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
- Fingers crossed for you @arpie about that appointment.
I feel I could write a book about our experience. Dad and mum were so in love, they were like teenagers. He was so reliant on her, he was like a puppy dog. But mum wouldn’t have had it any other way. Mum just got tireder and tireder. Turned out she had a heart problem, so at age 85 had a major surgery to replace 2 valves. My dad went to stay with my brother, and while he was there fell over and broke his leg. Up till then he was functioning pretty well at home, eating, helping around the house etc . Happy as Larry.
The fall accelerated everything. Apparently trauma causes the brain to deteriorate even further, so it was a hellish couple of weeks in hospital trying to keep him still ( impossible) then into respite, then he deteriorated so quickly into permanent care. He was drugged to the eyeballs. Turns out the combo of drugs he was on made him aggressive. It was horrible. My dear old dad, a complete gentleman was out of control. It was so sad. He recognised us till the end, which was a blessing but all he wanted to do was come home but mum just couldn’t look after him any more.
Bits and pieces of advice.... watch out for drs piling drugs on. At the very end, he was admitted to a psych unit and they were weaning him off every thing he calmed down. Those people were absolute SAINTS. He was put into compulsory guardianship because he kept trying to escape. We were so worried about him being in a psych unit, but it was fantastic where he was, I wish we hadn’t delayed it so much . They would have sorted out his meds smartly and there would have been less suffering for him.
Every move / change caused setbacks for him.
He became anxious in unfamiliar situations, was happiest at home. With mum. I wish I’d known this earlier, so I didn’t get so frustrated with him.
He used to love it when I took my dog into visit him.
Depression is another symptom of dementia. Some days he was just weepy. He was on Prozac for that too.
Its so hard. But he had probably close to 8 good years living pretty well with it at home. That’s what I try to remember. And it does wear you down. There are curve balls left right and centre!
It’s mentally exhausting Maybe this helped prepare me for my breast cancer journey...
I can only imagine the extra mental load you are carrying right now on top of your bc. :/
Sending hugs
Caz x
ps ask me anything! - Thank you @AllyJay - I'll check those out!! I've been looking at one of these or similar - I didn't want him catheterised as that increases infections as well as being very uncomfortable.
Got a referral today to a urologist & the first 2 I rang were booked up til March '21 & the GP wouldn't say it was 'urgent' to facilitate an earlier appt! :( Grrrrr It is BLOODY URGENT TO ME!! So I rang another one 100k away (there is only 1 within 50k of us) and 'if he accepts the referral' we may get an appt next Friday. Fingers crossed. - There are also male incontinence devices. One called Conveen and the other Paul's tubing. They are not indwelling catheters but are like a condom with a tube attached, which ends in a catheter bag. The Paul's tubing is a bit more tricky, and mar require a semi "standing to attention" as it were, but the Conveen is more like a penis plastic beanie, with the rubing, which needs to be fixed with micropore or similar. I don't know if either of these might do the trick.
- So sorry for your loss, @Caz1 .... until the incontinence, I was coping fine. Now it is a nightmare!
We can’t get to see a urologist til March next year! Bloody ridiculous! - @arpie my dear old dad died aged 90 a year ago. It was 10 years of dementia , the first 8 were bearable but the last couple were living hell for him, poor love. I’m so glad he’s at peace now. I have often thought how hard it would be for the dementia patients during quarantine and thank God hes not here. Still breaks my heart. The whole family blundered through, gathering knowledge as we went. Big learning curve.
Great idea to have a supportive group on here to share info .
Caz x - Just a small thought. Woolies have a new incontinence range from Belgium. Much cheaper than Tena and better designed.Here is a photo - they are called Confidere. There is a quite a range in this brand.
- I have a friend who purchases the plastic party coloured tablecloths for her mothers bed as they are cheap and disposable as waterproof protectors for the bed. She gets a few uses out of them by washing them in the bath and hanging on the line to dry.
- I think it's aorund January that Aldi special buys has their "aged care" products and they have a kylie / connie product that is similar and it is much much cheaper.
- Thanks for that @Keeping_positive1 - I've got to go thru all the steps before I get a referral to see the Continence Nurse for approval for the Continence Aid Payment Scheme .... and a buddy gave me 2 x Kylie sheets - but they are not waterproof, only absorbent, as I found out on the weekend. :(
- @arpie not sure if you are aware of the Continence Aid Payment Scheme? It is through Services Australia (Centrelink), and if eligible I believe the payment is around $600.00 per year. It is to help with the purchase of continence aids/pads.
Another product you may be interested in is a Kylie or Connie, it is placed on the bed to stop the leakage going through to the sheets. You can google Kylie Continence Aid to see their products, or Connie Continence Aids. I hope that is of help to you or anyone else here requiring the information.
