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
- OK .... we Got in to see urologist nice & early Today - he took us straight in! Lovely chap. He was happy with Hubby's flow. Now Getting ct scan of prostate kidney and bladder to rule out anything sinister. Will be starting tablets tonight. It May increase dementia effects and affect his blood pressure (he's gotta be careful getting up not too fast) but should decrease urine flow. Will trial it for 6 weeks and monitor side effects. There is another one we can try if this one doesn’t suit.
The practice Incontinence nurse will fill in form for CAPS funding towards cost of pads/pants.
Can't wait to have a full night sleep again... it’s been 6 weeks of 4+ nightly interruptions! It is Making me cranky!! I don't like being cranky!! It is not his fault.
Fingers crossed this works. The tablets Take a week to take effect Xx - Dear @Arpie,
I'm very pleased that a urologist appointment has been brought forward. Hope you get some definite and helpful info from that appointment and other tests. And back to home life - yes, routine can be very important. - Good news @arpie - hopefully the urologist will be empathetic to your needs as well and move things along quickly in regards to tests and treatment.
Hope hubby travels well for you.
Good luck with the brain scan results. <3 - Pleased to hear about the appointment @arpie
Oh it's a worry when health and well being has changed and the root cause and understanding of it all is a little scant
Hope the tests give results that help with diagnosis
Take care
Hugs x - Woohoo! We have an appt with a urologist at Port Macquarie on Friday! Fingers crossed we can get answers and solutions to the incontinence.
Should get the results from the Brain scan today or tomorrow too.
A Small win - but a wonderful one. - @Caz1 - I am so sorry to hear of your Mum and Dad’s story xx ... yes, hubby is also depressed, listless and not happy. He is keen to downsize the house, but given how he reacted to just 3 days away from his trusty ‘routine’ .... I don’t think he would cope with everything that a move entails, let alone getting used to a new house/routine - and to be honest, me neither.
@jennyss - I am so sorry for your loss. It is so hard. Xx
@June1952 - hubby is only on 3 meds, cholesterol, diabetes (which is not stable just now :( ) and capsules for his eyes (he is virtually blind in his left eye with wet macular and receives injections into it every 4-6 weeks. A small win ... I asked the eye specialist if the injections could be ‘no gap’ as it is never going to stop (otherwise $100+ each time) and he said yes!! We only pay extra now for the eye scans, which is every 2/3rd visit. It pays to ask .... they can only say ‘yay or nay’.
So ... Hubby’s 2nd urine sample came back negative to infection, so THAT isn’t causing the incontinence .... in a funny way I was hoping it would be positive to see if a different lot of ABs may have ‘fixed it’.
The GP then suggested a CT brain scan to make sure there is no underlying neurological problem causing it. They took him in immediately amazed me, as usually there is a 2-4 week wait! I think the word ‘encephalitis’ in the referral made a difference! I should get the results next week.
I am VERY disappointed that the GP won’t mark the urologist referral as ‘urgent’ as it has been 4 weeks + now since the incontinence started ‘out of the blue’ .... BANG! Suddenly it was full on!
The thought of another 4 months before an appointment is just unacceptable. It is affecting both of us - mentally and physically ... and we can’t access Gov assistance re cost until he deems it ‘bad enough’ to warrant. He is not enjoying life right now. :(
i guess i have to wait til Mon to see if we get the appointment then take it from there .. they said they would ring me. - @jennyss hello :)
Wow, that must have been so hard you poor love :( I’m so sorry for your loss.
I guess it was a blessing that your mum went quickly and didn’t have to suffer too much.
Caz xx - Dear @Caz1,
Thank you for your heartfelt post. I can feel those emotions strongly. My darling mother, aged 90, was developing alzheimer's over a number of years, but a stroke carried her off first a couple of years ago - While I was incapacitated by chemo - lol!
Best wishes from jennyss in Western NSW - @June1952 pleased that our experience can help someone.
Sounds like you’re all over the info, good on you. It felt like we were walking into a blizzard and were blinded by it! Any info is good.... - Hi @Caz1
Yes, unfortunately any falls or changes of location upset the status quo.
We had a specialist pharmacist look at the range of medications of a family member and that was simplified, making things much better for him. So many medications work against each other and the doctors cannot know it all, they are going by what the chemical companies teach them.
The type of dementia my partner has does not have any suitable medication to assist but I am lucky in that he has only 2 which don't impact upon each other. If he is given a prescription I read up on it before even going to the pharmacy ! Taking no chances.
@arpie is amazing. I don't know how she copes so well with this stage in her partner's road of hell. So much added work.
Thanks for your explanation of your experiences. Forewarned is forearmed.
