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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. SimonW

    SimonW Registered User

    Nov 22, 2018
    19
    Male
    Norfolk, UK
    Hi Lell,

    This question really sums up much of the difficulty of being a full-time, informal, unpaid care of a person with dementia.

    Lots of issues here:

    1. Social isolation. No longer working (financial constraints too?) so little contact with outside world. How to stay mentally healthy when all you do all day is care?
    2. Loss of the personality of the person you know and care for, which is both upsetting (it's a slow form of bereavement in many ways) and also frustrating as you want to have that normal interaction but it's just not happening.
    3. Lack of variety in daily life – predictable and monotonous indeed. Sounds like few opportunities to do enjoyable, stimulating or rewarding things – either on own or with father (who I'm sure would like to do stimulating things too - you mentioned that your father had nothing to get up for)
    4. Increasing risk of depression - both for you and potentially also for your father too.
    5. Decreasing motivation to care for yourself (hopelessness) - a potential symptom of depression.
    6. Lack of cover. No family or friends who could help - even just for a few hours?

    So that's a lot to cover, and unfortunately I can't address all of these issues in a quick Q&A session and also without knowing more about your circumstances (location, type and stage of dementia, family and financial situation, etc.). But I will try to point out some potentially useful resources for you without the 'patronising stuff' (by which I assume you mean sympathising but not actually being very helpful, or just pointing out the obvious!).

    Potential solutions:
    1. Online support: you mention your inability right now to get out. So get online (like you are doing right now) and interact with other people who understand what you're going through. This will potentially help you to feel more socially engaged with the world, and you could also help others by sharing your experiences. You've already found TP, which is great, but there are other online forums too, like ones for carers in general:

    https://www.carersuk.org/news-and-campaigns/ending-isolation-among-carers/be-a-member-end-isolation - Sorry Harriet for promoting the competition!) ;-)

    2. Respite care – even for a few hours or days. Apply for this through local social services with the help of your dementia support worker (or other charities) if needed. It can be a real lifeline to reconnect with the world and give you a break every now and then.

    3. Bring social activities to you: if you have family and friends who could break the monotony, invite them over! If they're not very knowledgeable or experienced with dementia, be patient, prepare them in advance, and then help them adjust for the first few times they come over. Some people may not enjoy the experience and will drop out, but others may enjoy it and potentially bring a lot of joy and stimulation to your father. Encourage them to bring over pets or young childen if possible, as they are often much easier and less socially demanding than adults. Just a thought anyway.

    4. Try to do fun things with your father
    It sounds like you're both really fed up and in need of doing enjoyable and rewarding things, but the local support groups are difficult to get to. This is a frequent problem, unfortunately. You could trying contacting the organiser and asking whether there is any flexibility in the schedule (early morning groups for dementia doesn't sound ideal, to be honest!). Alternatively, see previous suggestion about bringing people to you or else going out by yourselves. If right now you do very little that could be described as 'pleasant' then don't suddenly go from that to a visit to Alton Towers. Start incrementally by trying just to go out for walks, seeing the world and getting some fresh air (especially now the weather is getting nicer). See how this goes and then build confidence from there. But try not to do too much too quickly.

    There is so much to talk about here, but unfortunately I must get to other questions. Please do ring the helpline to discuss these issues further though.

    Best of luck.

    https://www.carersuk.org/help-and-advice/practical-support/getting-care-and-support
    https://www.carersuk.org/help-and-advice/your-relationships/social-relationships
     
  2. HarrietD

    HarrietD Administrator
    Staff Member

    Apr 29, 2014
    4,749
    London
    We've had another one come through email:

    ‘I care for my mum and live in a rural area. My mum struggles to communicate now, and I don’t really see anyone else. The nearest day centres and activities are miles away. What would you suggest?'
     
  3. HarrietD

    HarrietD Administrator
    Staff Member

    Apr 29, 2014
    4,749
    London
    Another email that came through ahead of today:

    ‘I was recently diagnosed, and I live alone. My family live quite far away, and my friends are either scattered across the world, or they’re not sure how to deal with my diagnosis and so have stopped visiting or calling. On top of that, I don’t know anyone very well in my community. How can I stop feeling so lonely?’
     
  4. AngeloM

    AngeloM Registered User

    Apr 10, 2015
    16
    I’m really sorry to hear that you’re feeling lonely. Getting a diagnosis can be difficult to process, and feeling lonely on top of that must be very hard.

    I’m not sure if you’ve contacted your local Alzheimer’s Society, but they may have support groups or social groups that you could join. These can be a good way not only of socialising but also of getting peer support from other people in a similar situation. If you go to our webpage here you can search for your nearest local service - https://www.alzheimers.org.uk/find-support-near-you

    Our Dementia Helpline and of course Dementia Talking Point are also very good resources, both for you and possibly for family members or friends. If they are unsure how to deal with your diagnosis then this could be a way for them to get a better understanding of dementia. You can find out more about the Helpline here - https://www.alzheimers.org.uk/get-support/national-dementia-helpline

    Our Side by Side service might also be useful to look at, as this matches volunteers with people with dementia. This would allow you to meet someone new and do something that you would like to do – for example, going to the shops or the cinema. You can find out more about Side by Side here - https://www.alzheimers.org.uk/get-support/your-support-services/side-by-side

    I hope this is helpful, and I wish you all the best.
     
  5. HarrietD

    HarrietD Administrator
    Staff Member

    Apr 29, 2014
    4,749
    London
    Here’s another email:

    ‘My husband passed away a couple of months ago. I’ve got to the stage where I can go out and about with friends, but I still feel deeply lonely at night when everyone else is asleep. I’m hoping that in time, it will get easier. Can you suggest anything in the meantime?’
     
  6. HarrietD

    HarrietD Administrator
    Staff Member

    Apr 29, 2014
    4,749
    London
    And another question that came through:

    ‘Since I started caring for my husband, I’ve been feeling more and more isolated from friends and family. They are very supportive, but they don’t really understand what it’s like. What should I do?’
     
  7. AngeloM

    AngeloM Registered User

    Apr 10, 2015
    16
    I’m so sorry to hear about your husband, and also that you feel so lonely at night. As I mentioned to another person on this thread, a grief counsellor could be very helpful for you, and Cruse Bereavement Care have a very good helpline. They also have a lot of resources on their website which might be useful to read too - https://www.cruse.org.uk

    Your GP might also be a good person to speak to, and they could also refer you to a grief counsellor for face to face sessions.

    I’m also wondering if you have mentioned how you are feeling to your friends, and whether it might be possible for them to help you in terms of having company overnight. If they know how you are feeling, and if it is practical, then someone may be able to stay with you (or you with them) every so often to help you through this difficult time.

    Talking Point is an excellent and supportive community, and as people log in from different time zones all over the world, you may find that you can get peer support throughout the night as well as during the day. This could be very helpful for you, as not only would this mean you can ‘talk’ to other people at night, but they may well be people who are in a similar situation to you.

    I hope these suggestions are helpful. Please do call our Dementia Helpline if you’d like any more advice or support, as I know that one of our Advisers would be happy to help. You can find them here - https://www.alzheimers.org.uk/get-support/national-dementia-helpline

    All the best.
     
  8. AngeloM

    AngeloM Registered User

    Apr 10, 2015
    16
    I’m sorry that you’re feeling so isolated since you started caring for your husband. Often people who haven’t experienced dementia can have trouble understanding what it can be like I’m afraid, and it can mean they don’t always know how important it is to give or offer the right kind of support.

    Your friends and family might find it useful to join Talking Point, or look on our website for information about dementia, as this may help them to get more of an understanding of the condition and how it is affecting both you and your husband.

    In terms of other support, you could contact your local Alzheimer’s Society office to see what services they offer, for instance carers support sessions or social groups. This can be a very good way of getting support and also finding out more about what is available in your local area. You can find your local office on our website here - https://www.alzheimers.org.uk/find-support-near-you They should also be able to let you know about other organisations locally who might be able to help, such as Age UK or Carers UK.

    Please do feel free to call our Helpline too, as our Advisers are there to give advice, information and emotional support, and they have a solid understanding of dementia and the effect the condition can have. Their details are here - https://www.alzheimers.org.uk/get-support/national-dementia-helpline

    All the best.
     
  9. SimonW

    SimonW Registered User

    Nov 22, 2018
    19
    Male
    Norfolk, UK
    Accessing support in rural areas can be a nightmare for several reasons: (1) transport can be a real limiting factor as public transport is generally patchy and slow, (2) there are fewer people in the local area who share your particular circumstances than in more built-up areas (especially the case for people with rarer conditions), and (3) family and friends are more likely to live some distance away, making it harder to share the work of looking after someone with dementia, and for you to get a break when you need one.

    The fact that there are fewer people with a specific condition within the local area may also mean that there are fewer services provided by the local authorities or charities, as these need a minimum number of people to remain cost-effective. This can lead to ‘support deserts’ (as I call them anyway!). My local area in Norfolk is very much like this, unfortunately – low population density, poorly-funded services, awful public transport networks and long distances between anyone and anywhere! For those that can’t drive it’s incredibly isolating.

    This may be telling you what you already know (sorry if so!) but it’s important to set these problems out to identify potential solutions – even imperfect ones.

    Looking at your question, it sounds like both you and your mother are in need of more social engagement. Although she may struggle to communicate these days, it’s very important to realise that she still has the same emotional need to feel connected to other human beings and to feel safe and secure. And obviously you too need to have meaningful and enjoyable interactions with other people to keep you from feeling lonely and isolated, to provide you with a sense of being part of the wider world, and preventing you from drifting into a clinically depressed state.

    So, what to do?

    I’ve already set out a few suggestions on other responses, including various online support groups and social networks, which can be invaluable for people in rural areas and respite care where available.

    You can also try to find local support groups and activities in your area – not just dementia-specific ones, but anything at all: pilates or tai chi classes, gardening clubs, religious meetings (if applicable). Get online and have a look at your local newspaper. They should have a ‘What’s On’ section that lists these activities and generally, even in support deserts like mine, there are things going on within a quick bus ride or even walking/wheeling distance. You may not get a massive choice, but any kind of social interaction will do both of you the world of good. Just make sure you ring up the organiser in advance and discuss your situation, check access, and brief them on anything they might need to know to be able to look after you.

    Lastly, try to contact friends (either of you or your Mum) and ask them over for a quick coffee and a chat. Be proactive. Don’t wait for the world to come to you. They may need a nudge! Some people will make excuses and not come, but others may do and enjoy the experience – especially if you brief them beforehand on your mother’s condition and how best to communicate. And also that they don’t need to worry about ‘saying the wrong thing’ – this is a really big worry that prevents people from getting involved.

    I hope this helps.
     
  10. HarrietD

    HarrietD Administrator
    Staff Member

    Apr 29, 2014
    4,749
    London
    And here’s one more email:

    ‘I’m a full-time carer for my wife, and I struggle to talk to my friends about my situation. We usually just end up talking about football. How can I get the courage up to talk to them about how I’m really feeling?’
     
  11. SimonW

    SimonW Registered User

    Nov 22, 2018
    19
    Male
    Norfolk, UK
    This sounds very familiar! You have the weight of the world on your shoulders yet, when you’re with friends, you find yourself talking about totally inconsequential stuff like football or TV shows.
    Dementia and other major life challenges can test the strength of social relationships. ‘You quickly find out who your real friends are’ is a common remark, particularly if you’ve recently had a diagnosis yourself.

    Good friends who know you well and care about your wellbeing can be an incredibly valuable resource during the long slog of caring for a person with dementia. Depending on how many of these kinds of friends you have, you’ll often find that your experiences are not unfamiliar to at least one of them. Dementia is a lot more common than most people think. And, if they haven’t been directly involved in caring for someone with dementia, they may well have had similar experiences looking after a relative with another terminal or degenerative disease, or a long-term disability. This should make them receptive and potentially understanding of the difficulties you’re going through and allow you to talk openly about your situation. People who haven’t had these kinds of life experiences may be less likely to understand how tough it can get at times.

    There’s also sometimes a culture of not talking about feelings – particularly between men. Or talking about ‘depressing stuff’. I think much of this is down to social context. Some social situations lend themselves to talking about this kind of thing more than others, so it can be good to try to pick the right one if possible. In my personal experience, smaller groups of good friends meeting up in a comfortable environment to catch up on each other’s lives can be good, or even 1-to-1 conversations, whereas it’s probably not so appropriate to do this when the general mood is more celebratory (for example, not at a wedding!). It can even sometimes come across as a bit selfish to impose your problems on an unwilling audience. So having good friends and the right context is really important. Ideally, a really good friend is willing to listen and support you on the phone every now and then (although most won’t be too keen on doing this several times per week!).

    So, let’s assume you’ve got the right kind of friends and an appropriate social context. How do you then broach the ‘heavy’ subject of caring for a person with dementia when the previous topic of conversation was whether Tottenham are likely to ever win the Premier League? Hopefully, at some point one of your friends will be able to tell that you’re a bit worried/tired/distracted and ask how you’re doing, or how your wife’s doing – particularly if they’ve been friends with you both for a long time. This is the time to talk about the difficulties you or your wife have been having. Don’t go straight into the really heavy stuff (unless you think you friend can handle it). Start with the general issues (“I just don’t seem to get any time to myself these days” or “I haven’t had a decent night’s sleep for as long as I can remember”) – things that don’t need any specialist knowledge or experience to understand or relate to. Your friend(s) can then choose to either encourage you to talk further about it (particularly if they’re genuinely interested or concerned) or they may decide to cut the conversation off.

    If they aren’t particularly encouraging, it might be because the conversation makes them feel uncomfortable – for whatever reason, perhaps they don’t feel equipped to talk about the subject, they’re worried about ‘saying the wrong thing’, or they perhaps rather selfishly don’t want to talk about ‘real life’ issues. But in many cases you can help by (a) educating them a bit about the condition (not formally of course, but try to be informative as well as talking about your difficulties), (b) reassuring them that they’re not walking on egg shells, and that you don’t mind them being a big ignorant about the subject or saying something a bit insensitive (for example, don’t get upset if they say something like “Well, your wife still looks really well…”). They may be trying to do their best, so be patient with them.

    So, I suppose my recommendation (for what it’s worth) is:

    1) Pick the right friends to talk about this with, if you can;

    2) Pick the right social situation (calm, informal, small groups, not an occasion associated with celebration and frivolity).

    3) Pick the right moment – ideally when a friend asks how you or your wife getting on (and not just when you’ve just met up – that’s not the same!)

    4) Start with relatively general and accessible topics that most people can relate to (e.g. sleep deprivation, no personal time) and only get down to the really heavy topics if the person appears to be genuinely interested or concerned. Allow them to choose their level of involvement.

    5) Be patient, especially if they have no knowledge of experience of dementia. To the uninitiated, the subject can appear very frightening, and they are likely to have many false preconceptions of what dementia is. So use the opportunity to inform as well as offload.

    I hope this helps. Best of luck!
     
  12. HarrietD

    HarrietD Administrator
    Staff Member

    Apr 29, 2014
    4,749
    London
    Ok, that brings us to the end of our session today. A huge thanks to @AngeloM and @SimonW for kindly giving your time for an hour to answer questions, and for your thoughtful answers :) I hope everyone reading this finds it helpful.
     
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