Its a lonely existence

[MJ1]

Hi im new to online communities. Was feeling a bit lonely so did a search and, well, I found this! My husband had a sudden cardiac arrest in front on me 4 years ago at the age of 54. I never realised how lonely it could be. 4 years on, it is. Friends drifted away. I have no family. He is just getting more poorly. He has diabeties, under vascular specialist, obviously has heart problems and a genetic heart condition. He had a hypoxic brain injury. His moods are getting worse, I have not been out since this happened. He can’t see it but I can’t go out. He says you go out but then if I say I’m going to see my son he rings me every 15mins after I go home an hour later he’s like, you been gone ages. In order shopping online, he has my phone as it’s easier because he’s always asking who rings or messages me. I can’t go anywhere, shopping is online. Everything is my fault, he shouts at me all the time. I get from him that I’m lazy, why am I tried I do nothing all day, I’m not poorly, he is.

It’s none stop. I don’t sit down. If I do sit down he wants to know why. I clean every day, it by don’t I’m lazy. I cook, I put the bins out, I walk the dogs, I do the garden.

People in so tired. I cry every day. I have no life, this has been 4 years. I feel guilty because I have had enough.

My story starts 11 Nov 2020; .Long story, will try to cut short. My husband had a sudden cardiac arrest, dropped dead in front of me, i did CPR CPR waiting on paramedics. When they arrived he flatlined 4 more Times, 2 times in the ambulance. He was out on a machine to keep oxygen to his brain although his heart wasn’t beating in the ambulance ambulance. At hospital they installed stents he then flatlined again 3 times. I was in the family room, I was told they were doing everything they could do to save him. After 45 mins with no heart beat they eventually bought him back! They took me to see him, he was covered in blood, due to the multiple defibrillator shocks, he had bitten inside his mouth, lips and tongue due to shocks that were used to bring him back. The amount of shocks he had, had damaged his heart, they were not expecting him to make it through the night. There was a covid outbreak in the hospital 2 days later which meant he was safer at home and again they didn’t think he’d make it. A team of nurses would help me at home as he needed 24/7 care. They never arrived.

[Sue24]

@MJ1 …..welcome to the forum, I’m glad you’ve reached out. You will find this a good space to share how you’re feeling with people who understand. I understand a little of what you’re going through as my husband has various medical conditions which have got worse over the last 3 years and severe mobility problems. He’s 59yrs old, In the last 3 years he had kidney failure, a stroke, a life saving hernia op, sepsis and spent 7 months in hospital and a rehab centre learning to mobilise. He came home with carers doubled up 4 times a day and a physio team. He wouldn’t work with the physio team so they withdraw their help within the first week. He then went into a care home and is now in assisted living. We’re estranged and in the process of divorcing so I understand how tough this is for you. I work full time and have my elderly parents living with me so understand how hard it is having to juggle everything by yourself.

You have no reason to feel guilty, you’ve done such a lot for so long. Can you speak to adult social services and see if they can arrange for you to have help in place. They should have put carers in place ready for when your husband was discharged from hospital and should have done a home assessment to see what support and help you needed. Sending lots of hugs your way.

[MJ1]

Im sorry you have been through so much too. I feel guilty as i want to go. He does say in should leave him but when i say ok, he gives me the guilt trip. Its not his fault but its not mine either. He shouts and gets angry. He has blocked artieries in both legs so maybe looking at amputation. Only tonight i did dinner and wasnt hungry but after cooking put a little on a side plate for me only to be told thats mine. He said he was joking but i just scrapped it onto his plate. He ate it without complaint! He just moans all the time. If hes awake i have to be. If i go to have a lay down im lazy.

Its not that i want someone else, i dont. I be happy on my own with my dogs.

[Chris_22081]

Hello @MJ1 welcome to the Forum, a safe place where you can vent and say how you feel without judgement from anyone.

Well done for coping this far without help. I am not sure I’d have the strength. You seem to be suffering from Carer Fatigue and Carer Guilt, both of which are perfectly natural and with what you are dealing with are perfectly natural. My situation is nowhere near as bad as yours.

My husband, Graham, suffered a ‘mild’ stroke at New year 2022. He suffered mild speech problems for a short while and mobility was impaired but the prognosis was good. However, we realised we’d have to close our small business as he couldn’t do the delicate medical work he had been doing for thirty years. I became his f/t carer. Things did improve a bit and then he started on a cascade of medical problems, heart failure, respiratory problems, before he was diagnosed with prostate cancer. Last year he had two stays in hospital and after the first needed 6 weeks rehab to get his mobility back, before 3 weeks later being blue lighted back in with breathing problems, eventually diagnosed as a collapsed lung.

Many of our friends and most of my family has walked away from us as we can’t socialise or even entertain very much now. He admitted recently that it has hit him that he is totally dependent on me. Although I already knew this, it was a shock to hear him say it. I totally get the comments about ‘where are you’ and ‘you’ve been away so long’. I get this if I am five minutes later arriving home from shopping than I said I would be. With Graham it’s because he is panicking about what he would do if I was not there.

I have to get him up in the mornings and put him to bed. He is incontinent so I am dealing with wet pads all the time and changing him as much as twice during the day. At night he has a urinary sheath and night bag so I dont have to change the bed 2 or 3 times a night.

Life stinks, doesn’t it? We’ve now employed a private carer to come in 3 mornings a week to get him up and showered as we get no other help and I was at breaking point.

Thankfully, Graham doesn’t get moody or snap at me very often, but he has no life - he just has breakfast then sits in front of the TV most of the day while I rush around keeping house and dealing with everything for two of us and walking the dog etc etc.

His vision is deteriorating and this is making for other problems as his peripheral vision is so poor I have to walk in front of him in a room before he realises I am there, unless I make a noise.

Others will be able to guide you on Benefits etc, but a few questions - please remember, you don’t have to answer!

Have you had a Carer’s Assessment? Has your husband had a Need Assessment? Have you checked that you are both receiving all the Benefits to which you are entitled? The CarersUK website has a Benefits check facility and you can email or telephone the advice line for more unbiased personal information, free of charge.

@sue24 is quite right - you should have had a full care package in place when he came home, but so many things fell apart during covid (or that is the excuse).

You will find a tremendous amount of empathy on here, cos we “just get it”. Many have been in similar situations. You can expect a lot of support once the regulars see your post and loads of really useful advice.

Best wishes

[Michael_1910123]

hi @MJ1 ,welcome to the forum, as both @Chris_22081 and @Sue24 said you have been let down by the system and you should not be in that position. I have been in the position more than once to look after family memebers with very little help. Does you son every visit? I wonder if you could get a letter to your GP and explain the situation and they could try and sort out for you to get a package of care. Also write to your local MP or Council member asking for help of some sort, they could contact people on you behalf to get something in place. AS @Chris_22081 SAID CONTACT the carers helpline and they will help you out. IF it get too much for you call 999 for ambulance and get him sent in and perharps they might sort out a package of care. all the best.

[Sue24]

@MJ1 …..thanks. I understand the guilt, it’s so hard. My husband needed up being moved into the care home environment after years of frustration came out and we had a row. That made it easier for me to get out of the situation and to turn round and say I couldn’t live like that. I’d reached rock bottom and spent 23 years supporting/trying to help him but it all got too much in the end. You’re only young and need some sort of life for yourself. If you’re miserable now things will only get tougher especially if his legs are amputated. It’s a hard situation to be in and I feel for you

[Chris_22081]

Thinking about your situation. Please don’t think this is a callous comment, but if he DOES have to have amputation, that could be the time when you say you cannot Care at home and he needs to move to some form of Care environment. It’s not an easy situation, but you MUST protect yourself and that could be an opportunity for a complete review of both of your lives.

[Alison_1970]

@MJ1 Cannot really add much to the advice given. I do not think you are wrong to want some kind of life - caring needs increase. If he has amputations then surely he will have more care needs? I agree with Chris that maybe the time has come to say ENOUGH as legally no one can be made to care. Could you cope financially if he went into care?

I care for my medically non compliant 86 year old husband and have been doing so since 2013 officially but probably a couple of years prior to this unofficially. Frankly I no longer like him yet alone love him. He takes his nastiness and anger out on me. He is difficult if I see friends yet when he comes along he is very disruptive. He wont do his teeth and his breath stinks. I am much younger. I see myself as a ‘professional carer’ rather than a wife. If there was ANY legal way of getting him OUT I would. Sadly he has said he would divorce me if I do not ‘obey’ and try to put him in a home. I just pray his physical health goes down and he does have co morbidties that he will have to go into hospital. Unfortunately he has a habit of discharging himself and saying that his much younger wife wants to look after him.

So no judgement and a huge amount of sympathy a cyber hugs. I have my beloved cats and a few close friends but life is very hard right now so my heart goes out to you. Keep posting. Have a think about ‘Roll Call’ as this is where we share the ups and downs of caring and yes, some humor, usually black creeps in. Been a life saver for me.

[Tiredanne]

@MJ1 welcome to the forum, you will feel less lonely now you have found this. It was a life saver for me. I think you are in a toxic relationship and you need to protect yourself.
Not being able to find time for yourself is so isolating. You must try to get some time for you, otherwise you will be burnt out and unwell. You seem to have coped alone for four years and this surely can’t continue. I found it hard to draw boundaries, my husband is nowhere near as demanding as yours he just wanted me to be here 24/7. But with support and guidance from people here I started to draw them and I began to feel better. I am now so much stronger, he didn’t like it but has now had to accept them.
Are you physically safe?
I would start going shopping in person, just wandering around in a normal space may give you a break. It sounds harsh but if he rings every 15 minutes then can you try not to answer. If this was a friend of mine in person telling me this I would say it is abusive, and you should not feel guilty about reaching out.
Do keep strong and use this forum.

[bowlingbun]

Welcome to the forum. It sounds as if all the focus is on your husband and you have become “invisible”? This happened to my husband and I, caring at one time, in various ways for our adult son with learning difficulties and all four parents who kept saying they didn’t need any outside help as we did it all, without asking us! As a result, I became very ill and my husband died in his sleep of a heart attack at 58. You are not invincible! In theory you should both have practical and emotional support but in reality have none? I’ll start with benefits, is he getting highest PIP and exemption from Council Tax due to Severe Mental Impairment? Do you manage his benefits or have Power of Attorney? When did he last have a Needs Assessment from Social Services, and when did you last have a Carers Assessment?