Advice on how to survive this please

[howareyoumeanttochoose]

First post so apologies in advance if I get this all wrong. I need some help and I’m really struggling. I’ll try and keep it brief. I am an only child, my parents have never had a ‘good’ relationship but have been married over 50 years. My whole life I have been in the middle of their conflicts and have always tried to diffuse arguments and calm them down.

Last year my father was taken into hospital where they discovered cancer. Due to many complications he spent 9 weeks there including time in ICU. He then developed delirium which was horrific as he often didn’t recognise us, could be abusive, said the most awful things. Eventually he was discharged and came home.

He is now on palliative care at home. My mum is really struggling with his care and struggling to manage his very variable moods. They are together 24/7 and both are finding this difficult. He is mostly lucid but has periods of confusion bought on by infections and the vast array of medication he is taking. Their arguments are getting worse particularly as Mum cannot help but correct him and often reminds him of mistakes he’s made when confused. It is then up to me to intervene and calm them both down.

On top of this I have 4 children of my own. The youngest has only just turned 2 and obviously still needs a lot of time and attention. My poor DC are suffering too as nothing can be planned as we never know when the phone will ring and I will have to disappear to try and sort things out. We haven’t been further than 30 minutes away from home for a year in case we are called back. They are also finding it very hard to see Grandad so poorly as he was always very involved in their lives, I am obviously also finding the thought of losing him heartbreaking and to be honest I miss my dad - this version is like having 60% of him still here. My husband is amazing and very supportive (though he gets intensely frustrated with my parents and their disfunctional relationship) and he is trying desperately to pick up the slack with the children as well as juggling work.

I am totally broken both emotionally and physically. Trying to care for my children who I love beyond words and suffer through this awful time with my parents has destroyed me. I fantasise about killing myself constantly and if it weren’t for my children I would have done it a long time ago. The GP has prescribed me with antidepressants but I can’t face taking them as the thought feeling worse for a couple of weeks before the kick in and I am also still feeding my youngest and would worry about the affect they might have on him.

I’m sorry this is so long (I haven’t even included half of it!) and thank you for reading. I don’t know what I’m hoping for really...

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.

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.

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.

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

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.

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.

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.

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.

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

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?

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.

Hi everyone, I’m still here and still listening. I desperately want to find a better way through this, @Haworthia said that she watched her mum destroy herself caring for a parent and I really worry that could be my children’s memory of this time too.

Being an only child does complicate things. My mum is an only child too and my dad has fallen out with his siblings so there is very little family support at all. This is something I feel quite resentful of as I do think that they could have worked harder to maintain links with family who might have been able to offer me some support. As it is there is literally nobody else to help them or even to spend some time with them so that I can have a break.

Another huge issue for me is the fear that if I do take a break or try to plan something with the children I won’t be there if there is a big emergency or he takes a sudden turn. 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. Sorry I’m rambling now...!

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.

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?

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.

“ 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.

We actually only live a few minutes away from each other. I’m not sure if that’s a blessing or a curse but obviously they know I can be with them immediately. I do a lot of shopping and general errands for them which is manageable, the parts that stress me out are that if they argue, which they do most days, one of them will call to complain about the other, then the other one will call to give their side. Often if it’s a bad argument, or to try and diffuse the situation before my dad gets agitated I’ll then go round there to try and calm them down, sometimes my husband even has to get involved before they sort things out. If there’s an issue with dad’s medication my mum will panic and I then have to ring the doctors or pharmacy to sort it out.

On average I probably spend between 1 -2 hours visiting them a day and probably speak to them around 10 times. When there’s an issue it can be double that. I genuinely don’t know if that’s to be expected given the situation and feel incredibly guilty complaining about it as I know I should just be glad that he is still with us.

OP “ On average I probably spend between 1 -2 hours visiting them a day and probably speak to them around 10 times. ”

Am I right in thinking this could go on for months? I’m going to say that’s probably too often if that’s the case. My father’s situation was complicated and I was there almost every day, but a big difference is that I don’t have children and had taken redundancy. It could have gone on for months but in that case, I’d have stepped back. It was clear to me he was dying long before the doctors admitted it so it was a bit different than if they’d said “he’s got six months”.

As it is, I still wish I’d spent less time there.

There is only so much you can do
You have to take care of your own health and help your mum too.
Please check out local care teams, any respite centres. Day care centres.
Please, it’s honestly changed our lives. I know you think your Dad wouldn’t like it, but it is amazing what they get used to. He would be very well looked after.
The way I look at it is, they are the professionals, they do it for a living. We’re just trying to do our best and completely over invested emotionally.

I'd organise food delivery for them, that's one task less. And tbh I'd not answer a few calls, you can't keep that up. They chose to live together and keep arguing with each other and it's not your responsibility.
Sadly I think you just needed to offload, which I fully appreciate but you don't sound like you're in a place to back off slightly.
Sending you some peace.

It sounds incredibly hard OP. I can imagine my mother bring a bit like that with my father - she can’t ever let a mistake go uncorrected.

What I wanted to say is going to sound quite harsh. Everyone dies. Your father, and mine, and everyone else’s is going to die at some point. If you can make peace with the concept of that, then maybe you will be able to stop holding it over yourself as a threat or a stick to keep you in line. The fact that your father will die at some point is not a reason to sacrifice your own mental health. It’s a fact, it’s going to happen as sure as the world will keep turning and time will keep moving on.

Looking from the outside, you seem to be so deeply enmeshed in your parents and their relationship. Living so close by, sorting out their arguments for them, responding instantly every time they click their fingers. And, again from the outside, it looks like it all is connected: your being an only child, choosing to live so near to your parents, suffering from depression, guilt, anxiety and still playing out the same old patterns of behaviour at the expense of your own - and your family’s- well being. Have you ever seen a therapist? I hope you can step back and find some peace.

And this with 4 children, one of whom is only 2...most people would be having some support from their parents with the little ones rather than having to support the parents so much,

OP have they always been like this, relying on you to sort them out since you were young? It is called parentification- where the parents treat their child like a parent. the child (or even adult child) gets leaned on too much at the same time as not being given the support most children get growing up.

It can then be seen as 'normal' when it's not. Your DH sees it is not normal and gets frustrated with it.

Most parents would see you have young children and not lean on you like this, even in an illness situation, that is so much time every day no wonder you are feeling like you are. And I'd worry about how this is affecting your DC also.

There's a good site online called Out of the FOG. FOG is fear, obligation and guilt. Also maybe look at 'adult child of divorce' although yours are not, they seem full of conflict.

And then as an only, you don't have anyone to share it with either or give perspective on it.

When you say you go in and sort out their conflict do they call and ask you to do that or do you go anyway? As breaking doing that might help a bit, some boundaries in place.

Because there is a thing called 'enabling' which is where they get used to you sorting things out for them and never learn to deal with it themselves.

Also a simple thing could be online shopping if you are doing shopping and taking it round, might give you a bit of a break from seeing them constantly perhaps.

I genuinely don’t know if that’s to be expected given the situation

No, I don't think it is. We also have a terminally ill close relative and don;t see them very often, bit as they want to, and they go out and have therapies, etc...and feel incredibly guilty complaining about it - see FOG above

Oh JESUS 2 hours a day and 10 calls? With three kids including a 2 year old? That's absolutely insane. No wonder they 'don't need carers' they have one!

I'm sitting thinking how on earth to improve this. But I can't see a way. They have totally lost track of any reasonable level of input from you.

Therefore you are going to have to set your own level and stick to it. And that's going to mean a crisis, probably a big one.

I would ring the community palliative care nurse, say that you are going to have to pull back and it may mean a change in how they manage, and start a new regime perhaps the day before the nurse plans to visit. And that's going to be hard - warn your parents you need to 'go away' and don't answer ANY calls from them for 48 straight hours. Then go back to a level you can live with. Maybe one call a day in the morning? One single errand or visit every other day?