Carer - the pressure we put on ourselves

[Ellebe]

Wow! Thank goodness there are others out there who feel the same as I do! But isn’t it a shame? So many of us acting as Carers feeling lonely, frustrated and weary and no-one can really do much to help.
I feel for you all. Like some of you, I’ve never had children, my choice. Mum would have moved in with my sister and her husband, they were going to build an annexe for her. But my sister got sick and died in 2010. So the caring role falls to me with no other family help.
I moved my mother (89) in with me last year due to the pandemic and immediately realised how much more help she really needed. I hadn’t realised.
When I finally got Social Services to take notice (took a whole year!) they commented that we weren’t costing them anything so they should be able to help. It’s taking me as much to get used to having people in to my house as it is mum having people come in to get her up. She shouts at them, not me, and tells them to go away and leave her alone. They understand, whilst I find it really difficult.
We’re all epic! Absolute heroes! ?

 

[k.woodley]

I think this thread is especially important as the role of carer is often just seen by others in a positive light - 'what a saint you are' etc and we do that to ourselves. I just thought 'this is the role of the eldest daughter' - not so!
Some authorities also do not like the topic of how carers feel aired as they want only to put the negative side of dementia caring forward and somehow deal with the negative side of what carers' experience by 'observing and watching it doesn't happen' - that is a quote from a conversation with a counsellor. Did you know that up to 30% of CARERS experience abuse? That is not talked about enough - it is not enough for carers just to survive caring!. I have an article written abought my own carer abuse at the hands of my family - This level of abuse will not happen to everyone but if i can stop one case of it by speaking out I will

 

[superbat]

I put pressure on myself in any situation and have learned to deal with it fairly well. I managed people for a living and am teaching myself to cope with this and to make sure there is space for myself at the same time. We are not far down the road at the moment but my partner is 90 and memory loss and confusion have worsened considerably during the pandemic when the poor man has been riveted to his armchair not really understanding what on earth was going on.

 

[jennilin]

I think there is a huge difference between the two roles, though I've often wondered the same myself. As a parent you know that your child is going to grow up and become independent, as a carer you know that this is not going to happen and that their needs and dependency will increase. I think in our culture, because we don't tend to live in extended families, then the responsibility of care often falls on the shoulders of one or two relatives. This is a huge responsibilty for anyone to shoulder. In some other cultures (where I have lived) there is the extended family to help as all the family live in the same compound. There isn't as much of the loneliness that we can feel. Just my thoughts. Try not to be too harsh on yourself, it's a job that's a lot tougher than being a parent (even a single parent like myself).

Good reply x

 

[jennilin]

There is a huge element of sacrifice when becoming a family home carer and it is probably the most difficult most consuming role that you could possibly undertake , however It's not the sufferers fault and I'm guessing if the role was reversed we would also want the same support . It's such a shame that bearing that in mind, and how much we save the NHS and all the other support agencies, a little more support from the government would be welcome , but not holding my breath ... We are the forgotten army xxx

 

[Jan L]

Thanks all for your wise words and making me realise me comparing the role of carer to a parent is very different. What lack of sleep and pressure does to our way of thinking eh ?

As a Mother of two Sons and four Grand Daughters, with an active role in looking after two Nephews, I can confirm all that has been said about the difference between caring for Children and looking after my Husband. Looking back at life, I was at the end of my tether in 2015 when I eventually got my OH to the Doctors for diagnosis in the hope of getting some support, that is 6 years ago, I had two Sons in 6 years the oldest was at school dressing himself, looking after himself at the toilet and feeding himself the second the same nearly 4 and at play school. The last 6 years have seen my Husband deteriorate from needing a bit of help and support, to needing someone to live his life for him, cutting up his food, dealing with his toilet needs, getting up 3/4 times a night, showering and dressing him. Children in general want to please you and learn, my Husband just wants to hit out at me when I try to support him. Another important difference is the fact I was 30 when I gave birth to my youngest and am now 75. Things get worse by the week. My Mother always told me that however good or bad your children were is never lasted more that 3 weeks, I found that to be more or less true, I only know that with my Husband, everything stays to same or just deteriorates. No comparison. Thank you for readying.

 

[TNJJ]

Hi. I care for both of my parents. In different houses. It is very different from when I did it as a job. Dad has VD and can hardly walk now with a frame. Mum is struggling too. Dad has now become more incontinent. I can see the regression every day now. With my kids they have left home and can have good conversations. With dad it is getting less and less .So I know where you are all coming from.

 

[Thethirdmrsc]

I don’t think I put pressure on myself being a carer, but I feel the pressure due to trying to keep calm and carry on despite being sleep deprived, despite being the only one here 24/7, and I’m just fed up generally. At least when I was a parent, I had my husband and parents and friends to help take my girls for the day, and they had friends to go to and sleepovers, and they remembered what they did. Mind you, even my 3yr old granddaughter and my dog now come to the loo with me. Sometimes there doesn’t seem to be an escape.

 

[jennifer1967]

when i had my four children, my husband was a lorry driver so was not able to do much with them so i got them up and put them to bed and everything in between. didnt have family or friends to give me a break but i managed. i had to make decisions about everything. never came into bath or toilet with me.
looking after my husband is tiring but also they dont accept help but have to argue. at one point three of mine were teenagers at the same time so looking after my husband is a bit like that. the only problem is they go out and make their own life and my husband will take over my life. my kids might help one day but until then its up to me. my husband is 73 but my children are only 26-34 so young.

 

[Jan L]

Thanks all for your wise words and making me realise me comparing the role of carer to a parent is very different. What lack of sleep and pressure does to our way of thinking eh ?

As a Mother of two Sons and four Grand Daughters, with an active role in looking after two Nephews, I can confirm all that has been said about the difference between caring for Children and looking after my Husband. Looking back at life, I was at the end of my tether in 2015 when I eventually got my OH to the Doctors for diagnosis in the hope of getting some support, that is 6 years ago, I had two Sons in 6 years the oldest was at school dressing himself, looking after himself at the toilet and feeding himself the second the same nearly 4 and at play school. The last 6 years have seen my Husband deteriorate from needing a bit of help and support, to needing someone to live his life for him, cutting up his food, dealing with his toilet needs, getting up 3/4 times a night, showering and dressing him. Children in general want to please you and learn, my Husband just wants to hit out at me when I try to support him. Another important difference is the fact I was 30 when I gave birth to my youngest and am now 75. Things get worse by the week. My Mother always told me that however good or bad your children were is never lasted more that 3 weeks, I found that to be more or less true, I only know that with my Husband, everything stays to same or just deteriorates. No comparison. Thank you for readying.

when i had my four children, my husband was a lorry driver so was not able to do much with them so i got them up and put them to bed and everything in between. didnt have family or friends to give me a break but i managed. i had to make decisions about everything. never came into bath or toilet with me.
looking after my husband is tiring but also they dont accept help but have to argue. at one point three of mine were teenagers at the same time so looking after my husband is a bit like that. the only problem is they go out and make their own life and my husband will take over my life. my kids might help one day but until then its up to me. my husband is 73 but my children are only 26-34 so young.

@jennifer1967 I was fortunate that my Husband worked 8.30 am - 5.00 pm so was at home at night, he was a good Dad and did his share of getting up in the night and helping with the children when he was around, so perhaps I am spoiled, plus I only had two children to contend with. The real difference for me is, I am his sole Carer 24/7 and I am 75 now not 26. I often wonder who will look after me when I start the decline into old age after I have given the last years of my active life to look after my Husband. This terrible disease has affected our relationship for most of the last 20 years in one way or another.

 

[jennifer1967]

As a Mother of two Sons and four Grand Daughters, with an active role in looking after two Nephews, I can confirm all that has been said about the difference between caring for Children and looking after my Husband. Looking back at life, I was at the end of my tether in 2015 when I eventually got my OH to the Doctors for diagnosis in the hope of getting some support, that is 6 years ago, I had two Sons in 6 years the oldest was at school dressing himself, looking after himself at the toilet and feeding himself the second the same nearly 4 and at play school. The last 6 years have seen my Husband deteriorate from needing a bit of help and support, to needing someone to live his life for him, cutting up his food, dealing with his toilet needs, getting up 3/4 times a night, showering and dressing him. Children in general want to please you and learn, my Husband just wants to hit out at me when I try to support him. Another important difference is the fact I was 30 when I gave birth to my youngest and am now 75. Things get worse by the week. My Mother always told me that however good or bad your children were is never lasted more that 3 weeks, I found that to be more or less true, I only know that with my Husband, everything stays to same or just deteriorates. No comparison. Thank you for readying.

@jennifer1967 I was fortunate that my Husband worked 8.30 am - 5.00 pm so was at home at night, he was a good Dad and did his share of getting up in the night and helping with the children when he was around, so perhaps I am spoiled, plus I only had two children to contend with. The real difference for me is, I am his sole Carer 24/7 and I am 75 now not 26. I often wonder who will look after me when I start the decline into old age after I have given the last years of my active life to look after my Husband. This terrible disease has affected our relationship for most of the last 20 years in one way or another.

i am his sole carer. i dont have help although would have been nice. my youngest child is 26. im 54 and my husband is 73. alongside that im housebound and have a chronic pain condition.

 

[091558]

I think this thread is especially important as the role of carer is often just seen by others in a positive light - 'what a saint you are' etc and we do that to ourselves. I just thought 'this is the role of the eldest daughter' - not so!
Some authorities also do not like the topic of how carers feel aired as they want only to put the negative side of dementia caring forward and somehow deal with the negative side of what carers' experience by 'observing and watching it doesn't happen' - that is a quote from a conversation with a counsellor. Did you know that up to 30% of CARERS experience abuse? That is not talked about enough - it is not enough for carers just to survive caring!. I have added an article written abought my own carer abuse at the hands of my family - This level of abuse will not happen to everyone but if i can stop one case of it by speaking out I will

 

[Country lady]

Caring can present huge challenges and pressures.

My wife was diagnosed with early on-set dementia 4-6 years ago and the pressure that has created is immense. I had thought that in my early 60's I would be sharing the ups and downs of life and the tasks of daily living with my wife, not taking over every aspect of life for both of us.

I recall one morning when I was leaving my wife to day care and I had a brief word with a lady who was leaving her husband to the unit. She summed it up by saying "I didn't retire with the thought of becoming a 24/7 nurse." It summed it up quite well.

As others have said, children 'progress', whilst people with dementia tend to 'regress' - very different. Even tasks like changing a nappy and cleaning a child - very different to doing the same for an adult who may get agitated because of their embarrassment.

Even simple things like keeping the person amused/occupied is very different. Give a child a tot and a child can use it's imagination to occupy itself for ages. Due to a lack of cognitive ability a lot of people are hard to please as their condition progresses

I’m in the exact same position - I certainly didn’t foresee my retirement years as a full time carer for my husband.... if I stop & think too much about the future ongoing restrictions this role brings I just get sad .

 

[tsgc84]

My dad is now in a care home after 4-5yrs of hell, my mum has lost her job and is a mental wreck. I would never do it again. Never. She’s now on benefits and been told to find work at 63.

 

[JC51]

There is a huge element of sacrifice when becoming a family home carer and it is probably the most difficult most consuming role that you could possibly undertake , however It's not the sufferers fault and I'm guessing if the role was reversed we would also want the same support . It's such a shame that bearing that in mind, and how much we save the NHS and all the other support agencies, a little more support from the government would be welcome , but not holding my breath ... We are the forgotten army xxx

We are indeed.

 

[091558]

I think this thread is especially important as the role of carer is often just seen by others in a positive light - 'what a saint you are' etc and we do that to ourselves. I just thought 'this is the role of the eldest daughter' - not so!
Some authorities also do not like the topic of how carers feel aired as they want only to put the negative side of dementia caring forward and somehow deal with the negative side of what carers' experience by 'observing and watching it doesn't happen' - that is a quote from a conversation with a counsellor. Did you know that up to 30% of CARERS experience abuse? That is not talked about enough - it is not enough for carers just to survive caring!. I have added an article written abought my own carer abuse at the hands of my family - This level of abuse will not happen to everyone but if i can stop one case of it by speaking out I will

The content of the attachment has been a revelation to me.
I care for my husband with Alzheimers and find that hard for all the reasons everyone has recorded. I was also p/t carer for my 98year old Mother who lived nearby. My Mum seemed bright, had capacity, good memory and was loved by many.
A few years ago she seemed to be talking about and being very negative towards me. I shed many tears. Whilst she had sympathy towards my husband as she saw 'him' disappearing, she had no empathy towards me and had unrealistic expectations of what I 'should' be doing for her.
Told my children that she wanted to change her Will (she only had nominal savings) to exclude me as she considered I had enough money and had been left money by my in-laws. I had a small legacy about 30 years ago but I had shared it with my children.
It hasn't helped that my brother (who had been a close friend of my husband) also passed days before Mum's funeral. So difficult explaining to my husband again and again, him feeling upset each time. This was in Feb. so still raw.
Of course after a death things play on your mind. To read that my Mum's behaviour could have been a sign that dementia was quietly present, has lifted a burden off my shoulders. It was probably part of changes which were not apparent any other way. Has puzzled me for a while now but one of the case studies is so similar, I understand better.
Thank you
Bee

 

[Shedrech]

just to say hello @superbat and offer a warm welcome to posting on DTP ..... now you've started, do keep posting with anything that's on your mind

 

[Seaholly]

I've found one of the hardest things about being the main carer is just that so few people want to believe or understand what dementia does to a person. My mum is 'Auntie Seaholly' to so many people and we honestly thought at the beginning that more relatives would rally round and help (and then Covid came along!) but the truth is that they didn't. Too many still saw mum as 'Auntie Seaholly' which is lovely in a way, but they came and expected her to fuss over them and listen to all their woes and boasts and then they left, proclaiming how thrilled she was to see them, how they had clearly cheered her up, how well she looked and how it 'couldn't' be dementia - just shock at losing my dad.

What they didn't see was the blind panic and confusion on mum's face when she knew they were coming, or the anger and frustration directed at me when they left because they had outstayed their welcome and 'just yapyapyap!' in mum's words - followed by 'who are they anyway?' They didn't see how their magnanimous visits made her so exhausted and confused that predictably, that night, the night pants came down, the bed was thoroughly wet and all the sheets twisted and a very cold, wet mum was crying out for help because the bed had changed shape and was trapping her

Just before lockdown, they stopped coming at all, because they 'didn't want to upset her' i.e. it wasn't worth their while driving over just for 10 minutes being there for mum, rather than the other way around! Or the bend in the road where we live isn't safe to park and they don't want to have to walk all of about 10 yards back to the house....

Even worse, the so-called 'professionals' are just as blind at times and don't listen to the carer. 've had to fire 2 agencies, both allegedly accredited to work with people with dementia and one with the Alzheimer's Society logos plastered all over the office.

 

[IreneMary]

Wow! Although I am totally saddened by the fact that so many of us are struggling with caring for someone with Dementia - it is a small comfort that you are not the only one who feels trapped, fed up, a failure, cross, frustrated etc etc.
I feel this was my time to love life, to see the world (???) and to fade gracefully and laughingly into my dotage - instead ...I dont even want to put it into words.
If any of you saw the heartbreaking documentary about Kate Garraway - there was a Consultant who said something which I think is very poignant to us all...
"As loved ones we sit in a powerless position looking for things that look like the person we recognise - to give us hope and to keep us going - whilst moving one foot in front of the other still because life is still going on around us and thats a real challenge"
SO TRUE!
Hang on everyone - cant promise rainbows but maybe a little sunshine. xx

 

[Shedrech]

hello @IreneMary
a warm welcome to posting on DTP

I hope you get a chance to enjoy the sunshine today