Atomic Meltdown

[TamaraLee]

I do not have to explain to any of you how much living with a spouse with ALS SUCKS! I am so very tired! I am sick of putting on this brave face! I am pretty fed up with my husband and his demands! I DO NOT want to be responsible for every little detail of our lives. Paying bills, lawn work, shopping, cleaning, cooking. You name it and I am doing it and poorly at that. I am jealous of other people and what seems to me the charmed life they lead and nor do I want to hear anymore of their advice while they are heading out to the lake for the weekend.

Yes Saint Tamara had a meltdown today of epic atomic proportions! I am sure if you looked north you saw the mushroom cloud in the horizon! So....I sniveled and blew snot for about an hour and then I called my therapist for the first time in six months and guess what ...I have an appointment on Monday. It looks like I am going to survive. Thanks for being here and listening to me rant and rave because as you know ...ALS SUCKS:roll::roll:

 

[lgelb]

Hey, Tamara, there are no saints in our crowd, so you'd be the first!

Let us know if we can provide any practical advice for on the "trying to do it all" front. There are many people here who are good at different parts of it.

The clueless "I can't wait for my weekend" types are the worst, I agree. It is hard to watch people who have everything act as if they have nothing.

Glad you survived the mushroom cloud, and hope things go well on Monday.

Best,
Laurie

 

[NinaP]

Today is my bd. Every year i had a big party with over 20 friends. Today i got up cleaned mum with sis, washed the winter blankets, ironed a mountain of clothes while mum wanted water, wanted to raise her legs, wanted bathroom. I was so upset all day. Then had a bath and went out for a walk to calm cause i was ready to start yelling at her. When i came back my brother got me a cake. He and mum planned it. Now im sitting next to her singing to her. Hold on. Keep strong. God is watchibg over us.

 

[TamaraLee]

As my mother has pointed out NUMEROUS times throughout my life...I am a bit dramatic. Unfortunately or not it does seem to be true. However I do try to keep my sense of humor. Yesterday was a breaking point for me. No matter how many times I tell myself my friends and family really just can not relate to our situation. Sometimes in a weak moment I will share for want of better words "My thoughts" usually with disastrous results.
I realize that others do not have any idea the struggles ...pain...fear I experience. My faith is instrumental in coping...some days though my faith will only carry me so far. Sometimes I look back at what both Clifford and I have both endured. Cancer on both of our counts. A terrible brain injury as a young man. A horrible very rare brain incident "Superior Sagital Thrombosis" that lead to me relearning to speak, walk...etc.
Now this monster ALS has reared its very ugly head.

 

[TamaraLee]

Hi Nina and A Huge HAPPY BIRTHDAY to you....it is very interesting the impact a cake can have in our lives! I know how hard it can be taking care of a a loved one ...in your case your beloved mother. I am sorry you have to ...live through this pain...you are so right my dear...The Lord is watching he knows what we need and today he has sent me Nina. Happy Birthday Again!!!!

 

[Jlynn]

Happy a birthday Nina! I wish it had been a better one for you but it was very nice that you got a cake. It's hard to celebrate anything when your life feels like it's upside down. Glad you got a bit of a walk in. Fresh air is good for the soul. Big birthday hug to you!

Tamara, you have every right to the occasional meltdown. It sounds like life has thrown you some major curveballs. We have all had them so your in the right place at least!

 

[NinjaLady]

I could have written your exact post myself...sounds like caregiver burnout to me. Every little thing feels bigger than it is as all of it together is so overwhelming. So much responsibility it is ridiculous, right?! I day dream of what it would be like to just have to take care of myself or stay in bed all day (or all year). I had a meltdown yesterday too, so maybe it was something in the air! It is simply exhausting physically, emotionally and psychologically to be a CALS and at the same time we have nothing as big and horrible as what our poor PALS are going through. ALS sucks so bad and destroys so much.

 

[wishmobbing]

Tamara, the fallout from your mushroom cloud didn't reach Europe yet. I'm glad you got the appointment on Monday. Until then rave and rant as much as you can here.

I see it as a measure of my mental health if I can be happy for someone else's weekend plans or listen to their grievances. The bitterness showing towards others with less strain on their brain is very understandable. Best grab them by the throat and be heard, maybe some help will come your way. This is nothing to keep to yourself.

I wish all of you CALS lots of energy and understanding PALS. We have to take care of each other or the beast will win.

Happy birthday to you, Nina! Good you had a silver lining with the cake. Did you know that once you pass 30 your birthday lasts a whole week? It's true. Tell your family and let them figure out a way to treat you to some good time. Taking a bath or ice cream. Or taking a bath in ice cream. That would be the sweetest form of a meltdown I could imagine.

 

[Jrzygrl]

The burnout is hitting me hard lately too. Some days I wish I had a Go-Pro camera on to document our day. I don't believe that anyone who has not been a PALS or CALS can truly understand the toll this disease takes. My husband sometimes drives me crazy with all his "requests" too. It gets overwhelming. When its at its worst, I call it one of his "diva days".

The mental and emotional part is the worst for me. We all know there is only one way out - and it's not pretty. It has even started slipping in to my sleep. Twice in the past week I have been woken by terrifying nightmares. In the first one, my body was covered in sandbags and I couldn't move. In the second, there was something over my face and I couldn't breathe. Tell me thats not related to the realities of ALS!

Hang in there my lovlies!

 

[Jlynn]

Oh jrzygrl...that's awful that this monster disease is even invading your dreams! That was the only time I felt I could get away from it was when I could sleep.
Great idea on the go pro. Like most situations in life it is hard for others to understand the situation and what it may feel like unless they have been there no matter how empathetic a person they are. A walk in a day(or more) in a PALS and CALS life would be and is a real eye opener.
About a month ago my own Mother (who lives 1800 miles away and was NOT a caregiver) said "Well at least he died from a disease rather than being an innocent bystander in a shooting like a co workers Son. By the time he got to the hospital his Son was dead so he didn't get to say goodbye". Now I'm not one to choose what the best way to go would be but I just sat on the phone thinking to myself "well watching my baby brother slowly wither away wasn't much fun either." Our own mother didn't understand so how could anyone else? They saw him every 4 months for a day or two. I'd shave him, dress him up and prop him on the couch. They saw him at his best and missed all the "fun" stuff.

 

[NinaP]

Jlynn one of my monthers friend lost her mum from a stroke a month ago. She came to visit mum and she said right infront of us thank god she died likd that without having to suffer. She said that infront of my mum. I was so upset. Mum was crushed. Can you believe this is the miracle im asking for? My mum to die in a easy quick way. Your brother died? Im sorry. My and siblings are hugging behind closed doors and are still in shock. God. What can we say.

 

[Jrzygrl]

Jlynn,

I get you on visitors not seeing it all. I always have my husband up, washed, shaved, dressed, fed and to the bathroom by the time anyone comes to visit. That alone takes an hour or two. Don't even get me started about shower days.

My MIL wanted to take us and the rest of the family out to a big dinner for our anniversary recently. DH didn't say anything. While he was outside with my kids, I took MIL aside and told her that it would not be enjoyable for us to go out to dinner at some fancy restaurant. I have to feed him since he has lost the use of his arms, and he does not want to be watched by others. Her reply? Well it would only be family. No, you're talking about taking him to some restaurant (of course of her choosing) where there will be people who have no idea what's going on. I will not put him in that uncomfortable situation. Her response - Oh, is he getting worse? Uh, yeah - every day! Sheesh, you think his own mother could see that. I told him later what I said and he thanked me.

She came up a couple of weeks later and asked again if we had changed our minds. NO!!!! Then she said, Well, I'll talk to him about it. I about lost it. I told her that he and I had already talked and he did not want to go. She then proceeded to ask him, while I was not in the room, if he wanted to go. This time he did tell her NO. Come on woman, get a clue!

 

[Jlynn]

Even Mothers can be clueless when it comes to their kids I guess. My brother felt the same way about not wanting everyone looking at him and treating him differently then they did prior to diagnosis. Even his own mother. It didn't matter that it was family. He still felt the same way. He got to a certain point and stayed where he was most comfortable. At home. It's such a dignity robbing disease. It's always taking something from our PALS but it's not always something that others notice. We do because we see it every day. All the little losses that even family don't recognize. You really hate to have to sit them down and explain it all on top of everything else you have to do. In this day and age if you want to learn about ALS all you have to do is read on the computer. Join this forum. Read and learn. Our parents never did that. To me that was sad. Even before I knew I was going to be my brothers primary caregiver I had read all I could. I wanted to prepare. I wanted to know what was coming so I could help him. I wish the rest of the family had felt the same. They didn't so I wouldn't even try to explain the ins and outs of every day life with ALS. It's almost unexplainable so they would visit every four months and say "He looks a lot better than I thought he would". Yeah. Ok. Your hubby is very lucky to have you as his advocate. Protecting him even if it is from family.

 

[TamaraLee]

Although I have been a member for a couple years This was pretty much my first post and truely I had mixed emotions. As I felt like a major complainer...as I pushed send my internal voice was screaming DELETE! I am so very glad I did not listen. You all are so helpful and what I learned is I am not alone....THANK YOU

 

[tripete]

on behalf of your PALS, i am sorry to put you through all of this. i wish i did not need to have you do everything for us. it hurts to see the pain we cause you.