I have just joined the forum. I’m 43 and in a position where I’m at home with my elderly parents and the primary carer for my elderly mum who has Parkinson’s and Lewy body dementia. I have a great and very supportive partner who has remained unwaivered throughout everything that has happened and without them I wouldn’t still be here. But unfortunately they can’t be there all the time because of work and so on.
I have a few health issues of my own, and I struggle with loneliness and the feeling of isolation as I never see anyone, I’m easily tearful a lot of the time. I have depression and anxiety which has stemmed from issues relating to home and other factors and I have also piled on a lot of weight due to comfort eating from the depression. In addition to that, I have been diagnosed with chronic venous insufficiency, have lymphedema in my right leg and severe sleep apnea, so I sleep with a CPAP machine. I used to stop breathing 92 times an hour prior to my diagnosis. Sometimes I wish I’d just stop completely. I’m sure many other people are in the same boat, and I feel guilty for coming on here and talking about myself like this. But I’ve come to my lowest point, where I wish often that I wasn’t here anymore.
I hate myself for becoming the way I have. I know it’s not just down to me, but even so, my self-esteem is non-existent and I struggle each day helping to take care of my mum and watching her get less and less every day is just… I can’t even think of the words. I keep questioning myself, what else can I do? am I doing enough? I sit up at night worrying about it until some nights around 4am, driving myself crazy. Nights are the loneliest time when there’s no one around to talk to.
My mum is at the stage now where she sleeps a lot, doesn’t engage much and I don’t even know if she knows who I am anymore. A few weeks ago when I was knelt in front of her, I took hold of her hands and I told her I was sorry. Sorry that I couldn’t make her better and sorry that I couldn’t stop this disease. She just looked at me and smiled and said… maybe you can. I can’t really go very far in terms of time with my partner because we have to toilet my mum during the day, so I feel like I’m trapped here in a sense. It would help if I had, had a better relationship with my father which has never been good.
Tonight my upset was ampliifed when my mum’s carers came in and told me that they are no longer toileting her, either at night or in the morning. They have been instructed by their manager who says she has been instructed by Occupational Therapy, that they are not to do it anymore because it is too in their words “mauling” for them and my mum. I am speechless. It is down in the care plan that they toilet her, and having spoken to OT myself today and having had a visit from them yesterday, never was it mentioned that this would be happening. I don’t know what to do! I said, you might as well fetch her a wooden box while you’re at it! She’s not allowed to walk anymore, she’s now not being toileted! What next?! No showering either?! This is all, aside from my own low mood and mental health, what has brought me here tonight.
I appreciate I’ve kind of written a mixed bag in a forum about carer’s health, but I don’t want to write multiple posts which might be just as annoying. But I would appreciate any thoughts / advice.etc - I’ve always been led to believe that leaving someone sitting in their own business or lying it, is classed as abuse. I really don’t know what to think or say anymore. I can only say it’s making me more ill. I am so tired from trying to fight for things, my partner has taken some of it on. But I just feel like I’m not coping and I don’t know where to go or who to turn to.