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Expert Q&A: Looking after yourself as a carer - Friday 25 January, 3-4pm

Discussion in 'I care for a person with dementia' started by HarrietD, Jan 16, 2019.

  1. HarrietD

    HarrietD Administrator
    Staff Member

    Apr 29, 2014
    4,753
    London
    As a carer for a person living with dementia, the needs of that person will often come before your own, and this can mean that you don’t always look after yourself. You may feel that it’s not always possible to make time for yourself, or that you don’t have time to do all the things you need to do. You might also feel selfish or guilty for thinking about your needs as well as someone else’s.

    However, if you’ve heard the phrases ‘put your own oxygen mask on before helping others’ or ‘you can’t pour from an empty cup’, you’ll know how important it is to look after yourself. Not only is it important for your own sake, but also for the person you care for. But how do you do that properly?

    Our next expert Q&A will be on looking after yourself as a carer. It will be hosted by Angelo from our Knowledge Services team, who focuses on wellbeing. He’ll be answering your questions on Friday 25 January between 3-4pm.

    Don’t think you’ll be able to make it? Feel free to post your question on this thread, or if you prefer you can send your question to talkingpoint@alzheimers.org.uk and we’ll be happy to ask them on your behalf.

    We hope to see you here next Friday :)
     
  2. safray

    safray Registered User

    Feb 2, 2017
    32
     
  3. safray

    safray Registered User

    Feb 2, 2017
    32
    I just do not understand the system. Now I need conversation, family are very good but Xmas was a dIsaster. family invited us to new in-laws home for big festive day. After very stressful times finding gifts for all, husband kept trying to open for whom presents we have made ready for the day I hid them under the bed to stop the never ending questions. Suddenly after problem here we were left without lift to venue & we had a non christmas day as no microwace, no festive food & I really do not wish to experience another - such a non event after living over 80 years, how do I overcome this & explain to the family how I feel as everyone gives husband every attention but forget me as carer, which I am finding more difficult every day
     
  4. Margaret clapp

    Margaret clapp New member

    Sep 1, 2018
    6
    I am a carer for my husband and I have vascular dementia. He had a diabetic hypo yesterday. I am supposed to help him. I found it difficult to do that and broke down crying as he gets aggresive with me. I had to call 111 then my friend neither could help. I had to call an ambulance. My Husband was responsive to them. Why not me. He says he cant help it. But he could answer all the questions for them and let them help him. I am tired fed up and the paramedic said he cant help acting that way meaning my Husband when he is out of it with his hypo. I wanted to walk away. But knew it would be dangerous to my husband
     
  5. safray

    safray Registered User

    Feb 2, 2017
    32
    I now know however good many people believe can advise on these very difficult situations no one can actually understand unless have experienced something similar. These learned academics may feel they have ;the answers, but no they do not but must listen to all. My thoughts are with you.
     
  6. HarrietD

    HarrietD Administrator
    Staff Member

    Apr 29, 2014
    4,753
    London
    Thanks @safray and @Margaret clapp for sharing your experiences. Our expert, Angelo, will do his best to answer your questions during the session on Friday.
     
  7. Whisperer

    Whisperer Registered User

    Mar 27, 2017
    83
    Male
    Hampshire
    Hello
    My circumstances are nowhere near as bad as others so a part of me feels guilty just posting. I care for my mum in the early stages of vascular dementia. Other siblings visit fairly briefly once a week. Mum does not acknowledge her condition so it cannot be discussed in front of her. Basically I am the sole carer, gave up a day job and now work two nights a week in a supermarket. Hours fit in around mum, people are nice but mostly working alone. Previously worked away so lost contact with prior work colleagues. Finding the caring mostly okay, but it can be frustrating with repeated questioning, trying to get mum to buy into goingto appointments, etc. Feeling increasingly isolated, my interests are slowly failing to provide any spark, the emotional tank is getting pretty flat. Anxiety is starting at the margin. I meditate, recognise the need to take care of myself,starting a fitness regime recently after putting on a stone in the last year. What tips are there to keep mental spirits up. Me and mum use to have great conversations, but withshort term memory gone I havetotiptoe round so many topics. It feels like I am alone but live with someone very precious to me. Does that make any sense?
     
  8. marionq

    marionq Registered User

    Apr 24, 2013
    5,673
    Female
    Scotland
    In the early years I threw myself into Alzheimer’s groups and events involving other people I met at them. I’m very glad I did as I met good people and learned a lot. However as I was helping my husband through this difficult time I was losing myself and the things I cared about. I did a lot of historical research and had to give that up as my husband would go out wandering and getting lost if he didn’t have my total attention. We are now in the seventh year and he is too immobile to go wandering but needs 24/7 care and I just don’t have the time to go back to my interests. I bought a new laptop 3 years ago and it is mainly untouched.

    I do feel sorry for myself but then I read other members circumstances on TP and recognise that life could be so much worse and so much harder. Daycare and occasional respite in a good care home are lifelines that all carers need.
     
  9. Annalou

    Annalou New member

    Jan 4, 2019
    2
    I understand everything you say. My mum moved in with us 12 months ago. She is in the early stages of dementia and will not recognise it. I really do not know how much more I can take. I have given up so much for her and am hurting as she is constantly bad-mouthing us to other people, and they believe her! I don't think she likes living with us. I am considering finding her somewhere else to stay before my health deteriorates. I feel so guilty for saying that.
     
  10. LouLou23

    LouLou23 New member

    Mar 12, 2018
    8
    Female
    North Yorkshire
    I am what I think is called a long distance carer. We do have a carer going in to see mum 3 times a day at her home where she is by herself. I live a 3 1/2 hrs drive away from mum and my brother is further away but we do go and stay when we can. But it is still stressful for me, esp as we have already being through it with my Dad who died nearly 2 years ago, it doesn't make it easier!
    I call mum at least once a day, and I an the one she calls when she wants anything and I am the dealing with most issues. Luckily I only work 2 days a week, but she does seem to take most of my 'free' time up somehow. Mentally coping with it is still hard even if you are at a distance from them.
    How can we look after ourselves, mentally?
     
  11. safray

    safray Registered User

    Feb 2, 2017
    32
    I miss day to day small talk. My husband is also losing hearing and so many comments go unnoticed. Daily I feel I am going out of control but somehow manage to keep going. Today frozen snow everywhere & afraid to walk to local shops. Should really do a full supermarket shop for 1 week but impossible. Will wait to find better conditions and cope then. Still hoping as always.
     
  12. Canarylilac

    Canarylilac Registered User

    Nov 19, 2012
    4
    Hi , I am 62 and my husband is 82. We have been together 30 years. My husband was a driven man, sporty, CEO, and always on the go with a lovely nature and sense of humour.

    Early in his diagnosis 3 years ago he contracted sepsis and lost a lot of weight and was in hospital for 8 weeks. When he came out was very frail but didn’t do his exercises and so has never regained his strength. He is now a very frail 82 year old whereas before he looked and acted 15 yrs younger than he was.

    His personality has changed, he snipes at me all the time, people comment on it, and if I try to encourage him to do some exercise he tells me to get lost and what do I know. He is not the man I fell in love with but I do still love him but I know I am not handling his dementia very well. All the blurb says do not argue etc. But I feel if I just leave him to his own devices he will be bedbound in 6 months and we have nowhere downstairs for a bedroom or bathroom. I also know, and this sounds awful , I am not a carer in the physical sense and would not be able to cope with an invalid. I can just about cope with losing him mentally but I know I won’t be able to cope with someone in a wheelchair.

    Any suggestions? I work 3 days a week which he hates but I love my job and it is my only respite. We have no family close by.

    Kathy

    Sent from my iPad
     
  13. HarrietD

    HarrietD Administrator
    Staff Member

    Apr 29, 2014
    4,753
    London
    Thanks @Whisperer, @marionq, @Annalou, @LouLou23, @safray and @Canarylilac for adding your comments, and being open about your experiences. We've passed these along to Angelo, and he'll respond to as many of you as he can tomorrow :) If anyone wants to add anything else here before then, please feel free.
     
  14. HarrietD

    HarrietD Administrator
    Staff Member

    Apr 29, 2014
    4,753
    London
    Hi everyone, we'll be starting the Q&A in a few minutes. Angelo from our Knowledge team will be answering questions until 4pm. Welcome, Angelo! :) *waves*
     
  15. AngeloM

    AngeloM Registered User

    Apr 10, 2015
    16
    *waves back*

    Hello everyone!

    I've prepared some answers for some of the questions already asked, and will try my best to answer everything else that comes up too.
     
  16. AngeloM

    AngeloM Registered User

    Apr 10, 2015
    16
    I’m really sorry to hear about your Christmas, and sorry to hear about how you’re feeling in general too. It is fairly common for the focus to be on the person with dementia while the carer can sometimes get a bit forgotten, both by health and social care professionals, and also family and friends. I’m wondering how much the family knows about dementia as a condition, as sometimes people may not realise the complexity of it and may think it’s just about memory loss and not much else. It may be useful to think about which family member/s might be receptive to finding out more, and then either giving them some information to read or watch (our YouTube channel has a lot of videos explaining different aspects of dementia).

    If the problem is more that your family think that you do not need help, then it may be more of a case of telling one or two members of the family exactly how difficult you are finding things. Again, pointing them to information such as our factsheet on looking after yourself as carer could be useful as it may help them to see that carers – every single carer – will need support in some way or another as dementia is such a complex condition. The fact that as a dementia charity we have an entire factsheet on being a carer and looking after yourself should hopefully help them to see the need to support you.

    I wish you all the best.
     
  17. AngeloM

    AngeloM Registered User

    Apr 10, 2015
    16
    I’m sorry to hear that, it sounds like it was a very distressing time for you yesterday.

    I’m not sure if your husband also has dementia, but it is quite common for a person with dementia to be able to ‘present’ quite well in front of health and social care professionals. There isn’t really an adequate explanation as to why this might happen I’m afraid, but we do know it’s fairly common. It sounds like this was very frustrating for you though, especially because you know how your husband usually responds to you - which sounds like it was very different to how he was responding to the paramedics.

    As I mentioned to someone else earlier, you might find it helpful to contact social services. They can carry out a needs assessment to see what they might be able to put in place for your husband, and also a carers assessment to see how they might be able to support you. I would also suggest speaking with your GP about how you’re feeling, as well as any friends or family members who may be able to help out. Even if someone could come and give you a break for an hour it sounds like it would help you.

    I would definitely recommend seeking more support. You can always contact the Helpline too, as they can give advice around caring strategies and approaches, and are a friendly and knowledgeable ‘listening ear’. You can get in touch with them on 0300 222 11 22.

    I hope that helps.
     
  18. AngeloM

    AngeloM Registered User

    Apr 10, 2015
    16
    Yes, that definitely makes sense.

    Dementia does affect relationships and it can feel very isolating if the person that you would always talk to or confide in is the person who has dementia.

    It’s really positive that you’ve started a fitness regime and try to make time to meditate. A big part of looking after yourself is trying to take whatever time there is to either do something nice for yourself or take a break – even if it ends up only being a small one. I’m not sure how much scope there is in your job at the supermarket to work some time in for yourself (for instance during your breaks, or even while travelling there and back by listening to music, podcasts, or audiobooks?)

    Talking Point is also a great resource for this too, as you can dip in and out as and when you have time. The Helpline might also be useful, as you can call whenever you have some time.

    I’m wondering if any of your siblings could maybe lengthen their visits at all, as this might give you just that little bit more time to either take a break or do something that you enjoy? I know that can be easier said than done, but it might be worth letting them know how difficult things are so they can help out more.

    In terms of feeling anxiety, it might be useful to speak to your GP about this. It’s very common to feel anxious as a carer, and it’s so important that you get support.

    All the best.
     
  19. AngeloM

    AngeloM Registered User

    Apr 10, 2015
    16
    I’m very sorry to hear that, and I think a lot of people in similar situations will identify with the feeling of ‘losing yourself’ while helping out the other person.

    I’m not sure if social services are involved, but a carers assessment may help if your husband needs 24/7 care. Carers coming in may give you some much needed time to rest, or – as you’ve mentioned – daycare or replacement/respite care may also help.

    I’m wondering if there might be a way of adding elements of your interests into daily life – so for instance if you and your husband could sit and watch a historical documentary together? It may be that he is unable to follow it, but if it is something that he is or used to be interested in then he may find it visually stimulating. Similarly, listening to a historical programme on the radio or as an audiobook/podcast while doing other things in the home might be a way to enjoy this interest again (although I do understand that it won’t be exactly the same).

    I hope this is helpful. Our Helpline may also be able to talk through other options with you too. You can reach them on 0300 222 11 22.
     
  20. AngeloM

    AngeloM Registered User

    Apr 10, 2015
    16
    A few people have mentioned guilt, and this is a very common feeling as a carer. It might be a feeling of guilt because of things that you think/feel about the person with dementia, or maybe the thought that you are not spending enough time with them or looking after them as well as other carers. (This last one is very common).

    I actually helped to write a blog post about this in November, which may help to both identify and manage guilt feelings. We also have a lot of other pages and information on our website about guilt.

    The blog post is here: https://www.alzheimers.org.uk/blog/guilt-dementia-how-manage-guilty-feelings-carer
     
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