I’m Gem, and my mum, just turned 70, was diagnosed with PD in June. It apparently is not bothering her all, but I have many layers of worry and confusion going on in my head, hence this post. I’m not sure whether I’m actually in the right place, and I don’t know how much of this is even to do with PD. But for want of any better idea, here I am.
Background: Mum had had several falls, so I suggested she go to her GP. I was surprised she actually went as she’s never really trusted conventional med/doctors - for good reason stemming from past experience. GP noticed the hand tremor and referred her to Neurology. She had one appt in Neurology, was disgnosed with PD in that appt, was offered medication, declined it, and was discharged. That was it - no advice, no information, no links to support groups, no follow up. Is that normal?? It seems wrong to me, to be given that diagnosis, alone, out the blue, and no support offered. If I had any inkling she would be given news like that I would have gone to the appt with her. There’s been no conctact (as far as I’m aware) from the GP since she was diagnosed either.
Maybe it is normal, maybe I just feel angry because I feel like it’s me who actually has to deal with that diagnosis. And I am pretty much on my own with this. Mum’s basically ignoring it, as is her absolute right. But I have concerns - about how well she is coping. It’s hard to be sure as I don’t live with her, but I see her every week and she doesn’t seem to be keeping her flat clean anymore. The garden is neglected. I don’t think her diet is great (and she seems well aware and totally fine with that). And since she was diagnosed I’ve realised that actually she’s very different to who she was 3 or 4 years ago. Sometimes I get upset because I feel like I’ve lost my mum. We don’t have the same relationship anymore. All I do is worry about her and interrogate her about her health and her finances (she has little income and asks me for money every so often) - and get annoyed with myself. I’m terrified about the future because I feel like I’m in a precarious place right now even without worrying about mum - I rent my flat, I’m trying to find another one that’s near mum as neither of us drive, that’s downstairs because she is already incredibly slow moving and I’m worrying about that getting worse. But that’s proving impossible. I’m in a fairly low paid full-time job and don’t have a lot of money or time. Like everyone my bills are going up and I don’t see things getting better. At the risk of wallowing in self-pity, I’m 39 and had not envisaged having to think about looking after a parent at this stage. I am not anything like remotely prepared for that.
I feel like the problem I have is that
- I don’t know exactly what mum’s situation is - I have several concerns and notice various symptoms/traits but I don’t know what is down to PD, what is possibly a dementia-type thing(?), and what is just mum being mum
- even if I did know, what could I do about it - as far as she is concerned (so she says) she is fine, I don’t think she would want any help/intervention. How do you deal with that situation? How do you accept it?
I feel completely lost with all this, and I feel like it’s all on me because mum doesn’t have friends or anyone else she is close to, there isn’t really any other family around to help. I feel like I need help, this is too much for me to deal with. But I have no idea who would be able to provide that.
If anyone has any advice obviously that would be amazing - I may be expecting too much there. But if anyone has had similar experience/feelings, I would love to hear. I would also be really interested to know if there are any rules around how a Parkinsons diagnosis is made and communicated. I know care is taken now around cancer diagnoses, which I guess is in a different league. But if mum’s experience is the norm, I feel like there is a lot of room for improvement.