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looking toward spring



My health has settled down a bit here and I am coping okay. Not much help when I was sick but as the “strong woman” I am not considered in need of help. As the helper to all and sundry I am always the giver, not the taker. In our friendship group everyone is a well-wisher but no-one actually wants to do anything hands-on. The ladies with a casserole that once came to a household where there was sickness are a thing of the past. Life moves on and progress does not necessarily build community.


I have found my energy again so I am back in to working in the house and the garden and willing to jump in the car and drive somewhere if I need to. With winter still here I am not sure I actually want to go out at night as yet but last night at the Lions dinner I noticed I was happier to be in a social setting again.


The family is unaware of how much effort it takes to look after Ray with the exception of Trevor. I am trying not to put any extra on him now that he has a partner and a step-son to look after, I appreciated his years of being our back-up person but now he needs to re-structure his own life. We all need to have those good middle years before taking on the care of ancient or decrepit relatives.


Because we had some survivors “visit” in chat today we were talking about going back to work. When Ray had the 1999 strokes we gave up three jobs, he worked as a carpenter and I worked as a government worker three days a week in Pensions and two days a week in a parish as a kind of welfare officer. So the strokes took us both out of the workforce. It is over eleven years now since my official resignation, a lot of lost years and lost income.


I have had the painters here on and off for five weeks, an unusually wet winter meant that the five days or so they had planned to be here turned into five weeks. They are gone for four weeks and then we will have the rest of the interior painted. That is a huge job and requires me to do a lot of sorting and packing as a lot of our storage units need to be moved. Another mammoth task for a caregiver to tackle, so will break it up into manageable segments and ask for help if I need to.


I know when the painters were doing small repair jobs Ray must have cringed at the workmanship. Ray was always very precise and as a trained carpenter and cabinetmaker his joints were always perfect. The painters sort of did the job, not dainty work by any means but at least the repairs were done. I could never have afforded someone of Ray’s skills to do the work. I still hanker after having him back to being my handyman again. Oh for a time machine or a magic wand!


I do appreciate we are in a better spot than most. We had savings designated for our retirement and a small pension payable after invalidity and with a top up from Ray’s government pension we have managed very well. I am not mourning the money lost, what is the point of that? I am mourning the passing of an era – our working life.


So I need to get on with living now. I am a great admirer of Sarah (spacie1) and her ability to get Gary out and about and make their summers memorable. I am held back I think by the way I see things as obstacles rather than challenges. In the early days (2002 – 2005) Ray and I used to do holidays by coach but then he slowed right down the result of the 2005 stroke, or maybe the cumulative effect of all five. For three winters we were able to go to our daughter in Northern Queensland for holidays but now she is down south of us so winter holidays there would be even colder than if we stayed home. And she lives in a two storey house with guest accommodation downstairs and it is not as convenient as when we were all on the same floor. And Ray has to be dragged up the stairs so all round not as good.


When my parents were older we used to take them on holidays with us. There would be seven of us, Ray and I and three kids and two older folk. It was always Dad’s idea and he and I would work on the itinerary. Mum never wanted to leave home but we would convince her it was only for a few days. The holidays varied in length but Mum cheered up after few days and things got better. Dad just loved the holidays and Mum was happy with the family around so he got to enjoy the time too.


The next few weeks are a pivotal time as we change seasons, spring runs into summer then autumn and back to the cold weather. I hate the really humid days of summer but prefer the heat to the cold. I just need to look at life realistically and work out what is possible with Ray this coming summer. I want a holiday but don’t know that that is feasible for the both of us. I am reluctant to start taking a holiday by myself but I know a lot of caregivers do when the person they care for is easier to care for at home than away from home, which is the stage we are coming to now.


All decisions we make as caregivers are hard ones to make. Early in the timeframe it is about the recovery of our care recipient, then it becomes about maintaining what they have gained and now in my case planning for care in the future. I say the future as I am hoping we can plateau here for a while. At this stage I can almost maintain Ray with the help I am getting – a little more help would be nice though, taking some of the strain off me.


My crystal ball is broken, my teabag doesn’t leave tea leaves to be read – guess I just have to take it a day at a time and see what the future brings as usual.


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Sue: yes, wild night in chat, but your managed it with grace as usual. I was telling Bruce about it this morning on the way to swim and he laughed all the way there. As I discussed last night, Bruce is also ready for a holiday but again as you mentioned I am thinking of obstacles rather than challenges. I am thinking we should go before the baclofen trial as I am not sure how quickly that will move if he is approved and the recovery will be significant. We here are entering our fall-winter, so that will also limit us. I have thought about bringing help, but in all fairness, Bruce really does best with me and like you, I can manage fine-I just get so tired. My 40th high school reunion is this weekend. While it is not feasible for me to attend the big event ($50.00 for dinner, $80.00 for caregiver and if something happens, I have to come home anyway) our friend has offered to stay with Bruce and take care of dinner/bed (which he does fine)for me to go to the happy hour Friday night and I will not get a call to come home unless they are headed to the ER=difference in friend as opposed to employee.I am so looking forward to it and maybe it is just the break I need to recenter and deal with my reality. Best and I hope the sun is shining on you-Debbie

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You are a very strong woman and you got stronger through the years being able to handle all the situations that faced you, almost all at once. I would not have had the courage myself.


I praise you all the time as a care giver extraordinary in just caring for Ray alone, let alone your mum, dad and doing this for many years. You could easily be one of a kind in the field of giving care to loved ones over such a long period of time!


I'm very glad your health has settled down and you are looking forward to Spring time again! Take care of you, please!

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