Care Advice - I am at rock bottom

[FlatOutAgain]

Hi,

I am on holiday this week with my DH (in the UK). We left on Friday but popped around to Mum's before we left. She was in a state and Dad said it was because we were going on holiday.

A bit of background. They are both in their 80s my mum is currently being assessed for Dementia (waiting for the scan after being at the memory clinic) and Dad has lots of physical issues as well as his own cognitive decline. Mum is obsessed with her health. She has absolutely no physical health issues at all and at the memory clinic they put her on sertraline to help calm her down. She has a history of calling out ambulances and health care professionals only to be told she is fine. Just had a phone call from my sister who lives 2 hrs from Mum and Dad which is why I end up being the main carer as I live 15 mins away. Mum has called out 4 to 5 health care people including the GP and two ambulances. There is nothing at all wrong with her. It seems that me being on holiday has sent into a crash as I am not there. I feel like giving up and crying given that I can't even take a holiday.

My sister said she will go to see them tomorrow (she has not been down for 6 months) and we will go home on Saturday.

I can't go on like this as it is relentless and my Dad does not have the ability to cope at all. Mum was taken to hospital and Dad did not want her to stay there so now on return to home she has gone to bed and refuses to get up.

Could anyone please advise me on home care and if what services can be provided for mum. I don't really mean a cleaner/washer/cook etc. but is there a service that turns up and chats about health and reassures her she is fine. She craves this every single day. She has to be told she is ok and this means she calms down until the next day when it all starts up again.

I honestly would be grateful for any crumb of comfort that there is some help of some kind out there.

Thank you (yes I am now in tears).

It's completely wrong of your sister to have rung you. Your Mum is physically OK and you don't need to leave early or rush to see her.

What does your Dad think? If you became so unwell that you couldn't visit, or if you moved abroad, what would have helpful for them both? Maybe a companion carer? A day centre?

Would your mum be happy to speak to someone over the phone? there are befriending services etc who could talk to your mum. Reagrding having someone come round, would that make a difference? when the carer left would your mum still be phoning services?

If your parents are self funding, you can contact the home care agencies yourself to arrange a care call (with your parent permission)

You poor thing. Please try and enjoy the last bit of your holiday. Has your m had a social services assessment? Got attendance allowance?
your county council should have details on their website of local providers of care- age uk is worth a look, also carers association. Some agencies may be able to offer some sort of befriending type care. Is there an admiral( dementia) nurse in the area?
come and join us in the cockroach cafe…. Lots of wisdom, and humour.

You need a social services care assessment for your parents. If you can, be there and tell them EXACTLY what’s been happening. Do not sugar coat it to make your mum or dad happy or seem less vulnerable. Speak to her GP and repywhat has happened and that you can no longer cope. The more on official files the better.
You may find your parents are entitled to some help, even if it’s just respite.
has your mum claimed attendance allowance? If not get it done! Money is money and will help pay for care/cleaner/sitter/gardener whatever make life easier for her and your dad.

You can purchase care privately via a care agency if you prefer. You can suggest to your dad he might like help with cleaning and go that route before going and getting carers in for example.

Age uk are brilliant - speak to them to see what’s available in your area and if you just need some one to talk to.

sorry to say, unless you make things happen, the circumstances are likely to only get worse, not really what you want to hear when it’s obvious you desperately need a break. - when your sister arrives either call a family meeting and make it clear things have to change or leave her to it and hope she wakes up to what you have to deal with daily.

As your mother is so insecure about her health, is this not in itself indicative that she has some kind of problem? Have you spoken to the GP, can he not suggest something to help her?
I hope things can improve to make life better for you.

Don’t go home early. Meant kindly, you will only be feeding her fears and reinforcing her behaviour.

You also need to put pressure on the GP to help manage her health anxiety.

Your sister also needs to step up. Couldn’t she phone each day to talk with your mother?

I am sorry you are going through this. It’s shit. But genuinely you need to make sure you are OK too. Get as much care in place for her as you can. As PP has already said, what if you yourself got sick? Get others caring for her, including her GP, so you can concentrate on maintaining your mother daughter relationship.

Oh and just to say- have they done power of attourney forms? Maybe too late if your mum doesn’t have capacity. Age uk or carers uk can help.

Thank you for the replies. We are going to go home tomorrow and will deal with things on Saturday. Yes you are right the moment the carer left we are back at square one. Mum won't use the phone apart from calling me. She said that no-one cares about her anymore. She is saying this because we are on holiday.

I just looked at an assessment and will get the ball rolling on Monday. I will also look at different care providers to see what can be done. Socially she won't really engage.

I should have foreseen this given the state she was in when we left her house. Dad can't cope at all and ends up shouting at her in frustration which of course makes things worse. I am not blaming him its just that he doesn't have the skills.

So my list will be 1. LA assessment 2. Local care providers 3. GP discussion.

I already have lasting PoA for both health and finance and have been managing both for quite some time already. I am incredibly fortunate that my Dh is great and gives me a huge amount of support but I can see even he was a bit fed up tonight as we are just trying to have a break. We have cancelled holidays in the recent past (two of them) but this was due to Dad's physical health.

Thanks again and if anyone has anything else I should add to my list then please please let me know

Pre covid Age uk did a befriending service for which you paid. Add them to the list to call. This isn’t care just a sitting/chatting/accompany to outside activities service. Care agencies tend to just do care - meals/meds/hygiene plus chit chat whilst doing them.

Good luck.

Please please if you have booked a holiday for longer you need to stay, if she continues to call healthcare providers she is likely to come to the GP's attention which supports your case.

You need the break you need someone else to step in and provide support, by going home early you give all the power back to your mum. Let your sister deal with it, she may not do it in the same way you would but she will do something... you ally really need to step back and give yourself a mental break limit calls from your sister too!

Thank you. The holiday is over as our conversation is now about mum only.

Thank you for the age uk friendship. I have taken a look and feel that Dad may benefit from it more than Mum.

Mum just becomes a child and wants reassurance and attention. Dad said that she was struggling more than normal as we were going on holiday.

Honestly even with a visiting carer I don't feel it will be a solution.

Waiting for the scan but again a diagnosis does not change anything for me and my understanding is that while Dad is at home and I live close by then the Local Authority won't do too much to help (I hope I am wrong). They are fortunate that for a while they can self fund but this is not limitless. I feel as if things are a bit hopeless. Mum has become withdrawn at times and does not know the day or month etc. I was hoping the ADs would help but it is still early days and I knew that as soon as the consultant said they may give you stomach ache it was only going one way. The GP had to attend as mum had severe stomach ache, last week she had a heart attack, the week before she wasn't able to breath and so on and so on.

Thank you and I will call Age UK

Some care agencies do social calls, befriending and trips out. Sometimes the carers use their own cars to take customers out. Would a nice trip out distract your mum from her health worries? Many carers wear blue uniforms and could be mistaken for a nurse, which might be helpful.

ooh, what about looking at attendance allowance? Again get help from cab/ age uk etc to complete but it would help fund some care. Not means tested.
please try and enjoy the rest of your holiday.

Thank you. I will add AA to the list. Good idea about a blue uniform it made me smile as mum would 100% think it was a nurse

I work as a private carer. I’ve had few clients where the care is booked for one person but it actually ends up being the spouse who is really in need of the company and reassurance.

If they can afford to get someone in for an hour a day then that could be set up first thing in a morning and built into her daily routine. Someone to help her get going for the day, make her tea and toast, but most importantly offer support and encouragement and just a listening ear for an hour.

The local authority will attempt to bully /rail road and guilt trip you into doing all the care. Because you are free - that is you don’t cost them a penny and the problem of your mum is no longer theirs. Keep repeating that no, you will not be continuing helping and they need to find an alternative solution. No, is a complete sentence when it comes to social services. Be very firm, very clear and polite.

Please don't take offence at any of these questions
A few things struck me

If it's not dementia..

Could she be acting out to get your attention specifically?

Have you really shown her how much it upsets you - even by putting on a fake crying fit if necessary. often the person who gets most upset wins the game - the prize being a few days peace.

Have you suggested to her that she goes on stronger meds than sertraline?

If it's affordable, then a carer to do her breakfast and be a companion for an hour or two first thing might help. If dementia is confirmed, then that will need to be a daily thing I think?

I do wonder if she's on enough Sertraline - how long has she been on it? Could the GP review the dosage? And is she definitely taking it?

You are incorrect, a load more help and support is available with a diagnosis, as you know it's non existant beforehand but many doors will open as soon as its confirmed. Not just for your mum but for family too.

We hired a private care firm for my dad and this is exactly what they did - popped round twice a week for an hour just to help him do his exercises and see how he was. It really helped give him some confidence back. They were £20 an hour, I think, if you can afford it.

Your sister also needs to step up No she doesn’t. She needs to do precisely what she’s willing to do. As do you.

my understanding is that while Dad is at home and I live close by then the Local Authority won't do too much to help They will assess her needs. Then they will look at what her husband and you are prepared to provide. So you need to say very loud and clear what you are happy to provide - bearing in mind they will take it as a commitment with no sick leave or holidays, so don’t be too generous! My experience was they were willing to accept what I wasn’t prepared to do, and not in the least condemnatory.

Dad said that she was struggling more than normal as we were going on holiday. He’s almost certainly correct. But that doesn’t mean you should avoid holidays. It means you should have more to get her used to them.Even from her point of view, you can’t help her if your mental health is shot. Can I suggest a series of short breaks in the Yorkshire Dales? Outside the villages the mobile reception is almost nonexistent 😉

Firstly, book another holiday. I am serious about this. You are entitled to have a life of your own that doesn't revolve around your parents. You are entitled to have some time away. If your mother/father doesn't think they can cope while you are a four hour flight away then they could consider a residential respite placement when you are away. It forces the issue of it being all you, all the time.

"Telephone befriender" is one of the services that might help. I know you said she doesn't use the phone but if she can phone you then it's "won't" not "can't". In person befriending is back again too so you might get lucky and find someone locally that will come in and chat with her. The local authority call alarm service might be an option too, you can press the button for a chat. If she does it 46 times a day that's not your problem. It's not your problem if she calls the ambulance twice a day, their life is a separate thing over there, it's not your life. Your parents may not see you as a separate entity but you are, you might need to read up on setting boundaries (in your copious free time, I know, I know)

Personally I would hold off the AA forms if she has a brain scan coming up because mum's diagnosis came with the forms for AA and a call from someone who offered to help me fill it in. It will be easier when the diagnosis is official.

The needs assessment is exactly that, an assessment of mum's needs. The next step is the services that are needed to meet those needs. If dear daughter lives round the corner and can do it all then there is nothing that social services need to provide. You need to consider what you are prepared to do and what you are not prepared to do over the long term. Carer burnout is a real thing, so many of us have been there. It's not surprising because paid carers get time off, training, holidays, equipment and family just soldier on. If you also lived two hours away then those assessed needs would be met with professional carers, as it stands you are the easy and cheap option. You are going to have to work on saying "no, I just can't do that any more" which should be easier if you think of your ruined holiday.

The issue is not just your mum but also your dad. He didn't want her to stay in hospital - was he prepared to deal with the consequences of that or was that always going to drop on you? He needs to also get the message that you are not going to be the solution to all their problems.

I've just done a needs assessment over the phone with my parents' local authority. They put me in touch with their recommended carers. They also gave me the name of a local befriending service (free), and a pendant alarm and have organised for an occupational health assessment.

Please look after yourself. Your sister shouldn't have called you.

OP you have DPs in your 80s so you can't be young.
You're entitled to go away in the UK for a week.
I don't know what the answer is, but please don't feel guilty about going away.

Whilst finding the right person isn't easy, the right cleaner/household help could be a good solution for now whilst you explore other options, a no nonsense type character who will tell your mum she's fine. Dp's mum has a lady in 3 times a week who cleans, does laundry, cooks a meal (with leftovers) and crucially, especially through covid, provides reassurance and has unfortunately picked her up off the floor a couple of times after overnight falls (she now has an alarm service). The right personality is crucial of course but it also means you don't need to help with cleaning etc