I'm going to a wedding on Saturday and by all rights I should be looking forward to it. My nephew is getting married and it's the first time I'll be getting out of the house for a social event in a long time. But, I'm struggling to get my act together, my son's pants aren't hemmed yet, my hair isn't cut and then there's Mom. Mom doesn't want to go at all, doesn't have a dress, won't get her hair done, says she doesn't know these people and she's right. Most days she knows me, but that's only because I live with her, she doesn't always know who I am to her, not for the past year, anyway, some days we're sisters, some I'm her daughter and some days I'm not sure. I just try to make her happy, but nothing much does that anymore.
Even when you know that the Mom you knew and grew up with will never be that Mom again, that the dementia that stole her away so cruelly and continues to do so is something that you have to face and deal with, it never stops you from wishing it were not so, from grieving each precious piece of her lost. And she's in pretty good physical health, this will continue, it will get worse, much worse. I have to be stronger than I think I know how to be.
She wants to hide in her room most of the time and she clings to my Dad and asks where he is over and over each time he leaves the house for anything other than work. He works the overnight shift and she's scared without him here. It used to be a comfort to her to know I am here, but I don't know if that's true anymore. She used to knock on my bedroom door if she had trouble with her teevee (she forgets how to use the remote) but now she just gets up and wanders. I want to set up a DVD so that she can have The Golden Girls on throughout the night, that's one thing she still really enjoys.
As we went through the holidays and for the first time she did not come downstairs to watch the boys open their presents, came home from my sister's and took to her bed and would not eat Christmas dinner with us, looked at something on her plate on New Year's Day and told us she never ate that, I would think--this is happening so fast, this is too much, I cannot bear it, but I must. I promised her, you see. I promised I would always take care of her, no matter what.
So, we have Saturday and a fancy wedding to get through, Mommy. I know you're scared and that you don't really want to, but we'll get through it and afterwards we can get back to whatever the hell normal is now. Most of all, I know you are struggling and scared, so am I , Mom. I love you.
Comments
So..
that's where I am.
That's beautifully written, triv33.
I'm so sorry that this abominable disease is taking away our loved ones piece by piece.
You're a wonderful daughter, and don't ever forget that.
I hope you have a few hours that you can enjoy yourself at the wedding. You certainly deserve it.
And remember: Take comfortable shoes, put them in your coat pockets when you check your coat... just in case. :)
my feet
are so rough I wonder if they will shred my stockings...
my heart is breaking for you and your family
this is so painful and you are a wonderful person; it is so hard to watch someone you love lose themself and to not have her know you and the people that love her while knowing that it will just get worse and there is nothing that you can do to make it better but you cannot just ever walk away ... it is good that your sister gives you a break, as this is so hard to have to deal with on a daily basis. When my mother died, I was so grateful that she was herself to the end and she could care for herself; I offered to take her in, but she wouldn't hear of it, she had friends and a life and I am grateful that she was able to enjoy it until the end of her life. Am so sorry that your mom was not lucky like my mom was. Thank you for sharing this, it must have been so hard, sending love and some strength to a priceless human being!
Wow.
You're an angel, triv33.
we already knew that triv33
is a wonderful person, we just keep on finding out what the term wonderful really means!
I assure you I am not.
I think most people in my position do the same. Most do their best.
I hope that you are right, but I am afraid
that you are not. There are times that I worry that those ties that bind us are being broken down by how we live, by how we are told that it is appropriate to act, by our lack of understanding of empathy and obligations between human beings. Those things that make us human are rejected by the societies in which we live, you are very special and know what love means. It is rare these days.
Most people
would hope to do the same. But sadly, that isn't always the case.
I wholeheartedly disagree, and I can prove it.
I don't mean to be arguing, but NO, most people in your position wouldn't do the same. Surely many people would, but in my little circle, NO, it's not most.
You are special. This isn't like helping an elderly person across the street, which I would love to believe that most people would do, this is altering your life completely in order to love and care for a loved one. That matters. That's different to a whole new degree.
So many nights when I was sick and alone
when I lived in Quakertown she was there for me. Sometimes it felt like all I had to hold onto was my Mom's voice on that phone. I was scared and sick and half out of my mind and nobody knew what to do with me, but she would talk to me for hours.
No words, just good vibes being sent your way.
~~~
virtual hugs, friend...
Thank you, triv, for everything all the time
I hope you know I love you so much, (as much as an internet friend who could be a teenage boy can be loved). This piece contains many of the aspects of you that make me love you, but the salient one, the most important one, is the honest presence.
For a while, we were in a group that met monthly with the aim of practicing the dialog method of Bohm. My wife pointed out to me an invaluable insight. She noticed that we could spend the night discussing, talking in our heads, arguing or agreeing and whatnot, but that the instant a person began speaking honestly, from that emotional place that we all inhabit, the room would change, people would perk up and stop trying to be disciplined about listening instead of talking all they time, people would drop into themselves in resonance with the speaker and feel the same things the speaker felt. The listening itself becomes powerful. This piece is one of those experiences. Even when the subject is painful, it is beautiful to enjoy empathy in this life. Thanks, triv.
you are an angel triv!...
with a heart of gold. wishing you strength with your ma. that will be me at some point down the road...
oh triv
what a painful story. I'm so sorry. To lose someone who is still with you almost takes away the ability to grieve. At the same time, it makes every day one full of grief without feeling their is time to do the grieving.
What an incredible spirit you have.
sorry you have to bear this burden
while it's probably no comfort during this time, you can draw some peace from the fact that you're taking care of her. no one would take care of her and love her the way you do. God bless, you.
We called it alzheimers, but it was likely tiny strokes.
By the end, my mother thought I was her brother almost all the time. I'll tell you some things I did. I stopped correcting her altogether except in those rare cases when the facts mattered. I would try to figure out where she thought she was and what she thought she was doing and, as best as i could, play my part. My mother was a pleasant person by nature, and we had many pleasant discussions this way. I think it was an escape for me, too, but still painful, of course, and poignant when I realized how much of her life I did not know.
I wonder if there is any way you could get a video of her husband speaking unselfconsciously, then play it in her room when he is not there. She may not be that out of it yet, but I found my mother could be entertained for a long time with 3 photographs, looking through them in circular order completely forgetting she had just seen them. In short, if you set aside the agonizing tragedy of them not being in this world with us, then you can find ways to make their world pleasant. I never was sure, but it is my guess that feelings carry over more than thoughts, so that an afternoon of pleasant feelings can increase the likelihood of relaxed thoughts at evening. Otherwise, I started to feel my time was wasted when she wouldn't even remember I had been there. I hope the emotions lasted. Jodi Foster's speech address this wish very affectingly with "I love you. I love you. I love you."
I can never repay my sister for living with my mother, although it was beneficial to her as well. It allowed me to keep my life relatively uncomplicated, because I lived far away.
I wish there were more to say. What can you say?
I hope that wedding is a blast, with good food and good music.
I already do that to some extent and I
coach my Dad all the time, there is NO then but her then, Dad. If she says she doesn't know--then she doesn't, don't say "remember?" or "you used to know" because then she thinks--did I? Did I? I don't remember...and that scares her. The best we can do is play along, help her out and keep her happy. My Mom was fun and she still likes to laugh, I try to get a laugh out of her every day. If anyone brings up our last vacation the one thing she remembers is how we sat on the deck and laughed.
You're a mentschette Triv.
I went through this with my aunt a few years back. That was tough enough; to watch your mom slip away is a million times harder.
Nothing I can say to make it better
but thank you for sharing these painful moments, triv33. We are with you as is the Mother you know whom is still there somewhere whether it's within you or hopefully still somewhere within her despite Alzheimer's. Fucking sucks they haven;t found the cure for it and when they do we won't be able to afford it like everything else.
I do not know what is worse.
To lose someone suddenly when one is young - like my father. In a few days when one is much older - like my mother. Or torturously slow, like you with your mother.
I feel for you but also for you mother who really does not understand what is happening to her. For her this is also torture of another kind.
It all sucks.
thanks triv for sharing your strength with us
You are a good person, yes.
so sorry, triv
What I remember is being asked how pets were doing that had died over five years ago. Have a good time at the wedding this weekend....