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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.
 
It has been a while. You saved it all up for us. Believe me we all understand and have our own rants. You are doing a wonderful job of hanging in there through it all. We all get and give the take care of your self advice because you really do have to take care of you in order to be your best for the both of you.

I do admire your resolve and understanding that sometimes life does suck but there are still good times.

Please try to stop on in here more often just to touch base. Trying to word my words so that I don't sound like your rant .lol. Hugs
 
Your insight is always so good to read. Not because it is nice and flowery, but it's so real!

As carers we do need to take care of ourselves. What I found was that most of the people who said that stuff didn't have a clue of what our priorities are and what kind of things would really be that for me. There no actual 'right or wrongs' in this.

For you, actually leaving that lawn and not caring, is actually a way of self-care and good on you! What a pity that neighbour doesn't just offer to do your lawn every now and then. But then if you don't care much, that doesn't matter either.

For me, gardening and mowing was a real self-care activity. And I have a LOT of gardens and 'lawn'. But of course I would get the opposite - oh no you shouldn't be out there gardening every evening when the carer arrives, you should do something for yourself! duh I am ...

I even had just one time in the whole illness when Chris's stepfather came here. He said, I will mow for you. I said PLEASE NO. I explained and gave him a list of things that I would really appreciate him doing outside, but that I LOVE mowing (it's a ride-on) and really need help with other things. The one day I went out while they were here (care staff were looking after Chris) I came home and you already guessed it - there he was on my mower ...

I think we all just need the situation to be acknowledged. We don't need to be told how to 'be', and we don't need any more pressure put on that's for sure.

And we need to be able to vent in a safe place when the pressure builds, because it will build. What I find so powerful is that someone like you vents, and it relieves pressure for many people, not just for you.

Thank you for sharing so deeply the real stuff. You know we wouldn't be amazing if this was easy, courage is facing something that scares the pants off you.

I really resonated with your words:
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.

That really sums it up. All the people who pull the sad eyes and give glib advice don't realise that we are real people with our own real needs and desires, caring for another real person with real needs and desires and we are individuals. So a big hug to you for being able to say all that stuff in such a deep way that has really resonated with me. You will never regret for one moment all that you have done for your partner and for your relationship. And no one can ever take that from you either, it's totally yours forever xxx
 
Your rant has also helped me. The line "you have to take care of yourself" that is thrown at all of us, mutiple times from so many people has become like nails on a chalk board. I have already determined the next time my Dr says that to me, I'm going to ask her when I can pencil her in. My DH is on a vent, I cannot be out of ear shot when my nurses are not here which is all the time when I'm not at work. Like you said "how". But my response is also - I've a survivor, that's what I do. You are right, we each have to find our own way through.

All I can offer is virtual Hugs. I could go on, but this is your rant, but it has helped me and those above at well. We are here for you and we "get" it.

Hugs,

Sue
 
Hi Paul, and welcome back. Boy you said a mouthful. I particularly relate to the part about putting your life on hold. Really? This IS my life. HE is my life. It's different. It's not what we planned for, but it's what we have and I'll take all we can have. Big hugs, Paul. Rant any time.

Becky
 
I so used to be in your shoes. All the snarky...take care of yourself ...comments got an earful. I lost my filter. I started saying well if you could pick up my groceries I ordered, or mow my lawn,clean my house, etc, I would be able to care for myself. I kept a running list for those that didnt stop with the selfcare thing.

The thing is Paul, the cruel hard facts, is that this disease is also taking a toll on you physically,mentally,emotionally, and financially. You will be left with injuries and damage later on...and your life will continue. So in a sense, self care is for your quality of health long term. I learned this the hard way. It can be simply like a cup of coffee outside on a nice morning, gardening, watching a movie, getting a massage...anything so you can relearn relaxation.

I am so sorry you are dealing with the stupid comments, justifications, etc. Let uour heart be your guide. It was why fmla was invented. Many hugs for you and rant away anytime. Steph
 
My dad used to tell people that I hadn't figured out what I want to do with my life. One day I just went crazy and told him, "I am HERE. This is what I want to do. This is what I AM DOING!"

Meanwhile, my sister tells me that I need help, right before she tells me she's heading into a meeting... *eye roll*

Humans are inherently selfish. Many people cannot understand taking care of another person because that's what the other person needs and that can be exactly what it needs to be.

jen
 
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