Children and Dementia

[jackie1]

Hello Hendy,

That is a difficult one to answer. Our nearest family is nearly 80 miles away and that's my family. But my mum is completely tied up with caring for my physically disabled dad 24/7 while at the same time trying to help my brother on the farm so that they can all keep a roof over their heads. John sister is in North Yorkshire and his mum in the Isle of Man.

As for the professionals they do their best but apparently John is the first alzheimer sufferer with a young family that they have had to deal with! There are no day care facilities available, but (at our cost) we have someone come in two morning while I'm at work.

The children are now registered with Young Carers and they arrange outing etc. This is brilliant as a taxi picks them up and bring them home so I don't have to juggle.

Most of the time I manage OK but at today I'm feeling very trapped as despite trying every option I can't spend a night away with my girlfriends to celebrate a 40th.

Thank you for asking
Jackie

 

[ClaireS]

Hi Jackie and Grannie G

Thank you for your messages - I'm having a low day and was feeling sorry for myself when I posted my initial message but boy do I have it easy compared to most of you. Feel quite ashamed now.

Jackie, as to your situation with work, we were given some details on Able Care which provide live in carers, maybe this could benefit you, especially with work - its so frustrating that you don't get any help, my heart goes out to you and I was in tears this morning reading your message thinking about your children, they're similar ages to mine. I think the fact that our relatives are young that doctors, groups etc do find it hard to give support, my Mum doesn't want to sit at a day centre with 80yr olds & financially the help is more geared to people collecting pensions. Best of luck with it all, keep smiling x

 

[BeverleyY]

My Mum doesn't want to sit at a day centre with 80yr olds & financially the help is more geared to people collecting pensions. Best of luck with it all, keep smiling x

Claire.. my Dad is 82 (83 in 3 weeks time) and even he doesn't want to sit in day centres with 80 year olds. As for financial help, it's not geared to any particular age group - my Dad get's no financial help whatsoever.

For me, I don't think the day care is unsuitable because of the age ranges, I think it unsuitable because they do not group people at similar stages in this illness. Realistically, the term Dementia covers such a broad range from the early stages of memory problems through to the end stages where speech/mobilty are lost etc.

The Day Care we tried did seem to have people ranging from their 50's-80's, but they were all at a much further advanced stage than my Dad and I think putting him in there would have destroyed him to be honest.

I think there is just a woeful lack of support in general

Best of luck.

Beverley x

 

[hendy]

Hi jacqui

Young carers sounds great especially since you dont have to organise it!!
It must be so infuriating to think there isn't any day time care facilities or respite arrangements available for you. I'm sorry I cant suggest anything apart from the obvious (social services)!! ? I know its Its hard to put yourself first in an amonsgt everything, but you definately deserve a worry free night out. Would it be worth getting onto them again?
My thoughts go out to you, wished I could be of more help.
kind regards
hendy
ps just another thought about the children. Have school made any special mention of them on their 'vulnerable children' register?

 

[jc141265]

Impact

The hurt in my brother's eyes that comes from the memory of Dad hitting him and yelling at him and accusing him of maltreatment I don't think will ever go away. Nor the sadness that is in him because he can't forgive his father, even though logic tells him he should be able to.
The fact that my wonderful marriage is now crumbling because all my mind wants to do is to run away from the horrible memories and pain and it doesn't matter how much I love him, I just want to get away and start anew without reminders of the last 10yrs.
My sister's decision to face the full brunt of it all, and live a life less than she dreamed....
My struggle now with being in the midst of what the marriage counsellor says is 'caring burnout' where I can't seem to feel anything for anyone anymore. I mean I care, but my mind refuses to attach in such a way that I care enough to risk getting hurt. Its no good telling me that its safe to care, and its better to love and lose then to never love at all, because all my experience says otherwise.
This is the impact that this disease has on the 20-30 something children of dementia sufferers. I cannot imagine the impact Dad's disease would have had on me if i were younger, but I can say from my family's comments that despite what people think, being the youngest has not spared me any pain, if anything it has brought greater confusion, because I had not at the time of his diagnosis separated my father from my own identity.
Perhaps it is easier if the children are dealing with the dying of a grandparent, as I know I didn't suffer this much when my own grandparents died, perhaps because there was always an expectation that this is what old people do. I guess it depends on the relationship one has with the person who is ill, but I was very close to my grandparents, but they did not represent my security, and myself.
So I would never ever say, that the impact of losing one's parent is minimal when you are their child. You lose a piece of yourself, you worry about your other parent, the mortality of yourself, your other parent and all the people around you becomes something you can no longer avoid thinking about.
Possibly the best thing to do for a child who has to go through this is to let them know that you know that this is hurting them very badly, let them know that there are safe places they can fall if they think they can't cope anymore, let them know that nobody in the world can know how this effects them unless they too are living it, give them hope by showing them the beautiful things that are still in this world, tell them how much their Dad or Mum would have been proud of the things that they do and tell them that you know this because you remember the person that they were so well (because us kids forget them and don't trust the memories we do have after all these years).

 

[jackie1]

Oh Nat I am so sorry that this awful disease is now impacting in such a terrible way on your marriage and I really hope that you can work through it (easy to say I know) and you are probably already trying everything you have the energy left for but would it be possible for the two of you to have a long holiday where you can just switch off, if only for a while? My thoughts and prayers go out to your family.

Yours points about security and memories are so right. For our 10 year old I think that security is his one of his biggest worries. Despite all my efforts he has picked up on my concerns about money. But he is really scared about what will happen to him and his brother if anything should happen to me. To calm him awhile back I had to show him my will and the letter regarding their care that goes with it. He also was the focus for a lot of J's anger about 18 months ago (thank goodness this passed fairly quickly, although I know it says with him).

For the 8 year old I honestly think he no real memory of having a "normal" daddy - which is probably a blessing, But I have plenty of photos and videos for when he gets older.

Love
Jackie
xxx

 

[sarah<3]

hi, well im 15, and my aunty has alzheimers and so did my gran.
I'm finding it hard, because no one has really talked to me about it, and so im having to find out every thing by myself.
Thats how i came across this.
I think its important to explain what is happening, even though they are children. I didnt understand what was happening to my gran, as i was 6 when she died, and she had alzheimers for about 15 years.
I think its a lot harder to cope with this kind of thing happening if your family doesnt want to talk about it, as at the moment they seem to be acting like nothing is happening.

sarah
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[heartbroken]

HUGS
good for you looking it up it helps alot to understand what is happening.
I have a 7yr old and as she has to come with me to her grandmas I have sat her down and explained the best I can to help her understand, she often helps us to get grandma to carm down but it is still hard for her.
have you asked your family what is happening ? try to get them to talk to you and show them this site as they to could be frightened and worried not knowing what is happening.
any questions please ask someone will try to help you understand this terrible illness

 

[sarah<3]

thank you
well my mums a physiotherapist, so she knows all about it, but shes never been close to my aunty, and so shes taking a very 'heartless' view to it
my dad was talking to her about if my aunty stops breathing, then they decide whether or not they are going to resusitate, and she was just saying how they shouldn't
i think i understand about alzheimers, but i'd just like to talk to my parents about it
i dont want them to know im getting upset, as i dont think they know
thanks again

sarah
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