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 .

Holding your hand from afar, dementia is a brutal disease.

Thank you, I need to go but I’m terrified . I keep thinking I’m going to have some sort of collapse on this bus in front of everyone . I’ve got good support around me for after but I’m so scared . Her form of dementia is particularly rare and complex which doesn’t help at all .

I’m so sorry. It’s such a tough thing to do. Have you something you could show her/ talk to her about? Pictures? 🌺🌺

A daughter of a person with dementia here.
If you need it, I give you permission to decline to visit again. It is okay to not go. It IS a brutal disease, and the effects upon family are not to be underestimated.

I hope your visit goes as well as can be expected. (non mumsnetty hug)

I’ve got photos yes, she doesn’t recognise them now but we’ll give it a go .

my sister has said she’s not visiting at all which is well within her rights and probably the right decision (she has a learning difficulty) but I don’t feel I can I do that myself .

That’s what family and supports are saying, make this the last visit .

Oh dementia is awful I used to work in dementia care, I'm not being callous ,but when you say ,you need to see her is it for you ?
Because sadly if your mum doesn't recognise you it can be very distressing for relatives ,many relatives couldn't face seeing their much loved relatives ,when it had got to stage where theie relatives didn't recognise them ,and i totally understood why .

Oh goodness - my heart goes out to you. I get the dissociation/agoraphobia/claustrophobia thing and it's horrible. Try to ground and distract yourself for the journey at least - a helpful little exercise is to look for five things you can see, four things you can feel, three things you can hear, two things you can smell and one thing you can taste.

Dementia is a cruel, cruel bastard of a disease. I hope you and your family can support each other through the visit

When my mum got to the last stage of dementia I used to go and sit at her bedside. Took her scented handcream and did her nails which she seemed to like and talked about the family. To be honest much of the time I was playing games on my phone as I sat by her. She slept for the majority of the time and my phone kept me sane. Protect yourself.

You are incredible OP. Dementia is pure evil in what it does to our loved ones. You are doing something very hard. If you feel unwell, deep breaths and sips of water - treat the journey as separate to the visit. One thing at a time x

Thoughts are with you OP.
Everyone would support your decision to make this your last visit. I can't imagine what it's like. Well done for making this journey for her as you are really suffering.
Sending love !!

I hope the visit went well and that you are holding up okay.

It was very, very hard - went to see her today . I don’t think I can do that again . She is very, very unwell; frail, skinny, ill and elderly looking and it was horribly distressing . She had no idea I was there and it was awful, I felt horribly claustrophobic and suffocated and faint . I feel terrible but I can’t do that again . She wasn’t upset or distressed herself but it was just the horrible shock . Like the wind knocked out of me . I don’t want to go back and I think that’s what my mum would want too .

Don’t go again. Don’t feel bad about it either. Try to remember your mum when she was well, because that’s the mum you know and love.

Please don't feel guilty I have nursed many patients with dementia its a cruel and unforgiving disease, sadly if your mum doesn't recognise you ,she won't be getting anything out of you visiting ,but you will be breaking your heart if you go and see her ,you can keep in touch with the care home regarding her wellbeing, but don't feel like you have to put yourself through anymore heartbreak .

No I don't think it is easy I think the decision not to continue to visit a relative with dementia is an incredibly hard decision and not one that anyone takes lightly. I stopped visiting my DGrandma because not only did she not recognise me, she would get agitated and scared about who I was and what did I want and was I going to take her prisoner. Sometimes no one benefits from the visit and therefore it is better that they stop but don't ever think that is an easy decision.

You have got my deepest sympathy OP
My mother had dementia.I think it is the cruelest disease. It took 12 years for her body to die. Her mind had already died.She failed to recognise any of us in the last years and would tell us to go away.

Who does it benefit though ,,?
Not the Op,s mum who doesn't recognise the Op and certainly not the Op who would have to be distressd seeing her mum who doesn't recognise her it's a bloody cruel disease

What a cruel and abhorrent comment. You clearly haven't been in the ops shoes, at her age.

I hope she can forgive you.

OP, putting myself in your mum's shoes for a minute... if I was her, I really wouldn't want you to visit anymore. I can't imagine my daughter having to visit me, and not have me recognise her. Honestly the idea breaks my heart and I would want her to stay away and instead concentrate on keeping good memories of me alive and on building her own life and family.

Which is great progress when you think about it, isn't it? New generations able to keep the love alive for their loved ones in their hearts, life their lives the way their mothers/fathers would want and not experience unneeded misery through a sense of misplaced duty.

The youngest person I ever nursed with dementia was 37 very rare but it happens its such a cruel disease wether somebody is 37 or 87 ,so cruel on the families

Mine was a young teen with Niemann Pick, a truly cruel disease. OP, it is never easy to make a decision like this. I know if I were your mum I wouldn't want you to visit me again either .

As a mum, I don't want my adult children to be distressed by visiting me if I am so unwell that I don't know them.
You have permission to make that your last visit , OP.