Concerned, confused and keen to help my dad who is caring for my mum

[Sewserene]

Hi all,
Thanks for welcoming me to this online community - I’m not sure where to turn.

I will try to keep this brief- but it is hard. I know that from reading some of the posts on here - we have all had lengthy struggles.
In 2016 my mum started to show signs of significant/unusual memory loss. She was 61 at the time.

I didn't actually notice anything worrying until a family holiday in 2018 - when mum forgot that she had already fed the grandchildren breakfast, having just finished washing up their breakfast dishes....

We made some light-hearted comments about needing to go to the doctor - but we didn't push it. My dad tried a few times - but mum was fiercely adamant there was nothing unusual and she was just getting old.

Then in 2019 r dad had to go into hospital. It turned out to be stress related. It was only then that my family realised how much worse my mum had got as we tried to care for her.

To cut a long story short - over the last 12 months I've tried everything to get mum to get a diagnosis - I've tried to reason, and when that failed I've offered to frog march her, I've guilt-tripped her, I've tried to trick her. Nothing has worked and every time the subject is mentioned it makes for an unpleasant argument that lasts days.

Some of the symptoms she has displayed over the last 12 months:
- Significant short term memory loss
- Difficulty hearing
- Withdrawal from all social activities with family and friends
- Inability to follow a conversation
-Inability to understand and follow simple instructions (i.e. cooking)
-unable to navigate to places she has been going to locally for years
- paranoia (to the point of accusing me of poisoning her with my food)

The last of these has become the most distressing and isolating for my dad and my family. She will not let him do anything anymore. She gets upset if he talks to people on the phone, on email or text. She won't allow him to have any hobbies or interests, all their hobbies were joint hobbies so he never had a hobby without her being involved before. She is obsessed with the fact that he is talking or plotting against her.

This has caused anxiety and depression for my dad who is in his 70's. This has been made worse by the current lockdown. My dad has sought treatment and his doctor has been very helpful with his own ailments - however they claim they are unable to do anything for my mum unless she willingly goes to the doctors herself. Clearly, she is not going to do this! They did try to get her to come in for a check up - but the nurse dismissed her as they were too busy with the start of flu season and mum is young(ish!) and very fit.

I'm writing this post as I feel completely helpless and devastated that I can't help my mum through this - and importantly, my dad 'survive' this - as it does feel like that. I am so worried that my dad will have a mental breakdown as this is so stressful and they are locked up together for all this time due to COVID19 lock-down and isolation for elderly doesn't look likely to ease soon.

How can I help my mum to get a diagnosis?
How can I support my dad when he is not allowed to communicate with me (all their technology is shared and mum monitors it very suspiciously)?
How can you deal with the paranoia?
Should I ring the helpline?

Any thoughts and experiences greatly appreciated.
Thanks all.

 

[Sarasa]

Hi @Sewserene, and welcome to dementia talking point. You'll find lots of help and advice here. Your mother seems to be display typical signs of mid-stage dementia, but I know at the moment getting a diagnosis will be tricky due to lockdown etc.
It may be worth contacting the Alzheimer's Society for some advice:
Dementia Connect support line: 0333 150 3456 and dementia.connect@alzheimers.org.uk
Another thing you can do is keep a diary of concerns or think back to some of your concerns of the last few months and send that to a letter to the GP. Because of patient confidentiality they probably won't contact you directly, but it might make them realise they need to get her in for a proper check up or referral.
Do you or your father have Power of Attorney? If not it might be worth setting it up. They could both do it using you as their attorney so your mum doesn't feel singled out more information here.
During the current crisis local government has been stepping up to help look after vulnerable people. I wonder if it is worth your father contacting them or the local social services to see if there is any help available to help take pressure of him.

 

[MadgeW]

I sympathise with the distress of your Mum's paranoia and the arguments and denial. It is so difficult for our parents to accept that they are being affected to the extent that they are. I guess if you feel your Dad is at risk because of the stress, you could raise it with your local adult services (with your Dad's permission, or if you are very concerned, without) as a safeguarding issue, and they may be able to at least put in place or suggest some support for your Dad.

 

[lemonbalm]

Hello @Sewserene . This is a very difficult situation. My parents were much the same years ago. I suppose, with hindsight, I should have written to mum's doctor in confidence, as @Sarasa has suggested you do. Are there any minor ailments which your mum might be convinced to see the doctor about?

 

[Bod]

Two ideas.
!. Has Mum been tested for infection? Wee sample taken to Dr's. Infection can sometimes cause thing to get worse.

2. Get Dad a cheap mobile phone, that Mum need not know about. He only rings you when it's safe to do so.

Bod

 

[Bunpoots]

I’m concerned that the nurse dismissed your mum and I think I’d be inclined to complain about that. Getting your mum a check up could show a physical and treatable reason for her symptoms so she should not have been dismissed in that way. The GP is normally the first port of call for getting a referral for further tests so without their input I can’t see you getting very far.

I hope you can get a more sympathetic response in future as this is affecting your dad as much, if not worse than your mum.

 

[Frank24]

Hi there
What a difficult position. You poor thing ... and your parents. I think I would call the GP directly and explain the dynamic that is going on. You need a referral to a memory clinic. Mine are offering support and doing urgent home visits.. I’m not sure what is classified as urgent but it’s worth a push... sounds like you will have to push! Keep going. Call Age Concern. Call Admiral Nurses.. they advise people caring for people with dementia. Call everyone and be persistent. Without being a Debbie Downer you’ll need to get used to phoning everyone and fighting for support for your parents... good luck x