Dementia and Grandchildren

[WWYD2016]

Hiya, posting here for traffic, I didn't get any response within the Elderly Parents thread...I would really appreciate your opinions.
My mother who lives in a nursing home has recently had a Dementia diagnosis, it came as no surprise.
For at least the last year or more, when my mother was lucid, I had repeatedly threatened not to bring my children, her grandchildren to visit if she continued to burden them with her ails and perceived injustices.
I tried many times to explain they do not have the capacity to help her and their visits with her leave them feeling sad, angry and frustrated.
I her daughter should be the one she moans to, her grandchildren are for pleasure and fun.
I'd keep them away, she'd promise to behave, I'd bring them, she'd, as I call it perform; cry, complain, implore them to help her.
Role on to her deteriorated present, I'm still having the same conversations but now I realise it's a waste of time.
Over the last few months my visits with mom have been great, I go along with whatever she says whether it makes sense or not as it really makes for a happy jolly time, I felt confident yay, I'll bring the kids next visit.
As soon as she saw them I witnessed the transition, her body sagged, her mouth dropped and her eyes teared up, obviously her grandchildren immediately went to comfort her and she proceeded to tell them she was being raped daily by the female and male carers. I was horrified, my 10, 13 & 16 year old were visibly shocked into silence.
I took them away within 30 minutes and explained to them it wasn't true it's her mind blah, blah blah.
My 16 year old understand but I'm not convinced the younger 2 truly do.
It's been a month and I have not pressured them to visit her, though my 16 year old has once, independently.
Coincidentally she has never mentioned the rape again, not once.
I do not know whether I am doing the right thing or not. On one hand her issues are not theirs, she adores them and I am withholding them, on the other hand is it right they have a living grandmother but never see her, hey, I'll be an old lady one day myself, I don't want them to have the notion it'd be okay to put me in a home and never visit.
What do you think?

I think you need to protect the children. My dmil had dementia. We stopped taking our kids to the care home. Obvs. Will never know if it was the right thing but my reasoning was that mil would not have wanted them upset in her pre dementia days.

I think you are doing the right thing in keeping them away. That is horrific.

If they visited then yes they would get to spend more time with their grandmother but the fact is that that time with their grandmother is not a positive or even neutral experience.

This has been going on a long time and she clearly isn't going to stop. The talk of rape is so inappropriate as to be off the scale. Please do not feel guilty at keeping them away.

I agree with PP. I had a similar issue with my dad and chose not to take my children to see him as it was quite a scary and disturbing environment. I still visited, and I think in your case, your 16 year old is old enough to understand.
I don't feel guilty, I think of it as if it was me with dementia in a care home I would hate to be scaring my grandchildren like that. I would want them to remember me when I was well.
It's a horrible situation OP, sorry you have to go through it

I think your doing the right thing, but if they want to visit, let them, my Grandmother has dementia and has her good days and her bad days....if you do go I suggest taking some old photos of her and her grandchildren which will help jog her memory and they can talk about fun days they had with her. My Nan can’t remember my wedding which was only last month but can remember me as a 6 year old so we often talk about that

Just be led by what your children want to do - your protecting your children and I’m sure your mum wouldn’t want them to be upset or distressed

My Granddad has dementia and loves seeing DS, however I’d he started making unsettling remarks that upset my child or were madly inappropriate like the ones your DM made I wouldn’t take him anymore! You shouldn’t feel guilty, when your children are older you can explain why you didn’t take them to see her, your 16 already understands. Maybe if 16 year old wants to go alone let him/her as I’d say they’re old enough to deal with it and understand but I wouldn’t take the younger ones.

I think that they are old enough for you to have a frank conversation with them and explain about her illness. Get them to imagine what it would feel like to wake up in a, to her, strange place and then two people she thinks she has never met before dresses as nurses come in, take all her clothes off and then give her a full body wash and dress her. If that happened to you or to them you would be complaining about it. From her perspective that is what has happened. Often these situations can be rationalised but she will probably never accept your explanation, you might give it to help the dc 'oh yes mum, I hate bed baths too.'

My dc are all marginally younger than yours. Things we find have helped are:

bringing some sweets or biscuits with us so a positive start.

If well enough then going out for coffee as they find the home a bit depressing. There is usually a wheelchair we can borrow.

Bringing pictures or a book or some of their school work to have a focus for the visit.

I don't think that they need to visit every time you do but with clear discussion and strategies it can help. We usually spend the drive home discussing how she was and reminiscing about how she used to be.

I would not be taking a 10 and 13 year old somewhere where they are being told things like that. Being told about something as awful is rape is not for a young child to hear, they’re way too young to have to think about it. I wouldn’t bring them back. I’m not even sure I’d take the 16 year old initially, it would depend how he or she was coping.

I’d feel sorry for your mum but your first loyalty is to your kids and their wellbeing.

If you want to keep taking them to see her because it's good for them to know about caring for elderly relatives, maybe try putting it in a different scenario. Take her out for the day and go to a park for a picnic, or to the beach for fish and chips. If something else is happening to keep her brain interested, it's less likely that she'll get all weepy and thinking about rape etc.

If she can't go out, you could take her into the care home's garden and do the same thing. Keep the visit brief, about half an hour, and make sure you've got things to distract her like picnic food , and take a photo album with old family pictures for her to look at. I used to do that with my mother - the pictures would keep her happy for ages and she'd talk about the people she'd known in the past. I'd say " Who is this Mum ? " and she'd start rattling on about Vera and Jessie and Cecil , and the time would fly.

Good luck OP, you're doing a great job.

Your mother has dementia severe enough for her to be in a home - I’m sorry but no amount of explaining things to her is going to be understood and remembered. If her behaviour has become too extreme to be suitable for children you should feel no guilt about keeping them away. I take my children to visit elderly dementia relative - the other patients behaviour there frightens them so I literally take them occasionally for 5mins to see their relative so they feel they had a visit but they don’t stay for long lengths of times as it’s too upsetting for them.

Absolutely do not feel guilty. My Nan is now in a home due to her dementia and the relatives with power of attorney thinking this is the best place. I visit with my son (only 2) and even if he was to get upset or her behaviour decline, I would stop him going.
It is heartbreaking enough for me to see and she would hate being like this and us seeing it.

You are doing exactly the right thing for the children, do not feel guilty.

If you have a look on Dementia Friends (Alzheimer Society) webpage there are some good resources to look at and order that will explain dementia to your children. Your children may look like her siblings/cousins/you, someone she would have confided in or trusted completely when she was younger which is why she says these things to them (comments which she might totally believe at the time). Distracting early on can often work, take in photos or objects from her younger days to steer conversation in that direction. If she continues then it may be better to just take the older child/children, 10 is very young to understand those comments. It sounds like your 16yr old wants to visit and I think at that age can understand what’s going on so I would keep that up as long as possible. Perhaps for the other 2 children you can record a video message to play to her so she still sees them, she may be able to record a message back.

My children were much younger than yours but they didn't visit my husband's grandad in the care home with dementia - it would have been to upsetting for them.

I remember as a child being 10 and visiting my Nan for the last time in a care home and I was told it might be the last time I would see her but to try not to let her see me cry. It was so so sad! I still remember everything to this day, how small and frail she looked and didn't seem much like my Nan anymore and I was fighting back tears. I do have happy memories of her too from before that etc but I can so clearly remember that last time and whilst I'm glad I got to see her and say goodbye I'm not sure I really understood how much she'd deteriorated and how different she'd be if you see what I mean. I'd ask your children what they want to do and involve them x

Your DM has a failure of her brain, she can't help her behaviour but you may have coping strategies to manage visits. Do they DC actually want to see their DGM answer might depend on what sort of relationship they've had over the years.

Support for carers of loved ones with dementia or Alzheimer's isn't brilliant but a couple of resources are: dementiacarers.org.uk/ www.alzheimers.org.uk/ and on Facebook try Dementia Connection a closed group offering nonjudgmental support to those coping with this horrible disease.

I think, at those ages (except maybe 10 year old), you can explain the situation and let them decide the level of contact they are comfortable with.

Keep them away from her! She's ill, yes, but hearing this stuff from their own grandma could well be very damaging to your DC. There are all kinds of unpleasant side effects that dementia can have on a person and making (often baseless) claims of abuse and talking or behaving in an inappropriate/sexual manner are quite common. Keep talking to your DC and explain that it's the dementia talking and that you're happy that your DM is being cared for appropriately in the nursing home. Something about seeing her GC seems to trigger her behaviour, so I'd just remove the trigger. I doubt she'll remember whether they've visited or not, so you're not depriving her.

Huge sympathies WWYD2016. This is a really difficult situation. Have you or the home staff got any ideas about why your mother changes when she sees your children?

There are a lot of good resources for grandchildren but a lot of them are picture books for children much younger than yours. The Dementia Diaries www.jkp.com/uk/the-dementia-diaries-1.html
is for older children (and developed with a group of children and young people).

I think your approach of leaving it up to your children is a really good idea. I am so impressed at the 16 year old going on her own - that might work better as it is possible your mother finds 1 to 1 conversations easier to follow.

It’s really good that there is much more focus now on trying to focus on the positives that are still there when people have dementia (like the TV programme about the nursery and the care home) but it is hard when individual situations are more complex.

The Alzheimer’s Society does have an online community Dementia Talking Point. You might find someone there who has been in this situation too.

I would not feel guilty about keeping them away in these circumstances.

The way I look at it, dementia can be hereditary, so what you want for your mother, may well be your life in 30-40-50 years.

Maybe not the 10 year old, but certainly the 13 and 16 year old are old enough to understand about mental health, degenerative brain functions. You seem to think dementia arrived over night, it doesnt , it is an insideous degenerative disease that creeps over time.

This iswhere family and society breaks down. We out source and poke things we find distatesful, or cant cope with, into a home. We can then carry on with our sanitised little lives. Dementia is a grim reality.

There are 850,000 people with dementia in the UK, with numbers set to rise to over 1 million by 2025. This will soar to 2 million by 2051. 225,000 will develop dementia this year, that's one every three minutes. 1 in 6 people over the age of 80 have dementia
www.alzheimers.org.uk/about-us/news-and-media/facts-media

My mum had progressive vascular dementia. By the time of diagnosis (after deteriorating due to a uti and being hospitalised) she was aggressive, shouty and unable to sleep. She thought people were stealing from her, imprisoning her, hurting her and was very confused about why she was in hospital. Somedays she was much better than others. The signalling from her brain stopped working so she was unable to dress, wash and later (or when poorly) feed herself. She would forget she couldn’t walk and had a number of falls. She ended up in a side room with 1:1 care.

I used to take DS (5). When she was really struggling in the begining, DH would come too and they would have a short visit then wait for me in the cafe, as she improved, I would take DS and he would build jigsaws on the floor and share snacks with her. Sometimes he would ride on her knee in the wheelchair or climb on the bed for a cuddle. She was in hospital 3 months and went through various stages on health and cognition/comprehension during her stay. I used to explain to him by saying her memories and thoughts are like pieces of a jigsaw or pages of a book and they are all jumbled up as though someone had dropped them on the floor. Sometimes her mind would tell her she was at home or in another time and that was confusing and frightening for her and was caused by her illness. He seemed to get it.

She was later transferred to a care home and initially needed 1:1 there during waking hours (she was sleeping again by then) and once they sorted her meds she became much calmer. Not in the beginning though. I would take DS and if she started demanding to go home, shouting and banging I would have to leave. Sometimes she would become fixated on something. Like being convinced someones visitor was her brother in law and not understanding why he was ignoring her. We would take her to her room and distract. Other times she would ask and ask to go home, even when she no longer understood where home was. She gave the address of her childhood home to the dols assessor. I would leave it a couple of weeks and try again with DS. When she was not agitated, her face would light up to see him and he would take her pictures and would play with games and talk to other residents. I am sure they both got something out of it. Later he visited less when she couldn’t communicate anymore and didn’t really know who we were but he still came perhaps once a month. He was 7 when she died. He loved his grandma.

One thing I did learn and wish I had known sooner is that there is no point arguing or reasoning with someone when they have dementia. Even if they get it in the moment, they won’t remember. I would try to explain why mum was in hospital and that I couldn’t look after her because she needed someone with her all the time and I had to work and look after DS. She would take all this in and nod and 5 mins later would be saying ‘when can I go home, I can manage.’ She would not accept/remember her mobility problems. I would say but mum, you can’t walk! Amd she would say ‘don’t be silly’! Best to agree or distract. Mum would ask where dad was (or say she wanted her mum) and they had been dead years. When she asked about dad I would be vague as I would ‘t know what time we were in i.e. work or retires and if you said the wrong thing she would get cross. I would say ‘oh he will be back later’ or ‘he will be here in a bit’. It is incredibly hard but that part, the talking rubbish gets easier, we would make shopping lists as a distraction or look at photographs.

I would take your children but less often for a while and for shorter visits. Could they come in with their dad to say hello and then go off somewhere and collect you later. Her thought processes will likely change over time but if they persist speak to staff or her gp. It must be frightening for her to have those thoughts and fears and it maybe possible to adjust her meds to make her feel calmer. I think it is important to explain to your children what is wrong with grandma and why she says those things. I.e that she doesn’t understand that the people helping her to wash and dress are helping her which must be very frightening for her. That part of her brain that tells her her don’t say certain things to children isn’t working and it isn’t her fault. She sees new faces and hopes they can help. It is so sad.

I really feel for all of you, it is a horrible illness. If you can help get her on the right meds and practice distracting and not disagreeing where ever possible will all make things a tiny bit easier. I found loads of support on the alzheimers forum - talking point. 💐

The way I look at it, dementia can be hereditary, so what you want for your mother, may well be your life in 30-40-50 years.

Only a tiny number of people have the hereditary type of dementia, Iasktoomanyquestions. Billions of pounds have been spent investigating dementia and if it was simply a hereditary disease we would have known this years ago. It is a combination of many factors and not down to one.

The OP has been doing her best, visiting her mother, trying to maintain a grandparent/grandchildren relationship. The tone of your reply was not kind.

Guys, thank you all so very much for your responses, I have genuinely found them helpful Purplejay your analogy of a jigsaw is spot on , it's made me cry actually but it's an excellent way for me to explain it to my children. I love the photo's idea, I note she dislikes pictures of herself in happier healthy times but yes, there are others I could take.

I'm sorry but this made me really sad. Depriving a grandmother of seeing her grandchildren because she's suffering from a disease that means she doesn't have control over everything she says and does. Surely they're old enough to understand if you explain it to them, so why not cut back visits instead of stop altogether if it makes them or you uncomfortable. I worked with dementia patients and my grandmother had it so maybe I'm just sympathizing more with your DM because of that. I don't want to make you feel bad or guilty at all but I think essentially cutting her contact with her DGC is not a nice thing to do considering everything she's going through.

It does not sound like your Mum is happy when her grandchildren visit her. Perhaps it is better for everyone that they don’t visit.

Please don’t take your children to see her. I know it’s tough but it’s difficult to process for a 10-13 year old. I would have been around this age when I had to see my grandfather in a geriatric hospital and it has terrifying and I still remember it vividly now.

It does not sound like your Mum is happy when her grandchildren visit her. Perhaps it is better for everyone that they don’t visit.

Not necessarily the case and quite an unkind observation. In dementia, when the person’s emotions are aroused - for whatever reason, including extreme happiness - it can result in odd or unsettling outbursts. It may be that OP’s mum, particularly if she was a loving grandma previously, is struggling to process her emotions at her grandchildren’s presence and behaving in this way draws them closer to her. My mum is often overwhelmed by her emotions, particularly around close family - she’ll weep silently, or lash out verbally. None of it’s intentional, none of it’s meant, and she simply can’t help the way her brain is being gradually eroded.

But whist their visits are not necessarily as distressing for her mum as they may appear, they’re obviously upsetting for the children, who do need to be protected in what can be a scary situation for them. As PPs have mentioned, there’s good info about communication and family inclusion on the Dementia Society website.

Interesting, btw, that your 16 yr old’s solo visit didn’t elicit the same dramatic outburst, OP - maybe smaller numbers, just you and one of the children, might improve things on future visits?

Wishing you luck and sending virtual support and a hug - it’s a devastatingly sad and difficult path to travel with a loved one, and unfortunately one that many more of us are going to have to face in the future