I’ve seen many stories of women living with parkinsons for more than 10 years and now in their 60s still independent with some care support. My MIL is completely different.
Diagnosed in 2016 following tremor for about a year prior.
We don’t think shes seen a neurologist since 2023 when she was around stage 3.
She’s not compliant with medication believing it causes her not to sleep or makes her lightheaded. She also believes she takes too many tablets and it will make her condition progress quicker despite the neurologist telling her otherwise.
She takes:
1 x 1mg rasigiline in the morning
3x 2mg ropinirole 3 time a day
3 x 50/12.5mg co carelodopa 3 times a day
She was prescribed sinemet but didn’t want to take it as she thought it was giving her hallucinations.
She was prescribed ropinirole xl 1 tablet twice a day but they were “too big”
She’s been increasingly forgetful since 2023 but this year she’s really showing signs of parkinsons dementia.
We’ve approached many time over the years about POA but she thinks everyone wants to steal her money.
We’re trying to get her moved closer to her children in an independent living retirement home, whilst she’s looking at them she’s open to it and the later backtracks and only thinks of negatives none of the positives.
She has the same conversations multiple times a day and over multiple days.
She’s up all night wandering about thinking she can smell things or things are happening despite reassurances otherwise.
We’ve not insured her car bur she’s insistent on wanting to still drive but we believe she’s a danger to herself and others as a year ago she started to get lost on familiar routes and went the wrong way round a roundabout. There have been other instances and just generally her reactions and judgement are impaired.
There are far too many things to type in general we are having to get somone to check on her everyday, shes not eating properly mostly living off sweets, chocolate or sandwiches and gets confused with cooking a microwave meal.
We have asked the gp to do a mental capacity check but not heard back yet. She has moments where she seems OK but rhe majority of the time now she’s not completely with it.
just wondered if anyone else had this situation where someone just won’t accept help or see the reality of the situation
Welcome to the forum, JH88, and thank you for sharing your experience. I’m so sorry to hear about the challenges your mother-in-law is facing - it sounds incredibly tough for both her and the family. It’s really hard when someone isn’t able to accept the help they need, especially when you can see the reality of the situation.
It’s not uncommon for people with Parkinson’s to be in denial, and the situation you’re describing - difficulty accepting medications, confusion, and fear of losing independence - is something I’m sure many of us here can relate to. It might help to involve a Parkinson’s nurse who could mediate these conversations and offer further guidance.
You can also call our free, confidential helpline for support and advice: 0808 800 0303. Our trained experts and specialist nurses are on hand anytime between 9am and 6pm Monday to Friday, and 10am and 1pm on Saturdays.
In addition, here’s a link to a hopefully helpful resource on supporting someone with Parkinson’s, which includes information on looking after yourself, which may be the last thing on your mind right now, but it’s important to look after your own health and mental wellbeing too.
I hope you get the mental capacity check soon and that it leads to the support your mother-in-law really needs.
Please remember, you’re not alone in this - there are others in this community who understand what you’re going through, and we’re here for support anytime you need it
Hi jh88, i know exactly what you are going through as my hwp is going through a very similar situation to your mil. My hwp was also diagnosed in 2016, fine for many years and now not so good. He recently had the drug ropinerole removed from his collection as its known to cause many of the symptoms your mil is experiencing. They also looked at possible dementia, but recent ct scan, memory tests, were deemed relatively ok. Its very difficult for family members to manage all these difficulties. I would say contact all the people in your mils team. You can also get good advice from the pd uk helpline and there are many helpful leaflets to order. I hope you get some answers soon best wishes c
