My mom has Huntington's Disease. She is currently living with me until we can find a permanent solution for her care.
When you walk into my house with your cigarette because you forgot that it was lit, I want to scream and tell you to get out.
When you ask me to light your cigarette for you, I want to snap and tell you that you shouldn't be smoking them anyway. The holes in your clothing prove it.
When you slam your coffee cup down again and again at lunch, I want to do more than sigh and remind you to be quiet while the baby is napping.
When you complain and demand to get your way, I want to send you to little man's room for a time out.
When you wake me before the sun is up or in the middle of the night to help you turn the TV on or unlock the door, I want to push you out of the bedroom.
When I have to set my son aside to help you because you can't wait, I want to cry in frustration and ignore you.
When you do things that are improper and then say you can't help it, I want to gag and show you my disgust.
When you refuse to listen in public and almost get hurt, I want to scold you and tell you that you are not in charge.
But I don't.
--
I'm linking up with Shell for Pour Your Heart Out. Thanks for giving me a space to share the Things I Can't Say.
This is touching Samantha. My mother has dementia and I know all too well some of the things you write about. May you find strength and patience. And she, a little peace from her own mind.
ReplyDeleteThank you!
DeleteI'm struggling to remind myself that this is not really her or her fault but it's hard not to become frustrated.
Samantha, my heart is aching for you. For that balance between knowing its a disease, and being angry at the burden that has been put upon you. My father has serious illness' and I am constantly driving him back and forth to the doctors office. Its hard, especially when I feel like Im not appreciated. if you ever need to talk--Im always willing to listen.
ReplyDeleteI'm sorry to hear about your father.
DeleteYou're exactly right. I feel guilty for feeling burdened and loosing my temper but I do. It's much like having a second child around the house except my son can comprehend when I tell him things.
First of all, you are such a good daughter. You are courageous and compassionate. I so admire you for posting this. You are an awesome daughter. I am completely moved by this, and very much admire you. Thank you for your honesty, and thank you for sharing.
ReplyDeleteThank you for the compliments but I'm not a saint. My sister lived with my mom for 5+ years so I'm a little embarrassed that I'm this frazzled after a month.
DeleteThis has to be so hard. You are doing so much to help her... but still have your own family to take care of, too.
ReplyDeleteShell that is exactly where I stumble. It's so hard when little man is crying and mom is screaming. It feels like I'm neglecting one and choosing the other.
DeleteWow. I teared up when I read this. I have no words... because - well - *sigh* sometimes you just need to vent. Big hugs - because it must be tough. It just must be really tough. The best you can be - is always good enough. xo
ReplyDeleteExactly! Thank you for letting me vent!
DeleteAll I can say is hang in there and things will be better in time. God is good you know.
ReplyDeleteI can only imagine how hard it is for you and your mom too. I am proud of you for doing the best you can and that is all you can do. Take one day at a time. Love your family and the rest will fall into place. I will continue to pray for all of you and keep you in my heard always. Big hugs for all. Hi to your mom. Love you so much!!!I am always here for you, if you need to talk. Daniela
ReplyDeleteI am so sorry for all the stress you are facing. This can't be easy, and you're doing an amazing thing. xoxo
ReplyDeleteOh, this is heartbreaking, Sam! Big, big internet hugs to you from me....
ReplyDeleteSounds so hard...I'm sorry that you're going through this. Your mom is blessed to have you.
ReplyDeleteWow you are a strong woman...and I'm sorry that you and your mom are having to deal with this disease. Your mom is lucky to have you!
ReplyDeleteOh this sounds so hard, Sam.
ReplyDelete(I'm so, so very sorry.)
Oh, honey, I'm so sorry. That must be such a struggle for you all. Hugs.
ReplyDeleteYou are so strong for being there. I can't imagine how tough this could be. *hugs*
ReplyDelete"But I don't."
ReplyDeleteWhat a powerful piece and closing line. Hang in there.
Wow! I can't imagine how difficult this is for you. How strong and compassionate you are!!
ReplyDeleteYour mom is really lucky to have you. I'm sorry it's so hard. I hope you're able to get a break and that the placement you find for her is wonderful.
ReplyDeletei'm SO sorry. sounds incredibly difficult.hugs.
ReplyDeleteWow, I can not even imagine how hard this is on you! When my parents took on caring for my grandfather a few years back he was unable to walk and up at all odd times, it was difficult for them. As exhausting as it was now that he is gone they treasure that time even though it was a struggle.
ReplyDeleteTammi I know that you are right - I will miss her when she's gone. Unfortunately right now I'm not able to enjoy our time together when I'm strictly a care giver.
DeleteI hope to find some assistance soon. So we can all enjoy the last of our time together.
Thank you everyone for your support! It's nice not to be judged for thinking these terrible things.
ReplyDeleteOh my heart and prayers go out to you. What a hard situation. My grandmother had a cousin who married a woman that had Huntington's in her family and it was such a big deal when her sons finally made the decision to get married and have children... later in life, because it was before genetic testing. There is also a family at the church in which I was raised, where 2 out of 3 of their children have Huntington's... so hard.
ReplyDeleteIt IS a huge deal, you're right! My sister and I have both been tested, we are both not carriers so our children have no chance of inheriting. My brother has not been tested and he is expecting. It's been a huge issue in our family. My mother is not happy with him.
DeleteOh I can't imagine how much of a toll this is taking on you. I'm so sorry. Hang in there, I know it's hard.
ReplyDeleteThis was such a touching post, I'm sorry that I'm only just now getting to it.
ReplyDeleteI remember why I starting reading your blog regularly in the first place. It was because once I discovered that you were helping to care for someone suffering from Huntington's, I knew that you were a person of true character.
Even when you are ashamed of how her disease makes you feel, please know how much I admire your courage and strength.
That is the nicest thing ever! Thank you so much for the sweet comment!
DeleteI don't know anything about this disease. But I do know that I'm so very sorry you are having to deal with it. Being a Mom to your Mom must be so difficult. I hope you continue to use us as your sounding board. No judgement just friends that are here to listen/read/help.
ReplyDelete