The carer's thread

[microdave]

I thought it might be an idea to start a thread about being a carer for others. A place where posters can tell their story of being a carer(if they so wish), offer advice or encouragement or a place to vent if you feel things are getting too much.

I became my mum's primary carer almost three years ago after she had a stroke. Her mobility on her right side is limited and she uses a zimmer to get around the house. She has a wheelchair for outside use but she found it gruelling getting ready (even with my help) to get out of the house so she declared herself housebound in mid October last year and hasn't been outside since. She doesn't need a great deal of help really. It's getting dressed, sorting out medication, emptying the commode, getting her paper, making sure everything is in the right place before I head to work, clearing up any mess when I finish work, making dinner, more medication to sort out, helping her get ready for bed and finally helping her get into bed at the end of the day. Having typed that out, it might be a lot of help, I don't know. And this is every day obviously. 

I registered as a carer with the council earlier this year but I've not heard from them about getting an assessment done to see if they can send some professional carers in order to take some pressure off me. 

I've got three brothers but two live on the east of Scotland and the local one travels a lot for work so they're limited in what they can do. I quite often feel that my life is slipping away (I'm 48 btw) as if I want to do anything I have to make sure my mum's needs are catered for first. When I do something like going to the football, I have to head home shortly after full time instead of staying in the pub for a bit. Even another hour would do but she's fixated on a routine that stays exactly the same every day so dinner is made at 6pm no matter what. This has changed a few times but it's fingers on one hand numbers. This is going to sound awful but I quite often wish she would die so I can get some freedom in my life but I feel like it's no longer a mother/son relationship. 

Apologies for the ramble. I'd love to hear other people's experience of caring for others.

[welshbairn]

9 minutes ago, microdave said:

I registered as a carer with the council earlier this year but I've not heard from them about getting an assessment done to see if they can send some professional carers in order to take some pressure off me. 

I'd talk to her doctor and maybe your local district nurses about getting some help and respite, even just the odd couple of hours for going to the pub or getting her washed and dressed in the morning. I couldn't have coped without my sisters regularly coming up to give me a break. If you could afford it it might be an idea finding a cleaner to help in the house for say a 3 hour shift a week, and if they get on with your Mum they could make her tea after the football and let you stay in the pub for a bit. Good idea for a thread by the way, I'm sure there will be carers of all ages on here. 

[Venti]

1 hour ago, microdave said:

I thought it might be an idea to start a thread about being a carer for others. A place where posters can tell their story of being a carer(if they so wish), offer advice or encouragement or a place to vent if you feel things are getting too much.

I became my mum's primary carer almost three years ago after she had a stroke. Her mobility on her right side is limited and she uses a zimmer to get around the house. She has a wheelchair for outside use but she found it gruelling getting ready (even with my help) to get out of the house so she declared herself housebound in mid October last year and hasn't been outside since. She doesn't need a great deal of help really. It's getting dressed, sorting out medication, emptying the commode, getting her paper, making sure everything is in the right place before I head to work, clearing up any mess when I finish work, making dinner, more medication to sort out, helping her get ready for bed and finally helping her get into bed at the end of the day. Having typed that out, it might be a lot of help, I don't know. And this is every day obviously. 

I registered as a carer with the council earlier this year but I've not heard from them about getting an assessment done to see if they can send some professional carers in order to take some pressure off me. 

I've got three brothers but two live on the east of Scotland and the local one travels a lot for work so they're limited in what they can do. I quite often feel that my life is slipping away (I'm 48 btw) as if I want to do anything I have to make sure my mum's needs are catered for first. When I do something like going to the football, I have to head home shortly after full time instead of staying in the pub for a bit. Even another hour would do but she's fixated on a routine that stays exactly the same every day so dinner is made at 6pm no matter what. This has changed a few times but it's fingers on one hand numbers. This is going to sound awful but I quite often wish she would die so I can get some freedom in my life but I feel like it's no longer a mother/son relationship. 

Apologies for the ramble. I'd love to hear other people's experience of caring for others.

Might be a good idea to jump into the depression thread. Plenty of folk on there that have some advice/empathy.

[microdave]

2 hours ago, welshbairn said:

I'd talk to her doctor and maybe your local district nurses about getting some help and respite, even just the odd couple of hours for going to the pub or getting her washed and dressed in the morning. I couldn't have coped without my sisters regularly coming up to give me a break. If you could afford it it might be an idea finding a cleaner to help in the house for say a 3 hour shift a week, and if they get on with your Mum they could make her tea after the football and let you stay in the pub for a bit. Good idea for a thread by the way, I'm sure there will be carers of all ages on here. 

Cheers, I'll do that. Might be a while before I get an appointment but that's no big deal. 

1 hour ago, Venti said:

Might be a good idea to jump into the depression thread. Plenty of folk on there that have some advice/empathy.

I'm a regular reader of that thread but I didn't really want to post there as I don't have depression. I actually got the idea for this thread from a post I read there.

[Jacksgranda]

3 hours ago, microdave said:

I thought it might be an idea to start a thread about being a carer for others. A place where posters can tell their story of being a carer(if they so wish), offer advice or encouragement or a place to vent if you feel things are getting too much.

I became my mum's primary carer almost three years ago after she had a stroke. Her mobility on her right side is limited and she uses a zimmer to get around the house. She has a wheelchair for outside use but she found it gruelling getting ready (even with my help) to get out of the house so she declared herself housebound in mid October last year and hasn't been outside since. She doesn't need a great deal of help really. It's getting dressed, sorting out medication, emptying the commode, getting her paper, making sure everything is in the right place before I head to work, clearing up any mess when I finish work, making dinner, more medication to sort out, helping her get ready for bed and finally helping her get into bed at the end of the day. Having typed that out, it might be a lot of help, I don't know. And this is every day obviously. 

I registered as a carer with the council earlier this year but I've not heard from them about getting an assessment done to see if they can send some professional carers in order to take some pressure off me. 

I've got three brothers but two live on the east of Scotland and the local one travels a lot for work so they're limited in what they can do. I quite often feel that my life is slipping away (I'm 48 btw) as if I want to do anything I have to make sure my mum's needs are catered for first. When I do something like going to the football, I have to head home shortly after full time instead of staying in the pub for a bit. Even another hour would do but she's fixated on a routine that stays exactly the same every day so dinner is made at 6pm no matter what. This has changed a few times but it's fingers on one hand numbers. This is going to sound awful but I quite often wish she would die so I can get some freedom in my life but I feel like it's no longer a mother/son relationship. 

Apologies for the ramble. I'd love to hear other people's experience of caring for others.

You need a break, caring - especially that level of constant care - can wear you out.

I was (I suppose still am) a carer for our Down's Syndrome daughter, but she's quite high ability and mobile (although you couldn't leave her on her own), and goes to the local Day Centre 3 days a week, for 4 hours.

My wife and I were also carers for a lad on the autisim spectrum who also was Aspergers and had a learning difficulty, he could be hard work on occasion, but we got a break from those duties about every 6/8 weeks. He was with us for 18 years. (No break from looking after our daughter, but I'd think we'd find it odd if she wasn't here.)

 

[Venti]

17 minutes ago, microdave said:

Cheers, I'll do that. Might be a while before I get an appointment but that's no big deal. 

I'm a regular reader of that thread but I didn't really want to post there as I don't have depression. I actually got the idea for this thread from a post I read there.

I see you're a Son of the Rock.

DM me if want a pint or a blether. I'm just across the river.

[Richey Edwards]

I helped to look after my Papa towards the end of his life, as his mobility and orientation to time and place went downhill rapidly. That was my first experience of being a carer. At first I found it upsetting to see him like that, but soon realised that I was doing a good thing by helping to make his last days a bit easier.

That experience led to me working in care professionally. I used to work as a carer for people with dementia, and as a support worker for people with learning disabilities and reduced mobility. It was an absolute privilege to work with these people, but also sometimes very sad as well.

It's not the easiest job, it can be a very trying and challenging one, but it can also be very rewarding. If I made even one of those people's lives a bit easier and a bit better, then it has all be worth it. It is this career path that has led to be going to university to study mental health nursing.

To all of you unpaid carers out there, I salute you. There should be better support in place for unpaid carers, and it is shocking that there is not.

[accies1874]

It's been a part of my life for pretty much as long as I can remember. Not the primary carer, but I've grown up with me and my family having to make considerations in terms of holidays, restaurants and just general trips out. It doesn't bother me much anymore as there's no one I love more than my brother, but we've been reminded a few times in the past year just how precarious certain external supports can be and how difficult it is when they get taken away. 

[addicksion]

@microdave have you contacted Carers of West Dunbartonshire? https://carerswd.org/

They might be able to give you some advice.

I care for my Mum, but she gets 4 visits a day from WDC Carers, all arranged when she was discharged from hospital 4 years ago. Sounds like your Mum has fallen between 2 stools in that respect.

You're doing an amazing job but you also need some help and a bit of respite, all the best

 

[pawpar]

9 hours ago, microdave said:

I thought it might be an idea to start a thread about being a carer for others. A place where posters can tell their story of being a carer(if they so wish), offer advice or encouragement or a place to vent if you feel things are getting too much.

I became my mum's primary carer almost three years ago after she had a stroke. Her mobility on her right side is limited and she uses a zimmer to get around the house. She has a wheelchair for outside use but she found it gruelling getting ready (even with my help) to get out of the house so she declared herself housebound in mid October last year and hasn't been outside since. She doesn't need a great deal of help really. It's getting dressed, sorting out medication, emptying the commode, getting her paper, making sure everything is in the right place before I head to work, clearing up any mess when I finish work, making dinner, more medication to sort out, helping her get ready for bed and finally helping her get into bed at the end of the day. Having typed that out, it might be a lot of help, I don't know. And this is every day obviously. 

I registered as a carer with the council earlier this year but I've not heard from them about getting an assessment done to see if they can send some professional carers in order to take some pressure off me. 

I've got three brothers but two live on the east of Scotland and the local one travels a lot for work so they're limited in what they can do. I quite often feel that my life is slipping away (I'm 48 btw) as if I want to do anything I have to make sure my mum's needs are catered for first. When I do something like going to the football, I have to head home shortly after full time instead of staying in the pub for a bit. Even another hour would do but she's fixated on a routine that stays exactly the same every day so dinner is made at 6pm no matter what. This has changed a few times but it's fingers on one hand numbers. This is going to sound awful but I quite often wish she would die so I can get some freedom in my life but I feel like it's no longer a mother/son relationship. 

Apologies for the ramble. I'd love to hear other people's experience of caring for others.

Posted something similar on the depression thread at the weekend. Wouldn't wish any hurt on my mum though although it is infuriating when both my brothers can go out at the weekend then gloat about it by posting on facebook. Just like you I can only go to the football as long as I leave at the end of the game. Leave house at 2.30pm and back by 5 (live only a couple of streets away from East End Park). Whereas before hand I would be going into the city centre to get drunk and finish it up with a chippy. As far as my circumstances are concerned it's not too bad between about 10am to 7.30pm as my mum has 4 carers that come to visit to help with her dressing, getting washed, going to the toilet etc. The nights are the worst though because you are on your own. I do have a lot of help from fife council who visit regularly. This all started because my mum was diagnosed with dementia. She has had these 4 carers daily since she left hospital in July last year. Looks to me you should get in touch with west dunbartonshire carers - https://carerswd.org/ .  Hope they can help. I ended up going to a therapist and he is a great help if only for venting when I go every 2 weeks. Just remember what you are doing is great, this time last year I didn't think I  could have done this for more than a couple of weeks. Yes it is bloody hard but you will get there. 

[microdave]

10 hours ago, addicksion said:

@microdave have you contacted Carers of West Dunbartonshire? https://carerswd.org/

They might be able to give you some advice.

I care for my Mum, but she gets 4 visits a day from WDC Carers, all arranged when she was discharged from hospital 4 years ago. Sounds like your Mum has fallen between 2 stools in that respect.

You're doing an amazing job but you also need some help and a bit of respite, all the best

 

Aye, I registered with them back in February. I hadn't realised it was that long ago until I checked my call history last night. They said it might take a couple of months to get back to me and I've not heard anything since then. But I'm off work on Friday so I'll give them a call. 

[s_dog]

Good luck with it, and with getting help from carerswd.org, especially now post covid when social care is under so much pressure due to lack of and turnover of staff.

I've been involved with caring for family members in the past and combined with work it can be very difficult, so definitely recommend chasing up some help, whether its respite or so carers for your Mum (if she's happy with that). It often seems to fall the the one family member to do it, and it can be the relentless nature that is difficult, even if it comes from love and good intentions. 

[Brother Blades]

Genuinely, hats off to everyone on this thread. Truly heartwarming that the unfortunate loved ones are being cared for by their nearest & dearest, primary carers deserve so much more support than is currently available. 

I remember reading @welshbairnoccasional post about caring for his parent a few years back & being full of admiration for the job he was doing. 

I’m really not sure how I’d be if my mum needed that care in the future, it’s quite a frightening thought but I’d like to think I would do my best, just not sure if my best would be good enough. 

[stimpy]

On 04/07/2023 at 16:07, microdave said:

I thought it might be an idea to start a thread about being a carer for others. A place where posters can tell their story of being a carer(if they so wish), offer advice or encouragement or a place to vent if you feel things are getting too much.

I became my mum's primary carer almost three years ago after she had a stroke. Her mobility on her right side is limited and she uses a zimmer to get around the house. She has a wheelchair for outside use but she found it gruelling getting ready (even with my help) to get out of the house so she declared herself housebound in mid October last year and hasn't been outside since. She doesn't need a great deal of help really. It's getting dressed, sorting out medication, emptying the commode, getting her paper, making sure everything is in the right place before I head to work, clearing up any mess when I finish work, making dinner, more medication to sort out, helping her get ready for bed and finally helping her get into bed at the end of the day. Having typed that out, it might be a lot of help, I don't know. And this is every day obviously. 

I registered as a carer with the council earlier this year but I've not heard from them about getting an assessment done to see if they can send some professional carers in order to take some pressure off me. 

I've got three brothers but two live on the east of Scotland and the local one travels a lot for work so they're limited in what they can do. I quite often feel that my life is slipping away (I'm 48 btw) as if I want to do anything I have to make sure my mum's needs are catered for first. When I do something like going to the football, I have to head home shortly after full time instead of staying in the pub for a bit. Even another hour would do but she's fixated on a routine that stays exactly the same every day so dinner is made at 6pm no matter what. This has changed a few times but it's fingers on one hand numbers. This is going to sound awful but I quite often wish she would die so I can get some freedom in my life but I feel like it's no longer a mother/son relationship. 

Apologies for the ramble. I'd love to hear other people's experience of caring for others.

I have a child with additional needs and I work in the social care sector. In my experience social workers are always mental busy so to get headway there don't wait for the council. Phone them and ask for updates, ask if a social worker has been assigned to your mum etc. Just try not to get lost in the system. You could always Google your local social work office and phone them and ask if anyone has been assigned the case. 

Also a doctor can refer to OT if not already in place and once you get one professional involved you can ask them what help is available and they can sometimes refer you on to other services and so on. Some local authorities are better than others I'm afraid when it comes to social care. 

[Nutz_the_Squirrel]

Consider complaining to your local authority citing section 12A of Social Work (Scotland) Act 1968. This places a duty to assess community care needs. Sounds like your mum would get a relatively ok self-directed support budget to use on whatever was needed e.g. care at home service. Push hard and use advocacy, local counsellor office, MP enquiries or complaints procedure if you need to. 

Carer support groups are a good idea as mentioned above.

Good luck