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How many carers feel lonely and isolated??

Philbo

Registered User
Feb 28, 2017
841
Kent
I understand exactly how you feel. I lived with my mum and looked after her 24/7, for 7 years. She wouldn't go out and often I was lucky to speak with anyone but her for days on end because I couldn't leave her alone. It's now 2 years since she went into a home and I thought things would be different too. But it isn't, I have to pluck up courage to even leave my home, while craving company. I force myself to go out alone, but always with butterfly in my stomach, trembling and racing heart. I'm relaxed when I go out occasionally with family though. I am lonely, but just don't feel like a normal member of society any longer. I am so drained and in my opinion mentally damaged myself now. I question my conversation capabilities and my own sanity now, I've lost all my confidence to the point that I can't even bring myself to go to my GP, I've seen how not understanding the professionals are towards carers too many times in my journey!
Hi Angela57

As others have said, finding/making opportunities to go out and socialise, is key to looking out for your own well-being?

For me, it has been a combination of dementia coffee mornings and a local pub:). My wife's aunt recommended the coffee mornings, held locally once a month, where although I don't think my wife got much out of it (her FTD affected her speech and cognitive abilities early on), it was so beneficial talking to other carers.

The pub has been the real life saver, not just because of the drink (honest):D. My wife (before getting dementia) had suffered for many years with anxiety and depression and was a real worrier. So she was not keen on socialising that much.

We did go to pubs occasionally, but I've never had a "local" in the 46 years we've been married. When I first realised that she may have dementia, I managed to get her to visit a few pubs to watch bands performing (excellent music scene here in East Kent). It helped that due to the dementia, she was actually becoming less anxious (perversely), so would go wherever I suggested.

Following the death of her mum, we started visiting a local pub in town, to keep an eye on her younger brother (it was his local) and quite quickly made some good friends with the landlords and pub regulars.

Well I have been amazed at the level of support and understanding those good folk have given my wife and I:). I can honestly say that without them, I would be in a whole world of darkness. Don't get me wrong, I still have times when I feel desperately lonely, but at least for the time being, I look forward to our weekends out.

So forgive my ramblings, but I would urge you to seek out any opportunity to get yourself out and about.

Kind regards.
Phil
 

kindred

Registered User
Apr 8, 2018
2,525
I understand exactly how you feel. I lived with my mum and looked after her 24/7, for 7 years. She wouldn't go out and often I was lucky to speak with anyone but her for days on end because I couldn't leave her alone. It's now 2 years since she went into a home and I thought things would be different too. But it isn't, I have to pluck up courage to even leave my home, while craving company. I force myself to go out alone, but always with butterfly in my stomach, trembling and racing heart. I'm relaxed when I go out occasionally with family though. I am lonely, but just don't feel like a normal member of society any longer. I am so drained and in my opinion mentally damaged myself now. I question my conversation capabilities and my own sanity now, I've lost all my confidence to the point that I can't even bring myself to go to my GP, I've seen how not understanding the professionals are towards carers too many times in my journey!
My darling, I do understand. I am still suffering from what I call prisoner mentality too. I'm glad you, we, can talk on here. Kindredxx
 

maryjoan

Registered User
Mar 25, 2017
1,513
South of the Border
I'm so sorry for replying too much to your post maryjoan. I just really understand and wish it was different for you and everyone else who feel so lonely, thanks to your caring for someone with dementia. For me, even the professionals only appeared to be concerned about my parents, never me. I was just my parents voice when they had lost the ability to explain for themselves. And it was lonely, I do feel for you, because my journey is ahead of yours at this moment, and my parents are now in homes. My advice to you would be get out as much as possible, and try to keep a little of your own life going before it's too late, if that's at all possible for you.

Take care

Ang
I do try very hard to keep something of myself going through all this.I am still doing some of my work albeit now from home - but he interrupts me all the time wanting to play scrabble ! He sits at the table with the game out, waiting....... I then cannot concentrate on my work.

I think the thing I cannot get my head around is that we have only been together for 8 years, are not married, and he first started being ill with pulmonary emboli just a few months after coming to live with me - and it has been downhill ever since.

I just feel very sad for what has happened to him and to us. And I think his family should be helping more - but there is only his son who will come down 3 or 4 times a year and takes him away for a weekend. I just feel very very sad.
 

Amethyst59

Registered User
Jul 3, 2017
5,764
Kent
Yes I do the weekend’s are lonely! I worked part time until last month and only gave up to look after OH as he was struggling on his own. But I am worried for my mental health because of the isolation. I am 59 and can’t get my state pension until I am 66. So I have to get used to mess money as well. He is going down hill, I notice a decline every week or so. My daughter does visit and go out with us during the school holidays as she is a teacher. He is so demanding of me, he hates it if I go out to meet friends even though he is capable of staying on his own for a few hours. I’m beginning to wonder if giving up work is the right thing to do, as at least I had a break from him when I was at work,
Your post caught my eye, as we are the same age. When my late husband was ill, I was lecturing for one day a week, and it was my day off from cancer. Eventually, we had to have someone to sit with my husband while I worked, but I carried on till the last few weeks of his life...and resumed about six weeks after his death. This time round, my present husband is in a care home, and , quite apart from me finding caring for someone with dementia much harder, I have not worked for five years. I stopped a few months after we married, as he had cancer and needed chemo. I never resumed work, as after his treatment we planned to travel, but he developed dementia and I became his carer.
Sorry, this is a long winded way of saying, how helpful it would be to me now, if I had continued to work. It would have been a break from caring, a way to contact and connect with other people, and hopefully a source of some satisfaction. I feel it is way too late for me to resume my previous career, and although I have many friends, hardly any are my own age. That, in itself, is quite isolating.
As you have only just left the work place, is there any possibility of returning, should you choose to? It might be worth considering.
 

canary

Registered User
Feb 25, 2014
13,894
South coast
Giving up work or continuing to work is a difficult decision.
I used to love my work and said it was like respite, so I fought hard to continue as long as I could, but there came a point, a couple of years ago, when caring responsibilities took so much of my time that there simply were not enough hours in the day. I took early retirement and have not regretted the decision - although I have regretted that there was no other way.
We can only do what seems to be best at the time.
 

BSN

Registered User
Oct 1, 2017
26
Giving up work or continuing to work is a difficult decision.
I used to love my work and said it was like respite, so I fought hard to continue as long as I could, but there came a point, a couple of years ago, when caring responsibilities took so much of my time that there simply were not enough hours in the day. I took early retirement and have not regretted the decision - although I have regretted that there was no other way.
We can only do what seems to be best at the time.
I gave up work to care for my partner, who has FTD. I really didn’t want to but had no choice as her behaviour was getting so bad.
I spent a year or so feeling very resentful. I am 51, no longer earning a salary or paying into a pension and missing the enjoyment and challenge of work.

I would find it very hard to go back to a similar role, as it’s been nearly 3 years now and things will have moved on - I won’t be ‘current’ anymore.

I get so much help from the experience of everyone on this site - I read it avidly. When I saw the discussion turn to work I thought I would chip in!

If I had my time again I would have paid for Carer’s and continued working for longer - hindsight is an amazing thing.

The stress and pressure I was under trying to juggle home, work and caring meant I really wasn’t thinking straight - I realise that now.

My OH has just been sectioned, for the second time and the Doctors advice is that she should go into full time care when she is released. So I will shortly have time for some form of work - especially as we have the care home fees to pay!

Thank you everyone for your advice over the past few weeks.

Bx
 

Amethyst59

Registered User
Jul 3, 2017
5,764
Kent
I gave up work to care for my partner, who has FTD. I really didn’t want to but had no choice as her behaviour was getting so bad.
I spent a year or so feeling very resentful. I am 51, no longer earning a salary or paying into a pension and missing the enjoyment and challenge of work.

I would find it very hard to go back to a similar role, as it’s been nearly 3 years now and things will have moved on - I won’t be ‘current’ anymore.

I get so much help from the experience of everyone on this site - I read it avidly. When I saw the discussion turn to work I thought I would chip in!

If I had my time again I would have paid for Carer’s and continued working for longer - hindsight is an amazing thing.

The stress and pressure I was under trying to juggle home, work and caring meant I really wasn’t thinking straight - I realise that now.

My OH has just been sectioned, for the second time and the Doctors advice is that she should go into full time care when she is released. So I will shortly have time for some form of work - especially as we have the care home fees to pay!

Thank you everyone for your advice over the past few weeks.

Bx
I don’t know anything about this...but is that how it goes? You work to cover care home fees? I thought that your wife would be assessed on her ability to pay for care?
 

canary

Registered User
Feb 25, 2014
13,894
South coast
Amethyst is right - the financial assessment for the care home should only include her finances (joint accounts are split 50/50).

Re the return to work - could you do anything like a refresher course?
 

john1939

Registered User
Sep 21, 2017
148
Newtownabbey
Hello, We tend to live in a little bubble disconnected with the world in general. I sometimes wander through a shopping mall just to experience mixing with the rest of the humanity.
To go off at a tangent now , I have found that when you have a life threatening illness people tend to avoid you as if it was contagious, when I told my wife's friends that she had Alzheimers they just shook their heads and said "How sad" and most tended to avoided her..
 

kindred

Registered User
Apr 8, 2018
2,525
I gave up work to care for my partner, who has FTD. I really didn’t want to but had no choice as her behaviour was getting so bad.
I spent a year or so feeling very resentful. I am 51, no longer earning a salary or paying into a pension and missing the enjoyment and challenge of work.

I would find it very hard to go back to a similar role, as it’s been nearly 3 years now and things will have moved on - I won’t be ‘current’ anymore.

I get so much help from the experience of everyone on this site - I read it avidly. When I saw the discussion turn to work I thought I would chip in!

If I had my time again I would have paid for Carer’s and continued working for longer - hindsight is an amazing thing.

The stress and pressure I was under trying to juggle home, work and caring meant I really wasn’t thinking straight - I realise that now.

My OH has just been sectioned, for the second time and the Doctors advice is that she should go into full time care when she is released. So I will shortly have time for some form of work - especially as we have the care home fees to pay!

Thank you everyone for your advice over the past few weeks.

Bx
Thank you all. Throughout the time I was sole carer for OH I continued to work, gradually cutting down the days and employing carers for a few hours a week. Frankly, it was hell and I doubt if I will ever be the same again. This is the other side of the story, of course. Everytime I came back from work exhausted from that, there was some fresh damage to the house, some fresh calamity, something awful for me to sort out. Twice I was locked out. The damage was substantial. It was traumatic, week in, week out. I am still suffering from the anxiety effects of it.
I still work, I'm 72, but I'm not sure I would if I had to go through that terrible time again ...
No one thinks straight under this kind of pressure, no one. I wonder if I think straight now.
Warmest, Kindred. sorry about change of font have noidea how it happened and don't care!!
 

karaokePete

Registered User
Jul 23, 2017
5,654
N Ireland
Is there anything like a befriender service in your area @maryjoan ?

We had my wife’s CPN out last week and she agreed to set up their version of this for my wife so that she can go out occasionally and I can then be left in peace for that while without the worry of her getting lost if she goes out alone, which she has done in the past.
 

Rosie4u

Registered User
Jun 22, 2017
219
South Manchester
In total agreement with all this.Never been lonely before in my life - I like being on my own. This is different -I’m scared and frightened of the changes in this man I love.
How many carers end up with mental health problems ? Will it be the next big scandal I wonder.
 

kindred

Registered User
Apr 8, 2018
2,525
In total agreement with all this.Never been lonely before in my life - I like being on my own. This is different -I’m scared and frightened of the changes in this man I love.
How many carers end up with mental health problems ? Will it be the next big scandal I wonder.
I should think an awful lot, Rosie. How can we not? It's repeated difficult experiences and shocks that make for mental health problems, especially if we can see no way out. I was scared and frightened all the time, too. All sympathy and fellow feeling. Geraldine aka kindred.xx
 

BSN

Registered User
Oct 1, 2017
26
Amethyst is right - the financial assessment for the care home should only include her finances (joint accounts are split 50/50).

Re the return to work - could you do anything like a refresher course?
As she is older than me she already draws her pension and that is what we live on. So I’m sorry I should have said I will need to go back to work to fund my living expenses when she goes into a home.

I think I will do something completely different than before and not as pressured or full on. The last three years have, on a positive note, given me time to reflect on what is important and I feel I have finished commuting into London for a 12 hour day!

Many thanks for your advice.
Bx
 

Roseleigh

Registered User
Dec 26, 2016
325
Yes I do the weekend’s are lonely! I worked part time until last month and only gave up to look after OH as he was struggling on his own. But I am worried for my mental health because of the isolation. I am 59 and can’t get my state pension until I am 66. So I have to get used to mess money as well. He is going down hill, I notice a decline every week or so. My daughter does visit and go out with us during the school holidays as she is a teacher. He is so demanding of me, he hates it if I go out to meet friends even though he is capable of staying on his own for a few hours. I’m beginning to wonder if giving up work is the right thing to do, as at least I had a break from him when I was at work,
Just go out anyway. Let's face it if he didn't have this disease and tried to stop you going out it would be called abuse. As you say he is ok alone for a few hours so get out and enjoy.
 

karaokePete

Registered User
Jul 23, 2017
5,654
N Ireland
THanks a lot Pete, I will look at that, and I am sure others will as well.......
I hope you and others get something from it.

When the CPN said she would set something up for us as an urgent case I thought it would be great. However, the CPN has promised others things that never happened so I’m not holding my breath. I’ll let everyone know how it goes if it happens.:)