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Worried sick about Dad in shielded group, has dementia and won't stay indoors - advice please :(

10 replies

turkeyontheplate · 01/04/2020 12:43

My dad is nearly 80 and survived stage 4 lymphoma last year (was described as a miracle by the consultant), he's had hospitalisations for e-coli and a prostate infection since, and had a squamous cell carcinoma removed from his head. He's very frail and his white cell count still isn't normal. He got the NHS shielding letter, as did his partner who has lupus and liver disease.

The problem is that he has dementia - undiagnosed as he won't engage with services about it. Before he was ill he was a total powerhouse - fiercely political, active, a musician and artist and writer, very active, very independent, argumentative - you get the picture. He's stubborn and difficult and in no way accepts that he's frail now and needs to slow down.

Up to now, his partner has been keeping him going by showing him the NHS letter every morning, reminding him regularly what's happening, keeping him distracted with jobs etc. But yesterday he got itchy feet and decided he was going for a walk. She tried to persuade him not to but he got quite agitated and said he desperately needed to exercise, so she said "go for a walk for an hour and come straight back". Two hours later she got a phone call from him at his flat (they live separately but he spends a lot of time at her house, he's staying with her during the shielding period) asking whether he was supposed to be coming back to her house, as if not he'd pop to the shop for some food. She asked him how he'd got to his flat and he said he'd walked into town and caught the bus Sad. She picked him up, took him home and showed him the NHS letter again, he scoffed at it and said he's as fit as a fiddle.

What the hell can we do?! He's risking her life as well as his own. I live on the other side of the country, am in the vulnerable group myself and don't drive, so I can't share the load in any practical way. I'm so worried about them both Sad

OP posts:
UYScuti · 01/04/2020 12:48

Is there anyone that your father will listen to?

Wingedharpy · 01/04/2020 12:49

Is there anything of use to you on www.alzheimers.org.uk?
You can't be the only family in this position.

ScrapThatThen · 01/04/2020 12:51

Nightmare. It sounds like his partner is his carer and it will mainly fall to her to try to keep doing what she is doing which sounds amazingly hard. You could inform adult social care or his GP but honestly they will struggle to help with this very difficult issue. My Dad is also living with a partner with dementia and is vulnerable, luckily they live remotely and she doesn't wander, but I understand your fear.

turkeyontheplate · 01/04/2020 12:55

I'll start looking at all the dementia and alzheimers websites now, thanks for that idea Flowers I agree there must be lots of us struggling with this.

The trouble is that even if he listens and accepts, he'll forget. I'm sure when he left the house he intended to to have a quick walk and go straight home, but he'll have forgotten and reverted to a previous pattern of behaviour - walk to town, catch the bus, go back to his flat. He's terrible at being trapped and inactive, he always has been.

OP posts:
housemdwaswrong · 01/04/2020 13:00

I tried lots of things from various websites, and had varied success: www.mumsnet.com/Talk/thirty_days_only/3864767-help-keeping-dementia-parent-indoors-during-lockdown-any-ideas?msgid=95181543#95181543

So difficult. X

Mandatorymongoose · 01/04/2020 13:05

Alzheimers society have some information:
www.alzheimers.org.uk/get-support/coronavirus-supporting-person-dementia-home#content-start

Including links to some printable posters:

www.hse.ie/eng/services/news/newsfeatures/covid19-updates/partner-resources/

Dementia UKs Admiral Nurse helpline is available if you want to speak to a specialist nurse: 0800 888 6678

turkeyontheplate · 01/04/2020 13:11

Thanks so much for the advice and links, I am following it all up and forwarding to his partner Flowers Flowers

OP posts:
AnneJeanne · 01/04/2020 13:15

This was my Mil several years ago. My Fil had to lock her in, which caused fights as she also became aggressive as her dementia progressed. So sorry OP. I hope you are able to get some advice. 💐

Wingedharpy · 01/04/2020 13:17

Another random thought.

While I appreciate he shouldn't be going out at all as he's supposed to be shielding, under the circumstances, is his partner able to access anyone locally who would walk with your Dad (keeping 2 metres apart), for 1 hour or so daily/alternate days?

Local Facebook pages have lots of kind people volunteering to help others.

It's a big ask but it may help to make his (and her) lockdown experience a bit more tolerable - and, at least it would keep him off the bus!

Friendsofmine · 01/04/2020 13:40

Get the number of your local older adult community mental health team for advice. This is a very common issue atm sadly.

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