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turning points



From time to time we reach some sort of turning point and I realise that something that was once easy for us to do as a couple is no longer possible. I guess with spring now approaching and seeing summer ahead with all it’s enticements I am again listing what Ray and I can do and what we can’t do. And I sit here mourning the losses and sighing with relief that some things are still possible.


The Apex40 Club we belong to is going on it’s three day excursion at the end of this month to an area close to where Ray was brought up on the Hawkesbury River. Prior to his strokes Ray would have been the one insisting on a boat for a river trip, getting the rods ready for the fishing and sorting out the camping gear. Now we are not going at all. Too difficult now for us to go camping, not much better in a cabin without the proper disabled access,definitely not good running the wheelchair over uneven ground, up and down river banks etc. There are so many reasons why we are not going. And it is so sad that this so close-to-home experience is not accessible now.


I am not sure we will be doing much in the way of going to the beach, enjoying evenings out, sitting under the stars at the end of a BBQ with friends etc this summer. Ray is very much like your average 80 year old now, fond of his own home, his own bed, his own routine. At 67 that is not so good for him and for me at 63 even worse. I still want to swim, walk, drive, holiday, explore new things. I still want to be surrounded with laughter and good humor and have some fun! It is too early for me to take out my teeth and put them into a cup at night, I am not ready for that yet.


So do I get morose and full of self-pity or what do I do? Well, eleven years of caring and counting I have done a lot of “giving up” so I should be good at it. I have done a lot of adapting to circumstances, putting Ray’s needs first and finding a “new normal”, but that doesn’t mean I am happy about it. So thinking local and shorter expeditions is probably the way to go. We can still enjoy summer, we just need to put some planning into how much we can do and do it in the mornings when Ray is fresh and more alert.


So our “days out” will mean a trip to one of the beaches or lakes nearby, a walk along the shoreline pushing the wheelchair, a cup of coffee instead of a picnic. Our evening entertainment will be a BBQ with family in the backyard rather than a night out, with Ray having access to his own bed when he wants to go there. And maybe I will catch up on those girlfriends when I can have Ray in care for a few days. Okay, it is not the high life, but it is a life.


Give a thought to the long term caregiver, the marathon runner of the caring business who battles the seasons and the elements to keep themselves and their care recipient sane and in good heart. It is not an easy job and if you can lighten the load in any way please do so. Because we are survivors or caregivers ourselves does not mean we can be oblivious to the needs of those around us.


Here we smile at the other caregiver who pushes a wheelchair past us, acknowledging we are part of the same kinship group. I open doors if I can or offer to take a trolley back to the bay for someone older than me who is struggling. I need to feel as if I am lightening the load for someone else in addition to dealing with my own load as well as I can.


So if you are changing from summer to winter or winter to summer you need to take a while to look at the season ahead and see what you need to do to make the time ahead easier on yourself and better for the person you care for. It is the planning now that will make the time ahead easier to deal with. And although we will never have it easy, easier is better.


We talked about some of this in chat tonight and probably will some more in weeks ahead. A few different opinions, some handy hints and help sorting things out make life much more do-able. Just as many hands make light work so many opinions give you a range of options to work with.


There is a lot of life ahead for Ray and I still and we both need to be able to enjoy it. If I make myself a martyr that will not work out well for Ray either. So hopefully I can gain his co-operation too as I plan for spring and summer. I want summer 2010/2011 to be a good one for us.


We may sit on the beach but putting our heads in the sand is not an option. The caring ostrich needs to keep the head up and the eyes looking ahead.


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I hope there is some kind of respite care that can ease the load on you, so you can do the things that you want to do and enjoy. A place where he can be comfortable, like a home away from home. That way, you'd be refreshed when you have your hubby back home. Like taking a little vacation, somewhat. You and the other caregivers have my deepest respect. I am totally grateful for the nurses' care when I was in the hospital and made sure that they know it. I've seen what it was like for my grandmother and my mother when they took care of my grandpa in the last years of his life with Alzhiemer's disease. I helped them in the care as much as I could. I hope you have help and respite, so that you can enjoy life and not have to sacrifice so much.

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Sue, you give me a laugh and make me feel so good during our escape to the chat room, I wish I could do the same for you everytime you get to that place you know a lot better than I do. Mike

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I empathize with you. I am a kindred spirit to the person pushing a wheelchair. I like you, am one of the first to open a door for a struggling person or open a door for a person in need. We caregivers "see need" where others do not.


I agree that we need to live life. WE need to enjoy our lives. I am thinking about what we can do. I had thought about a small day trip, but it is raining and ugly. I think that we will stay home.



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Ruth, raining and ugly really described the day here too. I am not taking Ray out in the rain if I can help it. His new Friday carer said it was too cold outside this morning so they sat inside. Ray prefers outside.


I actually had a nap this afternoon, I intended to do some house cleaning but decided I needed to look after myself better. I want to shake this cold off and feel WELL again. I think that is going to be my aim for next week.


A good friend is urging me to re-organise my time so I actually use my three hour respite for "me" time, not shopping or doing chores for Ray. I will try to heed that and think of more things I can do to relax and enjoy spring and summer.



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Sue: I am the survivor but can identify with everything you wrote both for me and my husband. I printed it out so I can read it again and show it to my husband. Caregivers do not have an easy job that is for sure. Your life changed at the same time as Rays. Marriage says for better or worse but I'm sure my husband didn't realize what it might mean. You are one strong, courageous, spiritual soul who has a lot of wise words for all of us. :forgive_me?: Hugs Leah

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