Off Topic Being a Carer

[SAFCDRUM]

I'm putting this out there 1) because it's anonymous and 2) I can't afford a counsellor.

I'm an unpaid carer for my wife who has MS. I work full time (from home) and we have 3 kids. We have a paid carer for 14 hours a week.

It all seems to be getting much harder. She's not getting any better and doesn't do well in the heat. At the moment her mobility is bad and she has started getting tremors/shakes meaning eating/drinking independently, specifically, is becoming much harder.

Even though I'm meant to be working I still need to help her to bathroom and back. The carer is more food prep and house stuff. After work I have to sort tea and then all kids after school stuff which is 3 out of the 5 midweek days and weekends.

Recently, mainly because I've not been feeling 100%, I've really started to resent her being ill like it's her fault. If I've just sat down but then she needs something I'll huff and puff which assumingly doesn't make either of us feel very good. I barely go out as I need to be at home. I've been out on the drink once this year. I don't talk to my friends as they won't particularly understand.

What topped things off this weekend was on Saturday night when I saw my best mates out on a stag do to which I wasn't invited. Been a big group since early 90s going through drinking, engagements, weddings, kids, funerals. That one hurt.

Anyone else caring for someone? It's quite nice getting this all off my chest.

 

[Essayyeffcee]

I went through something similar with my mam before she died. She had Alzheimer's and I was caring for her in between working shifts - even at work I was phoning her to make sure she took her tablets whilst I was on the phone. I did arrange for someone to go in during the day to make sure she ate something and was washed but that was a waste of time. I even had arguments with my wife when she arranged for us to go away at times just so I had a break from everything.

Looking back, I was mentally and physically exhausted but I didn't acknowledge it at the time and on the day my mam died, I had a bit of a go at her saying that I couldn't do it anymore - 12 hours later she gave in, something I will always blame myself for.

Being a carer is the hardest thing anyone can do, especially if its a loved one. Watching someone you love fail like that is soul destroying and you do your utmost to try and keep them as the person you know and love.

After my mam died, I found myself going around and around in my head and not finding a way out until I spoke to a professional. After that it seemed that I found a way out and thinking straight again. If you ever need to talk my maiobox is always open

 

[Blond Bombshell]

I'm putting this out there 1) because it's anonymous and 2) I can't afford a counsellor.

I'm an unpaid carer for my wife who has MS. I work full time (from home) and we have 3 kids. We have a paid carer for 14 hours a week.

It all seems to be getting much harder. She's not getting any better and doesn't do well in the heat. At the moment her mobility is bad and she has started getting tremors/shakes meaning eating/drinking independently, specifically, is becoming much harder.

Even though I'm meant to be working I still need to help her to bathroom and back. The carer is more food prep and house stuff. After work I have to sort tea and then all kids after school stuff which is 3 out of the 5 midweek days and weekends.

Recently, mainly because I've not been feeling 100%, I've really started to resent her being ill like it's her fault. If I've just sat down but then she needs something I'll huff and puff which assumingly doesn't make either of us feel very good. I barely go out as I need to be at home. I've been out on the drink once this year. I don't talk to my friends as they won't particularly understand.

What topped things off this weekend was on Saturday night when I saw my best mates out on a stag do to which I wasn't invited. Been a big group since early 90s going through drinking, engagements, weddings, kids, funerals. That one hurt.

Anyone else caring for someone? It's quite nice getting this all off my chest.

God bless you marra and hope you can find strength and healing for the situation you and your family are in. Have you thought about contacting your local church? My pastor supports a lot of people in the community and would offer advice.
Blessings

 

[samwise_new]

i can kind of offer both sides.

my partner is a full time carer for her brother (had to give work up, she was not much better off for it) although i help where i can (brother has no control over his body and is chair bound, needs feeding, watering etc etc), i suffered chronic depression for many years then had my heart attack...it annoys the holy feck out of me having to watch her do so much, mainly i am annoyed at myself as i feel i should be doing so much more but my body and mind does not let me, we cannot make any plans for holidays to be 'ourselves' unless quite a bit of planning gets done before hand.

while she takes it on board i regulary sit and wonder why we can not just do as others do, just get in the car and go to the beach or visit a town somewhere, just book a couple of nights somewhere and yes, that resentment will raise it's head quite often because he will refuse to go into a home for respite even for a week so we can get a decent break, i am not sure if he even understands how much is done to accomodate him, a couple of decent breaks a year would be enormous...then i look at the lad and realise it is not something he goes out of his way to cause, he has not had great care since his original respite home closed down.

after my heart attack and that realisation that it can all end so sudden i have tried to get myself pulled round, do more and get out more but as ever there are a few circumstances that stop me...i have pretty much reached the conclusion that it is not his fault, her fault or my fault, life could be so much different in many ways so i try to take enjoyment where i can.

don't know if this helps but i cannot lay out some glowing report, it is what it is and we have to adjust and enjoy it where we can because it can be so much worse, while we all think we want it so much better it rarely is, you certainly are not alone in what you do or with your feelings marra, you are doing an excellent job and i can understand exaclty where you are coming from.

 

[happy feet]

Contact carers support in your local area. They will help you with loads of things.

 

[Smug in Boots]

I'm putting this out there 1) because it's anonymous and 2) I can't afford a counsellor.

I'm an unpaid carer for my wife who has MS. I work full time (from home) and we have 3 kids. We have a paid carer for 14 hours a week.

It all seems to be getting much harder. She's not getting any better and doesn't do well in the heat. At the moment her mobility is bad and she has started getting tremors/shakes meaning eating/drinking independently, specifically, is becoming much harder.

Even though I'm meant to be working I still need to help her to bathroom and back. The carer is more food prep and house stuff. After work I have to sort tea and then all kids after school stuff which is 3 out of the 5 midweek days and weekends.

Recently, mainly because I've not been feeling 100%, I've really started to resent her being ill like it's her fault. If I've just sat down but then she needs something I'll huff and puff which assumingly doesn't make either of us feel very good. I barely go out as I need to be at home. I've been out on the drink once this year. I don't talk to my friends as they won't particularly understand.

What topped things off this weekend was on Saturday night when I saw my best mates out on a stag do to which I wasn't invited. Been a big group since early 90s going through drinking, engagements, weddings, kids, funerals. That one hurt.

Anyone else caring for someone? It's quite nice getting this all off my chest.

Here's some advice mate.

Talk to your mates, your family, her family, the neighbours, local authorities, Church, your MP and anyone else who should be interested and concerned. If they're not 'particularly understanding' tell them you're disappointed and f**k them off out of your mind.

Concentrate on who's left and ask how they can help, in whichever way, and take their help. When that happens see if you can get away for the day even if it's walking round your town, going to look at the school you went to or just having a pub crawl round your old haunts.

People should help each other otherwise it's all a waste of time ...

... if all else fails meet up before the next match and have a drink on me, I've had loads of help from loads of great people and don't feel the least bit embarrassed because I'll always help people when I can.

As my son always says, 'Nobody ever said life is fair'.

Sometimes it's definitely not but it doesn't mean it's your fault.

 

[Downeys Loup]

Sounds like you’re getting burn out and need need some respite. My wife has a chronic illness but nowhere near at your level and our kids are all but grown up so I can only imagine. But sticking in there and doing the graft you are makes you a truly special husband and dad. Not everyone would or could do what you are doing. You’ve probably already seen this but link below is to a carer support group that may be able to help you.
https://sunderlandcarers.co.uk/
Best of luck marra, it’s not easy reaching out and a real show of strength to do it.

 

[Best uncapped Keeper]

I care for my other half but nowhere near as tying or as trying as your situation. She has degenerative arthritis and a heart condition so limited mobility but she can get about in a wheelchair. We are in County Durham and there is the Durham County Carers Support. Telephone 0300 005 1213. Website www.dccarers.org. Email [email protected]. If you are in Co Durham they should be able to help and if not I am sure they will have contacts for you where you live.Good Luck

 

[Smug in Boots]

i can kind of offer both sides.

my partner is a full time carer for her brother (had to give work up, she was not much better off for it) although i help where i can (brother has no control over his body and is chair bound, needs feeding, watering etc etc), i suffered chronic depression for many years then had my heart attack...it annoys the holy feck out of me having to watch her do so much, mainly i am annoyed at myself as i feel i should be doing so much more but my body and mind does not let me, we cannot make any plans for holidays to be 'ourselves' unless quite a bit of planning gets done before hand.

while she takes it on board i regulary sit and wonder why we can not just do as others do, just get in the car and go to the beach or visit a town somewhere, just book a couple of nights somewhere and yes, that resentment will raise it's head quite often because he will refuse to go into a home for respite even for a week so we can get a decent break, i am not sure if he even understands how much is done to accomodate him, a couple of decent breaks a year would be enormous...then i look at the lad and realise it is not something he goes out of his way to cause, he has not had great care since his original respite home closed down.

after my heart attack and that realisation that it can all end so sudden i have tried to get myself pulled round, do more and get out more but as ever there are a few circumstances that stop me...i have pretty much reached the conclusion that it is not his fault, her fault or my fault, life could be so much different in many ways so i try to take enjoyment where i can.

don't know if this helps but i cannot lay out some glowing report, it is what it is and we have to adjust and enjoy it where we can because it can be so much worse, while we all think we want it so much better it rarely is, you certainly are not alone in what you do or with your feelings marra, you are doing an excellent job and i can understand exaclty where you are coming from.

Good post from one good bloke to another ...
... none of us are perfect but I doubt we'd ever turn our backs.

And if someone would then balls to them.

 

[samwise_new]

Good post from one good bloke to another ...
... none of us are perfect but I doubt we'd ever turn our backs.

And if someone would then balls to them.

exactly that mate (as well as in your earlier post).

i found during my depression how many friends i had, despite me constantly reminding them of problems they never showed interest...maybe i thought a hell of a lot more for them than they did for me and it took a while till the 'feck you' started and i then felt so much better.

 

[Smug in Boots]

exactly that mate (as well as in your earlier post).

i found during my depression how many friends i had, despite me constantly reminding them of problems they never showed interest...maybe i thought a hell of a lot more for them than they did for me and it took a while till the 'feck you' started and i then felt so much better.

I count myself lucky because I have friends, scattered to the winds to be fair, who I can always count on and vice versa. But I also have ex-friends who's contracts I've cancelled when they've let me down.

Having people around who don't really care is just a drain and a distraction ...

... you put it perfectly.

 

[Montysoptician]

I'm putting this out there 1) because it's anonymous and 2) I can't afford a counsellor.

I'm an unpaid carer for my wife who has MS. I work full time (from home) and we have 3 kids. We have a paid carer for 14 hours a week.

It all seems to be getting much harder. She's not getting any better and doesn't do well in the heat. At the moment her mobility is bad and she has started getting tremors/shakes meaning eating/drinking independently, specifically, is becoming much harder.

Even though I'm meant to be working I still need to help her to bathroom and back. The carer is more food prep and house stuff. After work I have to sort tea and then all kids after school stuff which is 3 out of the 5 midweek days and weekends.

Recently, mainly because I've not been feeling 100%, I've really started to resent her being ill like it's her fault. If I've just sat down but then she needs something I'll huff and puff which assumingly doesn't make either of us feel very good. I barely go out as I need to be at home. I've been out on the drink once this year. I don't talk to my friends as they won't particularly understand.

What topped things off this weekend was on Saturday night when I saw my best mates out on a stag do to which I wasn't invited. Been a big group since early 90s going through drinking, engagements, weddings, kids, funerals. That one hurt.

Anyone else caring for someone? It's quite nice getting this all off my chest.

Drum, just by writing your feelings down in this post you will have alleviated some of the pressure on you that you are experiencing as your wife's carer.

I won’t pretend to have knowledge in this particular field, but I do have knowledge of post incident care and managing staff who have been involved in serious incidents.

It’s always difficult to see a resolution when you are so close to the actual issue, but you do need the occasional break which respite care can provide, so start by trying to arrange that through Social Services.

I would also speak to your GP and tell him that you are suffering from stress and ask for NHS counselling. Failing that, speak to your employer and ask to be referred to Occupational Health because the stress you are under is preventing you from providing regular and effective service. If you do get a referral they will normally arrange counselling.

I hope all goes well for you and your wife.

Take care

 

[Smug in Boots]

Drum, just by writing your feelings down in this post you will have alleviated some of the pressure on you that you are experiencing as your wife's carer.

I won’t pretend to have knowledge in this particular field, but I do have knowledge of post incident care and managing staff who have been involved in serious incidents.

It’s always difficult to see a resolution when you are so close to the actual issue, but you do need the occasional break which respite care can provide, so start by trying to arrange that through Social Services.

I would also speak to your GP and tell him that you are suffering from stress and ask for NHS counselling. Failing that, speak to your employer and ask to be referred to Occupational Health because the stress you are under is preventing you from providing regular and effective service. If you do get a referral they will normally arrange counselling.

I hope all goes well for you and your wife.

Take care

Good post and, as I think you're subliminally suggesting, Drum and anyone else, shouldn't hesitate to post on here.

The vast majority of posters are decent caring people who don't judge or hurt anyone because they're different or experiencing something they haven't.

Sometimes, as you say, that first little step can get the journey started.

 

[samwise_new]

by the way chaps, i am not putting down any carers out there with my reference to recent respite, his first home were absolutely superb and they were forced to close depsite a sterling effort from people trying to raise funds for them (quite a few of the better private owned ones went the same way)...most are now ran on a miniscule budget, the staff are paid as little as possible, those working from house to house quite often get more visitations to do per day and lose much of the travel allowance plus many have a set time to try to help and end up limited in what they can offer while there.

the care has been taken out of the community in many ways, always remember there are many voices out there to give advice and speak up for you, also remember that the doctors, hospitals and such have to have 'reasonable adjustments' in place.

my partner and her brother do a lot in those circles, i am happy to accept any messages for a chat or to see if they can help out.

 

[gelders pie]

Sharing with my sister ( and carers) the care for mam for a few years is comparatively not near what you are doing , but it did show me that people who do non stop caring on their own have my full admiration and respect.
I agree with the other posts here that you must reach out and ask, there’s no shame or embarrassment in that. In addition , I just say that you must take that care of yourself , otherwise you can’t take care of anybody else. I send my healing thoughts and prayers to you both and hope that helps aid your strength.

 

[Essayyeffcee]

@SAFCDRUM even though you may feel alone at times, hopefully this thread shows you that you're not. Others have an idea of what you are going through and this place can be good at times just to post your thoughts and get them out there

 

[SAFCDRUM]

I went through something similar with my mam before she died. She had Alzheimer's and I was caring for her in between working shifts - even at work I was phoning her to make sure she took her tablets whilst I was on the phone. I did arrange for someone to go in during the day to make sure she ate something and was washed but that was a waste of time. I even had arguments with my wife when she arranged for us to go away at times just so I had a break from everything.

Looking back, I was mentally and physically exhausted but I didn't acknowledge it at the time and on the day my mam died, I had a bit of a go at her saying that I couldn't do it anymore - 12 hours later she gave in, something I will always blame myself for.

Being a carer is the hardest thing anyone can do, especially if its a loved one. Watching someone you love fail like that is soul destroying and you do your utmost to try and keep them as the person you know and love.

After my mam died, I found myself going around and around in my head and not finding a way out until I spoke to a professional. After that it seemed that I found a way out and thinking straight again. If you ever need to talk my maiobox is always open

Thanks for sharing mate. Only last week I was shouting at my Mrs saying I can't cope etc. In reality I was a bit under the weather. Its easily done.

 

[SAFCDRUM]

i can kind of offer both sides.

my partner is a full time carer for her brother (had to give work up, she was not much better off for it) although i help where i can (brother has no control over his body and is chair bound, needs feeding, watering etc etc), i suffered chronic depression for many years then had my heart attack...it annoys the holy feck out of me having to watch her do so much, mainly i am annoyed at myself as i feel i should be doing so much more but my body and mind does not let me, we cannot make any plans for holidays to be 'ourselves' unless quite a bit of planning gets done before hand.

while she takes it on board i regulary sit and wonder why we can not just do as others do, just get in the car and go to the beach or visit a town somewhere, just book a couple of nights somewhere and yes, that resentment will raise it's head quite often because he will refuse to go into a home for respite even for a week so we can get a decent break, i am not sure if he even understands how much is done to accomodate him, a couple of decent breaks a year would be enormous...then i look at the lad and realise it is not something he goes out of his way to cause, he has not had great care since his original respite home closed down.

after my heart attack and that realisation that it can all end so sudden i have tried to get myself pulled round, do more and get out more but as ever there are a few circumstances that stop me...i have pretty much reached the conclusion that it is not his fault, her fault or my fault, life could be so much different in many ways so i try to take enjoyment where i can.

don't know if this helps but i cannot lay out some glowing report, it is what it is and we have to adjust and enjoy it where we can because it can be so much worse, while we all think we want it so much better it rarely is, you certainly are not alone in what you do or with your feelings marra, you are doing an excellent job and i can understand exaclty where you are coming from.

Thank you for sharing. You've had it tough personally as well. I know through the in laws (her mum is clinging on to life) that getting care is not that easy. I hope you can look into getting some 24 hour care for your brother in law so you guys can get away even just for a night.

 

[SAFCDRUM]

Here's some advice mate.

Talk to your mates, your family, her family, the neighbours, local authorities, Church, your MP and anyone else who should be interested and concerned. If they're not 'particularly understanding' tell them you're disappointed and f**k them off out of your mind.

Concentrate on who's left and ask how they can help, in whichever way, and take their help. When that happens see if you can get away for the day even if it's walking round your town, going to look at the school you went to or just having a pub crawl round your old haunts.

People should help each other otherwise it's all a waste of time ...

... if all else fails meet up before the next match and have a drink on me, I've had loads of help from loads of great people and don't feel the least bit embarrassed because I'll always help people when I can.

As my son always says, 'Nobody ever said life is fair'.

Sometimes it's definitely not but it doesn't mean it's your fault.

We rely a lot on my mam and stepdad who also live down here but are both in their 70s. They are 'young' grandparents but we try to bother them as little as we can. Rest of my family are in the NE.

 

[SAFCDRUM]

Sounds like you’re getting burn out and need need some respite. My wife has a chronic illness but nowhere near at your level and our kids are all but grown up so I can only imagine. But sticking in there and doing the graft you are makes you a truly special husband and dad. Not everyone would or could do what you are doing. You’ve probably already seen this but link below is to a carer support group that may be able to help you.
https://sunderlandcarers.co.uk/
Best of luck marra, it’s not easy reaching out and a real show of strength to do it.

Thank you. I live in South Manchester but will look into it. I was in touch with a carers dept pre covid and got like an annual £100 or so for like a family day out but it stopped as they had no funds when covid hit.