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?

It might have been far more traumatic, user, if she just disappeared from your life and it wasn't explained properly.

Magicpaintbrush totally agree.

This - "Tread very carefully before you decide whether to take your dd to see her grandad - it's all very well other people saying 'she will be fine' but they aren't the ones who will have to deal with it if it really affects your dd badly. We have learned this the hard way."

My dd at 6 barely acknowledged her wheelchair bound unable to move, just grunt, peg fed grandpa. He communicates through blinking and pointing very slowly to letters on a card, which is hit and miss. At 8, she accepts and loves him. Kisses him. She doesn't remember him from before when he used to play with her.

6 is therefore probably a very difficult age. Personally i would visit and get your dh or someone to bring him to the room so she only has contact with him. Make visits short. You will need to talk lots about his illness and how he's different and sometimes a bit frightening and that's ok. You're here to protect and look after her. Take some distractions for her and plan a nice activity afterwards to make the whole experience more positive. If you choose the same thing, she may start to associate it all better.

My dd stays at the home for a couple of hours as we live far away. Now that she's a bit older, she shows off her gymnastic skills and cartwheels in the lounge. At 7, she befriended a staff member (who did crafting etc with the residents) and went round with her for half an hour or and got involved in activities. It's really all about making the experience as positive as possible. In the summer you'll be able to go in the garden.

See how you get on. I would try to persevere if you can. However I wouldn't let my family pressure her/me or make her kiss or talk to him if she doesn't want to.

Personally I think getting a child to see ill people and geriatrics as human beings and not scary creatures is an important life lesson in caring for the elderly and in human mortality. And this takes time and a gentle approach. Sadly in our society so many elderly people are disenfranchised by people, who fail to see it will be their turn one day.

Personally I think getting a child to see ill people and geriatrics as human beings and not scary creatures is an important life lesson in caring for the elderly and in human mortality. And this takes time and a gentle approach. Sadly in our society so many elderly people are disenfranchised by people, who fail to see it will be their turn one day

Absolutely. Great post.

Please take her. Wait till a good day. Explain hes not well. It would be good for both your dd and your dad in different way. Its a hortible diease.

It's a tough call, Permanently.

My DF had dementia, but my DS is older. However, my Dnephew visited him very frequently. They would occasionally play a simple game together. DF was diagnosed with dementia the year Dnephew was born, so those are the only memories that Dnephew has.

Mummy if i had a like button id press it. Perfect. The carton arthur deals with this ...grandpa dave memory book. m.youtube.com/watch?v=lE1uetF6xxA

I work in a care home. I wouldn't take a child into one.

DS came with me to work once, for about an hour and stayed in the staff areas.

People with dementia are very unpredictable. Especially if you don't know them.

Personally, I'd give it a miss.

Pitchforktotheface you asked "Will you regret not taking her, if he dies?" My mther died last year after a month in the hospital barely speaking or even moving. My dd and ds never saw her like this. I in no way regret sheltering them from seeing her like that. It could have had no good impact on them or her.

Whatever the OP decides to do she needs to be comfortable and not regret whatever happens, IMHO.

I am sorry for your memory. "I remember being taken to see my great gran, I was about 3. It isn't a nice memory. I remember being scared, I remember the smell of the home and the stair lift. I don't actually remember my gran."

To me this is further evidence that visiting very sick relatives is not actually very good for kids.

Trooperslane "My DM had Lewey Body Dementia and was incredibly, indescribably un predictable." That's the dementia my mum had too.

Buddah "... in another way my other nan when she was seriously ill and eventually passed away, I was kept away from everything and I still resent my mum for that to this day for not being allowed to see her 1 more time. Children can cope with a lot more than we give them credit for, they ask a lot of questions but that's their thought processes trying to understand it all."

Please try and forgive your mum, I expect she did what she felt was right and was coping with her own parents death.

I do not think it is old fashioned to want to protect children from seeing loved ones in difficult or maybe embarrassing situations. I would expect the OP has already explained about illness to her dd but her dd doesn't understand fully and of course she cannot completely at 6.00.

Attending a funeral as an adult or visiting a relative as an adult is not the same as doing that as a child.

Mos parents know what is best for their own kids, and decide in the way they feel is best. It is not the place of wider family or relatives to dictate what the OP should do. It won't cure her father.And were he well, he may not wish her to be exposed to dementia in this way. Dementia may also affect people differently. My mum could not really smile. We thought it was the dementia. Ironically, it was the dementia medication and when she was dying and off the medication she could smile. But I would not have exposed my dd or ds to my dear mum at the end of her life.

If my kids resent me for that (I feel sure they will not) so be it. I, as the adult, made the decisions.

Mummyoflittledragon you make some interesting points and it is clear you are very compassionate.

I know it will be my turn one day, no illusions about that. And as far as i can recall I barely went into a care home until I was an adult.

But the bottom line is parents have a responsibility to care for their kids. And presumably know what they can tolerate/cope with. If it works well for you that is brilliant. But the Op is not sure and is being pressured by family who think this will have some sort of affect on the relative. I did take dd and ds in to see my mum, but in the end it was too difficult and stressful. the kids just wanted to watch TV etc and my mum found it easier i think when it was just me and sis.

I do think there is a difference when kids are scared, as opposed to just bored etc. Sadly, not all kids are compassionate despite the best examples we may set them.

My grandad died when I was 11 and he was someone I loved spending time with. But when he got very sick I didn't see him again. I did go to the funeral. I don't regret not seeing the change in him as he got sick. I don't feel i missed out. It was hard enough on the adults in my family. Seeing people you love getting ill is very distressing and unfortunately he won't even remember the visit. So who is going to benefit?

Having been though this, I wouldn't take her.

It's the unpredictable behaviour of your dad and other residents. Your dd wellbeing is the most important.

Yanbu, don't underestimate how dd will come to remember grandad if she continues to be scared of him. My gran died when I was that age and whilst I have other fond memories the clearest one is of her in bed ill.

londonrach Italian. Thank you. I'm crying now. This is my mother's husband. My father died when I was in my teens. I'm crying because of your recognition when my mother (narcissistic tendencies and has treated me apallingly) has accused me of not caring for him at all an much worse. She has no concept of how much I have influenced my dd to be accepting of him.

I do agree that not all children have learnt the compassion needed, because they're only little and yes, there is a big difference between not caring and being scared. My dd was scared of her grandpa at 6 so I do understand that there is a very high need to protect your child. He was still living at home then and able to eat - just - not much else was different. He went into the home when she was 7. So I do understand she was older and she grew closer to him once he went into the home. I appreciate she is a pretty emotionally mature child for her age so not all children are able to understand what she can at 8.

And I meant to add, I totally agree op must do what is best for her child.

I think the people just urging you to take her no matter what are forgetting that not all people with dementia are the same (by a million miles) and not all 6 year olds are the same.

You could talk to her a bit more about dementia, and probably should, but a visit from her probably will not benefit your dad and you will be doing it to appease extended family, not actually for your dad. Appeasing extended family is not worth causing your DD genuine upset, disturbed sleep, anxiety etc. Of course whether a visit would cause those things depends on your individual child and the actual environment your dad is in.

My kids cope fine with people with advanced dementia whom I work with - in fact my nearly 12 year old could probably cope helping out there, I'm quite impressed with her as she can be quite a drama queen in other ways and my nearly 6 year old is quiet but understands the residents have poorly brains and need looking after, and don't understand what they are doing or saying.

However same child is very upset indeed visiting his beloved grandma in a very calm hospital setting where she is dying of cancer because she is his grandma, who until 3 months ago was vibrant and active and took him on hikes and carried him about and was happy to get up at 5am to make him 900 slices of toast - coping with a decline in someone you know well and love and have always regarded as strong and capable is a massive challenge even for adults.

Many people with dementia who are visited daily spend most of their time convinced they have been abandoned and nobody ever visits - as you have said, your dad thinks you never visit even though you do. It's likely that the day, or hour, after your dds visit he will be telling everyone she never visits.

It's a very sad situation OP but I disagree that you necessarily have to take your DD to visit, though if you can explain what's happening to her in a way she can process then a visit actually could potentially help her accept that her grandad isn't going to snap out of it and stop "acting weird", if that is what she is waiting for, and that it is an illness and nobody's fault etc.

I don't think it's a good idea to take a young child to a care home for people with dementia. It's a sad situation but your DD's welfare has to come first.

YANBU.

You know your child so you make best interest decisions for her. I would also be cautious to listen to the words of any adults who prioritise the needs of your father over your child... Children should not be used as a tool to improve an adults state of mental health!

I would explain the situation to your daughter (age appropriately) and ask her if she would like to go. If she decides not to, respect her decision, if she would like to then you always have the option to leave if it gets too much.

5more..sadly i know not everyone is the same with dementia as i work in various care homes. Italiangrey said it perfectly as im not good with words. Its why i suggested the cartoon which is basic but starts the preparation in a non scary way. Op should if she thinks her dd can cope take her dd in but she needs to prepare her before. Explain its the disease making grandad act strange. Op whatever you do in this situation is neither right or wrong. X

I don't have experience of dementia so take what I say in the context that it's meant.

When dds grandfather was dying in hospital we took her. She was nearly four and wanted to see him. He was very weak and a shadow of his former self. It cheered him up no end to see her and she was pleased to see him. She also has a frame of reference that he was very poorly and then he died. She can remember "how" poorly people are before they die. However years later she still talks about some of the things she saw with much confusion and angst. I still think it was probably the right thing but it did leave a big impression on her and I can only imagine the impression left on your daughter would be even bigger.

When I was a little girl we visited some family and one of the members had severe mental illness. This didn't bother me until one day he hit me. He was much older than me and I passed out. I was terrified thereafter. I was clear that I didn't want to go back and when we visited we would stay in the car and some of the family would pop out and see us. I was however listened to. Even as an adult I would probably still be wary. Your daughter may not have been through anything to make her scared but she is scared nonetheless. I was so relieved that people listened to me and if my child needed me to listen then I would, but I'm not sure if maybe your daughters fear is just fear of the unknown. For that reason in your shoes I think I would try to get a private room with an extra adult to take her out if needed. I also wouldn't put the emphasis on the visit. I would make the visit to an ice cream shop with you and dh and that you're just dropping in for 10 minutes to see your dad. Then someone takes her out after 10 minutes, or sooner if she asks.

Ultimately you know her best and that is the most important deciding factor.

It is better for children to have exposure to real life - the unavoidable parts. It's also good for them not to be the most important person in the room once in a while.

I don't think I would be dealing as well with care responsibilities I have now, in my 50s, if I hadn't been taken to see very elderly and demented people as a child. Your family are right, I think.

Really tough situation OP. Like a PP, i also work with dementia patients (although probably not as often as PP sorry forgot user) and they are extremely unpredictable. Looking at it from the clinical/health care professional aspect, I've seen people with dementia benefit greatly by relatives visiting, as well as their young children. However I've also seen people scream and shout at relatives and children because they don't know who they are.
Distraction is really good for people with dementia when their aggressive or upset, but it really depends what your grandad is like. In some people distraction does not work at all, I've had a patient hit me because they forgot I was the nurse, which 10 seconds prior to that that were saying what a lovely nurse I am.
As some PP have said, I think it's a good idea if you do want her to see him, for them to meet briefly in a quiet area away from other people, and she can leave easily with another person if things do turn bad.
I don't think you should feel guilty if you don't take her though. It's such a difficult situation.
Good luck and I hope it all works out okay, whatever you decide to do 😊

Sorry mummy not italian although both said it well.

Could you go with dd and DH and leave them in the car to start with. Pop in and ask if there is somewhere quiet to take grandad and access how he is on that day. If he's fairly lucid then go out and it's not overly hectic go and get them both. Maybe she can bring a photo of herself for him with her and prime her with some good stories she can tell him about school etc. Make it short and sweet and get DH to remove her while everything is still ok. They could go outside for a walk while you finish your visit.

My mum has dementia and cannot always remember when I've spoken to her even in the same day but funnily enough can always remember seeing her grandkids. It makes a real difference to her demeanour in a week and really lifts her. If your relative has been asking there is some suggestion that they do have some recall in this area. Mum's dementia group can never remember who I am but always ask after the kids if we don't take them.

I think there have been some really positive suggestions to try and make a visit more manageable.
Personally I would try to take her, yes its not an easy situation but a bit of effort & planning may pay some real dividends.

We are in a difficult situation as I really had a poor relationship with my mother but when she got ill I decided that I needed to put that to one side. This was because I would like my kids to learn to treat people as they would like to be treated. I don't want them to abandon me when the going gets tough and the best way to do this is to lead by example. We talk about granny's illness (in simple terms) and we manage visits - keep them short & think of specific things to do/take to show her & then finish them with going off to do something nice (go see granny then go for cake or swimming etc) so that the memories that they build always have something nice attached to them.