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arpie's avatar
arpie
Member
5 years ago

Are you Caring for a Partner & Parents with Dementia/Alzheimers

Just wondering how many of us are actively caring for partners or parents with dementia/alzheimers? 

If there are enough interested in doing so, we could ask the mods for our own group, to discuss the very real and personal issues that affect us, as their carers - and also how it is affecting/impacting our own recovery.

Tips & tricks on how to cope, would be really good - and just a secure, private area where we can vent or celebrate small wins.  For those who are incontinent, for example, apparently there is an 'Incontinent Nurse' at most local health facilities, that can arrange an Incontinence Care Package that is subsidised (at little or no cost to you) but you need a GP referral to kick it off.  'Cos the cost of pads & pull-up pants costs a HEAP - 'specially when going thru nearly a pack a night!  :(  Hubby has recently become totally 24/7 incontinent.  It is a life-changing event for both of us.  I haven't had a full night's sleep without 4-5 interruptions for weeks now.  He had an ultrasound on Friday & I should get the results tomorrow - and am hoping that something can be done to mitigate the severity of it all.  However, from the questions the radiographer asked, I am a bit concerned it won't be 'good'.  :(  

It is such an insidious disease -  I call it the 'living death' .....  you have to watch the person you love slowly change in both physical and mental abilities until they are almost unrecognisable.   There are funny times too ..... I never know what I am going to find in what cupboard, anywhere in the house!!  Stuff that should be in the fridge is in the cupboard & the cupboard things in the fridge ......  I found my electric toothbrush zipped in his Hearing Aid pack yesterday ..... 

SO .... Hubby (mid 80s) was diagnosed as Mod/Severe dementia 5 years ago (tho I'd been noticing silly decision making for some years prior to that) & is slowly getting worse.  His twin brother is further along than him (he stayed with us for 4 days 2 weeks ago & it was a bit like herding cats!)  Their older brother died from it in the USA some years ago, so it would appear to be genetic.  His mother died when he was a baby & his father was only in his 60s when he died from excess of booze & smokes, so we don't know if they 'would have' developed it .... 

I've recently signed him/us up to My Aged Care, but the bloke on the phone didn't think he needed assistance at this point in time (after asking him 3 simple questions, in particular that I would be speaking on his behalf, that just required 'yes' for an answer - and I was prompting him when to say it!)  Bloody DIPSTICK!

I am very interested in hearing the highs & lows of your own dementia carer journey .... and maybe we'll be able to help each other. xx

143 Replies

  • Yes, it is the heartache of watching a person's personality fade (or change entirely) as well as one's carefully planned future disappear.  My retirement plan of the big overseas trip to see places of my Grandparents' early lives in the UK has now faded.  People say "put him in respite" but is that fair to him ?  Also, knowing I was away doing that without him would not feel right - and not as much fun. 

    Dementia is thought of as an old person's disease but B-I-L was diagnosed at 62 and hubby displayed symptoms well before he was 70.  They are by far not the youngest, some people can be as young as 30.  Imagine having small children and a husband with dementia ?

    A friend has adult off-spring who come up from Melbourne to spend the day with Dad which allows Mum some time away from the home and the worries, time to rejuvenate a bit.  For those of us who were not able to have children it can be a very lonely life.  Friends cannot understand, are embarrassed (it could be them) and stay away (remind us of friends along the BC pathway ?).

    Having support and getting some tips from others on how to cope with the day to day issues would be fantastic.
  • Certainly sounds like it would beneficial to have a private group - can't imagine the angst of watching a loved one deteriorate slowly
  • Great idea @arpie.  A private group would be good as we do have specific issues and not always anyone around for support.  We are still 3 years into the stupid 'diagnosis' phase for my now 71 year old hubby. 

    Mother in law had Alzheimer's and 80 year old brother in law has some kind of dementia - he is in a nursing home as he no longer remembers how to walk or talk.  He was never given a specific diagnosis (there are over 100 dementias) as he had a brain injury when young anyway.

    Our biggest issue so far is the 'shadowing' and no initiative or decision-making capabilities.  As his memory is not too bad and he has done the tests so often he knows them and gets them right - ha ha.  He is useless with handling money or doing any measuring, lacks emotion, oh the mimicking (usually me, but that is how he gets by), no body temperature recognition, fixations, lack of cognition, sense of smell.  I am lucky in that he mimics me by following me into the shower so he is clean !

    I have found the supports out there are so text-book but there are no practical helps.