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wants and needs



Hi there all. It was a nice spring morning…not sure what is happening this afternoon as the wind is back and it is a cold one from the south so I guess spring is not ready to give way to summer yet. It snowed last week on the higher peaks of the Snowy Mountains and out on the Western Plains so that explained last week’s cold snap and the way we had to pile covers back on to keep warm at night. This week we’ve had a couple of warmer days but today it seems to be getting colder as the day progresses, not warmer as it should.


I am as usual doing too much. I thought when I finished the Certificate course I was doing in Pastoral Care that I would have heaps more time…not so. Winter flattened me with the bronchitis, viruses etc and then slowed me way down so now I feel as if I am running to keep up with life. There is so much to do, places to go, people to see, I feel as if I am dragging a concrete pylon through life…wait a minute, maybe that is Ray?


We were just discussing lack of comprehension of a caregiver’s needs this evening in chat. How difficult it is to get “me” time and to get our needs met. I do try to take “me” time, slow down the pace of life, pace myself in what I do etc. All this is what I tell new caregivers to do, but somehow it is hard for me to do. Maybe, looking back, I have always lived life flat out and although that pace is not possible now I still try to achieve it. I can just see so much to do and want to do it NOW.


Today I did an interview with a University student on community care issues, this included how I find access to care, standards of care and whether the care I get from sources such as care providers and government run programs meet my needs. Errr…nope! While this survey is aimed at people who care for someone with dementia it could equally apply to someone who cares for someone who has had strokes.


There is never going to be the care we want, need and deserve, the dollar does not stretch to that from the private purse, insurance, compensation or from whatever source our money comes to buy in care. We are stuck with the level of care we have now unless we can rope in family members, church and charity groups etc to help us extend the kind and amount of care we need. That will vary according to the difficulty of caring for the person who is your care recipient.


So that’s my needs – how about Ray’s needs? We are using a service provider for five hours of care a week, three shower hours and two respite hours, he goes to Daycare and I take him to church and to the meetings of the organisations we still belong to. We are way past therapy of all kinds, that happened after the strokes in 1999, 2001, 2005 and again when we attended a six week program in 2006. The last lot of rehab was after his pelvis fracture in 2008. I guess I could look into more PT and OT but with his limited short term memory would that be beneficial?


It is a balancing act, his need, my needs, his therapy, my outlets, his timing (naps etc) my timing. This marriage has had a lot of stuff thrown at it over the years and it is a wonder it survives, but it does, 42 years and counting. Why? I think because we have learned to compromise, well I have. Ray has just learned to ignore me and hurtful as it can be sometimes it has been a lifesaver for him and probably explains why HE has been married for 42 years. What does not kill you makes you strong.


And so we go on from day to day. Someone suggested it is like room-mates, yep, some of the time it is, sometimes in is more like conjoined twins, one body (or brain) two sets of needs. You got that joined at the hip feeling? Me too. But I’ve also got the feeling of being needed, being useful and sometimes, being right where God wants me to be.

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I learn so much from your blogs what caregiver must be going through in heir life, since my caregiver and spouse will never share his thoughts this beautifully with me. So I learn from your blogs what I can do make his life and our journey better and fun for both of us. I know as a survivors we all are different level of functioning, but it never hurts to take some load off your life's partner.




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