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What do we do?

heldaz

New member
Jun 15, 2021
3
0
My brother and I are at breaking point an desperately need advice. My mum has recently been diagnosed as having mixed dementia and is severely sight impaired but has no insight into her conditions and says she can do everything the same as always , my father has been diagnosed as having critical cardiac failure and kidney failure and has been put on palliative care with a hospice. This has all happened within the space of 10 weeks and it has been 10 weeks of hell. My brother and I have been proactive and have got social services to help them with care packages and some adaptations but mum and dad keep telling everyone they don't need any help and their son and daughter will do it and even turning people away. Dad is in hospital and mum doesn't like being on her own at night but doesn't realise that she get up 8-10 times a night then gets up at 5am and calls us liars if we say she did. Either we, my aunty or family friend (both retired and in late 70's) have to stay with her but none of us gets any sleep when its our turn. My brother and I have very busy jobs and cannot work without sleep and my brother is getting into trouble for taking so much time off to arrange stuff for them or because he is so tired. We are both mentally and physically at breaking point. Everything with my parents seems to be a no or a negative response, with their favourite answer being we'll see when we recommend something to them like a night sitter. They have money and could pay for extra care but are refusing - should we walk away to force their hand to accept more help and not keep thinking my brother and I will do everything 24/7 for them?
 

CardiffGirlInEssex

Registered User
Oct 6, 2018
304
0
Unfortunately this refusal to accept reality is common, especially for people with dementia. Your circumstances are exceptionally difficult and you've been amazing to keep things together for so long but it sounds like you and your brother are at burn out point. Sad as it is, I suspect the only way to get the essential support is for family to step back, having notified social services that's what you're doing and reminding them that they have the duty of care to ensure both these vulnerable people are safe.

While your dad is in hospital he is safe. Your mum needs a proper needs assessment and I would think a capacity assessment too. Do you have a diary or similar of the night time waking episodes and other examples where you're giving her care that she will deny she needs? Put it all in writing and send it to her GP and the social worker, and also make it clear that whatever your parents say you and your brother cannot continue to provide care. You will be pressurised by social services to carry on so be prepared and stand your ground. This is a really difficult situation and I really feel for you.
 

karaokePete

Registered User
Jul 23, 2017
6,198
0
N Ireland
Hello @heldaz, you are welcome here and will get support from the forum members.

Many people with dementia will react like your parents and it is sometimes said that one has to wait for a crisis to get something resolved.

I would second what has already been said as both your parents and Social Services are unlikely to do much differently while you stay involved. Stepping back may be tough, but it may be tough 'love'.
 

heldaz

New member
Jun 15, 2021
3
0
Thank you both, it was the only way we could see of showing them they need support and we cannot provide it all - in one day my brother took/ made 57 phone calls for them. I am doing the shopping and washing on weekends which I don't mind doing at all but cannot do this as well as their medical appointments, meeting and then if dads in hospital no sleep. They have always been very insular and don't like to open up too much to professionals in case it takes away their control. The situation is also taking its toll on my brothers family and mine, because for so long it was just the 4 of us we have always had a 'they call, we come running attitude' they expect us to do that now too which isn't easy with jobs and lives. They would go ballistic if they knew I was sharing this and we have always been in fear of upsetting them and disturbing the peace because its 'not what we do'.
 

canary

Registered User
Feb 25, 2014
15,346
0
South coast
This is a challenging time for you @heldaz . It is hard to change the habits of a lifetime, but if you dont I think you will reach carer breakdown and your jobs, families and health may well be at risk. We have all had to change the way we deal with things and the way we relate to our person with dementia, but I think it will be particularly difficult for you.

Unfortunately, your mums reaction is almost the norm - the default response from people with dementia is almost always no and say that family will do it all. They are unable to understand how much it costs family members and all the time your and other family members are plugging all the gaps your mum has no reason to accept outside help.

You and your relatives need to work out what you can, and more importantly, what you cannot, do and stick to it. Contact SS and say that the family is no longer able to meet your mums needs. I honestly think that your mum needs to be in a care home now so that she has a whole team of people to keep her safe at night who can then go home and sleep at the end of their shift.
 

heldaz

New member
Jun 15, 2021
3
0
I just spoke to my brother and he has got calls with SS tomorrow and said he will lay it on the line that we cannot help them anymore to this all encompassing level . They both say they are capable of making decisions (all my dad will admit to the professionals is mum has some issues with memory and cannot sign her name well) so social services can deal directly with them. When the mental health team visited last week and spoke to them individually all dad said was the above and that sometimes mum has a wonder round the house at night. He is being too proud and needs to admit there are serious issues - mum smokes and has burn holes in all her clothes and we have seen burns on her skin. We have told SS and the GP about this previously but they need to talk strongly to them about the situation. We have tried but it falls on deaf ears as we are 'just the kids'. All your advice has been helpful and I passed it on to my brother. Its good he and I are on the same page about this now as to begin with he did think he could do it all for them but has realised if mum and dad won't give something we can't do everything. I agree with the care home recommendation but dad said that cannot happen and has tried to get us to promise we wouldn't put her in one if he's not here but I told him I couldn't promise that, my brother did promise but has realised it is not realistic.