mothers dementia and impact on daughter

[hopeandpray]

I wonder if you have any wisdom to share. We live next to my parents. My mother (64) has increasingly bad dementia (severe dementia according to Dr brother). My daughter now 10 wrote a poem when she was eight describing it as 'a dinosaur walking among the flowers'. Granny appears to have taken a turn for the worse. On my brothers visit from Canada she invited us all for dinner forgot and went to bed. Luckily we'd cooked a contribution so padded it out to cover up.

My concern is my lovely daughter. She has had a close relationship with her granny all her life. I never had to deal with anything this grim growing up and I had siblings, I do feel she needs some protection. Ironically although we can't afford to move (house prices on an island are HUGE) we could afford to send her to boarding school. She has one year left in primary and the good co ed grammar doesn't start until 14. She is very very able with a school that acknowledges it can't meet her needs and that she finished the curriculum a good while ago. We keep her there for lovely friends and community socialisation.

I do want to maintain what they have as far as possible. Trying for occasional trips with Granny and Grandad. They had a regular date on Thursday after school but Granny has let her down several times leaving me to cover up. Fortunately she's going to Canada with my brother during school time so I've been able to organise thurs care with a friend without confrontation/hurt feelings.

I wonder what you think. Please be gentle. Stuff of nightmares literally :( .

So, sorry for you all, it's a terrible condition. How much have you told your DD about it ? What exactly are your concerns?

Thank you for your quick response. I think I'm terrified that one day soon Granny will no longer recognise DD. I'm worried that it will break her heart. She knows it will not get better and that it is sad and we need to enjoy time with Granny now. My mother also has a background of repeated sibling sexual abuse and I no longer trust her to protect DD from the knowledge of that. From what I've read the long term memory becomes the point of reference. She brings it up much and recently wrote to her younger brother to tell him.

She was a nightmare as a mother (bi polar) but since we came back 10 years ago has generally been a light and support. Boarding school would perhaps mean protecting DD whilst not running out on dad.

What a mess

I think I do need to get her away from the family. Perhaps I need to write it all up as a novel and we can fly away on the proceeds!

Poor you, what an awful lot to cope with. I had a gran and a great aunt with dementia, my Gran could tell you all about things that happened years ago, but not yesterday. She did get to the stage where she didn't recognise us, but it helped to know that it wasn't her fault, it was the illness that robbed her of the memories, and eventually her personality.

Would you have considered boarding school anyway, without this situation? I think you may need to limit/supervise the contact between them which I would imagine will be harder as you live so close. Maybe someone on The Alzheimer's Society forums may be able to offer some better advice.

I think you need to talk to DD, not only about your mothers dementia and how it will affect her in the coming years, but also what her wishes are regarding boarding school. Some children love the idea (think its Hogwarts) some hate the idea of being parted from their family, so find out how she feels, it may solve the problem if she likes the ideal.

Would the alzheimer society have any info on talking to children about adults with dementia?

Good luck anyway, you are in an incredibly difficult situation which sadly won't get better any day soon

idea !

Alzheimers society didn't even occur to me, thank you. Think I was imagining dementia as somehow more benign.

Will dedicate some time to finding out what to expect. That's useful about the idea that it's not her fault.

DD has mixed feelings about school, her best friends will both be going to the same one locally but we'll go and visit and let her decide. Maybe we will have to go the other way and bite the bullet and use our remaining time with Granny to save for renting.

D'you know it's been useful to have it labelled as a difficult situation. Am guilty of head in sand I think because she is a bright funny woman. Poor dad.

I hope you can all find a way to cope, it's a tough thing to watch someone that you love go through. My gran wasn't aware that her condition was deteriorating, but for us it was a like a process of mourning for the person that she used to be. That said, even to the end there were still times when her 'old self' would be there, if only for an hour or two.

dr google I wonder if you'd be happy to relate your own experience? How old were you when your Gran started to deteriorate? do you think your parents protected you from it enough? Did you see her much? Found myself in tears today imagining her further down the line. Don't worry about answering if it's miserable to think about. there doesn't seem to be a clear idea of how long we've got. Amazing tho how clear symptoms are. i remember becoming quite irritated a few years ago because she kept coming round asking if we'd taken books/forks....and it's there on the website link!

No, it's not miserable to think about at all, she was a lovely lady who had a wonderful life, the dementia could not take away the memories of her at all.
I would have been about 13 when she started to get worse, my Mum was always very matter of fact about what was happening to Gran, if she did or said odd things I knew that it wasn't her, it was the dementia .

She lived about 30mins away from us in a nursing home, we visited about once a week. When I was younger Mum would always go with me, she became very good at 'steering' the conversation around difficult topics and trying to keep things light and when I was about 15, I would go on my own using the same tactics. No point in arguing or trying to correct her about things as she'd get agitated and upset and it would all be forgotten again as soon as you left. I used to love to get her to talk about my grandad and how they met and happy times from her childhood. She seemed happier talking about the past, she could tell you all about what happened in 1935, but not what she'd had for lunch today. It helped us to know that she wasn't sitting worrying about things , some weeks she had lots of visitors and when we visited she would say "i've not seen a soul all week"!

Try not to jump ahead of yourself, for us the deterioration was very gradual, she lived 20 years from us first noticing symptoms!
Try and take each day as it comes, these are just my experiences, it's different for everyone, feel free to PM me if you need to chat.

My eldest DD is 14 and my youngest is 4, their Nana (my mum) has had dementia for several years and I didn't even think about protecting them from it TBH. Not that i'm the most considerate person, though.

If I were in your situation, knowing the age of your DD, I would explain it, as gently as possible, because given the closeness of the relationship she has a right to know. IMO, anyway. Then you both can discuss about going to boarding school in that knowledge. The abuse issue does complicate things I admit, but maybe someone else has a good suggestion.

thank you

I got in touch withe a local support organisation that I found through the website you suggested DrG..big thanks. Received a very calm and thoughtful and comprehensive response saying each progresses differently and as you say not to jump ahead/treat her differently. There are memory and music groups here but really cannot see proud parents anywhere near them! We'll see.

SupriseMuffins I think maybe I'll just ensure someone else is there to steer the conversation/whisk DD away if ness.

hopeandpray - I'm sorry, that sounds like a hard situation. I grew up with some similar elements, and I think that boarding school could be a good solution. What does your daughter think abotu boarding? Do you think you could talk to her about the reasons for sending her to boarding school? She might appreciate the chance to talk openly.

It's tricky isn't it. Generally I talk to her about most things. The abuse though is something else. My mother told me in a particularly horrifying letter when I was a teenager. Someone said to me many years later that she needed to protect her children from the knowledge. i remembered driving home tonight that I was infamous as a boy hater at school! I also remember a chemistry teacher saying he thought I had a problem with men..and sadly I think it's true. I've sabotaged relationships with generally kind men, my current partner is femme and I didn't have another child really concerned about having a boy! Bit shocking to write it down and realise the extent of it. My mother made me read Germaine Greer when I was 14 'women don't realise how much men hate them' add all the media reports of paedophilia, murder of women etc etc....sigh.

So I think in part I want to protect her from my own attitudes as well as any revelations from my mother. I also hope that boarding school could provide proxy siblings and family healthier than ours. I love her very much though and not so unselfishly that I wouldn't find it hard to let her go at only 11!

So in terms of discussing it I suppose there's a limit. We're going over to the UK soonish to visit a shortlist and see what she thinks.

Were you protected enough?

Hopeandpray - sorry not to get back sooner.

i wouldn't necessarily talk to your daughter about the abuse. I would talk about the dementia and the thought that it is going to get harder and harder for a while and that you feel she could have a more normal time at boarding school, and that you think the diversity of contacts at boarding school would be good for her. if a decade down the track you feel it's right to talk about the abuse and the effect it may have had on your worldview, i'd do it then.

As the stay-at-home child too isolated form my peers by my upbringing, I was second-in-command (to my extremely depressed and bitter mother) ambulance-phoner nurse-getter poo-cleaner underwear-fetcher etc etc for Mum's demented, ill and depressed mum. It lasted all my childhood. My grandmother hated me passionately and loved my sister (who escaped home as much as possible by being rampantly over-socialised, too young). My mother is now very like her mother, though physically healthy - down to having the same relationships with me and my sister.

Boarding school would have been a blessed release. University was absolute heaven - and I have been home very little since then.

footle - that's admirable :-) - and i think it's what my grandmother would have wanted too, if the illness/depression hadn't essentially removed all her sense of agency long before the dementia set in (this was over about 25 years).

i guess it really depends on HopeandPray's situation and on what her daughter thinks about boarding school.

I know that many parents loathe the idea of children boarding, on principle, but I went to a school where the boarders genuinely seemed to enjoy themselves, and 20 years on, they still seem to think they enjoyed themselves. They did seem like a big bunch of siblings, at least to a day girl outsider like me.

They didn't seem to have much sense of privacy or need for time alone (sleeping 4 to a room from 12 to 17, single rooms in the final year). I think I would have found the lack of peace quite disturbing. But perhaps i wouldn't have felt the need for peace quite so much, had i not been constantly exposed to stress and worry, a depressed, burnt-out mother, and my grandmother spitting demented venom at me.

Has your mum actually had a formal diagnosis, other than from the medical brother? If not, she needs assessed by a psychogeriatrician.

I think it's awful that you're thinking of sending your daughter away to protect her from her granny's illness. Your daughter is old enough to understand that dementia will cause 'inappropriate' behaviours. You can set some ground rules that your DD is not allowed to be left alone with granny. Harshly, to protect your private life, granny may need to be banned from your house.

Don't shy away from placing her in a nursing home. Your mum has a disease, that eventually will need a team of professional carers. With dementia, don't shy away from getting help/diagnosis/support early. Don't feel that you're failing because you cannot cope with the falls/aggression/night time wandering etc. I would say that when your mum starts to wander or wake at night, then that is definitely the time to hand her care over to professionals, before a crisis develops.

All harsh, DH has been through it all with his dad.