I'm reminded of the title I chose for Terry's blog, written over the year before his death in 2016. 'Curse of the Caregiver' is so apt. It is a mixed blessing, of course, being a caregiver. You get to spend this powerful, poignant time with the one you love and that is precious. But every day unfolds to present you with the same, incessant truth in the background of all you do. Here it comes... Even in the throes of a fun activity on a very good day: This person is dying, and you are powerless to stop it.
In the context of Terry's terminal cancer, it was made more difficult by the fact that he was unable to discuss his impending death. He insisted on a 'go, fight, win' narrative that became tedious and, finally, ridiculous. But, it was his choice and I respected that by participating in the charade. It was his coping mechanism, and it had brutal post-mortem consequences for me that I'm still paying dearly for.
In the context of Alzheimer's disease, there is a terminal diagnosis that can stretch itself out for a decade or more. The only certainty is that there isn't any hope for a miraculous turnaround. Not one person has survived Alzheimer's, and so every decision made is palliative in nature. The difficulty lies in the fact that no matter what you do and how much you give, the choices suck either way. Even when you've discussed their care wishes and understand them thoroughly, they may regret that choice later when it's time to implement it. At what point should they not be allowed to change their mind?
I see other caregivers put their partner's wishes into action, then take the consequences as if they had made the choice on their own. Strong, supportive, stoic families turn on one another frequently and disintegrate amid misunderstandings and accusations. They judge, uninformed. It can get ugly for the caregiver and the patient.
There is no way to win. All you can do is make sure you've got the medical knowledge and legal protection you need to back your every move. Then, make your choices with a mindset of true loving compassion for your patient and move ahead, ignoring the fallout. If you really want to support a person who is caring for another, then share your opinion whenever appropriate. When they make a choice for their loved one, rally behind their choices and don't withdraw support if you disagree with their decision. That's a real blessing in the face of such a personally defeatist endeavor as becoming a caregiver.
