@jeanadair123 I have also found it helpful to plan for some time away and have something to look forward to! The monotony of the day to day routine, interspersed with the constant stress of “oh my Lord, what is changing or what is he doing NOW?” is just not sustainable for me without some planned breaks or get-away time on the horizon. I don’t know how much longer I have to be able to do this, as I am sure the future will come where his care is too much for family members to take on in my absence. I feel some urgency to do things that we had hoped to be able to do together, but Parkinson’s has now made impossible. This is so hard.

And to the original post - yes. I do feel cheated. I have all the responsibilities of the household and the caring for a spouse, and not even a little bit of awareness or gratitude on his part to keep me encouraged under the weight of it all. We were recently in an evaluation video appointment with a physician and my husband was saying he is depressed and just wants to die in his sleep before his condition gets worse and he loses any more dignity. It was odd because it was such an unusual brief moment of clarity and I really felt for him. But the doctor proceeded to tell him that there was no reason for him to feel that way, that he was NOT a burden, and that I was clearly happy to do all the things to care for him. I was a little stunned. I do think this situation IS a burden. Not my husband himself per se, but this disease process is a HUGE burden. And yes I am doing my best to stay positive and care for him, but to say I am HAPPY about it? That’s a bit of a stretch. I suppose I must need a lot of sanctifying to get to heaven. It’s definitely a heavy cross to bear and I didn’t appreciate her telling him it was not and also not validating his suffering as he loses his independence and dignity as a person. I guess we both feel cheated but I think that’s because the reality is that we actually are. I don’t think that is wrong to acknowledge but I know it’s not healthy to get stuck there either. Life is better when we make the most of the blessings we do have, so I try to focus on those things. He can’t travel with me anymore, but we can sit in the sun on our porch for a few minutes on nice afternoons and remember the trips we did take together and between the Vitamin D and the good memories, it helps lift both our spirits up even as he continues to decline a bit each day.