anger over being a caretaker, caregiver, caretaker, death, dementia, dementia care, dementia care facility, dementia ward, father, FLD, frontal lobe dementia, frontotemporal dementia, FTD, memory care
Last night was the 2nd time since my dad was diagnosed with dementia that I truly got mad at him. It’s not even remotely his fault, but I am angry. So goddamn angry.
The first time, I was home alone with him one night during the year that S and I lived with my parents to help care for him. My mom and S were out of town so I was home alone with him. It was time for bed so I sent Dad upstairs thinking he could get himself to bed. Not long after he’d gone up, he came downstairs and knocked on my door and, in a very cranky voice, said he couldn’t sleep because there was a light on making the bedroom too bright. I figured it was a light from the back porch, so I went up to double check and saw that it was still on. Turned it off and sent him back upstairs again. A few minutes later he came down again and irately told me that I hadn’t solved the problem. I had to get up early the next day, and I was exhausted from having watched him on my own the last couple days, so I told him that the light was already off and he needed to just go to bed. And then he told me to fuck myself. My father, who had been my best friend, who had never cursed at me my entire life, told me to fuck myself. That’s when I just lost it. I screamed at him. Just. Plain. Screamed. I was so angry at how he’d upended my entire life and now he was telling me to fuck myself? I’d moved in to care for him, leaving behind my house and friends in FL. I had no life in VA now that I lived with him because he constantly needed watching. I stormed upstairs, pretty much dragging him behind me to prove that the fucking light was fucking off fucking fuck fuck fuck. When we got to his bedroom, there was indeed a light still on blazing through the window. At some point that day, he had turned a light on from a different porch and his room was ridiculously bright and there was no way he could have slept like that. I felt horrible. It was not his fault. The cursing wasn’t even his fault. It was the disease. I haven’t been mad at him since.
Last night, I got mad again. Really mad. Raging mad. And once again, it’s not his fault. The facility where he lives has decided that he absolutely must be moved to the skilled nursing facility that we hate. We had enrolled him in hospice because someone suggested that if they had the extra help from them, he could stay put. So we did that. But apparently, that’s not enough. They’re “not licensed for full care.” Of course, no one mentioned that was an issue when we moved him in. No one said he wouldn’t be able to age and die in place. They kind of ambushed my mom at the care planning meeting today with that lovely little tidbit. She called me afterward, sobbing. So now we either have to move him to this dark, depressing, awful facility linked to where he is now, or go searching again for a different facility where visiting him won’t be so terrible. And spend the money and the time to have him moved. And his long term care insurance has run out, so it will all be out-of-pocket. And the thought of him being more disoriented and possibly scared and unable to tell us he’s scared breaks my fucking heart. And I’m tired of my fucking heart being fucking broken. I’m tired of being a caretaker. I’m tired of fighting to get him the care he deserves. I’m tired of having him not recognize me or what I’m going through. I’m tired of trying to choose the least awful option for him. I’m tired of walking the line between getting him great care and extending his life unnecessarily. I’m tired of caring. I’m tired of feeling like I’ve got an open wound that no one can see, and still having to put on a happy face at work and pretending like I’m not so utterly exhausted by grieving for the last 6 years that I can barely think straight. I’m tired of watching him suck the joy out of my mom’s life. I’m tired of having to watch her battle everyone around him just to keep him safe and whatever version of happy he can be. I feel so horribly, horribly guilty for feeling like I just want this over. No more. We’ve been through enough. I know it’s selfish, but right now, I don’t even care. I know I’ll regret feeling this way once he’s really gone. I know I’ll wish I had him back regardless of his condition. But I don’t care right now. I just want this to go away so I can move on. I’m tired of one crisis after another.
I sat on the bathroom floor sobbing last night and wishing my dad would choke on some food and die. Or wishing a nurse would accidentally give him too many meds and his body would finally call it quits. I’m so fucking mad at him for putting us through this. I mean, I’m mad at the disease, but it’s manifesting through him, and therefore he’s the target of my wrath right now. I feel so guilty writing this, but I need to get it out of me. And I’m betting there are plenty of other caretakers who’ve felt this way. So I’m just going to say it.
I’m angry at him for getting this disease. I’m mad at him for putting us through this, even while I know he would never in a million years have wanted this to happen to any of us. I’m just so fucking mad. So mad. So. Mad.
Joy Johnston said:
So sorry you are going through all of this. Unfortunately, I’ve heard about this “bait and switch” before but in most cases that I know of it doesn’t happen so quickly.
Don’t feel guilty about venting, it’s good to release these emotions you are feeling, and you are in a forum where other caregivers understand exactly what you are going through.
Thanks Joy. Knowing people understand really does help.
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Deborah Moss said:
I agree with Joy – you are human. These experiences are TOUGH so allow yourself the freedom to be angry without shame.
Better “out than in”. Writing, creative practises, exercise (even if it’s at home because that is where you have to be) and talking to others will help.
Try to do one thing a day that is for yourself – however small – something to focus on rather than the Goliath illness.
I hope you feel a bit brighter today.
You are a wonderful daughter.
Thank you for your kind words, Deborah.
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Deborah Moss said:
You are welcome Emily. I’ve been there as a daughter – not with the same illness as your father’s but something that was extremely demanding emotionally and physically. Sending good thoughts to you! Take care, Deborah
cassie @ primitive & proper said:
emily, i am so sorry you are going through this, but i know that in writing how you feel not only does it help to get it out of you, but you are putting into words what so many are feeling and can’t get out or they are ashamed to get out. and how you are feeling is nothing to be ashamed of. when emmy was born i didn’t fall in love with her like i did with sawyer right away and i kept it to myself, the guilt and feelings (or lack thereof) eating away at me. it took a few days and i got there, but it took time and i felt like a terrible and undeserving mother. years later i was talking to another mom about postpartum stuff and what she went through and finally talked about how i had felt and it was a relief… and i learned that it was normal. our society stifles us by telling us we shouldn’t feel a certain way or we should feel this way. just know that you are right to feel your feelings…. i know this sounds so babbly, but i swear that there is a point in there.
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You weren’t babbly at all. That makes perfect sense. And thank you.
Marianne Wysocki said:
(((( EM! )))) Thanks for your honesty. SO many people in your situation feel this way. And are afraid to voice it. I think you have helped many people with this post. It validates. I can’t even remotely know what you are going through. Just know I care and I send prayers and I understand to the best of my ability. ❤ Marianne
Thanks, MAW. It helps to get it out, and if it helps other people, well, then BONUS!
Justin Pollock said:
Emily, I hear you and am listening. You care and love so deeply for your father. That is clear to those who hear, read, and feel your words. It is clear that that love burts at times. I hear that.
Thanks, Justin. Feeling a little raw, but definitely a little better today. All the support I’ve gotten has been incredible.
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