New Young(ish) carer looking to share and find support

Hi all,
My name is Lucille (29) and as of July 2024 I’ve become primary care giver for my mother following a severe stroke and heart attack. I’m an only child from a single parent household with the rest of our family residing in Italy, meaning I’ve had to tackle the repercussions almost entirely alone.

My mother is temporarily living in a care home however we are looking to bring her home once the property has been adapted to her needs. Following her stroke, she has paralysis on the right side of her body and extremely limited verbal communication.

I’ve since put my life on hold and moved out of London back to Devon in order to best support her. I feel as though I have been on auto pilot for the past 10 months and I feel incredibly burnt out.

I thought it might be beneficial to reach out across these communities in attempt to feel less alone and hear from others who have experienced similar family hardship. Also if anyone can signpost to any support groups, I think I may be ready to share and process my story.

Thank you for taking the time to read
x

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Hello Lucille,

Welcome to the community and for sharing your story with us. Having read your introductory post I am pleased to note you seem to be doing very well as a single primary carer for your Mum.

The post comes across as mature and relaxed, meaning I don’t detect any level of stress or distress or any of the negative connotations that might be associated with this kind of situation. I note also we are ten months plus into the journey and everything seems to be under control. I therefore wish to congratulate you on what you have achieved which is quite a lot :clap: :clap:

There are a few members of this forum who have experienced similar to you and your Mum and some who may have experienced worse and so there is likely to be plenty of help available.

I expect you are a tech savvy person and don’t need me to tell you how to search for posts on this forum. You can search my subject, by member ID (eg ManjB, lucillemersio etc) and all sorts of information will be made available to you. These will be personal experiences of those who posted the articles, but the main website also has much useful information.

Any specific questions you might have can be posted here and very soon someone will come along and respond, almost always with some very good relevant and personal experience based response.

Personally, I consider myself and my family (co-carers) as very much living through this hardship and we have been through a lot to be where we are today (still living in hardship, it doesn’t necessarily get easier - you learn and you adapt). I am happy to try to respond to specifics but as general advice, I can offer you no more than what I have already written about on this forum. Also, as noted earlier, your 10 months on autopilot has brought you to a place which took me and my family years to to get to, so you seem to be way ahead of us :slight_smile:

There are carer support groups, stroke support groups etc.etc. and I expect others may point you in the direction. I only use this forum and this community as my go-to for any help and support I need. I have not found anything better :slight_smile:

Wishing you and your Mum all the best down on Sunny Devon :slight_smile:

Namaste|
:pray:

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Hi @lucillemerisio welcome to the community. I’m sorry to hear about your mum, that must be so hard for you :people_hugging:

You will certainly find lots of support on here from fellow stroke survivors and carers so ask away or just to chat in general if you wish. I’ve put some links below, which you might find useful, to the Stroke Association’s helpline as well as for finding your local support group and such. The can do one to one phone calls pairing you up as best they can with others, if you wish to talk. They can help in so many other ways too, and I’m sure @Anna_Moderator will be along shortly to provide more information on that score :slightly_smiling_face:

Stroke Support Helpline:0303 3033 100
Support groups in your area | Stroke Association

DPT NHS Devon Partnership Support for carers | DPT

Devon Carers - Carer Services Near Me | Carers Trust Local Carer Centres - Carers Trust

You can also check out the Community Support Groups - Devon Carers

And there is also https://differentstrokes.co.uk/stroke-information/stroke-in-young-people/

Lorraine

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Hello @ManjiB
Thank you for taking the time to reply and for your message. It was interesting to read as although the tone may appear relaxed these 10 months have been the most stressful and depressing I’ve ever experienced.

I’d say im actually in quite a dark place which is why I wanted to share my story and reach out. I don’t have anyone else to rely on for my mums care therefore I’ve not been able to take any time for myself or temporarily shift responsibility, which ways super heavy on my shoulders.

I need to move back to London to complete my studies in September so that will be another thing to adjust to for us both, I wish my situation was as settled as it came across but unfortunately we are far from.

I appreciate your noting of these things came from a good place but may be misplaced, the hardship and trauma of loosing a parental figure and becoming a care giver are very much prevalent in my life at the moment - But still helpful to get things off my chest
Thank you for taking the time x

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@lucillemerisio hi & welcome to the community. Sorry you have had cause to join us but hopefully you’ll find lots of useful advice on here.

It os tough caring for someone & wven harder when you have to go it alone. Stroke is life changing for all around the stroke survivor too. You should be very proud of yourself as you are doing something not everyone can do.

In addition to the info provided above by @ManjiB & @EmeraldEyes yo might wantto reach out to your GP as they often have support for carers. .

Different Strokes also have a facebook group that you could join. It is specifically for younger stroke survivors & their families.

Please ask any questions you may have. There is usually someone who can help.

Wishing you all the best.

Ann

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:slight_smile:

Hello Lucille - OK. Thank you for the response and I appreciate you have been a terrible time over the last 10 months or so and you have been putting on a brave front and getting on with it to get things done. So well done on that - it is incredibly amazing what you have done on your own :slight_smile:

Before we go any further, now that you have reached out, please take some time to take in a few deep breaths, sit back and be nice to yourself. Do something nice just for you - you deserve it and I am sure your Mum would want you to do the same. That is your first task :slight_smile:

Let’s see what else can be done to bring you out of your dark place.

Your Mum is in a care home right now and so hopefully she is being well looked after. How is her condition? Is she able to communicate well? Is she mobile?

With her being in a care home, there is a good opportunity for you to recharge your batteries. Take some time out, knowing Mum is being well looked after. Like I said, just do whatever you need to to treat yourself and maybe get things done that have taken the back burner over the last 10 months.

Maybe you can go back to Italy for a week to spend time with your family - discuss possibilities to get help to care for Mum?

Are you in touch with Social Services?
You should register yourself as a carer (with your GP) if you have not already done so.
Also as sole carer you might be able to get some respite relief from social services. This will help you get some “me” time. Also it would give Mum someone else she can interact with.
For Mum maybe you can join some clubs - Lorriane @EmeraldEyes has sent you some links to carers etc in Devon and you will likely find other support groups on social media etc. (Ann @Mrs5K mentioned Different Strokes and Facebook).

Big Question:
Has Mum’s Care needs been assessed and has a care plan been devised? How is she going to be cared for once the home has been adapted?
Clearly some thinking has taken place whereby home adaptation needs have been identified and are taking place.

How is Mum going to be cared for?
Has your situation and your role as carer been considered - if you are going to complete your studies in September, who will look after Mum?

How does Mum feel about all this?
How aware is she?
How is SHE coping with being a stroke survivor?

There is no rush (I believe) for anything right now. But what I think is not necessarily what you or others might think.

You have already sacrificed a lot and may have to sacrifice more. Is this something you can do or is there a need to find other ways to support you and your Mum?

You’ve started the ball rolling and there is much help out there and solutions can be found.

Perhaps, you should take some time out, think about exactly what you want to happen next.
Sit with your Mum and discuss the situation and find out what Mum would like the next steps to be.
Put it all together and see if/how this can be achieved.

Hopefully, you are now starting to feel better. There is light at the end of the tunnel and there is definitely life after stroke as has been proven by many on this forum and this wonderful community of stroke survivors and carers and health professionals.

Please do not hesitate to come back (after you’ve taken that well deserved rest and treated yourself).:slight_smile:

:pray:

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Hi @lucillemerisio

Welcome to the community, I’m sorry to hear about your mother’s stroke. I hope you’ll find the Online Community helpful during this difficult time.

I can see you’ve been given some great resources by some of our members and that @EmeraldEyes mentioned some of our services. You might find our volunteer calls helpful, we can pair you with another carer who you can have weekly calls with, it may help to talk things through with someone else going through similar. I would also suggest giving our helpline a call, which @EmeraldEyes has given the details for. They can help with practical advise should you need it for your next steps when your mother comes home.

If you need anything whilst you’re using the Online Community, please don’t hesitate to tag me using the @ symbol and my username.

Anna

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