Newbie!

On a journey

New member
Sep 13, 2018
6
0
Dear all, I've just joined this online community because my mum (87) has dementia (Altzheimers, Vascular Dementia and some frontal temporal lobe damage - so a triple whammy, bless her). She's being cared for by my dad (84). They live 2.5 hours away and up until last year were both amazingly mentally well and physically coped with the usual afflictions of older age - arthritis, osteoarthritis, etc. Then Mum's behaviour became very odd very suddenly (she was psychotic for 3 months before a proper diagnosis was made - waiting lists, etc). They have an excellent local G.P. and now Mum is under the care of a psychiatrist at the Memory Clinic, I feel much more confident that her illness is being taken seriously and that she's receiving appropriate medication and support. My main issue is that my dad - an immensely capable man who for years has been doing 'good works in the community' - cannot accept that now, he needs more help. After a recent crisis where Mum went walkabout (actually, busabout, if that's a word - it may be in the Dementia support community!) and was brought home by the police, he has finally given in to months of pleading by my brother and myself that he should engage with a home care/sitting service and arrange for Mum to have company when he goes out (he was also locking her in, which I've recently found out is illegal, though I totally understand why carers resort to this if they need to pop out, etc). My concern - and I've seen it expressed on this forum - is that he hates the thought of 'strangers' coming to the house and 'interfering' (he's happy for me to come and look after Mum while he goes off for short respite breaks, but I work and can't do this more than occasionally). Do people have helpful strategies for persuading stubborn care givers that it is no disgrace to ask for help and that Social Services don't want to judge or condemn but may be called in if there's another crisis? Any thoughts on this very welcome. Sorry this is such a long post - I've been feeling lonely, frustrated and guilty for so long and it's great to have discovered a 'tribe'!
 

stanleypj

Registered User
Dec 8, 2011
10,712
0
North West
Hi on a journey. Welcome to TP. What you describe is a common problem. It's good that your dad accepts the need for help from carers, even though he hates the idea. Maybe, if the carers who come in are good, he will realise what a big help they can be in taking some of the pressure off him.
 

On a journey

New member
Sep 13, 2018
6
0
Thank you for the kind message, stanleypj. It's been such a battle to get to this stage and I'm feeling more optimistic that his quality of life, as well as hers, will be improved once regular support is in place. Fingers crossed the carers will be good and he'll see that his negative thoughts about 'strangers in the home' will be groundless....
Ironically he's always believed additional support is 'very sensible' for any friend or relative whose lives have been affected by dementia.
It occurred to me yesterday that although I think I'm 'angry' with 'the system' (waiting lists to see psychiatrists, hospitals that discharge vulnerable patients without proper care plans, etc) what I'm really angry with is 'the illness/es' itself/themselves. I feel dementia has sabotaged my parents' lives and turned my kind and intelligent mum into an angry, illogical, sulky, angry and selfish stranger and my dad into a tired, sad and exasperated old man.
I know this isn't logical - Dementia isn't a person or an institution or a policy - but does anyone else identify with this, and how do you deal with it?
Thanks and hope everyone's day is as good as it can be.


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karaokePete

Registered User
Jul 23, 2017
6,568
0
N Ireland
Hello @On a journey, welcome to the forum from me too.

It may help your Dad to hear first hand reports from other carers. Around the country, the Society helps organise things like Memory Cafés where people with dementia and their carers can talk to others in a similar position and get some beneficial social interaction and information. You can do a post code check for what's available in your area if you follow this link https://www.alzheimers.org.uk/find-support-near-you
 

On a journey

New member
Sep 13, 2018
6
0
Thanks so much for this - very helpful. I will send my dad the link and hope he will be open to trying these options. At present, he's still trying to handle everything 'privately' but I am hoping he will reach out more and find support.