SeaGunny’s thread

[SeaGunny]

Follow up.

I find I grieve for just about all those major decision points or portions of my life where I may not have survived to the age I am. I also grieve for others, particularly those who have crossed paths with my early profession, Certain songs will push me to near tears, more so now that in the past.

After a beer at the local VFW (been over 2 years since I had any alcohol) I realized that I am "damaged" far more than I could imagine. I enrolled in a Grief class. I have been to ONE session There are about 14 women in this class, and 2 other men. Some of these women are grieving a death that occurred over 10 years ago! I can understand that - just can't quite figure the emotional breakdown now of a death over 10 years ago. Sorry, we all deal with grief in various ways and our road to recovery is as varied as any road map one has even encountered.

What I did observe, is that women were more open about their grief but the other men were much more reserved. I think that goes with the territory. Women seem to have longer periods of mourning than men. This may or may not be true an I have no way of measurement of that factor other than the number of attendees and the dates of deaths of those they grieve for. As far as needing the therapy, I get the feeling I am one who needs it way less than these poor souls. Anyway, a sister of mine showed up and I can tell you I relaxed to the point where I knocked out 17 hours of sleep in an 18 hour period. My sister was counting!

 

[Mary2]

SeaGunny, I appreciate your thoughts, observations, and insights into these issues of ALS and grief. To stay timely, I have been playing some Taylor Swift music and some of her songs bring me to tears. And Nights in White Satin by The Moody Blues always puts me in a meaningful space, thinking about the essence of time.

I never made it to the Grief class. I spoke with the co-ordinator and she was very nice and told me there was a man who had been coming for 6 years. She is single and it occurred to me he might like the co-ordinator! I am not sure why I didn't go. I am so locked into the ALS experience that I wasn't ready to hear about the Alzheimers or the Cancer experience.

Grief is composed of at least 9 different emotions and one of my emotions is regret. I tried speaking to several grief counselors and social workers about this. Interestingly they seem to have been trained to think that when we grieve we have regrets and guilt that isn't real or justified. They also want to reframe my viewpoint and feelings, while I want my view point and feelings to be acknowledged and accepted. It has been an interesting experience trying to receive support. For better or worse, Facebook does help. I can increasingly see why people are hooked on social media.

I have previously thought that a sister would be very nice to have. Especially one that shows up! I would love to have 17 hours of sleep! It is 3 am and I am awake now! Yet I am suppose to be at a ladies' coffee at 10:00. I won't be my best!

My husband's anniversary of the passing is coming up. February 27. I have cleared my schedule to find ways to honor him this day. Candles, documentaries about history and space are a couple of ideas. I stay up on the news to honor him, since he always did this. My best therapy is finding ways to honor him. I have signed up to write thank you letters to donors for I AM ALS. I need to follow back up on this. And of course there are the taxes! I better get my act together about those!

 

[Narrowminded]

Grief is fickle. I am out 5 years, and most days are good, however certain times of year are hard. This past Friday would have been our 39th wedding anniversary. Yeah, the week was a mess.

I will say finding a counselor/therapist for a one on one is the way to go. It may take a few tries to find a good fit, but when you do, it is so worth it. They will validate what you are feeling and why.

ALS changes us all. Our lives will never be the same having gone through what we have. I know for me, the "don't sweat the small stuff" was so very true after, to the point it really annoyed me to see people doing that and having arguments about things like that too. Life is way more important than the small stuff. It's like you want to clock them upside the head and make them understand.

I'm so glad that you got a good 17 hours of sleep. You and your body needed that.

Try and relax into your grief. It does help.

You are in my thoughts.

hugs

 

[Marnes77]

I am 4 months in. 5? I dunno anymore. No less destroyed than DX day of Jan 12th 2023. More destroyed actually. I am only 46. He was only three days shy of 56 when he travelled to die with dignity. I lived with this prospect (or DIY) largely alone since DX day while working, caring, parenting a young child etc. I am still not back to work. I can barely function. Do what is needed for daughter.

She is in her biological dad's for the weekend. I am home alone in silence and profound grief and trauma. I can't face normal people or normal activities. Can barely shower or leave the house.

Most family and friends have disappeared. Normal life continues. Mine is over. I have no hope of getting over this or ever experiencing any joy again. On meds. Doing the counselling. Does nothing.

Wish I could be more cheery. But is what it is.

Hope others are handling this better than me.

 

[lgelb]

Marnes, I don't have anything profound to say, except that it does get better. And by "better," I don't mean "hurts less," I mean "you reconnect more with the things that are not what hurts."

By acknowledging your pain, even if meds/counseling aren't the whole answer (they rarely are), you are on the right path. Keeping it real is actually harder than keeping it cheery. Don't feel boxed in by anyone's expectations, including yours, for the number of months since, or any arbitrary timeline or order of things.

There is, however, value to keeping it moving -- like making an appointment on a comparatively "good day" and then keeping it even when it falls on a "bad day." It's like regaining muscle memory, these "other things."

So my best advice can only be, follow your feet -- they know the way.

 

[Mary2]

Marnes, I am sending you a PM.

 

[Mana]

I am so sorry for your loss, Marnes. Please hang in there for yourself and your daughter’s sake. Remember that you’re not alone. Use all your resources. Reread lgelb (Laurie)

 

[SeaGunny]

Marnes, I fully understand and I am deeply sorry that you are enduring this situation on both sides of before and after. I just got back from a trip to my siblings. Because I slept so much they figured that I might have Diabetes. I got the Blood Sugar test by 2 (family) RNs who insisted I take it before leaving. I did get out - but felt disconnected as I did not have full access to my computer (plus those pesky passwords) no full access to my e-mails. Oh - I passed the blood test to everyone's surprise!

One thing in my favor (also one detriment) is the ability to fill my time with my own ideas (both good and bad) which comes from being (I think) a "latch-key kid". Like you, I am going through months of unopened mail, hoping to find all the Tax docs I need to file.

The last activity is a struggle, but must be done - or else. I also agree with Mana about re-reading the comments of lgelb. As terrible as I felt on my trip, I did get out and meet people (sales!) which gave me options. I saw my siblings and found out their state of affairs were and are. The options are related to "what am I going to do now?" Move slowly, and ask the Almighty for guidance. Even IF you are not cheery, seek out sources that are funny. We are survivors of a very depressing process and are shocked into a shattered state when the time, demands are removed and faced with time on our hands overlooking the normal demands on us as we recoup as well as our personal loss. May God Bless and Keep you.