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Dementia and Alzheimer's

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In pieces, struggling to cope

6 replies

Nankles · 13/01/2019 18:24

After being hospitalised following a succession of recent seizures my lovely dad was diagnosed with a malignant brain tumour this week and associated dementia. He is now home from hospital but his cognitive decline has been rapid just in the last few days. I’ve been staying at my parents and the nights are heartbreaking. He wanders around the house, utterly disoriented, opening drawers, checking locks and saying he needs to feed his fish (he’s not had a fish tank in over 5 years). He thinks the nights are morning and vice versa. Mum is following him around at all hours worried he will inadvertently harm himself. I’m devastated to see my tall, strong, protective dad suddenly behave like a lost child. And I am worried sick that my mum is going to burn herself out mentally and physically with the strain of desperately trying to keep him safe morning, noon and night. I live 300 miles away - my sister lives 30 miles away from them - and whilst we coordinate ourselves so we are there each week, as much as possible (we both have young children), my mum is taking the brunt of this ‘new normal’. Do you have any practical advice on how we can support mum and dad? This is all new territory and I feel weak and overwhelmed.

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bilbodog · 13/01/2019 19:18

So sorry you are having to deal with this. I would suggest speaking to the alzheimers association and macmillan to see if they can suggest things which may help. If there is a hospice nearby they might do day care where your dad could go to give your mum some respite and there may be some local groups which meet up where carers can go to get support from others in a similar situation. I wonder if the dr would prescribe sleeping pills to help your dad sleep at night so mum can get some rest?

BookMeOnTheSudExpress · 13/01/2019 19:20

So sorry.
Do post on the Elderly Parents chat thread. Lovely supportive people on the same journey.

helpfulperson · 13/01/2019 19:21

The family need to get social services on board. Your mum can't manage on her own - that is a hard reality to get used. Social Services can help get a care package in place. That might be respite care, regular carers coming in etc. Depending on financial circumstances they may need to pay for it though. SS should be able to provide details of local support groups etc.

What have the medics said about future prognosis? My Dad's GP prescribed some type of sedative which made him much more settled.

It sounds like you and your sister are doing as much as you can and from sad experience the more you do the less Social Services will do so don't feel bad at not being able to be there as much as you would like.

yawning801 · 13/01/2019 19:22

Flowers and a handhold

Moondancer73 · 13/01/2019 20:33

Is there an age U.K. near you who could offer advice, or who maybe even just have volunteers to come in and help your mum a little to ease the pressure?

Nankles · 14/01/2019 10:38

Thanks for your replies and advice. And sorry to those of you who are in the midst of similar experiences. Last night was hard work again for mum - my sister is arranging a GP visit so hopefully we can explore some of the options suggested here.

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