Forum Discussion
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
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
- I Didn’t know they existed, @AllyJay! Will look into them, thank you. I HAVE been using the female Maxi pads during the day quite effectively as they are more like the male shape pads and bigger too .... I am trying to get him into a ‘routine’, of going before and after meals and before bed so there is less ‘buildup’ that makes it urgent at times .... but as the saying goes ... you can lead a horse to water ....
- Have you tried putting a maternity sized pad into the pull ups for nighttime? This might do the trick. Big hugs arpie ((()))
- I've been in touch with 4 different suppliers of incontinence gear & they are all sending free sample packs .... TENA allows 3 free packs a month! That is VERY generous of them! I'm mainly grabbing Pull-Up Pants as they are the more expensive. There are a few different styles throughout the different brands, so getting a bit of a selection and see which ones work best.
Hubby's thighs have shrunk since he's stopped training as much & the 'regular' pull-ups & pants aren't as 'waterproof' as they think they are ... but we've had 2 leak free nights now, so that may indicate that the stuff-ups over the weekend may have been because he was out of his normal routine & away from his familiar home surrounds. - Just bringing this post forward for anyone who has not been on-line to see it.
- @June1952 Mum didn't need diagnosis for access to the Day program.... just so you know
Yes the what ifs are horrible.
Arpie to Smithton near Stanley let me know if and when you are travelling great Caravan Park at both places. - WOW!! Exciting times ahead for you @SoldierCrab - whereabouts in Tassie will you relocate? I love Tassie (mainly for it's fishing! LOL) When I/we are able, I want to go down for a good month or more in my campervan & just travel around, fishing. This will depend on Hubby's health ..... I have friends in Launceston & a nephew & friend in Hobart.
- Thank you very much @SoldierCrab. There are many services available, some work and some don't. I know there are respite services but to date hubby has refused that due to privacy. He says he gets scared if he cannot see me - yep, he follows me to the loo, along with the dog and cats !
As we are still playing the waiting game for an official diagnosis (he does not fall right into the correct phases of some of the dementias so we are on hold for another 12 months pending some distinct deterioration) and he knows all their tests off by heart we are between the cracks for services. Three years is the 'normal' timeline for a diagnosis. As he hated one doctor he refused to go back so we then had to start the process all over again.
Like @arpie I get frustrated but try to see the funny things at times.
As I am waiting for my annual mammograms and ultrasound (they are booked up due to COVID) I am now in the scanxiety state and this is made worse by thinking the 'what ifs' - how do I now deal with him if I needed treatment ? Oh dear.
Thank you, too, to @jennyss and @Locksley for your kind thoughts. - 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 - 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
