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New to forum, struggling in caring role. - Page 2 - Carers UK Forum

New to forum, struggling in caring role.

Tell us a bit about yourself here.
joes wrote:
Thu Jun 18, 2020 11:52 am
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.
Hello,

Thank you for such a warm welcome and for such a helpful reply.

You are right about it all being an existence rather than a full life at times. It is hard to not be able to plan anything long-term for your own life.

I feel like my head is all over all the place sometimes, and just getting through the day can seem like a win.

Yes, very wary of the potential physical and mental toll, now and to come. Have had some issues with depression and anxiety in the past so it does worry me. I feel I need to be able to cope really. The current situation with coronavirus teamed with the caring role is definitely a double whammy for messing with so many people’s heads.

I try and get out for a short walk every day or every other day. I talk to a very good friend every week which feels like a bit of normality. I find it hard to fully relax though, a part of me is constantly mentally ‘on duty‘.

Thank you for telling me about the Health and Well Being Assessment. This is not something I was aware of. I have had some counselling in the past after I was finding it difficult to cope after an operation my husband had, and it is something I would seek out again.

I wish you every strength in your own continuing situation too. And thank again for your considered reply. Means a lot.
bowlingbun wrote:
Thu Jun 18, 2020 12:15 pm
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.
Thank you so much for your reply and your wise words of advice. It is not something I had considered before.

You are right that keeping a record is important and also could give a sense of perspective on the situation.

The days that are really bad are indeed the ones that do most harm. Thank you for making me see that more clearly.

Wishing you all the best with your own circumstances.
My husband and I cared for all four of our parents in various ways, as well as having a son with severe learning difficulties and running our own business.
Sadly, my husband died soon after his dad, from a massive heart attack at the age of 58. I'll always believe stress was the main contributing factor.
I developed cancer and had major surgery which saved my life but has left weakness in some areas. When I asked the consultant why I got it, he told me that "25 years without a holiday hasn't done you and favours".
We all soldier on, doing our very best for family we love, but the emotional toll can be huge, and stress is potentially a killer. Do the best you can to look after yourself, even if your husband doesn't really like it. He needs you, should appreciate the love and care you give him, and has to understand that it's every bit as important for you to look after yourself.
bowlingbun wrote:
Thu Jun 18, 2020 1:11 pm
My husband and I cared for all four of our parents in various ways, as well as having a son with severe learning difficulties and running our own business.
Sadly, my husband died soon after his dad, from a massive heart attack at the age of 58. I'll always believe stress was the main contributing factor.
I developed cancer and had major surgery which saved my life but has left weakness in some areas. When I asked the consultant why I got it, he told me that "25 years without a holiday hasn't done you and favours".
We all soldier on, doing our very best for family we love, but the emotional toll can be huge, and stress is potentially a killer. Do the best you can to look after yourself, even if your husband doesn't really like it. He needs you, should appreciate the love and care you give him, and has to understand that it's every bit as important for you to look after yourself.
Hello,
Thank you for your reply.

I was very touched to read your story, and so very sorry to hear of the sudden loss of your husband and of your own health difficulties.

I hope you have some time in your life now for yourself having given so much over the years.

Thank you for your hard-won words. Times have been difficult recently but I know my husband does appreciate my being there for him. It is hard to feel dependent on someone else, I see that.

Thank you so much for sharing your own experience and for reaching out to me. I really appreciate it.
My son now lives in a privately rented flat, parents and brother died a few years ago. I now have time to look after myself better, usually home hairdresser and home beautician, and holidays in the Med. Crete many times, Majorca, Menorca, Malta, Cyprus. I miss my old life though.
Hello Tiger Lily

I cannot really add to the advice given. I am caring for a very difficult 81 year old - I am 58 and we have been married nearly 30 years. The age difference does seem to add extra stress and we do seem to be expected to cope with far more!. My husband has just come out of hospital after 2 nights due to pneumonia and he only got discharged because he told them his wife was ',much younger and his carer'> No one seems to care how it affects our mental and physical health.
Helena, didn't they ask you?!
NO BB - I had issues tracking him down as he went in Monday Am as an emergency to the infirmary and was not allowed to go with him. I eventually found him at the Heart/lung hospital so he had been moved. Nurse did say she thought he would be in until at least the weekend. But in the night one of the men in the ward was playing up - we think he had dementia constantly ringing the bell and husband got upset and said he wanted to go home. I did ask nurse to talk me through the discharge paperwork and medication but no one called me. He called from mobile for me to order taxi and said he was coming home. He did say that Consultant was somewhat unsure but he said taxi had been booked! If he had 'mental capacity' he can discharge himself. Also I could not lock him out or change locks as it is the family home - checked this out legally . Frankly not sure I am hard enough to do this to a frail 81 year old. But yes, I do feel worried about caring for someone with pneumonia and blood clots but let us see how it goes. I will call 999 if he goes downhill.
bowlingbun wrote:
Thu Jun 18, 2020 9:25 pm
My son now lives in a privately rented flat, parents and brother died a few years ago. I now have time to look after myself better, usually home hairdresser and home beautician, and holidays in the Med. Crete many times, Majorca, Menorca, Malta, Cyprus. I miss my old life though.
My apologies, bowlingbun for not replying sooner, did not realise there was another comment on my post.

I am greatly cheered to hear that you now have more time to look after yourself and for yourself generally. Of course, at the same time, you must miss your old life too. Life is a complicated business, isn’t it? Emotions of different shades often exist side by side with each other.

I hope some of your enjoyable times abroad can continue sometime in the foreseeable. Wishing you all the best.
helena_2006 wrote:
Fri Jun 19, 2020 9:51 am
Hello Tiger Lily

I cannot really add to the advice given. I am caring for a very difficult 81 year old - I am 58 and we have been married nearly 30 years. The age difference does seem to add extra stress and we do seem to be expected to cope with far more!. My husband has just come out of hospital after 2 nights due to pneumonia and he only got discharged because he told them his wife was ',much younger and his carer'> No one seems to care how it affects our mental and physical health.
Hello helena,

Please accept my apologies for not replying to you sooner. I did not realise there had been more comments in my original post.

It sounds as if you are in a extremely difficult position, which must feel nigh on impossible to deal with at times.

I really feel for you with the sudden discharge from hospital on your husband’s behalf. What a nightmare. You’re right, it does seem like you are just expected to just take it all, whatever the circumstances. It sounds deeply wearing and completely draining.

I have my moments when I try and take a good hard, cold look at the future, and frankly, it doesn’t look very rosy. I would not wish for my husband not to have a slow, sad decline if there was somehow a choice. For him it would be intolerable.

Then I start worrying about my parents, and how things will be when they are older, what will happen if their health fails while my husbands needs are getting much more pressing. And so it goes on...the worrying.

It’s hard to balance those big anxieties with the minutiae of everyday life, and trying to keep things going, not forgetting somehow in the process of it all something vital. And remembering to savour the good moments we have together when they occur.

Wishing you the very best with your situation, helena, and thank you again for you comment and for sharing your perspective.