Discussions By Condition: Rare Disases

Caregivers and patients of a movement disorder: an opportunity for harmony.

Posted In: Rare Disases 0 Replies
  • Posted By: distoweb
  • April 15, 2010
  • 08:42 PM

Hello friends.


It’s 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.


These keys are based on a few very simple concepts. On one side, generosity. On the other side, gratitude. On both sides, mutual understanding.


It is not easy, of course, to enter another's mind and know what he/she needs. It stands to reason that the patient needs more the caregiver than vice versa, although this does not relieve him/her to understand that the caregiver should not become kind of a slave. Indeed, I feel caregivers need a big amount of understanding very often. Anyway, I guess that affection and the best intentions make everything balance fairly and appropriately.


And I say 'guess' because each case is really one world and it is probably impossible to standardize behaviors without being unfair in many cases. I apologize if this discourse is unfair to someone.


However the logic dictates that if 1. the patient’s expectations about the caregiver and 2. his/her actual situation due to that special relationship with the closest environment (including the caregiver), are quite alike, the patient should probably cope with the disease much better.


So, what do I expect from my caregiver? Let me answer from my experience.


I hope my caregiver to understand, for example, that I often feel uncomfortable; that I regret very much to have to rely on you; that I am careful not to share many of the things that hurt me and suffer alone; that I sometimes feel even ashamed; that it gives me security knowing that you’re on top of me; that I am also very conscious of your right to enjoy life; and so on.


And how should I contribute as a caregiver? Let me also answer from my experience.


I must basically provide understanding. The rest will follow. I must understand how important my role is in your life. And I should understand the meaning of your constant self-sacrifice. Moreover I feel I must demonstrate my commitment finding practical solutions. I must calm your fears. This way I just need to imagine if I was you and wonder what things should alleviate my anxiety.


More reflections regarding caregiving can be found in www.distoweb.com (site about movement disorders), button 'The role of the caregiver'.

I guess the solution to all problems is what we call ‘love’. But sometimes we forget this very easily.

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