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 I’ve just started using Cetaphil as a body moisturiser. I like it. I apply it on my feet too. This is the Moogoo cream I use. I put it on my scalp, face and feet. I also have a little patch just under my eye that’s very dry, itchy and flaky. I put this cream on it and it helps. I’ll try it more often on my soles and let you know if it helps 👌🏻.
- @arpie the dermeze ointment is what i was given for my very bad radiation burns after sorbelene was useless. It was a very good ointment.
- When I looked up the ingredients for the ointment, it seems to be basically petrolium jelly...good old Vaseline. Heve you tried that yet, or the bum cream mothers put on babies' bottoms?
- Moogoo makes SO MANY creams tho! Which one are you finding the best, @FLClover? Hubby has a couple of bleeding cracks that I am keeping an eye on ... one between his toes! Being a diabetic, we’ve gotta be even more observant! :(
This is the one I am trying on top of the foot (using the Dermeze Treatment Ointment on the sole and heel just now.)
I’ve tried Cetaphil as well .... - I totally agree @arpie. This is why I usually just don’t buy if I’m not sure it’ll work. Or I’ll ask around first if I can. Cost adds up, it’s too much to give for nothing. I love sample packs. I hope this one works 🤞🤞.
I found a Moogoo cream that is specifically meant for the scalp, although it can be used other places too. I’ve had a dry and itchy scalp for years. Since treatment it’s become worse. I have spots that are actually bleeding. The Moogoo cream has really helped. The itchiness and flakes are almost gone. And has healed the bleeding parts too. I think I only used it on my soles once though. I think they’re a really good brand, so might be worth trying one of their creams 👌🏻.Only problem is for me they’re hard to find. - The chemist gave me a Dermeze sample pack - and the Treatment Ointment (far right) looks VERY promising! I used it on hubby’s foot last night and this morning .... it is greasy and sticks on well. The foot looked better this morning so have put another lot on. Each is only a small pack, but I reckon I’ll get 3-4 treatments out if it. A little goes a long way.
The little pack is a terrific way to try all the bits, before committing to buy a bigger bottle!
Cos it is costing a fortune to buy stuff and then find out it doesn’t work! Grrr
I wonder if Moogoo does the same? - Many thanks @wendy55, let’s hope so! He’s still got a lot of living to do ..
I’ve already bought a couple of pairs of white cotton gloves (in case he feels the cold as much as anything, as touch wood, his hands aren’t affected so far ... tho he was 11 years ago with his first chemo. He hasn’t worn them yet.
I’ll definitely check the gel infused socks! I got him a couple of pairs of slip ons, but he waddles like a duck in them and I am actually scared that he WILL fall over, so may hide them. I’m on a couple of stomach cancer groups but no one has mentioned the hand/foot issue yet! Weird!
thank you xxx - Hi again @arpie, I forgot to mention gel infused socks, just google the name you will see what I mean, they may help, also I used dermeze sensitive skin thick cream body moisturiser for sensitive skin its pretty thick but quite good, I also forgot to mention I wore white cotton gloves everyday I bought mine in the supermarket I used to have half a dozen pairs on the go and wash them after using to reuse again must be cotton though lovely and soft, I could not drive unless I was wearing mine, funny how things come back to you, I used to wear slippers, just slip on ones every day, though that may be a problem re a fall, you can buy special socks that grip the floor they were the ones I wore every day as well, its all coming back to me now!!! its been several years and several treatments ago that I was on the capecitabine, I also remember a support group which was part of the mets group in the USA as well, everyone shared there expereinces also think one in the UK as well,my hands and feet are still not 100% I do remember my hands being very very tight and having reduced movemnet in them which is why I could not peel veges and do some things on a day to day basis,but the drug worked and with you looking after him lets hope he gets 3 years out of it!!!
wendy55 - Thank you ladies ....I am just doing what everyone would do for their own loved one - and what your loved ones are doing for you xx
@PV123 - he has certainly done a lot more in his life than a lot of others, that is for sure! I reckon he should have qualified for the Special Olympics (amputated stomach) and he would have given a good shot at the triathlon! LOL
@Locksley - I am SO sorry to hear of your Dad's injury - at that age, it takes so much longer to recover & rehabilitate too :( I hope it doesn't put him off his fishing - but maybe no more negotiating riverside banks! :( Bugger! I'm glad his feet are coming good again xx
@wendy55 Well done for lasting 3 years on it! - it is a misery isn't it but so good in lowering the markers? Yes, I've been taking pics of his feet & sending them to the Onc so she is aware of the increased damage. She's just put us onto new ointment Eleuphrat Cream .05% (previously on Hydrozole 1%.) She says that any moisturising cream with Urea in it is better than just straight moisturiser (we'd tried Sorbelene too and other moisturisers.) The pharmacist gave me some sample Dermeeze so will try that as well. A couple of his 'splits' have started bleeding ... but he is still able to walk fine. Just gotta be careful that he wears shoes of some sort when outside - we can't afford for him to step on something & cut it & get an infection. His diabetes means he has a degree of neuropathy too - so doesn't always feel pain (which is some ways is good.) Luckily, one foot is OK and so are his hands. Yes, he was on 3 tablets am & pm - and now only on 2 am & pm - and it has made a huge difference. Terrific that you have a supportive partner too - I just look at it that we are a team .... I am even sneaking out for a fish now & then too!! ;)
@FLClover - I am so sorry that you've got the shit feet too .... The NS8 Heel Balm (for soles as well) was terrific initially (as was the NS21 for the top of the feet) but then the skin really 'caked up' and was thick & dry ..... shame we can't claim all the creams on our PBS list! :( It costs a small fortune to keep trying new ones!
Take care xx - Wonderful news about hubby @arpie!! 😃😃👏🏻👏🏻🥳🥳. So glad he’s doing well.Hope you find a solution for the feet soon. My soles aren’t red but they’re hardened and peeling and very painful to walk on, so I’ll be following replies on this 👌🏻
