Hi all,
Hoping for some honest advice both from a human perspective and those with experience working or dealing with the nhs recently.
My mum, 72 and dad, 78, live together two hours from us.
I see them once a month, when the kids schedules, work & life allows. They are front and centre of my mind most days, but our relationship is hard - mainly because we grew up internalising our feelings and there was quite a lot of instability when I was a child - we moved a lot, they broke up, then got back together etc.
My younger sister has taken another tact and has broken off all contact with them for the past five years - although she lives nearby and is very isolated and vulnerable. She suffered more hardship when we were growing up, including some physical abuse, and it's taken a pyschological toll. I'm there for my parents - just about. I want them to feel they can turn to me and that they are loved, and as a mother myself, I understand some of the pressures they were under when we were growing up.
Now they are getting frail. My dad has had Parkinsons - a long term condition - for some years now, and is slowly becoming less mobile. Both parents pushed back adamantly when I suggested he get a wheelchair or scooter so he could retain dome independence (which has always been a core part of his identity), and even that I buy it for him.
18 months ago, my mum was diagnosed with hydrochephalus, a neurological condition that has various different prognoses, but generally needs some treatment.
It took about 9 months to get her to push her gp for some sort of treatment plan, and then it felt she was being fobbed off. At last she saw a neurologist who, according to my mum, told her the hydrocephalus was "very mild" and there was no further follow up. I asked my mum to see the referral letters and to accompany her to her next appointments but she pushed back, saying she wasn't ready to let me become involved and wanted to keep me out of the comms. I felt she didn't trust me, which made me feel frustrated. When I asked for more details on her treatment plan, she started telling me I didn't understand how much the nhs has "collapsed" and now "doesn't treat anyone over 70". I pushed her to go back to her gp for another referral because she increasingly reported dizziness and wasn't (and still isn't) able to walk outside independently.
Then, last spring, she was diagnosed with triple negative breast cancer. I asked to attend surgery, but she cancelled the first scheduled appointment because she had a cold. She had to wait c 2 months for the second appointment and I joined my dad with her at the hospital. I realised how hard my parents both found it to handle comms with hospital staff - my mum had forgotten to bring the consent documents she was supposed to sign, and my dad was agitated throughout the procedure, at one point having a break down in the ward and shouting that he "had to leave now". The hospital staff were acommodating and I tried my best to handle him by reassuring him (it felt like being torpedoed into parent mode again). The procedure went well - my mum was discharged on the same day following her masectomy, albeit with a bit of pressure from my dad who I know she was thinking about when she told the nurses she didn't want to stay the night.
Fast-forward three months and I am adking about her treatment annd care plan going forward. My mum gets anxious when I mention it, but recently told me she had agreed with an oncologist that chemo was not right for her given her hydrocephalus. When I asked her about the treatment plan for the hydrochephalus, she told me there was none, and that the "nurses got confused and thought she had a brain tumour" so hit a dead end with them (I didn't manage to get her to say exactly how, but she told me "they didn't understand").
After a 90 min telephone conversation today that consisted of me asking her to be more involved in her appointments and treatment plan, and her resisting, she finally sent me her discharge letter from oncology, which shows she asked not to have chemo and was referred to neurology. I have now suggested I call neurology for a follow up.
My main question for all of you is it is unreasonable to ask to be more involved? Am I over looking any sensitivities? Is there another perspective I'm ignoring here?
I'm worried comms with the outside world are overwhelming my parents, and while my mum is adamant she wants to "stay in control" she's lost some of thst control already. She tells me "I don't understand the realities", implying I am privileged because I am young, healthy and work in what for them feels like a high paid corporate job (she tells me to "get off my executive chair" and "stop being bossy" when I ask her whst her plan is and to see her paper work).
I guess she triggers a guilt or insecurity in me around being more privileged than them (she always brings up that I earn a crazy amount, as if it were unjust). Maybe I am expecting too much of the nhs in today's world, but the alternative seems to be just to give up and submit to one's fate, which I can't accept for my mother right now, especially as she raised me with a fighting spirit.
My husband tells me not to argue with my mum and just savour the time I have with her, which sounds wise, but in the subtext it feels like he is also saying not to push her to give me answers about her treatment and care plan, and to leave her free not to advocate for herself. I am convinced I should take comms with her healthcare team into my own hands, but really want to retain good communication and her trust in doing this.
I am also aware thst spending extended periods of time at their house, which ideally is what I need to do, will be very difficult for me pyschologically. They tend to fight and shout at each other a lot and the house is really cluttered. I could work remotely from somewhere clean with a bed available, but I'd be sleeping on the floor at their house without a quiet desk space, and added to that, away from my kids who have to be in school.
Insight, advice and supportive words appreciated!