New to all this and wanted to say hello

[RachelK]

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

[Victoria_1806]

@RachelK thanks for sharing, …& congrats on navigating from other post to create this one!
I know lots of our forum friends will offer their welcome & thoughts…

It’s not selfish at all!! If it’s ok with you I know a few of us may have a few questions to orient ourselves if that’s ok?!? Like -

• whilst she has better mental capacity has the assessment of her house and caring situation ensure her ‘safety’ to be on her own at home?
• what’s the caring situation / plan in her home?
  Perhaps @bowlingbun can help with better questions than I have on ensuring the right steps were followed…because as an outsider and with what you’ve said - I’d also worry about your Mum.
  Everything you’ve said is logical, makes sense and I don’t want to worry you, you’re doing lots of that for her already! As well as for yourself! I wonder if you can challenge the decision - for your Mun’s sake as she may be over-estimating her capability…Or is there family support from others?

The most difficult challenges I’ve faced is advocating and championing for my dad when he argued that he could do things himself (despite having knarled fingers, toes, lymphodema, rheumatoid …etc etc)

Do you have Lasting Powers of Atorney for your Mum?
Do you have action-supporters (not just the bystander hurling ‘shoulds’)?

Discharges are horrible and challenging but any disruption of relocating can cause issues if someone has some challenges with their mental health…let’s see what our friends say here
@Charlesh47 @Pet66 @Melly1 @susieq @Ula @Chris_22081

[RachelK]

Ok, so she has mental capacity but full assessments on her house took place last time she was discharged. There’s steps into the kitchen which frightens me and also she can’t get in/put of the bathroom. She’s having a further assessment when she’s home next week, but the house hasn’t changed and the same hazards are still there.

I’ve spoken to the social worker several times about my concerns to be told, it’s her decision to make and she seems to understand the risks. I can’t force her to go into full time care it seems and the social worker shares my concerns and is also of the opinion that another fall or several is very likely. Which is not at all helpful!

She will have a care agency organised by the council going in four times a day for personal care, medication, food prep and also a call during the night. I hate the idea of all those people going in and out… but I have to go with it.

Mum had the sense of putting LPAs in before she went on the decline so thankfully I don’t have to worry about that as it’s all sorted and I can deal with her finances etc for her. In terms of the healthcare one, it’s there but I can’t appear to act on anything while she has the capability to decide things for herself in terms of where she receives care.

I’ve had little to no support from the local council, most of what I’ve found out or learned so far has been through my own research… thankfully I understand most of it, it’s very complicated in some areas!!

Would be great to know if anyone else found this out in terms of lack of support from authorities? Maybe it’s because I’m not local to her…

Needless to say I am not looking forward to what happens when she’s at home

[bowlingbun]

What I’m going to say now sounds horrible, but my mum was in and out of hospital for years. I wish I’d done things differently. When mum is discharged, you must NOT go up and sort her out in any way. Leave that to the carers. Turn your answerphone ON and leave it on. Tell mum you will ring her every evening at 8pm.
I predict that she will be back in hospital within a day or two. Then they must accept that however much she wants to go home she NEEDS residential care. Are you aware of the link between PD and Lewy Bodies dementia?
One of our members, Charles, is an expert on mental capacity, and he stresses the understanding of the consequences of any decision. I’m sure mum wants to go home, don’t we all want to be at home, but does she understand how unsuitable it is. Hospitals are just interested in getting their beds back asap.

[bowlingbun]

As you have POA, think if mum would be better in a home near you, or near her friends. Then try to find one, looking at CQC reports to start with. The best homes have waiting lists. Is mum getting AA, and claiming exemption from Council tax due to severe mental impairment?

[RachelK]

Thanks, I sadly think you are right about her not being at home long and the social worker said exactly the same thing. I do have two days off so I wanted to be there to at least get her some food in and see what nonsense she tells the physio and social worker - she’s got some ‘learned responses’ and seems to be good at telling them what they want to hear. I suspect after I leave it will go downhill rapidly!

I know about the Lewy body dementia and reading it up online I suspect that is what is going on, but as she’s been in and out of care/hospitals it’s never been possible to sort a proper appointment so it’s all diagnosed, but the term has been mentioned to me numerous times.

[RachelK]

She’s been in a nursing home on a temporary basis since June and I think she’s been a lot safer and also getting on well in there. Before with the hospital and whole fiasco she lost over four stone, she’s a tiny little woman anyway so was skin and bone! She’s put some weight on again and looks much better, but that is because of the care she’s had in the home.