I want to help my parents

[Emeraldrings]

My mum was diagnosed with alzheimer's today and I feel so upset. She is well enough to know she has alzheimer's and the nurse is coming round next week to explain next steps and what support is available for her and my dad.
Mum is upset and she doesn't like the fact my dad has told me and my siblings already. I'm so sad for her.
My dad will not accept what support is offered because he thinks he can do everything. We all try to help where we can but he insists he doesn't need help or a break. He won't listen that we want to help.
The doctor and church have offered to help but he still insists he is fine. I'm worried he will make himself ill with his insistance that he can cope.
I want to help him. I'm considering changing jobs mainly for my autistic 3 year old but I'm thinking I could also spend more time with my parents as we live an hour away.
Has anyone had a stubborn parent and did you manage to convince them to accept help before they got sick?

I have been where you are and it is so tough. Ultimately no you cannot force them to have help until they are ready to accept it, also at this stage it can be very difficult to think about what the future might look like, although truthfully this is impossible to do anyway, everyone's dementia journey is so different. It will all feel very raw at the moment. Even if you know in your heart what it is it hits different when a doctor confirms it. I was with my Mum when she was diagnosed and we all sat very numb eating a cake and coffee before we left, it was surreal.

What has really helped my parents is going to dementia groups, they have lovely activities Mum was able to join in with and Dad gets a chance to chat to others in a similar position and they intend have people there to advise on specific things. My parents still go although Mums dementia is very advanced so she doesn't join in anymore.

She is still at home as Dad is reluctant to allow others to care for her, in my experience it is normally some kind of crisis point which forces their hand into accepting some form of help and then it becomes the norm.

If she is early stages have a look at the book contented dementia if you can, I will admit I couldn't it was too hard at the time and by the time I read it too late for a lot of it.

The best way I find to help is to go round regularly if you can and try to find some way your Dad can go and do something on his own to get a break.

Also really take care of yourself, I was a mess after my Mum was diagnosed and its only looking back I can see just how hard it hit me. There will be some very dark days but not every day will be like that, we still manage to have a laugh at things.

Happy to chat if it helps.

I am sorry about your Mum's diagnosis, it is really hard. My Mum was ill with a different diagnosis and was stubborn to the end. When she actually did call and ask for help we understood that she knew what was happening. My in laws were also stubborn however there came a time where they were no longer safe, lots of falls, confusion caused by UTI's, badly controlled diabetes, Parkinson's and Dementia. I had previously had conversations about what may need to happen in the future. I had to explain that we needed to keep them safe and that staying at home with carers four times a day was no longer an option. Mum in law was admitted to hospital, Father in Law then fell ill too and we had to persuade him to go into a care home to be taken care of. They are now both in the same care home where they are safe, taken care of and Mum in Laws diet and blood sugar levels are carefully monitored. Not what we wanted for either of them but we had all of the care in place we could and all of the adaptations and things still deteriorated. We did all we could whilst they were at home and eventually had to admit defeat for their own safeguarding. Please do look into getting POA as this will make things easier should you need to make decisions on their behalf in the future, make phone calls to utility companies etc. Very importantly you also need to take care of yourself, things tend to decline very quickly responsibility wise, we were being called all hours of the day and night for emergencies and not such emergencies and we were only 10 minutes away.

I think don't despair and don't try to fix everything now. The diagnosis was only Friday, it takes time to process, this is a long road so don't use all your fuel on revving up now.

What has changed since Friday - was your dad coping last week, or have things been going badly wrong already and thats why the diagnosis has happened?

You have a child with additional needs, make your decisions first of all regarding them. Your mum does have your dad. Give it time and think it through multiple times. Try and work out what the actual problem is now. It may be that mostly you are worrying about things that haven't happened yet?

We've been there too. DFIL confused wanting to keep her home with him and having to do everything himself.

If he had accepted help, it would never have reached the crises or did.

I would see if you can find out if he wants to keep her at home as long as possible and gently point out that if he's getting some help, he's far more likely to achieve what he wants.

*it did.

You've had done really good advice already.

Some practical things you can do are:

Help them to apply for Attendance Allowance and a Blue Badge. Also Pension Credit if you think she'll be eligible.

Get your DF registered as your DM's Carer at her GP.

Find out if there are any activities for people with Dementia locally and encourage them to go.

It might be too late to get POA for you DM now she has a diagnosis but it's not too late hit your DF. I'd see if he will give you both financial and health.

Fill in the Herbert Protocol. It varies with each Police Force, so google the county they're in and Herbert Protocol, like "Surry Herbert Protocol" and follow the instructions. Its incredibly useful to do this before she starts to wonder. Keep it on your phone so that you can access it easily. Our DMIL was missing at midnight. In those sort of situations it's useful to

I'd also fill in the This Is Me Leaflet and again, keep it on your phone. It can be really useful if she needs to go into Hospital, have Carers or moves to a Care Home.

Thanks for the replies.
We already have POA medical and financial for my mum and medical POA for my dad. They have applied for a blue badge and attendance allowance and I will suggest to dad about being registered as her carer I'm not sure if DSis may have got them to do this.
Unfortunately they just refuse to attend clubs or groups, I'm not really sure why.
My mum had a bad fall at Christmas and although she wasn't in great health before this was when she started going downhill. She has started reading again recently and doing bits of housework so she is doing okay in some ways but I still feel like I've been hit by a bus. Even though I I obviously know my parents won't live forever I suppose this has just made it more real.
At the moment she's okay at home and can even be on her own for short periods of time but this will change. She is so isolated and my dad is going the same way (isolated).

but I still feel like I've been hit by a bus.

I totally get that feeling. It was my DMIL rather than my DM but I could see how it affected DH & DMIL so much to see their DM deteriorate.

If they won't go to groups, are you or your DSis free to take your DM?

I have a DA who has become immobile. I'm on a bit of a mission to keep taking her out so that she realises that she's not stuck inside forever.

They are all stubborn ...sadly
All you can do is let it play out and be ready to pick up the peace's.
There is a lot of support out there.
It sounds like you having a lot of loving supportive families around.
Just keep lines of communication open with your family and your parents.
I'm finding as the situation gets worse whatever help is given it's not good enough and there is anger.
But in the end there is only certain options and you have to make the best if it.
Think we are back to 'stick your head in the sand '
I know what needs to happen......it will give no please to say 'I told you so' in 6 months time ....when do then what we really need to do now.
Unfortunately it will be stressful for everyone in the mean time.

It sounds like getting used to a companion carer would be really valuable. It also sounds really unlikely that they will agree to meet one. But just to have someone sit with your mum, perhaps with a shared interest, so that your dad can reliably go out, would be a huge step in the right direction.

My dad just refuses to go out. I am over every Friday and have suggested he meets up with friends or just has some time for himself.
I'm very close to my mum and would be more than happy to spend time with her and I think it would be good for dad to have time to himself but he refuses

Getting a companion in would be brilliant but as you say absolutely will not be considered.
Long term my DSis has looked at care homes but its very expensive and my dad has said he will not put mum in a home anyway.
I see dad struggle and is clearly exhausted but every attempt at help is blocked.
DS is sat with me, he is refusing to sleep and maybe picking up on my anxiety. Work tomorrow which is incredibly stressful at the moment and I just don't know how much more I can take.

Are you able to be there when the Nurse comes and talks to them?

It's grim. My experience is that the situation collapses to a nursing home earlier than it needs to because the carer(s) burn themselves out doing 24/7 and insisting that the person with dementia won't accept outside help- when in fact they might, given time and support.

Another vote for trying to be there if they have a specialist nurse appointment, or asking your dad to see his own GP while you sit with your mum, and write to the GP beforehand letting them know how much stress he is under.

Can he say what he is worried about if he does go for a stroll while you are there?

I think they both need time to let the news sink in. Let them try and manage themselves and step in, in stages, when the need arises. They will realise they'll need help eventually but forcing the issue now might alienate them.

So much THIS

Absolutely agree. My Dad refused help despite not being very well himself. Eventually he gave in to someone to help with housework but my Mum refused to interact with her or to go to any groups. I went weekly which I never felt was enough but I lived far away and have a severely disabled DD and work. Sadly my Dad finally got a severe infection and passed away, leaving nothing in place for my Mum! Overall try to do whatever you can to avoid this crisis situation but it is incredibly hard when they refuse - which is extremely common. Try Admiral Nurses - specialist dementia nurses - they were very helpful for us.

That wasn't our experience at all. DFIL let it get to crises point and still wouldn't accept help. SS had to step in due to safeguarding concerns.

Some people will just not accept help.

It's very hard OP, when the main carer is being obstructive, and they sound like very private people. Is your mum able to express a preference? As in, can she tell your dad to bugger off for a walk and leave you and her together for a while? One of our biggest problems was / is that FIL has POA for MIL but he's really not up to it.

It could be that it is so new they are just in 'we'll do whatever it takes' mode. Guilt, and desperately wanting things to go on as 'normal' for as long as possible. As a DIL it was easier for me to step back and see the big picture, but FIL, DH and SIL were just over their heads in guilt and feeling bad for MIL at the start.

They struggled on at home, with increasing help from SIL, until it became clear that FIL could no longer meet MILs need and could not care for her safely. She was very dehydrated (he didn't make sure she was drinking), hadn't been taking her meds (he just handed them to her and expected her to take them, she just stuffed them down the sofa cushions, wrapped them in hankies and stashed them in various places). She wasn't clean - he didn't supervise her in the shower or in the toilet. It came to a head when she became delirious due to a severe UTI and was taken to hospital. That was the crisis that tipped them over: she went into a nursing home straight from hospital. It turned out she'd been having frequent falls, which FIL wasn't telling us about. It was getting to the point that a pp mentions - if she hadn't got ill enough to be admitted to hospital, we would have had to step in, in some way, as MIL was not safe at home with FIL.

So not very cheery but experience from this and from this board is that it'll take a crisis to force a change. Might be a wee one, might be a big one - but they will likely attempt to carry on 'as normal' for as long as they can, will resist all forms of help / change / care from outside, until they really can't - or the decision is taken out of their hands.