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
- @arpie, when I was on capecitabine I used Vaseline on my feet which seemed to help better than all the fancy creams, try not to let him go barefooted too often either. So good to see his markers on the way down.
- Thanks, @arpie. A great spot for it as any new Carers Corner group members will feel so much better about their lot.
Yes, it is a good one. - Already there! @June1952. ;) It’s good, isn’t it?
- @arpie. Can you pop that onto the Carers Corner private group as well ?
- This is a very honest description of what being a carer means .....
It is tough, and it will only get tougher - I used to only use Oatmeal flakes for Anzac Biscuits and Porridge but my pampered pooch has sensitive skin and has a sensitive skin shampoo and vet told us to soak oatmeal flakes in water and drain and then his becomes his conditioner. Much cheaper than the small bottle of conditioner for him at $25.00! I just have to be organized a bit before we decide it's bath day.
- Bloody 'autospell' creates STUPID COMMENTS!!!
She see to out oatmeal flakes in a stocking ...... should have been .....She used to use oatmeal flakes in a stocking - Have a sister with sensitive skin. Dermatologist told her to use Oatmeal soap.....she's much better!
- Many Thanks for that @Caz1 ... we’ve also dropped the Capecitabine from 6 a day to 4 and if the foot get worse towards the end of the 2 weeks, the Onc said that I can stop them a few days earlier. Weird that only one foot is affected tho! His hands are fine too!
Mind you, he’s had a toe nail fungus for years that no meds can cure unless he goes on the tablets, which can lead to liver failure, so it’s not worth the risk. :(. The cakey toe nails actually started 11 years ago with his original chemo!
I’ll try a pair of Scholl Dry Skin PediMask too (gel socks) .... they are only $7, so worth a try.
SO many choices in Dermaveen and Moogoo ...
Thinking back to a friend in the 80s who had a severe case of Pityriasis Polaris Rex (similar to psoriasis but worse) - 100% of her body was peeling (where she was shedding skin just walking across the room) ... she ended up in hospital and was covered in cream daily, wrapped in warm, wet lengths of cotton wool and then wrapped in plastic as a ‘fake skin’ .... it took months but eventually she came good. She see to out oatmeal flakes in a stocking and dunk it in the bath which made the water ‘slippery’ (instead of using soap.)
take care xx - Hello @arpie sorry I’m so late to reply. I’ve recently finished 6 months of Capecitabine and therefore, hopefully, my active treatment. Initially I was on 3 pills twice a day, a total of six a day, and after a few weeks I could hardly walk my feet were so sore. So my onco immediately stopped me taking it until my feet healed, and we dropped the dose back by one pill down to 5 a day. That fixed it for me. I used Moogoo exczema and psoriasis cream on my feet.
My hands eventually went dry and leathery too, they felt really really yucky and sometimes my palms felt like they were burning. Oh joy! I just moisturised multiple times a day with Dermaveen hand cream. Felt really nice and not too greasy.
Im so glad his bloods are looking much better. Well done both of You!
hugs
Caz xx
