I am 25 and have been living with my mum who has Parkinson’s for almost 16 years now. I am considering moving out into my own apartment at some point this year. My mum’s house has been adapted with grab rails, walk in showers and profiling bed amongst other equipment and as she owns her home and has lived here for more than 26 years, I don’t want to force her to sell up because of me. Our relationship has been strained for several years now and I think time apart will do us both good and realistically as an adult, I will need to move out at some point. I wouldn’t be moving far and it would be within an approx. 5 mile radius. I’ve already listed the daily/weekly/monthly tasks that I help her with and realistically could still do the majority of them if I moved out.
I would really appreciate any information, advice or guidance from carers of people with Parkinson’s and how you found moving out for the first time. Anything you wish you had known when you went through it yourself? I’m also considering travelling the UK and the rest of the world more and have never done an overnight stay, again, I would be really grateful for any tips.
Hi Shazia,
Well, before anything else I would like to say that is is pretty amazing that you have been looking after your mum for so long,…I take my hat off to you.
Secondly, I am probably not the kind of person you were hoping to hear from , being a wife rather than a daughter or son about to move out. But I have a son ( aged 25) who has lived at home since graduating, and he is trying to leave home, having only recently thought that he would take on more responsibility for caring for his dad.
In my opinion, which is of course subjective, I think that young people have their own lives to lead and should lead them . That doesn’t mean not helping a parent, but it does mean not being their main carer, unless of course you decide that that is what you actually want to do at this stage, and for some it may be . If you were not around, an alternative would have to be found. It can be hard to decide , esp if you are wrestling with what you feel you “ought” to do as opposed to what you want to do.
You might find Hugh Marriott’s Book, The Selfish Pig’s guide to caring” a helpful source of advice…it is mostly written from the point of view of a partner who is the carer, but he is completely aware that lots of other people, including young people are also carers and has a chapter for the latter in particular.
Both my and my husband’s relationship with our son has suffered due to the situation we are in and the effects of the stress that it causes. It is no one’s fault and all too easy for an outsider to say that one just has to control one’s anger or irritation or frustrations or whatever, but as I am sure you know it is not that easy. Relationships matter, and can be damaged in a way that can be avoided, but often is not , which is partly why moving out. Is the right thing to do.
Perhaps you could do it in a staged way ( stay overnight or two or three nights with friends or relatives ) so that your Mum has time to get used to new arrangements and you can be sure that she is getting the quality of care that she needs, or at least good enough care.
I don’t know the detail of your mum’s Parkinson’s or what she needs by way of care, but it can take time to find the “ right” carers, and I would strongly suggest that you meet prospective carers before they start doing the job . I imagine that most of them will do the practical stuff well enough, but it is the personality side of things that can be hard to get right. Don’t be afraid to ask to meet others in order to find the right person for your mum ( and for you if I am honest)
Much as you are wanting/ planning to move out, I suspect you will find it hard, whether due to ( misplaced ) guilt, or concern about how your Mum is doing when you are not there. I only say that to pre warn you as to what might lie ahead. I can imagine that you might find the adjustment to a new kind of life as challenging as your mum might , or perhaps even more so.
A final thought before I go, is whether you might find it helpful to talk to a third party, with your mum, about how you are both feeling about your impending move. It might enable you both to express thoughts and feelings which are hard to say when it is just the two of you, and could help set you both up for a smoother transition to a new kind of relationship, and one that is more mother/daughter, than cared for/ carer.
Wishing you well with how it all goes, and hoping that you take great pride in all you have done and will continue to do, one way or the other, for your mum ,
Pippa
Firstly, I hope that you, your husband and son have been keeping safe and well during the pandemic. Also, I don’t come on here as often as I should so I am sorry for not replying sooner especially as your reply was so helpful.
Thank you so much for taking the time to give such thorough advice. 8 months on, I am still living at home with my mum but am now pregnant with my first child. Thank you for the book recommendation too, I will look into it because as you mention, there is (misplaced) guilt and concern on both sides with my mum (wrongly) feeling that she is a burden.
I don’t know whether I will move out away from my mum now as I imagine we will be upsizing in the next few years.
