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New to forum, struggling in caring role. - Carers UK Forum

New to forum, struggling in caring role.

Tell us a bit about yourself here.
Hello everyone, wonderful to find this forum.

My husband has had heart problems, along with some other conditions, for a long time.

Just after the beginning of the lockdown for coronavirus he had a heart attack and was hospitalised for several days. Couldn’t go with him to hospital obviously nor visit, which was very hard.

He has now been diagnosed with heart failure due to the damage to his heart muscle. Have had brilliant support from a heart specialist nurse at a local hospital but due to the lockdown follow-up care has been limited. There have been some ups and downs with managing his medication and so on.

I have become used to doing the housework, garden, dealing with admin/tech issues and providing emotional support and encouragement over the years.

Winter is always a difficult time, being stuck in, trying to stay away from lurgies, so the lockdown was a real blow to him in its timing and he took it hard.

My husband is retired and I am not working, so we are both pretty much constantly in the house in the normally, and used to spending time around each other. Normally we try and get away for a bit in the summer. There is a significant age gap between us, he is in his seventies, I am in my late forties.

We have managed to generally make the best of the situation before, but this is different. I feel like we have entered a different phase. The role of carer seems inescapable and more necessary to me.

My husband is finding the increased loss of independence, strength and autonomy very difficult. I feel for him terribly with this.

However, much as I love him dearly, I am finding it hard to cope with his angry outbursts, mood swings, general irritability, negativity and criticism. I feel like I am first in line for the expression all frustrations, and that, in his suffering, it often seems to be all about him. I think he is depressed, even if he does not see it this way.

I worry, at times, that I am heading the same way. Everyday seems like more of the same.
I feel worn out, stressed, irritable,lonely, can’t concentrate, and just drained at the thought of future. I worry that I will not be able to stick it out.

I feel sometimes that my life is over, that my life has been reduced to worrying and making sure he is ok. It feels like the joy is just leaking away from my life.

I have had to give up a few of my outlets for stress, (visiting friends, yoga classes etc), over the last few months, but even going out for walks etc now doesn’t make me feel better as I worry about leaving him for extended periods of time, and sometimes I just dread going home to more unhappiness.

Many thanks for bearing with me with the off-loading, helps just to type this out.

Take care, everyone out there.
Hello

Have you requested a needs assessment or not?
Hello TigerLily. I’m not surprised you’re struggling. Massive changes are going on for you both.

It must have been awful for you not to be able to console each other when he was in hospital.

I’ve just recently posted again after several years. My husband has Aspergers and is beginning to get forgetful and he’s awaiting tests and CT scans.

I’m very much missing my get together with friends. My husband has given up all his hobbies and just spends time on his phone. He used to be a clever man and good at all sorts of DIY. He isn t interested in anything much, not even our grandchildren. Of course I can’t see them either. And I am missing them.

I find myself being angry, wanting to run away, imprisoned even. Other times I feel very sad at losing even more of him. I don’t know what is memory loss and sometimes whether he could try a bit more.

I do use helplines to vent often one for survivors of child abuse (as I am) and occasionally the Samaritans to just get the words out and stop them churning round in my head.

Also a forum I used for support to do with autism has closed down. Very few people understand it and the huge difficulties that on its own presents.

This is an awful time for something like this to happen to you both. It will get better and you will find ways to cope.

I’m glad you posted and had a vent. When you get the headspace and some physical space you will be able to go through the emotions and find strategies and changes you can make.

Just wanted to let you know I recognise some of how you feel.

Hope some of the others will come and ‘talk’ to you soon.
Hello and welcome

You don't receive training to be a long term carer. I have be one for many a year. I have what I call a two year cycle. I start to prepare myself for the next stage. So I tried to armed myself at the same time anticipating. What will come next.

Such as possible additional equipment future health professionals. Keep reviews up to date and relevant. I have built up a good rapport with professionals. Keep them updated and just checking in periodically.

Because of the current virus situation. Everything is even more heighten. You are doing a good job. Yes, job - caring is a job and we are expected to be all things to the person we care for. However, there is no excuse for any individual what every their circumstances or disability. To be their answer to all their problems.

You can get a personal alarm for your husband. So you can go out - you need to take back control.

You can have respite while he stays at home. You do have options. They may not be quick fixes but you need to demonstrate. That you are allowed a life.

I've had deliberately used (you) a lot. Because only you can take control and make changes.
Hi Tigerlily,

And welcome to the Forum. I hope you find it a good place to offload and chat along. You will find some of us chatting on Roll Call in the members section. Don't be shy, just join in, we were all new once.

It must have been a terrible time for you both when your husband was in hospital. And now you have been thrust into this caring role. I tend to recommend this book to relatively new carers as I think it describes some of the resentment / guilt that comes with the caring role:

https://www.amazon.co.uk/Selfish-Pigs-G ... ooghydr-21

If you are in this for the long haul, it is crucial to take time out for yourself. Can your husband be left for short periods of time, perhaps with an alarm pendant for emergencies? This would at least enable you to go out for yoga etc. Incidentally, in lockdown times I have started doing yoga with Adriene on Youtube which is good if you can't get out.

How much care does your husband need? Would carers coming into the house help you at all?

Anyway, I realise I am asking lots of questions so will shut up now. Take care, Anne
You have rung so many of my bells, Tiger Lily, and I am sure of many other 24/7 carers. We are not leading a life, but an existence and a very abnormal one, to boot . Somehow you must try to inject even a few hours of "normality ' in to each week -- difficult , I know, but as examples, think about a walk with a friend or a Zoom session .
Apart from a Needs assessment, you should go for a Health and Well Being Assessment which will be made by a social care worker attached to your doctor's surgery. It is done in conjunction with the local NHS Trust who may well be recommended to pay for some sessions with a recognised Counsellor near you. It is not a total cure but it can help and has to be worth a try.

Also look for stress management help on the web -- Carers UK of course provide this but , like me, you probably cannot leave home enough to attend sessions. But help is coming increasingly via Zoom , please check it out.

I wish you strength to carry on and pray that your mental stability will not be damaged more -- if there is one thing I keep a metaphorical eye on , it is that because it has been welll hit since I became a full time carer .

All the luck in the world, Tiger Lily.
thara_1910 wrote:
Wed Jun 17, 2020 6:53 pm
Hello

Have you requested a needs assessment or not?
Hello,

Thank you for your comment. No, I haven’t got that far yet, I’m afraid. Been in a kind of limbo, just getting through each day at a time. I have just started reading up about assessments. It’s a tricky one as some days my husband is a lot better, than others. Wishing you all the best.
Linda_150812 wrote:
Wed Jun 17, 2020 7:04 pm
Hello TigerLily. I’m not surprised you’re struggling. Massive changes are going on for you both.

It must have been awful for you not to be able to console each other when he was in hospital.

I’ve just recently posted again after several years. My husband has Aspergers and is beginning to get forgetful and he’s awaiting tests and CT scans.

I’m very much missing my get together with friends. My husband has given up all his hobbies and just spends time on his phone. He used to be a clever man and good at all sorts of DIY. He isn t interested in anything much, not even our grandchildren. Of course I can’t see them either. And I am missing them.

I find myself being angry, wanting to run away, imprisoned even. Other times I feel very sad at losing even more of him. I don’t know what is memory loss and sometimes whether he could try a bit more.

I do use helplines to vent often one for survivors of child abuse (as I am) and occasionally the Samaritans to just get the words out and stop them churning round in my head.

Also a forum I used for support to do with autism has closed down. Very few people understand it and the huge difficulties that on its own presents.

This is an awful time for something like this to happen to you both. It will get better and you will find ways to cope.

I’m glad you posted and had a vent. When you get the headspace and some physical space you will be able to go through the emotions and find strategies and changes you can make.

Just wanted to let you know I recognise some of how you feel.

Hope some of the others will come and ‘talk’ to you soon.
Hello, and thank you for such a lovely comment. I really appreciate you taking the time to respond so fully.

It makes such an indescribable difference to know they are others out there who are going through the same kind of difficult feelings.

Yes, it was very hard when my husband was in hospital. The worst part was when he was taken in by paramedics and I just didn’t know if he would be alright or whether we would see each other again.

I really feel for you on your situation. It sounds very difficult for you. It is so painful when you feel you are losing the relationship you have between you too.

I completely understand what you say about all those feelings of anger and being imprisoned. You have a huge amount on your plate, including your own difficulties.

I am so sorry that the autism forum that was a support to you has closed. That is such a shame.

I do so hope you will be able to see your grandchildren again soon.

Thank you so much for your understanding and encouragement. I wish only the best for you and your husband in your situation.
Tigerlily, it's not the good days that are important in terms of an assessment, but the "I just can't cope any more" bad ones, because those are the ones that damage your health most. Have a notebook or file where you write down over a week everything you do, because often we get so used to doing something that we don't consider any more that under normal circumstances you wouldn't ever do it. I'm slightly disabled myself, and try very very hard not to ask my eldest son who lives with me to do things, I'll do my very best to get round them, but sometimes there is simply no alternative.
Anne001 wrote:
Thu Jun 18, 2020 9:07 am
Hi Tigerlily,

And welcome to the Forum. I hope you find it a good place to offload and chat along. You will find some of us chatting on Roll Call in the members section. Don't be shy, just join in, we were all new once.

It must have been a terrible time for you both when your husband was in hospital. And now you have been thrust into this caring role. I tend to recommend this book to relatively new carers as I think it describes some of the resentment / guilt that comes with the caring role:

https://www.amazon.co.uk/Selfish-Pigs-G ... ooghydr-21

If you are in this for the long haul, it is crucial to take time out for yourself. Can your husband be left for short periods of time, perhaps with an alarm pendant for emergencies? This would at least enable you to go out for yoga etc. Incidentally, in lockdown times I have started doing yoga with Adriene on Youtube which is good if you can't get out.

How much care does your husband need? Would carers coming into the house help you at all?

Anyway, I realise I am asking lots of questions so will shut up now. Take care, Anne
Hello Anne,

Thank you very much for your reply on my post.

Thanks for mentioning the Roll Call section.

I have just ordered the book you mentioned on Amazon. I look forward to reading it.

Yes, in this for the long haul. We have had some intense periods with my husband’s health before, nearly lost him before.

I know he’s not going to get better as such, just hoping that his condition can be kept stable and managed as best as possible.

It is more his quality of life, I worry about. He is a very strong person in himself and his will to live is strong, we just need to find a way for it to be as good as possible for him as possible (without me going round the twist as well, obviously).

In answer to your question, yes, he can been left for short periods. I feel more confident about that now than just after his heart attack. His medication is working more successfully now, had to have some dosage adjustments, so no more early hours panic with breathlessness.

At present, I haven’t been going out much at all due to lockdown. Still wary of seeing people now, as would feel so dreadful if I picked up Covid-19 and infected him.

Online yoga sounds a really good idea. I will have to give it a try. Have been feeling pretty low and lacking energy, but I think every little bit would help.

Thank you so much for your kind and encouraging words, and for such a nice welcome. All the very best.