Huge anxiety over calling my Mum...so sad right now.

Justcallmebebes · 24/06/2021 12:09

I'm so sorry - this is very hard for you, especially being so far away.

Can you facetime when another relative is there so you have someone to jolly things up a bit (if that makes sense). I have similar with my MIL but we can visit so we always go in twos to keep things going as otherwise we'd just sit and stare at each other as she can't communicate much anymore

Ostara212 · 24/06/2021 12:15

This won't be a popular response but here goes

My nana spent the last year of her life in a home, with dementia.

Mum, her daughter, stopped visiting quite soon after.

I went, and she'd say "sorry, I should know you, you look familiar" and then it was just like I'd interrupted whatever dream world she was in.

Prior to her decline, mum went every day and was told "you're neglecting me, you haven't been for ages".

At the end of it all, we could choose how many people needed to be upset by it. Nana couldn't be helped, but that horrible feeling, which I couldn't shake off, would bother me for days after.

Do you have to call? Will she know if you don't? Would letters be good - you don't have to say much, but a note on pretty paper might be nicer for her?

My parents have agreed that if they stop recognising us, we stop visiting!

Ozanj · 24/06/2021 12:20

Facetime calls while other relatives are there tend to be better all round. My gran had dementia and like a PP Mum stopped visiting towards the end because she wasn’t herself; I still did and the only thing that got me through things was having other family around me. Her older sister (still alive and still with her marbles intact) insisted on turning up during the visits and after 30mins would whisk us off to unwind. It was the best part of those visits

Original poster

FortunesFave · 24/06/2021 12:37

Thanks all...I can't bear Facetime either because she doesn't look like herself at all. Letters might work though...the nurses would read them to her I suppose.Ostara212 thank you for that suggestion....and for making me feel a bit less awful about it all!

OP posts:

lfYouSaySo · 24/06/2021 12:50

I agree that letters are lovely especially with photos - old ones if you have them of you as a child, her as a young adult etc. And any music you know she liked, particularly when she was younger. Anything that may give her comfort or remind her of good times, even if she isn't quite sure why they remind her of anything.
I struggled to see my grandma in the end as she was not herself and I knew she would want my memories of her to be good ones. I'm so sorry, this must be so hard for you.

PeanutButterFalcon · 24/06/2021 12:50

We read letters to our residents and will reply with them if they can. Add your address to the letter. Some families phone but do not talk to their family member and some will spend hours on the phone with them. Some will ask to talk to the same member of staff for continuity. Some FaceTime/zoom and ask for us to be present as well or are alone. We talk about the day and plans we have. Some visit and some don’t. Some email for updates and some don’t. We don’t judge we understand it’s not the same person you knew, however I’d definitely recommend talking to the nurses and explaining how you are feeling. They may have an idea on how to communicate better with your mum/the home. Xx

PotteringAlong · 24/06/2021 12:54

I would also say that you need to, separately, make sure that your siblings know how very grateful for all the practical stuff that they do for your mum and, if there is anything that can be sorted online etc make sure you volunteer for that.

It can be incredibly draining dealing with a relative with dementia, even when they are in a home, and “phone calls are causing me too much pain” might be enough to give your siblings the rage. Just be mindful of that…

Original poster

FortunesFave · 24/06/2021 12:59

@PotteringAlong

I would also say that you need to, separately, make sure that your siblings know how very grateful for all the practical stuff that they do for your mum and, if there is anything that can be sorted online etc make sure you volunteer for that.

It can be incredibly draining dealing with a relative with dementia, even when they are in a home, and “phone calls are causing me too much pain” might be enough to give your siblings the rage. Just be mindful of that…

I don't need to be made to feel more guilty than I already do thank you. There's no need for your snipey little comment here. I am obviously here for support not 'advice' that anyone but a fool would not have considered.

OP posts:

Ostara212 · 24/06/2021 13:07

@FortunesFave

Thanks all...I can't bear Facetime either because she doesn't look like herself at all. Letters might work though...the nurses would read them to her I suppose.Ostara212 thank you for that suggestion....and for making me feel a bit less awful about it all!

Oh gosh, if she doesn't look herself it's even harder

The content of the letter doesn't much tbh. You can just copy a nice poem. I used to send postcards of her favourite National Gallery pics, she was allowed to have them blu tacked to the wall.

Nice notepaper is the thing. I'd avoid photos as they can be distressing if she gets a sense of memory from them that she can't quite identify.

Original poster

FortunesFave · 24/06/2021 13:12

Thank you Ostara121 good point about the photos...I was thinking of nice notepaper too...or pretty cards etc. I've just made the call thanks to the help I've had here encouraging me! It wasn't great but it's done now and I think I'll look for nice paper etc tomorrow.

I have a lot of other issues going on in my own life right now so it's all a bit of a struggle but I am greateful shes in a lovely place...the staff are wonderfully kind according to my sisters and her siblings. So that's a LOT to be grateful for.

OP posts:

Ostara212 · 24/06/2021 13:39

I totally get it

gonow · 24/06/2021 14:03

Yes to photos and pretty cards. My mum doesn't know who I am when she sees me anymore and although she takes calls from other relatives she's not really got a clue who they are either. She's just being polite when she talks to them. Does she like animals? My mum will go on and on about a card with a picture of a cat on it and seems to like cuddly toys now too.

EvenMoreFuriousVexation · 24/06/2021 17:07

So sorry OP. Dementia is so so hard all round, I honestly think it's the worst way to go, both for the sufferer and for their loved ones.

What I found with my Grandma was best to avoid talking about shared memories - she would mainly not know what I was talking about and would become distressed that she didn't. I did a lot of reading to her, mainly children's books and poems that she had read to me as a child - A. A. Milne, Kenneth Grahame, Ogden Nash, Edward Lear, Michael Rosen. I read carefully-selected excerpts from Watership Down and Duncton Wood, concentrating on passages which reflected the authors' joy in nature - a joy which my grandma shared in abundance.

No matter what you say to her, there will be times when she will understand, and times when she will not. And sadly the latter will become more common over time. But that is not your fault - allow yourself time and space after a call to have a cry, go for a walk or just sit with your feelings for a bit. I always avoided scheduling a call immediately before another activity.

Take care of yourself OP 🌹

reader12 · 24/06/2021 21:59

@PotteringAlong your comment didn’t sounds snipey to me. Dementia is horrible and can really strain all the other relationships in a family.

reader12 · 24/06/2021 22:01

OP I’m sorry you’re having to deal with this from so far away, it must be heart breaking. We’re a year or two behind you with a family member so have no advice, just

LizzieW1969 · 25/06/2021 00:28

I’m so sorry you’re having to cope with this from so far away. It’s a good idea to write letters and cards to your mum.

Mogs43 · 25/06/2021 01:19

@PotteringAlong I am sorry you received the response you did. It didn't sounds snipey to me at all - just an honest account of how some will feel. I hope it didn't bring you down.

Anordinarymum · 25/06/2021 01:21

@FortunesFave

Long story short, I live in Australia and Mum in the UK. She's got dementia and has been getting progressively worse over the past year.

I've lived abroad for 5 years. She has my siblings all around her plus her own siblings who all visit and care for her very well indeed as well as keeping me informed.

But as she's got worse, phone calls are incredibly hard. Obviously she's not very clear in conversation...she's been in her own home with three visits from carers plus relatives but recently went into a home.

For about a year now telephoning her is causing me so much pain. She naturally struggles to talk but it's killing me hearing her repeat herself and get confused and now she's gone into the home it's worse because I have to speak to a nurse first and then its so hard to say goodbye.

I last saw her two years ago which I am thankful for as she still knew me properly and I am grateful I could do that before coronavirus hit.

Please can someone give me a bit of help or advice on making it easier? I keep putting off calling because it's so painful.

Keep calling her because one day she will forget who you are

starrynight21 · 25/06/2021 01:26

I agree with pp, send nice pretty letters, old photographs of family members / houses that you've lived in. You don't have to say much, just that you love her and miss her.

sandgrown · 25/06/2021 01:27

My SIL is in the final stages of dementia and being cared for at home by my brother with carers . I was unsure whether to visit and put more pressure on him as we live away so we tried a zoom call today . There was a flicker of recognition but the thing that got the biggest reaction from SIL was seeing our dog who she loved. It’s a very hard situation

tava63 · 25/06/2021 01:28

@PotteringAlong I thought your post was very thoughtful. I live in another country to my family and what you said rang very true to my experience. Best wishes OP in finding a better way forward.

Chisandbiscuits · 25/06/2021 01:47

@PotteringAlong

I would also say that you need to, separately, make sure that your siblings know how very grateful for all the practical stuff that they do for your mum and, if there is anything that can be sorted online etc make sure you volunteer for that.

It can be incredibly draining dealing with a relative with dementia, even when they are in a home, and “phone calls are causing me too much pain” might be enough to give your siblings the rage. Just be mindful of that…

I thought this was thoughtful, relevant post @PotteringAlong and did not deserve the reply you got. Being the one dealing with the daily practicalities of caring for someone with dementia is utterly soul-destroying. The more support you get from others (in whatever way they can give it) the better. Families can be completely torn apart by the strain of it all.

adeleh · 25/06/2021 01:54

We are in this position with my Mum. I made her a photo album of pictures from when she was a girl and special photos of her dogs, children and grandchildren. She loves it and carries it with here everywhere.
She also finds phone calls very tiring, as she has to work so hard. Letters and photos might be better for your Mum.
I’m sorry. It’s a horrible situation.

Chunkymenrock · 25/06/2021 01:58

@pottering along, I thought your comment was valuable too and offered from a supportive place.

1forAll74 · 25/06/2021 02:42

I would say writing simple letters, and sending a few old photo's. maybe of you and your Mum in earlier days.

I used to work in a care home years ago,with patients who had dementia, and a few ladies were now in their own worlds so to speak. But occasionally, two or three of the ladies became quite lucid when they were staring at the TV when any old type music came on, and they would be tapping their slippered feet, and singing along really well , remembering all the words to the songs, that they must have suddenly remembered.Then they would go back to being quite silent again. It was all very touching to see.