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to be becoming worried about exposing DD to mum with severe dementia (more a WWYD)

(27 Posts)
sandwichgeneration Mon 26-Aug-13 14:53:42

Apologies this is long but don't want to drip-feed and there's a lot of context which needs to be here. Am a regular but have name changed as might be recognisable.

My mum has what is now fairly severe dementia, still lives at home with my dad although we're thinking about residential care. She still just about recognises family members but has difficulty working out what their relationship is to one another, needs help going to the loo, repeats questions multiple times a minute and has difficulty with motor functions so needs help eating etc. Although at heart she's still a lovely, kind person, she's pretty stressful to be around most of the time.

My dad is her primary carer, he has carers in the week but no support at weekends. As a result myself and my sister try our best to go down as often as we can but its not that easy (I live about a three hour train ride away and the fare isn't cheap). In general, one of both of us plus family members is generally there every other weekend.

I always take my DD, who is 2.5 and sometimes my DH there. Up until fairly recently I haven't worried about my DD being exposed to this because my DD's language skills weren't really up to understanding that there is something "different" about the way my mum interacts, IYSWIM. Now DD speaks pretty fluently and I think is starting to pick up on the fact that my DM asks the same question a lot etc. Which is fine in itself.

My thoughts on it up to now have been that I want my DD to have a relationship with her grandmother, regardless of her condition and vice versa, and have tried to explain that "granny sometimes feels a bit sick/tired" if my mum is behaving oddly.

But recently my mum's cognitive ability has declined significantly and there was an incident recently which scared me a bit and is making me rethink this. DD (who had just been given her first scooter) was wearing a little helmet which she has to wear with the scooter, in the house with my parents and my mum became convinced the helmet was something which had come loose from a piece of furniture, couldn't grasp that there was a person's head inside it and started "hammering" it onto DD's head, with her fist, quite forcefully.

My dad and my DH got her to stop quickly so no physical harm was done, but DD was obviously confused and distressed that her granny was apparently attacking her and it was difficult to explain this afterwards. My mum also gets extremely distressed if my dad leaves the room for more than about five minutes and starts shouting and the last time my DD saw this she asked me why granny was shouting so much.

I don't want to feel that my mum needs to be "hidden away" and I really want to keep the contact as long as its feasible because I'm sure my mum gets something out of seeing my DD, even if she's confused as to who she is. But I am becoming increasingly worried that a child that young isn't up to witnessing the more advanced stages of dementia and that I should have a strategy in place to cope with situations like this.

Is there anyone else who's had to deal with this and any advice on this?

Beastofburden Mon 26-Aug-13 14:58:25

I hate to say it but your mum might get just as much out of seeing photos of your DD. I am not sure that the situation is stable enough for your DD to see much of her at the moment. Perhaps if her medication moves on and she becomes more calm, if less alert?

I'd leave DD at home for the time being,sorry, I can see that is very hard, but dementia is a terrible disease.

magimedi Mon 26-Aug-13 15:00:59

I can't help you I am afraid. My mother had dementia but was not aggressive.

However, you could re post this in Elderly Parents section of the forum. There are a lot of people there with a great deal of experience (sadly) who may well be able to offer advice.

www.mumsnet.com/Talk/elderly_parents

So very sorry for you - it's a dreadful illness.

sandwichgeneration Mon 26-Aug-13 15:01:21

beastofburden I think you're probably right. The big problem I have (should perhaps have put this in the OP) is my dad who I think would be really upset if I stopped bringing her. He is in denial about how bad she is.

sandwichgeneration Mon 26-Aug-13 15:04:11

magi yes probably good idea. Was mainly posting here for the traffic tbh. Any idea how to get a thread moved?

Viviennemary Mon 26-Aug-13 15:07:11

I was going to say maintain the relationship and just say granny is a bit forgetful. But really this banging on her head would have really upset me. And your DD was bound to have been upset and confused. I think in your shoes I would leave DD at home for the time being. And it's not at all uncommon that your Dad is totally in denial about how bad she is. I know somebody else in this exact same position about being in denial.

Sirzy Mon 26-Aug-13 15:07:50

I would carry on as you are with constant supervision. My dad worked with people with dementia and from a young age we visited him at work and by doing so such things just became normal to us so not something to be scared of IYSWIM.

Your daughter is so young that unfortunately she won't remember Grandma any other way. The nature of dementia means that your mum could live for many years though so to your daughter that will always be grandma. Answer questions as they arise and reassure her but I wouldn't stop contact between them.

Andro Mon 26-Aug-13 15:10:00

Report you opening post OP and request for it to be moved.

twinkletoedelephant Mon 26-Aug-13 15:17:18

My mum took me and twin sister to visit grandad ( her dad) in his care home from when we were about 5 for about a year .... She always use to go and check he was dressed before we were allowed in to see him and he would happily walk me and sis one in each hand around the home I remember being introduced as one of his girls usually one of my aunties names but it was all pretty harmless and we would get a bag of sweeties on the way home... My grandad had over 30+ grandchildren me and sis were the only ones he saw as other family members thought it was better the children didn't see him Llike he
was. Mum just told us his brain was old and didn't work as well as it should ( easy concept for us as db had servere LD as well)

twinkletoedelephant Mon 26-Aug-13 15:19:24

What I am saying is if she is safe and cab understand granny is different then let her go ... Sadly there will be a time when it's just not suitable ( my mum stoped taking is when all grandad said we're swear words) and he was always very angry the opersite to his pre dementia personality

redwellybluewelly Mon 26-Aug-13 16:15:45

I have a three year old DD and she was 2 the last time I allowed her to see her great grandma. My grandma was becoming increasingly difficult to visit because she was becoming confused (possible onset of dementia) and her hygiene standards were becoming very poor.

I took the line that I would visit until there was a risk to my childs health, DD has medical issues and also chews everything so eventually I said that we would meet outside of her home. I should add this was despite four times a day care, a cleaner and several relatives doing their best.

My grandma died in April this year, she didn't see our DD since the October ish previously. I truly felt bad but sent regular photographs and cards - my daughter doesn't remember her - but as her mum I evaluated the risk and decided what I was comfortable with. I copped a lot of flack from other family members.

marriedinwhiteisback Mon 26-Aug-13 16:36:28

My gran had severe dementia and was already in residential care when ds was born. I took him a few times but by then grannie didn't even recognise mother or grandad. I took the view that a geriatric mental health unit was not the place for an infant; this upset my mother greatly. Both my children continued to see grandad as regularly as possible. DD was 9 months when grannie died and just turned two when grandad died. I heard my grandad sob once - when I told him dd's name the day she was born; grannie's - of course.

In year shoes, at this stage OP I think I'd just cut down on the visits a bit; sy every other time, keep her really supervised when she's there and tell year dad she has a bit of a cold and you don't want year mum to catch it. For as long as year mum recognises people and is at home keep visiting with her - esp if it's something your dad looks forward to - he's doing really hard yards and needs pleasing.

Xx

Labro Mon 26-Aug-13 16:58:26

I work with adults with dementia. My advice is if you are visiting then take dd with you. If you are visiting in order to provide care or respite then do take dd still but allow her to predominantly spend time with grandad and supervise her interactions with granny for short periods that they can both cope with better. My ds has come with me since around your dd's age and accepts that their brains function differently but still know loads of different things and it doesn't phase him. It may also be time for your dad to get some proper respite care set up so that hes got a chance to go visiting family without a permanent move to residential care for your mum.

NoComet Mon 26-Aug-13 17:30:42

If think if you don't take her, it isn't fair on her Grandad. It's bad enough seeing his wife so ill without it ruining his relationship with DD.

I think you have to think of this grandad an her can do out of the house or at least in a different room so she only see's grandma for part of the visit and is always supervised, but for your DDad seeing his GD is probably the best resbite there is.

sandwichgeneration Mon 26-Aug-13 17:34:59

Labro the problem with this approach is that my dad is a bit rubbish with this. Partly because he is slightly disabled (has problems with his knees) but mainly because he's not really able to grasp that a small child needs to be watched constantly. So for example he will just sit and read and leave her running around without really taking on board the risk that she could be sticking her fingers into something etc.

ChippingInNeedsSleepAndCoffee Mon 26-Aug-13 17:46:14

We have been through this with one of my close friends - both her parents had quite terrible dementia for a few years at the end of their lives.

We didn't stop taking them, but we did watch them every minute we were there.

Both the children sort of understood that Grandad & Grandma did odd things because their brains got a bit confused. They did some loud/scary things, but the children were OK with it because there was always another adult there.

They were 3 & 5 when their Grandad died and 5 & 7 when their Gran died - they both still have very fond memories off them, despite the 'strange' behaviour. Don't forget, most of it isn't as 'strange' to kids as it is to adults as they don't really filter their own behaviour!

If there are specific jobs you need to do, then I'd leave DD with someone else, if you are just visiting and doing a couple of small things I'd take her.

I'm sorry you are going through this, it's very hard. (I have been through it with a couple of family members and quite involved with friends parents with it too.)

CMOTDibbler Mon 26-Aug-13 17:47:11

My mum has fairly severe dementia, which has been apparent as changes in her since ds was 18 months old. He's now 7.
He knows that grandmas brain doesn't work very well, and that she doesn't understand us very well, and doesn't say things nicely.
But in the last 3 years, ds is never unsupervised with her, not even for a minute, and we avoid anything confusing for her - no helmets, masks, dressing up clothes. She doesn't really know him now, and can't name him or my dh.
I don't think she gets anything out of seeing ds to be honest, but dad likes to see him (but not for too long), and ds is very good with her. Its sweet to see him helping her choose food from a menu (grandma, I'm having pizza - its like bread with cheese and tomato- are you going to have that too) and trying patiently to get her to do a jigsaw with him. On occasion she'll be nasty to him, but he shrugs it off as grandmas poorly brain.

sandwichgeneration Mon 26-Aug-13 17:53:00

Chipping yes this is the conclusion I'm coming to. As I've mentioned above, the main problem I have is that my dad doesn't really grasp how impossible it is to look after both a toddler and an adult with advanced dementia at the same time. Until fairly recently he was regularly asking me to come and look after my mum while he went away for periods of up to 10 days with DD in tow.

I did this 18 months ago (when my mum's dementia was more managable but still pretty bad) and it was the worst week of my life and have put my foot down about doing this since but its got to the stage where I basically am afraid to be left for more than about half an hour with DD and mum, she will get very distressed if my dad is out of sight for more than a very short period of time.

The last time I was down I went for a very short walk (out in the communal garden of the place where they live) with dd and my mum and within five minutes it was unworkable because my mum would be making demands/asking questions which were totally incompatible with safeguarding my little girl. But he doesn't really get this.

I am loathe to try to impose any more restrictions than he currently has -- his life is already a bit of a nightmare, the only respite he gets are when the carers or myself or my sister are there and he understandably bristles at the idea that his children are controlling him. But its becoming quite unworkable now.

I think I'm going to have to lay down some very clear ground rules about this (i.e. he can't go out for more than about an hour leaving me, dd and mum alone unless someone else, my DH or a carer or another family member is there).

ChippingInNeedsSleepAndCoffee Mon 26-Aug-13 19:14:45

I guess he doesn't 'get' how impossible it is because he would just let DD free range! <sigh> It's no wonder you are worried tbh.

It is not at all reasonable to be left with your Mum and your DD on your own, not really even for short periods. Your Mum's dementia is too advanced and your DD is too young to obey basic instructions that would help and/or keep her safe (easy things like - stand there and do not move until I get back or sit on that chair and stay there while I see to Grandma, so that you can physically separate them if necessary). She probably has another year before you can ask that of her and expect her to do it reliably (they seem to 'get it' quite young when they are aware of additional needs of someone around them).

Is there a local nursing home that cater for people with dementia? If there is, I would seriously consider it as your Mum probably wont care (generalising I know, but it does seem to be true) and your Dad would have some quality of life. sad It's hard to do, but sometimes the only option - especially if she does things that could risk both of their lives (my ex's Nan had to go into care when she couldn't be left for 2 minutes, literally. She would instantly do things like put the electric kettle on the hob, leave the house, put clothes in the oven and turn it on... and there is a limit to how 'safe' you can make a house and yet still live in it) especially when there is another elderly person living in the house who tends to forget the safety changes or where you have now hidden the key etc.

Can you help him to apply for more respite? Longer carer visits?

marriedinwhiteisback Mon 26-Aug-13 23:41:35

Your dad needs some respite. Is this possible. So hard for all of you. Xx

Cloudkitten Mon 26-Aug-13 23:59:29

If it was me, I would reduce the number of visits that DD accompanies you on, so you have some visits where it's just you (leaving DD at home with DH) and then you can provide proper respite care for your dad without worrying about DD. Then do some visits where you can take DD (and DH to watch her) and then you can still provide respite for your dad, and your dad still gets to see DD, but DD is safe because your DH is there for watching and safety and your dad (who you say isn't quite as capable of checking for safety) can just enjoy being a grandad without having to be responsible for DD's safety.

Please don't feel guilty about putting your DD first. Some people won't share my opinions, but in my mind you have a primary responsibility to the health and welfare of your daughter first. If I was a grandparent either with dementia or caring for someone with dementia I would understand that it's not quite the right environment for a very young child. You are not being selfish in considering your daughter's needs, they are just as important as your mum and dad's needs.

Really, though, your dad needs gently easing into facing facts that your mum is getting very poorly now and requires more of the specialist care. Is there any way that you could take your dad out for lunch and have a chat, during the week when your mum has carers in, or during the weekend when one of your siblings can be left on duty with your mum? Your dad possibly needs to consider matters from a physical distance. Also he probably well knows she needs more care but feels very guilty in handing her over to carers for even more hours. However he can only help her if he is well and healthy himself, so it won't do any good if he gets bogged down in the stress of it all. Sometimes people need to hear clearly from someone else that they are not being selfish in considering all the needs involved which includes their own.

Cloudkitten Tue 27-Aug-13 00:13:01

PS I also wanted to say, (very gently and respectfully) that having had a relative with dementia, I know it can completely change who they are) so your DD can't, in real terms, get to know/develop a relationship with your mum in a true sense. It's definitely good for children to have some understanding of people being "different", and to witness family members still being loved, cared for and valued no matter what the illness.... but they don't have to see it "warts and all" as some sort of life lesson, not at your DD's young age. Maybe if your DD was a teenager, then fine (with careful handling) but your DD is just too young to process the illness with any real meaning and at some point it could be frightening. IYSWIM. Hence having DH there to help "smooth the way" and help cover up/distract any awkward moments so your DD really does get the best of your mum, as I'm sure there are still some lovely moments. I hope this isn't too delicate to touch upon (I am very respectful that this is your Mum).

sandwichgeneration Tue 27-Aug-13 10:39:57

cloud I have tried this with my dad (we met for lunch last week with my dsis) and we talked about a long list of things including stepping up care at home and my mum going into residential care.

The problem is that for as long as she is at home my dad basically wants to "keep up appearances". For example my mum struggles to get upstairs to bed even with the stair lift and my sister and I have talked to him about reorganising the house so they can sleep downstairs in what is now the living room but he refuses because he has had some expensive bookshelves put in. Etc. When I or my sister raise issues like this he accuses us of "controlling" or "infantilising" him.

Cloudkitten Tue 27-Aug-13 12:59:15

That's hard, Sandwich. My dad would be like this. Apparently easygoing on the surface but will not be moved, he's very stubborn and he really wants us to mind our own business, even if (as here) something really needs doing for the good of him and your mum.

The only way I can usually get him to listen about something is to appeal to his emotional side. If it was my dad... I don't know, but if I had exhausted all practical reasons, (I can easily fall into lecturing mode as a first port of call, when it's so blooming obvious what needs to be done) then I would have to appeal to his love for Mum, and say that I was sorry if he felt I was controlling or babying him, but what we all have to remember was that Mum's comfort is the priority, and would it be more comfortable for her upstairs or downstairs. That he's been, and continues to be, a wonderful husband, and dad, but he needs to stretch his comfort levels a little bit further, for her sake. That if he thinks back to past times, holidays, special occasions etc, he can see how much things have changed and it's very painful to witness but your mum is so vulnerable that it's important to ensure her comfort levels are kept as high as possible. That you have no intention of controlling him, and you don't mean to try to undermine him at all, it's HIS house and HIS wife, and of course he has final say, as is his right, but it's very difficult for you and sister to witness what a struggle goes on when there are some practical things to try that might ease at least the physical struggles.

Obviously I don't know if any of that might be useful but some people do respond to that sort of thing (I do). I remember once there was a time I was not getting on with my mum at all, for months and months, we just annoyed each other. And I was saying something about it to Dad one day and he was "um-humming" along. And in the end he just said "Your mum loves you, you know. She would do anything for you". That was all, literally. In almost an instant I suddenly saw things differently. It just appealed to my heart.

sandwichgeneration Tue 27-Aug-13 14:54:15

cloud yes that works up to a point but unfortunately he needs to see problems unfolding before he will accept they are a problem.

What usually happens is that myself or my DSIS will raise something, he will knock it back, then something will happen which essentially bears out what we have suggested and he sheepishly sayd he thinks we have a point.

For example until quite recently he was taking her out socially to drinks parties and things. I was saying repeatedly that I didn't think she was up to it and he should leave her at home with a carer/family member if he wanted to go out in the evening. He brushed this off until there was an incident where they went to something and she became quite distressed when he was across the room talking to someone and she couldn't find him.

He's not so selfish that he doesn't recognise when she's genuinely distressed but he's very self-centred and not good at anticipating these sorts of situations before they happen.

I think I will talk to him about making sure he doesn't go out for too long when I am there alone with DD though. Its fine if my DH or DSis are there but on my own its too much to deal with. I think he will eventually accept this.

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