Absolutely horrendous situation; pity party here.

[idontknowhowtomanageitall]

I’ll be honest, I’m just feeling really alone and very sorry for myself tonight

In June, DH was diagnosed with stage IV cancer after months of steadily increasing pain. We have a three year old (then two) and a five year old. It’s fair to say I’d always been the ‘default’ parent like a lot of mums I suppose but as DHs pain levels increased I found I was doing more and more.

I am now a carer to DH as well as managing the (very extensive!) needs of two young children and I am absolutely exhausted and burnt out. I have lost my temper twice with the children today because they are so full on. I feel like all day they have just been shouting at me - instant mummy, mummy, mummy. Three year old has started a ‘game’ where she wants me to be her and she is me - this game involves saying ‘mummy you Sophie’ (name changed for privacy although I’m probably very identifiable anyway!) and I reply yes mummy I’m Sophie. That went on for two hours this morning and I was nearly sobbing by the end of it. In between that my five year old has a constant constant CONSTANT barrage of questions ‘who is that? Why is he there? Why’s his coat black? Why’s he got a dog? What’s the dogs name?’ Yes, I can and regularly do ask him to knock it off (obviously in slightly more eloquent language!) but he generally stops for all of thirty seconds and then starts again.

At home I’m on a neverending cycle of putting things away, cooking, keeping on top of the laundry, breaking up squabbles, putting dishes away, getting DH drinks and lunch, getting the children food and drinks, it’s relentless. The children just won’t leave DH alone, he’s in a lot of pain, so it’s generally easier to be out of the house with them but then they get no downtime and I’m aware this affects behaviour.

I know they are suffering too as is DH And I want to be so compassionate and understanding and I am deep down but it’s sometimes buried under this layer of exhaustion and irritation. They are constantly trying to climb on me, lean on me, grab hold of me; I find it so suffocating, especially combined with the endless questions and silliness. The simplest of requests are ignored, like please don’t throw cushions off the sofa onto the floor. I know it takes seconds to pick them up but it feels like they are just trying to be difficult which I know isn’t the case.

I am barely holding it together some days and this is one of them.

Ahh @idontknowhowtomanageitall I remember your other thread and often think of you ❤️❤️

I am so so sorry you are going through this. Be as kind and forgiving to yourself and your children and your husband as you can.
This too will pass.

We don’t have close family who can help @TheBlueKoala ; it would be good if people could accept what I’m saying.

I totally get the help and managing offers of help just being another job that's on you to sort.

Also it's not a competition so definitely don't do the "I get more breaks than many others" thing... you don't have to be grateful/make yourself small/increase the guilt because someone, somewhere might be worse off. Tbh you don't get a break from this being your life, and honestly it's shit and unfair and unrelenting.

From this outsider's perspective: you are being incredibly present for your children and so mindful and thoughtful about the impact this is having on them and that is SUCH a huge investment in not just their current experience but also their future wellbeing. The impact on you is obviously huge and again, no solutions just talk if it helps.

Where abouts are you roughly there maybe someone local on here that could help? (I live between Surrey and Kent and would happily help with the kids, am a respite foster carer and Dr by background)

I'd try to outsource all you can - meal delivery or cook ready meals, cleaner

Make tidying a game for the kids - how many toys can u collect before the timer goes off

Contact social services they've often got options available- and charities, I volunteer with a local youth club that is free and keeps kids occupied and give them a snack after school etc

Hugs x

It is not too much to ask others to take your children to give you a break - they can say no of course - but you absolutely need to ask. Even if it’s just one of them for an hour every week that could be helpful

Here’s some specific ideas but you will need to get over your reluctance to ask - time to push past the uncomfortable feelings and start getting some help for you and the kids:

Can someone take a basket of laundry away and return it washed and ironed
Deliver a ready made home cooked meal you just microwave / add pasta
Pick up a click and collect shop for you.
Help you with your kids in the house whilst you crack on with some jobs
Have you and kids over for dinner / downtime so you all watch a film or something whilst they sort dinner and DH can rest in peace
Cut the grass / basic garden tidy up
Clean bathrooms and change the beds
Meal plan and put online shop together for you to finish off and check out

The lack of downtime seems to be a big issue so I’d be asking people to provide a haven for you 3 to come and watch a film / chill out for a few hours and tell them you don’t need hosting or entertaining just time to recharge. Can you leave DH with food / drinks / meds for a few hours?

I think for your own sanity and for the future, it would be good to try and integrate a nanny into family life. It can be for minimal time each week and you can also be in the house but it would be good to have a reliable, trusted adult (other than parents or favours from family/friends) in place for the kids.

I think when things are tough, even just an hour of breathing space can help you recalibrate. Or help cooking a meal or packing school bags or tidying up. If you can afford a little bit of help, I think it would make a world of difference.

Once you can get regular breaks and lighten your day to day load you will feel much calmer and more tolerant and happier. That will in turn lift the mood and make everyone more relaxed.

Yes, it’s extra work to start with but it’s really really worth investing the time now so that it can pay off.

Whatever it is you feel would help most, give the Carers UK helpline a call.

https://www.carersuk.org

0808 808 7777

They put me in touch with a local organisation for carers who helped a lot when I was in a similarish situation. 💐

It likely won’t be attendance allowance, but PIP. OP says they have young children so likely DH is of working age. Unlike AA, PIP carries a mobility component too, so can be worth up to £195 per week. The daily living component is fast tracked automatically if life expectancy is 12 months or less. The mobility component is awarded according to assessed need but it sounds as though DH would qualify for some level of award.

OP doesn’t need to complete the application form if her DH's doctor will complete the fast track form SR1. It’s sent directly to DWP by the doctor and OP then rings the PIP claim line on 0800 917 2222 to advise them that DH is claiming under the special rules. They will do the rest.

do you have mcmillan nurses who visit?

Your nerves are understandably jagged in your current situation and the idea of trying to organise or cope with one more thing must be sending you close to the edge.

This is a truly shitty and awful situation and no one can make it better BUT I guarantee if you sent a note like this out to your closest friend someone would respond.

Hi All,
Idont here, I won’t go into our situation, you know what is happening, but I have an ask. We need a dig out at weekend or over holidays. Someone to take the kids out for a bit as understandably it’s difficult to have them and DH in the house for long periods and I need to be there for DH as much as possible.
People are well intentioned but I just can’t cope with the admin and the organisation, could you maybe co ordinate a few people do help over the next few weeks. It’s a lot to ask I know but I am drowning a bit here.

Xxxx

If my friend sent this I would spring into action and have a rota fairly quickly. It would give you some breathing space with no admin.

I just wanted to send some virtual support - the emotional load of what you are dealing with is huge, you must be beyond exhausted.

Be gentle with yourself, shouting at the kids occasionally, feeling cross with your DH and feeling scared for the future are all totally normal responses to an completely non-normal situation and you shouldn't beat yourself up about any of it. You are one person, trying to be many.

You need help - childminder, grandparents, nanny, babysitter, carer - you cannot continue alone and you also deserve some peace amidst this all. Big hug for you xx

Do you have a homestart charity nearby? They can assist with under 5s it's a volunteer and whilst it's not masses of hours they generally play, assist etc.
https://www.home-start.org.uk/

You would qualify as a child under 5 I know HV can do urgent referrals but if they are in your area they might be able to give you some rest bite for a little bit of time.

The other one is contacting Clan they have a lot of info but also children specific elements/groups when a parent has a terminal diagnosis.

None of the above is going to solve it but it's about getting a bit of support where you can. As bad as it sounds as well do you have children's tablets? It's not ideal but can give you a bit of rest bite in the house especially when worn with headphones. I'm not meaning to put them on all hours of the day but maybe 30 mins might give you a bit of decompress time.

@Cerisequeen this is perfect

OP, I understand what you’re saying about the admin load of getting help with the kids. But I don’t think you’ve answered the question of whether you can get support to help with anything else so at least you’re ’only’ dealing with DH and the kids.

eg do you have a cleaner/can you afford one? Can friends bring meals round or do other basic chores for you? All of those things would require much less mental load that you having to sort people taking kids out.

I am so sorry. Would a temporary day nanny/housekeeper help? You could ask them to do all the child-related admin - preparing uniform, washing clothes, tidying their rooms, keeping on top of school emails, making sure they had the right things for school/nursery events that week, and ensuring you all had nutritious meals. If you were to tell a well-established agency your situation, I am sure they could find you someone that would help. It would not be cheap - up to £350 per day but it would take the pressure of you massively. Here is the contact for Norland - the most expensive - there will be others: https://www.norland.ac.uk/salaries-fees/

Does your husband need carers? This can be done, through CHC (NHS-funded care) I expect your husband would meet eligibility at this stage of his cancer battle.

I know it's not nice having strangers come into your home, but they may be able take some pressure of you? give your husband a meal, drink and support him with dressing etc if needed?

We all snap at our kids even in the best of times, and you are not in the best of times! Give them a big cuddle, they will forget and move on.

I’m very sorry to hear about your situation. My only advice would be to give yourself some grace. Let standards slip. Sounds like you’re a very engaged mum. It’s highly commendable but in your situation I absolutely would not have the headspace to spend two hours playing a make belief game with my daughter. Maybe 20 mins but that’s about it. Do whatever it takes to make your life easier. Put on a movie (or several) for the kids whilst you get on with something else or have a moment to relax, cook scrambled eggs for dinner, use paper plates etc. I know it’s obvious but you don’t have to be the most perfect version of yourself right now. I bribed my children a lot with low sugar hot chocolate when I was 7 months pregnant and DH was stuck abroad during Covid.

All the best x

Honestly, I felt like I was going to go mad on many occasions when my kids were those exact ages, and I was only dealing with normal day to day stuff, so I think you are doing amazing and hard as it is, you should give yourself a huge amount of credit. 💐

I know you have said that someone helping with the kids is hard to arrange and/or not feasible, so feel free to ignore: perhaps there is a young teen in your friend circle or neighbourhood who could be recruited for a nominal fee (or out of the kindness of their heart) to come play with your kids now and then so that you can sit in a quiet room with a cuppa for half an hour, or whatever else you want or need to do. Kids this age take up literally every bit of brain space!

Op i just wanted to say it seems to me youre doing an incredible job.

I get the people saying be direct when others offer help, it is hard though when you know they're prob only saying it because, well, its what you say to someone in your position isnt it? And whatever they do would only be the equivalent of putting a plaster on a 7 inch wound.

Please go easy on yourself. I also wish I knew you IRL so I could help. Hugs to you all xxxxx

OP, you need to lower your standards for awhile, if the cushions are on the floor, leave them on the floor, if the dishes need done, do them once a day, not three or four times. Batch cook and microwave, make easy meals. Ask for help from extended family. Be present for the children and your dh, and take time for yourself. These are the most important things right now xx

I have no advice I’m afraid but my heart goes out to you.

I’m not in your position but I do care for my terminally ill mum and have done so for the last 6 years. People say kind things and offer to help but when it comes down to the crunch they are nowhere to be seen or the novelty soon wears off. The same with organisations, their tv and radio ads will make them sound as though they are available 24/7 but again they often only offer the basics and in our area there is little support for mum’s illness.

And for those suggesting you employ home help, child minders etc are either very wealthy or have zero idea how much these things cost (mum’s carers come in for less than 2 hours per day and it’s costing almost £4k per month).

I hope this week is a little easier for you with the dc being at school/pre school