My husband had sudden life altering cardiac arrest

[MandiJune]

Im new here and the site after searching for chatrooms. Im so lonely and feel trapped w hich makes me guilty. I want my life back but i cant leave him, i love him, im so confused right now.

To explain, I am my husbands full-time carer since he had a sudden cardiac arrest, 2years ago. He was left 45 minutes without a oxygen, he had no heart beat, he was dead. We were talking then he was gone. I did CPR until paramedics arrived, they arrived 15 minutes after I called 999, they advised me that he probably wouldn’t make it but were taking him to the hospital, they shocked him 4 times at home but he kept flatlining on top of that he had not had a heart beat for more than 20 minutes, however me doing Chest compressions there was a slight chance. In the ambulance they kept trying and in hospital they rushed him into surgery while I waited in the family room. They were struggling to restart his heart as it had collapsed, so no blood could pump around his body . His brain had been starved of oxyfen. Then they fitted stents, and tried once more, his heart started beating, a miracle, but I was told as his heart had been stopped so long it may not keep beating due to the trauma, so I stayed with him overnight He had blood all over his face where he bit his tongue and lips when they shocked him, I had to clean him up as they just wanted me to see him to say goodbye. He survived the night, then there was a covid outbreak in the hospital, they thought it best to recover at home as no memory previous 6 months or after. I was on my own to care for him, He has permanent brain damage and no memory of the hospital or what happened he has bad short term memory, his balance is bad and he cant walk properly. He wont wash or change his clothing. I have to tell him he smells. He sleeps all day, he wont go out the house, doesnt like me going out, ijave to order shopping from Morrisons. I feel trapped, i have no life. He says about his life changing over night but mine did too. I closed our business to be his carer as he doesnt want strangers in the house.

I am also carer to my son, who is autistic. He is high functioning and lives independently but still need support.

I am so lost and alone. I feel guilty because i want to leave and have life back but i cant because we are married.

[Chris_22081]

@MandiJune My heart goes out to you.

Graham, my husband suffered a mild stroke just over two years ago. We had our own business and I had to suddenly close that as he could not work and I became his f/t carer. He covered slightly, but it has kicked of a cascade of other medical problems, respiratory, cardiac, retinal haemorrhage, then diagnosed with prostate cancer and postural hypotension so he is very unstable. His memory has also been effected and he is being examined by The Brain Centre which specialises in Neurological problems and is shortly undergoing an extensive memory test. I have to repeat things a few times and he asks the same question a couple of times sometimes. He also has mild aphasia and uses the wrong words or forgets a word. Not enough to be a major issue, but I have to sometimes stop and work out what he meant.

Closing our business left us with no income but he could claim his State Pension and then AA, so I can get CA. I am too young for State Pension (yeah I know - boast!!)

I can empathise with you over feeling lost and alone. I sometimes feel like that. My only escape is walking the dog. G doesn’t like it if I leave him for very long and if I am more than a couple of minutes later than my expected return time he starts to panic assuming there has been an accident.

We don’t have any help at home. My nephew and his wife helped a bit for a while last year but then she threw a wobbly over something I apparently said (but she wont say what - just expects a full grovelling apology) and now they will not speak to us! Other family live in USA so no one else near us. Thankfully we have amazing neighbours who would do anything to help if I ask.

I am plodding on trying to keep on top of housework and life in general, but I would love to get out and about more. I used to go to the gym twice a week for 45 minutes (2 hour round trip) but had to stop due to concerns over high BP and a possible heart issue!! I now can’t motivate myself to start back again.

Hoping soon to arrange for someone to stay for a week so I can book a week away with Buster (the dog) and try to switch off. Taking G away is problematic as he has major continence problems and even pads and pants and bed pads don’t always protect the bedding - so staying anywhere is fraught with potential embarrassment. I also have to remind G to change clothes and shower sometimes and he does not seem able to smell the stink when he takes pads/pants off and leaves them in a bin in the bedroom so I gag when I walk in and find them.

In the middle of an evening he will say he is tired so going to have an early night…then over two hours later I ask what time he is going to bed and he replies ‘well after this programme on TV’ (which has JUST started!)… No logic really!

He tells me I should get out more - great when he then says he is desperately worried in case anything happens… I also feel guilty wishing I had a different life and wishing I could just walk away for a bit. However, I said my Vows meant something to me and they still do!

You aren’t alone in this situation!

You WILL find a lot of support on here and people will give you good advice without judgement.

If you check out the Roll Call thread you’ll find some of us chat there and exchange details of our day and have a bit of a gossip. It’s a great way of break the feeling of loneliness.

[selinakylie]

Can only send cyber hugs but echo what Chris says. You are NOT alone. I can relate to a lot of what you have put as my husband is much older and had an acute on chronic brain heamatoma back in 2013. At times I wish I had not agreed to let the brain surgeon operate.

Your husband does sound depressed? Have you spoken to his GP? I totally understand about wanting to leave. I often wish my husband would fall and be taken into hospital just so I could have a break from prompting him to change his pads/have a bath/take his tablets/take his inhalers. He gets nasty when challenges so I have to know when to ‘back off’ as cannot risk him becoming physically violent and breaking my computer or phone. I have not loved my husband for a very long time.

You do sound at breaking point? Can you get out even for short periods? Do you have a local Carers Support? Can you leave your husband alone safely? I can get out but I am always on ‘eggshells’ in case he tries to cook and leaves the ring on. Thankfully we have a local Community Cafe so I can get out there to meet friends for an hour or so. I feel so constrained as if my life is passing me by. I would urge you to try and look at things locally that you can do and try to expand your social circle although I totally accept your circumstances make it very hard.

In ‘Roll Call’ we share the ups and downs of our day and we sometimes have a giggle but there is a lot of support and empathy.

[selinakylie]

I realise that your husband may not like you going out without him . Neither does mine. But tbh I was sinking into clinical depression so literally had to carve out some kind of life. I try to go out for relatively short periods and only locally. Sadly this has meant giving up showing my beloved cats.

I urge you to look at local options where you can make new friends. It took me several years but I do have a few local good friends now. If you have a local ‘Support for Carers’ they would be a good contact point as they may be able to tell you more about what is available locally. My local group has meetings once a month but have never managed to get - tbh when I get a precious couple of hours of free time I like to ‘forget’ caring and concentrate on socialising and feeling like a person instead of ‘little drudge’.
If you enjoy reading, there may well be a local Book Club? You mention having good neighbours - maybe reach out to them? Sometimes a break for an hour for coffee and a chat away from the home is gives enough strength to be able to carry on. It is YOUR life too.

[Victoria_1806]

@MandiJune Hi, welcome. You’re not alone -we’re all here and we see you.
What a traumatic time for you. It’s natural and normal to feel guilty. Of course you’re conflicted.
I have to say I’m surprised the medics kept going - I know that’s harsh but the brain can’t survive without oxygen. You did lose a lot of your husband 2 years ago and there’s only a small part left which can’t cognitively process things - I’m trying to paraphrase and compute everything you’ve shared and I’m so Sad and have huge empathy for you!
I’m imagining there’s grief in there for the person that he was, and the life you both had…

I need to say this - apologies but feel I have to - You can get more life back and if you choose to do more for yourself, you can make a choice of whether that includes caring for your husband. It all depends on your own beliefs and choices.
Before you can make any choice, you need more support, more help at home for your husband and for you. When and if you can get him safely care for, and you have more time for yourself to look at options you may feel that ‘Because we are married’ is not a reason to stay 100% doing all the caring and having that life…again YOUR choice no one elses.
THE important thing is - you sound absolutely exhausted and burnt out and without any support - so can you find a way to get more support?

As @Chris_22081 and @selinakylie have ask -
Do you have any support coming into the house to help now?
Do YOU have any friends or family support?
What’s his medical status and checkups - what does the GP say?
Would you be able to get some agency support for a couple of hours so that you can get out

To be honest - it doesn’t matter if he doesn’t like you going out. He’s scared which is understandable and has brain damage so you need to make the decisions for the safety and care of both of you…If he can’t get out, you need to ensure he’s safely care for whilst you do. Does that make sense? Resonate?

Like my Dad who had vascular dementia, even if he hated us doing some things, underlying everything he felt loved and knew we were always doing what was good for him and us…even if he shouted about things, and was passive agressive…

When you are this exhausted - you may be tending to shut down and say ‘no’ to all suggestions - we understand that too, so I’m sitting alongside you with BIG side hugs…
Just think about talking to your GP, or talk to the Carers UK helpline, get help in the house - MORE for your sake

I would love to tell you to get enough cover so you can take a longer break - but that’s too big a step…I suggest seeing what’s available locally things that can help you keep afloat and swim…so you’re not drowning in caring and being alone…

BIG hugs

[Charlesh47]

Hi @MandiJune That must have been so traumatic for you. And still is, of course. Two years is virtually no time at all in terms of adjusting to a new, horrendous situation. When my wife had a spinal cord injury - it’ll be ten years ago in August -we had to adjust to the fact that she’d have to use a wheelchair. And in some ways we’re still getting used to it, as her situation depends on so many different factors every day. What you’re dealing with is a whole different level.

First of all, the cardiac arrest: the way you wrote it there was no warning. And I’m guessing that he didn’t feel any warning signs either, but just went straight into cardiac arrest. If that’s the case, it’s no wonder he doesn’t want you to leave the house. You’re the only reason he’s alive. The parmedics wouldn’t have known he was in trouble, and he wouldn’t have had the CPR you did. The idea of you leaving the house probably makes him feel panic.

Fitting the stents have probably prevented the likelihood of another arrest, so getting over that fear has to be your main objective. Perhaps a doctor can tell him that the likelihood of another sudden arrest is very low?

Are there any shops close to your home? Perhaps if you have a Morrisons order that somehow misses an important item that’s readily available you can get out for a few minutes to fetch it and show him everything’s fine?

Both of you might benefit from counselling. You’ve both been through major trauma, and it’s a lot to process. Right now he seems to be locked in a “what’s the point of living? I’ve lost so much…” frame of mind, and I’m going to guess here that your husband has cut himself off from friends? It’s by no means just a man thing, but a lot of men react to sudden disability as a loss of masculinity, and don’t want to be seen in their new, “pathetic” state.

Have you ever talked to each other about how you feel about that day, and what has followed? I’ve always found that the more pressure someone is under, the less they talk to others about it…when that’s actually the worst thing they can do. Additionally, counselling might help him to track a few positives: the fact that you didn’t give up when he had the arrest, and that you’ve stuck with him proves that you love him, if he didn’t know for certain before that. That’s a big plus. He may struggle, but he isn’t incapable. He can learn to do some tasks again.