Visiting mum (57) in a care home and sh***g it

[tomissmymum]

I haven’t been home in about two months . My mum has early onset dementia, she’s 57 tomorrow . She’s not well at all, she won’t recognise me or interact much with me . I haven’t seen her since July .

I need to see her but I’m terrified . I’m on a three hour coach journey, and I keep dissociating which gets me into a stupid anxiety feedback loop . Horrible mix of agoraphobia and claustrophobia .

I’m going with family, not alone, but I’m so scared .

Who is overseeing her care?
I used to work in dementia care as a staff nurse on a hospital ward ,sometimes it's just a matter of adjusting her medication ,to help her be more settled

Oh she’s very safe, clean etc - even if I don’t go in my cousins do every day just about and she couldn’t be safer . There’s alarms in her room that trigger if she opens the door, or gets out of bed so a staff member can be with her in seconds . They’re pretty much 1-1 ratio too, mum’s very rarely on her own . So she couldn’t be safer . They’re lovely staff . So even if I’m not going family are there constantly . My aunty said sad thing is she never sees any other visitors but it’s exceptionally hard so I can understand if others feel the same way as me .

Care is being overseen by psychiatry/neurology, they have a meeting every week, and I think GPs from local surgery are in and out regularly as well . I miss her previous GP though who was just absolutely lovely !

The worst thing at the moment is having nightmares where I can quite clearly hear her shouting my name - I wake up with a start each time . Or dreams where she’s fine and we have a normal conversation - but with me always asking her how she got better . Horrible way to start the day . GP said to try contacting Marie curie or Cruise bereavement care for help, said it’s all grieving process .

It’s the forever I can’t cope with - keep remembering this will only get worse, and worse, until she dies and then she’s never coming back - and when that hits me I don’t want to do anything at all . Not even crying, just lying in bed in silence . Absolute hell .

Ah that's good her care is being overseen by psychiatrist, s they are experts in the field, and hopefully can sort her medication out ,to help her be less agitated/ calmer ,wishing you all the best ,it's a horrible illness..

Thank you , they’re getting consultant into see her today as she’s not really slept or rested at all for a few days now and must be absolutely exhausted .

I don’t want my mum to die, but equally this is hell for her, desperately hopefully something settles her soon .

Oh I'm so so sorry. I'm a student nurse and have a fair bit of experience with dementia patients and it is a vile, vile disease.

It’s bloody awful . I feel guilty for even thinking it but my dad’s mother died with dementia last year (along with breast CA, covid, and a whole host of other things) .

She never lost her speech, she could still chatter away about her parents and childhood, she was mostly very happy if confused to time person and place … I know different types and my grannie was in pain, and she did suffer at the end I think, and I wouldn’t wish any sort of dementia on anyone … but I so so so wish my mum could still have a conversation with me . I wish I could phone her, or sit with her and look at photos … the only tiny thing I’m clinging onto is that this is going so unbelievably quickly that the end might too . Experience from work would suggest months not years and not many months . It’s hellish .

I wish I was misunderstanding things but think we are getting to EOL now, she hasn’t slept properly for days, she’s falling constantly, not eating or drinking, very little useful speech, high risk to self and others . Doctors are ringing family apparently . Relative spoke to me last night, then I spoke to one of the nurses . She might rally but I don’t know . Dementia doesn’t really improve does it . She’s been this agitated/distressed now for 3 months on and off .

Unfortunately it does sound like she's entered the final phase. I don't know anything about Picks disease though.

2 grandparents have died of dementia, stopping eating was a few weeks out. One did rally several times, coaxing to be fed etc (she would eat for me not the nurses)

I want to hug you and say it's going to be ok, but we know the end- certainly time to mentally prepare. Turn to your support system at university, your family seem supportive too. Perhaps sort out practical things, it helps some people (we were asked to nominate a funeral director in case they couldn't reach us on the phone for instance)

I'm so sorry, she's barely older than me, you are my DD's age. There are lots of dementia support groups, consider going to one - talking can help some people

Sadly its a progressive disease,I hope they manage to help her feel calmer and.more settled .

Thank you

It’s very difficult to get a grasp of things . Things seem to change day on day . More settled today . She has a funeral plan thankfully, that side of it’s all sorted to an extent .

When she’s drinking she’s not swallowing at times - holding fluid in mouth or drooling which isn’t a good sign at all .

yeah we’ve been given details of support groups and have been referred for befriending through Marie curie too . Very very difficult .