I'm a depressed carer

Share information, support and advice on all aspects of caring.
Hello all

You may all be the only ones who understand.

I'm a 30 something nurse who cares for my parents and little sister and work full-time. I've had depression a few times in the last ten years but over the last year, it feels like madness. I've realised I cannot have the life I thought I could. I'm depressed because I would love nothing more than to get married and have children but this is impossible as I will have to care for at least one or all of my family full-time I think within the next 2 years or so.There are other family members but they cannot/will not help. My parents will not involve social work or get respite and I will not put any of my family in a home.

My mother in her late 60's has on and off depression, anxiety and occasionally panic attacks. She has asthma, severe acid reflux, and aches and pains. She wont take her asthma pumps because she thinks they make her fat, she refuses to attend counselling and cant bear to live with my dad most of the time as she finds him annoying, the tension in the house this causes is palpable and causes frequent arguments.

My dad is 69, and may be showing early signs of Dementia or it could be stress and getting older. Over the last couple of years, his memory has faltered, he becomes confused whilst driving and in general and has lost his sense of taste and smell. Recently he has started talking innapropiatley to strangers, mainly women, ( told a petrol station clerk he could marry her, struck up conversation with a schoolgirl at a bus stop, smiles at women all the time) I suspect it is because my mum cant bear his company for too long and doesn't show him much affection. Luckily he is strong enough to pick up my sister from her wheelchair, she weighs about 65 kilos, but for how much longer I don't know. I stick up for my dad a lot and mum gets upset by this, she thinks he lies and pretends to forget things but I try to make her see, he probably really does forget things and she cant get annoyed by everything he does.

My little sister is 34, wheelchair bound, incontinent and has learning disabilities but we are able to have a conversation. My mum does everything for her and I battle with my mum and sister to teach her independence, feed herself, push herself in the wheelchair, go out etc. I lose patience with her too easily and have tried like crazy to do fun things with her that she used to like, swimming, bowling, going to the shops but my mum has fed health anxieties into her about getting a cold from going out or hurting her back, so she just plays games on her mobile phone all day and watches tv. She must be suffering mentally too and constantly craves attention with the slightest issue.

Since my sister had a seizure of unknown cause a few years ago, we've all deteriorated in our mental health. I gave her mouth-to-mouth while my mum collapsed in the toilet from shock and my dad begged her to be strong while the paramedics worked on her on our living room floor. Since then, she has put on a lot of weight due to my mum giving her extra food and drink to boost vitamins and nutrients and restricting her activities. We have all been extra tense in general and my mum's physical and mental health has taken a significant decline.

After living on and off with them all my life, I had to move out last year for my sanity and to be able to best support them. I moved ten minutes away and bought a bike to be close and bought a bike to get to the, in an emergency. I visit them at least 2-3 times a week and if one of them is ill, 4-5 days. If I don't ask my mum how she is everyday I feel guilty and my mum never says she is fine. so after each time I ask, I always worry about her and then the future. If she's just recovered from a terrible flu, the next day she'll feel nauseous or have a headache or her feet or leg is hurting. As a nurse and daughter, I give the best advice and caring I can, but the last year, I've been having panic attacks and depression, when my mum has trouble breathing, I do what I can to help, but inside I'm having a panic attack and want to burst and then I'll cry after from the stress of it all. Sometimes my mum will tell me that she wishes I was there that night or another when she couldn't breathe in the night and I feel like crap that she was so scared and gets like that but I also feel a bit resentful that she doesn't realise what an emotional burden it has become, thinking about her and my family every moment and then of course I feel guilty that I feel resentful because I am her daughter and should be there for her, and I am but nobody knows how painful and heart wrenching it is.

When I go on holiday, they need to hear from me every couple of days or they get worried and they dont understand why I may not want to Whatsapp them every day. If I'm happy, I'm guilty that I cant be that happy with them, I'm sad that I cannot be their carers more willingly, and I don't want to be a resentful carer, not ever, ever. I love them, I do, I feel sad for them all, but I cant cope.

If any of the below happens, I will need to quit my job or go super part-time and move back in.
  • If my dad falls ill, there is no-one to lift up my sister for her toileting needs every 3 hours and at bedtimes. My parents wont use a hoist and my mum cant lift my sister.
    If my mum falls ill, I will need to look after her and/or look after my sister as my dad wouldn't be able to care for my sister alone.
    If my sister falls ill, I would need to be in hospital with her and support my parents.


The thing is, mentally I don't think I could cope with any of the above situations for too long, I'm sure the feelings of resentment, anger and frustration will show through and it cannot happen that they are made to feel bad.I feel guilty that I am not more patient with them, guilty that I am not over there more, guilty that I get angry at them, guilty that I resent them for not trying to help themselves more or listening to my advice, guilty for everything, but also angry and sad for them.

So, I'm on the waiting list for CBT for anxiety, will try and get counselling with my local carers org, but I figured you guys have been through similar emotions and dilemmas, so any advice is welcome,

Sorry about the length of this.

Thank you.
"I will not put any of my family in a home" says a lot about the complicated relationships in your family. As things stand, when your parents get too infirm YOU will be the one expected to take on your sister's care. That's not fair on you or your sister.
My son is 38, brain damaged at birth. Some of him operates at normal level, but his mental age is really around 3-4 years. He can't read, write, or do any maths. He's had brilliant teachers, I can't fault them. If anyone could have taught him to read, they would have managed it. My husband said it was like his brain had some "black holes". He can't write his surname but can look after and drive my 10 ton steam traction engine!
He moved into the boarding part of his school when he was 16, as I was very ill. Then he went to a farm college, a large residential home, a smaller satellite home, and now lives alone in a privately rented flat with carer support. It's not perfect, what is, but he has a wide range of friends, attends various day services during the week, and has carer support at weekends. Wouldn't that be better for your sister than sitting around all day with her two elderly parents and an electronic gadget?
My son isn't abandoned by us, he's very much loved, and knows it. He's home this week to take the steam engine to two shows, he comes away on holiday with me, spends Christmas and Easter here, but I know that whatever happens to me, he has "another life".
YOU have a choice. The only power they have over you is the power you let them have, and at the moment it sounds like they know exactly how to pull your strings.
Go on holiday and DO NOT keep messaging them. Just leave them behind mentally and enjoy yourself. They need to know that they have to manage without you sometimes.
They will probably never change, you need to accept that. But you can change, and your happiness is worth striving for. After all your years of caring, you DESERVE that.
I feel very sorry for your mum, but she is destroying your family, and any chance of happiness that any of you have.

If she were not there then your sister could move into assisted living ,and actually HAVE a life - instead of being 'forcefed sugar' and with nothing to do but her mobile phone games. Your father could have care-workers come in if he indeed is developing dementia.

And you - you could have a life. Get married. Have children.

ESCAPE.

But your mother is like a central vortex in your family, sucking in all the attention and energy, so that 'everything has to be about HER'....even though she 'appears' to be looking after your sister etc.

So, the question is, really, how to 'neutralise' her malign impact on your all (unintentional, I don't say she is destroying your family 'deliberately' - to be fair, it is her 'fear' that is destroying it- that irrational terror that is controlling her mind, and sucking you all into its endless bog of need and anxiety etc etc)

It is, I'm afraid, as BB says, a question of 'standing up to her'. Of just 'ignoring' her dysfunctional anxieties and behaviours, and her 'control' of you all (everyone circles around her - you in particular.)

In the first instance, why not visit your/your sister's GP and ask outright what the practical possibilities are for her moving into assisted living and gaining her own life with what degree of 'supported independence' might be available for her. That will tell you what COULD be done.

Does your sister have the mental capacity to have the legal ability to make decisions about herself, or are your parents her 'legal guardians'? If she does have mental capacity, then it will be up to her, not your mother, to decide if she does want to go into supported living. If she doesn't, then it is harder, though it could be that your father could 'over-ride' your mum (who will, it's pretty obvious from what you write, totally oppose it - not because she doesn't love your sister, but because she will be terrified for her)(she's terrified of everything as it is, isn't she?) Depends if your father's dementia is now making HIM lose the legal ability to make decisions about anyone, including himself.

The proble mwith anxiety as a mental illness is that it is a bottomless pit, a monster that lives inside your mother's head and can NEVER be 'satisfied' - there will ALWAYS be something for her to fear and dread and worry about.

How long can your dad continue living there? As his dementia worsens, he WILL need residential care. This is not about 'I will not put my family members into a home' but what is BEST for him. Not YOU (!) (or your guilt pangs!!!)(we ALL have them - we call it the Guilt Monster here). Remember, your dad moving into residential care is NOT 'putting him in a home' - it is about getting him AWAY from a highly dysfunctional wife, who clearly has a whole lot of covert and not-so -covert hostility to him, who isn't 'nice' to him at all anyway. Don't you actually think that a wel lchosen care home for him would be a RELEASE for him?

My MIL has been in three for her dementia and they have ALL been lovely (all that is 'wrong' with the current one is that her dementia is now very advanced, so she is in an 'advanced secure unit' ,and by definition they are not the world's 'happiest' places - but to the pool folk there, in their 'heading into end stage dementia' it really doesn't matter. The staff are lovely, and do their best, but by that time dementia has virtuall closed down their minds, and now my poor MIL just sits in a chair all day and sleeps - hardly recognises anyone, and is almost completely 'inert' - it's just that stage of dementia - she'd be like that wherever she was.)

But your dad could have a few more happy years in a really nice care home, away from his hostile wife, being made a fuss of by staff (and, by the way, don't forget, other female residents - for there is nearly always more women than men, and the men get 'courted and fussed over' by the women!)(which it sounds like your dad would like!). My MIL's first and second home were like 'hotels' - with meals laid on, entertainments every day, and a great feeling of 'conviviality', including outings and parties. Think how your dad would actually enjoy that!

I hate to say this, but while your mum's anxiety is 'allowed to run the show' (as it is now) you will go on in the 'hell' you are in now, trapped and helpless and frustrated and resentful.....and your sister and father will be trapped as well. It's not just YOU who need to escape this - they do too. And you are the only 'fit' one to make it happen.

Wishing you all the best - but it's hard to see how this situation can continue as is, with your mother 'spoiling' everything for you, your sister and your father. (Again, I stress she isn't doing it 'deliberately' - it is the nature of anxiety disorders to screw up the life of its victim, and all those who come near.....)
Hi Jane

I not going offer any advice (frankly be trite compared with previous contributors) but know we do understand, you are heard and am glad you have found us.

Cheers
F
Are Social Services aware of yor sister at all? When did she last have a needs assessment? Jenny's post about mental capacity made me wonder if your mum is effectively depriving her of her liberty? I really do think you should have a confidential discussion with SSD about the situation. I know it will cause all sorts of repurcussions but what can mum actually do to you? Absolutely nothing. Your mum needs you more than you need her, so you zre the one who should call the shots. You are not a child, but a strong woman with a responsible caree, and you will really just be helping your sister. Much better to leave home in a planned way rather than when a parent dies. That's the sad reality.
My friends son cannot speak or do anything at all for himself, he was an unexpected second twin. He lives in a small residential home, but is often out and about doing all sorts of things in the community, we bump into him all sorts of places. Wouldn't you like your sister to do more?
I found counselling really helpful when dealing with my mum. I suspect you are not really depressed, but completely and utterly fed up trapped in a situation you can't see a way to escape? We can help support you.
Just to say, I really DON'T mean to sound critical or hostile towards your mother - she's a victim here, too.

But HER life would be so much better if she didn't have a husband with dementia living with her, or a daughter with severe care needs.

I can see a scenario where your Dad is happy in his 'hotel' (!) being made a fuss over by the other female residents (!!), no longer 'got at' by your mum, and where your sister is thriving in a supported living environment, doing so much more than she is 'allowed' to do now by her anxious mum, and where you MUM is having a much nicer life too!

Remember, just because someone 'moves out' does NOT mean they can no longer visit. BB's son comes to visit regularly, and with my MIL with dementia, while she was still able to do it, she used to come to me for weekly 'sleepovers'.

So if your sister and father 'moved out', that still allows plenty of time for them to 'come home to stay' for a while, eg, at weekends, so you could all have 'family time together' with your mum.

As for your mum fearing that without her daughter to look after she would 'have not function', why, reassure her that within a few years she'll be having your children to fuss over!!!! :) :) I'm sure she'd make a doting granny:)

I paint this picture deliberately to show you that the future CAN be b etter than the present. BUT, it will take strength and determination and sticking to your guns on your part.

Right now, you run the risk of being the 'enabler' to your mother's 'unhelpful' behaviour (ie, behvariour that is not, sadly, actually doing your sister/father any good - though it 'costs' so much to your poor beleaguered mum, and to you!)....even worse, you run the risk of simply 'colluding' with her by helping her 'carry' the current cripplingly heavy situation.

Stepping back and taking on the role identified on this forum not as 'carer' but as CARE MANAGER - ie, you organise the care needed (including 'living out' for your sister/father), and become the person who sorts things out and improves the quality of life for ALL of you (you included, and also your mum).

I also point out that the 'I'm not putting my family into a home!' attitude can, you know, be predominantly fuelled by 'guilt'.

It works like this. Because moving someone out of the house would make your life easier, you feel you shouldn't do it, as you benefit from it (less hassle etc). But your 'better self' says, why should YOU, a healthy person, benefit when your sister/dad are not healthy? Moving them out is a gain for me, but a sacrifice for them. And so you feel guilty about it.

BUT, as I emphasise, moving them out is actually BETTER FOR THEM......THEY benefit too.

It really is a win win - and that is why kicking the Guilt Monster back into the nettles is so, so necessary.

And think about it - if your sister and dad moved out, well, if it doesn't work well, then they can always move back home, can't they? It can be helpful to realise that decisions are not irreversible, as a reversible decision is much, much easier to make psychologically!

Try it out - see if everyone isn't happier, and if they are not, then yes, move them back home. Nothing lost.