I got a message today from a concerned party. They wanted to be sure that I understand that getting frustrated with my mother is not the answer. I have to practice patience and love with her. It is NEVER okay for me to make her cry or to find humor in her struggles. That is just cruel and shows how selfish I am.
Maybe ...
I would love to be a jerk and ask you about your experience with a loved one suffering dementia. But I actually know you pretty well and know you have none. So there's that.
There are a lot of opportunities for me to feel like I am horrible person during this time. I pretty much question the things I say and do ALL the time. I definitely never want to make anything worse or harder for my mother and so I constantly find myself wanting to be sure I do and the right thing. My mother does not read this blog, she knows about it but she doesn't read it and she doesn't really want to. It's my place to process, vent and deal and she's okay with that. I wish you were too.
When I vent about some of the awesome things that people say when they probably just shouldn't say anything I always hear the same thing. People have good intentions. I'm pretty doubtful on this one as the message definitely went on a lot further, but I'm going to practice patience and love here and give you the benefit of the doubt. However, I want you to know and understand something very clearly. I love my mother. My days pretty much revolve around her. Trying to find a balance between her and my one year old leave me ZERO time for myself and I'm okay with that. I've been known to be a selfish, bratty person but I would say that one thing I am not in this battle right now is selfish. My life is no longer my own... and until you spend a day in my shoes you really don't get to call me selfish. Or cruel ... but that's just ludicrous, so I'm not even going to address it.
I'm sure you had my mom's best interests at heart, I'm trying really hard to believe that. One thing I have learned from all of this is that you learn who is fighting in your corner and who just wants to talk about your fight. I feel certain I know which category you fit into.
This disease is hard. One minute a person can be happy and laughing and in an instant they can be angry or sad. You just never know. If I had the key to what caused the changes, I definitely wouldn't be in the financial shape I'm in. My mom cries. I have a dear friend who's spouse is suffering from this crap and he turns to anger. You walk on eggshells on the bad days and on the good days you are constantly waiting for the switch to flip. It's definitely no walk in the park.
So with all of that out there ... please know that I am doing everything within my power to help my mother. I'm fighting with doctors, insurance companies, retirement boards, insurance boards, and social security agents on a daily basis. I'm making sure she has everything she needs to be comfortable each day, even if that changes from day to day. I'm making sure she's not sitting at home alone depressed. I'm with her everyday. Honestly, I have no idea how to walk this road. There is no book that I've found (and trust me I've gotten plenty of recommendations) that has given me every step to take. But I'm trying. One day at a time, I'm trying. I'm learning and I don't get it right every day. But each day is a new day to start over and try again.
I posted this on my FaceBook this morning but I want to post it here again. This song has rocked my world today. Not sure how this is the first time I heard it, but it is good. Here's my favorite line ...
You've just got to believe the story is so far from over.
No this is not how I imagined my life would be. But if this is what He needs us to do, we will do it. I will walk beside my mother and when she cannot walk alone I will be there to carry her. For the most part you guys give me the strength I need to do that. Thank you for that. For those that think I'm doing this wrong remember ...
Our days are happier when we give people a bit of our heart rather than a piece of our mind.
P.S. - For all my other mothers that read this...I am okay. One person's negativity is not enough to affect me right now. Look at that, I'm getting tough skin :)!
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