How many more family members do I have to lose to this disease?

Discussion in 'Younger people with dementia and their carers' started by queenquackers, Jul 15, 2015.

  1. queenquackers

    queenquackers Registered User

    Oct 2, 2013
    19
    While my mum is entering the later stages of dementia, I'm becoming increasingly worried about my dad (Mum's primary carer) and my nan (Mum's mum). My dad is still working full time, as he cannot afford to retire yet, and I know he's really been struggling for the last few months. He's always been quite 'stiff upper lip', but just recently he's been uncharacteristically open and emotional when talking to me on the phone, and has stated that he feels like he's 'losing [his] mind' a lot of the time. Mum always said she'd rather die than end up in a 'home', so that's out of the question as far as Dad's concerned. I've offered to help if needed, but live some distance away, and we both know that Mum rarely, if ever, let me help her even in the earlier stages of her dementia.
    My nan used to write to me at least once a week for the last 6 years (ever since I went to university), but now the letters and emails have petered out, and this worries me as Mum used to write to me too in my first year at uni - in retrospect I think she stopped because she started to have problems with reading and writing. I know that the lack of communication in itself isn't an indicator of dementia, but it still worries me. Nan is understandably very upset at seeing her daughter fade away before her eyes, not to mention exhausted from frequently driving an almost 300 mile round trip from her house to my parents', and her age (76) makes her even more susceptible to dementia than my mum was (now 53) .
    I've read somewhere that there may be a link between stress and dementia, especially stress caused by caring for a loved one. Whether this is true or not, it's undeniable that Mum's illness is having a detrimental effect on my dad and nan's mental health (and by extension, physical health), and I have no idea how to help without potentially offending someone.
     
  2. MeganCat

    MeganCat Registered User

    Jan 29, 2013
    356
    South Wales
    Hi queen quackers

    I'm sorry you are seeing your mum suffering from this at such a young age (both you and your mum). Your dad must be very upset and stressed too - which can cause similar type symptoms anyway, especially if, as you say he's being uncharacteristically more open - perhaps he's at the stage now where he realises he needs some support. Does he have any support eg day centre for mum, carers to allow him to have a little time for himself to recharge. He needs to look after himself to enable him to look after your mum. He could get an assessment to see what support is possible. Now might be the time to broach it with him, especially if you tell him you are so worried. I can't see why he should take offence at you being a caring daughter - you aren't criticising the great job he's been doing, but I don't believe anyone can cope alone with no support at some point. Mum didn't want help and I had to start small - carers to come in and heat meals (so I wouldn't worry so much in the cold weather - she agreed to try it, and actually liked the food and the company of the carers popping in) and build from there (personal care - which she always resisted but one of the older carers could persuade her) and sell it that I wasn't trying to take her independence from her but to keep her independent longer in her own house - which was what she wanted.

    I know what you mean about a care home, my mum was the same but being single working full time the other end of the country meant it was the only option when she could no longer safely live alone. I moved her to a home near me and she settled within a few months and we could spend quality time together, rather than spending all my time with her fire fighting. She is very content there, and doesn't realise she's not in her home city, but has sadly deteriorated a lot and needs 2 carers to help her mobilise anywhere. The guilt monster has loosened its grip on me as she really is in the best place being cared for by carers who are kind, seem genuinely fond of her and are not exhausted as they get to go home at the end of the working day. I think it's less emotionally exhausting caring for someone whos not your relative too as you aren't dealing with loss at the same time.
    I hope you manage to get some support and reduce the pressure on you all a little bit xx
     
  3. Jasmine123

    Jasmine123 Registered User

    Jan 22, 2014
    40
    Hi Queen Quackers

    I'm sorry to hear about how you are feeling. My mother is also in later stages of dementia though she is 60 now. My dad is her main carer. Whenever my dad says anything even slightly forgetful I have an immediate feeling of deep fear that my father has dementia too. And then when he remembers some obscure fact I then feel relief. I think it is quite irrational, but I guess it comes from the fear of losing both parents to dementia. I try and rationalise it in my mind by making myself realise that not everyone gets dementia and thinking that none of my friends have parents with dementia so the liklihood of my dad getting dementia is very slim. I still can't help but worry though so I understand how you are feeling.
     
  4. queenquackers

    queenquackers Registered User

    Oct 2, 2013
    19
    Mum has a carer come in twice a week now, but 24 hour care is virtually impossible to come by without resorting to a care home (and we are approaching the point where this will be needed far faster than any of us would care to admit). My dad has also hired two other women to help with the housework and gardening, which is a real shame as gardening used to be one of his favourite pastimes. From the little I can glean over the phone (Mum has taken to 'shadowing' Dad everywhere, so private conversation has become something of a luxury) they are awaiting a Carer's Assessment, so may soon get more help - just as soon as the local authority get their act together!
    I know not everyone gets dementia in the end, but as my great nan (Mum's mum's mum) had it shortly before she died (in her late 80s, I might add, so nothing to indicate that Mum would get so ill so young), I do still worry about my nan. She texted me 3 days ago promising to 'drop me a line' soon - I await tomorrow's post with bated breath :/
    Thanks for the reassurance all the same - must remember to try to think positively.
     
  5. queenquackers

    queenquackers Registered User

    Oct 2, 2013
    19
    Lovely long newsy letter arrived today - a few names muddled up, but Nan's always been a bit 'ditzy' about things like that. Will keep my eyes peeled for any further worrying incidents.
     

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