Waiting for the inevitable...

[cattyg]

I've never posted on here before, but now feel the need. My Mum has end stage dementia & has been bed bound since Oct'16. My Dad is 91 & her full time carer. They both live in a granny flat attached to our house & we've been lucky enough to be able to keep her at home with carers now coming in 3 times a day.

My Mum always loved Scottish dance music (we're Scottish!) & taught Highland dancing when she was young, so as her illness progressed, she loved to watch Scottish dance DVD's & Scottish gaelic singing. For over a year after becoming bed-bound, she could still enjoy her music & I'd play her Scottish gaelic music by her bedside & we'd clap, she'd laugh & smile & these precious moments made it all bearable, but now she doesn't seem able to get much pleasure from it any more & I'm not sure she hears it properly. Another thing I find very hard is that she can't seem to see me or to focus on my face - about 3 months ago, one morning, she looked straight at me & smiled & it was just wonderful.
This illness is so tough, it feels as if I've been trying to find positives in a living hell for years now.
I don't know how to connect with her any more & it breaks my heart.
Sorry to sound so depressing, I normally try & remain upbeat, but I feel at crisis point.
I think the GP, District nurses & carers are all surprised she's still with us, as she was prescribed the 'end of life stage' drugs way back in Oct'16 & she's still here!
Part of me wishes she was at peace & part of me wants her to stay as long as possible.
The GP prescribed her 4 x Ensure drinks per day & she's actually put on a little weight, but in a way, I don't really see the point. She seems sad & slightly distressed on a daily basis.
Not sure what I want to say on here, but feeling a bit lost. Thanks for listening.

 

[smartieplum]

My heart aches for you. I would just keep playing her music in the background and chat away, as hard as it may seem. You don't really know what she is taking in at this point. My mum loves music too and still enjoys it although it usually sends her to sleep!

 

[Islay]

I’m at a very similar stage with my mam. One medication she has is citalopram, which helped her mood, but now she sleeps so much. She can’t move or speak, but can sometimes smile, and I still play softly in her room the ballet songs & cliff Richards that she loved. I don’t know what she’s thinking, but even if she can’t express it externally, I hope it makes her feel relaxed/comforted/happy. I brush her hair too, as she loved that, but it’s hard when there’s no smile to show you are making her happy.

Mams also on similar prescribed drinks, but gets constipated & agitated with that (but hoisting onto commode x 4 a day let’s gravity help a bit)

I totally get what you say, as I don’t want her to suffer, but I just don’t want to loose her. It’s so difficult.
but at least I know that Im helping dad by spending time with them both, reminiscing old stories, and she can hear us chattering. Take care x