Mum newly diagnosed, me confused.

Living with Parkinson's Carers, friends and family
1

Hello all!

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

  1. 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
  2. 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.

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Hello and welcome to this friendly forum, @pandion. You’re naturally very concerned about your mum. Who wouldn’t be? As well, this diagnosis is recent so new to both of you. There’s a lot of learn but with time you will be able to navigate these waters together. The other forum members will be along soon to let you know how their own experience has been when it comes to getting support from their caregivers. It’s certainly very difficult if things go quiet when you still have so many unanswered questions.

I’d encourage you to explore our website and particularly this page about caring for someone with Parkinson’s. This can be a real challenge and it’s important that you always take care of yourself throughout. You’ll find other information about new diagnoses and about the dementia that is sometimes seen with Parkinson’s.

Have you had a chance to talk to our helpline advisers yet? They can offer good support when you have questions and need an ear. This would be invaluable during times you aren’t hearing from your mum’s team. You can reach the helpline on 0808 800 0303.

Sending you my very best wishes,
Janice
Forum Moderation Team

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Hello and welcome pandion,
I think many carers and patients will identify with many things you have said. First of all, a diagnosis comes as a huge shock and for many thats the first emotion which takes a while to subside. PD affects individuals differently and I can only tell you about my own experiences around my father’s journey with it.

My father was diagnosed quite young and would have been considered young onset. Unlike your mum he went into the system early, in terms of medication etc. I dont know if there are rules as such, around how a diagnosis is delivered but my opinion on his care so far is one of a system under pressure, no joined up approach, some poor professionals but also some excellent ones and a pandemic hasnt helped E.G.

GP constantly has to be chased. Sometimes a phone consult is offered which is no good, my dad’s speech is poor and nothing replaces going into the surgery. Ditto for the chemist, meds left short etc. Local PD nurse unavailable, the role changes and one leaves and another starts. Neurologist is good but Covid meant video calls, technology can be a barrier. My dad was never offered surgery so im not sure if he was a candidate. Orhers on this forum will have a different experience and variations with their care.

In terms of your mum’s situation, either she is doing okay for now or she is not in a place of acceptance just yet. In effect if she is declining medication, the interventions may take longer to kick in. As carers we may not always agree with a patient’s decisions but it is their right all the same.

Only you know your mum the best and how you can move forward but my advice is to prioritise your concerns and work on the most serious ones, break them down into small tasks. It might be trying to organise an alarm for her so that she can alert someone in a fall. Or agreeing and eliminating fall hazards in the home, organising a cleaner etc. She may agree to you applying for a companion bus pass so you can accompany her. If your mum was ever admitted to hospital after a fall, sometimes the social work department there are aware of the services in your area for vulnerable adults. My own experience of hospitals is that they actively try to prevent falls reoccurring, meaning referrals to occupational therapists to assess walking with frames or physiotherapy to promote better posture. It really depends on how your mum is now and how rapidly she may decline. Your mum may choose not to engage but it’s still important to keep the conversations open. Doing nice things also helps and encourage her with things she can do.

Please also telephone the line as already outlined by the site admins. They are great to signpost you in the right direction or just to listen. Good luck and always come back here for moral support or search old threads. Mind yourself xxx

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Hello pandion and welcome to the forum.
I can quite understand how your world has been completely turned on its head since your Mum’s diagnosis of Parkinson’s in June, I see Janice P has already replied to your post with a guide to where you can find information etc., and i hope you will find this useful. I have been giving some thought as to how i might best respond to your post as you raised several points… In the end I decided just to pitch in using sub headings for clarity. So in no particular. order -
The Diagnosis. I agree this is not the way to give anyone such a diagnosis however, it is more common than you might think. Neurological services vary across the country and you don’t have to read many posts here on the forum to know some people. do not even know their consultant’s name or are not able to contact them etc, You will also find posts where the diagnosis was given in a similar way to your mother’s. It shouldn’t be so, but it happens.
What to do? It is difficult to know what you can do in the circumstances as your mother is the one with the diagnosis and you weren’t present at the time to hear what was actually said. I’m guessing here, but if your mother refused medication there is little more that the hospital can do at the moment, hence the discharge. I suspect that as your mother’s condition deteriorates she will need to go back to her GP when a new referral could be raised. You could perhaps try contacting her GP yourself but I suspect he or she could not discuss your mother’s situation itself but may be able to give you some general advice about how the system works. (As an aside, GPs are, as the name suggests, general and are not necessarily particularly knowledgeable about Parkinson’s per se)
Your mother’s choice. Everyone with a diagnosis of Parkinson’s has to find their own way to live with it. There are no right or wrong ways, only that which is unique to the individual. Your mother seems to have decided that her way, at the moment, is to basically ignore it. It could be that she is still coming to terms with it and trying to understand what it means, it might be that she is in denial and not ready to accept the diagnosis, she could be scared by the diagnosis and fearing for her future perhaps so the easiest thing is just to ignore it. My point being that whilst you wrote ‘Mum’s basically ignoring it as is her absolute right’ it may not in truth be that straightforward. However, Parkinson’s is a slow moving condition for most so it is likely she has some time on her side to work things out, if indeed that is the truth behind her apparent ignoring it.
A different person. You wrote that since her diagnosis you’ve noticed that she is a different person to that of 3 or 4 years ago and you could well be right. Many of us have symptoms a few years before diagnosis that can be quite easily be explained away because in themselves they only seem to be small incidental things - only gradually does it occur these may be adding up to something more serious. This may have co-incided in your Mum’s case with when you suggested she go to the GP because of her falls - again I’m guessing but it would seem to fit. I have no wish to put words in your mouth, but when your mother was given her unexpected diagnosis it allowed you to see things in a different light and that which you might have previously not noticed or did not give any particular weight too has suddenly taken on a whole new meaning - because now she has this thing called Parkinson’s and in your head that has changed everything.
You. For me the most telling paragraph of your post is the third one where you are describing your own feelings about what has happened - your anger, your grief, the responsibility you are feeling etc. etc. These feelings are all absolutely normal and like your mother has to find away to manage her diagnosis, you too need time to work through all this emotion, feelings of responsibility for your Mum’s well being, the anger, the feelings that there is little you can do etc etc.
The best advice. I don’t know how much of what I have written will help you. Some of it as I said is guessing, some of it reading between the lines based on what you’ve written and some of it by my own experiences and those of others on the forum… I think the best thing you can do right now is stop take a deep breath and accept you are not responsible for everything, it’s not for you to run yourself ragged trying to sort things out for your mother when she may not be ready to address those things yet. The diagnosis is hers, your role as I see it is a supporting and encouraging one. I would strongly recommend that you follow up on JaniceP 's suggestions as a start point so that you start to have some understanding of what Parkinson’s means so maybe you can begin to talk to her rather than to use your word to interrogate her. Ring the helpline and actually talk to someone- that in itself can make a world difference. Finally, you must look after yourself and your own health if you really want to help your Mum and running yourself ragged in ever decreasing circles isn’t going to help anyone not your Mum and certainly not you.
I wish both you and your Mum well. The forum is here whenever you need. You are not on your own.
Tot

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