After ALS...

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GilWest

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I sincerely am going to seek counseling for PTSD after this is all over. I may have to be careful and ease back into everyday, normal, free life slowly as to not become overwhelmed. Two years nothing but thinking about ALS and caregiving 24/7 has taken a toll.
 

Atsugi

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Yes, definitely. It's not exactly PTSD, but it is intense. The subconscious stress that I continued to feel after my wife died actually caused me to "lose it" in the office and suddenly quit a good job. I should have gone above my supervisor to HR and explored my options. Perhaps if I were seeing a therapist weekly I could have talked through that.

Some counselors are much better than others. I had to try out six of them before settling on a good one. Took me a year.
 

zoohouse

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I believe I will need counselling as well as physiotherapy. I see a PT once a week now just to keep me going, but I have severe tendonitis in my hands, arms, and shoulders. I have very painful bunions but can't even consider having them fixed while I am caring for Tim. I need a complete overhaul mind and body. Thankfully at this point I have a ton of spiritual support, but know there is a dark time around the corner. This last week Tim so sick with his gallbladder and sepsis that I thought I might lose him and I was not nearly prepared.
Paulette
 

affected

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I believe for many carers there is a very real amount of PTSD, me included.

For those who dealt with FTD on top it can be huge.

Do seek counselling, and do connect with others at that point. I'm glad to see you posting!
 

gooseberry

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My son sees a counselor but I have time with her also. I dont know what I would do without her.
 

Barbie

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Gil don't wait until it is over, start now! the stress of this disease is overwhelming. Hugs
 

gooseberry

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I have lived the cancer death several times with my parents and sister. My sisters and I were their caregivers. Yes I was sad and grieved but I wouldn't say traumatized. ALS is a whole different animal to me. I do feel traumatized by the caregiving side physically and emotionally. There is never a reprieve, never a great day, never improvement. It mentally crushes you.

I am a glass half full person. This disease makes it so difficult to be optimistic when you see your loved one live this disease daily.
 

Snowman78

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I definitely struggled and to an extent still struggle somewhat. Thankfully I have an amazing support structure of friends who have stayed by my side through all of this. I hold it together pretty well now, but seems like in an instant I can go from fine to tears running down my face by seeing or hearing the slightest thing that takes my memory back. This is the hardest thing I have ever had to deal with by far. For example I was watching a TV show the other night and this persons boss gave them a van with a lift for her daughters wheel chair and I just started balling crying because I could relate to how amazing that gift would be because of how much we struggled to take dad places he needed to go without one. Take your time and process through the transition at your own pace, someone who hasn't dealt with ALS has no clue. My prayers are with you.
 

cheerleader

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Thanks to all who contributed here. Like Steph, optimism is my main trait- and the aftermath of ALS has been devastating. As I've read your comments, it was so helpful in my understanding of why the bounce back to life without him has been much harder than I ever thought and returning to optimism a challenge. The analogy to PTSD was accurate. I continue to be grateful for all of you who help put things in perspective and help make sense out of a disease that doesn't make sense! A very helpful thread! Donna
 

Green Queen

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All you lot are my counsellors. I have a lot of faith and trust in what answers I get to my questions, and find such clarity reading the very tender and caring posts to each other.
I guess we all have our own ways of dealing with things.
Gil, I firmly believe in starting how I mean to go on, and in doing today what shouldn't be put off till tomorrow. So, as Barbie says, starting counselling now will be nothing but beneficial. You can see in Stephs post how counselling is a positive in their lives.
Sometimes we need a gentle push, other times a bloody big shove, to move in the right direction.
So Gil, this is my gentle push. A counsellor will help you with strategies to move back into that normal everyday life.
Take care of you.
God bless, Janelle x
 

Blondrea

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When my partner was diagnosed, I went to a psychiatrist for the first time. He said something I found reassuring. He told me that I wasn't suffering from post traumatic stress disorder, because there was nothing "post" about it. I was smack dab in the middle of the trauma. And that made me feel better. This stress and trauma are very, very palpable.
 

Green Queen

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Andrea, I found your post very reassuring too. Very wise words from the psych.
Something to remember. Even though life is 'normal'...it's not. We adjust to the new normal then something else kicks in.
Your post has really helped me today, to realise it's ok to be...not ok.
Take care of you, I hope something happens today to bring your beautiful smile to your face.
God bless, Janelle x
 

affected

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Blondrea - that why it's a PTSD afterwards ...
 

Michellesews

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It's PTSD alright only for me it's Present Traumatic Stress Syndrome.
 

affected

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Gil how are you doing this week?

Have you thought about whether you can start seeing someone now while still caring? I often think of you.

Michelle being a CALS is a huge trauma but after ALS the nature of the trauma certainly changes.
 
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