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Emma1894 posted an update in the group Community Chat SP 3 years, 1 month ago
Hello everyone,
I hope this is ok to post here? I’m really enjoying our Zoom group sessions but sometimes I find I can’t fully express my feelings verbally. I private messaged Mel a couple of weeks ago to explain briefly but wanted to share more here. I apologise now this may be a lengthy post and will be sharing some personal issues and feelings so if you wish to not continue reading, that is fine…
For some of you who’ve spoken to me a few times, you may already know some of my situation but I’ll start with a bit of background. Basically, I’ve been living in my own home for the past five years with live-in care. Sadly, the quality of care was so bad my Mum gave up her job to care for me while seeking other carers. During the first lockdown, we came to the decision finding a suitable full care team would be impossible and I would likely need my mum’s support for the foreseeable future. Therefore my parents bought a bungalow last year and we are currently three-quarters of the way to getting it renovated. My mum is currently living with me full time until the work is complete and I can move in.
At the moment, I do my work and do Zoom calls in my bedroom but require the door open so I can enter/leave at will and the way my bedroom is currently set up, I can’t open the door myself. Therefore, I don’t have much privacy in my house as my mum is usually in the next room. So, when we have our Zoom meetings, I feel I’m restricted in what I can say as I don’t want mum to overhear. At the same time, I’m reluctant to ask mum to shut the door because it is out of the ordinary and she’ll suspect I’m talking about her or things I don’t want her to hear. So, a couple of weeks ago when we were discussing parents, I had to be careful what I said, when in fact I had LOTS to say on the matter. Also, due to my poor sight, I can’t access the chatbox on Zoom so sharing my thoughts there wasn’t possible.
I’m hoping in the new house, I’ll be using a study, in which I can close the door when I’m working and chatting on Zoom. So I can chat with you all more freely then. Plus, it’s a bigger house and so hopefully that time of day my parents will be at the back of the house in the lounge.
In the meantime, I wanted to share a bit about how I’ve been feeling the past few weeks. So, when the building work started a month ago I was pretty excited but as the weeks have gone on it has been more stressful and overwhelming at times. As this is my parent’s house, I technically have no say or input in the decisions but mum is constantly ranting and moaning about the decision they have to make or that when she visits the builders, she complains things are unfinished.
I do have a saying when she does this – “I’m just the tenant” – which is true. I have very little say in what happens other than the decorative options and even if I could make decisions, mum wouldn’t trust me. Then when she complains things aren’t finished, I just think “have some bloody patients!” From what I’ve heard, the amount they’ve done in four weeks is incredible and the prediction is 6 to 8 weeks, so it looks on schedule to me.
I feel mum gets negative over the silliest things and it puts me in a bad mood. I have the mindset it could be worse (eg war/poverty) and in the words of Eric Idle “Always look on the bright side of life”, but no matter what I say or do she doesn’t. She was so depressed about it last week, that she played the silent treatment on me.
Then this week, mum suddenly told me that if it goes to plan, I’ll be moving in end of May, which shocked me because I need to give a month’s notice on my current property and I was hoping to move in gradually (eg move non-essential items first and decorate) then move in properly end of June/early July. She then explained her idea was to have me move in first, empty my current house then give notice a few weeks later. I get that but I wasn’t mentally prepared to move that soon. Also, I still don’t understand how that works practically – I move in with minimal stuff and stay home alone while my parents go back to empty the rest? I was hoping to give notice first, spend the notice period moving stuff and decorating and move in. Also, during that period, I’d take time off work to concentrate on organising the move and adjust to living there. But if I’m just going to move in with nothing to do, I may just keep working (I’m a bit of a workaholic lol).
I don’t think my parents fully understand what a big transition this is for me and it’s occurring to me now how anxious I am. The only things I’m looking forward to are leaving the town where I currently live and have more smart features in the new house. Other than that, I’m slightly terrified of living with my parents again, particularly with my dad. We have a strange relationship in that we’ll discuss football and music but hardly anything else. I think it is partly because in my early childhood he was away on a ship in the Navy and then in my teens I moved to boarding school and we’ve never properly lived together since. Sometimes I think he forgets I’m 28, not 12 and I’m anxious about how he’ll treat me when we live together. Also, sometimes I get the feeling I’ll feel more lonely with both parents than I do now because they have each other but I have no friends or a partner close by to keep me company.
Also, I’ve got the small matter of re-assessing my social care support too. Currently, I can use my direct payment to pay mum as she is in my house but usually you can’t pay family members you live with. We’re hoping to fight it and I’m hoping to get support from The Disability Union (suggested by Lucy Currier on one of our group chats – thanks Lucy!). But I feel mum doesn’t appear overly concerned by that at the moment. Plus I still need to sort out additional care support, whether that be domiciliary or live-in, I don’t know yet. I just don’t like the uncertainty at the moment.
So that’s my situation. If you’ve read this until the end, THANK YOU. I was wondering in some future group sessions could we discuss “dealing with other people’s negativity”, “dealing with change” and “loneliness” but without verbally speaking aloud about my situation for now?
Thanks again and speak to you next week 🙂
Emma Purcell
Hi Emma, Yes I read to the end! Don’t worry about writing long posts, I totally understand about not being able to speak freely. I live with my friend Janet, and our downstairs is basically an open plan living room/kitchen area and that’s where my bed is (and given I can’t move from the bed that’s where I am!) so I don’t really have any personal space of my own. She’s pretty good at giving me time to myself for things like our zoom meetings, but given the kitchen is in my space I don’t really feel I can ever say ‘Don’t come in’ as it means she can’t get food/drink (unless I’m using the bedpan or something, that is a boundary I DO set!!) so she could also walk in at any time and hear what I’m saying – don’t worry she can never hear anyone else as the sound plays through my hearing aids so fine for privacy from that perspective. Anyway, totally understand where you are coming from with lack of being able to speak freely, even if I can say what I want about my mum!
Building work is always hard work, I know it must be difficult feeling like your mum is always being negative when everything is on track, but at least if it IS on track you won’t have to deal with her negativity over it for two much longer. Regarding the arrangements for how you move and how you are feeling about it, have you tried talking to her about how you had envisaged the move going and explaining why in relation to your work etc? Like you say, parents can still see us as children and try to decide everything, but you are very much an adult and have good reasons for wanting it the way you have suggested. I don’t know about your mum, but I find with mum often I suggest something and she dismisses it straight away as stupid and her ideas are better, but she will carry on thinking about it after the conversation and sometimes either comes back to it again herself, or if I raise it again a while later will have a more open view on it…so maybe if your suggestions don’t go down well the first time, try to stay calm and just explain your reasons but just let it go and then come back to it at another time (when your mum is a good mood and not builder stressed) and see it goes better? You have good reasons so if you can explain why hopefully that will help
As for your dad, I think I would be nervous about moving back in too, but you might find the fact you’ve never lived closely together helps in some ways as he’s never properly lived with you as a child, so it will be easier for him to adjust to treating you as an adult? It’s not quite the same situation, but my parents divorced just after I turned 7, and I never lived my dad after that – I visited him but never spent any prolonged period of time with him. When I was 25 I had surgery and was really unwell afterwards and was having multiple seizures a day (turned out to be a really bad medication reaction but we didn’t know that at the time and I went to stay with my dad for a bit. Whereas my mum would have treated me as a child, my dad didn’t really – it’s partly his personality, but also I think it also helps that I have never been in that situation with him as a child. So maybe you will find I similar thing, and it’ll give you an opportunity to get close to him as an adult and start a new relationship. It’s never too late! Since the pandemic, I talk to my dad once a week on zoom (he lives in France), prior to that we only spoke maybe ever 3-4 months, and it’s been really nice getting to know him more even though we weren’t close before (and yes, he mostly talks about football, which I have no interest in…for the beginning of Covid he mostly talked about online shopping slots so I see it as an improvement!)
I think any change is always going to be a bit overwhelming and anxiety provoking, but we are pretty adaptable! Once you are in the situation you will be fine – thinking about it in advance is always the worst bit, so if you are managing now, you’ll definitely be fine when it gets to happeneing!
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