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Is She Suffering?
NoSiblings
Posted: Sunday, August 25, 2019 8:28 AM
Joined: 9/3/2016
Posts: 215


My mom is in Stage 7, in a skilled nursing home, and has been on hospice 6 weeks now. She is 100% dependent for everything. She is steadily losing weight. She can only sit when placed in a Brody chair with that at a 45 degree angle. She hasn't been able to walk even a single step for over a year, but she can still talk. I don't know if she can smile or not. It's been a very, very long time since I have seen a smile. About 2 or 3 weeks ago hospice stopped both her Aricept and her Namenda. Once that was stopped she is a little more alert. She talks a little bit more (answering never initiating), but mostly she still just sits or lays with her eyes closed. (My mom is also blind.) She does still always know me. I don't know that she could tell you my name if asked, or if she could tell you that I am her daughter but every day when I am there she recognizes my voice and seems to know that I "belong to her." When I leave each day and tell her I love her, she always tells me she loves me too.

My question is about whether or not she is suffering? She has zero quality of life left. She just lies in bed or semi-lies in her Brody chair. Probably at least 85% of the time her eyes are closed. She does not complain of any pain. If I ask if she is in any pain she always says no. But is she suffering and in misery or does she just look that way? I am suffering and in misery watching her, but is she? Does she realize that things are so bad or is so much of her mind gone that she doesn't realize how different things are from how they used to be? Am I the one in misery while she is just "existing"? Thinking that she is in misery and there is nothing I can do to make things any better for is agony for me, but is it for her? What do you think? Does she realize how bad everything is?


Katy sue
Posted: Sunday, August 25, 2019 9:12 AM
Joined: 9/24/2016
Posts: 307


Probably not, NoSiblings. It is truly gut wrenching to see this quality of life. My DH is mid stage 7 and has such very low quality of life also. I wonder the same things about him, how much he comprehends or enjoys or if he experiences pain. He is still walking, though very scary as Lewey Bodies is taking a strong hold on him. His speech is very compromised. Absolutely nothing interests him except wandering around the halls. I feel like he is a caged animal. He is 63.

I think your mom is in good hands with hospice as they help her to ease into transition. At this point in end stages, the PWD has no comprehension left. What is still there is emotion. So that is why she responds to your touch, smell, and voice. Just like a baby. She was there for you as a newborn. Now she is so fortunate that you are there for her. Stay strong. 

 


SelEtPoivre
Posted: Sunday, August 25, 2019 10:05 AM
Joined: 3/8/2018
Posts: 801


 (she’s been in MC nearly a year, and is blind, too)

Yes, her life is very different now vs last year vs pre-dementia. And I have to re-frame “quality if life” based on the “now”: she’s clean, sleeps ok, eats well (with more assistance now). She knows me by name and as her daughter.

Most of the time, my mom is not agitated or in distress. (Yes, she’ll fuss when the staff want her to do something she doesn’t want to do) She is usually not aware of where she is: sometimes she thinks she’s at home, sometimes at the resort we always travelled to at Thanksgiving. Recently it’s been living somewhere in NYC. It’s always pleasant thoughts. She often thinks my dad is still alive and “at work”. She can sometimes pull moderate- and longterm memories out that astonish me

Wherever she’s “being” inside her head, if she’s calm, and talks positively about it, I’ve accepted that this is “good”. 

I agree that we are the ones that are miserable, being aware of the changes and loss. I can have a “good day” visiting mom, and yet sit in the car afterwards tearing up, saying “my poor mom”


NoSiblings
Posted: Sunday, August 25, 2019 1:59 PM
Joined: 9/3/2016
Posts: 215


Thank you so much Katy Sue and SelEtPovire! I so hope you are right. It just breaks my heart to see her like this, and sometimes I feel like I can not stand another minute of this waiting on the inevitable. I'm sure most of us feel that way far more often than we'd like to admit. I know I feel that way far more often than it is healthy for me.

I cared for both my mom and my dad in my home for six years, and then it reached the point that there was no choice but the nursing home as I just couldn't meet their needs by myself any longer. Then my father (no dementia) passed away in November, and so now it's just my mom. I visit with her and then I cry all the way home. I go to bed thinking about her, and wake up thinking about her. That's not healthy, and my dear husband is an absolute saint as I can obsess over this and it's not fair to him. Yet, I don't know how to let go. I know I can't make her better. I know there is nothing whatsoever I can do to make even a tiny change in her circumstances. I know she is in the best place possible where she is being well cared for. Yet I agonize over whether she is in misery or not. So I pray that you are right, and that she is not. That she is just existing now, but not really recognizing sadness or despair. And if I am being totally honest, I pray that God will take her easily and mercifully sooner rather than later because no one should have to exist like that. And no one should have to watch someone they love exist that way indefinitely. At 88 my mom deserves to be released from this. I am a person of faith, I was raised in a home filled with faith, and yet this is shaking my faith to its very core.


DEMENTIASUPPORT
Posted: Sunday, August 25, 2019 2:48 PM
Joined: 8/22/2019
Posts: 23


I feel your pain. I'm going through the same thing with my mom. Everything you said, I feel the same way. I don't want her to suffer and also wish she would go. This is no way to live, just existing. No quality of life. I too leave the care home crying all the way home. Although I have to say reading other peoples stories on this website is helping. I just joined this week and can see so many other people going through the same agony. It did help when I went to see her yesterday and held her hand, just being present in the moment. That's all you can do.

 


SelEtPoivre
Posted: Sunday, August 25, 2019 2:51 PM
Joined: 3/8/2018
Posts: 801


It sounds like you are double-grieving the loss of your dad, and the decline/loss of your mom. Twice the sadness at the same time

If you haven’t already, please look into seeing a therapist, one who has specific skills in grief therapy. It will give you a safe space to let out all the sadness you’ve been carrying around


NoSiblings
Posted: Sunday, August 25, 2019 5:25 PM
Joined: 9/3/2016
Posts: 215


Thank you. I appreciate all of your responses.