Children and Dementia

[jackie1]

I often read about the resilience of children. And while I do agree with this to an extent, I worry that it causes us to deminish the impact dementia has on children.

Our oldest (10) is very empathic and a worrier and so feels all his daddy's suffering (55 with Alzheimers). It also takes him a long time to fully share his concerns. So I was very glad a little while back when he asked me the following questions:-

a. How are we going to pay all the bills, and what would happen to them (our youngest is 7) if I have to go back to work full-time - he clearly hears more than I think he does!
b. Will Daddy go into a home
c. How much worse is Daddy going to get – Horrid one to answer as I try to block that out
d. Will Daddy die
e. What will happen to them if I die
f. Would he get it – Told him it was unlikely and that a cure will hopefully be found within the next 40 years. (This is one of C’s biggest fears, and he often alludes to having a problem with his brain that causes him to forget things, which is very distressing for both of us).

I think what I am trying to say, in a very roundabout way, is that we should never assume that children will simply adapt.

 

[Grannie G]

Dear Jackie,

You are right, we must never make assumptions about children`s feelings. Your son is rightly worried, his security is at risk.

The link below might help you.

http://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=108&pageNumber=1

 

[CraigC]

Hi Jackie,

It is a little different for me as it is my daughter's grandad who has dementia. He has had it since she was about 2 and she is now 9. All I can say is she has become a carer in her own right and adapted pretty well. She loves caring for him and she is actually the person most connected and remembered by him.

However, what surprised me is the kind of questions she started to ask over the last year. A few things that seemed obvious and I assumed she knew - like "is it catching". Made me realise that there is a lot more going on in her head and a lot of unanswered questions. Luckily my daughter likes to talk and we've tried to give her as many answers as possible. She has even been known to frequent this forum (under supervision of course).

Totally agree with your comment that it is dangerous to assume children will adapt, and thanks, I constantly need to remind myself this! It is a lot of a child to take in and often we (well I) expect a little too much from her. All I can hope is she keeps talking and asking questions.

I've have a list of kids/children's books relating dementia if you'd like me to pass it on?

Kindest Regards
Craig

 

[BeverleyY]

My two girls (7 & 13) have have my Dad living here for 5 years. The youngest doesn't really remember a time without her grandparents here.

I guess I have just adopted the view of kids adapt, and I would say in our case they have. Maybe it's easier, because it's not their parents so know their own security is not at risk.

They are sympathetic to my Dad's illness, and my youngest even questions choices we make 'should we go there, or do that, it might confuse Grampi a bit' she says.

I haven't shielded them from his illness, and my eldest does know the ultimate end - but, this is the life and hand we have been dealt.

I appreciate, that for a young child who has a parent that is ill, it must be scary and daunting. I do believe that, that without being too graphic and scaring them, that honesty is the best policy.

Best wishes.

Beverley

 

[jackie1]

Don't get me wrong the children have adapted, they have no choice. And on the surface they are bright, lively, happy and caring boys.

What I am trying to say is that we shouldn't simply take that at face value. Even in very young children there is an awful lot going on in their minds and we need to be aware of this. And encourage them to chat about it, as and when they feel comfortable.

Our children have already been cheated out of a future with their daddy and it is my job to ensure that they not cheated out of a childhood. At least as far as I am able while trying to care for my husband as best as I can.

Saldy for all of us, we have no family near by so it all falls to me.

 

[BeverleyY]

Don't get me wrong the children have adapted, they have no choice. And on the surface they are bright, lively, happy and caring boys.

What I am trying to say is that we shouldn't simply take that at face value. Even in very young children there is an awful lot going on in their minds and we need to be aware of this. And encourage them to chat about it, as and when they feel comfortable.

Our children have already been cheated out of a future with their daddy and it is my job to ensure that they not cheated out of a childhood. At least as far as I am able while trying to care for my husband as best as I can.

Saldy for all of us, we have no family near by so it all falls to me.

I did understand you - hope it didn't come across as I didn't.

I was merely saying I had adopted the they will adapt attitude. Of course, I have often asked myself if I was right in my assumptions.

I can't begin to understand what you are going through. It's hard enough for my children with it being Grandparents that are ill, without it being either me or Paul.

I've asked myself many times if I have compromised their lives for the sake of bringing my parents to live with us. I guess I'll never know. It's not easy weighing up the pros and cons - the extra memories created, the extra cuddles with their Nanny and Grampi vs. the stress, the tears

Ah.. life.

Beverley x

 

[Westie]

Hi Jackie,

Haven't heard from you for a while and hope that you are all coping ok. This is such an emotive subject, and I too worry greatly about the impact on my children of their Dad's dementia. Yes, on the surface they seem to be managing but deep down I'm not so sure.

My son is a little older than your children (15) but my daughter (10) is at the same stage as your son. They are both very quiet and accepting of their situation. Both help me with all sorts of things whenever they can. My son cooks, irons, walks the dog, does any DIY things he can manage, helps his sister with schoolwork - even hoovers! My daughter will also help in lots of ways and never complains that she is often taken to or collected from school by a variety of people - often at short notice.

This all sounds ideal but where is their anger at their loss? They should be out with friends instead of propping me up. Why don't they complain when I can't do things with them because I'm needed for yet another appointment/meeting about their Dad?

I too will have to work more hours soon - needs must. But I worry about the impact this will have on them, particularly the youngest. She needs me so much but tries so hard not to show it.

We will need to move house this year to reduce the mortgage. Yet another blow for them to cope with - the loss of a much loved family home and all the associations which go with it. Do they complain - not a bit. They've even said a change will be nice and saves worrying about decorating the kitchen(desperate!).

Should I be worried about them? I don't know. But I do know that it is for them that I cry the bitterest tears of anger and the sheer bloody unfairness of it all. They are my life and I'm unable to make things right for them.

Mary-Ann
x

 

[Grannie G]

. They are my life and I'm unable to make things right for them.

Mary-Ann
x

Dear Mary-Ann,

Perhaps, apart from being able to make their father well again, you are making things right for your children.

Perhaps the terrible illness their father has, has enabled them to get their priorities right. Perhaps they are learning, all too soon admittedly, the value of things money can`t buy.

From what I`ve read of your children, and other young people on this Forum, they are a credit to their parents, to themselves and to Society.

Of course their lives would be better and happier and much more carefree with a well father, no-one can do anything about that. But I think their strategies for coping are amazing. And you and your husband must take credit for that

Love xx

 

[christine_batch]

When my husband was diagnoised at 58, Peter who had always been a hands on Grandad. School runs, taking them to dancing, singing lessons, football, quality time with them, when they were ill, the list goes on.
Explaining to them about their Grandad's illness - the older ones wanted to know all about AD whilst the younger ones were told Grandad had a poorly brain.
With the subject of Children and Dementia, it does not matter that your own children are grow up and have children of their own.
The day I came back with the diagnoised and "my children" asked me how do you want us to deal with it.
So I knew about AD before Peter's diagnoises but when it is a loved one, that puts a completly different perspective on it.

I had to think how I wanted it to be handled.
So the family meeting of the Adult children took place. Carry on as per usual, Peter was still head of the family.
As for the Grandchildren, they treated their Grandad as usual and on times he got confused , they would patiently talk to him.
The two Grandaughters who were 8 and 11 at the time kept diaries and wrote their thoughts and their memories down.

So for the last 10 months Peter has been in an E.M.I. Unit, the children and Grandchildren always talk of him with so much love and very happy memories. That is something that AD will never take from them.

Christine

 

[KenC]

Hi All

When I was diagnosed in 2003, my son (24 years old ) never said very much, and in some ways I felt a bit upset. Recently he has told me that after all the Society and the Branch, has done to help me to live again, he is going to do a sponsored cycle ride from Whitehaven to Sunderland.
When I spoke to him about this he said that he found it difficult to come to terms with, and unlike his sister who coped with it very well, he really felt upset and said that he felt he could not speak to anyone about it, or he was unable to find anyone to speak to.
I now feel that he has turned the corner and we are on very good terms again, not that we were not before. But it was a little difficult.

I think it depends on how we cope or are allowed to cope with this illness, but I also I think we all cope in different ways.

Best Wishes

Ken

 

[DianeG]

Jackie (& all contributing to this thread),

Great points well made. Regardless of the age of the individuals affected by another person's illness we have to remember that we all think quite differntly and process things at different paces. Children in particular require careful support but can often provide us 'grown ups' with the extra drive to go on just by the simplicity of some of their words. We have lots to learn from them!

My son is just 4 and my mum is 57 - he knows that his granny Joan is different and it is quite humbling to watch how his behaviours change around her.

Diane x

 

[DianeG]

Childrens books

Craig,

I'd very much appreciate any links you could provide to sites I can locate books for children relating to dementia either through PM or this thread (whatever is the most appopriate)

Diane

 

[gigi]

My son is just 4 and my mum is 57 - he knows that his granny Joan is different and it is quite humbling to watch how his behaviours change around her.

I've noticed this with my 4 year old granddaughter..she's on the same wavelength as my husband(who has AD)

She mothers him..waits on him hand and foot..the pair of them watch TV together..and she is so gentle and loving towards him..it is humbling..and very precious!!

Love Gigi x

 

[clarethebear]

It is amazing how young children seem to adapt to this condition. I can remember on many a morning my son could be jumping all over me play fighting, and then we would go and see my Nanna and he would be so gentle with her.

I remember one day when we went to see her, she grabbed hold of him and shouted at him. This was because she thought he was running off, he turned round to her and said it's all right, I'm not going anywhere. He just seemed to take it all in his stride.

One of the things I always did before and after every vist was to talk to my son. I made sure I never lead him in any of the conversation. Even though he was and still is young we talked things through.

Take Care
Clare

 

[hendy]

I am always amazed at how my 10 year old son falls into the caring role when visiting Grandpa, he always knows what to say and despite the gobbledy gook can keep him chatting and get an occasional normal answer. He will hold hands and go for a walk round the ward. I have tried to explain the disease and its effects(vasc dem) in an informed but unfrightening way. However its a tough one to deal with at any age and you can't protect children entirely from the cold truth... I think what is important is how we try to cope and accept. The biggest lesson I think my son is learning is how to be compassionate.
Hendy

 

[arun]

My Mum loved being with her grand children.
My daughter was 9 yrs old when we discovered Mum had dementia.
We explained to her that Nani may say strange things and not to let it bother her

As older people we used tend to react negatively to accusations Mum used to make.
My daughter used to smile and shrug her shoulders.

She was a great source of solace for Mum.
-------------------------------------------
Towards the end of Mums life. She had to placed in a care home in India.
This is nothing like what one would expect in the UK.
The home was run by an Anglo-India family. Dad was Dr. Daughter in charge of admin.

What was lovely was that every evening the Dr would do the rounds with his grand daughter.
Apparently this was the highlight of the day for my Mum.
Often she used to call this girl by my daughters name.
She had also begun to form a bond with this 6 yr old child.
Who for sometime after Mum passed away used to ask when grand aunty
as she used to refer to my Mum) would return.

Hats off to the kids!!!!

 

[hendy]

Hi Jackie1
Just to add to my earlier posting. I know our experience is with Grandpa and not Dad. I think there must be a world of difference. The emotional toll on you all must be very great indeed. I dont know how much support I can give you, just to say that my son does cope, but it is at a price. He does worry about grandpa and finds the illness difficult to understand, of course as we all do and this is normal. I do not know how much practical support there is for families in your situation. Do you find you are getting enough support and advice from family and the various professionals involved in your husband's care?
kind regards
hendy

 

[ClaireS]

What's best for my children?

I am new to this site but having trouble coping right now which is why I've posted this. My Mum was disagnosed just over a yr ago with Alzheimer's and she's entering the last phase as her Doctor says. Its her birthday today, she's 60 - but she opened the door to my children this morning querying whey they had cards and flowers. My youngest is 7 and she seems to be able to cope better than all of us, my eldest is 10 and is very close to his Nan but is really struggling with the aggression and change in personality that's happened. He's aksed all the questions, even those we don't like to face but I've felt its right to be totally honest. The battle I'm having now is that my Dad is the main carer and I help as much as possible but I'm a single Mum and work 3/4 days a wk and at the end of last yr I made the decision to move away later this yr. Its not too far, 20-30 mins drive at the most but I feel that its something I need to do for not only myself but my children. If I stay 2 mins away my Dad will call me - quite understandably - on a regular basis to help and again understandably I would, but as I'm on my own I don't want my children then growing resentful of the situation, me or their grandparents as they're having to be shipped off to friends etc. as although I am honest over the disease I also don't want them seeing some of the things that occur and will occur as she progresses. I know its the right thing to do but why do I feel so guilty??

 

[Grannie G]

Hello Clare,

I don`t think anyone can advise you. It is your situation and you have to be the one to make the decision. You can only do what both your heart and head tell you is right for your family.

If you feel moving is something you have to do for yourself and your children, then it is right for you to do so.

Whatever your decision, I hope it will be the right one.

Take care xx

 

[jackie1]

Hello Claire,
As Sylvia says your are the only one that can make that decision, I know that's not much help to you. All I can suggest is maybe writing down the pros and cons for each.

If you make the decision to move may I also suggest that you look into what support you can access for your dad. Speak to the social worker and contact crossroads, they may be able to arrange for some to come in or a regular basis so many times a week so that he can have a break.

Take care,
Jackie