Hello All,
Since my mum's diagnosis last year in April...and like so many of you...I am on this terrible and full of anguish journey. I am watching her deteriorate daily - her consultant says she is unlucky because she progresses very rapidly...and is now (10 months on from a very early AD diagnosis that no one could spot) a moderate to severe AD patient. The other day an acquaintance visited and said that she hopes her children never get to see her in the state my mum is in! I felt terrible to hear it...but she did not mean it badly...it just came out like this...People make insensitive comments all the time, and do not think of the impact of what they say on others.
How do you cope knowing your mum is no longer part of your life, does not know what is going on in your mind and does not "get you" any more when you talk to her (but you still talk to her and hope she will give you some sound advice as she used to...), will never support you again in anything you do, will not be part of your joys or sorrows? How do you cope having her around when she is no longer there mentally, watching her be so confused and lost, watching her trying to understand what is happening to her but unable to express any of it? How do you cope knowing that there is nothing you can do to really help her? And although I know this will get worse still...and hope she will not suffer much more until her journey is over...I still do not want to lose her and cannot prepare myself for the day she will not be here physically. Am I selfish or stupid thinking this way...not being able to come to terms with what is happening? How can anyone come to terms with watching their loved one suffer so much, lose their dignity, have others laugh at them or pity them, become someone they would be embarrassed to know before this terrible disease hit them so hard?
I just wanted to share some of my thoughts here...as I know they will resonate with so many of you. This is such a lonely journey...and no matter how much I try, I cannot accept what is happening to my mum. I know it is real...yet it feels like a never ending nightmare...I wake up hoping it is not true...and it gets worse every day.
Apologies if this is too depressing...best wishes to you all for strength and courage.
Since my mum's diagnosis last year in April...and like so many of you...I am on this terrible and full of anguish journey. I am watching her deteriorate daily - her consultant says she is unlucky because she progresses very rapidly...and is now (10 months on from a very early AD diagnosis that no one could spot) a moderate to severe AD patient. The other day an acquaintance visited and said that she hopes her children never get to see her in the state my mum is in! I felt terrible to hear it...but she did not mean it badly...it just came out like this...People make insensitive comments all the time, and do not think of the impact of what they say on others.
How do you cope knowing your mum is no longer part of your life, does not know what is going on in your mind and does not "get you" any more when you talk to her (but you still talk to her and hope she will give you some sound advice as she used to...), will never support you again in anything you do, will not be part of your joys or sorrows? How do you cope having her around when she is no longer there mentally, watching her be so confused and lost, watching her trying to understand what is happening to her but unable to express any of it? How do you cope knowing that there is nothing you can do to really help her? And although I know this will get worse still...and hope she will not suffer much more until her journey is over...I still do not want to lose her and cannot prepare myself for the day she will not be here physically. Am I selfish or stupid thinking this way...not being able to come to terms with what is happening? How can anyone come to terms with watching their loved one suffer so much, lose their dignity, have others laugh at them or pity them, become someone they would be embarrassed to know before this terrible disease hit them so hard?
I just wanted to share some of my thoughts here...as I know they will resonate with so many of you. This is such a lonely journey...and no matter how much I try, I cannot accept what is happening to my mum. I know it is real...yet it feels like a never ending nightmare...I wake up hoping it is not true...and it gets worse every day.
Apologies if this is too depressing...best wishes to you all for strength and courage.