Angry at optimists

Brez

Anyone else get super upset when caregivers tell you how great your loved one is doing because they ate? Oh, Dad’s doing so well. He ate all his lunch.

Look. I know you don’t know my dad pre-late stage Alzheimer’s. But MY DAD, the person, not the body, is not doing great. And I find it so condescending when people tell me he is.

And it’s not like I don’t get it. You’re trying to be positive. Trying to find the good in all the shit. I get it. But I’m also an adult. Don’t tell me Santa’s coming when I see the presents hiding in your trunk. I’m not an idiot.

What I am is a grieving daughter who misses the person that used to be my father. The guy that would slide a quick joke in and then leave the room just as you started laughing. The guy who roasted the tastiest chicken you’ll ever eat. The guy who used to warm my underwear on a space heater on cold mornings so I wasn’t too cold. The guy who bought me hubcap after hubcap because I couldn’t stop hitting the curb. The guy who talked me down from anxiety attacks, and made me feel loved and accepted always. As it turns out, that person was more than just an eater.

So while I understand your intentions, kindly f*** off.

mabelgirl

I’m sorry for the grief you are feeling. This long good bye sucks big time. I think it’s important that we don’t let our anger extinguish all the brightness of life, no matter how small a flicker it is. One day that flicker will be totally gone. Prayers for peace and acceptance.

psg712

I hear you, Brez. I experience this anger not so much with my mom's caregivers as with family and friends who try to explain away her deficits and convince me that she's "still in there". They truly don't perceive (and don't want to acknowledge) the damage the disease has done to the person she once was.

Anger is grief energized. Channeling that energy to bring our best care to our beloved parent while witnessing their slow deconstruction is a huge challenge, but worth the fight. We are with you in the struggle!

Rob's Daughter

I can relate with you Brez. Both of my parents are in AL and on the dementia bus. My Dad is farther on journey but by mom is catching up quickly. It sucks.

Hospice calls me with updates and all I hear is that "we had such a lovely visit". I'm glad they come for company, honestly I am… but when I saw my Mom this week she told me she walked from home to AL. (We are talking a 30 minute car ride - so no, that didn't happen). Or she speaks about her Mom in present tense.

I pray we both find peace.

Megzzzz2318

I can relate to this. It is so frustrating and so invalidating. Especially when people come to see my mom and don’t know the effort we and she puts in to help her be on her best…and then they don’t see the toll it takes on her the days after because she was putting so much effort into conversing/keeping up.You are not alone.

Brez

https://alzconnected.org/discussion/comment/228337#Comment_228337

The “he’s still in there” trope is so tough. Yeah, maybe parts of him are there, but I’m sorry, that’s not good enough for me. I want all of him. Not the phantom glimmer of something that could be recognition. Or, it could just be a smile because I’m smiling at him. Who knows? Even having to question it is heart breaking.

I wish there were an easier answer. But it’s just waiting for an end and watching it get worse, not better.

harshedbuzz

@Brez

It seems like there are two kinds of people in terms of processing the ambiguous losses associated with a LO who has dementia. Some folks clearly see their LO as "still in there" and the others as "Elvis has left the building". I don't think one outlook is necessarily better or healthier than the other. You feel what you feel.

I think this is similar to when the well-meaning folks who say complimentary things about your PWD because they feel say something nice or positive. But when it lands on your ears as a caregiver, it feels dismissive as if you are overstating the amount of physical and emotional effort it takes to prepare a LO for a visit. Grrr.

I've often wondered why different people experienced this loss so differently. Are spousal caregivers more inclined to see glimmers of their LO? Do adult children feel the parent that once cared for them is now an imposter? Or is it more a function of how the PWD presents?

When my dad had dementia, I also had 2 aunts and the mom of a dear friend in the middle and late stages of dementia as well. I was one of those people who felt that the essence of the PWD was still there. My dad's and aunts' personalities kind of amplified in dementia. Dad had some mental health issues (psych said maybe bi-polar but I wonder if it was more than that); I'd never been a favorite but as he lost his social filter, others saw just how mean he could be. My favorite auntie remained polite, kind and good natured through the bitter end. Her sister, meanwhile, took bitterness and trouble-making to new heights.

That said, my friend felt bereft at the loss of her once dynamic mom. She took wonderful care of her mom at home at great personal inconvenience until the end. She gave up a job she enjoyed, had a house built to give mom a suite of rooms and remained there for 2 years when her husband had to transfer for a work project. At a lunch we shared one afternoon she admitted that "the lady who lives with me is a nice enough little old lady, but she's not my mom". My heart broke for her.

HB

psg712

Good description HB. I do sometimes see a quick flash of some aspect of my mom's former feisty personality, but it is brief. Then the passive and befuddled PWD returns and is predominant. She used to be so smart and insightful. That part is gone. It's difficult to describe to friends/family who ask questions about what she can still remember. To me, memory is just a surface symptom of the deconstruction of the person she was. But I try to focus on the fact that she still appears to enjoy our time together.

Brez

https://alzconnected.org/discussion/comment/228471#Comment_228471

I agree with all of this. So many factors go into how we respond. Who the person was, the personality of the caregiver, culture, all of it. We joke in my family that the Irish are seen as these jovial people, but we’re actually quite curmudgeon-y. If Dad were able to communicate, and he heard someone talk about how good he’s doing for eating, he’d roll his eyes and walk out of the room. No time for nonsense.

I think the part that gets me is the expected social graces we give others. It hurts me when people trivialize how much loss there’s been (Dad is incontinent, can’t walk, barely talks, can’t feed himself, sleeps a lot, the works). But rather than me saying, I know your intention is to keep things positive but when you say blah it makes me feel blah blah blah, I just smile so they don’t feel badly for making me feel badly. Same thing happened when I was going through miscarriages. People see a woman of my age and would ask, when’s it your turn to become a mom, not knowing I’m losing pregnancy after pregnancy, and again, i just smiled so as not to hurt them. Meanwhile, I’m dying inside.

I really appreciate all the comments. Grief is the absolute pits. And I get we need to process loss in whatever way we do. But I don’t have to like it.

psg712

Hugs for you, Brez. I too find myself trying to soften the situation for others even as their unrealistically positive view on mom's situation makes me feel alone. And I had a similar experience with miscarriage too. That's why having people who get it, like the ones on this forum, is such a gift.