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Parenting

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Partner seriously ill after baby, feeling like a single parent

86 replies

SilverLemon · 17/05/2026 21:01

Me and my fiancé welcomed our first baby in August last year. I've had about 2-3 months at the beginning of feeling like a team parenting our daughter and I'm so exhausted.

He was a completely healthy man before my pregnancy and I thought so during it but looking back the first symptoms and signs were starting. I put them down to the life changes we were going through and his father becoming terminally ill during my pregnancy and ultimately passing away two weeks after our baby was born.

Towards the end of my pregnancy and first few months following our daughter's arrival he was complaining of dizziness and then his legs feeling heavy when walking. In November he suddenly couldn't urinate all day and needed a catheter. A few days later he was in hospital with sepsis and since then it's all been down hill.

Luckily the sepsis was caught quickly and there was no organ damage or time in ICU, he was in hospital for over a week. But once discharged all his symptoms just amplified tenfold and have continued to get progressively worse.

I have now become his carer and feel like a single parent raising our daughter. He now cannot walk unaided and uses a Zimmerframe, he has regular falls at home, has essentially become housebound, his speech has changed, I'm pretty certain he is depressed and he can't really do anything for himself due to his balance issues. He wants to lay in bed all day, is awake all night and asleep all day.

I was ok at the beginning, believed it was just stress and that it would get better soon. But it hasn't. Two further hospital stays and lots of testing and we're still none the wiser of what's causing his symptoms. We know it's something neurological and he's now been referred to a specialist hospital, which we're still waiting to hear from. The delays in getting care and support are something I could dedicate a whole post too.

I feel like a single parent. I do everything for my daughter. He can't parent her right now, the best he can do is sit with her whilst he's in bed or when he occasionally comes downstairs which gives me 30 minutes to an hour to catch up on household tasks. Otherwise I'm with her all day doing everything. I know he wishes he could do more and I see how much this hurts him.

I'm just so exhausted. Being everything for everyone for over 5 months now. This wasn't how it was meant to be. We were supposed to be a team and equal. He was supposed to take her to swimming lessons, make her meals now she's on solids, take her for walks in the pram. I was supposed to get some breaks. Some time to try and reclaim some of my identity back, some time to feel like a romantic couple. My maternity leave has just been overshadowed by his illness. I'm going back to work in 3 months time and there's just so much uncertainty.

I just can't see the light at the end of the tunnel right now. It feels like he's dying. Every day I'm crying. But I can't talk to him and burden him further , I have to be the strong one but keeping it all inside is hurting me too. I feel suffocated by the responsibility of looking after him and our daughter. There's just no breaks. Sometimes I don't even want to be around him because it's so hard. I don't have any friends, just my mum and nan and the occasional message from a work colleague. He has no close family now, he's pulled away from his friends, they don't know how bad it is. He's currently on sick leave and I'm on the no money part of my maternity leave, just have savings now. That's another worry, finances.

Honestly there's so much more I could write but it would turn into a dissertation. I just need to offload and it would be comforting to hear similar stories. I feel so alone in my current reality and just unrelatable to any other new parents.

Thanks for reading.

OP posts:
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6
Thistooshallpsss · 18/05/2026 01:17

Just for others you can’t get carers allowance without someone having pip or aa for older people. Also DLA doesn’t exist except for children. People who haven’t moved over to pip might still be on it but there are no new claims. Agree with others that it’s worth appealing and citizens advice should be able to help.

Whataflippincircus · 18/05/2026 01:25

I’m so sorry to read your post @SilverLemon . Everything sounds unbelievably hard for you. I hope you get some answers soon. My DM had something similar. It took ages to get a diagnosis but in the end we were told she had supranuclear palsy.

canuckup · 18/05/2026 02:13

How old is he?

Interested in this thread?

Then you might like threads about these subjects:

Franjipanl8r · 18/05/2026 02:38

You need support. Ask for it and accept it in every way possible. He needs to lean on his friends for help and reach out to them. Everyone should be rallying so you can get some respite.

hellomylov3 · 18/05/2026 04:27

He should definitely be untied to PIPS. Do you know anyone who is a doctor or nurse who can help you appeal? You need to detail how his illness affects him day to day. Not being able to get out of bed, cook, wash. This guide is really good. Best of luck , it's not easy doing it all. I've been in your shoes. Financial worries should be the least of your problems.take all the help you can get. There is support out there for carers.

Emeraude · 18/05/2026 04:49

If his condition has got worse, you’ll need to apply for PIP again, not appeal. The MR and subsequent appeal can only consider to the date of the initial decision and no deterioration afterwards. Put in a new application now.

If you think he would have been entitled to it at the time of the decision you can continue to do a mandatory reconsideration that will take you from the date of the initial application to the day before the new application, if you want back pay.

You can’t get Carer’s Allowance without PIP so don’t apply. Waste of everyone’s time.

sunshinestar1986 · 18/05/2026 05:02

Bless you, this is such a difficult situation.
It sounds like what my niece went through, FND. I think it's more common in females.
She was only 17 and had started her A levels, I think they said it was triggered by stress. At first she had all the signs of MS but everything came back clear, lumbar puncture tests etc
She'd be in school, her legs would just stop working, school would call an ambulance, she was incontinent, it was truly a horrible time.
Eventually she was unable to walk, absolutely no physical reason except that her brain wasn't working with her legs, so a physiotherapist taught her to walk despite not having any feeling, essentially she had to relearn how to take steps etc
Her brain stopped working properly, she is a.really clever girl but had to leave college because she just couldn't do her work. This was in 2022.
2023 she was a little better but extremely depressed. We took all stress away from her and essentially let her sleep as long as she needed etc
2023 she started doing hobbies and at least helped around the house, and helped her younger sisters through gcses etc
And she needed to learn all her triggers, eat better, sleep better
She finally finished her A levels too
She's 22 now and is working as a part time and is planning to go to university in September.
It took a long time to get to.this point and she will always need to be careful.
But I do believe your husband needs to address his depression, his stress levels, work with all services and want to get better. And, definitely get pip and carers while he isn't able to work. Eventually there's no reason why he can't take over a greater role at home until he can go back to work.
I wish you well

denialandpanic · 18/05/2026 05:23

Fightback for justice can help with pip

Nottodaythankyou123 · 18/05/2026 06:00

I’m sorry you’re going though this, it sounds awful. My DP was unwell when my DC2 was 2 months old and it was dreadful, albeit only for about a month, so the fact you’ve got this far is such a feat.

practically speaking, you may be entitled to UC (depending on your savings), and if you are I’d look for a nursery and pop LO in for 2 mornings a week (85% covered by UC, it’ll get her used to it long before you start work, and it’ll give you a little break twice a week).

Ask for help wherever possibl and try and make your life as simple as you can - meal planning boxes or a cleaner once a fortnight or anything you can just about swing financially that’ll take a job off your plate.

Iocanepowder · 18/05/2026 06:15

Really sorry to read this op. I would definitely speak to your HV and get a referral to Homestart. They are volunteers who come to help you a couple of hours a week.

What is your financial situation like? Do you have any savings to either send baby to childcare a bit early for a bit, or to try and get DH seen privately for an assessment to try and speed up diagnosis?

If finances are a worry, could you go back to work early? Does your work offer a phased return?

Watercooler · 18/05/2026 06:24

If he's had scans and tests on the NHS I would probably try to get a private appointment with a neurologist and take all the scans with me. It'll cost a few hundred pounds but you may get some answers as they'll give you more time, sadly, than they do on the NHS.

bluejewels · 18/05/2026 06:36

I'm so sorry you are going through this, it is incredibly tough for you both. Do reapply for PIP and make sure you are getting all of the benefits you are entitled to.

CrepuscularCritter · 18/05/2026 06:54

I am so sorry you are all in this position. From personal experience, it can be a long road back to the new normal.

Was he discharged back home from hospital with a care package? Some local authorities have an early intervention team that provides support for a few weeks with carers. Can your local councillor clarify this? If it was missed at the time, cam they do it now? It also gives access to community physio and OT.

I'd recommend the Sepsis Trust for practical advice.

As for the emotional situation, it's a long road back for everyone involved. Being abruptly reminded of your mortality hits hard. And that's when your physical resilience is low too. I hope you can access the help needed. Definitely apply for that PIP reconsideration and keep filing all the medical evidence in case you need it again.

Allsizes8to14 · 18/05/2026 07:26

Confuserr · 18/05/2026 00:17

I don't know why anyone is suggesting FND or Lymes when OP clearly said he had sepsis.

Post-sepsis syndrome is however a recognised phenomenon. More common in those who've been in ITU but not exclusive, and the psychological stress which preceded sepsis won't have helped, if it's that.

https://www.sepsis.org/sepsis-basics/post-sepsis-syndrome/

I wish you (and him) all the best OP, whatever it is.

I was suggesting this as he had some of the symptoms BEFORE his sepsis, dizziness, limb weakness, urinary retention which can all be FND symptoms. Could be totally wrong obvs but wanted to mention just incase it was relevant/hadn’t been considered

DemonsandMosquitoes · 18/05/2026 07:59

Unexpectedlysinglemum · 17/05/2026 22:06

Can you get his mum to come and stay for a bit to look after him if she’s alive and well? Or send him to hers?

Or his dad

throwawayimplantchat · 18/05/2026 08:20

DemonsandMosquitoes · 18/05/2026 07:59

Or his dad

OP said in the first post his dad sadly passed away very recently.

SilverLemon · 18/05/2026 08:23

Thanks for all the replies.

Initially when this all started I did believe it was either MS but once his MRI scans were clear then I thought FND too. We did get a private consultation with a neurologist because the waiting times for the NHS are so long (still waiting for the NHS appt). That neurologist believes it's a progressive central nervous system disorder affecting multiple anatomical areas. He has ataxia, double vision, slurred/slow speech, also difficulties swallowing food and drink, hasn't choked thankfully but has frequent coughing fits trying to clear his throat. He's had MRIs, CT scans, lumbar punctures, blood tests and a nerve conduction study, all normal except had low/borderline vitamin B12 and also had low folate when I was pregnant and needed folic acid. We're waiting for more testing to be done as an outpatient next month. I spend a lot of time researching what it could be. A possible option is something genetic, which frightens me for our daughter.

He was completely healthy before all this started, now he's just a shell of a man. His negativity and groaning all day are also really affecting me. Makes me want to get away from him but then the guilt strikes and worry that he'll fall over if I'm not there. I'm just constantly 'on' between baby and him.

I currently need to sort out PIP, apply for council housing (we privately rent but house isn't suitable for him now, he can't safely manage the stairs and bathroom is upstairs and it's a smallish house so between all the baby items and his Zimmer frames, we're pushed for space). Never thought we'd have to consider these options. I'm also looking at other rental properties but the rent is at least ÂŁ300pcm more than what we pay now and with financial uncertainty, that doesn't seem wise. I did ask for a social care assessment last Friday and now waiting to hear back from them.

I'm having a KIT day at work this week to discuss options for my return, given the situation I've found myself in. My job is shift work, can be unsociable hours. His job is more of a 9-5, so nursery pick up and drop offs were going to be his job if I was working, but he now can't drive, nor could he look after her safely anyway. So that's another issue. We viewed lots of nurseries and this was the only one I got a good gut feeling for. Problem is, its not within walking distance for my mum to collect her if needed as she doesn't drive. So planning to ask for a temporary fixed shift pattern (I need to refresh some training before I can fully do my job again, which isn't likely until the end of the year anyway) and then reassess. May mean I have to switch roles and do a job I'm not interested in, which does suck but if it has to be done, it has to be done.

The worst thing is the uncertainty, not knowing if he's going to get better, worrying he's going to get worse, fearing it's something genetic, worrying about finances and housing.

OP posts:
Difficultwill · 18/05/2026 08:41

I am so sorry you and your partner are going through this. I almost lost the use of my legs and need to walk with a frame after developing Fluroquinolone toxicity syndrome secondary to the ciprofloxacin antibiotics I was given for an infection. Do you by any chance know what he was given for his sepsis or can the GP find out? I know it is a long shot and there is no definitive treatment for this but it would give you a diagnosis and some options of help. It is rare and not really known about by most doctors and I had to fight for a diagnosis.
You need to fill out the PIP forms again and apply for carers allowance. The citizens advice can help with this. Let other people help you as time is so short when looking after a baby and a sick disabled partner.
I do feel for you and your family so much and send virtual hugs. Good luck

SilverLemon · 18/05/2026 08:48

Difficultwill · 18/05/2026 08:41

I am so sorry you and your partner are going through this. I almost lost the use of my legs and need to walk with a frame after developing Fluroquinolone toxicity syndrome secondary to the ciprofloxacin antibiotics I was given for an infection. Do you by any chance know what he was given for his sepsis or can the GP find out? I know it is a long shot and there is no definitive treatment for this but it would give you a diagnosis and some options of help. It is rare and not really known about by most doctors and I had to fight for a diagnosis.
You need to fill out the PIP forms again and apply for carers allowance. The citizens advice can help with this. Let other people help you as time is so short when looking after a baby and a sick disabled partner.
I do feel for you and your family so much and send virtual hugs. Good luck

He did have cipro for his sepsis, that's interesting I'll have a look. Thank you

OP posts:
ToastSafeFromMothsAndDogs · 18/05/2026 08:50

I’m so sorry you’re going through this.

Has he been tested for a condition called neuromyelitis optica? There is a blood marker, I believe, so it’s quite straightforward to test for, but it’s pretty rare so it’s just possible that although the symptoms sound like it, the neurologist may not have checked.

lovepets · 18/05/2026 08:54

If your husband received his rejection from PIP over a month ago, it’s too late for mandatory reconsideration or appeal. You will need to start again, which if he is worse, is no bad thing. Look locally for charities who complete PIP forms. If he gets it, which he should do, as they go on care and mobility needs, not diagnosis, you could then claim carer’s allowance, but probably only while you’re in your no pay maternity allowance period. Once you go back to work, if you earn over £204 after tax, pension and NI, you won’t be eligible. I’m not trying to be negative about that, just pointing out the facts, as there’s a lot of misinformation on here unfortunately

Comtesse · 18/05/2026 08:58

My god you are carrying a lot OP. It feels hard because it IS hard, this is not you being a wimp far from it.

Are there friends or family who could help by looking after the baby for a couple of hours at the weekend so you could rest?

Bababear987 · 18/05/2026 09:04

Look into pernicious anaemia

BadSkiingMum · 18/05/2026 09:25

sunshinestar1986 · 18/05/2026 05:02

Bless you, this is such a difficult situation.
It sounds like what my niece went through, FND. I think it's more common in females.
She was only 17 and had started her A levels, I think they said it was triggered by stress. At first she had all the signs of MS but everything came back clear, lumbar puncture tests etc
She'd be in school, her legs would just stop working, school would call an ambulance, she was incontinent, it was truly a horrible time.
Eventually she was unable to walk, absolutely no physical reason except that her brain wasn't working with her legs, so a physiotherapist taught her to walk despite not having any feeling, essentially she had to relearn how to take steps etc
Her brain stopped working properly, she is a.really clever girl but had to leave college because she just couldn't do her work. This was in 2022.
2023 she was a little better but extremely depressed. We took all stress away from her and essentially let her sleep as long as she needed etc
2023 she started doing hobbies and at least helped around the house, and helped her younger sisters through gcses etc
And she needed to learn all her triggers, eat better, sleep better
She finally finished her A levels too
She's 22 now and is working as a part time and is planning to go to university in September.
It took a long time to get to.this point and she will always need to be careful.
But I do believe your husband needs to address his depression, his stress levels, work with all services and want to get better. And, definitely get pip and carers while he isn't able to work. Eventually there's no reason why he can't take over a greater role at home until he can go back to work.
I wish you well

Your poor niece. That puts stuff into perspective.