Advice on how to survive this please

“ unless you live next door or move in for the foreseeable future you might not make it there in time.”

Even then, mate of mine cared for his father at home. He died when my mate went for a smoke. A lot of people want to die alone. I actually wonder if the dad was thinking “isn’t xx due his fag now” so he could die!

Dad died at 1am, I wasn’t there, I was with mum, it’s okay. Even mum thinks he needed the room to be empty.

Being harsh people can die very quickly, unless you live next door or move in for the foreseeable future you might not make it there in time. You have to come to terms that that was ok.
I was in London on holiday when my dad died out of the blue, it took a while to accept that it was ok for me to be away. Nothing changed because of it etc.

OP “ His condition and day to day health seem to fluctuate so wildly. I’m so scared that I won’t be able to be there if he needed me and that I would have to live with the guilt of that forever.”

When you say “be there” how far away would be? For me it was aboit 2 hours when I occasionally wandered back to my own home.

I’m effectively an only child, not officially, but, you know.....so I do get it, but what I’d say is, while I totally get wanting to be there for a turn, there are limited things you can do if you’re within what YOU consider acceptable travel time. For me that was going home occasionally, as opposed to parents home. For some, it might be going to France.

I did get one call when I was home and he needed me in the emotional sense so I rushed over but was able to reassure him I’d be there and tbh, in that state of consciousness, two hours could be two minutes or vice versa.

I think the only child bit is the hardest, I’ve had a few people tell me their siblings were a great help. I talked to the local vicar, am an atheist but he has lots of experience with these patients and made me feel human instead of guilty.

Also please take the pills. I’m permanently on them but have a lot of experience with different ones. You might get a few of the side effects yes, but you might get none at all. Even with the headaches and dingy tummy etc I went to work. I think side effects pass quickly for most people?

I'm so sorry. This is based on me working in palliative care, though only on the edges.

What do they call you about - what tasks?

Your dad may not need or want support but your mum definitely does. Get carers based on what she says she needs. Your child is 2. If she were thinking straight she would never let you be so burdened. Let your dad turn them away if he must, it will tell the team a lot about what is going on.

Your parents have had a crap relationship for 50 years - nothing you do, say or dont do is going to affect that, and it is their problem, not yours. If they ever made you think it was your problem, they are wrong.

Can you talk to the community palliative care nurse? Just google the team for your area. Let them know how much you are doing and how much you are struggling. It helps them make decisions.

Please start the antidepressants. Please. I lost my husband to suicide. Please, please take them - you deserve a life you can bear, truly, and it won't always be like this, there are better days ahead. Depression wants to grow, it wants you not to take them. Your children and your husband love you, they dont want you to be depressed and the meds could help.

Hi OP,

Further to my initial post I've spoken to my mother who (as an only child) faced a similar situation after my GF had a stroke.

It's a slightly different situation insofar my GP's had a very loving relationship prior to his stroke, but sadly he never fully recovered physically (total arm paralysis/partial leg paralysis on his left side) but worse his brain injury utterly changed his personality.

He suffered periods of confusion like your DF but in addition was prone (having previously been a kind, gentle patient man) to violent outbursts/tantrums.

The toll was immense on my DM as he would not countenance being helped by careers and my GM felt it was her (and my DM's) duty to care for him.

So that's the background.

Advice from my DM.

• irrespective of what your parents say they want, get support in as soon as possible - careers to help during the day, food deliveries and arrange respite care to give everyone a break. Access any and all support you can - Age Concern were very helpful wrt how to access support so it's worth speaking to them.

• put yourself first. If you collapse under the strain it doesn't help anyone. Be realistic about what (with a family of your own/work) you can do.

• be pragmatic about what your parents need rather than what they say they want. Don't be emotionally bullied.

• don't feel guilty about saying no. As soon as you do you'll feel an obligation to say "yes" all the time. You need to have boundaries for your own physical and mental health.

Can they afford carers? My in-laws were dreadful with each other and one thing we suggested latterly was a housekeeper type person plus someone to offer semi medical care. They could easily have afforded it but were very resistant to change. Just FIL left now. Still loaded, still moaning and not prepared to do anything about it. I think you have to note when you’ve done enough and leave them to it. If you’ve got young children your parents can’t even be that old can they? 60s? Early 70s?

The parents need to step up and ask for help if they need it really.

All that stuff is a lot of mental load for the OP though. Could signpost the parents to somewhere to deal with all of that. OP can't deal with all that in her mental state.

E.g. local welfare place for AA visit, Age UK can advise them. they have mental capacity to set up food delivery etc.

Make sure they are getting all the benefits such as attendance allowance they are entitled to.
Some areas have befriended schemes where dbs checked volunteers will sit with someone for a few hours each week to give family members a break.
There is daycare for elderly people, sometimes council run, sometimes run by care homes. Similar fees to nursery fees and if you ask they will often bath them as well. Usually take them 9-4 and feed them.
Carers can be organised to come in a few times a day.
If you and your mum need a break there’s always respite care most care homes will offer this and then 2or 3 days of daycare per week after that would make a massive difference.
He could go into respite care for a week and you could have a holiday. In families where they are siblings you just pass the oldie round but that option isn’t available to you.
If cooking is an issue Wiltshire farm foods or similar.
It’s very very hard, I’ve been there and totally understand you don’t want to abandon them in their hour of need. But do look at the different options which can lighten the load.

The OP has already said she’s an only child.

I understand the dysfunctional relationship completely. My ILs are like this and I could well imagine MIL correcting FIL and telling him all about episodes of confusion

It’s true that you need to save yourself here. I watched my Mum nearly destroy her health when trying to care for her ailing parents, and then her Mum with dementia when her Dad died. In the end you have to protect yourself and call in outside help even though you know they won’t like it. Is there someone with the palliative care team you can be honest with? Social services can also come and do an assessment of care needs.

OP I have MH problems also and I know if I start feelings or suicidal ideation it is like I need to escape, the feeling life can't go on like this...it is often a sing for me that i am overwhelmed, and your life sounds overwhelming also. What I do is try not to be scared by these thoughts or feelings and I see them as a sign I need to step back and focus on myself. It is very true that we can't pour from an empty cup.

I guess what i am saying is don't feel bad for having such thoughts, they are just that, just thoughts and might be as you are feeling totally overwhelmed.

Apologies - I see that you are an only child. Do you have family near by?

OP are you an only child? And if not then why are your siblings not helping?
I'd advise speaking to the GP surgery about your local carer support group. Not only do they have meetings for Carers but they offer respite support for you and the one here sends out cards which entitles you to feel hospital parking etc - little things which just make an already difficult life easier.
Please see if you can think of another family member of friend who could be on call for a day while you and your family have a day away too - it sounds like you really need a break.

OP, you've had much support on this thread but remember this; you cannot pour from an empty cup. Take the medication and spend some time with your husband and children having fun.

Will there come a time where your dh steps in when he sees what this is doing to you.

It's not ok that your dad refuses help when it's impacting on all of you so badly.

antidepressants but I can’t face taking them as the thought feeling worse for a couple of weeks before the kick in Talk to you GP again. My experience is they didn't kick in for a couple of weeks, but they didn't make me feel any worse, it was just that they didn't immediately make me feel better. I was warned about the slow kick-in so that I wouldn't get disheartened that there wasn't a miraculous improvement in mood the instant I started taking them.

Antidepressants don't cure depression, but they get you to a state where you have enough mental energy to deal with things.

This was a situation I was dreading with my Mum and Dad but events overtook us and my Dad was admitted to hospital for palliative care. More recently, the relationship between my Mum and brother ( lived together, long story) began to fall apart. I phoned their GP and expressed my grave concerns about their mental well-being, although he couldn’t discuss their situation with me, he obviously listened and took action without letting on that we had had a conversation. Do you think your Mum and Dad would take advice from their GP and at least accept carers or respite care to give everyone a break if the doctor said they must?
Stay with us, this is a really supportive group and you must take care of yourself and your family first

Yes, I have a feeling OP might say that her father chose to stay at home for palliative care, I lived in terror of that happening!

Why isn’t your dad in palliative care in a hospital or hospice, is it lack of space?

You're confusing palliative care with end of life care. Palliative treatment can go on for years. My husband was palliative for 18 months before he died. End of life and hospice at home was only available/necessary for the last few weeks @Orangeblossom78

Why isn’t your dad in palliative care in a hospital or hospice

Because demand these days is such that you only get a place when they calculate that you only have a v shirt time left. .

But some do do short respite stays.

OP, the whole situation is heartbreaking.

Firstly, is your Dad getting help from visiting carers? There should be 4 visits a day to help wash him etc.

Is there a Macmillan Nurse or similar who can help with this? A Macmillan nurse will be experienced in the mood and relationship changes that can happen.

It is then up to me to intervene and calm them both down
This has been your role, imposed on you and adopted by you all your life. But it really isn’t down to you. You are all caught in a chain reaction. Can you say to your Mum “we are all
Under pressure. I will come for our regular visits and if there is a medical crisis but I can’t leave my 2 year old to sort out how you and Dad talk to each other. I know it is difficult but try not to correct him because he can’t help eat his brain does when he is delirious and it causes arguments. I cannot keep coming because if these upsets do it will be best to stop them before thy happen “

Then refuse to go. And if you visit say “I can’t comment on things you discuss between you” and walk away to make a cup of tea or whatever.

I do know it is hard, I had to take a similar line with my parents.

Can he go into a hospice for stays of respite care?

Sorry, hungover!

Stay out of rows between your folks. Luckily my dad was in hospital so I would often swap in and out within, I’m sure some of their conversations would have been unbearable to hear.