My beloved son, diagnosed in September 2019 but due to an existing disability we believe he had been actually suffering from MND for a year or so before diagnosis is becoming increasingly withdrawn, the whole family are struggling to know what to do as it’s constantly like walking on eggshells, I fully understand why of course, just wondering if any one on here has had experience of this and how best to help him through what I believe are his final days, so hard to have to witness his suffering and feel so utterly helpless
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Oh David, that's heartbreaking to read. Did your son every get psychological help?
Originally posted by David71 View Post... how best to help him through what I believe are his final days,
If you think his psychological state is such that he doesn't want to face life any longer, you should talk to his GP (fwiw)
I think you should ring the MND Connect Helpline and talk to them, 0808 802 6262, it's too much anguish not to share.
Love Ellie.
Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.
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Hi David, isn’t there a palliative team offering any support to your son and the family.?
Not sure if you mean he is literally in your opinion at his final days in which case all the more urgency to get help.
Ellie has suggested to get GP on board..If there is a palliative team I suggest you contact them asap to discuss your concerns.
There is psychological help available but depends if your son is willing to accept it.
Really hope you get some help asap.
Regards
Mary
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David71 So hard to watch someone you love withdraw and know how you can help. Your love and belief in him must be so valuable in itself. Others have suggested professional help, medication, as Mary says if he will accept it. MIND? Otherwise hang on in there with your love and being there for him, will give him a supportive environment for him as he struggles with it? Do hope he somehow finds relief, and you definitely get some support for yourself, MND connect etc. xDiagnosed July 2020, ALS bulbar onset. PEG and ventilator (mainly at night), and pretty poor speech, but legs still about functioning!
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