The physical and emotional cost of being a carer.

Discussion in 'I care for a person with dementia' started by twinklestar, May 3, 2015.

  1. twinklestar

    twinklestar Registered User

    Sep 14, 2014
    Our mother is currently in respite care with a view to being assessed regarding her long term care needs. We, my brother and I, know that she needs to go into 24/7 nursing and dementia care. We had hoped that mum would go into respite care in a more managed way. However, she had two falls and was discharged to respite care following a short admission to hospital. We are currently in the process of finding suitable long term care. I truly understand that it is best for mum to go into long term care.

    From a personal perspective the carer role has hit me harder than I realised and I am currently on sick leave from work with reactive anxiety. I have been off for two weeks and will be away from work for a further two weeks. I know that it will take me some time to get back to normal and, indeed,it will be a new normal. I did not realise
    the physical and emotional impact the carer role had taken on me.How did you recover physically and emotionally? I am particularly interested in recovering my sleep pattern. I find it difficult to get off to sleep and still wake up frequently during the night. How did you prepare for them going into 24/7 care?

    Many thanks.
  2. Delphie

    Delphie Registered User

    Dec 14, 2011
    I think it's all very individual, but for me supporting my mum's 'independent' living had an enormous impact on my health, mainly due to stress. My blood pressure was very high and climbing, I wasn't sleeping well, and I was permanently anxious, and even that peaked more as I was travelling to see her or battling with her over something or other, just to keep her safe, or when the phone rang. It's no way to live, and given how long it went on for I'm not really surprised that it took me a long time (maybe a year?) to get back to normal-ish. I'm miles better but still much quicker to feel that horrible rising panic when something goes wrong, so maybe I'll never be quite the same again. There's no two ways about it, the impact of mum's dementia was/is far reaching.

    I didn't prepare for mum going into 24/7 care. I just made it happen, somehow. That period was also massively stressful as I really didn't believe that I'd get her into a care home or that they'd get her to stay.

    So my advice would be give yourself plenty of time to readjust and don't expect that because you're no longer hands on your problems will disappear. They might not. For me it was almost like having to relearn how to live.

    Good luck. I hope you find a great place for your mum, that she settles well and that your recovery is swift and complete. :)
  3. dottyd

    dottyd Registered User

    Jan 22, 2011
    Do you know anyone going to the states who can bring you some melatonin back. It is the sleep hormone.

    It's very good for getting a restful nights sleep and it's supposed to help with Alzheimer's.
  4. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    Our GP prescribed Melatonin. Bill took it for a good while but I don't think it made any real difference.
  5. Gknee

    Gknee Registered User

    Jan 29, 2014
    North of England
    Empathy for Twinklestar and a plea for advice

    Twinklestar, I think I know how you might be feeling. Mum isn't in a care home - she has chosen to live independently. This involves me micro-managing every aspect of her life, from arranging and taking her to hospital visits to making sure her dog is fed, she changes her clothes, has enough to eat, and managing her finances. I also provide her only emotional support.

    I work full-time as a supply teacher, so no paid days off when I am ill. I have recently injured my back lifting mum out of the car and am unable to get around my own house without holding on to furniture for support. I'm terrified about what will happen if I can't get over to mum's later. She has 2 x 15 minute carer visits every day - I have arranged online shopping but have to be there when it is delivered or it gets 'hidden'.

    The emotional and physical stresses are beyond what I can cope with. There is no one else near who could share her care.

    Now for the empathy part...Twinklestar, I occasionally have glimpses of the void that will be left when mum's main care has to be done by others. It is all-consuming, isn't it? My hope is that slowly we re-learn who we are ( not who we used to be because that changes forever after an experience like this) and can begin to appreciate the joys of living in the moment without that stomach-knotting anxiety. Please keep posting - you are ahead of me on this journey and it is strengthening to hear the experiences of others who are walking the same path.
  6. lesley1958

    lesley1958 Registered User

    Mar 24, 2015

    Twinklestar, I don't have advice for the move for 24 hour care but just wanted to write and say how much this resonates with me. My dad is still at home with my mum as his main carer but I do what I can, try to see them every 3 days or so, phone every day. I have been off work for about 5 weeks now with stress and am currently in the process of a 2 day "phased return" to work - but like you I am beginning to realise how I, and my life, have changed in the last few months and I am wondering whether I can cope again with 5 - or even 4 days full time work. As others here have said, this is all consuming. I think about nothing else all day and dream about it all night. I talk about nothing else to my poor, long suffering friends. Someone on this forum once said that happiness was now an unfamilar concept and I identify completely with that. It's not that I am always depressed amd miserable it's just that I am never happy or relaxed and am waitng all the time for the next bad thing to to happen. I try to be "mindful" and live in the present and enjoy the good times with my dad of which we still have some - but my life and I will never be the same again. It's a hard road we are all walking, us and our loved ones.

    Yesterday was a work day and I was giving a presentation when my mum rang my mobile. It wasn't a crisis but even so I felt the panic rising and head went swimmy, felt faint etc, difficult to carry on, though I did. I took out a mortgage quite late in life and have to work to pay it off so leaving work completely is not an easy option.

    No answers, no solutions, just coping day to day. A salute to all the brave people on here!
  7. patsy56

    patsy56 Registered User

    Jan 14, 2015
    Fife Scotland
    I just want to say that is what happened to me (the off sick) I don't care for my mother but I do for my husband and when she was diagnosed that tipped me over.
  8. twinklestar

    twinklestar Registered User

    Sep 14, 2014

    Thank you to all those who responded to this posting. Every one of you said something that resonated with me which made me feel much better.

    Just to update you. Mum has settled into respite care and has been assessed. We will shortly have to make a decision regarding which home she goes into permanently. For me I reached a point where I needed a break as it was affecting my health. It just so happened that it all came to a head the day mum went into respite care. I am coming to the end of my 4th week off work and will be off for a further two weeks. When I do go back to work it will be on phased return but even so I will make sure that it is right for me to go back.

    How do I feel today - I have to admit I am feeling better and I see a light at the end of the tunnel. I feel more positive though I still have odd wobble. My main priority over the next 2 weeks is to get my sleeping pattern back to normal. I will also be having some counselling. Within 6 weeks I hope to be back to working full time and to have had a couple of sessions of counselling. Today I feel ready to create my new normal. I know it will take me a while to recover fully and creating my new normal will be a challenge but it will be my new normal and that is exciting.

    I will post again a little further down the road.
  9. Melatonin can be excellent if used correctly (and it often isn't). Definitely always worth considering.

    It needs to be given once the person is already relaxed and in bed, ideally once yawning has begun. It needs to be stopped every few weeks to have a week off, or it will become useless. It also needs to be a bio-available preparation which many aren't.

  10. Maldives13

    Maldives13 Registered User

    Feb 4, 2014
    This is amazing to read all these comments. My Mum has gone into two weeks respite. My siblings imploded while I was on a weeks holiday and couldn't cope. Mum lives on her own. Amazing she settled really well into the home. She is also going to be assessed for her long term needs which sadly I think is a care home. She has never been to respite and it's a lovely home so why do I feel so completely and utterly lost? All the posts about organising her life in detail etc means I now feel so bereft and at a complete and utter loss! So I was glad to read this thread as it certainly made me think. We are now waiting to see if the home has a vacancy, if Mum will stay long term and for social services to visit. I just want to get under the duvet and not come out again!
    Good luck all x
  11. Spamar

    Spamar Registered User

    Oct 5, 2013
    Just a potted history, I care for my OH. He went to respite for two weeks last July after I had had Carers breakdown. Whilst my break didn't turn out as expected, I coped until Christmas, which turned into absolutely the worst Christmas I have ever spent! Accordingly, he went into respite for another two weeks in January. Things went from bad to worse and he went into respite again last month. It was scheduled for a fortnight, but I got a bug the second week, so prolonged it for another week. When I went to see him, he had an infection, probably chest, so ABs and he recovered and I prolonged respite another two weeks. We are now in the 5th week and I have decided that he will stay there. Today I was told that I have just started to look better! I feel slightly better as well. I have my own health problems, which obviously doesn't help, but today, for the first time, they don't feel so bad.

    So, you need minimum 6 weeks to feel better, get sleep in order, recover from whatever you've got.
    Gknee, you are heading towards a breakdown, step back, get a break. If you get ill, what use will you be to your mother? None. She will have it go into care in a hurry. Much better to give yourself time to choose and ensure that she is properly looked after.
    Please, people, look after yourselves and treat yourself to a break. I was lucky in that OH understood what I meant when I said that I wasn't well and couldn't look after him properly - he's not usually that lucid!

    Few would choose this path, but as I said in an earlier post, it was him or me.

    I hope all goes well for you!
  12. cerridwen

    cerridwen Registered User

    Dec 29, 2012

    Everything everybody has said so far I agree with and my story is similar. I too am suffering from carer stress. Now signed off work for three weeks. When Dad went into respite care I sort of collapsed, everything ached and I was getting repeated panic attacks. Doc said it was because I had come to a full stop, not having to care for Dad for a while and also being on holiday from work.
    It's a hard lonely road but we're walking it with you. Having a sympathetic GP is a must. Keep posting here. No real advice except see your GP.
    Sending you best wishes and hugs,
    Cerridwen xx
  13. Quilty

    Quilty Registered User

    Aug 28, 2014
    Hello Twinklestar

    You need to be kind to yourself and give yourself time. Go for a walk somewhere nice. Seaside near you? Or a country park? Its hard to get past this as caring takes up 100% of your brain. I almost quit my job as I could barely function. The gods were smiling as I changed to a new job with shorter hours and Mum in now in care. I took 6 weeks off work before the new job as I was just worn out and unable to function.

    Im focusing on healthy eating, house renovations and getting hobbies back. The main one being quilting! (see my name!)

    Do something with your hands or body, Gardening, decorating, crafts. Its about new things and making new. Swimming, massage, yoga. The worlds just waiting for you to rejoin it.

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