Parkinson's and how to navigate

[foodglorious]

Myself and DH are trying to help his parents in any way we can but its proving to be a struggle .

I will say MIL has always been a very difficult woman and Parkinson's seems to have magnified these traits.

She is 73, has been diagnosed for around 5 years.

The issue we face is his dad gives us snippets of quite alarming information regarding her health/symptoms and then panics because she will be "angry" if she finds out we have been told.
In my mind it seems to be progressing quite fast with her not able to now make a cup of tea or follow any simple sequences, she seems confused alot and repeats herself, she cannot be left alone for very long and will constantly call asking where FIL is.
Shes getting more and more urine infections which adds to the confusion and hallucinations and its taking her longer to overcome them despite 2/3 courses of antibiotics.
I think she is showing signs of dementia but my DH is in a slight bit of denial which is understandable and im by no means an expert.

There never seems to be any "good days" now, she rarely leaves the house and is riddled with anxiety.

DH goes over at least twice a week but I think we probably now need to up our game and help more, we have 3 young children and both work FT so it will take a bit of a juggling act but that is life i suppose.

Im thinking if cooking more meals to help FIL out as he needs to do everything, im just really looking for other peoples experiences and what to expect,

It does sound a lot like Parkinsons dementia, especially given the hallucinations and memory problems.

Are they honest when they see the specialist or Parkinsons nurse? There are effective ways to change her medication to reduce the hallucinations and anxiety but if FIL is very ostrich about it, it won't get done.

Depending how much you want to be involved, you could ask to go to her next review (and get it brought forward) so the specialist and you get a real picture of what is going on.

Thank you.

DH managed to go to one review with her around 6 months ago. The nurse was blunt, but kind.

He got the impression that the nurse felt like she could be managing/doing alot more than she was. they changed her medication but that hasnt made any impact really.

Its only fairly recently that FIL has been giving us a bit more insight into whats been happening so none of this was mentioned at the review DH was in, and i doubt FIL is bringing it up.

They have always been quite a secretive family,

If dementia is kicking in, and the nurse doesn't know, she will suggest MIL could do more, as the nurse won't realise the dementia is stopping her.

It's always difficult when someone who has had a tricky personality develops dementia as family can find it hard to see the difference between what dementia causes and awkward behaviour they expect.

When I first met my FIL I thought he had dementia but was told he was just a bit weird. A few years later it was very obvious and he was diagnosed. DH and I cleared out his study and it became obvious when he changed from an odd guy who hoarded to someone who didn't know what he was doing.

Practically to the end MIL struggled to see he wasn't winding her up on purpose but it was the dementia talking.

The confusion and anxiety sounds similar to my FIL, who has LBD (a very close relative of Parkinsons), so it sounds like Parkinsons dementia is quite likely. As is so often said on MN, make sure you think very clearly about what's sustainable for you as a family when you offer help - of course you want to help, but your Mil's needs will only get greater, and it's hard to step down from help that you've originally offered. Decide what's manageable and then take the approach that anything else needs to be outsourced.

It sounds like your FIL is quite nervous of his wife and scared of giving you the whole picture. Do you have contact details for the Parkinson's nurse or the GP? This sounds like potentially a situation where letting them know your concerns on a confidential basis might be worthwhile. Depending on what MIL is like when she's 'angry', there could be safeguarding concerns for your FIL. That might sound extreme, but I have (sadly) seen an unprecedented example of this quite recently, in a similar situation.

Please do reach out to Parkinsons UK, they have wonderful local advisers who can help with attendance allowance, blue badge etc, a brilliant helpline & lots of information leaflets you could order to help tackle difficult conversations . It’s tough x

Blimey this sounds quite an intense level of need.

In your situation with a young family, rather than upping your input of things like cooking meals, I agree with focusing your efforts on slightly more strategic things - like talking to Parkinsons UK, getting your FIL to talk to you in front of her, getting PoA, going to the specialist appointments together, and above all referring her to social services for a needs assessment. If she can't even manage a cup of tea independently, she is 100% dependent on your FIL and my guess would be that he is at high risk of getting ill himself.

I would start to encourage them to eat more ready meals and to look at meal planning and shopping needs. So helping with making decisions and planning. Outsource everything that doesn't really need you as an individual.

Some of the symptoms of Parkinson's are actually side effects of the medication. My DF's medication is tweaked regularly to try and find the right balance between preventing Parkinson's symptoms and keeping side effects manageable.

The meds to subdue the involuntary movement seem to also subdue the cognitive pathways and cause hallucinations.

Having said all that, it sounds as though dementia is at play with your MIL. Parkinson's alone wouldn't explain the confusion I'd have thought.

Something else I'll say is that all of us with our cognitive pathways intact can't really judge what the person with Parkinson's 'should' be capable of. I've watched my dad trying to do something seemingly simple and you can see the effort it takes. For the person living with them, the frustration of daily tasks taking so long and requiring increasing support is massive. The carer needs support and a break too.

Ok thanks for this, its hard to now if this is the norm and whats expected of us.

We are a very close family, but my mum and dad are much younger than DHs parents so we are quite inexperienced in this.

Im also quite a black and white person, I see how things are and want to react in the best way possible, DH and his parents are ditherers bless them so it takes a lot more gentle pushing in right direction.

I also dont want to overstep.

contact PD nurse and discuss with PD UK. Also look at lewy body dementia ?
PD nurses tend to be very to the point and no nonsense but obviously wont know something is not as it seems unless told. Patients also have a good way of masking and saying everything ok as soon as they see consultant but a good PD nurse will see through it if given the heads up.

You mentioned frequent UTIs so I wondered if she is eating/drinking properly? My father doesn't drink much because he struggles to swallow so this is a big issue with him. Parkinsons has sadly put a super zoom on his stubborn/pig headed streak, with the dementia added in we are now dealing with the worst version of him I've ever seen and it's bloody heartbreaking.