Exhausted carer

This post makes me incredibly sad. As a person with Parkinson’s I realise that people will be saying these things about me in the future which makes me wonder what the point is in making an effort to manage medication carefully now only to exist in a future where I am despised as a burden by those who used to value me.
I understand the frustration that unpaid carers feel and I understand the need to express feelings; the problem, as already expressed by many here, is that in a world where health and social care meets neither the needs of those who require it or those filling the gaps in provision, people living with the burden of Parkinson’s also live with the burden of knowing the imposition they are placing on the lives of those left caring for them and a sense of gratitude and dependency that is not healthy for their long-term emotional well-being any more than managing them is not healthy for the well-being of unpaid carers.
I have witnessed frustrated carers making sniping remarks to those dependent on them and stressing the need to be able to laugh about the situation irrespective of their partners feelings, and although it is an unpleasant subject, the degree of dependency and absolute inequality in terms of the balance of power within a relationship created in such situations can lead to behaviours that are destructive to all involved.
A friend of a friend whose husband has Parkinson’s recounts how she now detests and avoids him. She does not like to be in the same room as him and resents his dependency but she is doing her best to meet his physical needs, though does like to make him wait when she is particularly fed up with him. Her friends laud her as a saint for sticking with him while I find her behaviour very difficult to accept but in reality, she is neither a saint nor a bad person. She is just one of two people involved in an impossible situation.
Those left with the burden of caring for their partners or family members with Parkinson’s Disease are no more automatically Saints than those living with Parkinson’s are to blame for the burden they unwittingly place on their spouses or family members. All parties are victims of a system that no longer provides the support that it arguably should.
This website advises me as a person with Parkinson’s that there is much that I can do to manage my symptoms and promotes the power of positivity while at the same time, quite rightly, emphasises the need for carers to be able to express and share frustrations about the impact of Parkinson’s Disease on their lives. There is an imbalance in messages and tone of advice given to the different groups that Parkinson’s UK represents that I have never understood.
The current pandemic has only highlighted how people with Parkinson’s (as well as those with many other long-term health conditions) are perceived by the Health Service - services have been cut with no promise of reinstatement and no guarantees have been given that having Parkinson’s will not mean that people living with the condition can not access lifesaving care in the event of needing it at this time of crisis. The prospect of utilitarian principles being applied to the provision of healthcare linger in the background and people recount stories where these principles have been implemented in spite of claims that ‘difficult decisions’ have not had to be made.
I have never felt so worthless in my whole life.
Parkinson’s is crap whether you have it or know somebody who does. I guess the major difference is that people with Parkinson’s will never escape from it while those living with them have a glimmer of hope of doing so, though I genuinely understand that it probably doesn’t feel like this at times. I like to think that I will take myself out of the equation before I become the cause of the the type of of pain and anguish that everybody is describing, but only time will tell.
Of course if this is how family members feel, I think the chance of greater public understanding the condition is an impossibility. The truth is that having Parkinson’s does not tend to endear you to anybody, I read how some health professionals talk about people with Parkinson’s with a sinking heart. Having Parkinson’s tends to lead to a lonely and dependent existence alongside the constant wearing away of everything you are, every relationship you once had and everything you can do. There are no answers and no criticism is intended; it is just an incredibly sad situation all round.

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