Hi Everyone, I have to admit that I am new to all this and don’t really know where to start Looks as though everyone shares their experiences of their caring journey… so here goes.
I currently leave in Milton Keynes and have main caring responsibilities for my Mum who lives up on the Wirral - appreciate most of my responsibilities are remote based the majority of the time. My Mum was diagnosed with Parkinson’s back in 2012 and has lived quite well with it up until my Dad’s passing in April 2021. Since then it’s almost as though she has changed as a person, she is no longer the fun loving person she used to be and has turned into a bit of a narcissist (this I did eventually find is common in PD) and is no longer mobile or has the cognition to be able to do anything for herself anymore.
She was coping fairly well on her own and would spend a lot of time travelling down to see me and I would spend time with her too. Then she started to change around this time last year, she started to see things that weren’t there, was always sleeping at strange times (again a PD thing) and began to fall over. She had a number of significant falls and ended up in hospital with both arms broken and stayed in a rehab ward for around 3 months, at this time i was travelling up there most weekends where I could, with some help with things like washing and shopping from other family - may be worth pointing out that I am an only child. Following the initial stay in hospital she returned home, I was there for 2 weeks with her sorting out, physio, GP, appointments, specialist appointments, medical equipment etc as by the time she came out she was incontinent, unable to walk and needed carers to help her with 4 visits a day! Three months later, she’s back in hospital following another fall, thankfully no severe damage that time, but her cognition and mind had gone. She was agressive, abusive and had changed into a different person. Social services advised that she no longer had the mental capacity to make her own decisions and put her into what they class as an assessment bed in a nursing home.
Fast forward a little, she’s been in there since the end of June and can now walk a little and her cognition is better than it has been. She had a social worker meeting around 6 weeks ago and as she now has the mental capacity to make her own decisions, she is going home again next week.
I realise it’s selfish of me to say but I would have preferred her to stay in the nursing home as she has done well in there and the stress and worry of her falling has been taken off me somewhat. I am worried what it’s going to be like when she does get home, I am expecting late night phone calls from carers, and again having to deal with up to 30 video calls from her a day most of which make little sense or she is abusive (this is what was happening in her first discharge from hospital).
It’s difficult being so far away and also having to navigate her behaviour all while getting criticism from her friends (my family have all be great to be honest) and also her - it feels like whatever I do is never enough or the right thing and it feels like there is expectation that my Mum moves in with me or I move back in with her. Just to clarify neither of these are an option.
A little about me as a non carer, I am 38 and have a full time and rather stressful job and my husband and I have not long bought our first house.
It would be great to get to know you all and get involved in some of the social side and get any advice from you all, sorry for the longest message ever! Rachel