Are you Caring for a Partner & Parents with Dementia/Alzheimers
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Thank you @Kiki_Dances60
It is always good to have additional resources as the odd tip here and there can be simple but surprisingly useful.
I am sorry to hear about your Mum, it is a terrible disease and having to watch your Mum fade away must be distressing. She is lucky to have daughters who are able to put resources in to help her stay at home.
All the best2 -
Many thanks for all that info, @Kiki_Dances60 - I will check them out!!
All the best for your Mum - as with BC, bloody dementia is an insidious disease.
And just not fair to have stage 4 cancer thrown in on top if it as well (with my hubby.)
take care xx2 -
It is easy for elders to get dehydrated as many have lost the ability to know if they need liquids or not. Best to prompt them to have regular fluid intake, even if it means to place a glass of water in front of them and prompt them to drink.1
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@arpie I wonder if dermeze would help for the foot peeling?0
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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!0 -
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 🤞🤞🍀🍀0
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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!
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From your mouth to God’s/ The Universe’s ears 🙏🏻🙏🏻🍀♥️0
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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.0 -
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 care0 -
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
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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.1 -
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!!
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