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
- Dear @arpie
Thinking of you - this is a hard outcome and I hope you have support as you need it. Take care of yourself in all this. - Oh @arpie 😢. I don’t know what to say. I just want to give you a really big bear hug ♥️♥️♥️
- OK ... the tablets didn’t work and the urologist opened up for us on Xmas Eve and changed the meds to a patch called Oxytrol. What an AMAZING difference almost overnight. If your loved one has incontinence .... ask about this product! He still has the occasional leak, but no more 3-4 times a day and night but now wears pads and pull ups more as insurance .... I actually slept thru a couple of nights!
In early January, other things happened that resulted in a dual hernia diagnosis .... and he had an operation to effect a repair. Unfortunately the surgeon encountered problems and couldn’t complete the op without possibly causing damage to other organs due t what he could see in the abdomen, so he took samples for biopsy and closed him up. He was in hospital 4 days, recovering, and told all the nurses that I’d abandoned him there for no reason! LOL. His dementia was speaking!
A week later we saw the surgeon for his report and the biopsy and he said it was cancer. The report showed it was metastatic, from his earlier stomach cancer in 2010. He had most of his stomach removed back then from a particularly aggressive cancer, followed by chemo. It had returned, elsewhere. The surgeon organised a PET Scan for last Wed and today we got the results and report.
Advanced cancer in numerous sites. Surgery is not a consideration. I should hear from my Onc tomorrow for an urgent appointment to see what treatment options are available to him. Radiation is unlikely, as that targets specific tumours and I think he has too many.
The dementia also means he’s been almost blissfully unaware of everything and keeps forgetting his diagnosis ... which is almost good! He is not in pain or discomfort and I hope it stays that way - apparently this is not unusual for dementia sufferers! One of the few benefits of dementia. I have Plan B for pain control too, as I don’t want him doped up on opiates if pain DOES become an issue.
This really sucks. Covid stuffed our plans of travelling last year .... and now this. :(
Hug your partner and kids - and if you notice something ‘weird’ with your body .... don’t wait! Get it checked out. Even if nothing is found ‘then’, it becomes a part of the history and the Dr may remember that when someone else complains of the same thing! - @AllyJay this made me laugh. 28 years ago I said to my husband i will not be saying obey in wedding vows and haven't obeyed much of this time. He he.
- Thanks @Blossom1961 - it'll take 7 days for the meds to kick in before I can hopefully get a full nights sleep again - I just hope I haven't become 'set in my ways' and stay 'awake'! Sadly, the meds may also keep him awake too!! But if it helps regulate the incontinence, we'll work it out.
Hugs back at ya xx - My heart breaks for you lovelies. It is hard to look after yourself if you need to look after someone else, which is hard if you don't look after yourself. Vicious circle. I have to admit, I would be tempted to drug them up one night a week. I find if I get just one good nights sleep a week I can cope better. Please remember, you are important too. Sending massive hugs.
- Good luck @arpie... fingers and toes crossed for you
Here’s to many peaceful nights xx - Fingers crossed for a good night and some sleep @arpie
- I truly hope you have some improvement from the medication and I'm also pleased that the nurse is getting the paperwork sorted out to relieve some of your additional financial pressure. I joked with my husband that he should have read the small print about the "in sickness and in health" a bit more carefully as he takes such good care of me. He then added rather tartly that I should have noted the "obey" bit of the "love, honour and obey" portion of my vows. Cheeky bugger!!!
- Good luck @arpie!! 🤞🤞
