Expert Q&A: Loneliness and isolation – Tuesday 30 Oct, 2-3pm

[Saun_A]

Are you experiencing loneliness and isolation? Do you care for someone with dementia or have dementia yourself? We are here to answer your questions on this emotive topic.

Our next expert Q&A will be hosted by Anne from our Helpline team. She will be answering your questions on Tuesday 30 October from 2-3pm.

Want to ask questions in advance, or don’t think you can make it? 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.

 

[Whisperer]

This thread has been viewed frequently but as yet no replies? I did not post initially as my concerns seemed far less than others who are on this forum. Well maybe if someone kicks matters off?

I recently had a night in hospital following a complication relating to day surgery. I got home with my sibling having kept a close eye on my mum, ensuring medications were taken, fluids drunk, etc. The surgery was a success, I am a little sore but in a short time all will be well. However after a few days at home I suddenly felt very low mentally, without apparently any reason. Sad enough to almost cry but apparently baffling why. Only with thought have I come to realise the cause. I spent a pleasant hour sat with other gentlemen as we waited for our procedures. The hospital staff were all really nice, helpful and explained why I was being kept in as a precaution. I had a chance to speak with my sibling away from mum, the conversation ranging beyond matters related to her care.

I realise now I had stepped back into the world as it is for most people. No repeated questions, no subjects to work around, no need to give repeated assurance, people laughing and interacting in a relaxed manner. Joking, talk of the country going to the dogs, what happened to United, etc. Now back home, me and mum and our unspoken friend of dementia. I have a part time night job of a few hours per week, which allows a limited amount of social contact, but currently I am off sick with the surgery.

Okay I gave myself a kick, realised the problem, etc, but reading, going for a walk, cooking a meal have failed to lift what I now realise is a sense of physical and emotional isolation. How do I keep this low level at bay? Having experienced two very low days without fully grasping why I do not want to repeat that in future. But the nagging thought I have Is this isolation and loneliness will grow over time as most Carers are exactly that, isolated except for a loved one who is most likely not the company they once were. Then feeling guilty, you need a kick in the rear end for this self pity.

Oh Dementia I wish I could get my hands on you to deal with, but you only show your face in the life of a precious loved one. If only we could both find isolation from you.

 

[lolly57]

I look after my 77 yr old brother who has vas dem and a multitude of other health issues,the only people I ever see are his carers who come for half an hour a day to shower him as he's doubly incontinent,we never see a soul unless its a dr or nurse I get a carer to sit with him for 4 hours once a week on a wednesday morning so I can hop on a bus and whizz round a supermarket and get shopping delivered.I can't always afford to go so I just stay home and chat with the carer,he was hospitalised recently after having a UTI for 15 weeks and 9 courses of antibiotics that failed,he ended up with sepsis,2 days after he was admitted I went down with carers burn out,flu chest infection ending in pleurisy for the full 3 weeks he was in,he had no visitors even on his birthday,bless him, I was too ill to see him,he came home last week and im still ill,in fact apart from his dementia,he's in better condition than me.we have no family (they all disappeared years ago when they heard he had dementia,we don't even know if they are still alive.I am home with him every day,and havent had a chance to go anywhere or meet anyone,and get no visitors either.

 

[Saun_A]

Thanks for those who have posted their questions and their situation. We have received another question by email. Quick note: All these questions will be answered on the day by our expert, Anne.

Here's the question that came in by email:

Hi, we are going for DementiA Friendly town status and applying for funding for projects to counter loneliness.

Do you have any measures of lonliness you could point to and any benchmarks.

 

[Sunseeker1977]

Hi I am not a regular poster on this forum but read it regularly for ideas and also to realise that I am not alone! My wife is 64 and I have been caring for her for 8 years now ... I am fully aware of the unpredictability of this dreadful disease and generally with support from family and day care ... I cope reasonably well! However I get very depressed when I think of what could have been ,,, the idyllic retirement !! and find myself getting unreasonably bitter and jealous when I see happy older retired couples enjoying social events and holidays together .... all the things that we had planned for ourselves!! .... I get this feeling of hopelessness and overwhelming depression when I think that this is my life .. this is our life ..and it can only get worse !! My health has started to suffer and I know as her dementia progresses that I will not be able to care for her much longer ... that also deepens my depression as she is my whole reason for being! I have a narrow shrinking life with her ... but I will have no life without her!! I am very very lonely and have no light at the end of my tunnel.
(Incidentally I do have friends and hobbies of which I still see and do .... but they feel shallow and worthless without my wife sharing them with me)

 

[AliceA]

Lonely? Am I lonely? This is a question I ask my self.
My doctor suggested I might be depressed.
The situation depresses me, it seems the deeper we go the less contact we have outside the situation.
That feels lonely.

I am lonely to an extent, even though I can and do enjoy my own company.
I say to an extent because when I feel less buoyant I tend to keep to myself, I realise the danger of that. I know how I used to combat it.
I ask myself what would make it better now, I used to go to interesting talks, to exhibitions, study.
No longer. We had to give up the car, we used the bus.

We always met people we knew, of all ages, we mixed, we looked out for each other.
We might go to town have a coffee, pretend we were on holiday. We saw a morning film, greet regulars, go for the occasional lunch in a friendly cafe.
They were patient with the man I love and care for, I could relax.

I realise loneliness hit me when the bus was taken away, we no longer could decide to go out. If my man was a bit slow no matter we could catch the next one.
The fortnightly community coach, means an early start, too early for us. Early starts cause anxiety and hassle.
It gives two hours so is not long enough to see a senior film, it is too long on a cold day, there is no choice of catching an early bus.
The times are fixed and rigid.

The government talks of a commission into loneliness. GP are going to prescribe activities, such as cookery classes! Hardly any good if one cannot get to them, not that I need cookery classes, gardening or any other bright idea from pie in the sky.
I just need independence. I used to talk to people as I travelled, I am a good listener. I helped combat loneliness in others.

So am I lonely? I miss my friends who have died or are too ill or old to meet up.
I miss the equal relationship we once shared. I am tired of going it alone. I want to care but it zaps my energy.
Loneliness is like a fog, creeping up.

Lonely? Well, up to an extent BUT I am angry that I have been cut off from society for the lack of transport, of combatting my own lonely feelings by reaching out to others.

Local services, the librarian, the post office, local shops all added to community.
A friend had to give up her volunteer work in a charity shop when the bus was axed. She said that to her surprise customers were in tears at her leaving, as one said she cheered them up.

 

[Saun_A]

Thank you all for your questions thus far. If any of you would prefer to contact us privately, then please email talkingpoint@alzheimers.org.uk with your question. We can post on your behalf on this thread without disclosing your username or any other personal details. You may even send a private message to Alzheimer's Society with your question and we will post it here on your behalf.

One of our previous Q&As on this topic covered information on how to keep in touch with family members, where to find help when you find yourself in isolated and lonely situations and how we can help you cope. I hope it will be useful for you to see what kind of queries others have raised. Feel free to post on this thread or contact us in confidence by the methods mentioned above. Thank you.

 

[Saun_A]

We've had another question by email. Please keep them coming. Here it is:

I am 84. My husband is 90 and has Vascular dementia. His main problem is memory, or lack of it. My family live close so we get visitors 2 or 3 times a week and sometimes are taken out for lunch. I drive and also take him out for wine or lunch twice a week.
I can't say I'm lonely but do miss having a proper conversation. It seems harder than living alone would be as I have another person here, yet who isn't really here.
I saw a counsellor for 10 sessions recently re; anxiety, who was very helpful. It was so good to be able to talk freely, open up, and use my rusty intelligence.
My family think we should join dementia friendly groups ( he gets anxious about me if he is not with me) . They can't seem to understand when I say the thought of spending time with other carers, and their loved ones who are probably further down the line than my husband, simply depresses me more. Apart from which, my husband would refuse to go.
I don't mean to sound ungrateful to all the lovely folk who set up the groups and work in them. I'm sure they are a massive comfort to most people. So am I odd in not wanting to be part of them?
I've told my family about Talking Point and that I can get any info and support I need from it, but they say it's not the same as talking face to face. |'m starting to feel guilty about not doing my best. I know they want what's best for both of us and I try their patience when I dig my heels in and want to do it my way.
I don't suppose this message will come under the topic of loneliness?
Thank you for listening

 

[Saun_A]

We have another question sent to us by email. Here it is:

This is late because caring has been full on as a 24/7 carer.

My question is how can be pressure for a return of services that helped people to not feel as lonely.

(Accepting we all have periods, even in a crowd, to feel lonely.)

These things are local shops, libraries and services if possible within easy reach. Local Public transport that becomes more than a bus. People chat, exchange information feel connect.

Do you think loneliness is really being disconnected to likeminded people?

 

[tryingmybest]

As sole carer for 4 years to my Mum and living so rurally in a tiny hamlet, despite being a very positive upbeat person, I do get lonely and, to be honest can feel a bit depressed at times.

Mum has lost nearly all her speech now too, so I can't communicate with her like I used to. I do take her out everyday just for a change of scene (although this is getting harder the more she declines) and when somebody chats to us I probably tend to go overboard and burble on!!

I think for those of us caring alone and living rurally where there are no day centres or activities (all 30 miles away) and with Mum being self funded, there is no help from anyone and so we are just left to get on with it. I expect there are many in our situation.

 

[Saun_A]

Hello everyone and welcome to this month's Q&A session on loneliness and isolation.

We have Anne with us from our Helpline team to answer your questions on this emotive topic.

We will do our best to answer all your questions and they will be answered in the order in which we received them.

Please don't hesitate to ask your questions during this session. Over to you Anne.

 

[Anne M]

Hi, I'm Anne a helpline advisor here at Alzheimer's Society. I will be answering any questions you have today on the topic of loneliness and isolation. Please feel free to post any questions or comments that you may have and I will do my best to answer them.
Kind regards,
Anne

 

[Izzy]

I don't think that this is so much a question but an observation.

My husband died just over two years ago. I have lots of friends and have established a good social life. I don't have close family living near me but I do have good support from close friends. It's not that I sit at home by myself doing nothing. Amongst the hustle and bustle of my new life I still feel lonely, especially in the evenings. I think it's because I want back the times I had with my husband. I don't think there's any answer to this other than I suppose time might make things easier.

 

[Anne M]

This thread has been viewed frequently but as yet no replies? I did not post initially as my concerns seemed far less than others who are on this forum. Well maybe if someone kicks matters off?

I recently had a night in hospital following a complication relating to day surgery. I got home with my sibling having kept a close eye on my mum, ensuring medications were taken, fluids drunk, etc. The surgery was a success, I am a little sore but in a short time all will be well. However after a few days at home I suddenly felt very low mentally, without apparently any reason. Sad enough to almost cry but apparently baffling why. Only with thought have I come to realise the cause. I spent a pleasant hour sat with other gentlemen as we waited for our procedures. The hospital staff were all really nice, helpful and explained why I was being kept in as a precaution. I had a chance to speak with my sibling away from mum, the conversation ranging beyond matters related to her care.

I realise now I had stepped back into the world as it is for most people. No repeated questions, no subjects to work around, no need to give repeated assurance, people laughing and interacting in a relaxed manner. Joking, talk of the country going to the dogs, what happened to United, etc. Now back home, me and mum and our unspoken friend of dementia. I have a part time night job of a few hours per week, which allows a limited amount of social contact, but currently I am off sick with the surgery.

Okay I gave myself a kick, realised the problem, etc, but reading, going for a walk, cooking a meal have failed to lift what I now realise is a sense of physical and emotional isolation. How do I keep this low level at bay? Having experienced two very low days without fully grasping why I do not want to repeat that in future. But the nagging thought I have Is this isolation and loneliness will grow over time as most Carers are exactly that, isolated except for a loved one who is most likely not the company they once were. Then feeling guilty, you need a kick in the rear end for this self pity.

Oh Dementia I wish I could get my hands on you to deal with, but you only show your face in the life of a precious loved one. If only we could both find isolation from you.

Dear Whisperer,

Thank you so much for your insightful words. I’m sure that there are so many carers out there that can identify with the feelings that you have expressed.

It’s wonderful that you have been able to pin point why you were feeling down, as we cannot have change without first having understanding.

I know that there are no magic wands and that we can’t make dementia go away or our loved ones well again. However small changes may be within our power.

You have identified how good you felt getting a break from caring, talking to others about things other than dementia and caring. This is not selfish or self-pity, this is your instinct telling you what is right for you, listen to it.

My advice is to access all the help and support that is available, ask friends and family (even if they don’t offer), get involved in community and voluntary groups, sign up for any services that they may have and of course access any professional help that is available to you from social services.

Join a class, try out a new hobby or activity. The most important thing is to schedule me time into your weekly or daily diary as a priority, this is not a luxury to be worked around. Self-care for carers is necessary to keep you in good mental and physical health so that you are there for your loved one. You cannot pour from an empty cup, so keep topping yours up.

Kind regards,

Anne (Helpline Advisor)

 

[Anne M]

I look after my 77 yr old brother who has vas dem and a multitude of other health issues,the only people I ever see are his carers who come for half an hour a day to shower him as he's doubly incontinent,we never see a soul unless its a dr or nurse I get a carer to sit with him for 4 hours once a week on a wednesday morning so I can hop on a bus and whizz round a supermarket and get shopping delivered.I can't always afford to go so I just stay home and chat with the carer,he was hospitalised recently after having a UTI for 15 weeks and 9 courses of antibiotics that failed,he ended up with sepsis,2 days after he was admitted I went down with carers burn out,flu chest infection ending in pleurisy for the full 3 weeks he was in,he had no visitors even on his birthday,bless him, I was too ill to see him,he came home last week and im still ill,in fact apart from his dementia,he's in better condition than me.we have no family (they all disappeared years ago when they heard he had dementia,we don't even know if they are still alive.I am home with him every day,and havent had a chance to go anywhere or meet anyone,and get no visitors either.

Dear lolly57,

I am so sorry to learn that you have been ill, I wish you a full and speedy recovery.

Burn out can be so common for carers as someone becomes physically and mentally exhausted prioritising their loved one’s needs above their own.

I cannot emphasise the importance of self-care enough. I recommend scheduling some regular self-care into to your diary and making that a priority.

Enlist all the help and support that you can if the form of family, friends, charitable and professional services.

The Care Act sets out rights and entitlements for carers. It states that carers have a right to regular break from caring (respite or holiday), they have a right to pursue interests and hobbies, a right to a social life and a good night’s sleep. Your local Authority has a responsibility to carers.

I do hope that this has been helpful. Please don’t hesitate to contact the National Dementia Helpline on 0300 222 1122 where I, or one of our other advisors will be available to answer any further questions that you may have or just to talk if that's what you need.

Kind regards,

Anne

Helpline Advisor

 

[Anne M]

Hi I am not a regular poster on this forum but read it regularly for ideas and also to realise that I am not alone! My wife is 64 and I have been caring for her for 8 years now ... I am fully aware of the unpredictability of this dreadful disease and generally with support from family and day care ... I cope reasonably well! However I get very depressed when I think of what could have been ,,, the idyllic retirement !! and find myself getting unreasonably bitter and jealous when I see happy older retired couples enjoying social events and holidays together .... all the things that we had planned for ourselves!! .... I get this feeling of hopelessness and overwhelming depression when I think that this is my life .. this is our life ..and it can only get worse !! My health has started to suffer and I know as her dementia progresses that I will not be able to care for her much longer ... that also deepens my depression as she is my whole reason for being! I have a narrow shrinking life with her ... but I will have no life without her!! I am very very lonely and have no light at the end of my tunnel.
(Incidentally I do have friends and hobbies of which I still see and do .... but they feel shallow and worthless without my wife sharing them with me)

Dear Sunseeker1977,

I’m so sorry to learn that your wife is living with dementia. It sounds like you are doing a wonderful job of caring for her.

I think it’s important to recognise your loss, similar to a bereavement, of your plans for your retirement and your future together. It is natural for you to grieve this loss. The type of grief that someone caring for a loved one with dementia experiences can be very different to grieving a death of a loved one, as you don’t get the same understanding and support. Grief or grieving is an important process for us to come to terms with our loss and this can include going through a period of depression. I advise that you speak to your GP and ask for some help and support on getting through this.

Lastly I would say, that although one may feel that hobbies and interests have lost their meaning without our loved one to share them with, it is important that you spend time doing things that you enjoy and spending time with people who make you feel good. Sometimes people find that their interests change and that things they used to enjoy no longer provide pleasure, so you may need to be creative and find new hobbies and interests.

You wife is very lucky to have someone so loving and supportive by her side through this journey, I’m sure that she would wish that you treat yourself with the same kindness as you do her.

Kind regards,
Anne (Helpline Advisor)

 

[Anne M]

Lonely? Am I lonely? This is a question I ask my self.
My doctor suggested I might be depressed.
The situation depresses me, it seems the deeper we go the less contact we have outside the situation.
That feels lonely.

I am lonely to an extent, even though I can and do enjoy my own company.
I say to an extent because when I feel less buoyant I tend to keep to myself, I realise the danger of that. I know how I used to combat it.
I ask myself what would make it better now, I used to go to interesting talks, to exhibitions, study.
No longer. We had to give up the car, we used the bus.

We always met people we knew, of all ages, we mixed, we looked out for each other.
We might go to town have a coffee, pretend we were on holiday. We saw a morning film, greet regulars, go for the occasional lunch in a friendly cafe.
They were patient with the man I love and care for, I could relax.

I realise loneliness hit me when the bus was taken away, we no longer could decide to go out. If my man was a bit slow no matter we could catch the next one.
The fortnightly community coach, means an early start, too early for us. Early starts cause anxiety and hassle.
It gives two hours so is not long enough to see a senior film, it is too long on a cold day, there is no choice of catching an early bus.
The times are fixed and rigid.

The government talks of a commission into loneliness. GP are going to prescribe activities, such as cookery classes! Hardly any good if one cannot get to them, not that I need cookery classes, gardening or any other bright idea from pie in the sky.
I just need independence. I used to talk to people as I travelled, I am a good listener. I helped combat loneliness in others.

So am I lonely? I miss my friends who have died or are too ill or old to meet up.
I miss the equal relationship we once shared. I am tired of going it alone. I want to care but it zaps my energy.
Loneliness is like a fog, creeping up.

Lonely? Well, up to an extent BUT I am angry that I have been cut off from society for the lack of transport, of combatting my own lonely feelings by reaching out to others.

Local services, the librarian, the post office, local shops all added to community.
A friend had to give up her volunteer work in a charity shop when the bus was axed. She said that to her surprise customers were in tears at her leaving, as one said she cheered them up.

Dear AliceA,

Thank you for such emotional words. You are so right, it's no use us talking about combating loneliness and searching for activities and support if no-one can get to them. Lack of infrastructure is one changes that the government needs to think about when introducing measures to combat loneliness.

It may be an idea for you to join our Fix Dementia Care Campaign. This is where members of the Alzheimer's Society share their personal stories to campaign for change at government level. Please see our website for more information on Fix Dementia Care.

Some local areas provide a community transport service, please contact us here at the helpline or search on our website for support near you.

Kind regards,

Anne

 

[Anne M]

I don't think that this is so much a question but an observation.

My husband died just over two years ago. I have lots of friends and have established a good social life. I don't have close family living near me but I do have good support from close friends. It's not that I sit at home by myself doing nothing. Amongst the hustle and bustle of my new life I still feel lonely, especially in the evenings. I think it's because I want back the times I had with my husband. I don't think there's any answer to this other than I suppose time might make things easier.

Dear Izzy,

Thank you for your comments. I am so sorry to learn about the loss of your husband.
It sounds like you are doing a good job of building a new life without your husband but that you are still grieving his loss.

It's ok to grieve and to miss your loved one and it is normal that you would feel lonely without him around. The important thing will be that you get the help and support that you need to rebuild your life.

If you feel that loneliness in the evening is becoming a problem you may arrange to do some activities during this time, to meet with friends or even make phone calls. I would also advise that you seek some support from your GP who may recommend bereavement counselling.

Please don't hesitate to contact us here at the National Dementia Helpline 0300 222 1122 where I, or one of the other advisors will be available to offer our support.

Kind regards,

Anne

 

[Anne M]

We've had another question by email. Please keep them coming. Here it is:

I am 84. My husband is 90 and has Vascular dementia. His main problem is memory, or lack of it. My family live close so we get visitors 2 or 3 times a week and sometimes are taken out for lunch. I drive and also take him out for wine or lunch twice a week.
I can't say I'm lonely but do miss having a proper conversation. It seems harder than living alone would be as I have another person here, yet who isn't really here.
I saw a counsellor for 10 sessions recently re; anxiety, who was very helpful. It was so good to be able to talk freely, open up, and use my rusty intelligence.
My family think we should join dementia friendly groups ( he gets anxious about me if he is not with me) . They can't seem to understand when I say the thought of spending time with other carers, and their loved ones who are probably further down the line than my husband, simply depresses me more. Apart from which, my husband would refuse to go.
I don't mean to sound ungrateful to all the lovely folk who set up the groups and work in them. I'm sure they are a massive comfort to most people. So am I odd in not wanting to be part of them?
I've told my family about Talking Point and that I can get any info and support I need from it, but they say it's not the same as talking face to face. |'m starting to feel guilty about not doing my best. I know they want what's best for both of us and I try their patience when I dig my heels in and want to do it my way.
I don't suppose this message will come under the topic of loneliness?
Thank you for listening

Thank you for contacting us here at the Alzheimer's Society,

I'm so sorry to learn that your husband is living with dementia. It is so common for carers to suffer from loneliness and isolation because they spend their time prioritising their loved one's needs.

If carer support groups do not feel right for you, that is fine, however, as you say that you do feel lonely at times and would like someone to speak to, it may be a good idea to introduce some measures to combat this. What works for you, will be individual to you.

It may be an idea to contact a local befriending service, where a volunteer may be able to spend a couple of hours a week with your husband and give you time to spend on you. Although your husband may be anxious at first, hopefully once he gets to know the befriender and gets used to the new routine that he will settle in.

You are doing a wonderful job of caring for and supporting your husband but please look after you. Research shows that loneliness and isolation can have a negative impact on our physical and mental health as well as our mortality. You will be healthier and live longer if you look after you.

Kind regards,

Anne

 

[Anne M]

As sole carer for 4 years to my Mum and living so rurally in a tiny hamlet, despite being a very positive upbeat person, I do get lonely and, to be honest can feel a bit depressed at times.

Mum has lost nearly all her speech now too, so I can't communicate with her like I used to. I do take her out everyday just for a change of scene (although this is getting harder the more she declines) and when somebody chats to us I probably tend to go overboard and burble on!!

I think for those of us caring alone and living rurally where there are no day centres or activities (all 30 miles away) and with Mum being self funded, there is no help from anyone and so we are just left to get on with it. I expect there are many in our situation.

Dear tryingmybest,

Thank you for your comments. It is so difficult being a carer where there are little or no support services available.

The Care Act 2014 sets out rights for carers which includes among other things, a right to regular breaks from caring and a right to pursue interests and hobbies.

When someone is assessed for a package of care by their local authority (LA), the LA are required to take the needs of the carer into consideration.

As you mum is self-funded, you may not have asked for a Care Needs Assessment but it's important that you consider your needs when arranging a package of care for her. The money spent is essential for keeping you in the best physical and mental health to be there for your mum.

Please contact us here on the helpline where one of our advisors will be available to provide information, advice or support.

Kind regards,

Anne