My darling OH has Lewy Body. We are struggling with the practicalities of family life. How do people manage? I don't feel entirely comfortable leaving any one of our teenage children on their own with him, but that means unless we all go out together, we are stuck at home. How do people manage to do birthday parties? Last time I did a sleepover, my OH went out in the early hours of the morning. How on earth do we do holidays? A holiday which suits a family is not easily compatible with the needs of a PWD. - we used to enjoy camping!
Dementia and family life
- Thread starter Life
- Start date
Hi @Life ,
I do not have useful advice, I ' m afraid, because my situation is different from yours.
Re holidays, couldn't your children go on holiday with boy scouts?
If they are used to camping, they might like a new experience on their own, but with boys/ girls of the same age and grownups who check all is ok
I do not have useful advice, I ' m afraid, because my situation is different from yours.
Re holidays, couldn't your children go on holiday with boy scouts?
If they are used to camping, they might like a new experience on their own, but with boys/ girls of the same age and grownups who check all is ok
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Life, there’s lots of places where you can sleep in yurts, some basic, some almost glamping. Would that be better? I’m sure a quick internet search will bring up a few possibles. One of OHs carers used to have some, but they moved several years ago now.
Not sure how you cope with the days, though. Depends on your teenagers, I guess.
Not sure how you cope with the days, though. Depends on your teenagers, I guess.
Say more if you can about not feeling comfortable leaving any one of your teenagers at home with your beloved OH. I wonder if they would rise to the occasion?
Actually they are great, but the parent/child dynamic has changed, something the children struggle with. They are used to doing what he asks of them( mostly!) and mostly still do what he asks, but he really can't think through the consequences of what he says, is unreasonable and has made questionable judgement calls, which has lead to a couple of worrying situations. He also confabulates, hallucinates, and had a couple of episodes of paranoia/delusions last year. As a result of one of these school asked me if there is a safeguarding issue. When I talked to his social worker, the response was that the children are my responsibility and that I should arrange childcare, which of course doesn't exist for their age group.
He is also not fair and one child gets more than their fair share of blame.
The confabulation is a difficult concept, and, however much they might understand the concept, it still looks like lying to a young teenager and I worry terribly about the effect that has on them.
Thank you Margherita. You are so right, everyone's situation is different. Much of the advise on the internet seems to be aimed at the grandchildren of dementia sufferers and therefore doesn't deal with the day to day practicalities and emotions of living with a parent with dementia..
They do camp with the scouts, although they are in separate groups and the logistics can be difficult if the camp is some distance away.
I quite fancy a yurt!
As you say the days would be a challenge. Before this happened we'd be pretty active on holiday, walking, riding bikes and horses or sightseeing. I guess I'm struggling to find a holiday which is interesting and active enough for teenagers, but manageable for a PWD whose mobility and cognitive abilities vary and is which is a rest for me as well.
hi @Life
might a holiday in a place such as Centre Parks suit, as your teenagers can readily join in any of the activities, many of which are supervised, and can roam as they wish within the Park, while you and your husband can do your own thing, all coming together in the lodge, which I think are spaced well apart from each other so pretty private
might a holiday in a place such as Centre Parks suit, as your teenagers can readily join in any of the activities, many of which are supervised, and can roam as they wish within the Park, while you and your husband can do your own thing, all coming together in the lodge, which I think are spaced well apart from each other so pretty private
Of course, I understand and thank you for explaining. I am sorry the response from the social worker was so unsupportive. Is there a school welfare officer or similar, just for a talk-through and a bit of support? This is a tough situation and your children and you sound great. Please keep talking to us, too, it's good to hear from you. Thank you.
In a couple of weeks I will have 2 teenagers in the house, as you say most of the children affected are grandchildren, like mine, although if the PWD is in the same house as grandchildren the issues can be the same.
I don't really have any answers to help you I don't think.
My mum had to live with us for a few months and it did cause issues with the children and prior to that when she babysat (whilst childminder on holiday and we were at work) I realise some of the poor judgement calls she made which I got very cross about were due to dementia.
My daughter, then aged 12, found it hard to be at home on her own with grandma during those few months she stayed as dau was at local high school (less than 10 mins walk away) she was home a few hours before we were home from work. Dau was quite mature for her age and understood why grandma was behaving as she did, but at that stage grandma expected dau to do what she was told, and this made things hard. I think if she had had friends houses to go to she would have done, but due to bullying issues she didn't (long story and ultimately she moved schools) Doesn't help you, but just hopefully shows others with same issue.
As you say children are too old for childcare, his social worker clearly hasn't got a clue.
Have you explored things like daycare, so that children can have some time in the house without 'issues' arising - particularly with upcoimng school holidays.
Most schools have someone you can talk to who helps with pastoral support, your children are likely to be coming up or in the middle of big exams int he next few years.
I understand your comments re birthdays/sleepovers - I wouldn't have felt comfy when my mum was here to have a sleepover, her comments were too blunt at that stage, ironically now she would be unlikely to comment and be rude, with the progression. She would have expected to be able to tell the other children off when she deemed appropriate - applying standards of the 30s and 40s, not even my childhood era.
Some have found a motorhome works with a PWD, maybe this could work with a family camping trip (they can be hired) and a quite beachside campsite with coastal walks might allow some way of everyone getting something out of it.
I don't really have any answers to help you I don't think.
My mum had to live with us for a few months and it did cause issues with the children and prior to that when she babysat (whilst childminder on holiday and we were at work) I realise some of the poor judgement calls she made which I got very cross about were due to dementia.
My daughter, then aged 12, found it hard to be at home on her own with grandma during those few months she stayed as dau was at local high school (less than 10 mins walk away) she was home a few hours before we were home from work. Dau was quite mature for her age and understood why grandma was behaving as she did, but at that stage grandma expected dau to do what she was told, and this made things hard. I think if she had had friends houses to go to she would have done, but due to bullying issues she didn't (long story and ultimately she moved schools) Doesn't help you, but just hopefully shows others with same issue.
As you say children are too old for childcare, his social worker clearly hasn't got a clue.
Have you explored things like daycare, so that children can have some time in the house without 'issues' arising - particularly with upcoimng school holidays.
Most schools have someone you can talk to who helps with pastoral support, your children are likely to be coming up or in the middle of big exams int he next few years.
I understand your comments re birthdays/sleepovers - I wouldn't have felt comfy when my mum was here to have a sleepover, her comments were too blunt at that stage, ironically now she would be unlikely to comment and be rude, with the progression. She would have expected to be able to tell the other children off when she deemed appropriate - applying standards of the 30s and 40s, not even my childhood era.
Some have found a motorhome works with a PWD, maybe this could work with a family camping trip (they can be hired) and a quite beachside campsite with coastal walks might allow some way of everyone getting something out of it.
I wish we were great at managing. In truth it's difficult and a lot of the time at least one person is not happy: Unwell dad, stressed mum and teenage hormones isn't a great combination and life with 'Lewy' can be chaotic. Hence my attempt to cling to a bit of normality with family holidays, birthday parties etc.
Sorry as I am for myself at times the posts on PWD who have young children is giving me more cause for concern. It cannot be right that single parents are struggling to earn a living, raise children and look after a person with dementia. When the ill person is at home the pressures on everyone sound intolerable to me both emotionally and financially. My widowed mother raised three of us on her own so I know first hand how difficult it can be.
We are an advanced country with talent in abundance yet we haven't even begun to seriously discuss how to tackle this issue. We are still behaving like the world's elder statesmen spending fortunes on dubious enterprises while ignoring these very real issues at home.
We are an advanced country with talent in abundance yet we haven't even begun to seriously discuss how to tackle this issue. We are still behaving like the world's elder statesmen spending fortunes on dubious enterprises while ignoring these very real issues at home.
Please see The Times today, correspondence, huge column on plight of us carers, hard-hitting and pretty comprehensive. We're out there. Gx
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