Feeling scatterbrained

jonico

Active member
Forum Supporter
Joined
Feb 21, 2017
Messages
62
Reason
Lost a loved one
Diagnosis
12/2014
Country
US
State
NY
City
Central
I was reading a few of the past caregiver posts and I can't get Jrzygrl's 'Still no words' post out of my head. Two steps forward, one step back. I guess I have a question for all of you who are in this group. After about six years of having to be super organized and proactive and essentially developing a routine that was very similar each day even though it was constantly evolving, I'm having the hardest time focusing. I thought I would dive in and get our house organized and throw away a lot of things and to a certain extent I have. But I feel like I have hit a bit of a wall, and I just find it all pretty overwhelming. I also feel like I am caught in an endless cycle of reminiscing in my mind. We have thousands of photos, split between albums and digital, and lots of loose ones. I went through most of them and threw a quite a lot out, but I didn't make a dent. I envisioned paring them down to substantially fewer albums. Similar with all kinds of other memorabilia, like old letters, journals, things from when the kids were younger, etc. I have gotten some important things done. But I still feel kind of paralyzed about trying to sell Nicole's PWC and our vehicle. And I generally feel like my house is still pretty cluttered and disorganized. I have an appointment to speak with a Hospice grief counselor in a couple weeks, so that should help

So here is my question for all of you... Did any of you experience similar, or are you still feeling this way? Do you have any advice? I did start with bitesize chunks and that went well with the main things that had to go relating to ALS, but now I feel like I am just moving the same things around all the time, and wasting loads of time. Part of it is I feel kind of like I am a 'memory-hoarder', which makes it really hard to throw out anything that reminds me of Nicole.

Appreciate your thoughts...Jon
 

lgelb

Moderator
Forum Supporter
Joined
Nov 5, 2009
Messages
8,921
Reason
Lost a loved one
Diagnosis
00/0000
Country
US
State
WA
City
Seattle
All very normal, Jon. I have several boxes in my closet that I haven't gone through after six years (not that I was into that pre-ALS, but...) I start remembering our married life and veer off.

You started as early as anyone, which means you will have false starts. The time is not wasted; it's invested in your future. And you may not have fully given into grief yet, or be one of the people that has to at intervals.

It's OK to go slow. I believe this is a form of tribute and unless it keeps us from important things like paying bills or eating, there's no harm in it at all. You will hear people say it is wallowing. Wallowing away from what? This is and was your life, your relationship.

It will get better.

Best,
Laurie
 

affected

Guru status reached
Joined
Apr 26, 2013
Messages
12,696
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
AU
City
lala land
Absolutely!
This is something not often talked about, but it is really something nearly all of us past CALS go through.
It plays out in so many different ways that sometimes it is not recognised as the same thing happening, just to very different people and their life situations.

I have run my own business for more than 25 years and loved what I do and can be a workaholic. The only time I really felt 'normal' as a CALS, was when I could spend a few [decreasing over time] hours per week working. I presumed I would throw myself into my work when Chris died. Well what a shock it was for me when he died that I just didn't give a rats arse about any of that. I could spend all day out in the garden, but get organised and do anything I 'should' be doing? Nup just couldn't.

I learned to laugh at myself and say, sure girl, do what you gotta do. I planned much less than I used to because I could not say which day this week I would be able to work for even a few hours. If I felt I could work I did, and I forgave myself if I didn't.

I learned to scrape by on one third of my usual income and my major clients were so generous in giving me time for things that were not really important. I managed to make all the critical deadlines, and not fret about anything else.

Over the years I came to a place where I can now work enough to earn what I need, and I spend far more time doing what brings me pure pleasure in life. I feel I am far more balanced than ever. I have to pay a mortgage so I have to earn a living, but I now only work an average of 3 days a week. I still just tell myself to do what I gotta do and if I get something done, great, if not, ok. I can't explain what a difference this is for the person I was!

6 years after Chris died I finally had some roof guttering work attended to a few months back. The plumber was a lovely man and he lost a daughter a few years ago. We talked about grief and I admitted that I knew the gutters needed this work some years ago, but I had been stuck in this weird place of putting things off. He looked at me and frankly said - yeah well it hasn't made any real difference to your life not to have done this earlier has it. That was one of the most freeing things anyone has said to me since Chris died. So true - not tending to the little detail has not made any true difference at all.

So I hear you and I would simply say - go with your heart. If you need to do something, you will, if you don't do something, you will probably find the world keeps turning and tomorrow comes around. Maybe you will do it, maybe not. Just let yourself grieve however you have to and don't let the little things pull you down.
 

jonico

Active member
Forum Supporter
Joined
Feb 21, 2017
Messages
62
Reason
Lost a loved one
Diagnosis
12/2014
Country
US
State
NY
City
Central
Thank you Laurie and Tillie. Both of your perspectives were very helpful. I gave your comments yesterday to germinate, and I felt I had a different perspective. Not dramatic, but different...a little better. Appreciate it...Jon
 

affected

Guru status reached
Joined
Apr 26, 2013
Messages
12,696
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
AU
City
lala land
Gosh I totally missed adding that CALS also experience PTSD - after all, seriously, what could be more traumatic than witnessing the love of your life go through this disease, and being alive after it takes them?
A symptom of PTSD is definitely being scatter brained.

However grieving is a far longer process than I ever anticipated, it doesn't take weeks or even months.
I'm so glad anything I write can help, we all grieve differently, and yet there is real common thread at the same time.
 

Nuts

Extremely helpful member
Forum Supporter
Joined
Feb 23, 2014
Messages
2,549
Reason
Lost a loved one
Diagnosis
01/2014
Country
US
State
NC
City
Littleton
Well, you had responses from two of the most knowledgeable, caring people I've ever come across. They got me through five years of ALS, and they are smack on about things on this side of the rollercoaster.

I thought my body would require the most work after my husband passed. Nope, it was my brain. I'm two years out and just now realize how great the fog was. I wonder what I'll know in two more years about my condition now.

Things that I couldn't stand to see not take care of immediately simply don't matter now. I'm jealous of every single moment of the day, so I use them as I wish and don't worry about many things that I used to, because there is no one else here to benefit from that expenditure of energy. Sometimes all I do with those moments is nothing--but apparently that's what I need. Do you remember how precious a moment of doing nothing was while you were battling the beast?

Thing are turning around for me now, but I will never be the driven person that I was before. Not unless some urgent need presents itself (and I'm certainly not wishing for that). I've spent two years organizing a spreadsheet of my finances. Two years! That would have been done in an hour or two in my old life. I also jump around between projects. I think part of what we are experiencing is our brains letting go of the laser focus and relearning a more generalized existence, but another part is that we have a completely different view of what really matters in life. Frankly, the movement of autumn leaves outside my window means much more to me now than a spotless kitchen.

Oh, and I've got boxes and boxes of pictures to sort through, and I will one day. No rush. Time to smell the roses (or at this time of year the bonfires).
 

affected

Guru status reached
Joined
Apr 26, 2013
Messages
12,696
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
AU
City
lala land
Beautifully put Becky.

I met my older sons new partner on the weekend. Her sister lost her husband suddenly and she took the conversation there. She was really upset with the way her sister has coped (or not I suppose) since the loss. I asked how long it has been and she 3 years and I said "Oh still very raw and fresh that has not been very long!" She looked a bit shocked. I know for others that seems like a very long time.

When she said "I just want my sister to come back", I didn't feel quite comfortable enough on the first time meeting her to say - honey she is forever changed, don't put that pressure on her, she won't come back.

But that is the truth - I know in that first year my friends were watching for 'me' to 'come back'. I knew I was a different person now and I walked away from some people. People who were not there when Chris was here, but were now ready to go back to where things had been before ALS.

This doesn't always have to be a negative, we can grow and become more as we deal with the grief. But we have to grieve our own way.

Those boxes of photos will wait, funny how our perspectives have changed isn't it?
 
Top