Caring for mum with advanced MS that whole time. The last year my dad has gotten ill - bad COPD (but continuing to smoke). He refuses to see any doctors or follow up. I suspect he has some form of cognitive issue or other problems. His mobility and speech have deteriorated badly, his sleep is bad - he goes to bed at 6pm and is up at 2am. The past week he has also gotten up at 8pm thinking it was the morning and at 11:30pm. Swallowing issues too and won’t eat, he looks skeletal. Managed to get blood/urine tests done last summer when it all started quite suddenly but all turned up normal aside from slight anaemia. Gets confused over complicated things and no memory loss or trouble with finances but something is still ‘off’. He used to be very sharp but has become ‘slow’.
I used to have carers come in to do personal care for my mum, stopped when covid began and don’t feel comfortable having them back as they switch so much now in terms of different people coming in. They don’t offer anything except doing personal care anyway and personal care is the thing that is the least stress, she is bed bound and completely dependent and cannot feed, dress or even move herself. Cannot talk but can communicate but with limited understanding. She is not on any medication and is overall ‘healthy’ and content.
Me and my dad used to share caring for my mum, he slowly became unable to do much and since last summer i have been looking after them both entirely in terms of cooking, cleaning, medication for my dad etc. My brother comes in the morning to make my dad tea and toast, but no other help apart from that and he wouldn’t do more.
If my dad continues to get worse i know i will not be able to do it and look after him. I turn 37 in two weeks time and have nothing to show for it. I live with them, i haven’t been able to work since 2015, friends all dropped away, i go weeks without talking to anyone other than my dad who i am not able to talk with much any more due to his suspected aphasia. We used to watch poirot and documentaries together and now he will just watch the same show while listening to the radio on his tablet constantly. I miss my dad and how he was. It was easier when we were both in the same boat, now he is slowly joining my mum.
Since 2020 i have left the house a total of 5 times for dentist appointments, something that has left me badly in debt as even though i’d be entitled to free dental care i cannot get it as there are no NHS dentists available forcing me to go private. My own health worries are pushed down. I have bad agoraphobia and anxiety. I regularly break down in tears. I get frustrated over everything. I don’t see a way out. All the while having to watch both of my parents disappear in front of my eyes with no way to stop or slow it.
I am studying at the open university but it will be a few years before i complete my degree. I apply for remote work but get no-where. I am only here because i have no other options. I need to leave but have no chance of having a home or place to live without a job and i cannot get one while i am caring like this and needing to be around every 2 hours.
I’m in Northern Ireland and services here are basically non-existent. How do i stop caring and have a life? Is it even possible or am i stuck here until one or both of them pass away.
When i talk to people they just say to get the carers back [minimal help with more stress], get respite care [my dad would never agree to go anywhere, my mum being gone would likely make him worse and i’ve seen the deterioration from ‘respite’ that can happen with my aunts who also had MS]…
I just want a life, i’ve never been on holiday, not been to a hairdressers or to a restaurant since i was a child, no relationships, no travel, no driving license, nothing..
