pdcraig
Distinguished member
- Joined
- Mar 2, 2013
- Messages
- 101
- Reason
- Lost a loved one
- Diagnosis
- 09/2012
- Country
- CA
- State
- ontario
- City
- oshawa
Hi everyone, been a long time since I've posted. Long overdue for a bit of a rant.
Things have been pretty chaotic for the last couple of months. If it isn't something at work, it' something with my PALS or something with the care facility. Thankfully the home front is relatively calm, only my neighbour complaining about the state of my lawn this year. In all fairness, it's an mess. Do I care? Not a bit. I'm never home to see it. Sorry.
We've just passed the 4 year mark at the beginning of September. For what ever reason, I'm getting the " you can't put your life on hold" and the "you need to take care of yourself" speech a lot these days. I've started to get a bit snappy with people. I find my tolerance level getting lower and lower.
What plans do you think I made for my life that didn't include my partner? I haven't put my life on hold. My plans changed. The new plan is to spend whatever time we have left with the person I care about. End of story. It baffles and frustrates me to have to justify my desire to spend time with my PALS.
No he's not getting better. What part of degenerative or terminal was unclear? The hand of God has not reached down and miraculously healed him. He's still dying. I said that to someone the other day and was accused of being cold and unfeeling. No, stop asking stupid questions. You don't really care. You want me to say everything is fine and your social obligation is over. Please don't bother. Talk about the weather instead.
" You need to take care of yourself too." That's my personal favourite. How exactly? Are you offering to help? No, didn't think so. It's coming from everyone lately.
I've started to edit myself talking to my parents so they won't worry.
At work, that's a whole other story. My direct superior has started in on me. They have recently become a caregiver themselves. But you're not here? You couldn't leave fast enough. You are on indefinite leave. I'm picking up part of your workload. Your direct supervisor has gone on leave and I'm getting even more of your workload. How exactly am I supposed to be taking better care of myself? It's exasperating coming from the person who has made me sit through 4 years of budget meetings and justify how much time I would be absent to grieve.
Then of course there is the medical community. Very important you take care of yourself too. BTW, can you put me in contact with the neurologist? Isn't it in his chart? i haven't looked, it'll be faster if you just forward me the contact information. Remember, important to keep a positive front for your PALS. got to keep their spirits up. Oh and I need that order countersigned then sent to ODSP and his OT. And can you come in for a training session with the staff. They don't know how to use the BiPAP machine he's been using for over a year.
It feels like every person who is telling me to look after myself is also adding just one more straw on to the camel's back.
Ultimately, believe it or not. i'm doing fine. No this is not what I thought life would be like. It's different. Not ruined, not over, just different. I can adapt, I have adapted. I'm doing what makes me happy. I am exactly where I want to be. No, it's not going out with friends or relaxing on vacation. I get that it's hard to understand how this chaotic, stress filled life is enjoyable. i'm spending time with the person I love. Taking it how ever I can. Not because I'm obligated to, because I want to. Yes it's an incredible burden, my shoulders are broad enough.
Most days I'm tired. Some days I'm sad, frustrated or overwhelmed but I'm not a one dimensional creature. Nor is my PALS. We both had good and bad days long before ALS arrived. Our relationship had good and bad days before ALS arrived. We actually got into an all out yelling match and he threw me out of the care facility. Guess what, neither of us broke. What did break was the tension. That artificial "happy at all costs" atmosphere.
Sure I do most of my crying alone. I put a better face on things than I feel most days. Being "happy" all the time, not going to happen. I want him to know I miss him, that this is hard for me too. That I care. I don't want to pretend things are something that they are not.
Let me be, let us be. Only the two of us can find our way through this. Maybe it won't be the best way, but it will be our way.
Things don't need to be fixed. They're not broken, they just are. I'm sad. deep down in the bone sad. Depressed, scared, frustrated, guilty, second guessing myself, overwhelmed by times. That's okay. I'll be okay. Let me work through it. Don't marginalize or minimize it. Let me experience it, process and come to terms with it.
Let's be honest. Some times life just sucks. That just makes the good parts that much better.
Things have been pretty chaotic for the last couple of months. If it isn't something at work, it' something with my PALS or something with the care facility. Thankfully the home front is relatively calm, only my neighbour complaining about the state of my lawn this year. In all fairness, it's an mess. Do I care? Not a bit. I'm never home to see it. Sorry.
We've just passed the 4 year mark at the beginning of September. For what ever reason, I'm getting the " you can't put your life on hold" and the "you need to take care of yourself" speech a lot these days. I've started to get a bit snappy with people. I find my tolerance level getting lower and lower.
What plans do you think I made for my life that didn't include my partner? I haven't put my life on hold. My plans changed. The new plan is to spend whatever time we have left with the person I care about. End of story. It baffles and frustrates me to have to justify my desire to spend time with my PALS.
No he's not getting better. What part of degenerative or terminal was unclear? The hand of God has not reached down and miraculously healed him. He's still dying. I said that to someone the other day and was accused of being cold and unfeeling. No, stop asking stupid questions. You don't really care. You want me to say everything is fine and your social obligation is over. Please don't bother. Talk about the weather instead.
" You need to take care of yourself too." That's my personal favourite. How exactly? Are you offering to help? No, didn't think so. It's coming from everyone lately.
I've started to edit myself talking to my parents so they won't worry.
At work, that's a whole other story. My direct superior has started in on me. They have recently become a caregiver themselves. But you're not here? You couldn't leave fast enough. You are on indefinite leave. I'm picking up part of your workload. Your direct supervisor has gone on leave and I'm getting even more of your workload. How exactly am I supposed to be taking better care of myself? It's exasperating coming from the person who has made me sit through 4 years of budget meetings and justify how much time I would be absent to grieve.
Then of course there is the medical community. Very important you take care of yourself too. BTW, can you put me in contact with the neurologist? Isn't it in his chart? i haven't looked, it'll be faster if you just forward me the contact information. Remember, important to keep a positive front for your PALS. got to keep their spirits up. Oh and I need that order countersigned then sent to ODSP and his OT. And can you come in for a training session with the staff. They don't know how to use the BiPAP machine he's been using for over a year.
It feels like every person who is telling me to look after myself is also adding just one more straw on to the camel's back.
Ultimately, believe it or not. i'm doing fine. No this is not what I thought life would be like. It's different. Not ruined, not over, just different. I can adapt, I have adapted. I'm doing what makes me happy. I am exactly where I want to be. No, it's not going out with friends or relaxing on vacation. I get that it's hard to understand how this chaotic, stress filled life is enjoyable. i'm spending time with the person I love. Taking it how ever I can. Not because I'm obligated to, because I want to. Yes it's an incredible burden, my shoulders are broad enough.
Most days I'm tired. Some days I'm sad, frustrated or overwhelmed but I'm not a one dimensional creature. Nor is my PALS. We both had good and bad days long before ALS arrived. Our relationship had good and bad days before ALS arrived. We actually got into an all out yelling match and he threw me out of the care facility. Guess what, neither of us broke. What did break was the tension. That artificial "happy at all costs" atmosphere.
Sure I do most of my crying alone. I put a better face on things than I feel most days. Being "happy" all the time, not going to happen. I want him to know I miss him, that this is hard for me too. That I care. I don't want to pretend things are something that they are not.
Let me be, let us be. Only the two of us can find our way through this. Maybe it won't be the best way, but it will be our way.
Things don't need to be fixed. They're not broken, they just are. I'm sad. deep down in the bone sad. Depressed, scared, frustrated, guilty, second guessing myself, overwhelmed by times. That's okay. I'll be okay. Let me work through it. Don't marginalize or minimize it. Let me experience it, process and come to terms with it.
Let's be honest. Some times life just sucks. That just makes the good parts that much better.
