have his seizure medication increased. Today they gave him a “whiff of oxygen” to get him alert enough to get up out of bed so looks like things have changed again. He has been through so much this year and yet he still has a smile for the nurses.
I have just got back from the south coa
Lots of smoke in the air for the past week so everyone was talking about the summer bushfire season and how the undergrowth is drying out – so we while we are distracting ourselves with that we get a FLOOD!
I was getting ready for church yesterday when the light rain we were having suddenly turned to a downpour. No worries, we’ve had plenty of those before. Then the rainpour seemed to increase and increase until our backyard was a sheet of water and the road was a river. Then the gutters
The past week has been one of frustration on many fronts. I lost the internet for a week, partly due to my Telco who claimed it was my modem (also true) and the person who sold me the WRONG modem. Lots of days of trying to sort out the problem and the solution finally came when Trevor once again got his old computer up and functioning and here I am again on a dinosaur when I need to email, blog etc.
Ray has regressed not progressed this week with the sudden appearance of spasticity in his
In order to get Ray to where we want him to go and not get stuck in the system we had to take a temporary placement in another facility. I have emphasized to Ray that this is only "respite" which is true as they are only charging me respite rates (daily payment). He can be there for up to three months while we wait for a placement at the facility where Mum is.
It is difficult getting used to a new place. Ray is not yet used to where his (four share) room is, where the dining room is etc. A
This weekend was a turning point in a way. On Fathers Day Ray had a visit from three people, Trev, Lucas and myself. We all came in the one car. As a present we brought Ray a thick shake which he was able to drink with some minor coughing and that was our celebration. We bought Lucas a kids meal and he ate that while Ray ate his lunch so I guess you could say we had a meal together. No big backyard barbecue, no family gathering, no little ones running around or bringing gifts for "dear Pa".
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
I keep saying this idea of bringing Ray back home is do-able but now not so do-able as I'd hoped.
I just went into Gosford Hospital for what was supposed to be an evaluation interview. Only the doctor turned up to it in the social workers office. I took Edie with me as my back-up as Trev has a really nasty dose of flu so we told him "bedrest and warm drinks" and left him at home.
The doctor was a young Asian woman and really explained Ray's conditions well. Unfortunately he now has two
In our lives we talk to many people. Some responses are very trivial, like exchanging words with strangers, some are very deep and meaningful like sharing with a loved one the thoughts from the deep recesses of our heart. It is a sharing that is precious, meaningful and RARE.
Part of the problem with our modern life is that we now share with everyone some of the deep meaningful messages when we should instead be sharing the words of exchange. I am thinking of Facebook here of course. I p
I decided to see Mum this morning before I visited Ray and I was so glad I did as she was in a delightful mood, all smiles and beating time to music. They have a radio in her shared room now and she was bopping away to the song "Wild,Wild West" half laying in her chair, her hands and feet beating in time. I so well remember her singing and dancing around her kitchen to a favorite song on the radio so it was like dipping into the past when she was young and happy and lively.
The sun was out
We are back in a holding pattern again. Ray is happy enough lying in bed in a surgical ward in our major hospital. He gets food and his bed changed and a little attention from the nurses. I don’t think he likes it as much as the little hospital locally as there is no-one wheeling him out into the courtyard to get some sun on his feet, no-one bringing him magazines to keep him amused. The little hospital is more in nursing home mode as most people are waiting to go on to the nursing home and
The wedding went well. The last people to get there were Ray and I as when I arrived to pick him up at the hospital he was still getting shaved. The bride’s limousine went round the block a couple of extra times and we were seated by the time she arrived. The whole day went well from then on.
There had been a lot of things happening the week before and I think we barely got through it all. All weddings have glitches but luckily they all happened before the ceremony so that was fine. Th
I had one of those strange days today where nothing went as planned. I had to try the suit I had for Ray to wear to the wedding on him and thought that would just take half an hour or so. I had other plans for the rest of the day.
As soon as I took the suit jacket in I realized that it was not big enough for Ray. During his long hospital stay he has lost so much muscle and he now has a really round mid-section, adding about 10cms to his waist. He also has two frozen shoulders not one, as
Ray was not accepted for the Transitional Care Unit as his progress is "too inconsistent" - well folks he has brain damage!!!. I guess it was an outside chance and I was willing to do it to get him home with more abilities. I know there is only so much money to put into these things and so they only take the "winners", those who will benefit most from the more intense physiotherapy etc. I am just sad that this time that was not Ray.
So I have had a couple of interviews with the social wor
For the last few days I have been trying to make some decisions about what is best for Ray. I have seen several social workers and looked at what he needs to come home etc. I have had a new toilet put into our bathroom and discussed with our son whether it would be feasible for him to move back in with his family so he could help with Ray. That would be a major shakeup for all of us, fitting five people into a very small three bedroom house. All in all I have done everything I thought I needed
