I’m re-blogging a post from a blog I read called Memory Issues, written by a loving and enabling husband Paul, who is the care partner for his wife Maureen. I really respect his willingness and creativity, to allow his wife to be as enabled to live her life, as well as possible. Often, what I see is loving, well-meaning care partners who almost completely disable and disempower their partner with dementia. I feel sure though, it is not their fault but rather, that they have been set up to do this by the Prescribed Disengagement ® dished out to us all. It is also why I advocate so loudly for a change in our post diagnostic pathways, at the time of diagnosis, as it is not only unpalatable to be told to go home and get ready for aged care and die, it is unethical.
People with dementia, and our families and care partners, need to be taught and supported to live beyond the diagnosis of a dementia, for as well and as long as possible, rather than be told to give up, and have all hope of any future taken away immediately. The usual, “see you in six or twelve months” straight after a diagnosis, with little or no support to live with dementia is unacceptable, and we must fight for better care from the medial profession, and by the service providers, many of whom also support this pathway to hell.
“I am posting earlier this morning as I will be leaving for London in an hour.
It is a sobering experience listening to your wife telling you that: ‘she feels like a prisoner in her own home’. Yesterday morning Maureen was at pains to explain to me how she felt: ‘locked in and no longer able to come and go as she pleased’. I fully accept her feelings on this matter and am trying to address her concerns in a number of ways…”
Thanks Paul, for writing about your shared experience, I often find it incredibly confronting reading about what is ahead for me, even though I already ‘know’ what that is having seen it and worked in a dementia unit. But, I feel hope too, that you are finding your own way to enabling Maureen, and to cope with your own sadness and losses, caused by the symptoms of her dementia. You do not blame her for the changes, but continue to love and support her, as her husband, even when she forgets who you are. Take a bow… xox