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 just googled him too. Wow!! So many achievements, and such perseverance throughout his life. Incredible! He and his brother look so happy after having competed, and might I say you two make a very handsome couple ☺️😍♥️. Lovely to read about his story and both of your determination 🥰
- That’s great @arpie!! Wow, a championship at age 80!! That’s quite inspiring! 👏🏻👏🏻.
Sounds like both of you are quite tough 💪🏻👌🏻♥️ - Wow sounds like you got yourself a fighter!
Glad you can duck out for a fish now and then
Caz x - Thanks guys - it's just what ya gotta do. You would do the same for your loved one.
He would be cactus trying to do all this on his own.
At our first meeting with our Onc for hubby, I gave her a list of his achievements as a top triathlete (including winning Triathlon World Championships just 4 years ago at age 80.) I also gave a brief history of his running career over the last 65 years, representing the 4 countries that he's lived in (before he took up Triathlon & represented 2 countries!)
This was so she didn't just look at him just as an 'old man' who "wasn't worth salvaging" or working hard for. His condition is also very rare - she's never seen another man presenting with his type of cancer (Diffuse Signet Ring adenocarcinoma) and the spread that he has - so she is trying even harder to make a difference - as it may also help her in treating someone else further down the track.
She then googled him and was in awe of all his achievements - and is being very proactive in his treatment .... He's been interviewed & documented by the ABC, a live interview on one of the Sports Radio Stations, written up in the Seniors Magazine, had articles in our local rag numerous times and was the 'feature story' in our newest Town Rag (as all the other papers stopped printing, so a triathlon buddy started her own local paper instead!)
Many thanks for all the hugs - I am going 'ok' - we are not at the stage where we need in house help or anything ..... and I can still duck out for a fish now & then & leave him on his own for a few hours - tho will be monitoring him closely over the next week to see how he goes after the chemo. In 2010, he used to get very weary at about Day 4 & put himself to bed for a couple of days ..... but this was just a 40% dose to see how he goes first up .... next one may be stronger, depending on how he goes.
If anyone asks him 'how are you'? He just replies "I'm FINE!" Tho the other day mentioned to me that apparently he had some sort of disease ..... so I just said, "Well you're doing OK just now, so keep doing what you are doing!" xx - Dear @arpie,
Best wishes from jennyss in Western NSW - Good on you @arpie , what a great advocate you are :)
- You’re so onto it @arpie, good on you!! What a wonderful wife and best friend you are to him 😊♥️. I hope you get the treatment you need at a much reduced cost, and that it helps 🤞🤞. Quite annoying that so many of them are not available here in Aus, but there’s not much we can do about it. You’re being very proactive anyway 👌🏻. Hope you’re taking care of yourself too 💟
- What a roller coaster!
Sending you a virtual hug x - Thanks guys. OK .... Hubby had the first 2 weeks of oral chemo tablets and didn't have too many side effects, then a week off - tho his feet/ankles have swollen up a fair bit - no nausea, ulcers, diarrhoea or pain ..... He HAS been very tired/weary so putting himself to bed most days for a nap. His cancer markers have increased a fair bit but the Onc says not to worry about that.
Sadly, his MSI and PDL1 markers are too low - so he is not a candidate for Immunotherapy :( I was keen to try it anyway, but the Onc (rightfully said) that it IS still a 'toxic treatment' and not to be taken lightly. The Next Generation Sequencing in the USA sadly didn't identify many treatments that would work on his mutations as they are not available in Aust ..... tho one may be useful but is not currently available for Gastric Cancer thru PBS, only for other cancers. Happy to pay for it if we have to - and may be able to get a reduction of cost thru compassionate grounds.
Today he had his first dose of 40% chemo infusion (to start off with) & restarts the tablets tomorrow. It took forever for the infusion to 'go thru' as he started feeling itchy early on (as an anaphylactic, that can indicate an allergic reaction.) So the treatment was stalled as they waited to see if it developed or not...... Then he had major foot cramping, so stalled again to allow that to 'pass' ..... so a long day at the office.
Our Onc is getting used to my printed list of questions re his treatment at each appt - and is actually quite impressed that I am researching stuff from UK & USA (and HAVE questions) as there are way more treatments than available in Aust. Apparently some people just sit there & nod. (Tho she is MUCH more approachable than his original Onc in 2010 who had the personality of a gnat!)
His twin brother & son are coming up again on Fri for a few days of hopefully quality time together ... - Sending positive thoughts,vibes ,prayers your way xx
