"THEY NICE!".. these are the words timidly uttered by my frail auntie Joan, 75, when I asked what was the most important thing to consider in choosing a residential care home for her this weekend.
I could see the fear and uncertainty in her eyes, her overwhelming vulnerability as I delicately tried to discuss with her her wishes, shortly after receiving the somewhat devastating news that she now has motor neurone disease.
I say "discuss" but really its rare to hear poor Joan utter more than 2 words together, which we now realise is due to the progression of her illness. Often, the only words that she manages to say are "YES", "NO" and "OK". Though a stroke 9 years ago, robbed her of 'normal' speech, the last 12 months has seen Joan's speech become pretty much monosyllabic. I often sit with her, pondering what she is REALLY thinking and feeling? When asked.. all she says is "OK!" I suspect that she is FAR from OK! But people her age where never taught to share their feelings.. ONE thing, thankfully our generation has improved on.
I tried, really hard, NOT to look up those 3 words.. MOTOR NEURONE DISEASE on google, fearing what I would learn, but after 2 weeks, when the doctor finally told Joan the crushing diagnosis, I felt it my duty to know at least a little incase Joan wanted to know anything..
Most people associate motor neurone disease with the famous scientist, Stephen Hawkings. It's basically a progressively, degenerative condition where parts of the the nervous system become severely damaged.
Joan already has problems: gripping, walking, speaking, swallowing and breathing
and as the illness progresses, she will find these activities increasingly difficult, and eventually impossible to do. My heart sank when I searched the list of signs of MND because Joan has all of them! The thought of Joan's speech evaporating even more, and watching her struggle to breath fills me with sadness.
This is a lady who held quite a high admin position with Glaxo, who has travelled the world and still shows glimpses of high intelligence. Joan has always been a delicate little flower.. to me.. I adore her.. she is like a second mum.. never having children herself. Joan's present vulnerability makes it imperative and a huge responsilbility for me and mum to find her a decent care home in the local area, where everyone treats her "NICE!" The thought of anyone abusing her, or NOT being NICE to Joan.. fills me with dread!
So I am praying for guidance, and if any of you have experience of any care homes in the wigan area, near to ashton-in-makerfield, which may help our choice.. please leave a message.. I would be really grateful for any help in this matter.
Me and Joan have always had a special connection.. and its that 'special connection', the ability to guess what she is thinking and feeling that hopefully will help us to keep safe, her beautiful, gentle, soul that is trapped in her weary body, that is just patiently, listening, and waiting to escape to a place much more wonderous than this.
Sending love to you all.. wishing you a week full of love and peace.
Huge hugs xxx
Lesley
I could see the fear and uncertainty in her eyes, her overwhelming vulnerability as I delicately tried to discuss with her her wishes, shortly after receiving the somewhat devastating news that she now has motor neurone disease.
I say "discuss" but really its rare to hear poor Joan utter more than 2 words together, which we now realise is due to the progression of her illness. Often, the only words that she manages to say are "YES", "NO" and "OK". Though a stroke 9 years ago, robbed her of 'normal' speech, the last 12 months has seen Joan's speech become pretty much monosyllabic. I often sit with her, pondering what she is REALLY thinking and feeling? When asked.. all she says is "OK!" I suspect that she is FAR from OK! But people her age where never taught to share their feelings.. ONE thing, thankfully our generation has improved on.
I tried, really hard, NOT to look up those 3 words.. MOTOR NEURONE DISEASE on google, fearing what I would learn, but after 2 weeks, when the doctor finally told Joan the crushing diagnosis, I felt it my duty to know at least a little incase Joan wanted to know anything..
Most people associate motor neurone disease with the famous scientist, Stephen Hawkings. It's basically a progressively, degenerative condition where parts of the the nervous system become severely damaged.
Joan already has problems: gripping, walking, speaking, swallowing and breathing
and as the illness progresses, she will find these activities increasingly difficult, and eventually impossible to do. My heart sank when I searched the list of signs of MND because Joan has all of them! The thought of Joan's speech evaporating even more, and watching her struggle to breath fills me with sadness.
This is a lady who held quite a high admin position with Glaxo, who has travelled the world and still shows glimpses of high intelligence. Joan has always been a delicate little flower.. to me.. I adore her.. she is like a second mum.. never having children herself. Joan's present vulnerability makes it imperative and a huge responsilbility for me and mum to find her a decent care home in the local area, where everyone treats her "NICE!" The thought of anyone abusing her, or NOT being NICE to Joan.. fills me with dread!
So I am praying for guidance, and if any of you have experience of any care homes in the wigan area, near to ashton-in-makerfield, which may help our choice.. please leave a message.. I would be really grateful for any help in this matter.
Me and Joan have always had a special connection.. and its that 'special connection', the ability to guess what she is thinking and feeling that hopefully will help us to keep safe, her beautiful, gentle, soul that is trapped in her weary body, that is just patiently, listening, and waiting to escape to a place much more wonderous than this.
Sending love to you all.. wishing you a week full of love and peace.
Huge hugs xxx
Lesley