does anyone one feel isolated ?
- Thread starter Gillgas
- Start date
hi Gillgas
welcome to TP
far too many of us, sadly, know exactly what you mean - sneaks up on you that you haven't been out for a coffee with a friend for weeks, holidays are a distant memory, and long lazy baths never happen - phone calls are all about care needs and no-one asks how you are ...
which is why this community is such a blessing as there is always someone around
as for getting some time for yourself - do you have any home carer visits, or a sitter; could your mum go to day care some days
best wishes
welcome to TP
far too many of us, sadly, know exactly what you mean - sneaks up on you that you haven't been out for a coffee with a friend for weeks, holidays are a distant memory, and long lazy baths never happen - phone calls are all about care needs and no-one asks how you are ...
which is why this community is such a blessing as there is always someone around
as for getting some time for yourself - do you have any home carer visits, or a sitter; could your mum go to day care some days
best wishes
Hi Gillgas,
Yes, I do
Not only do I feel isolated, but I have sadly realized that I'm wasting the last good years of my life.
I'm 65, my husband is 79.
I'm putting off doing what I like and at my age putting off means giving up
Yes, I do
Not only do I feel isolated, but I have sadly realized that I'm wasting the last good years of my life.
I'm 65, my husband is 79.
I'm putting off doing what I like and at my age putting off means giving up
Yes. Following my husband having a spell in hospital I realise also that he totally dominates my life and its very hard work. I love him to bits but time to review a little.
And, I have to admit, that now, on "the other side", my husband having died nearly two years ago, I still feel isolated! I'm not sure whether it became a habit, or a way of life or whether life just moved on around me while I stood still. And the thing is, I don't mind. I'm happy just occasionally taking part in things. I did the "life & soul of every gathering" bit when I was young, when my home was the in place to be. Wouldn't want to do it again. On the other hand, these days, I do have to actually push myself to go out at all. I could easily see myself becoming the crazy old hermit lady who never goes anywhere and frightens all the children in the neighbourhood! 
I`m with you Lady A.
After years of either being housebound or having to keep a strict time schedule I now have the freedom do go anywhere or do anything and I often don`t want to.
I have had to make a conscious effort to have something planned for most days because it would be so easy to stay at home and do nothing.
With hindsight I now see I should have arranged care and support much earlier but I know I`d still probably do the same again .
I do think there`s a big difference in caring for a parent or a partner.
After years of either being housebound or having to keep a strict time schedule I now have the freedom do go anywhere or do anything and I often don`t want to.
I have had to make a conscious effort to have something planned for most days because it would be so easy to stay at home and do nothing.
With hindsight I now see I should have arranged care and support much earlier but I know I`d still probably do the same again .
I do think there`s a big difference in caring for a parent or a partner.
Isolation
Yes ! my Mum a sprightly 83 feels the same she is a carer for my dad and she feels isolated I know. Even though I do as much as I can to give her respite and give her time to go out she has been ground down over the years. She has been a carer to Dad who had a brain injury 12 years ago and has recently been diagnosed with vascular dementia - which he has probably had longer than we all want to admit. She is a social lady and I encourage her to go out with her friends and do things with others. One thing that we are trying out is a dementia café just to meet with others and to give Dad an outing. Deep down she just wants to do things with my Dad !! and misses him as he used to be.
See if there is anything local you could join if you can get there, is there anyone who could visit to give you a break for a couple of hours once a week ? Keep going - all carers do a wonderful job
Yes ! my Mum a sprightly 83 feels the same she is a carer for my dad and she feels isolated I know. Even though I do as much as I can to give her respite and give her time to go out she has been ground down over the years. She has been a carer to Dad who had a brain injury 12 years ago and has recently been diagnosed with vascular dementia - which he has probably had longer than we all want to admit. She is a social lady and I encourage her to go out with her friends and do things with others. One thing that we are trying out is a dementia café just to meet with others and to give Dad an outing. Deep down she just wants to do things with my Dad !! and misses him as he used to be.
See if there is anything local you could join if you can get there, is there anyone who could visit to give you a break for a couple of hours once a week ? Keep going - all carers do a wonderful job
I am in a similar position at 62, with a wife of 76 whose needs and demands have come to dominate every waking hour. Not that we don't have good times together still. But I miss the company of others amongst whom I can talk and think about something else than dementia and the need to tiptoe around my wife in case, inadvertently, I set her off on a rant.
There is an upcoming Expert Q&A
Expert Q&A on 'Loneliness and isolation as a carer' on 4th of July from 2-3pm
https://forum.alzheimers.org.uk/sho...y-from-2-3pm&p=1425172&viewfull=1#post1425172
Expert Q&A on 'Loneliness and isolation as a carer' on 4th of July from 2-3pm
https://forum.alzheimers.org.uk/sho...y-from-2-3pm&p=1425172&viewfull=1#post1425172
Hi Gillgas
You have struck a chord with probably everyone on this site... I am 65 and TBO if, when I took on mum, I had known then what I know now I would have done it differently - especially as we moved to a bigger house to accommodate her and so I left behind my network of friends. I am healthy at the moment but, physically, so is mum. The thought of doing this job when I am 70 scares and depresses me. What happened to my planned retirement freedom? As it is I am 'mum's taxi' which is like being a young mum with a toddler but the job gets harder, not easier. Partner gets very fed up and now is at the golf club four days a week.
On the plus side, I joined an active carers' group locally and from that have got to know a whole group of people. I have some direct payments that allow for some respite for me - albeit only the odd hour or two - and that helps.
I guess empathy is about all I can offer.
You have struck a chord with probably everyone on this site... I am 65 and TBO if, when I took on mum, I had known then what I know now I would have done it differently - especially as we moved to a bigger house to accommodate her and so I left behind my network of friends. I am healthy at the moment but, physically, so is mum. The thought of doing this job when I am 70 scares and depresses me. What happened to my planned retirement freedom? As it is I am 'mum's taxi' which is like being a young mum with a toddler but the job gets harder, not easier. Partner gets very fed up and now is at the golf club four days a week.
On the plus side, I joined an active carers' group locally and from that have got to know a whole group of people. I have some direct payments that allow for some respite for me - albeit only the odd hour or two - and that helps.
I guess empathy is about all I can offer.
I think I feel more lonely now than I have ever done before?
My wife (PWD) and I are both 66 and 3 and a half years ago when she was first diagnosed, I realised that I needed to do something about getting some form of social life.
My wife's history of nerve problems, anxiety etc meant we did not socialise much but I managed to get her to start popping into one of the local pubs at the weekend (her mother had just passed away and we wanted to keep an eye on her younger brother [a bachelor] who used the pub.
Over time, we were made very welcome (most soon understood the circumstances) and it has become my/our sanctuary, if you like. Fortunately, my wife still enjoys it, though her deteriorating cognitive and language functions make it taxing at times.
Having rambled on about this, I still feel very alone - sure we have family and these friends but once away from these, I get little in the way of interaction from my wife. I can no longer share my thought, concerns, worries, joys and also miss just being able to relax!
We do get 3 hours a week where a respite visitor comes to sit with her, so I can pop out but I don't relax even then, as I worry whether my wife will be okay, as she is incontinent and the visitor does not do personal care.
Sure, I could buy in additional support but like others have said, it is a worry as to how your loved one will be treated or whether they will accept "strangers" getting involved with their care.
Stop the bus, I want to get off!!!
Phil
My wife (PWD) and I are both 66 and 3 and a half years ago when she was first diagnosed, I realised that I needed to do something about getting some form of social life.
My wife's history of nerve problems, anxiety etc meant we did not socialise much but I managed to get her to start popping into one of the local pubs at the weekend (her mother had just passed away and we wanted to keep an eye on her younger brother [a bachelor] who used the pub.
Over time, we were made very welcome (most soon understood the circumstances) and it has become my/our sanctuary, if you like. Fortunately, my wife still enjoys it, though her deteriorating cognitive and language functions make it taxing at times.
Having rambled on about this, I still feel very alone - sure we have family and these friends but once away from these, I get little in the way of interaction from my wife. I can no longer share my thought, concerns, worries, joys and also miss just being able to relax!
We do get 3 hours a week where a respite visitor comes to sit with her, so I can pop out but I don't relax even then, as I worry whether my wife will be okay, as she is incontinent and the visitor does not do personal care.
Sure, I could buy in additional support but like others have said, it is a worry as to how your loved one will be treated or whether they will accept "strangers" getting involved with their care.
Stop the bus, I want to get off!!!
Phil
I have found a lot of help & support from unexpected quarters as in friends & people who have experience of dementia.
Luckily I got care in a year & a half ago for my mum and this has helped a great deal. My mum has 4 care visits a day but I can see this increasing again.
She was formerly diagnosed this year with mixed dementia - Alzheimers & vascular dementia & there is no reasoning with her at all.
I live close by but cannot see her all the time as I suffer from depressive episodes & too much contact with her can trigger me off & I have to look after myself to be able to look after her - her dementia isolates her as most of her social circle have dropped off as they simply cannot deal with how she is, not that she had a large social circle before anyway and now she doesn't want to go out.
We took her out for Christmas Day dinner and it was awful - she played up at the table & was generally very cantankerous. She complains non stop how lonely she is but she won't go to day care. We have tried & tried, she just refuses!
Luckily I got care in a year & a half ago for my mum and this has helped a great deal. My mum has 4 care visits a day but I can see this increasing again.
She was formerly diagnosed this year with mixed dementia - Alzheimers & vascular dementia & there is no reasoning with her at all.
I live close by but cannot see her all the time as I suffer from depressive episodes & too much contact with her can trigger me off & I have to look after myself to be able to look after her - her dementia isolates her as most of her social circle have dropped off as they simply cannot deal with how she is, not that she had a large social circle before anyway and now she doesn't want to go out.
We took her out for Christmas Day dinner and it was awful - she played up at the table & was generally very cantankerous. She complains non stop how lonely she is but she won't go to day care. We have tried & tried, she just refuses!
Gillgas, yes yes yes!
I feel isolated and lonely much of the time. My Mum lives with me and she still manages most of her self care but relies on me for everything else. She is generally quite cheerful with everyone and 'puts on a show' for carers/sitters etc. With me at home she can be what we call passive aggressive, 'nobody wants you when you're old', 'I never thought it would come to this', 'I've done my best and look how I'm repaid' etc etc.
She forgets I am nearly 60 and still thinks of me as 18 with energy to match. A friend recently visited to tell us she was going to Mexico for a few weeks. Mum was all "oh how lovely, I always wanted to go there, make the most of it while you can". When I told her I was having a weekend in Margate and had got a sitter in her for her you would have thought I had told her I was going on a world cruise for 6 months. "You leave me at every opportunity". Plus tears of course. Like Margherita I feel to defer any little pleasure is not just putting it off but giving up all hope of living my own life again. I no longer work so my chats are mainly with neighbours, shop staff and the occasional and I mean very occasional outing with friends.
You see your thread struck a chord with everyone. A very common feeling. Try and make space for yourself and your sanity.
I feel isolated and lonely much of the time. My Mum lives with me and she still manages most of her self care but relies on me for everything else. She is generally quite cheerful with everyone and 'puts on a show' for carers/sitters etc. With me at home she can be what we call passive aggressive, 'nobody wants you when you're old', 'I never thought it would come to this', 'I've done my best and look how I'm repaid' etc etc.
She forgets I am nearly 60 and still thinks of me as 18 with energy to match. A friend recently visited to tell us she was going to Mexico for a few weeks. Mum was all "oh how lovely, I always wanted to go there, make the most of it while you can". When I told her I was having a weekend in Margate and had got a sitter in her for her you would have thought I had told her I was going on a world cruise for 6 months. "You leave me at every opportunity". Plus tears of course. Like Margherita I feel to defer any little pleasure is not just putting it off but giving up all hope of living my own life again. I no longer work so my chats are mainly with neighbours, shop staff and the occasional and I mean very occasional outing with friends.
You see your thread struck a chord with everyone. A very common feeling. Try and make space for yourself and your sanity.
If you not already had your weekend away, let me know if you want any recommendations for places to eat and drink in Planet Thanet
Gillgas, welcome to TP. I'm sorry to hear you are feeling overwhelmed and isolated.
Is there any support in place for you and your mother? I would encourage you to put something in place, and to take all the help you can get. Even help around the house for you might be a relief. This may be a place to help you get started: https://www.alzheimers.org.uk/info/20001/get_support
Nobody can reasonably expect to be the sole carer for someone else, 24/7, with no support or help ever, forever. Things happen. Situations change. What if you break your arm and can't care for your mother? Or need to go to hospital, or get sick yourself? The statistics about carers who predecease the person they care for, are pretty grim, and carers' burnout is not something to take lightly. TP is a great resource and I hope it will be helpful.
My mother (Alzheimer's, 75) lives in a care home now and I still feel like dementia has ruined my life and will continue to take over everything, unless I actively fight it off. I am definitely much more isolated than I was, pre-dementia. I've lost friends, hobbies, free time, a fair bit of sanity, a lot of sleep, and some of my good health, and gained weight and worry. I find TP to be a huge help, as is a support group near where I live. The few activities and friends I've manged to keep for myself, I hold onto as hard as I can, while struggling to return to some sort of "normal."
Definitely get some support and help for yourself, as well as for your mother, and do what you can to look after yourself. Best wishes.
Is there any support in place for you and your mother? I would encourage you to put something in place, and to take all the help you can get. Even help around the house for you might be a relief. This may be a place to help you get started: https://www.alzheimers.org.uk/info/20001/get_support
Nobody can reasonably expect to be the sole carer for someone else, 24/7, with no support or help ever, forever. Things happen. Situations change. What if you break your arm and can't care for your mother? Or need to go to hospital, or get sick yourself? The statistics about carers who predecease the person they care for, are pretty grim, and carers' burnout is not something to take lightly. TP is a great resource and I hope it will be helpful.
My mother (Alzheimer's, 75) lives in a care home now and I still feel like dementia has ruined my life and will continue to take over everything, unless I actively fight it off. I am definitely much more isolated than I was, pre-dementia. I've lost friends, hobbies, free time, a fair bit of sanity, a lot of sleep, and some of my good health, and gained weight and worry. I find TP to be a huge help, as is a support group near where I live. The few activities and friends I've manged to keep for myself, I hold onto as hard as I can, while struggling to return to some sort of "normal."
Definitely get some support and help for yourself, as well as for your mother, and do what you can to look after yourself. Best wishes.
Gillgas, have you registered as a carer with your GP?
I'm not sure if this scheme operates everywhere in the UK, but where I live (South-East) you can register with your GP, which will then give you access to carer support groups, which are staffed by trained support workers. I find my local group has been really good for general advice, sympathy and support, especially at the beginning of my life as a carer. I hope this helps. xx
I'm not sure if this scheme operates everywhere in the UK, but where I live (South-East) you can register with your GP, which will then give you access to carer support groups, which are staffed by trained support workers. I find my local group has been really good for general advice, sympathy and support, especially at the beginning of my life as a carer. I hope this helps. xx
You describe almost a mirror image of our PWD!
Although my husband & I share the care of his mother we are still fairly isolated & Oh, so restricted in what we can do.
When we do see friends or family we find that most if what we talk about is our life with dementia; it becomes all consuming doesn't it!
I have to say though that we are very fortunate in that we're getting a two week break as from Monday which Social Services have arranged.
Amy, I remember asking about this specifically, when I was my husband's sole carer at home. What would happen if I got sick? If I had to go into hospital? What if he actually did seriously injure me one of these times? I was told that there was nothing in place for that situation. There were no emergency respite facilities available, and if there was no one else to take care of him, then he would have to be admitted to the hospital too!
How true
Each day I feel more and more alone. I care for my OH with no outside help, although the advice from others on TP has been invaluable. I am healthy and thought I was a strong woman but this shrinking world is really getting through to me. Its not helped by my OH starting to be awake through the night. Wandering around and having all the lights on. Being tired during the day and having to respond to his fantasy world the rest of the time is difficult.
Sorry I can't offer help or optimism, just a rant. Take care and I hope things I improve for you soon
Each day I feel more and more alone. I care for my OH with no outside help, although the advice from others on TP has been invaluable. I am healthy and thought I was a strong woman but this shrinking world is really getting through to me. Its not helped by my OH starting to be awake through the night. Wandering around and having all the lights on. Being tired during the day and having to respond to his fantasy world the rest of the time is difficult.
Sorry I can't offer help or optimism, just a rant. Take care and I hope things I improve for you soon
