My hwp was diagnosed 6 years ago at 53. He manages well with meds but there is inevitable decline. When I was chatting to the GP practice nurse about covid jabs of all things, she asked if I registered with the practice as his carer. She asked what I did for him. I explained I now do most of the driving, more of the ‘heavy lifting’ around the house, occasional help with dressing etc. these are the things my husband recognises as things I do. He doesn’t ‘see’ the managing that happens to help with his anxiety, the planning made to trips out to make things easier etc, reminding about pills.
The nurse said to think about it.
It feels a big step to register as his carer; an acknowledgment that things are only heading in one direction. I guess what I’m asking is what difference will it make if I do register as his carer. I work so attendance allowance isn’t a factor
I have rather belatedly caught up with your post and I can entirely understand your hesitation in registering as a carer for your husband even though it is clear from what you have written you could easily be seen as his carer. If you type ‘benefits of being a registered carer’ into a search it will instantly bring up a lot of pages giving you every reason to believe taking this step is beneficial. That is probably so, but I don’t think that is really the thing that is bothering you most. I am going out on a limb here and it may not be accurate, if this is the case please do say, but I will try to explain what I think is the real issue for you as clearly as I can.
I was diagnosed with Parkinson’s 15 years ago and since that time two things have become abundantly clear to me in managing my own condition. First it is important to recognise just how much influence your mindset can have on management of the condition and I see no reason why that should not be the same for you as a carer.
Second there is the issue of being labelled - which to me is a double edged sword.
The mindset. For me the most important thing is to stay positive. At the moment you seem to be seeing registering as a carer as one big black hole downwards. That is how many newly diagnosed people see it. The fact is it is a chronic condition for which there is no cure and to that extent you can argue as you put it ‘…things are heading in one direction’ a view that is not easy to argue against. On the other hand you don’t know how your husband’s condition will progress nor the speed of it. So maybe try looking at it differently. Don’t cut off your nose to spite your face. If after reading about the benefits of registering they seem to be offering you something that will help then do so - why not make it easier on yourself if it helps to be registered. You then need to try and find a way to not worry unduly about the unknown future you may both be facing - that would be no different if your husband didn’t have Parkinson’s but maybe had a stroke or heart attack or got run over by the proverbial bus… You would deal with any such incidents as they arose, so why not see Parkinson’s in the same light and live in the present making the most of today. I am not suggesting this is easy to do but your mind is a powerful tool and the negative Parkinson’s voice very loud but you can see things differently if you allow yourself to do so.
Labels. On diagnosis a whole load of labels come with it. Whilst I accept some are necessary in general I dislike them. They lead to stereotypes and expectations of what having Parkinson’s means and how people should be. If you want to you can see bring registered as a carer in the same light. It is even more complex now when so many assessments are little more than tick boxes into which we are all meant to fit. I make it absolutely clear that I do not define myself by my Parkinson’s. As I have said endless times on the forum I am Tot first and I happen to have Parkinson’s. In the same way you do not need to define or see yourself as a carer first and foremost unless you choose to and there is no reason why you can’t do as I do ie challenge those perceptions whenever they come up.
I am not sure how much that makes sense to you, it is a difficult thing to put across as it is largely abstract but in a nut shell being aware of the power of the mindset and how you choose to see your situation and being aware it is possible to change this from a negative to a positive can, I believe, make a huge difference.
Please come back to me if you need any clarification or if I am reading your post wrongly but I hope something in what I have written may help.
Tot
PS I am aware this is rhe first reply you have received. Don’t think your post hasn’t been read. The most usual reason is folk don’t know how to respond or what to say and it can feel like no-one cares. That is definitely not true.
Hi there,My husband is the PWP, diagnoised over 8 years ago now. I received a text one day from our surgery asking if I would like to register as a carer as the surgery obviously have it on record about my Husband’s diagnosis as we have the same GP. The surgery had just appointed a person into the new “Patient Carer role” they had received funding for. Hence the text came from her. I was invited into the surgery to have a health check myself and someone from our local Carers Support service was there and spoke to me,gave me advice on what was available. I was also given a password for when I needed an appointment with a GP. This was meant to allow me appointments at more suitable times/ days. Sadly as we all know GP appointments are like gold dust now so this password will probably not help me at this time. Up to now I have not needed to contact the local Carers Support service or use my password at the surgery but would do if I needed any advice. My advice would be to register yourself as a carer because I am sure you will find it beneficial to yourself along the way. After all there is nothing to lose…
