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
- So sorry about the AZ side effect but WOOHOO ON THE JOB!!! Well done!! Yes, Tassie is gorgeous. You can expect a visitor if/when I ever get back there... with my kayak! ;)
I’ll be be keeping an eye on him for sure and we have an epipen on hand in case of allergic reactions!
Enjoy the tail end of your ‘holidays’ :) take care xx - Sounds like your team has a good plan going forward Arpie for him. Take care I have had my first Astra Zeneca also wiped me out for about a week. but good now GOT a Job woo hoo and start in 2 weeks new life with new job and loving it here in Tassie
- Hubby had his bloods done Mon & chemo on Wed. His bloods came back slightly ‘elevated’ - but one of the cancer markers is still in the NORMAL range & the other one only went up 10 points so the Onc, seeing Keith’s actual disposition, is not too concerned about the rise. (He was going up 60 points a session in the early days of diagnosis before the tide turned ..)
I have to be realistic that sooner or later, that they will start going up again .. so just hoping we can stabilise them and keep them steady .. Fingers crossed.
We had cut back one of the evening Capecitabine tablets 2 sessions ago, so we’re going back to the 2 tablets morning & night for the 10 days that he is on them, following the chemo … and if the markers go up again, we’ll then go back to the 14 days of tablets not the 10. So we have a couple of options to explore, even tho it will stuff up his foot again with the peeling. Pawpaw ointment has been helping with the peeling!She has also said that he can have the Astra Zeneca covid vaccine too - so I’ve arranged that now for Sat. His White Blood cell count is perfect, so no risk re his immune system - just gotta watch for any possible allergic reaction & the chills. One of my other buddies with Stage 4 Breast Cancer had hers last week, too & she didn't have a problem with it. I had mine a few weeks ato (1st one) & my 2nd isn’t until Sept now. I hope you’ve had yours if you are able to ...
He is going well in himself - puts himself to bed a couple of times a day for a kip .... and has actually put on a couple of kilos body weight ... so that is good! The air fryer is paying for itself! It does GORGEOUS fresh potato wedges .... I dare not weigh myself!
take care, have a good weekend xx - Glad things are going ok with his meds @arpie. Jigsaw puzzles see me through the bad head space days.
- I’ve got a few up my sleeve @June1952 .... I think one of them is a Ravensburger, @iserbrown! They are good quality.
He loves Word Search too, and is good at it too, so I’ve bought a few books for him and he gets a big one out of the Sunday Paper every week too ....
His foot is looking MUCH better .. very little peeling - and he’s been less ‘tired’ following this latest treatment. He finishes the oral chemo tomorrow and has bloods taken next Mon and we see the Onc and next treatment next Wed. - I was recently introduced to Ravensburger Jigsaw puzzles
"Buy Ravensburger Jigsaw Puzzles Online - Australia" https://www.jigsawstore.com.au/brand/ravensburger/ - That is amazing ! He must still have good eyesight and a steady hand to go along with more patience than I have !!!
Off to buy him another one ? - That’s a gorgeous puzzle @arpie 😍. Good on hubby! 👏🏻
- Although the pet scan showed ‘new activity’ in the abdomen, colon and near the kidneys, the Onc was actually quite happy with it, as Signet Ring adenocarcinoma is a bit like ILC (in a way) ... in that it doesn’t ‘present’ as a lump - it is very insidious and aggressive, presenting more like a spidery web ... so it doesn’t alway ‘show up well’ in scans, MRIs etc, Hubby’s Cancer markers are still falling, is eating well, is not in pain or discomfort .... so we are really happy with that. We’ve reduced the Capecitabine tablets again, by one - and his foot is already looking a lot better! Not peeling so much. We’ve also adjusted his Health Care Plan so he now gets more Podiatrist appointments instead of physio, as being a diabetic with neuropathy as well ... we have to be really careful of foot injuries ...
After Xmas, before he was diagnosed, he started a jigsaw puzzle - it was a beautie! ... his brother and nephew helped with a few bits on the last 2 visits ... and he would sit there for hours, moving just a couple of pieces! It was a big 1000 piece one, and all in shades of grey, so really tricky - and he finished it the other day, with no missing bits! Particularly as I’d found pieces on the floor, in the kitchen, lounge and dining rooms - and he found a piece in his slipper once! I would never have the patience to do this!! - Many thanks @June1952. Great advice
