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  1. Expert Q&A: Living well as a carer - Thurs 29 August, 3-4pm

    As a carer for a person living with dementia, the needs of the person you care for will often come before your own. You may experience a range of difficult emotions and you may not have the time to do all the things you need to do. Caring can have a big impact on both your mental and physical health, as well as your overall wellbeing.

    Angelo, our Knowledge Officer (Wellbeing) is our expert on this topic. He will be here to answer your questions on Thursday 29 August between 3-4pm.

    You can either post questions >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll answer as many as we can on the day.

Expert Q&A: loneliness and isolation - Weds 22 May, 3-4pm

Discussion in 'Welcome and how to use Dementia Talking Point' started by HarrietD, May 14, 2019.

  1. HarrietD

    HarrietD Administrator
    Staff Member

    Apr 29, 2014
    4,823
    London
    Next week is Dementia Action Week, and the theme this year is social inclusion. So for the next expert Q&A, we'll be looking at the topic of loneliness, isolation and staying connected.

    This is something that can have an impact on everyone affected by dementia, whether you're caring for someone or living with a diagnosis.

    Angelo and Simon from our Knowledge team will be here to answer your questions on Wednesday 22 May between 3-4pm.

    Want to ask a question in advance, or can't make the session? Feel free to post on this thread to be answered during the session. Or if you prefer, send your question to talkingpoint@alzheimers.org.uk and we’ll be happy to ask them on your behalf.

    We hope to see you there :)
     
  2. lell

    lell New member

    Nov 21, 2017
    5
    Not a reply, a question. I can't go to work as am full time carer for my dad. No one to talk with, especially no one who understands that losing your identity is an aspect of dementia that no-one warns you about! Dementia this and dementia that...no warning of the impact on the carer (and possibly family of).As a result of isolation, life can become monotonous with the potential for depression increasing, with depression comes the amotivation to do something about the situation. My question is, is anyone else in this situation? Leaflets saying look after yourself. Lists of support groups that a few and far between, and who wants to meet strangers when feeling low? Most are in the mornings; as are the activities for the individuals with dementia. Sounds brilliant! Hey ho! My dad is no longer an early riser (he point is that there is nothing to get up for!), and it takes me 3 hours to get him ready to go out (from waking him up to being ready to go out). So, we miss the majority of activities as a result of the timing of them. I can't get out as I have to get my dad up, or I need to ensure that he is getting sufficient drinks/food as he will forget as soon as I leave the house. Any, non patronising, suggestions anyone?
     
  3. Duggies-girl

    Duggies-girl Registered User

    Sep 6, 2017
    1,471
    @lell No suggestions but yes I am in the same position caring for dad 24/7 and completely fed up with the whole situation. Dad was ok until he went into hospital in January for pneumonia. In hindsight he should have gone straight into a care home on discharge but I was pressurised into getting him back home and promised lots of help. In fact I get a little help here and there but as I should have known it is becoming less and less. I feel like I have just been left to get on with it again like I am some kind of afterthought but of no real significance and of no importance.

    Yes it is lonely and very boring. I am lucky in that dad is not a lot of trouble and he is very compliant so it could be worse. We rarely go out as dad also likes to get up late and getting him out nowadays is a bit of an effort. I can't take him out for lunch anymore because he has a stent and has to be careful what he eats. He can't walk far so I have to take him in a wheelchair if we do go out and to be honest he doesn't want to go out anyway.

    My only suggestion is to keep posting here because you can say whatever you like and people will understand.
     
  4. Sarah Wrann

    Sarah Wrann New member

    Dec 23, 2017
    2
    Hi there

    My question is based on a very sad and worrying observation. I have visited various homes and Mum tried one a few months ago. She got very depressed and isolated. None of the other residents even said hello to her. She is in respite again and trying a different one. But guess what I noticed that the residents hardly acknowledge each other. This is on the residential floor with only mild or no dementia. This is terrible.. is this the norm? If so what is our society coming to?
     
  5. lis66

    lis66 Registered User

    Aug 7, 2015
    239
    I to care for my mum who has ad for six years ,she still lives with dad,who's 85 ,and since he had urosepsis in January ,I do everything for him now to.Ive been off work since January,am receiving councilling,have very little support and feel numb inside what does normal feel like !! Xx
     
  6. Guzelle

    Guzelle Registered User

    Aug 27, 2016
    355
    Sheffield
    I often feel lonely and isolated as does my OH. He finds it hard to socialise because of his dementia and deafness. He finds it hard to keep up with conversations. But he doesn’t like me talking to people either and is always wanting to go if I am talking to someone. I can’t relax or have a good chat as I am always on edge.

    If I do go out alone I never know what mood he will be in when I get back. He can be verbally and physically abusive.
     
  7. Antipat

    Antipat Registered User

    May 20, 2019
    16
     
  8. Antipat

    Antipat Registered User

    May 20, 2019
    16
    I am not sure where you are located.. I live in Mantioba Canada and here we can get respite care. A home care worker comes and stays with our dementia patient and we can go out for a short time .
     
  9. Antipat

    Antipat Registered User

    May 20, 2019
    16
     
  10. Antipat

    Antipat Registered User

    May 20, 2019
    16
    It is a very boring and lonely life … My OH? not sure what that is … it is my husband I care for.... he is not at all eager to go out anywhere... Not even to the yard... He used to love to be outdoors.... I have a bit of help … but they don't come when it is a stat holiday, like tomorrow. I just lost my twin sister, who was the greatest support , and while I was dealing with her death and funeral, I put my husband into a care facility . I was crying when I put him in, and again when I picked him up. I missed him terribly . For about 2 days, then I wished I could take him back there
     
  11. safray

    safray Registered User

    Feb 2, 2017
    32
    NOT A REPLY My loneliness is worse now since moving 250 miles 4 years ago to be nearer our family. They have been very helpful but all have full time work. We are both in our 80's and find it difficult to make new friends, my husband does not accept he needs someone in the house if I should go out, but I really cannot leave him and of course where can an elderly lady well into her 80's go on her own?
     
  12. Baggybreeks

    Baggybreeks Registered User

    Mar 22, 2017
    75
    Scotland
    It would be difficult but if you can get your husband into a day care centre, at least one day a week, if you have have some where, or a community centre which you can access together.
    Also social service, or Alzheimer link worker , but you must let them know you can’t cope. That’s the worst thing, but your health counts too.
    It’s hard when one can’t manage, and sadly it comes to the point when one can’t.
    My husband became very difficult with mixed dementia and was sectioned to a mental hospital for my safety. And I was so upset. My life changed dramatically, alone in the house and exhausted.
    He died in January after suffering from dementia for 6 years, he was 74.
    I am alone and trying to live without him. So difficult.
    I wish I could still have him even with the illness.
    So try to find some social club for yourself , help with your husband, and maybe make new friends.
    I have friends that I have made through sharing the same problems.
    I wish you all the best and want to let you know that there is hope and help out there. Good luck, and keep positive.
    And post how you get on, there are friends online.
     
  13. HarrietD

    HarrietD Administrator
    Staff Member

    Apr 29, 2014
    4,823
    London
    Thanks to everyone who's asked a question or shared their experience on this thread so far. I've passed your questions onto Angelo and Simon, and they'll do their best to answer as many as possible during the session on Wednesday.
     
  14. HarrietD

    HarrietD Administrator
    Staff Member

    Apr 29, 2014
    4,823
    London
    Hi everyone, and welcome to our expert Q&A on loneliness, isolation and staying connected :) Simon and Angelo from our Knowledge team have kindly offered to answer your questions on this topic until 4pm today.
     
  15. SimonW

    SimonW Registered User

    Nov 22, 2018
    19
    Male
    Norfolk, UK
    This is a really great question as it illustrates the importance of other health conditions on quality of life in people with dementia. Many people start to lose their hearing as they get older, and this can have a big impact on their confidence in social situations. It’s common to make light of it and have a laugh when a person hears something the wrong way, but for most people affected it can be a real source of unhappiness and contributes to low self-confidence and lower mood. This might help to explain why your OH wants to avoid social situations, since they only result in him feeling awkward and excluded. And, depending on the type and severity of his dementia, he may not have the empathy or ability to recognise your need for social interaction. So instead he thinks, ‘I’m not happy. This makes me feel bad. I want this experience to stop.’

    An obvious place to start here would be to recommend that your OH have his hearing tested and gets access to a good set of hearing aids, if possible. This should hopefully reduce his feelings of social awkwardness and exclusion in social situations. If his hearing has been improved as much as it can be already, however, then the best thing you can do is try to understand the reasons why he is feeling ‘bad’ in these situations and address them as much as possible. So, ensure that whoever you are talking to includes him in the conversation, keep the level of communication relatively simple and easy to understand (by informing the other person how best to communicate and include him in the conversation). True, it may not be as enjoyable for you as a normal carefree chat, but probably it’s a lot better (for both of you) than him getting frustrated, angry, and then demanding that you break off talking.

    Hopefully your dementia support worker or adviser should have already provided you with some useful advice and resources on enabling good communication in your OH’s particular type of dementia (challenges vary depending on type and stage). So, if not, get in touch and then try to implement these techniques in conversations between you, and also with other people as much as possible.

    Lastly, it's worrying to hear that your OH can sometimes be abusive to you. Whatever your circumstances, it is essential that you feel safe in your own home. If you ever feel at risk of personal harm, it is very important that you contact your dementia support worker or social worker urgently to make sure that your level of risk can be assessed and managed effectively to ensure that you remain safe.

    I hope this helps. Best of luck. 
     
  16. AngeloM

    AngeloM Registered User

    Apr 10, 2015
    16
    Sorry to read that you’ve had such bad experiences with homes for your Mum. Unfortunately, we do know that some homes are better than others, and that they can vary greatly from one place to another. Sometimes this is due to staffing issues or inadequate staff training, but there are many other factors too. It might be worth speaking with the manager at the home where your mum is in respite to see whether they have any social events for the residents, and/or whether they have an activities coordinator. This can sometimes help in terms of getting people to talk to each other and be more sociable.

    You might find it useful to speak with one of our Adviser on the Dementia helpline about this too, as with more information they might be able to give more advice about approaches and strategies that you could try. You can find out more about them here - https://www.alzheimers.org.uk/get-support/national-dementia-helpline

    If it doesn’t seem as though the home are very receptive to your concerns, or if you feel it isn’t suitable and things are likely not to get much better, then it might be worth looking at other homes that might be more suitable. The Elderly Accommodation Counsel run a website called Housing Care which can be useful in looking for homes, and the Care Quality Commission are also useful to look at as they inspect homes to make sure they are adhering to government standards. You can find out more information on our website here - https://www.alzheimers.org.uk/get-support/publications-and-factsheets/selecting-moving-care-home

    All the best.
     
  17. SimonW

    SimonW Registered User

    Nov 22, 2018
    19
    Male
    Norfolk, UK
    Looking after two parents is really hard. Not just because of the increase time and workload, but also because it splits you emotionally even more than you were already. So more difficult decisions about who needs your time the most, who is in more immediate difficulty or distress, and who needs more quality ‘cheering up’ time.

    Urosepsis is a very nasty experience for anyone, let alone if they’re 85 years of age. If there were cognitive symptoms at the time, such as confusion and memory problems or delirium, it may take a while for him to fully recover, and it’s still only been four months. Hopefully he will recover as much as possible, which would be great for everyone involved. But sometimes this isn’t possible, particularly if the person was relatively frail at the time of getting ill, and this will mean a greater workload for you, at least for the foreseeable future.

    You haven’t mentioned having any peer support of your own. Perhaps a partner, sibling or good friend? If you do have such people around you, make sure you talk to them, use them, share the load. There is often a temptation to take everything on yourself. For example, “only you know how to care for your mother when she is having a bad day”, or “if I go out, I’ll only find everything a complete mess when I get back, so it’s not worth bothering”. This may be true right now, but given time anyone can learn how to look after a person with dementia (or your father) and sharing the care workload will enable you to widen the informal unpaid carer ‘team’ that takes care of your parents and allow you to start having more of a life again. Apologies of course if this isn’t applicable to your situation and you’re effectively on your own (although hopefully with some kind of care package from adult social care, along with a dementia support worker when you need advice, and other professionals?).

    If you are very much on your own – that is, you’re the only unpaid, informal carer for both your parents – then you need to be even more careful about ‘looking after yourself’. I know this expression is infuriating for sole carers, but this doesn’t make it untrue! You are at a much higher risk of burnout and depression than a carer who shares the workload with other family members and friends. There are often opportunities for respite care, paid for by social services, where professional carers can be arranged for anything from a few hours to a few days, or the person being cared for can spend some time away from home. And these can be invaluable opportunities for a family carer to ‘decompress’ and rediscover that there is a world out there that doesn’t revolve entirely around dementia care. So get in touch with your dementia support worker to investigate these kinds of opportunities, where available.

    I think it’s brilliant that you’re talking to a professional counsellor. This provides you with a safe place to offload your worries, grievances, and frustrations, as well as hopefully getting some good advice about how best to look after your mental wellbeing in your specific circumstances. One of the most challenging aspects of being a carer for a person with dementia is having to ‘suck things up’, repress your feelings, and remain calm and patient as much as humanly possible. But this can take a real toll – which you describe as ‘feeling numb’. It’s a really common feeling for carers, although it’s also a warning sign that your mental wellbeing is taking a hit.

    Get as much support as you can from anyone and everyone – your counsellor, your GP, Alzheimer’s Society, local carer support groups, social services, family and friends. Delegate, offload, share your burden – both for your own sake and also to allow you to look after your parents as well as possible for as long as possible. Use respite care, maximise your social care provision, and make use of charities where available. In your own case, you could try talking to MIND about how you’re feeling. They’re a great organisation and very used to dealing with depression in long-term carers. Also, the Carer’s Trust and Carers UK:

    https://www.mind.org.uk/
    https://carers.org/
    https://www.carersuk.org/

    Best of luck!
     
  18. AngeloM

    AngeloM Registered User

    Apr 10, 2015
    16
    I’m sorry to read about how difficult things are at the moment, and I’m very sorry to hear about your twin sister. Losing someone is always difficult, and it sounds as though your sister was a particular support to you while looking after your husband. You might find it helpful to speak to a grief counsellor about the emotions that you’re feeling, and Cruse Bereavement Care have a helpline which is very supportive – you can find more details at https://www.cruse.org.uk

    It can be very isolating if the person you are caring for does not want to go out very much, or at all. I’m not sure if you have looked at ‘sitting services’, but someone to come in and stay with your husband so that you can go out might be helpful. This would give you the opportunity to go out and see friends or just to take some time for yourself to have a break. You mentioned that you have a bit of help, so it might be worth asking them if someone could ‘sit’ with your husband either regularly or even just every now and again.

    I’m not sure if you are based in the UK (you mentioned the ‘yard’ and also a ‘care facility’ so you may be in the US/Canada), but if you are then social services may also be useful to get in touch with as they can carry out a needs assessment for both your husband and also yourself to see what care they might be able to arrange for you. You can find out more about these assessments here - https://www.alzheimers.org.uk/get-support/legal-financial/needs-assessment

    ( If you are not in the UK you may be able to find more information about similar assessments from a dementia charity based where you are. You can find details of who this might be here - https://www.alz.co.uk/associations )

    It might be a good idea to look again at respite care, or possibly longer-term residential care. I would advise calling our Helpline and talking this through with one of our Advisers, as it would be helpful to get more advice, information and support on this. There are a number of complex issues here and it would help to take the time to speak about them all. I wish you all the best and I hope you get the support that you need at this very difficult time.
     
  19. HarrietD

    HarrietD Administrator
    Staff Member

    Apr 29, 2014
    4,823
    London
    Thanks for the helpful answers so far both :) We've also had this come through via email:

    ‘How can we support the young who are living alone and struggling? I am 51.'
     
  20. AngeloM

    AngeloM Registered User

    Apr 10, 2015
    16
    I’m sorry to hear that you’re struggling, and being a younger person with dementia can involve challenges that may not be faced by an older person with dementia, such as having to deal with workplace issues.

    Some of our local services offer support for younger people with dementia, and so I would recommend getting in touch with your nearest service as they should be able to let you know what they offer and, if they don’t have suitable services, they should be able to let you know what else is available in your area. You can find out more about services for younger people with dementia, and can also find your local Alzheimer Society service, here - https://www.alzheimers.org.uk/about-dementia/types-dementia/services-people-young-onset-dementia

    You might also find it useful to speak with your GP surgery as they might know of groups or other services in your area. Social services may also be helpful in terms of what is available locally, as well as looking at if there is any support they can put in place for you directly.

    I would also recommend looking at Young Dementia UK - https://www.youngdementiauk.org/ - and also the younger dementia webpage at the Social Care Institute of Excellence - https://www.scie.org.uk/dementia/symptoms/young-onset/support-for-younger-people.asp - as these are both very good resources in terms of both information and support for younger people with dementia.

    As you may already know, there is also a section of Talking Point focused solely on younger people with dementia and their carers - https://forum.alzheimers.org.uk/forums/younger-people-with-dementia-and-their-carers.27/

    I hope these resources are helpful for you, and I wish you all the best.
     
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