Home Now what? The highs and lows of survivorship



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

arpiearpie Mid North Coast, NSWMember Posts: 4,618
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
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Comments

  • June1952June1952 Member Posts: 1,034
    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.
  • iserbrowniserbrown Regional VictoriaMember Posts: 4,497
    Certainly sounds like it would beneficial to have a private group - can't imagine the angst of watching a loved one deteriorate slowly
  • June1952June1952 Member Posts: 1,034
    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.
  • arpiearpie Mid North Coast, NSWMember Posts: 4,618
    edited November 2020
    Absolutely - it has stuffed up our plans too - specially now with the incontinence issue - wouldn't like that to happen in our campervan ..... I've bought waterproof fitted sheets for the house, the camper & a spare set to take with us when we visit others (like this weekend away) with lots of towels and a yoga mat to put under the towel to make absolutely sure nothing will leak thru to the sheets & mattress ..... and that is whilst wearing pads/pull-ups that are supposed to be leak proof!  NOT!

    I can't even imagine how I got him to Mexico & back 4 years ago (with his twin brother) to compete in the Triathlon World Champs!  He'd already been diagnosed as 'early stage' about 5 years before.  No way could they travel on their own ....  tho I know his brother still likes to think he will ......

    It is more than just being 'forgetful' - it is picking up on 'questionable decision making' which, in hindsight, started a good 10 years+ ago .....  picking up on repetitive comments, the same story being told time & time again - all these things can indicate early onset dementia. 

    There IS some medication that may regress the speed of development but sadly, hubby has a heart murmur & is unable to take it.  

    The '20 questions' (usually the same question) gets a bit tedious even now, but they are not doing it on purpose.  Every day, he asks "Are we still in lockdown?"  So now I just say 'yes' - it is easier.

    We've just been away for the weekend with 5 other couples (really good triathlon buddies who he trained up to Ironman) & I think they were really surprised at the deterioration even since our last group outing together in May.  All week, he couldn't remember where we were going, with whom - but luckily recognised most when we got there. But he was terribly 'restless' all weekend as he was out of his normal routine and this showed itself in his incontinence issues. 

    He is also getting very frail & whereas ten years ago, he used to compete in Ironman and Half Ironman, now he often stumbles when just walking down the street or even in the house.  He over balances when getting up from a seated position .....   He tripped on the weekend whilst walking to town for dinner - luckily I was holding his arm, so prevented him going down face first, tho he still ended up on the pavement, I was able to slow it & my buddies tried to grab him as well to break the fall - no injury, thank goodness.  

    He can't use his iPad or mobile phone any more - he just can't remember what to do!  I have a heap of notes written all over the house, to remind him of things ..... his brother's phone number (and mine,) Drs appointments etc 

    He is no longer driving or riding his bike on the road - it was just too dangerous to others.  So I have to plan my day to drop him at the swimming pool, do a 1hr shop & pick him up ..... 

    My girlfriend's dad was diagnosed in his 50s.  He went from being a highly organised sheep/wheat farmer - to being tied in a 'child harness' when his wife had to take him shopping with her as she couldn't leave him alone on the farm.  It was just horrible to watch the slow decline & can only imagine how hard it was for his wife.

    Agreed @June1952 - it is a bit like BC - until you've been thru it yourself, you really have no idea.   

    I only learned about the incontinence nurse tip yesterday - so if anyone has ANY tips about ANYTHING from looking after a friend or family member - please whack 'em here.  

    Being thankful for small mercies - I am just so lucky that he isn't aggressive or 'suggestive'.  Many lose all sense of propriety/inhibition & are known to make inappropriate comments & suggestions to members of the opposite sex (or same sex if so inclined) .... or they wander off and you have to call the police to find them!  :(  

    At this point in time, I can still duck out for a few hours of 'me time' so I can go fishing or to Ukulele - but I don't know how much longer for!  Every day could be my last day .... 
  • June1952June1952 Member Posts: 1,034
    Mine is not so bad after all !
    He does chat up ladies in any queues he happens to be in - to the extent that I phone him and when he gets his phone out I put mine away all innocent - by then it has broken his concentration.  I let him go and pay at the pub for example but ... !  If there is something wrong, like they are out of the chosen meal, he cannot work that out at all.
    He is no longer driving but is steady on his feet so I am again lucky there.
    He does open his phone but unless it is me he does not know what to do and gets angry.  He does not make calls at all.
    He was aggressive earlier in the year but now I see the signs and know when to depart.  By the time I return he has forgotten.
    Like you, there are 'reminder' notes all over the house - they work sometimes.
    The specialist said that as he does not have Alzheimers he cannot be given the medication and it sometimes does not work anyway.  His story ?  He will not take their medication ... that is not what was said.  Just as well I was there. The specialist like their paper tests to do the diagnosis, they take no notice of the person who is the carer so lives with the problems daily.
    All in a days work ......
    I try and see the funny side of things .....
  • ddonddon Member Posts: 346
    Ladies, these stories hurt my heart. You have so much to deal with from day to day as well as the grief involved in losing the one you love in increments. Xx
  • FLCloverFLClover Sydney Member Posts: 933
    Wow @arpie, that sounds very hard 😕. On top of the whole bc. Geez, it’s like you can’t catch a break. My great uncle had dementia. It’s terrible seeing it happen like that. I feel for you all. And I really hope you get your private group cos sounds like could be very helpful 🤞
  • BlackWidowBlackWidow Lake GardensMember Posts: 213
    @arpie, your story saddens me as it seems your partner's condition is more advanced than that of my friend's partner - and I see regularly what she is going through.  My hubby passed away suddenly but now I am so glad that I did not have to see him suffer and disappear like that.   @June1952, I am in awe as to how you cope on a daily basis.  As the years go by and scanxiety rears its head once again my thoughts drift to what would happen if the worst happened.  Could your men cope with you once again being diagnosed and missing as the doctors worked more magic ?  Life is cruel.  I think of you both and have you in my prayers.  Anne
  • jennyssjennyss Western NSWMember Posts: 1,084
    Dear @arpie and @June1952,
    I'm not very good with words on such important issues, so I'll just say

    Love and best wishes from jennyss in Western NSW
  • LocksleyLocksley Macedon Ranges, VictoriaMember Posts: 430
    @arpie @June1952 I'm also thinking of you both.

    I watched my Grandma change so much with her dementia diagnoses. She had Sundowners and it truely had a change in her when the sun went down.    She was also very clever in doing the tests and remembering them.   She was also good at saying one word answers Yes.... in the correct places.  I worked in aged care and was pressing my Mum and Auntie to ask more questions of the specialists because family members get very good at tricking them.   Grandma was hiding food all over the house as she would remember the depression when she was young and kept telling us over and over again we needed to be careful with food.   She would focus on the scrap bucket for the chooks and get angry we were throwing out good food.     

    Now I am seeing some small same symptoms in my Mum.    She is refusing to see any of this.   The telling of the same story over and over again nearly kills me sometimes.     I've said to my Dad after 5 times the same story gets a bit hard to take.   I've started putting Mums phone calls on speaker phone so hubby and daughter can hear the plans she is making as a back up to me.  eg.   Dads birthday when we are catching up and who is bringing what.   We call in at arranged time and Mum says no we didnt make these plans.    She gets a bit angry and I'm always wrong.   

    Sending hugs xxxx

  • SoldierCrabSoldierCrab Bathurst NSW Member Posts: 3,323
    HI Ladies 
    My Mum has dementia  she is 80 
    we tried the meds no help 
    she got sick during shutdown in April and we nearly lost her to skin infection 
    I had been checking in daily to her and she kept going out to shops even with lockdown. 
    due to her non compliance she was put under public guardianship for accommodation and now lives in a brand new care facility that is for various levels of people needing care it is a lock down facility on the outside but freedom within..
    She goes downstairs in the lift to the Cafe and tells me she went to the RSL I panicked the first time she told me but now know she is safe inside just having a coffee at the Cafe inside and thinking she is at the RSL.
    Between caring for 2 boys with Autism and mum I was exhausted. 
    I had mum attending a day program 

    Do you have access to those in your area ? 
    Day programs


    IN NSW we have Carers help line do you know about that ? 
    contacts regarding supports for carers should be made to the Carers Gateway on 1800 422 737
    Dementia Australia National Dementia Hotline 1800 100 500

    are you struggling yourself 
    Lifeline 1300 798 258
    Beyond Blue 1300 224 636
    Blue Knot 1300 657 380
    MindSpot Clinic 1800 61 44 34
    Careline 1800 231 118

    Do you know about the TOP 5 information ?   I have added the file  here. 

    do you know about the Next of Kin Program 
    Next Of Kin Program The Next of Kin Program helps people living alone to have the contact details of their nominated person recorded at a local police station as well as the nominated doctor, dentist and any medical alerts that would help in an emergency situation. These details will be entered onto a register and will be securely stored and only accessed by NSW Police. This information may assist the police and emergency services to contact a relative or other nominated person if needed in an emergency situation.

    I have put a file emergency care plan here also 



  • arpiearpie Mid North Coast, NSWMember Posts: 4,618
    So Sorry to hear that, @Locksley .... yes, they get very frustrated (and frustrating) .... your Mum needs to be assessed by a Geriatrician and the sooner the better - and probably a good idea if you can go with her.  They ask the same questions every year & gauge by the answers, the progression of the disease.  Simple stuff like the time, what day is it, who's the Prime Minister (well that one's been tricky over the last 5+ years .....)   We see the geriatrician again in Feb.

    If she CAN be put on that medication it may help.  Good idea to share the phone calls so everyone knows the confusion ..... maybe even record them & play them back to your Dad when you think he is ready to hear, hard tho that will be.  Do you have other siblings who can come in on the conversation as well, and help support you?  

    I don't have kids (tho I have 2 step children in NZ - hubby's first wife's children.)  We live rural, so don't have any close family nearby (closest is either Sydney or Qld.)  2 of our good friends who've always said they'll help, have sadly  moved away .... so I am very fearful of what would happen if something happens to me.  He couldn't look after himself at all.  (Which is why I signed him up to My Aged Care - but they don't seem to think there is an issue yet ...... AS IF!)

    Take care, xxx
  • arpiearpie Mid North Coast, NSWMember Posts: 4,618
    edited November 2020
    WOW!  @SoldierCrab - that facility sounds FANTASTIC!  That is in Bathurst, so not far from you?  Brilliant.  Was that arranged thru Aged Care?

    Being diabetic as well, I am VERY aware of hubby's problems with infections .... you were lucky she got thru OK.  Another dementia thing is the 'picking of sores' - hubby continually picks at them til they bleed (all over his clothes & bedding) and they are turning into keloid scars - thick & raised & he still picks the scabs off.  :(  He doesn't even realise he is doing it and gets stroppy when I tell him to stop. 

    OMG that would have been a HUGE worry during lockdown, specially having to go into care!!  They are very much creatures of habit (I think it was being away from home that triggered the big leaks over the weekend with hubby's incontinence.)  Now he is back home, he is settling down again.  He wants us to pack up & move to a smaller house, but I think that would confuse him even more, so I am trying to avoid that conversation .... 

    Yes, it is exhausting isn't it?  The lack of sleep in recent weeks is taking it's toll (re the incontinence.)  I only woke up 2 last night - the best sleep I've had in ages!

    Thank you so much for those contact numbers - I am sure @June1952 will find them handy as well!   I will get onto them asap.  NONE of these things have been mentioned to me, as his carer.  :(

    Take care & thank you again xx



  • SoldierCrabSoldierCrab Bathurst NSW Member Posts: 3,323
    Ladies check with your local council  or hospital about Day programs.
    We have a program here in town regional that is a visitor comes and sits with person while carer has some one on one down time be it appointments without the person, shopping  or coffee with friends etc. 

    you need to look after yourselves 
     Yes Arpie it is in town but I am about to relocate to Tassie to my partner 
    Now I know mum is safe my adult children will visit her and see her when covid allows etc. 
    I will video call her 

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