My Mum has been diagnosed for 4 or 5 years now, she’s 82. This year she has developed a lot more symptoms to the point where I think she could be described as in the advanced stage, or certainly a much more developed stage.
She is cared for by my Dad, I don’t live nearby but visit every other week. Its just them, they have no other support, which I think in itself is an issue. What I wanted to ask though is how best to respond to my Mum when she says things that are not rational. For example, she has just said on video chat when talking about her constant feelings that she needs to go to the toilet at night-time as ‘Its not just me though, the others are shouting to go too’. No-one other than my Dad lives with her, and its been that way for nearly 30 years.
As this is all new to us, we tend to question her, asking what she means and who else does she think is there. She usually remains silent. I don’t know if it upsets her to ask this, or confuses her, because tbh we can’t tell what her reactions are a lot of the time. What is the best way to respond to her? I think our current thinking is if we challenge her it will get her to think it through and realise she’s not making sense, but it doesn’t seem to help.
On the subject of support, she and my Dad have no outside support. They have a GP who they are only managing to get back into contact with due to lockdown and a Parkinson’s team that they have a meeting with every 6 months. GP tends to palm most things off as a PD issue and to speak to that team, we’ve also had it the other way round i.e. ‘that’s not PD, speak to your GP’. They are not getting enough support imo considering her symptoms are advancing and my Dad is on his own with her, with a heart condition. Can I ask what support people do tend to receive? Does this tend to be in the form of different specialist appointments (physio, occupational therapy) along with regular same nurse contact? How often should my Mum be seeing someone? Just need any sort of gauge to go by!
Many thanks for any advice
Hi @Hayley and welcome to the forums, sorry to hear about the worsening symptoms your mum has been experiencing. I’m sure other forum members will be happy to welcome you and share their experiences and what has worked for them too.
Hallucinations or delusions can be a side effect of Parkinson’s medication, or for some people can be a symptom of the condition itself. Do check out our Hallucinations and Delusions and our Managing Hallucinations and Delusions: Tips for Family, Friends and Carers pages on the Parkinson’s UK website which suggests some good coping mechanisms and approaches to take.
Another common cause of hallucinations or disorientation can be a urine infection, which your mum’s GP practice should be able to rule in or out with a test.
Do get in touch with your mum’s Parkinson’s team and discuss the changes in her condition with them, they should be able to review her symptoms and make changes to her medication if needed.
Clinic input can vary across the UK, and most people may only see a consultant every 6 months, or even annually. In between times most people should have a Parkinson’s Nurse that you can contact for support. Some clinics may also have other services, such as Physiotherapy, Occupational Therapy or Speech and Language Therapy available in house, or should at least be able to make referrals to similar services in the community.
With regard to support for your mum and dad at home, they should be able to request a care needs assessment from their local authority to identify services that can support them both. The assessment process and funding available can vary across the UK, so do contact our Helpline and Local Adviser Service who will be able to give more specific advice on how this works in your Mum and Dad’s area. We also have Nurse Advisers available on our helpline if you would like a further chat about your mum’s symptoms and treatment too.
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Thank you for your reply David. Mum has approached her GP and her urine was tested, I can’t say whether she was told there was an infection but she was given a course of antibiotics for 3-4 days which does not appear to have improved the toilet visits at night. But we may be able to rule that out anyway, so good to know, I had no idea there was a connection between an infection and hallucinations. A PD Nurse is visiting them today, after much pushing, so we’ll see where to go from there after her visit.