Home life as a carer/ OCD

Sunflower123 · May 9

Hi,
I'm 21 and live at home with my family, including my Grandpa. I have been a carer for the past three years in a nursing home but unfortunately my anxiety and OCD, which I have had for many years, has since worsened and I had to quit. One week after that, my Grandpa became very ill and his health could go either way, he may get better (but not to the extent he was before) or he may decline and require end of life care which he wishes comes from us at home. He currently is bed bound and is likely going to be unable to walk again even if he improves. My family of 3 and I take it in turns caring for him and his personal needs as well as checking on him multiple times during the night. This is not the first time this has hapened. At the begining of the year his health worsened and we were told then he may not recover, however he did (to a certain extent) i found it near imposible for those two months to cope and now it is happening again. Being around any sort of contaminate or anyone who is unwell brings me a huge amount of anxiety and I have recently been diagnosed with a phobia of becoming ill. On top of this I am working part time with a family member and looking for a new job, which it turns out is not easy! It is exhausting fitting this all in. My family are all exhausted and unfortunately everything has come at once, as it does, so we are all dealing with rather a lot. I worry about all of our health. The trouble is there is a lot of uncertainty. My Grandpa could be like this for days, weeks, years. We just don't know. And I know myself I can't cope with it for much longer. And I can see the rest of my family aren't coping too well either. I have thought for a long time about moving out because I simply find is so uncomfortable and exhausting living with people when almost everything they do can make me feel so anxious and overwhelmed. I don't really want to see anyone anymore for fear of getting ill. Now I feel like I need to leave but can't because my Grandpa needs help and if it is coming to the end he needs to know he is loved and cared for and he needs the company. I am getting medical help, but as I am sure a lot of you know, it is a long process, and I just don't have the time to wait. I would appreciate any advice from people who have had similar experiences on how they managed to cope. Caring for anyone, long term or short term is a big ask and very demanding.
Look forward to hearing from anyone.

River · May 9

Hey @Sunflower123

Firstly a warm welcome to the mix and thank you for being brave enough to open up to us

I’m hearing how you’ve had to stop being a carer because of your struggles with anxiety and OCD and that sounds extremely hard to cope with more so now that it’s effected you day to day.

I’m sorry that your Grandpa is poorly and Im wishing him a speedy recovery

I can hear just how tiring and draining everything is for you and I’m wondering if your ever able to take some time to yourself to just focus on you

Again thank you for sharing with us and we are hear and listening to you

Sunflower123 · May 9

@Rose 113
Thankyou. Yes I do have a little time to myself but honestly feel like I should be helping when I stop and slow down. I am trying to find a little balance. I'm too tired to do a lot of the things I normally enjoy like baking or art but I like movies qnd they are a good escape and don't use any energy.

DonnerKebab · May 11

Sunflower, you're a great person for looking after you're grandpa. Truly. And the anxiety, and fear of illness is just awful to hear about. You don't deserve to go through that. I'm not sure if it's the same thing or not, but I had a severe fear of germs, and the carer stuff, I've been doing it for a long time, since i was 11 for an autistic sibling, so being in such a place for so long, i can only advise you on what i wish i had done when i was where you are at. You need to take a break for yourself for at least a week or two here and there. I've been in that place, and when you keep going like this, either you end up going emotionally numb, or you end up unable to care for him and for yourself with burnout. The number one thing i never learnt was that i deserved the effort to take care of myself for once since i was busy taking care of everybody else. I want you to know that taking care of yourself, and making sure you're happy should be paramount to you. It's the kindest thing for you, and for others, because burnout is the alternative, and keep going beyond that and it's emotional numbness. Your granddad will know what you've done for him, he'll know that he's loved, but please, don't end up like me and ignore you're own wellbeing for too long. I'm not sure what hobbies you're into, but I ended up getting a Wii and playing Mario kart myself at the worst of the health anxiety, and gradually overcame it. The pandemic keeping people 2 meters apart helped me ironically. If i were you, I'd take a step back (you will feel guilty for the first few days perhaps), apply for therapy, and then take care of yourself. Short breaks here and there.... it doesn't give you enough time to relax properly. You need at least a week or two mate. I wish i could give you some more advice but that's all i can say really. i hope things get better for you friend.

Sunflower123 · May 12

@DonnerKebab
Thanks for the advice. You'r right, it is so important to take time for yourself. I love movies, they are always a great escape. And i really like cooking as well, although I haven't been feeling up to it quite as much lately. I actually really enjoy cooking for my family and it is a nice escape for me. A win, win.
It sounds like you have, and still are having a really hard time
I hope you know how much good you have done, caring for your sibling. I imagine it was really hard especially when you were so young yourself. I got on quite well in the pandemic as well. The Masks were amazing, nobody could cough or splutter and spread illness.
My Grandpa has declined a lot more and I don't see him having long left, he is actually really content and doesn't seem un any pain at the moment which makes me happy. I am chaneling all my energy into making sure his last days are happy, spending lots of time telling him about all my memories of him and my late grandma, but afterwards, as dark as it seems talking about his death, I intend to take a bit of time to myself to slow down.
Like you said, I don't want to burn out again.
I hope you are recovering yourself from burnout. It can be so debilitating. I believe it's good to remember that although the burnout is awful, you have done so much good. It's sort of like when you get calluses from hard work. It's proof of how much you put into to doing something so kind and thoughtful. Although we both may have put a bit too much into doing the right thing. Since it's a bit late to fix it now I like to at least try and remember that although we need to manage it in a much more realistic way it is a really good quality to have. Just in moderation! I'm trying to be a bit more positive in my outlook of myself.can you tell?🤣
I wish you all the best and thankyou for the advice. I really appreciate it. I hope you can manage better yourself as well.

DonnerKebab · May 13

@Sunflower123 I'm very sorry to hear about you're grandpa, i'm wishing you and him the best. And, i get the hardwork analogy, but, at a certain point, when you get burnout month after month for years, you go emotionally numb, which is what I'm trying to caution you about. I'm not going to go into to much detail, but i've had a very brutal time, and have spent my entire life as a carer for my brother, handling his violent meltdowns and a few other things, and doing it for so long, virtually 24/7, with no me time for years on end, you'll naturally start to feel emotionally numb. To much, for too long, you'll stop feeling happiness or at least somewhat good to an extent knowing you've helped out a lot, and you'll stop feeling the effect of burnout. When I say don't end up like me, the emotional numbing is what I mean, from too much burnout, for too long. I'm heading to therapy soon to sort it, and it'll be a very tricky one, cause it's been the case for me for about 5 years at this point, and I'm just trying to caution you, don't overdo care and neglect yourself, and try and work with a therapist to get out of the health anxiety situation, and give yourself weeks. You think a little while here and there are suffice, but in the long run, they're not. You need several week breaks every now and then from being a carer in the long run. Sorry if this seems a bit blunt but i just want you to take care of yourself and avoid emotional numbing like i got, cause it's hard to get rid of. But yeah, spend time with him for however long he has left, and then take a break for yourself okay. Again, i'm wishing you and you're grandpa all the best.

shannon_164 · May 14

hey @Sunflower123 🙂

thank you so much for sharing all of that. What you’re carrying right now is incredibly heavy and i want to start by saying how strong and selfless you’ve been, even when you’re at your breaking point. that strength deserves recognition, and so does your pain. you’re not alone in feeling completely overwhelmed by it all.

caring for a loved one, especially someone as close as your grandpa, is emotionally and physically exhausting in ways that are hard to explain to anyone who hasn’t been through it. add your own mental health challenges, the uncertainty of his condition, the pressure of looking for work, and the emotional weight of being surrounded by stress… it’s no wonder you feel like you’re at capacity.

please hear this: you’re not selfish for wanting space, or for needing to protect your own health. you can deeply love your grandpa and still feel suffocated or scared by the situation. those feelings can coexist, and they don’t make you a bad person, they make you human.

i’m really glad to hear you’re getting help, even if it’s slow. it matters that you’re trying. in the meantime, some things that might help (even just a little):

-small boundaries matter, if moving out isn’t an option yet, can you carve out small windows of time to decompress somewhere quiet, even if it’s just in your room or outside?

-try not to isolate, i know the fear of illness is overwhelming, but even short, low-risk interactions, like texting with a friend or facetiming someone, can help keep you connected to the world outside your anxiety.

-let people help you too, could you talk to your GP or care coordinator about respite care options, or even at-home support for your grandpa? you don’t have to shoulder this alone!

-remind yourself this is temporary. the uncertainty is brutal, but things will shift. this chapter won’t last forever, even if it feels endless now.

you are doing the very best you can under incredibly hard circumstances. that’s more than enough. it’s ok to admit you’re not coping, and it’s ok to ask for help, not just for your grandpa, but for you.

if you ever need to talk more, vent, or just not feel alone in this, we are all here. you’re doing something incredibly hard, and i hope you can give yourself some of the same compassion you give to others. you deserve that!

we’re all so proud of you

Sunflower123 · May 14

@Donner Kebab
Yeah. I am planning what I would like to do after this is over. It's something positive to look forward to and it distracts me from whats going on now. Since I'm jobless at the moment it will be a fresh start. I can find a new job that I can manage and I'm also trying to think what is important to me, how I want to live my life. I don't have much time to make healthy food for myself or exercise etc at the moment so I am trying to plan healthy meals that I will enjoy. I have bought myself some exercise equipment as well so when this all quietens down I'm going to take some time to focus on myself and getting myself well again. I'm also looking at the possibility of somewhere new to live. I've been struggling for years so I want a fresh, new start. I can start from scratch and create a routine that works for me now and will make me happy. I am also in the process of getting therapy. So I'm on the right track.
I hope you get to were you want to be soon and that the therapy you are getting helps.

Sian321 · May 15

Hi @Sunflower123 , thank you so much for making this post and for trusting us with your feelings.

I just wanted to add to what everyone has said here to say that it's so positive that you're opening up about what you're going through, and it sounds like you're currently in the middle of a really hard and overwhelming time. I could really hear just how confronting and triggering it feels to having to take on some of the caring duties for your Grandpa when you have a phobia yourself of becoming ill and worry deeply about those around you getting ill too. That sounds hugely emotionally demanding as well as being physically intensive too.

I hear your dilemma too of wanting to move out into your own space and to move into a new job role, but feeling like you can't leave your home right now while your Grandpa and family need you.

Day-to-day, I wonder whether there are any smaller boundaries that you might be able to set as you care for your Grandpa to support you with your anxiety? For example, to perhaps let your family know that you can provide caring help for a set amount of time each day / each week, but that you will need down-time and personal space around that? Or perhaps there are certain caring activities that feel really overwhelming compared to others, and maybe there could be a boundary set around those so that someone else could take those on? You deserve to be able to set limits wherever you need and your feelings are so valid here.

I can see you've mentioned you're on a waiting list for therapy which sounds so positive. In the meantime, are there any other sources of support you are looking for? I will share below some services that offer help around OCD specifically as well as being a carer:

Carers Trust runs a network of local carer organisations in England, Scotland and Wales. They offer information, advice, practical support and/or care in the home to unpaid carers of all ages. Many of these local carer organisations in their Network have dedicated services for young carers and young adult carers. You can find young carer services near you by going to https://carers.org/getting-support-if-you-are-a-young-carer-or-young-adult-carer/getting-support-if-you-are-a-young-carer-or-young-adult-carer

OCD Action is a national charity run by individuals with lived experience of OCD, offering help, information and support for people with OCD. They also have advocacy resources and a range of other information and factsheets on their website detailing some other ways that you can get support. You can call their helpline on 0845 390 6232, open from 9:30am - 8pm, Monday to Friday. You can also email them at support@ocdaction.org.uk Their website is http://www.ocdaction.org.uk/

OCD UK is a national charity run by and for people with OCD. They provide advice, information and support services for those affected by OCD. They have a range of support groups and forums where you can engage and connect with others who are affected by OCD. They have a support and advice line where you can talk to a volunteer Monday-Friday 9:30am-3:30pm on 03332 127 890 or you can email them via a form on their website at https://www.ocduk.org/ To become a member of the organisation there is a small fee and you have to be over the age of 16. If you are under 16, you will need the permission of a guardian. However, there is a range of support and information that you can access on their website for free.

DARE Panic and Anxiety Relief is an app designed for people coping with worry, anxiety, intrusive thoughts, insomnia, or panic attacks - helping you to regain confidence and live life at its fullest. While certain parts of the app require payment to be unlocked, there are hundreds of free features and the app itself is free to download. Some of the apps' free features include a bank of "SOS" step-by-step audioguides to help you calm down during a panic attack and to manage your intrusive thoughts, based on the evidence-based DARE technique by Barry McDonagh (BA, Dip Psych). The app also includes free breathing exercises, soothing meditations, and motivational 'pep talks' to help encourage and reassure you. It can be downloaded on the Apple App Store or the Google Play store.

We're here for you if ever you wish to share more: @Sunflower123 .

Home life as a carer/ OCD

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