Are you Caring for a Partner & Parents with Dementia/Alzheimers
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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.1
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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.
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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!
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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.4 -
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 NSW1 -
@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.1 -
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.8 -
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
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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!!!5
