I try very hard to present a positive attitude to the world. I figure nobody wants to hang around or read about a Downer Debbie. Yes, I have shared my feelings about the disease but when I talk about caring for my mom I often talk about the funny things that she does or says. Hearing about the horrible things that happen upsets my family. So, I stick to the silly things, after all, they make funny status updates. Yes, that was sarcasm.
But, the majority of the time it isn't funny. It is the worst thing that I have ever undertaken. When I choose to do something, I want to do it well. So, it is humbling to fail at something so important. And, I am failing. Miserably.
How do I deal with the quicksilver mood swings? She can go from raising a fist to me in violent anger to rubbing my cheek because she loves me in a fraction of a second. She forgets and moves on just that quickly. I can't. I am still in the defensive mode. I am not ready to have my cheek rubbed. And when I don't respond positively to the cheek rubbing, she is hurt and doesn't understand the rejection. I know she is sick but I cannot stop the feelings I have on a dime.
So, part of the answer is that I am going to let it all hang out... good, bad, silly and outrageous. This blog has officially become my outlet. So, fair warning, if my words are not light enough, or fun enough to keep you reading... no hard feelings. I have enough of those already.
Monday, June 18, 2012
Thursday, June 14, 2012
A note for me...
I wrote this about a year ago and it is even more true for me today...
This has been on my mind for awhile. If I ramble, please, forgive me.
I am just so frustrated and I have to say these things or I might
burst at the seams. I am writing this for me and if I post it please
know I am okay.
Taking care of someone you love who is long-term, terminally ill
is one of the hardest jobs you will ever undertake. You are on duty
24 hours a day. 7 days a week. Your other responsibilities don't
disappear... you are still a parent,employee, friend, spouse,
bill payer, etc.
If you are lucky you have people in your life who "get it". Bosses
who tell you, "It's ok. Do what you need to do." Friends who aren't
offended that they are always the one making the effort to maintain
your friendship. Co-workers who cover for you at a moments
notice. Family members who genuinely try to help...and others who
would if they could. But many people who know you don't know that
you are a caretaker. Many who do know, have little concept of what
your life is like. Invitations cannot be accepted. Or advanced. Simple
things like your child inviting a friend over after school can no
longer occur. Eventually, the invitations stop coming. And you feel
guilt. You are not doing enough foreveryone else... THEIR lives
are being impacted because of a choice that YOU made. You have to
fit your life into the small and rare occasions when someone else
can be there for your loved one. If your immediate family is part
of the care then you juggle who gets to "go out", knowing that
"going out" means going to the grocery store. You cannot just stop
and take your kids to something as simple as the movies. And
eventually true family time is non-existent. You end up resenting
the person you love. Yes, that is part of it all. You're ashamed of the
resentment. But it is there.
And there are the people who don't "get it". They are the people
who judge.. they've taken care of a family member and it wasn't that
difficult. I read that 50% of caretakers of a terminal family member
die BEFORE their loved one from complications of stress. Well
meaning people will tell you "Don't forget to take time for you." And,
you know they mean it. And, they are right. But, taking time for you
means time taken away from someone else.
And my favorite thing that people have said to me, "Well, at least you
still have your mom. I would give anything to have mine back." I am
so sorry for their loss. Truly I am. But, you know what? I would like
to have my mom back too because I guarantee you that the person I
am taking care of is NOT my mother. She is a stranger in my
mother's body. I miss my Mom, too!
I am just so frustrated and I have to say these things or I might
burst at the seams. I am writing this for me and if I post it please
know I am okay.
Taking care of someone you love who is long-term, terminally ill
is one of the hardest jobs you will ever undertake. You are on duty
24 hours a day. 7 days a week. Your other responsibilities don't
disappear... you are still a parent,employee, friend, spouse,
bill payer, etc.
If you are lucky you have people in your life who "get it". Bosses
who tell you, "It's ok. Do what you need to do." Friends who aren't
offended that they are always the one making the effort to maintain
your friendship. Co-workers who cover for you at a moments
notice. Family members who genuinely try to help...and others who
would if they could. But many people who know you don't know that
you are a caretaker. Many who do know, have little concept of what
your life is like. Invitations cannot be accepted. Or advanced. Simple
things like your child inviting a friend over after school can no
longer occur. Eventually, the invitations stop coming. And you feel
guilt. You are not doing enough foreveryone else... THEIR lives
are being impacted because of a choice that YOU made. You have to
fit your life into the small and rare occasions when someone else
can be there for your loved one. If your immediate family is part
of the care then you juggle who gets to "go out", knowing that
"going out" means going to the grocery store. You cannot just stop
and take your kids to something as simple as the movies. And
eventually true family time is non-existent. You end up resenting
the person you love. Yes, that is part of it all. You're ashamed of the
resentment. But it is there.
And there are the people who don't "get it". They are the people
who judge.. they've taken care of a family member and it wasn't that
difficult. I read that 50% of caretakers of a terminal family member
die BEFORE their loved one from complications of stress. Well
meaning people will tell you "Don't forget to take time for you." And,
you know they mean it. And, they are right. But, taking time for you
means time taken away from someone else.
And my favorite thing that people have said to me, "Well, at least you
still have your mom. I would give anything to have mine back." I am
so sorry for their loss. Truly I am. But, you know what? I would like
to have my mom back too because I guarantee you that the person I
am taking care of is NOT my mother. She is a stranger in my
mother's body. I miss my Mom, too!
Friday, June 8, 2012
I am tired...
I am tired.
Of letting down the very people who count on me.
Of always saying the wrong things.
Of losing my temper.
Of failing the test.
I am tired.
Of getting up everyday with the best of intentions and never achieving even half of them.
Of forgetting that this is a disease and that she has no choice.
Of allowing past actions to taint today's responses.
I am tired.
Of teaching my daughters this example of compassion.
Of disappointing myself.
I am tired.
Of letting down the very people who count on me.
Of always saying the wrong things.
Of losing my temper.
Of failing the test.
I am tired.
Of getting up everyday with the best of intentions and never achieving even half of them.
Of forgetting that this is a disease and that she has no choice.
Of allowing past actions to taint today's responses.
I am tired.
Of teaching my daughters this example of compassion.
Of disappointing myself.
I am tired.
Friday, June 1, 2012
Is it my turn...
I mentioned before that one of my brothers gives me a break most weeks and takes care of my mom for a few hours. And I am grateful for the time. Every Tuesday afternoon he takes her to her favorite coffee shop. I take her several mornings a week for breakfast. One day last week I took Mom in later in the day than I usually do. I had to laugh when the waitress, whom I have never met, asked me if it was my "turn" to watch my mom. HaHa. My brother has her for 7 hours and I have her for 161, so, yes ma'am, I guess you could say that it was my turn.
Thursday, May 31, 2012
The gifts...
A friend, who is a member of an online group that I belong to, is also a caretaker of a dementia patient. We commented on each other's posts last night about some of the things that our family member does. We started laughing and were just so silly for over an hour. I can honestly say that I haven't laughed that hard in a very long while.
In the middle of the hilarity we threw out the idea that what if these situations really aren't that funny? What if the stress of "living through it" makes a horrible situation just seem funny? Does stress really gift you with that release valve? What if seeing someone poop YOUR stolen panties doesn't cause the normal person to break out into fits of giggles (after the fact, of course)? How wondrous is that? That we are given an escape of an otherwise intolerable situation with the gift of laughter is nothing short of amazing. And another amazing gift? Just being able to talk to someone else who understands, someone who gets it and knows that you aren't crazy and that you are not a hero. Thanks, Jennifer.
In the middle of the hilarity we threw out the idea that what if these situations really aren't that funny? What if the stress of "living through it" makes a horrible situation just seem funny? Does stress really gift you with that release valve? What if seeing someone poop YOUR stolen panties doesn't cause the normal person to break out into fits of giggles (after the fact, of course)? How wondrous is that? That we are given an escape of an otherwise intolerable situation with the gift of laughter is nothing short of amazing. And another amazing gift? Just being able to talk to someone else who understands, someone who gets it and knows that you aren't crazy and that you are not a hero. Thanks, Jennifer.
Monday, May 14, 2012
Walk a mile in my shoes, if you can find them...
Most people who are not caretakers do NOT understand how I can possibly laugh at some of my mother's actions. Some go so far as to lecture me that she can't help her actions. I, of all people, get that. Some days it is the laughter that allows my family and I to remain sane. I hope you can see the humor.
Today I was using the Voice to Text feature on my phone. Everytime I said something into the phone, my mom yelled an answer to what she thought she heard.
Me: I had to get the brakes fixed today.
Mom: No thank you. I already ate. I think.
Me: They wanted $500!
Mom: I am not hollering! (as she yelled from across the room).
Me: The shop thinks I'm a stupid woman.
Mom: No, I don't feel like vacuuming.
I buy myself a lot of new shoes, not because I want them, because she steals them and hides them from me.
My favorite things are the collections. She has collections that she doesn't know she has. I have to sneak into her room daily and remove the pieces of bread that she has hidden. She goes to the kitchen for a glass of water and hides the bread in her pockets. Oh, and she loves used straws and lids. Any and all lids... even if they are still being used, she just removes them and hides them.
Last Summer she found the box of bomb pops...
Apparently, she didn't like them.
Today I was using the Voice to Text feature on my phone. Everytime I said something into the phone, my mom yelled an answer to what she thought she heard.
Me: I had to get the brakes fixed today.
Mom: No thank you. I already ate. I think.
Me: They wanted $500!
Mom: I am not hollering! (as she yelled from across the room).
Me: The shop thinks I'm a stupid woman.
Mom: No, I don't feel like vacuuming.
I buy myself a lot of new shoes, not because I want them, because she steals them and hides them from me.
My favorite things are the collections. She has collections that she doesn't know she has. I have to sneak into her room daily and remove the pieces of bread that she has hidden. She goes to the kitchen for a glass of water and hides the bread in her pockets. Oh, and she loves used straws and lids. Any and all lids... even if they are still being used, she just removes them and hides them.
Last Summer she found the box of bomb pops...
Apparently, she didn't like them.
Friday, April 6, 2012
Whippeedoodoo crazy...
If any of you wonder why I'm a little on the whippeedoodoo crazy side... here's a peek into our typical dinner conversation:
17 yr old daughter: The clouds are moving.
11 yr old daughter: The wind controls the clouds.
17 yr old: Who do you think controls the wind?
Me: They call the wind Mariah.
11 yr old : Isn't that a star?
Me: What?
Grandma: What day is it?
Me: No, it's Tuesday.
11 yr old: Isn't there a star named that?
Me: Tuesday?
11 yr old: Noooo.
Me: Mariah?
11 yr old: Yea, the Mariah Belt or something?
Me: The Orion Belt?
11 yr old : Yes. That. Isn't it about a wolf?
Me: The Orion Belt is about a wolf?
11 yr old : I should know because I went to the plantation.
17 yr old: Did you pick bananas?
Grandma: So tomorrow is Friday, right?
17 yr old daughter: The clouds are moving.
11 yr old daughter: The wind controls the clouds.
17 yr old: Who do you think controls the wind?
Me: They call the wind Mariah.
11 yr old : Isn't that a star?
Me: What?
Grandma: What day is it?
Me: No, it's Tuesday.
11 yr old: Isn't there a star named that?
Me: Tuesday?
11 yr old: Noooo.
Me: Mariah?
11 yr old: Yea, the Mariah Belt or something?
Me: The Orion Belt?
11 yr old : Yes. That. Isn't it about a wolf?
Me: The Orion Belt is about a wolf?
11 yr old : I should know because I went to the plantation.
17 yr old: Did you pick bananas?
Grandma: So tomorrow is Friday, right?
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