Hi everyone. I’m really not sure whether it’s appropriate to refer to myself as a carer but, having tried looking for support, this seemed to be the best place to turn.
I have no idea where to start and I’m sorry if this is a long post. I’m 23 and my parents divorced when I was very young. My dad hasn’t been a part of my life for the last few years and has 2 other children. I am my mum’s only child and, apart from the three years when I was away at university, it has been me and her living on our own for the last 21 years. I currently work full time at a school and have a long-distance relationship of about 5 years.
My mum has a multitude of both physical and mental health issues (severe chronic depression, anxiety, CFS, fibromyalgia, reflux and bowel issues which make it almost impossible for her to eat) and this has been the case for much of my life, along with her being unable to work as a result. I remember being about 10 when she first told me about her depression just by saying “Mummy gets sad sometimes”. As I got older and her CFS got worse, she started to spend more time on the living room sofa. For the last 5 years or so, she almost exclusively sleeps there, as going to bed leaves her in more pain than staying where she is. I am responsible for most of the grocery shopping and meal preparation too. She won’t eat properly if I’m not here (though when I’ve said this to her she’s become angry as she maintains that this isn’t true, but if I’ve been away I can see that the food I left for her is either still in the fridge or in the bin) as she doesn’t have the motivation to feed herself, both because of her depression but also because of the pain and discomfort digesting food gives her. She had an operation last year in an attempt to correct her reflux issues but it honestly just seems to have made things worse.
My mum has told me that I used to be her sole reason for living; basically if I hadn’t existed, she would have taken her own life a long time ago, and this is something that, as morbid as it is, I recognised and understood. We had both hoped that as I hit adulthood her health would have improved somewhat and she would have found other reasons to live besides me. However, the last couple of years have really dragged her under. Almost two years ago, my dad (who moved to another country with his family a few years back) decided that he needed my mum and I to sell the house we’ve lived in for the last 20 years so he could get his portion of the equity and, having exhausted all avenues, we’ve learnt that there’s nothing we can do about it. As a result of not being able to afford anything in our local area once all costs have been paid, we’ll have to move away from the local health authority and our family.
My mum is also under a Care Team for her mental health. Around the same time as all the house sh*t hit the fan, two people from her team, one of them a support worker who would get her out of the house each week, left. These were people who had a real positive impact on her and their leaving essentially left her bereaved. The reason I felt able to go away to uni (and possibly the reason she let me) was because I knew she would have their support while I was gone and, paradoxically, she believes she was at her most well mentally while I was away because of their help. Long story short, her Care Team collapsed after they left and the so-called ‘support’ she’s received since has been farcical; new people being useless, people coming in and out as they please, both of us begging them on multiple occasions to help her only for them to be off on leave the week after. This, plus the fact that my mum doesn’t trust our family to give her the support she needs, means that I’m the only person she has to rely on and as awful as it must sound it’s making me resentful.
In the last few months, things have started happening with the house and my mum has been even more exhausted than usual. March, however, was particularly bad. We had to have our pet dog put to sleep a few weeks ago and it was a far more traumatic experience than my mum had imagined it would be, having had pets put to sleep in the past. We’d had him for 12 years and my mum says he was her reason for getting herself up every day. With him gone, she feels empty. I took time off work to be with her afterwards as I honestly thought she wouldn’t be here when I came back if I had left her alone. Afterwards, her CFS became the worst it’s ever been. She’s always been prone to doing strange things when in a CFS brain fog, but she was literally falling asleep while standing up or in the middle of an activity and refusing to sit down when I told her to. All to keep herself from having time to think about our dog. I can’t imagine being inside her head but I just wanted to scream at her to stop.
I went on to Easter break soon afterwards and thought - hoped - she’d be ok. I’d had some relationship issues come to light and so had decided to go away with my boyfriend for the first week of the Easter break in order to sort them out and spend some time together (this had been organised at the beginning of March, before the stuff with our dog). I’ll usually go away to see him during half term breaks and prefer going to him so I can get away from home. The day before I left, she asked me not to go, but in her own way which involves dancing around the question instead of outright asking it. I said I needed to go for my own sake but would be in touch by text each day and she accepted this. Her ‘Care-Team’ were either on leave, sick, or training, so I made sure family knew I was going away and asked them to step up, to which they agreed they would, although given how they’ve let her down before I never put too much stock in what they agree to do. So, I went away, texted her each day even if it was just a short message and hoped this would be enough. Yesterday, the day before I came home, she sent me a message saying that she felt she was “out of sight, out of mind” to me and this week, for her, had been awful. She had seen family, but the impression I get is that it’s not what (or who) she wants.
Cut to today. I come home and within 20 minutes of me being in the door, she’s in tears, telling me that she’d spent much of the week crying. She’d had time to think about the move and essentially told me that if I decided to move in with my boyfriend at some point after she and I move away, and she and I didn’t live within a 20 minute drive of eachother for the rest of her life, she didn’t see a point in living (again, in her own way of saying it). She told me that this week has proved to her that she’s not my main priority and I will always put my self-preservation above her feelings. I was speechless. She’s told me that I lack compassion before but to not on this level. I know I didn’t respond the way she wanted me to because I kind of just shut down. A defence mechanism I suppose.
I’m upset and angry, but most of all, conflicted. She’s my mum and I love her and until recently I thought I’d have no idea what I’d do without her. But I can’t help feeling held down, burdened, and resentful. I feel selfish and, frankly, evil for feeling it, but I just want to run away from her despite knowing what I would likely come back to. I don’t think I ever would because I’m her only child and she has nobody else, but it doesn’t stop me from feeling it. Her sickness is all I’ve ever known and to me it’s normal. But her deterioration in condition both mentally and physically alongside the lack of support she has from other people is awful to observe and I’m at a loss for what to do. Because, honestly, I want to run away from it all too.
I’m just looking for people who understand, either because they’ve been in a similar position as an only child with an ailing parent or they can imagine what it would be like. The guilt I feel over her is so destructive. I’m hoping to get a chat going. Thanks in advance.