Caregiverís role

It isnít easy, no doubt, introducing into the patient's mind and knowing what (in our case) this patient with dystonia or any similar movement disorder really needs from you caregiver role. And it doesnít seem easy, in contrast, being certain of the reasons that move the caregiver and how this feels them. Both patient and caregiver deserve such amount of understanding. This way, only affection and best intentions make everything move forward fairly and effectively.  



Which are the keys to this relationship? Is it very different from any other relationship ruled by love? Those keys (even if the caregiver receives any remuneration) are based on a series of very simple concepts. On the one hand: generosity. On the other hand: gratitude. And finally, in my opinion: mutual understanding. Of course, that's theory. Each case is a world and itís probably impossible to standardize behaviors without being unfair in many cases.

 What do I expect for my caregiver?

If I put myself in that role, that (as many other people) I know very closely, and being honest with the world, I must admit from you, my caregiver, that:



  • .         I hope you understand me especially in the psychological field

  •          I hope you understand that one never accepts completely his/her situation

  •          I hope you understand that very often I'm sorry to have to depend on you

  •          I hope you understand that I often feel that I disturb you

  •          I hope you understand that sometimes I am ashamed of my situation

  •          I hope you understand the pain that I often suffer alone in complete silence

  •          I hope you understand the pain involved in each one of my resignations

  •          I hope you forgive my unfair reactions or slights due to my frustration

  •          I know that knowing youíre going to be close to me gives me security

  •          I want you to know that I am afraid of losing you, and the anguish that there comes

  •          I want you to know that I know are obviously entitled to enjoy life

  •          I want you to know that I would like to pay you so much for your efforts

  •          I want you to know that I need you so much

  •          But, above all, I want you to know that I love you beyond the need



And on the other side, what should I do as a caregiver? After thinking about it, let me also answer from my experience:

  •          I should be so understanding (and the rest will follow)

  •          I should understand the importance of my role in his/her life

  •          I should know how to transmit the as much normality as possible

  •          I should understand the grief owing to of each of his/her resignations

  •          I should show my affection by developing practical solutions

  •          I should reassure the patient about all sorts of fears

  •          I should put myself in his/her place and wonder about that anguish

  •          I should be able to prove that the situation doesnít make a slave of me

  •          I should understand certain reactions due to pain and frustration

  •          But, above all, I should show how much I love him/her exactly the way he/she is


I guess the solution to all problems is called love, but it seems sometimes we forget this.


[Itís years ago that I play the double role of patient and caregiver, both related with movement disorders. I suffer, as you know, from generalized dystonia; my wife from MS. So I think I am in the best position to reflect on the keys about the complicity and support from the caregiver, and what the sick expects when being on the other side].