Interaction with young children

[Macca]

Hi everyone,

My mum was diagnosed earlier this year with early onset. With the benefit of hindsight, she probably has been showing signs of the illness for at least 2 years, maybe longer.

One of the ways that the illness is currently affecting her is in her willingness to interact and the pleasure got from interacting with her grandchildren (I have two children under the age of five). As you can imagine, given their age, they are boisterous, noisy, excitable and all the things that young ones are. They are not badly behaved, just normal kids. We live not far away, and see my parents quite often (my dad does a school/nursery pick up and drop off a couple of times a week).

I (and my dad) are finding her reaction to the kids pretty hard to deal with. At best she tolerates them, at worst she bristles with irritation at them interrupting her day, and huffs and puffs around them. This is an awful thing to write, but she even seems to resent the attention they get. This is so at odds with the way she was before the illness took hold, and I cry a good few tears for my kids not knowing my mum as she was. I've had a look at the factsheet about explaining alzheimers to children, but it seems to be geared towards kids that are older and understand. I want to know if anyone is having similar challenges. How do you explain to little children? On occasion the older child has said "nanny doesn't like me" and I've tried to explain that she loves them both, but if they can't see it, it's pretty hard to comprehend.

As it seems so irritating for her to have them around, should we be limiting the time mum spends with them?? Are we making life worse for her by bringing kids into her environment?? If we made more effort to see her more often would that make it better??

My dad says it's the kids that keep him going and keep him sane!! He needs his grandchildren time.

I suppose the obvious answer is to give dad time with the kids and take mum out whilst they are there. But I'm conscious that in the short term their perception of mum and her tolerance of them won't get any better if this is all that we do.

Is it likely that this is a phase that she will come out of? Can her view of them improve?? I can't talk to mum about it as she denies that there is anything wrong with her.

My mum before illness was kind, caring, loving, giving, funny, fun, sensitive, soft, fluffy - a lovely person to be around. We catch glimpses of old mum every once in a while and grab hold of them with both hands when we find them.

Sorry - so many questions but hope this strikes a chord with someone.

Thanks for reading.

 

[Brucie]

Hello Macca

oh yes, it is an awful problem, and it is not confined to children.... it can be any distracting thing at all that affects them.

First thing perhaps is to try is to cut down the time they are with her. Maybe short times, but more often.

You have to turn everything around to see her world as it is now.

She knows she has forgotten all sorts of stuff and feels very vulnerable and fearful of what happens next.

She wonders if anyone has noticed.

She applies all her energies to trying to be normal. That cuts out niceties. Just living takes her enormous effort.

She may appreciate what lies ahead.

She doesn't want to be like this to the kids - remember that!

She may feel she wants to shut herself away somewhere to get peace - or she may fear someone will shut her away. She can't win, you see.

She will see the kids getting attention and will of course resent that - don't forget there is an element of crossover here. As the kids grow and learn, so she is in effect growing younger and un-learning. So she will take on some child-like aspects - jealousy for instance.

Will she grow out of it? Yes, but that doesn't mean she will be better. She may simply ignore them and you at some stage. There is no predicting how things will develop.

Just take it day by day. Try different things out. If something works then do it again.

Finally... she is still in there. She is just having to concentrate all her faculties in .... living.

 

[HeatherR]

Hello Macca
I have been diagnosed with Early Onset Alzheimer's at 51, but as I am still at the very early stages I can give you some insight into what I perceive is happening to me. I know that each one of us that is struck by this dreadful disease suffers in a different way, but perhaps it will give you insight into how it may be affecting your Mum.

I used to lead a very busy lifeas a computer consultant and lecturer, but had to give up the job about 4 years ago. Now I struggle to get my brain to work enough to understand the world around me. My brain simply refuses to work things out and as such I am beginning to withdraw away from all that I can no longer comprehend.

The noise and busyness of young children almost frightens me, they talk and act so rapidly my brain just cannot keep pace, and so I want to go away to somewhere quiet where I can take my time to push my brain into understanding just what they are doing. As Bruce wrote, at times I want to hide away from the world and return to quiet surroudings that I am familiar with.

Perhaps your Mum would cope better if you only introduce one child to her at any time and try to choose a peaceful activity like playing with sand, or playdough. Try to understand that the huge effort that it takes to make your brain function at any level is so tiring for a someone with AD.

I also feel that the "emotion" part of me is declining. I don't experience those heights of emotion that used to be there, its a bit like feeling nothing when presented with the most magnificent gift, but on the other hand I felt very little when my Mum passed away recently. Its really odd!

I hope that this helps you to understand how your Mum could be feeling. Try and give her the time to enjoy her family in the way that works for her.

Heather

 

[Brucie]

Hello Heather,

I just had to send this message to thank you so much for the insights you have given us. I've tried so hard to understand the process my Jan has been going through.

Like you, I worked with computers [40 years in all] and universities in my working life, and I probably over analyse everything.

What you say makes me realise that my understanding of how Jan has felt has been largely on the right track. I think I understood quite a lot because I became very depressed myself, and that condition has many similar symptoms, which is why that is often the first thing tested for.

Thanks again!

 

[Nutty Nan]

Hi, Macca, this certainly does strike a chord: how well I remember the mortifying remarks my husband used to make in front of our grandchildren, and how many times I wept, knowing that it was all so completely against his nature! ("Why are they still here, don't they have any parents who could look after them?").

Not having as much time (and freedom to be spontaneous, noisy, boisterous, silly, nutty - hence my nickname from them) to be the sort of Nan I'd like to be is very frustrating, as I crave their company and they do, indeed, keep me going!

Many times when things were awkward I'd think it would be better if we abandoned visits - but whenever an opportunity presented itself, I'd be positive again (and a bit selfish?), and ask them to come over. It was often hugely stressful, as I felt caught between wanting to ensure that my husband was calm and contented, and at the same time letting the children play and have fun. The solution was 'compromise': they did not stay as often as I would have liked, the did not stay overnight very regularly, but they did visit, they never resented their Gramps for his grumpiness, and they soon sided with me in taking care of his needs - they accepted that toys would need to be cleared away regularly, so that he did not trip over them, they crept away when he appeared to nap, they responded to subtle signals from me when things were awkward, and they even accepted that Gramps was allowed to do (or not do) things that were absolutely expected of them. And do you know what: they have come to accept him exactly as he is, warts (moods and peculiarities) and all, they are protective of him and very affectionate towards him. On one occasion this Summer, when he got very stressed indeed during an outing which had, with hindsight, been a bit too ambitious for him, we hurried back to the car in great haste, just wanting to get back home before a big thunderous outburst, when our little granddaughter whispered to me "I have given Gramps my special stone [which she had found on our trip and carried with her as treasure] to make him happy again".

And just one more thing - it wasn't exactly a 'phase', but things have eased off a little. The children are getting older, and my husband a bit more passive. As his cognitive abilities have declined, he is more content to sit and observe, and it is not altogether unusual for him to join in with their singing, sorting bricks or cards, or just simply being 'nice' to them. He chats to their photographs when they are not here, and the other day he said when our grandson visited "oh, you are that handsome little fellow....".
Don't stop them visiting, just accept that you might have to give Mum a little space some of the time when she feels 'invaded'.

Apologies for getting a bit carried away here - this is rather close to my heart!

 

[daughter]

Aw, Nutty Nan, what a lovely post. Children seem to have a knack of accepting things much better than us grown ups, don't they? Your grandchildren have obviously inherited your sense of fun and sensitivity.

Hi Heather,

I'd like to echo Bruce's appreciation for your post, it really did help in my understanding too.

Hi Macca,

I have nothing much to add except that to say my Dad went through a 'phase' of aggression and swearing. I can understand that it made my daughters reluctant to bring their children round to visit, but nowadays Dad is calmer and more predictable. A few weeks ago he kept wandering off from his own Anniversary party, but his dancing two-year-old great grandaughter held his attention for much longer than we were able to do. So I would agree with Nutty Nan, that things could get better in some respects, as Bruce says, "There is no predicting how things will develop."

Best wishes,

 

[Norman]

We have 3 grand daughters one 11 years of age and twins age 7,all girls
I was blamed for all the girls arriving.
Because we did not have any daughters only Sons and I made it very clear that i wanted a dolly.
When the girls arrive there are kisses and hugs all round.
After that the one twin takes Nany over.
She will sit and talkt o her Nan,hold hands and show much affection.
If my wife walks off anywhere the little one has to go too,holding Nany's hand.and looking after her.
It's very touching to see and I am sure that somehow the little one senses that there is something wrong with Nany and she needs to lokk after her.
Norman.

 

[Norman]

we call her Nanny's Nurse!
Norman

 

[jc141265]

Children and AD

My Dad has 6 grandchildren under 10years and for five of the six years his house alway had children in it. Quite often Dad displayed all of the behaviours you talk about Macca and it could be quite upsetting. Their presence did indeed appear to stress him which like in your situation was hard to cope with because if there was one thing Dad was always a big softie for before Alzheimer's it was children!

However like Nutty Nan says, children seem to cope with it better than us. Over time, just explaining to them every now and then why Grandad did something, why he might squeeze their harm too hard or yell and bang things, etc. with explanations that just came to the head that were simple but truthful (i.e. Grandad has a problem with his brain and it makes thinking difficult, grandad is growing down like you grow up, as you learn things he forgets things, when Grandad sees reflections he thinks they are real, he can't help it and so on) is all we used and like Nutty Nan says the kids can come to understand their grandparent and grow to love them anyway. Also we always try to tell the kids about who he used to be.

My niece who never knew my father as a 'normal' man is adorable with him, as soon as she sees him she goes and grabs his hand and leads him all about the place (she's almost 4), bosses him around and ignores all his bad behaviours. She too would do something like giving him her special rock, she doesn't blink twice at any of what other people think is weird behaviours and doesn't even seem to care that grandad doesn't show her any affection instead she takes any affection she wants from him, kissing him and hugging him! The two eldest nephews on the other hand do appear to have a little resentment/dislike for their grandad because I think they knew him before so they suffer a lot of the pain we do.They also noticed how upset their grandma and mum were by Dad's behaviours and I think blame Dad for making life difficult for their mum and grandma at times. So Macca it may be a good thing if your children are younger.

Six years in and these days Dad lives at a home so doesn't see the kids much, but every now and then you glimpse a look of love sent their way from him when they do visit. Not often but it does happen. Recently it appeared to me that he was so overwhelmed by his sadness at not being able to show them that he sat there looking at them with that look and tears in his eyes. He was watching their every move.

Hope this helps,

 

[Macca]

Thanks

Just wanted to say thanks to everybody for your replies. It really helps to be able to share these dilemmas with you.

 

[connie]

Heather, thank you for your insight into AD. Your comments about 'emotion' really touch a cord with regard to Lionel's behaviour. He has just been told he is to become a grandfather (for the first time). He completely blanked this message, it is as if things that do not relate directly to him don't matter so much any more.
Strange. Connie

 

[Norman]

Hi Connie
I notice that certain things are blanked out.
If I have anything wrong it is blanked,I am never asked are you alright now.
I tripped and fell last Friday,went a right bang.
Bruised foot and painful knees.
There was no reaction from Peg,blanked it out completely.
Almost as if they don;t care.
I am not sure whether they don't remember or it is pushed aside and then it never happened?
Norman

 

[connie]

Dear Norman, I do hope the knee and foot are a little better now. I realise you recognise wher I am at. It is a strange world, you have to experience it to regonise same. Regards Connie

 

[Brucie]

Hi Connie and Norman

I'm a bit picky with words, so people tell me...

but there are different nuances with different words we use.

You have both used the term 'blanking out' and it seems to me that blanking out carries a measure of conscious effort or intent. You have to decide to blank something or someone out, either consciously or unconsciously.

I don't think that is what happens with dementia.

I think it is more that the person affected withdraws more and more into their own world. Perhaps that is wrong. Perhaps the world envelopes them.

Anyway, I think they become distracted with things that we regard as perfectly automatic, but which in reality, are all brain-driven. I think they have to divert all their power into keeping their body going as a working entity.

In times of emergency, priorities change. When your brain goes all fuzzy and you are desperately trying to make sense of the world, that has to be the priority. Words may have ceased to mean very much anyway, so when someone tells you something, it no longer carries the same message that it did.

It doesn't mean they don't care. It means they can't care, or that they can't coordinate themselves enough to show they care.

Words.... they can mean so much ... and they can mean so little.

 

[connie]

Bruce, very well observed. It is not 'they don't care' more they can't show they care'. It is not easy to deal with though.........although maybe easier for us than for them. Connie

 

[Brucie]

It is not easy to deal with though

oh lord no, not easy at all. I didn't mean that trying to understand the process makes it any easier!

I found that the very word 'easy' got expunged from my dictionary very early on in the dementia process.

I think my mental gymnastics in trying to figure out what the hell is going on, in some ways anaesthetises me from the pain of the reality. Whatever works, say I....

 

[Sandy]

Hi All,

I think that Bruce has made a very important point.

Part of the problem is that parts of our own psychological make-up, like empathy, seem so much like second nature, it's easy to forget all the complex thinking/memory processes that make them possible.

Here is a concise description of the development of empathy in children:

The typical two-year-old can identify the person who is in distress and may offer assistance. However, the assistance may be inappropriate. The two-year-old is most likely to offer assistance based on her own needs rather than the needs of the person in distress. For example, she may offer her bottle or teddy bear as comfort to an older child or adult. The toddler may want to help, but may lack necessary knowledge, skills, or insights into appropriate helping behavior (Barnett et al., 1982).

It is not until the child is approximately six or seven years old that she becomes cognitively capable of "walking in someone else's shoes." Hoffman calls this the role of taking stage and theorizes that the ability to assume another person's perspective results in increasingly appropriate helping behavior

If one compares those ages to some of the rough age ranges that relate to the Stages of AD (a given on the PDF file on the What Stage? Thread) it appears that as someone moves into Stage 6 (able to dress, shower and toilet unaided, continent - approx ages 2-5 years old) their abilities to feel and demonstrate empathy will slowly be reduced.

It seems a bit counter-intuitive that someone's thinking ability could effect their feeling ability, but the two are really related. Also, even if someone with AD feels a response, such as empathy, they may lack the skills to respond appropriately.

None of this information make the situation any easier to live with, but it can help a bit to understand that the changes in behaviour are due to loss of ability not loss of love.

Take care,

Sandy

 

[Nutty Nan]

You all make so much sense, and you express this complicated issue so clearly. However, it makes me think of time-and-motion studies, where (neat) theory and (chaotic) practice are worlds apart: we all know rationally that our loved ones haven't suddenly stopped loving us, but it still hurts when I've been for an uneasy doctor's appointment, and my husband doesn't ask how it went (because he hasn't actually realised my issue), or when I am in agony with a tummy bug and he suggests I could get fish and chips ......
One gets used to most things, and these examples are at least two or three years old. It was therefore even more significant when very recently, after a truly awful day and feelings of hopelessness I cuddled him and sobbed my heart out, and I suddenly felt his arms around me and heard him say "now, now, don't be sad". Needless to say, I sobbed even more, but just for a moment I felt he was 'back', and that meant so, so much!!!

 

[Norman]

Bruce
I think the term "blanked out"was used very loosely but I do agree that to blank someone the process has to be thought about.
The simple explanation in this instance is that I was unintentially blanked out because Peg had forgotten that I had told her in the first place.
She is in there and still cares ,she tells me so sometimes,she even tells me she loves me sometimes,these are the good times.
Blanked out was used in place of a long-------------I told peg I had a pain in my chest and she said I'm sorry.
She never mentioned again etc etc etc.
Words can say what you like but in this instance "Blanked out "saved an awful lot of them!!!
Norman

 

[Brucie]

Hi Norman

Hope you don't think I was being over picky about the wording..

I find that I am ever reminding myself that Jan is still in there somewhere, and as such, I turn every behaviour, every way I describe that behaviour, round in my head in search of enlightenment.

I spend ages trying to figure things out, and that has become a bit of a thing with me - call it obsession, if you like!

Mostly I wanted to reassure you that the blanking was most likely not something that was being done consciously.