To ignore family wishes and keep DD from visiting my dad?

[permanentlyexhaustedpigeon]

My Dad has early-onset dementia (have posted about this on the Elderly Parents boards) and a variety of neurological issues, which mean he lives in a specialist nursing home these days. His symptoms fluctuate quite a lot: on good days you can have a fairly normal conversation with him for a while, even if he's a bit forgetful; on bad days he has no idea who I am, hallucinates and wanders around a lot. His memory is badly affected and he can't often recall events in the recent past.

DD is 6, and last saw Dad before his admission to hospital. She is scared of 'Granddad acting weird', which is understandable, and I haven't taken her to visit him since he became ill, though I try to go both on my own and with DH as often as I can. The other residents of the nursing home can be extremely unpredictable, and while they're well looked after, I think the shouting, swearing and loud noises that occasionally happen would be hard for her to understand, never mind that Granddad would almost certainly be 'acting weird' even on a good day. (Because of his condition he is not allowed out of the nursing home unless accompanied by at least one carer)

Unfortunately, Dad has been saying repeatedly that he wants to see DD, that I never visit (I do) and he misses both of us terribly. Our other relatives are convinced that my taking DD to see Dad would make a massive difference to his wellbeing and that she 'won't have a problem' with it.

I really don't think it's a suitable environment for DD, nor do I think it will make a lot of difference to Dad in the scheme of things. Other family members disagree. AIBU?

My vast experience of homes makes me think you should not take her. In the 5 years my mum was in a home, I never saw a child older than a toddler visiting. If you can arrange to meet outside of the home that would be better.

I was taken to see an elderly ill relative when I was about 7 and it scared the shit out of me. I had to be taken out because I nearly fainted and it instilled a life long fear of hospitals for me. I can still smell it now when i think about it and it makes me feel queasy.

So much depends on the PWD and the particular child. Are you confident that he'll recognise her?

A dd of mine went to see my mother with dementia on her birthday, with flowers and chocolates. Went up to her with a big smile 'Happy Birthday, Granny!

Reply was a very grumpy, 'I'm not your granny!'
Butt dd was long grown up and knew the score, so it didn't matter.

What I think I'd do in the circs (if it's possible) is have another adult with you, so if things are at all difficult the little girl can be quickly taken away. Dementia can be very unpredictable from one day to the next.

If things did become difficult, I should imagine that a 6 year old could understand that poor old grandpa has an illness in his brain, he can't help it, so we must try not to get upset.

You have had some great advice. The decision has to be your own, based on knowing your DD and not down to pressure from relatives.

If there is a quiet, family room and you can visit on a good day (could visiting relatives or care staff alert you to one?) with somebody who can take DD if it gets too much then it could be manageable in terms of other unpredictable residents. Or are there grounds you could all sit in? If the visit is too upsetting you could review whether to do again/differently.

YANBU, you need to consider what memories you want your Dd to have of her grandad and act accordingly. I think that you've made the right decision, hard though it is

Can you not ring up and see if he is having a good day?

Astriana.

That's sad you never saw a child older than a toddler in the home. Why?? When a child lights the place up. The old and the very young often have so much in common. Having children around is how the world is meant to be. We don't stop being social creatures because we get a bit forgetful, cantankerous, old and smelly.

Whoknows

It sounds as though you were very ill prepared. Parents in general didn't used to talk to their children as they often do today in decades gone by. I was maybe 3 when I visited a dying great aunt in hospital. I obviously was much younger so lacking in the awareness you had. She gave my brother and me the largest tube of fruit pastilles I had ever seen. A nice memory.

Take her .
Before it's too late

My elderly aunt spent her last months in an EMI unit. I would not have dreamt of taking my children there. There were a number of extremely unpredictable residents there and I think a small child would have found it a traumatic place to visit.

You know the place - trust your instincts.

Please take her.

My granny had dementia and was in a nursing home with a lot of 'scary' (to my kids) patients.
My biggest regret is not taking my kids to see her more. She passed away last year and I would give anything to be able to go see her now.

Ive been talking to my mum about this recently. I was 16 (so much older) when my gran died due to a brain tumour. The symptoms mimicked dementia. My choice to keep visiting her to the end & it was the wrong decision. 20 years have passed and I can still remember the FURY in her eyes as she looked at me on the last day. It took years for me to shake the feeling she hated me. Even at 16, I was too young to handle that and my gran would be devastated to know thats my last memory of her.

My mum has made me promise not to let my children see her if the same thing happens to her - I am to choose a point and take them for a goodbye visit. She doesnt want the good memories to be blotted out.

So for me it would very much depend on how the dementia was affecting him, but if shes frightened I wouldnt take her

Anecdotally I think kids are more memorable to dementia patients than adults. When I was about 6 too, an old relative with dementia had forgotten who all the adults in his life were, including his own daughters, and had started confusing them with long-dead relatives from his youth. But for whatever reason he never got confused as to who I was, and would just bounce me on his knee and feed me biscuits; normal kid-granddad things. I think it made him happy.

Take her.

With kindness I think you're projecting a bit here.

Mummyoflittle if it's a dementia unit a lot of people there won't just be "a bit cantankerous old and smelly" (though of course they shouldn't be smelly as someone else washes them) nor just a bit forgetful - you are minimising what advanced dementia is in that post.

Lots of people with dementia are still quite sweet, but others are aggressive, will physically grab you as you pass, will be shouting or swearing or crying, will roll over your foot or backwards into you in their wheelchair, will start fighting with other residents, will accuse you of being in their house and shout and swear at you to get out, even though 5 minutes earlier they told you that you were an angel and asked you lucidly to sit with them and have a cup of coffee, will accuse you of stealing something they last owned 60 years ago... Lots are non verbal and frustrated or non verbal and seemingly unaware of their surroundings.

It's not just slightly grumpy people with their slippers on the wrong feet who can't remember whether it's Wednesday or Thursday...

There is some really good advice and suggestions in this thread.

My mother has had dementia for 10 years. She still lives at home. She has until relatively recently enjoyed visits from my son, who has enjoyed seeing his nanny, although after the initial very short period, he does leg it into another room with his IPad - not just normal boy stuff, but she has never really been able to sustain interest and then ignores him completely. He has coped quite well with it, and has quite a sensitive caring personality. He also has a serious medical condition himself, has been in hospital a fair bit, and pretty much takes all sorts of disability and unusual behaviour (as long as it's not very violent) in his stride.

That said, her condition has recently deteriorated, her behaviour has become very unpredictable, with aggression to me on some occasions. She no longer recognises me, or (on occasion) my son. My son has started to not enjoy the visits, and has become anxious, so now I either don't take him or OH comes too and can take him off. Some of the things she comes out with are distressing too, and have affected him - thinly veiled suicide threats, and very nasty comments about us and other family members, many of which are paranoid ravings - but it is particularly upsetting for my son to hear this about his granddad who he adored when he was alive.

TBH I am not very good with dementia, and it also puts me in a foul mood for the rest of the day, so, for various reasons, we are cutting back on visits - they no longer seem to do either of us any good.

In a care home, obviously, you have different issues. However, if your father has expressed a desire to see your daughter and has good days, when he is relatively lucid, then my feeling is he would get some benefit out of it. It really does depend. From my own experience, children can bring a smile to those suffering from dementia when nothing else can. That said, obviously you have to weight it against the effect on your daughter. If your daughter gets upset, or anxieties surface, then personally, I wouldn't push it. Yes, it is good not to be over-protective, but also important to keep happier memories, and deal with scary things at a speed they are happy with (and 6 is still very young).

Meeting on neutral ground away from the care home could be a possibility if you could manage it. However, from my limited experience, this can also be frightening for the sufferer (my mother can't stand the slightest noise and becomes super-cantankerous - we spent a very short and miserable family meal with her in Pizza Express with her hands over her head and moaning loudly). A family room if they have one may be a good idea though, I could see that working, or in the garden on a fine day if they have one - there may be some less threatening place in the home you could use?

I do think taking your OH and letting your daughter go off with him after a short time, or if things don't work out, would be a good idea. Maybe take a small personal gift, or leave a photo behind? Also the suggestion of associating it with a treat or pleasant experience afterwards is a really good one.

Only you know the (changing) personalities involved. However, do think about how to manage the goodbyes. My mother now has a habit of either getting very upset when we leave, or violently telling us to clear off and slamming the door in our face. It sounds really mean, but I have given up doing the goodbye thing. I just leave her in her chair, tell her in matter of fact way I am going and let her carry on watching Jerry Springer or whatever. She has no recollection I have gone, or was ever there.

It is I think doing the best you can for the personalities involved - a parting gift maybe, or getting one of the carers to break things up with a distraction - tea, I don't know, and it may not be an issue for you, but it can be beneficial to think of "what if" scenarios in advance, and do as much as you can to make things easier.

It is one of those situations, where there is no "right" answer. If you don't visit, you may regret that, but there are real positive reasons for not doing so - remind yourself of those if the guilt starts to kick in. If you do visit, yes, it may be upsetting - again you just have to play it by ear and think about the benefits. The reality is you may find yourself torn in two ways, having to negotiate a middle path that makes sense to you.

Listen to your other relatives, but don't be swayed by them. They don't live with your father, and they don't know your daughter as well as you do. You have to live with the situation, and any fallout, and it's your decision. Whatever you decide, it will be the right decision for you.

It is difficult. I am in simular situation. We try to gage good days. My children are a bit younger. When we do take them I get dh to come then they can visit for a while and then dh will take them outside for a walk. Its confussing for a child to see a loved one ill. Its upsetting enough as an adult to have a loved one not recognise you plus is upsetting to see loved one get visably destressed when they dont know where they are, who they are and who you are. I know my 5 year old who understands people are ill worries endlesly if she sees someone destressed.

OP, you know your child best and while our advice might guide you, it's no substitute for your gut feeling (which btw you should not have to defend to your family).
My sister and I used to go to visit our great grandma in a home. It was a fairly bizarre place to visit as a child (I was older than your child- I would have been about 9 when we started visiting but my sister would have been 5.)
We were not the only children to visit the home, there were plenty of others (this was mid-80s).
I remember vividly that there was a resident called Bobby. He sat in the foyer of the home and he would squeal whenever we came in and used to try to hug us. He would call my little sister Mummy sometimes, which was very confusing for her. We would then go and sit in great-granny's little room. Sometimes she would be in a twin room, which she hated. I remember her glee when her roommate died, and feeling horrified that she could be so cold. I remember her elation when she was moved to a single room. We would tease her that Jim, the resident lothario, had the hots for her. Increasingly, she would ask the same three questions repeatedly to us (maybe 5 or 6 times each visit) and we would patiently answer. Occasionally she would sparkle, and there would be a glint in her eyes, and we'd know she was still there. She was a feisty lady in her time. However, it was really tough sometimes- upsetting for my mum and grandma, and confusing and bewildering for us- depressing and grim, even. However, as a family we still visited. My mother and grandmother would explain to us that this was what family did. That one day we too would become old, that life is complex but can still be rich and have meaning, even when you are old and suffering from dementia.
As I became a teenager, as you'd expect, the visits would become a complete chore, because which self-respecting teen would spend their Saturday afternoon in a piss-infested nuthouse when they could be flirting with boys in town. But we still went weekly, nonetheless. By this point, my great granny had lost her only daughter to cancer- my beloved grandma and my mum's mum. We couldn't leave her now. Her decline didn't ever seem very marked because, much like a boiled frog, it was so gradual. In the end, she was nearly 100 when she died, peacefully, in her sleep. I think that, bar our visits, she would have merely existed for two decades in that place.
I am so glad that we were 'made' to go. It was never forced as such, but we were made to feel obligated and that it was what family did- and in retrospect I am so glad that I got to know my great grandma right up till the end.
Having said that, our gran was never violent, and though she did some barking stuff, we were never really scared. Plus, we come from an Irish family where open caskets and the like are the norm and we are quite blunt about death and mortality, so I think our parents judged us fit for the task on this basis.
I think, OP, as well as consider whether your daughter is fit for the task, you also need to consider what your dad is actually like. How is his illness manifesting itself in terms of his behaviour? Is it violent and frightening or just a bit odd? I think 'a bit odd' is not necessarily in itself something to protect a child from, unless it is particularly delicate. But as I said from the outset- you know your own child best. Other people have made some really good suggestions (e.g. an off-site visit, in the garden of the home, or perhaps another adult coming along and your DD just popping in for 5 quick minutes before going away again.) however, if you feel that even that is to much, then don't feel you have to do it, and you don't have to justify that to anybody. So tough for you

5more

I'm not minimising dementia and I do appreciate some people can get nasty, scary or aggressive - some of the posts here have illustrated this perfectly. I totally believe children should be protected from unpredictable and potentially dangerous people. It was a generalised comment about how the elderly are too often viewed, not this specific case. I have never seen a child in my mothers husband's nursing home either and I find that very sad. Astriana stated she never saw children either hence my posting. My post was part of an ongoing discussion. Not all of the comments posted here have been specially about dementia and neither was mine. And yes, I have pulled my dd away from dementia residents when I wasn't sure of their reactions. She is either in the quieter day room or in her grandpas room or in the garden and not within arms reach of someone, who could harm her.

Very wise words robinofsherwood.

Had I taken my children to see their grandmother in her last days their last memories of her would be of her dying. I didn't want them to have that memory.

It really needs to be gauged by the child, the older person and the setting.

I have found thankfully I did what I felt was right for my mum at the end of her life and have made my peace with that. i will never regret my choices because I made them from the best place for all.

ImNotOkayyy I really hope you can make your peace with the loss of your grandmother. Would you consider some bereavement counselling. I can't know for sure but I would imagine your grandmother would want you to make peace with her passing.

www.cruse.org.uk/

PovertyJetset What do you think the OP is projecting?

sorry I meant... It really needs to be gauged by the parent who knows the child, the older person and the setting.

Ah sorry Mummy

There are quite often children in the home I work in, but it is easier for children who are not related to, or didn't have a close bind prior to the onset of dementia with, any of the patients I think. Staff are encouraged to bring their children in when events are happening, and some of the staff children come in to visit residents who don't get other visitors, but not 6 year olds, it doesn't seem to be the right age. Babies and toddlers under close supervision are fine, and then older children of 8/9 plus - but only if they want to, some children take it in their stride and others you just know it isn't a good idea, and a volunteer group from a local school come in (11-13 year olds) but the school group only access the restaurant, where only the fairly competent residents eat, and are well supervised and tend to have a specific activity planned - Christmas carols or board games or once they brought rabbits in... They don't go to the living areas and who they interact with is preplanned.

It's easier if as far as the child is concerned that is just how that adult is - but if they have known the patient well as a loving, competent, self sufficient adult the change can be far more upsetting and unsettling. Not many children between 3and 7 or 8 visit relatives in the living areas.

I was taken to see my grandparents and great grandparents in hospital and nursing homes at least once a week when I was little. It was both a life lesson and valuable time I would never have had with them otherwise and I'm so grateful for that. I got a lot out of it and so did they. I've always been particularly good at talking to adults and elderly people because of this time with my own family and that's helped me as I've grown up (especially as I'm the favourite granddaughter in law to my GMIL for this very reason! ).

We've had something similar in the family. It got to the point where it was considered the wider family were projecting their hopes for a miracle moment of recognition by the patient concerned over that of the wellbeing of the children. Someone had to put their foot down and say no. This was made all the more easier when one child did go to visit, the patient concerned shouted aggressively 'Who are you?', accompanied with a lunge in the direction of the child.

Your child has expressed verbally that she doesn't like it. It scares her. As would it most fully grown people. It is very difficult to explain mental illness to young children - particularly if it's accompanied by screams and shouts and volatile behaviour. Unless you can manage it outside of the care home on a 'good day', with a carer present to 'offset' any difficulties - I'd be saying no - as hard as that is x

Trust your instincts Pigeon. You know best.

5more. Thanks. Reading back, I can see how in isolation my post could have had a very different meaning.