Caring for elderly parents? Pop in for support/advice/a bit of a rant...

[picklemepopcorn]

Pace yourself, it's a marathon not a sprint!

This is a safe place to offload- don't be embarrassed about how you feel. No judgement here...

There are lovely people here with practical experience of some of the issues which crop up who'll share their hard won knowledge!

Just reading back...I recognise all of this. I’m about 7 yrs in and we have dreadful days, bad days and ok days-when I leave DD and I always look at one another and sigh with relief. I’m trying not to think about it except when I’m with her

It's only a week that dad died
Mum is obviously distraught but she's also having massive anxiety over the extraordinary mess of paper he's left behind

It's truly appalling, like junk mail from 20 years ago, but she's struggling with me wanting to sort through it.

She never did anything for herself so she's panicking about the most basic things. It's quite weird to see, I've lived alone all my life, suddenly I feel like I've been given a child to look after.

grace it's such a shock for both of you . How is your mum physically? Is it that your Dad took care of the household affairs or literally everything?

Thanks Cabbage

I think I mean he did everything. She has no idea what the household budget is, no idea what's in the bank, doesn't know where things like gas meter and fuse box are.

I have no problem helping with things but she is completely overwhelmed because she doesn't have a clue what to do about anything. She keeps alternating between grief, then anxiety attacks about all the basics.

oh gosh, that sounds awful. I know probably neither of you feel like this right now but people have amazing capacity to adapt - she may find herself able to do things she never thought possible. I remember finding this article very touching and quite positive - maybe it will help (if you have time) medium.com/s/story/for-46-years-my-mum-did-everything-for-my-dad-7b3beaa4680

Do you have other family around to help you/reassure her?

grace that is so hard for her and you. Can you make lists for her of what to do if a, b and c happen? and go through the bank statements etc? I know it is hard to do, and probably the last thing YOU need, but she will have to take up the reins herself at some point and if you can help her do that it will make things easier for you too. My DM had never dealt with money, or lightbulbs, or or or but she managed very well when she knew that she had to, and in fact became fiercely independent.

I might add some slightly different advice. DM was very confident when my dad died and refused any help. But had not done much banking and made a complete pigs ear of it, taking bad advice from a very dim man at Lloyds, and meaning that when she needed money hers was all tied up and dependent on stock market performance. She was also very vulnerable to cold callers.

If you are going to have to sort finances out my advice would be to get her to sign a Financial POA or third party access. Once done it is very straightforward. Get regular bills on-line, and allow her a small savings account with a debit card, one that does not allow overdrafts and which you can top up from the main account via an on-line app. Get invoices etc emailed to you.

It will take a lot of the stress off her, at least till she gets used to other stuff like socialising on her own, and will protect her from the many nasty fraudsters out there.

It also means that you won't have to sort it out a second time.

I grabbed all the non junk mail and stuck it in a suitcase to sort at home. It was reasonably OK to sort stuff by category and date in front of the telly and put in level arch files. DD was usually sprawled out on the floor doing her homework so we kept each other company. There is no way I could have done it anywhere near my mother.

Grace I am so sorry I had not acknowledged your DF's death. to you and the family.
I do not know if you are still staying with DM but I think that if you can manage to remove chunks of paperwork to sort, out of the house, you may find it much easier. Having to get each decision approved may drive you to despair.

So difficult where an elderly parent it faced with having to learn so many new skills at a time when they are probably least able to. However if you can try to set things up for the new future with you having some ability to have input remotely it will help you enormously going forward.

That’s so difficult Grace but I second the idea about uninvolving her right now just to make it easier as you might be quicker without her confusion to deal with and once it’s better organised then gradually feed bits back for her?

That’s so difficult Grace but I second the idea about uninvolving her right now just to make it easier as you might be quicker without her confusion to deal with and once it’s better organised then gradually feed bits back for her?

Evening everyone. I’m new here after being advised to come here after my thread in AIBU.

My mum has Motor Neurone disease, officially diagnosed in July. She has Progressive Bulber Palsy which affects her muscles in her mouth so speaking and swallowing are affected. She can no longer speak and has trouble and can no longer swallow anything thicker than a milkshake.

Dad is struggling and his memory is shot (possibly dementia or Alzheimer’s but doctors aren’t concerned as yet, he’s had tests) Today I’m struggling. I stomped out of their house this morning in a two year old temper tantrum because mum wouldn’t ‘talk’ to me.

I gave up my job 70 miles away to come and help them get sorted but now I cannot see a time when I can go home. Dad doesn’t listen or read my notes. He doesn’t wash his hands before doing anything for her, she cannot get a tummy bug as she cannot vomit. He gave her 100mls of amoxicillin last week because he didn’t read the notes I left him. He asks her if she wants anything and when she says no, he doesn’t get her anything. If I’m there, I give her meals and she drinks most of them.

I’m constantly tired. Not sleeping well, waking up 3/4 times a night and waking for the day at 4:30/5 after going to sleep at around 1am or sleeping 10-12 solid, like a log.
I always have a headache and today I’ve hidden in various coffee shops and spent 4 hours sitting on a bench at Beachy Head, it’s my place to go when I’m feeling low as everyone worries about a crying person at Beach Head. I've had some lovely chats with strangers there and today was no exception. I’ve done a lot of crying. I just don’t know how to go on.

callaird it sounds like you can't go on. You body and mind are telling you this, as it sounds like you are at breaking point. It is time to step back and protect your own well being as it is impossible for you to look after both parents and their needs.

I think I would start with their GP and ask for them to be referred to whatever agency the GP thinks appropriate. And I always say, try to get your ducks in a row with Attendance Allowance, POA, etc.

@Callaird If your dad has potential dementia then he really cannot be relied upon. It sounds like despite having given up so much that you need extra care put in place. Try adult social services for advice or the health professionals involved in your mum's healthcare. You can apply for attendance allowance and send off for Power of attorney. Remember the rule. You get your own oxygen mask first before helping others.

caillard you talk about Beachy Head, so I am guessing East Kent? Kent County Council adult social services are actually pretty good - call them first thing in the morning and demand help NOW. Tell them you are unable to do any more, explain the situation, cry down the phone if need be, but please get some help ASAP. There is an emergency number so you could even do it now? I did read your thread, and am so sorry.

@callaird it sounds as if you have reached burnout. Two parents with severe neurological disorders are too much for any one person to manage. You have been trying to bolster them up in a situation which is unsustainable. I hope I am not suggesting things you have done already but you need to get outside help. You can self refer to social services.
The words to use are “ vulnerable adults” and “ carer breakdown”. At the very least they need carers to come in daily and take charge of stuff like medication and take the heat off you, but really they probably both need to be in homes where they will get consistent and safe care.
Finances can be looked at in due course but for now please ring your local social services as soon as you can.

@Piglet208- get your own oxygen on first. Spot on. You can’t help them if you are on your knees.

Callaird you sound amazing and at breaking point. This cannot continue because you will all suffer. Go to the GP ASAP and break down on them...not on Beachy Head

What whataboutbob said. Call adult social services and tell them the three of you are in crisis. Ultimately in your position I’d have some questions about money etc (I imagine your mum’s care would be nhs/medical in nature so funded? whereas dementia care is generally not) but the crucial thing is to get them some urgent help and get yourself patched up (see your gp if at all poss). Is any of what we’re saying helping/making sense?

Thanks all.

Not in Kent but Hampshire, I called adult social services on Friday, I did cry a bit on the phone. They phoned this afternoon and mum will be getting carers coming twice a day from Wednesday.

Mum is with the Wessex neurology centre and Clare has done a sterling job. She has OT, PT, SALT, community nurses and palliative care in place. GP has also been amazing. As has MND Association. They have all been marvellous. Can’t fault them.

My brother and I are already sorting POA.

They both have attendance allowance, mum at top level, Dad at lower level.

Mum has a living will and we have medicines in place for end of life and palliative carers coming in bi weekly to check on her. She also has told everyone involved that she has a DNR letter, it’s pinned to the notice board by the front door with directions where to find the medication for end of life.

We have a key safe and all teams, GP, ambulance service and police have the code (which I hate!)

Mum will not go into a care home. She is adamant. We’ve talked about and looked at assisted living but she refuses point blank to pay the £22k a year service charges that they require in their area. I think Dad would be happy to go to assisted living. He’s far more sociable than mum. He also will only do what she agrees to! He would never do anything against her wishes.

I’ve been in touch with the MNDA and mums area visitor will sort out someone for me to talk to.

It’s all just constant! When I’m there I’m doing loads of things for them. When I’m not there, I’m thinking about them and worry about them. I worry about going back to work, which I will have to do soon as I cannot live on air, but what will happen to them?!

It’s all too hard. Thank you are for being so kind.

Hi callaird it sounds like you have already accomplished loads and you should give yourself credit. I’ve been on this journey with my dad who had Alzheimer’s, a particularly agitated and at times aggressive form. Sometimes all you can do is your best at the time and accept when things don’t work out as you hope. It means constantly adapting to change and going into battle again to mop up whatever the illness throws at you, it’s exhausting. At the same time you are grieving for your parents, who just aren’t up to the role anymore.
Do you live nearish to your parents? Any chance they can go into respite for a week or so to give you a break? Your mum might not like the idea but you really need some time out.

See callaird I told you on the other thread you were doing a great job Honestly you should be proud. I’d echo the point about respite. You need a proper breathing space. Might your mum go for it if she felt it was only temporary?

callaird just to say welcome, and glad you made it over here.

Callaird, I feel for you

I'm sorry I don't have any advice but always here to listen.

thanks to all for tips re mum. I live about 90 mins - 2 hours away by Tube/train etc so can't take paperwork away. I think I just have to wait for her to calm down a bit.

I have come back to the flat for a couple of hours, just to collect funeral clothes etc but I could tell she was very anxious about being alone without me. I am thinking it's only a week since Dad died so that's natural I guess?

it is reassuring to hear about women who gained independence after a lifetime of letting husbands do everything. She is 80 - not sure if that's too old. I have been doing everything round the house but yesterday said I was too tired to do the laundry and would do it later - she did it, actually, so I must be conscious of the whole "use it or lose it" thing.

there's not really anyone else who can help out. I should maybe add my mum is of Indian origin and arguably, there's a cultural element of what's expected of a widow - almost falling apart! She has family in India. There are some good friends around who will help in a crisis, but certainly no one that she would ask for help with finance apart from me.

however, I hope she won't be vulnerable to any scammers as she's not likely to part with any cash before asking me.

Hi Grace my mum was the same when my dad died - I was shocked at just how clueless she was about paying bills etc and had to teach her. However, I think the advice you have been given about getting everything set up online with DDs etc is sound - it means that you only have to do it once, and not have to do it should your mum's capacity go as she gets older.

Just be careful about your boundaries when it comes to how much time you are going to be spending staying with her. I know that different cultures do this differently, so I know how hardfaced this sounds, but make sure your needs are met as well - you are also grieving.

Thank you all for your kind words and information on things I can do for mum and dad.

I spoke to mum this afternoon. I apologised, she apologised. And we had a nice long chat. I’ve told her that for my own health I’m taking a step back but that I’m always the other end of the phone, obviously she can’t talk but I’ve shown her how to send an iMessage from her iPad and told her to practice lots. That if she’s having a bad day, she is to let me know and I can do other things and pop by later on rather than sitting on the sofa on my phone while she watches crap tv. If she wants some company then I would go over.

I met mum’s MND Association visitor for coffee today and she’s booked me into see a counsellor on Friday. I went to see mums GP today as well, she was lovely and I took up far too much of her time. She’s given me some anti anxiety tablets but the side effects are terrifying!

I feel better just talking honestly to you and the professionals. It’s so hard to say that I can’t help her anymore. I feel like I’m giving up on her.

Thank you all again for making me see it from both sides and not hating me!