I am new to the forum. My mum is 78 and has had PD for about 4 years. She now also has dementia. She is still living at home with her brother with the help of a good care package. I care for her in situ 2 days a week.
I've noticed recently that her meds seem to 'wear off' before she is due to have the next dosage (carers dish out meds according to PNurse's timings).
When she has a 'dip' she gets very tearful and when questioned says she just wishes she were 'normal'. It's very heartbreaking. But 40 mins after having meds she looks and obviously feels much better.
I find if I give her meds 30 mins earlier or so we generally avoid these dips, but not sure if I'm doing the right thing - at the moment she sleeps well at night, so it feels OK to top up her drugs during the day. I guess eventually the meds will stop working all together. We are seeing her neuro end of April but I just wanted to see if anyone else had any experience of this?
Hi. Check with the nurse but it seems you are doing the right thing. Your mum must take the next dose of meds BEFORE she goes 'off' or has the 'dip' as you refer to it
Phew. Thank you. Ah, that's what the 'off' thing means. I'll double check. I feel relieved.
I would definintely give her what you can see she needs. At your mum's age and given the fact she has dementia to cope with too, there is no purpose in making her wait 'til specific times if she is distressed. Sally
Thanks Sally, sorry I missed this, am not often on the forum. We have now seen the PNurse who is brilliant and who tried some liquid madopar to see if it would 'boost' mum's sinemet, but it hasn't worked at all.
Caring from a distance is a bit of a nightmare and I wonder if people have experience of what happens when meds wear off more quickly? I have emailed the PN to see if she has any more suggestions, but it is very difficult for the morning carer once mum's night-time slow release meds have worn off, she can't even sit up first thing in the morning - and I'm really worried the care agency will say her case is too difficult for them and we will have to start again with a new agency and set of carers, which fills me with dread - or they will suggest again, a nursing home, which I don't want for her either.
We are very lucky with her regular carers, but they are finding it increasingly difficult, as she seems to be 'off' for most of the day now.
Any help appreciated.