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 @Cath62. Do make contact with Dementia Australia for support - they can provide a wealth of information re the 100+ dementias and supports available. They will also point you in the direction of groups, day centres etc in their area.
My hubby likes word puzzles (those find a word pages can keep him quiet for hours) and he does stretch his mind trying to think of words in the 9 letter word puzzles (the basic ones). Perhaps your Mum can be involved in simple crafts ? The day centre will give your Dad a break and give her outside stimulation, too. (My hubby did not want to attend one - he may in the future). All the best to you all. - Thanks @arpie. Good idea about group. I will look into it. I did thank my dad for looking after our mother. By the way I think you are amazing!
- So sorry to hear this, @Cath62 ... hopefully it is a slow moving version, so they can just plod along .... and I hope the meds help. I am lucky that hubby’s is slow moving - and he is not aggressive or nasty. Just confused and forgetful. He loves doing word search puzzles tho and jig saw puzzles. It can be ‘trying’ at times when they are having a bad day ..... but hopefully it is not every day. Your Dad sounds wonderful and I wish him the best xx. And you will be hovering too, help when needed. Maybe see if there is a dementia help group in their town/suburb? Having support from them may help you and your Dad too.
take care and all the best xx - God love your parents! Reminds me of my Dad. He looked after Mum to the end. Sounds like stress of lockdown, even though they have each other, wouldn't have helped!
Being aware and treatment started, fingers crossed there's a settling period. Not easy!
Take care - Just learnt my mum has early dementia. We have suspected it for awhile but really notice a decline in her during covid lockdown last year which coincided with my bc diagnosis. She has seen a geriatric specialist and started some memory support drink and other tablets. The specialist recommended crosswords and reading.
My mum lives with my dad. He is her carer. He will be 88 in November and my mum is 86 in December. They live in a retirement village in a unit. They have a cleaner. My dad does everything, washing cooking taking her to appointments etc. He likes the independence but I can see this is going to get very challenging. He says it's ok and they are fine for now and I guess they are.
When to step in....I will just have to keep an eye on it all. They don't have much money and are living off the aged pension. I guess it's one step at a time here. - From your mouth to God’s/ The Universe’s ears 🙏🏻🙏🏻🍀♥️
- I shouldn't really complain, @FLClover, as it only cost $50 & hopefully I'll get $40 back from IPTASS - and can even laugh about it now ..... but it was just so much harder than it 'should have been' ..... the kitchen & bathrooms had been recently renovated ...... just time for the rooms to be upgraded now too, I reckon!! ;)
Hoping for good results next week - and if the bloods shows the cancer markers are lower again with Monday's test or at least remaining stable - we also hope to lower the Capecitabine tablets next week to just one am & pm ... so hopefully the foot peeling will slow down too or better still, stops! ;)
Who knows? We may even try going OFF THEM altogether further down the line! ;) - Oh arpie, oh dear!! 🤦🏼♀️🤦🏼♀️🙁🙁. How horrible!! Ffs, that’s just disgusting! How can those places be so disorganised, considering the people who stay there?? 😠😠. So sorry you and hubby had to go through that. I hope at least the results are really good 🤞🤞🍀🍀
- OKAY! So Hubby had his PET scan on Monday .... in Newcastle. We had to be there by 10 so instead of driving down with an early start on Monday (about 7am) I decided we would spend the night there at one of the 'lodges' on the hospital grounds & then just walk to the Nuclear Medicine in the morning! I'd had a wonderful 4 weeks at the Port Macquarie Rotary Lodge during my 4 weeks of Radiation ..... so thought this would be similar! WRONG!
It took us nearly an hour just to FIND the place (lugging our gear with us everywhere) as the instructions/directions weren't really clear and even people working on site couldn't help us find it. Finally one person went with us from door to door (trying our key every time) only to find that the swipe card was for the front door & the key was for the room! I'd been told the opposite!
There are 2 'lodges' at Calvary Mater Hospital in Newcastle - the Telethon Lodge and the McCauley Centre Lodge. The Telethon Lodge is purpose built - the McCauley Lodge is the old Nurses Quarters! Both has a shared kitchen. The Telethon Lodge has nice rooms with ensures, TV etc ..... the McCauley Lodge has plastic covered mattresses and pillows, a wardrobe and a bedside table - and is on the 6th floor. That is it! And only 2 cotton blankets (in winter conditions!) so we wore long sleeved tops to bed, as well as tights and socks (no heating either - only in the corridors.) It is a shared bathroom too - where hubby got lost at 1am going to the loo as he couldn't remember where our room was, so I had to go hunting for him in the corridors to bring him back to bed! (It was very similar to my old boarding school! VERY basic rooms!) Luckily he found his own way back the 2nd time, as I slept thru that one! There is only one lift servicing the whole floor and there would be in excess of 30 rooms ...... and it broke down shortly after we got to our room! So there was a continual CLUNK CLUNK CLUNK as the doors tried to shut ..... and a monotonous voice saying 'Going Down', 'Going Down', 'Going Down' ... also ad nauseam! After 1/2hr, the alarm started - a loud continual high pitched droning noise ..... along with the CLUNK and 'Going Down'! And our room was RIGHT OPPOSITE IT!! It was driving us mad!! I'd rung the Lift Company at 4pm advising them of the breakdown & they said they'd contact reception & get a work order & come & fix it. I also rang reception to expect their call .... and they said they'd send a security guy up (not too sure what he would do tho!) But I DID ask him for another room tho, if they couldn't fix it before bed time! I am now calling it Fawlty Towers!
7pm and it is STILL going CLUNK, 'Going Down''Going Down', HUMMMMMMMM .... so i ring the Lift company again! They say it's the hospital's fault as they hadn't sent a work order thru until just now. A technician was on his way! (The reception had said they hadn't heard from the Lift company!) In the mean time, new residents had to lug all their gear up the way up all the stairs! The technician finally arrives and manages to turn all the noises off .... but the lift is still stuffed!!
The plastic beds creaked all night every time you turned over but luckily we'd brought our own pillows! Next morning, we found spare cotton blankets in the 'laundry' off the bathroom! grrr
So next morning we had to lug all our stuff down all the stairs, 68 of them, to get the stuff back to the car & then go on to Nuclear Medicine!
Hubby is a diabetic and had to go off his tablets as it can stuff the PET scan readings ..... so his bloods were 12! Same level as the PET scan in Jan. So we had to go walkies to try & lower the level to 9! 1hr later & it had jumped to 13! grrr Another 1/2hr walk & it came down to 11.1 .... and they went ahead with it anyway! Neither of us had eaten since 5.30 the previous evening & we were both starving! I was feeling ILL I was so hungry and nearly passed out (I thought it unfair to have breakfast when he couldn't!) So I grabbed some fruit salad from the cafeteria whilst they were preparing him for the scan and felt much better.
We were never so pleased to be back to our own home & bed that night!!! RANT OVER
We should get the results next week as our Onc is on a well earned 1 week off to celebrate her 40th birthday! - @arpie I wonder if dermeze would help for the foot peeling?
