Continuing the discussion from Struggling:
Hi ann1,
Just to add my pennyworth…re .the issue about having one’s own life, alongside whatever caring responsibility one might have shouldered.
It doesn’t come easily…it sounds too “selfish”, but only in the context of having a partner who cannot make those kind of choices. I wouldn’t Have thought it selfish to do my own thing when my OH was in good health, but now that he is not, it does seem selfish to do something just for me, and to put my needs at least alongside his if not in front of his at times.
But the way I see it, he has Parkinson’s, I don’t. Yes, I am willing to do what I can to ease his burden and to help him live something approximating a normal life, but there is a limit to that, though in the immediacy of the moment and the urgency of his need, that is easily forgotten, which is where my resentment and anger begins to build. People talk about marriage vows or their non married equivalents…I think that is an emotionally manipulative trap . If I look after my husband, it is because I choose to and want to now, not because I made vows donkeys years ago , the potential consequences of which I had no idea about at the time ( and probably wouldn’t have made if I knew what they might entail…not that I would do any different now, I’m just saying)
There is no more training as to how to be someone with PD as there is for how to care for someone with PD, though plenty of advice and info for the latter . We all muddle through as best we can, with the help of friends if we are lucky, this forum, various professionals ( again if we are lucky on that score).
It is, for sure ( IMO) so much easier to be a paid carer, and have a home and healthy partner to return to after a long and hard day’s work, with whom to share the trials and tribulations of the day . But if there is no escape at home…?