Visiting from overseas - what to do?

[OnePearlGuide]

My dad has experienced a steep decline after several years of random health issues. He has no short term memory, he's very confused, gets agitated and spends his time wandering the house or shadowing my mum. Almost no executive functioning capabilities. He's only 67.

Unbelievably, he has no diagnosis and there is no support for my mum. I'm worried about her too, she seems on the verge of a breakdown.

I emigrated many years ago but I'm flying back for a few days to see what I can do to help. No siblings so it's just me.

I live a 17 hour flight away and I have young children, so I feel pressure to try and do as much as I can in this visit. I may not be able to visit again for a year or longer.

What do you think I should do in the 5 days I'm there?

Make an emergency GP appointment and have him tested and for a checkup.

Make a start on a needs assessment and carers assessment with social services.

Ask Age UK for a benefits check appointment for things like Attendance Allowance.

Speak to Carers UK to see what help is available for your mum.

Look into private carers to help your mum.

Phone Dementia UK or the Alzheimer's Society for further advice.

Courage op, all the best. What a bad situation. Lucky your parents have you

I really feel for you, I hope the visit goes okay.

Has your mum got power of attorney? It sounds like it might maybe be too late but if not then do that. And get it for your mum as well just in case.

Try and make sure all finances are in your mum’s name as well as your dad’s. Sort out online banking that you can access as well if possible.

Try and get online access to all bills like energy etc.

And give your mum a big hug.

Im so sorry to hear this.

I would try to open as many doors as possible, with the knowledge that not all of them will lead anywhere.

As someone with two parents with dementia who’s knocked on a lot of doors, here’s what I’d do

Contact GP surgery. Some surgeries are great, others less so. What you’re hoping for is that they invite your dad in for a ‘health check’, which in turn is a spring board towards a memory clinic referral.

Get your mum registered with local carers charity. Basically, you’re looking to widen the support base around both your parents and this is a useful first step. Don’t worry about lack of diagnosis.

Investigate local dementia charities. The big national ones are useless, but if you have anything local they will be invaluable. I’d add Age Uk to ‘local’ charities, and Mind often run local dementia provision. So they should be on your list. The outcome you’re looking for here is to find activities your mum could accompany your dad to. This will put your mum on their radar and hopefully offer more support. Again, don’t worry about lack of diagnosis.

Spend nice time with your parents. That’s really the most important thing. You can’t solve all their problems. They will be really looking forward to seeing you. So much of the stuff I’ve listed above can be done from afar, once you’re back home.

If your mum reaches out to you for help, then listen first and foremost. Then I’d see if she’s open to contacting agencies that have sitting services or companionship and getting your mum a few hours a week when someone is looking after your dad.

The main thing is to make your parents support network and broad as possible. There’s lots out there, run by really great people. But that’s the long term goal, first off you need to just have that time with them.

I hope it goes okay.

Many thanks for the responses already! Really helpful.

He's had GP appointments and is on wait lists for MRIs and memory clinics. Even the private clinics seem to have insane wait lists.

Do you know whether it's possible to get a benefits check appointment or formal advice without a diagnosis? Is a diagnosis the first step or can other things been done concurrently?

One of the big problems is my father's personality. He's entirely dependent on my mum, yet doesn't think there's anything wrong with him. Even thinks he'll get his driving license back! He's been banned by the police. And he won't tolerate any strangers in the house, let alone a carer.

Do you think it's worth making an appointment to see a family lawyer? I'm not clear on how elder care works, if and when my father needs a care home. Thye live in NI. I understand my mum can stay in the house, but if my father's entire pension goes to paying for care home fees, then what will my mum live off? Like many of her generation, she followed my father's unfriendly career and sacrificed her own. And she has almost no pension. And neither of them have savings.

Thanks LawrieForShepherdsBoy. It's good to know how much I can do without a diagnosis. Really appreciate your detailed response 🙏

You can call Age NI regarding all your questions.

Alzheimer's Society also operate in NI.

Unfortunately you do need the diagnosis for substantive benefits such as Attendance Allowance. I wouldn’t assume that care home is inevitable. I know your dad doesn’t want it now, but further down the line a few hours a week drop in care will have a huge impact on your parents lives.

It’s great that your dad has been willing to go to the GP. Do you know when he was referred to memory clinic. Do you know the waiting list times? Don’t be scared to go back to the GP this week. I’ve had to push so much. It’s worth letting GP know that you are only child and so far away.

If your parents have no savings, then it’s worth seeing if your parents would be okay with a Needs Assessment from Social Services. Social Services sounds so scary, your parents may be reluctant. But a Needs Assessment could be invaluable here. If they’re happy to go ahead, call them yourself and again stress that you live abroad and there is no other family support.

But do start with the local Carers charity. The most local one you can find. They will put your mum on their case load and will hopefully be able to offer her the support she needs.

It’s really common for people to resist diagnosis for a long time. The dementia groups my parents attend say they are for people with dementia and cognitive decline. Its also really common for people at the earlier stages of dementia to not identify with others with the diagnosis. My dad is still early stages I see this so much in him.

Regional NHS bodies give money for dementia support to local charities. Often it will be the local Mind office, but it could be an independent charity or maybe the local Age Uk. You need to find out who is providing those services in your area. The GP will be able to tell you that. If your dad thinks there’s nothing wrong with him, he may not be ready yet to take part in anything they offer. But there may be something for your mum. Either support over the phone, or meet up groups for carers.

But with all of this, I would probably play it really gently. I don’t know your parents, but I’m guessing that they won’t want to be seen as a list of jobs. Enjoy your time with them. Maybe book the GP if you can go with them and get your mum to call carers charity. But then make notes on your phone and clear up some time when you’re back to make calls.

The only other urgent thing is Power of Attorney if that’s not already in place. It’s definitely worth prioritising that.

Unfortunately you do need the diagnosis for substantive benefits such as Attendance Allowance

We didn't with my DM. Poor her got really distressed at the Memory Clinic and the initial assessments had to be stopped. She wouldn't have tolerated am MRI. Didn't stop any benefit payments or local social services support from happening

@OnePearlGuide Hope you have a better solution now from all these replies. So good to see so much people shared their views and opinion.

www.alzheimers.org.uk/get-support/your-dementia-support-services/dementia-cafe

Also wonder if there's anything like a memory cafe near them?

Is your mum relatively young as well? Seems key for her to understand how to navigate all these processes if she's the main carer.

In addition to looking into whether he can give you power of attorney, in the meantime if your dad is willing/able to give his GP formal permission to liaise with you and your mum it makes things a lot easier.

may helpful answers here.

in a short period of time that you have, I would making sorting out a POA a priority, Will make your mums life a lot easier in the longer term, And get a handle on the bills, where they are and what the passwords are if you can. Once again, makes ongoing life for your mum a tiny bit easier. Also - if you don’t know, try and get the common questions for passwords recorded, Ie his mothers maiden name, first pet, first car etc recorded somewhere.

i tell you this out of experience,
im your mum in the situation. My husband is only 65. But we have a diagnosis.

Are they church goers? Many churches in NI (of all varieties) are likely to have an active community and you may be able to get on a visiting list, a local handyman and signposting to services which you might not know about. Call the parish office/minister/priest and ask.

Just my experience: I don't know about in NI but I asked my local council the Q about mums pension and dads and paying for at home care (not a care home) because similarly my dad got more pension and they said to fill in the form first just re him but if it was looking like it was going to leave her in a pickle they could look at both of their needs together. Or something like that. If I understood correctly... I felt reassured anyway but it never came to that. I dont know if this is typical everywhere or not nor what it's like in NI.

Maybe you or your mum could phone the council and ask how it works? They might be able to give you general explanation on a no names basis?

Re the above I'm in England

Good luck @OnePearlGuide .

Remember you can’t fix everything for them. It’s been a tough couple of years for my family, but one thing I always come back to with my siblings is the knowledge that our parents would want us to be happy living our lives.

Once a family member has dementia, the support you want to give seems to have no boundaries. There will always be more you wish you could do. But the truth is that you can only do so much. Even if you were living close by, you would still not be able to fix everything for them. I’ve given up the last 18 months for my parents, they have had increasing levels of care, now have live in, and I’m stall consumed by guilt at the stuff on my list that doesn’t get done. I can’t make everything okay again for them. And the amount that could be done fills to expand the space you have. So be kind to yourself.

I live in the UK and my parents are a long haul flight away. My mum has dementia. I go by myself for a week twice a year, plus an annual summer visit with my husband and kids. My dad insists just seeing me / us is a huge mood booster for both him and mum. I focus on having a good visit - I cook more elaborate meals and do some housework to take the pressure off my dad while I’m there. I also make sure he books some meals out with his friends while I stay with mum. I used to take her for long walks when she was able. Usually one or two nights my dad and I will stay up quite late and have a drink and a laugh. He has the logistics of finances sorted at this point but often asks my opinion about medical care. After each visit we’ll debrief about observations and ideas to make their day to day better but he insists just seeing me is good. I imagine your parents will feel similarly. Good luck.

How did you get on @OnePearlGuide? I hope you had an okay week and managed to have some good moments with both your parents.