Feeling cheated

@cyds I get that, I also think of the future and traveling to visit my friends in the UK etc I just hope I am still able to do it. We have to look forward to something special or we become non existence just going from one day to the next. It will be hard though doing it on my own without my husband if that became what the future holds.

@lkbous I am so glad to hear that I thought I was on my own because I never knew what to expect it’s reassuring to hear the same type of things? I’m wondering at what stage of dementia this is mild or medium and what would be the next steps to take? It’s tiring to be 10 steps ahead all the time I can never leave anything out because I’ll never know where it will end up? I don’t mean to take it lightly about what you said, but I totally understand .

@carolreid I understand where you’re coming from. I have all of the same feelings. I am not a saint and I am not able to fake being a saint. We get this disease thrown into our lives and feel like we’re expected to be stoic, pull the pieces together and be a wonderful example of the perfect caregiver. Not everyone is cut from that cloth. My husband likes to try and turn the tables on me. He comes to me all concerned and says “Are you alright? You spend so much time in your office all day and you’re so mad all the time”. I’m trying to keep my head above water with all of my new responsibilities, I’m so overwhelmed and I can’t even turn to him for condolences. I also set myself apart to avoid the constant announcements, narrations and surmising all day.
I’m just rambling now…. But you get the gist.

@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.

Here’s more.

I know women who appear to have been so loving and kind as their husbands went through the process of dementia. Of course, I can't know what was really going on with them. I do not feel loving and kind. I feel crabby, angry even, and exasperated much of the time. I'm getting frown lines. Most of us have probably heard the story of the man who visits his wife every day in memory care even though she doesn't know who he is. He explains that's okay because he knows who she is. That probably won't be me, but who knows. Have you read the"Thursday Murder Club" series? Elizabeth is so patient with her husband Steven as he slips into dementia. That isn't me. We've been married for 58 years and still I can't rise up to that. I don't like myself. Is there a question here? No, I'm just venting too. But it does help to know we aren't the only ones.

@jeanadair123
Try out the respite care. Your spouse will probably not be too keen at first but will adjust.
YOU need respite for you.

@jeanadair123
Your post couldn’t have been written by me, almost word for word. If knowing there’s someone out there that feels your pain and can tell you you’re not alon, then my reply here will have one it jib. All we can do is take bits an pieces of advice that these wonderful people give us and take it one day at a time. I’ll send a mental hello every single morning to you..we are in this together and we will come out in top. Obviously you’re strong like me, and even though we’re worn to the bone at end of day, We need to take pleasure in any little activity or diversion whenever we can without one ounce of guilt and tell ourselves it could be worse. And in the end, we will never feel guilty for not long the right thing.