I have to admit that I am already crying as I type this. It’s so hard. My mum (not biologically my mum, but she has been in my life since I was 2 years old) had a catastrophic stroke June 2020. We came very close to losing her, but she rallied and made a good physical recovery. She is mobile although struggles with pain down her right hand side although this managed well with pain relief. She has been left with aphasia and some cognitive issues. Her speech is very muddled and she will avoid speech therapy if she can. If I am honest, I am close to giving up with the speech therapy side of things because she has no interest in it at all. We have done speech therapy in a variety of ways, but she will say she is poorly each time we have an appointment for it to get out of doing it. Her personality has changed quite a lot, which I am really struggling with. My mum was the most kind, lovely, caring and generous person you could ever wish to meet pre-stroke, always smiling, very popular in her home town, everyone knows her. But she has become very serious, hardly laughs or smiles and is only interested in watching the same programmes on TV each day. She is quite dismissive of myself and my dad, but seems obsessed with her best friend. They have been friends all of their lives and are more like sisters. If there is any family event or meal, the best friend has to be invited. If I make a roast dinner, I have to plate one up for the best friend and I am reminded constantly about it. These are just a couple of examples, but if I am honest, I find it really hurtful as I barely even get a “hello” when I go round to my parents house and am treated as someone who is just there to sort out any problems. Dad has been caring for mum, but he is 72 and has now been diagnosed as having had a stroke (found a blockage in his brain after he had an MRI scan whilst we were getting him tested for dementia) and now seems to keep having TIA’s. His memory has never been great, but it has deteriorated rapidly in the last 6 months. They are still capable enough to live on their own, but I am the one doing all of the caring. I have power of attorney for them both and am doing the best that I can. Literally taking them to all of their hospital appointments, doing all of their admin (they have only recently retired after running their own business for over 30 years, so I had to hand the over business as well), having daily phone calls with dad to tell him what he has on that day if I am not able to get there physically, sorting out their medications, etc. But I work full time and have just started a new job. I am also trying to study for a qualification, but I keep finding that I am putting my stuff on the back burner to sort their stuff out. I do have a brother and sister, but they don’t drive and haven’t been on hand to help over the last two years. I feel like I am drowning. My dad only sees his and mums life as the priority, everyone else has to fit in around them. And I am trying, but it’s now clashing with my work. I ahve been to A&E more times than I can remember recently due to dad’s TIA’s and we are still waiting for appointments from the stroke and TIA clinic to do further investigations on dad. I keep trying to set things up to help them both more, such as an aphasia support group, but then they decide at the last minute that they don’t want to go. They don’t seem interested in trying to help themselves, but I don’t know if they don’t want to or if they can’t. But my frustration is rising, I’m finding myself losing my temper and getting exasperated, but then feeling guilty. I feel like I’m trying to do so much to help, but they are not helping me to help them. I don’t know if any of this makes any sense, but I just needed to vent as it feels like I’m failing everyone and everything. Thank you for reading, if you got this far. I just don’t know where to turn.
Hello @VickieP. I am so sorry to read the story of the situation you and your parents find yourselves in. It is not a sustainable position for any of you. Find out what help you can get, speak to your GP about how you are feeling. You cannot realistically help them if you are unable to find the self care you need, and all the more so if they are not knowingly appreciating where you are in all of this. You are clearly a deeply caring person who is trying to cover all bases and the result is spreading yourself very thinly. Look for ways of lightening your load as @Loshy suggests. Wishing you some peace, take care of yourself, Julia
Sorry to hear of your situation. I too Know the struggles with siblings to do “their part”. It’s impossible in many cases and hurts deeply. It took me a long time, but I spoke to my parents gp and said they weren’t coping and that I couldn’t be there 24/7. An OT assessment was made and necessary work on the house took place by the end of that week! Disability /carers benefits can be sought to pay for things like taxis, cleaners, gardeners etc (I know as I have sorted this) which all help ease the strain. Also putting boundaries in place helped, it was met with resistance at first but I percevered and it’s paying dividends. It also gently encourages their independence and takes away a lot of reliance on you. I feel your pain and frustration but there are solutions, however small , which can make a difference. Good luck.
Shwmae @VickieP, it’s a tough one being a carer. My only suggestion for aphasia would be to introduce topics they are passionate about, discuss things from the past, keep conversations light and amusing. I have had wonderful conversations with fellow stroke survivors who have severe aphasia, and I didn’t glean much from most of the conversation, however, they were talking and smiling, and laughing. That’s got to help encourage them to speak. Body language is important too, if your body language is positive it helps relax another into feeling like they can speak unguarded.
Hi @VickieP
Sorry to hear about what your going through with your Mum and Dad. I can’t offer too much in the way of advice that hasn’t already been said above but just wanted to let you know that if you ever want to vent at someone who is going through something similar, I’m here.
My Mum (75) had a pretty big stroke in Nov 2021. We nearly lost her but she pulled through and although her speech and cognitive ability hasn’t really been affected she still has no movement down her left side, is still on a restricted diet due to dysphasia & has a PEG tube for all her meds and some nutritional supplement.
She lives at home with my Dad (79) and has carers coming in 4 times a day but as an only child I’m now needed to sort out most of their affairs. Dad’s memory isn’t great either and he’s got a lot to deal with now being Mum’s principal carer so of course I’ve been happy to do as much as I can for them but it’s really hard. I work 4 days a week and have 2 young children of my own so it’s a constant juggling act. I feel like I’m constantly on call and I my stomach churns every time the phone rings & I see their number come up as I just know there’ll be something else for me to sort out.
When something like this happens it’s true what they say about role reversal. I don’t feel like a daughter anymore. I don’t see my parents in a sociable way these days for a coffee and a catch up and chance for them to see their grandchildren. It tends to always be to sort something out, deliver medication etc. So some of the things you’ve said really resonate with me. I found this forum really helpful when I’ve been feeling low so reach out and rant as much as you like xx