It has been 2.5 years...

[rocmg]

... and I still miss my mum everyday. I still cry when I think of what she went through. I still feel so sad that there's still no cure.

Just this week I had to take time off work as I fell back into a deep place of anxiety.

I just miss her so much and I am considering returning to caregiving - the period looking after mum defined me so much - 5 years. Still, nothing seems important. Not sitting at a desk stressing over emails, or dealing with petty issues.

i'm going to take some time and read through some threads tonight.

I'm thinking of you all, PALS and CALS alike.

 

[lgelb]

I agree with you that the petty issues at work seem picayune after caring for a person with ALS. It has been a few months less than 2y for me but I feel that strongly. How does that translate into anxiety for you, though?

Best,
Laurie

 

[rocmg]

Hi Laurie - thanks for taking the time to reply to me. If you have suffered a similar loss in a similar time frame and still keep up to date with ALS forums, I suspect you will understand what I mean if I describe the anxiety.

I think for so long ALS was my life - 5 years- as well as the disease that mum eventually succumbed to. I remember always having to be on high alert and constantly switched on - ready to swing into action to assist at a coughing fit, or hospital trip, or just to rally myself internally before giving a really strong 'pep' talk when she became very emotional. I think as a result, my personality changed. I feel like a very serious and intense person - and I'm not sure if that's truly who I am, but at the same time, it is apparently who I am. I've entered a phase now where I'm trying to realise I don't have to do things if I don't want to; that I can say no to situations where I feel i will be overstretched and out of my comfort zone. I am only beginning to learn what 'normal' responses are to things - and that basically I don't need to be in a constant state of emergency. However, re-learning more appropriate responses takes time and actually a lot of effort on my part. I felt the old anxiety creep up on me at work when a lot of emails just got on top of me - internal bickering. I just decided enough was enough and took myself out of the equation. I am now on sick leave for 2 weeks with work-related stress. I am trying hard to control my anxiety and taking myself out of stressful situations to give myself time to formulate calmer and more rational responses. Hope this makes sense?

 

[lgelb]

R,
That's interesting. I get what you're saying, but it was the opposite for me. I'm calmer now at work -- still passionate but less strident. I let more run off my back. It's just not important. Maybe you could have a mantra or another pursuit to help you take it down a notch.

Maybe whatever I do to try to help people out is a part of decompressing. You might find something similar in a volunteer capacity where you are? After my husband died, my son, who helped care for him, started volunteering at an assisted living facility and gets a lot out of it. It's nothing to do with ALS, but for him, it's honoring a memory, as well as the satisfaction of helping.

 

[rocmg]

Thank you again for your reply - and I get what you're saying. I am just having such a hard time 'switching off'. I do think that I am struggling to find the relevance or importance of my work and think perhaps it is time for a change - that could be a big part of the problem, really. I am really only starting out on my career - and i feel like, i don't want this to be my life. there's more to life.I really have considered caring again because i think my experience of caregiving might be useful to someone else. thanks for listening.

 

[affected]

For me it was nature that has done a lot of healing. I have always done some kind of voluntary work, but I let go what I used to do and now work voluntary with koalas who are now a vulnerable species (shocking I know).

I'm regenerating koala habitat too.

But I get a lot out of supporting others still dealing with ALS. It doesn't give me pain, it doesn't drag me down, it helps me feel like all I went through, and what my husband went through, can at least be of help to others.

I hate ALS too. I still miss my Chris like hell, it's nearly 2.5 years for me too. Seems like last month in many ways.

But I have found many ways to find joy in life.

I think that reaching out here could be the start of you turning things around. It was wise to take some time off work and start caring for yourself and realising you have a future.

 

[IluvNY]

I sympathize with you, I am also still dealing with grief, anger, isolation,depression and just overall sadness 3.5 years after losing the love of my life. Today is the first time I have been in this forum in a long time. I don't come in too often because quite frankly it is depressing not to see some of the members from a few years ago, knowing that they are all gone now...RIP. I am feeling extra sad today because I am making an attempt after 3.5 years to clean his closet and pack up his clothing, etc and then decide who I will donate them too. So many memories, everything I touch or read brings back memories...I just threw out a traffic violation warning from 2002! I was with him that day. It’s going to be difficult, I feel the sadness and overwhelming feeling of depression coming on as I touch and move his belongings but it’s time to clean the closet, organize and donate. I just felt like taking a break and checking into this group as it provided me with a lot of comfort when my honey was diagnosed in 2011. I hope I can at least get everything out of the closets and packed up by Monday. Whoever said time heal all wounds was a liar or didn’t experience the pain of losing a loved one or maybe they were super human beings or super spiritual and dealt with loss better than me or you. I still think of him everyday, throughout the day, I talk to him, I feel his presence but the pain and anger does not subside but we go through the motions because life does not stop because of our pain and sorrow. I just wish that people who have never felt this type of pain would not be so judgemental and understand that yes, even after 2.5 or 20.5 years, we still grieve and still have hard days that make it difficult to get through this things called life. You hang in there and just take one day at a time….I send you big cyber hugs

 

[Loverly]

Whoever said time heal all wounds was a liar or didn’t experience the pain of losing a loved one or maybe they were super human beings or super spiritual and dealt with loss better than me or you.

It has been 9 months for me and I'm in agony. I can't explain it. I've never felt this way over a death in the family for so long. My family started talking about Kathy at dinner last week and I had to leave the restaurant to have a wrenching, sobbing cry in a dark corner outside.

I absolutely hate my job, one I wanted for so long, and I just want to scream and cry all the time. I'm actually looking to buy a business so I don't have to deal with the office politics, which are driving me crazy.

At night I can hear my dad talking to her in the dark and it's breaking my heart.
His health is deteriorating and that just makes it harder to adjust.

I don't know what to do.

jen

 

[skipper66]

It will be a year November 21st since dad passed away of ALS. This Sunday, the 11th would've been his 82nd birthday. I have trouble sleeping becaause I have horrible nightmares of his last hours when I do. The pain of the loss has not gotten any easier. Everyday, is just as painful. Kim

 

[affected]

I think my grief was at its worst between about months 8 - 15 or so.

I still grieve, but the really raw edge, and overwhelming waves of grief and tears have stopped.

I still just suddenly well up at times, but it's quite short-lived.

I just feel a hollowness at times, most often when something great happens and I feel the loss of sharing it with Chris