Absolutely, without any shadow of doubt, my mother’s ‘care manager’ has been her family. My sister, two brothers and me. My sister and I have shared the caring, where we each live with and care for her three weeks on, three weeks off. My brothers have dealt with all the various forms to fill out, financial management, and investigations regarding aged-care facilities that we have so far rejected.
We are clinging to the notion that we can keep her in her home. In another situation, or medical circumstance, an aged-care facility would have been the right decision. Many of her friends have voluntarily chosen that type of residence. But my mother’s situation is different in that she had not reached that state of mind where she would have been happy to go down that path. Her condition came on suddenly, and is finite. As both my sister and I live away and would need to travel to visit her anyway, we felt that this is something we would like to give her – if we can – to keep her in her own home. It is her wish.
In the beginning, there was a crash learning curve for us all researching her medical conditions, contacting medical professionals in the family and extended friend/ family network to help us get up to speed, then talks with doctors and specialists about correct medication and care-regimes. Then we became brave enough to accept what we knew was right for her, and reject some we felt (or she felt) were not. We have had to make final decisions as to what is best for her and her needs. There was the shock of realizing her own doctor of forty years standing did not do home visits and (through a friend) finding the one in a million doctor who still does. He is an angel in disguise and makes our mother feel special. He has restored our faith in humanity. We have obtained in-home community nurse visits and other assistance such as occupational and physio-therapy. Ultimately, however, we provide most of the care.
It has been a difficult decision. I have not met anyone who has not felt the same thing. The tugged heart strings as to what is best to do, and there being no easy solution. I am so grateful that I am one of four siblings and that we are able to share in the care. I have friends who have been the only ones who have shouldered this care and they have ended up collapsing with fatigue.
Another reason we have kept her at home is that she was not ready from the point of view that she still had many projects that needed to be finished. She was treasurer of three community groups and on the committee of an historical society that produces quarterly booklets with her active involvement. My brothers helped her wind up the treasurer roles and my sister and I helped her with the last history booklet. But there still seems to be a lot of projects she has on the go. We have now accepted that she will never be ‘done’ with all her projects, and therefore she will never feel ‘old’ enough to go to an aged-care facility. Having been widowed at age 47, she brought up my two younger brothers on her own. When she came to ‘retirement’ age, being on her own and therefore not having someone to lean on or care for, she carved out a life for herself in the community. There never has been time for playing cards, bingo or smelling the roses for my mother!
One of the things that my brothers have done for my mother is that they are leasing a house around the corner from my mother’s two-bedroom unit. They stay there at weekends and the grand-children have been able to come and stay there. It has become our ‘family home’ and we have had some wonderful family times there over the past five months including Christmas and a special birthday celebration for my mother.
We are all grateful of having this time with her now – ‘smelling the roses’.
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