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
- Hi @arpie,
Such very good news for you and hubby after the harrowing last few months, I was on capecitabine for 36 months, it was hard but doable, my regime had to be changed and the dosage lowered after a 8 day stint in hospital due to toxicity but once that was sorted I managed, I did 12 days on 9 days off and 2 tabs morning and night instead of three, my feet and hands suffered quite badly, the skin peeled and they were very red angry and inflamed, I wore nothing on my feet except socks, lots of moisturizer didnt matter what brand, I used dermeeze in the bath it contained oatmeal and was quite soothing, they was no one real product that worked just a matter of keep trying, I found it quite difficult to walk at times and was not able to peel vegetables, however after all that, I kept going for almost three years, the drug certainly did its job and lowered my markers, it was just a matter of dealing with the side effects, I have photos of my hands and feet but I dont think people want to see them!! as you said if all is going okay and he is happy then onwards and upwards,you are one amazing lady arpie and I just know that your husband appreciates all you are doing for him, I am so happy that I too have a very supportive partner, with something like this its so important to have someone that supports you.Keep on keeping on.
wendy55 - @arpie that is wonderful news re Hubby. My Dad (early 70's) fell down a river bank on dry gum leaves on a fishing trip and broke his ankle in Feb. He has been in plaster and now moon boot since. His feet were angry red and peeling and Mum put on heel balm twice a day and now they are a nice looking pink colour.
- Good news @arpieI googled and read his story as well, so inspirational. He hasn’t let anything stop him from living a full life.You are an inspiration as well, helping him and so many others on this network with your informative posts.Glad to know his chemo regimen is working.Take care and look after yourself.
- Woohoo. Hubby’s markers are down heaps this week!! The first couple of blood tests had them going up 50-80 points a time .... first time they are lowering! The Lower dose tablets had him MUCH happier in himself and not as exhausted after his previous treatment.
His angry red, peeling Feet are still an issue tho
His next PET scan will be after next treatment now, not this one. He Didn’t put himself to bed at all after the last treatment and is bright and bushy tailed this morning. The Onc is very happy with his progress! So it looks like we’ve got the dose ‘right’ for his quality of life, yet hopefully containing the cancer.
He Started the oral chemo again today (for 2 weeks) after the infusion yesterday ... he had 4 days ‘off the tablets’ last treatment after the infusion .. so if he gets fatigued/zonked/not happy again, we’ll know to cut that back again.
I am just so very happy with how things are going just now.
Has anyone else had hand/feet syndrome from chemo, where the skin gets very red and inflamed, thickens and then peels (his whole sole of his foot has peeled, so now needs to toughen up again ...). We’ve tried various creams (NS21 was terrific initially on the skin and the NS8 Heel Balm was great for his heels and soles) and am now trying Moogoo full cream moisturiser ... but I am wondering what’s worked for you? This will be an ongoing problem with the Capecitabine tablets ... I may even start a new thread just on this subject as I am sure there will be plenty of members suffering from it!
take care, stay well xx - Hello @arpie and @June1952 great suggestions, I will need to ask our developers to add to the groups list. Hopefully be there very soon, cheers Giovanna
- Yes, absolutely - open to all carers, not just those with dementia - and also open to those who's loved ones may have passed away - as the knowledge you'll have gained will be invaluable to all of us facing that uphill climb. :(
- Good idea, @arpie
@Giovanna_BCNA - Also, can the title of the group be a bit more simple ?
Perhaps then an invitation on the main site for Carers to join.
Please note that the group is open to any member who is also a Carer - not necessarily caring for someone with Dementia.
Thanks - Is there a link we can add to the side bar (with the other groups) so that other members may be able to join, thanks @Giovanna_BCNA ? I'd like to start chatting with others in the group xx
- Any members who are also carers are encouraged to join the new group. I just joined. Look forward to some interesting discussions to help us all get through. I was speaking with ladies yesterday who care for grandchildren - one with Asperger's and the other Downs Syndrome. We all have similar issues at some time or other and it is good to find out new leads, treatments, practical solutions etc.
Thank you @arpie and @Giovanna_BCNA for starting the private group. - Many thanks to @Giovanna_BCNA for kick starting a new group for Carers with Chronic diseases ..... you should have received an email about joining the group if you’re in this situation or would like to follow it. Xx
