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Can't bear talking to her.....

(20 Posts)
Trooperslane Sun 09-Mar-14 11:05:53

My Mum has 3 to 6 months to live. She has Lewey body dementia.

She's in hospital being very well cared for. I live a flight away from my hometown and have a small baby. (Baby isn't allowed on the ward so visits have to take place in another room). I'm going back for a week once a month for the foreseeable future.

Mum has very limited movement and gets quite distressed sometimes being moved to come to the phone. She won't use her mobile any more.

I also suffer from anxiety (in part because of what's happening to Mum). Seeing her is even harder than trying to speak to her - she says very little.

When we are back it's horrifying seeing her basically starve to death.

The guilt is horrific - I just can't help her and I feel I should be with her 24/7. I'm sitting here in tears because I've built myself up all morning to call the hospital and they're not answering - I know they're just busy.

Should I be there 24/7? I'm married and am trying really hard to build a network here and being back is incredibly hard.

Sorry it's long.

I feel like I'm putting my needs before hers and I'm so confused about what to do.

JeanSeberg Sun 09-Mar-14 11:13:49

So sorry to hear this, my mum died last September from dementia.

The guilt is 'normal' if that helps you at all. I used to ask myself what my mum would have wanted me to do had she not had dementia. And I know in her case it would have not to beat myself up or feel bad about not spending every free minute visiting. The main thing is your mum is well-cared for.

Perhaps don't worry about the phone calls as it causes her distress.

thanks for you. Keep posting here, you will get a lot of support.

caketinrosie Sun 09-Mar-14 11:15:38

Hi trooper, I'm so sorry to hear your news. Dementia is a vile condition. I lost my dad to vascular dementia 3 years ago. When he was lucid I visited but every visit was harder than the last. I hated every minute if it and eventually he got so ill that I was visiting a sleeping man so was sitting there just staring at him. Dementia is hardest on the family and until you go through it no one can fully understand the pain of seeing your loved one disintegrate before you. My advice for what it's worth, is visit as often as you feel up to it. Don't feel guilty if you can't cope it's immeasurably difficult. Do what feels right for you and don't let anyone judge you for it. My hand for holding over here. thanks brew

magimedi Sun 09-Mar-14 11:17:58

My Mum had dementia & dies 15 years ago. I also lived a flight away & was not able to visit that often, maybe every 6 weeks for a few days.

I remember feeling guilty, but as she didn't know me at the end I really don't think it made much difference.

As Jean wisely says, think of what your Mum would have wanted when she was well.

You are doing a lot of grieveing now & have a living bereavement to cope with - it's really hard and don't be too hard on yourself.

flowers

Trooperslane Sun 09-Mar-14 11:19:03

Thanks Jean and Rosie, that means a lot

Sorry for your losses too.

One thing I'm trying to keep believing is something a very wise friend of my MILs said - and I think Rosie mentioned (sorry on phone and can't look back) was that it's harder for the family.

I really hope that's true and thank you so much for the speedy replies.

thanks

Trooperslane Sun 09-Mar-14 11:20:27

Living bereavement - good way to describe it. Thank you Magi and sorry for you too thanks

whataboutbob Sun 09-Mar-14 20:39:13

Hello, my dad has alzheimers and while he is not as Advanced I have been supporting him for the last 4 years or so and guilt has been there at every step of the way. Basically if I dig deep into it it' s guilt that I will not care for him 24/7 till the end. I have had 20 months of counselling and that has helped. I know that there is no benefit in me being overwhelmed and sinking into depression, which Is undoubtedly what would happen if I went to live with and care for him. It's living with the sadness of his condition while not being utterly contaminated by it and letting it seep into other areas of my life that is the challenge. I think that is something that all of us with a parent with dementia have to do. I wish you all the strength possible in this tough situation.

Trooperslane Mon 10-Mar-14 07:32:16

Thanks Bob. You too thanks

JeanSeberg Mon 10-Mar-14 08:51:10

Wise words from bob. If you can put your mum's alzheimer's in a separate 'bubble' it can help - easier said than done I know!

Be kind to yourself, take it one day at a time, don't worry about what tomorrow may bring and do lots of nice things for yourself, however simple.

throckenholt Mon 10-Mar-14 08:59:23

It is something a lot of people go through. You can't abandon your life to enable you to do what you think you ought to be doing for your parent. If you can step back from it, you will know that your parent would not want or expect you to - but it is really hard to see that when you are in the middle of it.

If it is any help - I think in the later stages your mum is not likely to be very aware of time, and whether you are there all the time or not (I know my mum wasn't). Happy to see you when you are there - but very often falls asleep when you are there.

You are doing the best you can - you can't ask for more than that. Just do what you can cope with and cut yourself some slack.

Trooperslane Mon 10-Mar-14 09:15:04

Thank you Throcken.

What kind posters you all are x

Trooperslane Tue 11-Mar-14 09:29:17

Thanks again guys.

Was having a wobble again this morning and your posts are really helping as I re read them.

smile

JeanSeberg Tue 11-Mar-14 09:44:48

That's good to hear, keep posting and we will continue to support you. thanks

When are you planning your next trip to see your mum?

CrumblyMumbly Tue 11-Mar-14 09:47:54

Hi, Could you send cards or letters regularly so the nurses can read them to your mum and she can look at them in case she forgets you have phoned? Also would be lovely to take a photo album next time you go for your Mum to have with lots of family photos or places she liked. That gives you things to look at together and remember - or at least have something to talk about. Is there any music she likes that you could play her - maybe even down the phone? Sorry, I know it's very hard - be kind to yourself.

Trooperslane Tue 11-Mar-14 10:38:49

Crumbly, I send her a card with photos of dd most weeks.

Jean, back at the end of this month. It's a trek and very emotional but so worth it.

Trooperslane Tue 11-Mar-14 10:39:21

Posted too soon!

Crumbly - great idea re the album. Will sort that next time grin

Needmoresleep Tue 11-Mar-14 11:23:10

Is there anything she is still able to enjoy? Perhaps staff have some ideas?

Flowers perhaps or music? Or visitors, even volunteers that she does not know. Or photos, which can be placed in her line of sight. . There was a bird table outside my mother's window when she was in convalescent care put there by the relatives of the bed-ridden lady in the next room.

My mum has never been very family orientated, and so is unlikely to look to me for emotional support or gain much pleasure from Grandchildren and their achievements. The latter is a real pity, but she did not invest the time earlier on when she could have done, and so does not really know them. She also lives two and a half hours away...when traffic is good.

However she is very social and gets bored quite easily. She loves her life in her sheltered housing, within a community and yet with support to cover the skills she has lost. Now things are settled there there are far fewer things that need my presence. I am lucky perhaps that I am looking after property for her, so am able to call in rather than making her the focus of my trip. I have found short visits to be a lot less difficult and probably the same is true for my mother, though the journey is a pain, and this is without a baby. She is pleased to see me but half an hour is enough. I am very conscious of her capacity slipping away and so plan to stay near her for part of the summer and taking her on outings, as this may be the last year she will have enough orientation to enjoy going out. The focus will be on things she enjoys, not about her seeing me.

If she has been more family oriented and the emotional ties were stronger I might have felt guiltier about not spending much time with her. Instead I am focussing on things which matter to her, and which I can do from home, eg sort out transport so she can get to church, negotiate a lead carer who she likes etc. When the time comes I will research the right dementia care setting for her.

This is a slow bereavement. If your mother no longer gets much pleasure from your visits, you may need to accept that this part of her has died, and that you focus on what she does enjoy. Photos, flowers, favourite things from a happier time, that remind her that she is loved.

It sounds tough. A new town, baby and a dying mother. I echo what others have said. Do what you can, but look after your other priorities as well. Guilt is not helpful.

Trooperslane Tue 11-Mar-14 20:29:34

You know, I joined mumsnet because I was a bit bored (but in love) with a new baby.

You lot being a whole new dimension I hadn't even though of

Thank you again lovely posters.

brewIthanks and several winewinewinewinewine for you x

JeanSeberg Tue 11-Mar-14 21:34:20

Good to hear.

My mum also loved music, Russell Watson in particular and Susan Boyle! She had a CD player and once she could no longer work out how to use it herself, I made sure the staff put it on for her.

She also used to go line dancing so we had a cd of country music and we used to have a silly dance round the room which she loved. grin

I felt better (less guilty) for trying a few different things even if she probably didn't get much benefit at the end.

Sorry for rambling on!

miggygreene Mon 24-Mar-14 06:51:55

If I were in your wife's shoe, I understand. She has to understand what you're going through. You should be on your mother's side on these days because she needs you. Just like you need your mother when you were a kid! smile

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