End of Life Loeys Bodies Dementia

[Nadsey]

Hello there,

I don't know if anyone will read this but I am deeply struggling with understanding/accepting my Mom's disease, Rapid Decline - RPD caused by Loeys Bodies Dementia, I understand all the medical terms and effect this cruel disease has but how or why does it happen so quick. We struggled for 2 years with this disease not knowing what disease was secretly killing her, she was officially diagnosed with it in Feb 2019 and now is June 2020 I can no longer recognise her. The weight loss, the inability to speak, walk any motor function really. My mom was booked into a care home 6 weeks ago following a fall she took, I finally got to see her yesterday (thanks to covid lockdown rules) and what I saw was a ghost of who my Mom is or was, grieving for her when she hasn't actually gone.. how do you accept this... how do I move on with my life when I feel helpless to help the one person who always cared for me, who gave me life.

 

[Shedrech]

oh @Nadsey what a poignant post
a warm welcome to DTP
sadly, many members will recognise the feelings you describe ... heartbreaking

how to get through, I think we each find a way and just about cope ... my dad, before dementia, told me in tough times he got by simply putting one foot in front of the other however slowly, so that's what I did ... took each day as it came, not comparing with what was past, merely looking at what was in front of me, a bit like tunnel vision ... only after dad died, I began to get back a sense of the whole of his life

it's so hard to have the person we love and respect slowly dissolve in front of us .. and the major steps down, which certainly can be sudden, are tough to face and accept .... their essence remains, though, and stays with us

I hope joining us here, where you can posts knowing members understand, will help

best wishes to you and your mom

 

[canary]

Im not sure that any of us cope very well with the last stages of dementia @Nadsey . Anticipatory or ambiguous grief haunts most of us. It is even harder when you cant see them very often and the changes show up most starkly.

Your mum is still there, buried deep within the dementia, though. Sometimes it will surface by something she says, a smile, look or mannerism. It may be triggered by your voice, or the sound of a piece of music. Try and look past the ravages of the disease and see if you can see that bit of your mum there,

((((((((((((((((((((((((((((((hugs))))))))))))))))))))))))))))

 

[Nadsey]

Thank you @canary, those words mean so much, it was just so traumatic to see the changes that have drastically happened in the last 6 weeks. I just wish I could give her a hug and be close to her but at the moment that cant happen, which makes it worse. Seeing what she has gone through for the last 2 years let alone the last few weeks is haunting me and feels like I am being eaten up with grief and guilt. I just want her to know I am still here and love her with every bit of my being. She loves music and the next time I see her I will play her some.

 

[Nadsey]

Thank you @Shedrech, hearing about you cope with your loss and the disease really helps, my little family made up of my daughter and my Dad feel very alone with this but reading the posts on here makes me feel a little less alone.
At the moment just trying to carry on breathing feels like a mammoth task, feel like we are all stuck in a bad dream and cant wake up.

 

[Pippen33]

@Nadsey Sorry to hear about your mum, heartbreaking read. My dad has also been diagnosed with Lewy Body dementia recently and his decline feels rapid although maybe not at the late stages yet. I, like you am struggling to accept that he's got this terrible illness. 'Why him?' All he's done is work hard his entire life and when it comes to enjoying it he is struck down with this.
My dad is in hospital at the moment. Saw him on Sunday after a week or so and it was horrible really... face looking all skinny, confused and not recognizing me at first. It's so tough and its constantly on my mind. One bit of comfort I'm taking is that we're not alone in this struggle... keep your head up and all the best

 

[Banjomansmate]

Lewy Body Dementia seems to be a form in which deterioration is fairly rapid, especially nearer the end. The Banjoman went downhill quite quickly in the last couple of months of his life, with a sudden deterioration right at the end.
His sister-in- law was warned about this by her brother who is a Dr., so we were rather expecting it but it was surprisingly rapid.