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
- Hang in there @arpie
- Dear @arpie,
Go and catch some fishes - I hope the oral chemo is effective @arpie 🤞🤞. I’m glad he’s not in pain, at the least. Also great he got to spend some time with his brother and nephew.What a tough situation to be in. Let me know if you need a chat ♥️
- Thanks @Blossom1961 ... will keep an eye out for that if we go down that road xx take care xx
- Hi @arpie If hubby goes on Keytruda, watch out for loss of voice. If his body rejects it then that is a side effect. My FIL was doing really well on it for over six weeks until his body rejected it. He couldn't talk for months even though they took him off it straight away. Then again, that may be a blessing.
- Hubby has started oral chemo this week - if he tolerates that OK without big side effects, they may add a weak solution of Oxplatin to the next session in Mid March. If the tablets DO affect him, we will drop the dose & not do the Oxyplatin.
We are still waiting for results on the sequencing - won't get them for another 3 weeks at least. I am feeling better in myself now that treatment has started. We had his twin brother visit last week with our nephew & they both enjoyed that. He has dementia too - so it was a bit like herding cats when we were out & about!
Damn! He is Her-, so can't go on Herceptin or Avastin. For the immunotherapy drug Keytruda to be 'on the table' he needs both MSI and PDL1 levels to be HIGH! But his MSI is low :( .... so now waiting for the PDL1 results which aren't covered by Medicare, so costing $250 to be done, but well worth it. Keytruda isn't covered by PBS for Gastric cancer yet (it is for Lung & Melanoma tho.)
He is still 'fine' in himself - feeling no pain (which is amazing all the medicos) - it is his dementia that is blocking the pain signals, so at least there is ONE bonus to having dementia! Oh - and he's already forgotten the diagnosis, so that is the other bonus of dementia.
Last night Q&A on the ABC covered a lot of dementia issues - particularly in aged care centres - but the last question about the right to choose your Own End of Life options brought many to tears.
Check it out on iView. It also covers the current Parliament House rape issue - so skip to half way if you don’t want to see that bit .
https://www.abc.net.au/news/2021-02-26/dementia-patient-leaves-q+a-panel-on-aged-care-in-tears/13194334?utm_medium=social&utm_content=sf243409790&utm_campaign=abc_australia&utm_source=m.facebook.com&sf243409790=1&fbclid=IwAR0dOf7N08WmXM5AkD5pW9sTB7jBSjsEnsrMOLxwfg1KrybU6UMUfzoLukc - Thanks for the support, guys ... it is a rough road ahead. I feel a lot better now, having seen the Onc and the beginning of a plan forming ...
So ... we Saw my BC Onc yesterday (now hubby’s Onc too.) We are getting the tumours ‘sequenced’ to find the best treatment for it, as it is a rare one - it costs, but will be worth it. They are comparing the old pathology slides to the new ones to see if any variation has occurred ... Also getting checked for Her2, as Herceptin May help if positive! Otherwise it will most likely be low dose chemo/TABs to try and slow it, but maintain quality of life and pain free.
Xx - Dear @arpie,
nothing more that I can say that hasnt been said, I am just so very very sorry, that you and your husband have to go through this, please know that all of your friends on this forum are thinking of you both,
Love from
wendy55 - @arpie my friend, I’m so sorry that this has happened. What to say.......I’m thinking of you both, take care lovely :'(
sending hugs and positive vibes your way
Caz x - Dear @arpie I am so sorry to hear of this. Sending you big hugs. Xxx
