Ageing parents - dementia

[luckyluckyluck3]

Please tell me what to do! My parents are in their 70s. They live several hours away. Not esp close family. Generally only see them a few times a year at most and we go there and stay locally. Dad is a few years older than my Mum. He is in good to reasonable health, I think. Mum has a long term physical illness (weakens muscles) and - for some years (4apx) - has shown signs of cognitive decline. They have really done next to nothing about this: visited the GP a couple of times and were fobbed off/I expect they didn’t really explain it truthfully. Obviously I fear it’s dementia but am well aware that it might not be - it could be something a lot less serious. But who knows.

Every time I speak to Mum, it’s clear that she isn’t very well: she has very little short term memory (can’t tell me things about where they’re meeting someone the next day, for example) and I cannot believe that my Dad is burying his head in the sand. I know it must be scary and she is a very stubborn woman but I am getting so cross with him for not doing anything. I’ve tried being kind and gentle with him/reasoning - as I say, this is a long term problem. He has admitted she wouldn’t be able to look after herself if he suddenly died. I’ve explained that - were that to happen - she would need to go into care immediately but we would have no diagnosis or way to make that happen, I don’t think. It feels like it’s bordering on neglect (I’ve not said that).

I have a couple of family members who have also said to him about it. One he is unlikely to listen to and one who is less willing to get into an argument. A friend has also mentioned it. I think I’m the only person who has spoken to her - one one occasion it lead to the fruitless trip to the GP and, on the other, she promised she’d go and then didn’t. I obviously understand that she’s not really capable of engaging with the situation.

Is there anything you think I could do?! Please be as hard as you think you need to be! Also, if the status quo remains, what can I do to make life easier were the worst to happen, please?

Thanks for getting this far!

@luckyluckyluck3 I'm sorry your mum is ill. Could you get power of attorney sorted while she's still capable??? Can you have a word with your mum doctor or social services and see if they can help? Not an easy situation, sending hugs x

Thank you. I think Dad is willing to sort PoA. I need to read up and check which is which as I know there are different sorts: I think Mum would happily sign anything Dad was also signing. Dad has contacted the GP without Mum’s knowing - I think he’s hoping that the GP will just ambush her when she’s there about something else, but I think that’s unlikely. I might look into SS - it would feel like an extreme move to ‘threaten’ him with that, but maybe it would precipitate some action.

@luckyluckyluck3 the power of attorney will only work if your mum is still mentally clear. Social services will only talk directly to your dad unless he has given them written permission for you to be involved. Going through similar with my elderly dad. 💐🙏❤️

@luckyluckyluck3 i think there is an elderly parents bit on here ? They might have more accurate information x

You can write to your mother's GP expressing your concerns - telling them more or less what you've told us here. They won't discuss the situation with you, but this will probably lead to them visiting or inviting her to come into the surgery.

I’d contact adult social services, it can be an anonymous referral. All is not lost, my uncle has cognitive decline, he’s responded very well to medication. He’s bumbling along really well, supportive family, living at home, does loads around the house, active, just needs prompts.

Honestly, as long as your father is coping with the situation, I dont think I would worry too much about the lack of a dementia diagnosis at the moment. Would it improve your mum's life in any way? I suspect not. Nothing you have said makes me think that there is any element of neglect on the part of your father.

Based on a very recent experience I had with a very elderly relative experiencing a sudden health crisis (though admittedly, physical rather than mental), I think that if the worse happens and your father dies first, it should be possible via her GP to get some sort of crisis team out almost immediately to assess her and take appropriate steps ...

I agree with @Oldnproud - I don't think a diagnosis would achieve so much that its worth spending all your energy on. I also wouldn't focus on a diagnosis before getting the PoA.

The online .gov pages about PoA are pretty good, they will walk you through the process.

Someone with dementia can make an LPA as long as they understand what they are signing at the time they are signing it, and the powers they are giving to someone else by signing the document. I work in this area and prepare LPAs almost everyday.

We are further on the journey than you. Good advice below, regards PoA. Things you might want to progress to, as they become necessary:

• GP to refer your DM to memory clinic/dementia assessment. There are medicines which slow the progression of the disease in some cases, if started early, so it can be helpful.It also gives you a case for support. They could get involved in a dementia cafe or other support group too.

• apply for attendance allowance if she needs significant care from your dad (Age UK/Alzheimer's society have info)

• make sure you know where to find info on carer agencies/care homes in case needed urgently - local authority will probably have a directory.

• approach Social Services to do care assessments if you think you dad needs external help or respite.

• establish their approx. financial position as it makes a difference to how any care is funded.

• think about what you would do if your dad became ill or went into hospital. My sister and I had to use annual leave to care for mum when we had this situation. Also bear in mind dementia can worsen abruptly after a traumatic event such as a fall/broken hip/hospital stay.

• if an emergency happens such as a fall or sudden illness of one of them, community nurse team/adult social care between them can usually sort things out quickly. You can register your dad as a carer so that if he e.g. had an accident whilst out, emergency service would know to go and pick up your mum.

It's quite overwhelming so don't try and do it all at once! Age UK local teams are very helpful in navigating all this.

But yes, the hardest thing is my poor dad's slow pace of making any changes/tendency to minimise difficulties/reluctance to accept help.

Thank you. This is really helpful. I’m sorry you’re going through this.

Its a long journey. Both in laws have dementia. MIL is 80 and now under DOLS in a care home and FIL is managing in assisted living with some help from us. POA for finance and health and welfare is so important but not sure what happens if the person doesn't have capacity.

We started our journey with an accompanied trip to the doctors and passed the doctor a note with our concerns on it for them to read without alerting loved one of the content. They then did a memory test and referral to the memory clinic. The thing is they hide things and letters. You have to chase the doctors yourself and that's why POA is so important.