Time to reflect

[Barbie]

Hey everyone. like this thread a lot. so let me tell you what is going on with me a year and a half in. It seems like so much longer that a year and a half. I feel like he has been gone for several years. I think I am recovering very well, but still have bad moments. I am happy very happy over all. but I think about my Lonny every single day and sometimes several times a day. the first 9 months I couldn't get ALS Lonny out of my head and then it switched and I remembered him healthy again. I realized about 2 weeks ago that every time I think of him now it is ALS Lonny again...

I am selling my house, the one we built together and raised our family in and he died in. I love that house but cant wait to be rid of it. I am not living in it now, and every time I go over to pack I end up sitting on the couch or taking a nap and feeling down with no energy to do the packing. I have been packing the house for 6 months as we lived there for 22 years together. one evening I found a box of mementos in the attic. in it was all kinds of family letters. a big pile of letters an old boyfriend wrote me before Lonny and a big pile of letters that Lonny's old girlfriend wrote him. only a couple of letters from him to me. amazed to look at his handwriting. thinking about his hopes and dreams so many years ago. I sat there and cried myself sick that night!! (not because of the love letters--just the whole sadness and mess of everything.) I have had friends come on different occasions and help me pack since I don't seem to get anything done. Honestly when I l eave that house I feel like a weight is lifted off me. When I am at my new house I feel energized and excited and able to think about projects.

Christmas number two wasn't bad...I thought of him and missed him and was a little sad but nothing like the year before. Valentines was bad--I was listening to Pandora and it seemed like every song that came on was one that meant something to him or me. two of the songs from his memorial played back to back. coincidence? I think not

so the big thing is I started dating. and I am in love. I can not even believe it. but it is weird--In many ways I believe that Lonny had a hand it in--there was so much suffering for so so many years on my part just like his. and I know he loved me and wanted my happiness even if he maybe wasn't all there or cared at the end. my kids are ok with it and are happy for me. they like the guy a lot. Lonny's family met him and like him. and they are all for me dating and behind me 100%. still I feel a little guilty about it. like I should not be so happy. even if the happiness is tinged with a little sadness. and I am afraid and think about what if--no not what if but when--this guy gets sick. what will I do? I am not afraid of the dying but the run up to it. not even afraid of the run, but just not sure I can suffer again and care for someone again and lose them again. does that make sense? he is divorced so he doesn't quite understand that. but other widows and widowers do. and on top of all that, I am embarrassed that I feel so happy and lucky.

I want you all to know that I think of you guys often and how much this forum meant to me back in the day. I hurt for the new members and wish this disease was just a bad dream for all of us.

anyway--hugs and kisses to everyone!

 

[gooseberry]

It is great to hear from you Barbie! Friday is the 1 yr anniversary of Steve's passing. It has been a sad, difficult, exhilerating, wonderful year. Kind of hard to explain but Julien and I are getting thru the crap and moving to anticipation and happier times. I surprised myself how much I laughed the other day. It is odd but I didnt laugh for a long time....not sure I smiled much either. Glad to be getting back to me.

 

[affected]

Wow amazing to see your post Barbie. I can't believe it's been 18mths for you and a year for Steph. This last year or so in particular has just blurred and flown by.

I hope you get that house sold soon Barbie - it's very strange how the grief can make us procrastinate about things we want to get done. You will maybe find you deal better with a lot of fears once that is done. Maybe not, let us know!!!

I get your fear totally. I can't even imagine taking the risk on a relationship still. I am open that if someone came along and it felt right, but I can't imagine taking the risk anyway.

I'm approaching 3 years and can't believe it.

Steph I remember finding myself really laughing at times in that first year and feeling amazed at how it felt, then the little rush of guilt, then telling that guilt to go take a hike. Guilt really has no business in our lives!

 

[Barbie]

yes it is exhilarating to laugh, especially in the beginning after such a long time of no laughing. Yes, I use to laugh with Lonny when he was sick, but not that happy belly laugh that normal people have. when it happened again, and when I felt happiness again for the first time, and when I caught myself smiling again, it was so amazing!!

 

[gooseberry]

We are staying in our house but have redone a lot of it. Redone meaning painting, different homey things, vases of silk flowers, etc. We had to make it ours and jot dread opening the door. No one understands it but Julien, myself, a couple other people.....it is okay. We are here and I dont believe our pals would want us to be unhappy.

Joy, laughter, happy anticipation of things to come are becoming my norm. It is quite a change.

 

[gooseberry]

I am totally embracing the "if it brings you joy and happiness, embrace it. If it aggravates you, cut it out of your life" Simple words but oh how they change your life.

On the weekend of Steve's anniversary, the crazy sister sends messages to my son. He feels guilty and thinks he should see her. She cancels on us. Really????? To your nephew who lost his dad, really???? Julien says he is done with her.

 

[affected]

wow, people just never cease to amaze.

Definitely one to cut out, especially for now. I'm so sorry for Julien though, it's hard watching crap hands being dealt to our kids xx

 

[gooseberry]

They say people with autism have difficulty figuring out people. He is one of the best at it. For a 14 yr old, he sees thru all the crap.

 

[KatBee]

Hello friends,

I'm in the holy-crap-its-almost-a-year-meltdown stage of things... and that's how I found myself back on this forum today, and so grateful to see your friendly names and images again. This is an incredible community. I am so grateful for the energy that you all send out so generously into the universe.

I have to say it's a relief to see that others are experiencing a ramping-up of sadness at the nearly-one-year mark. I've been feeling like I'm losing it (all over again).

After my mom died, I kind of fled from the whole situation -- dismantled her apartment, moved across the country... and it's only more recently I've been able to get back to some of the work of addressing what I went through. But it's hard. And it's hard to find time, energy and support to do that work. I feel very alone with it still, and I can't tell you how comforting it is to rediscover you here, and to feel like I'm not actually the only one wringing myself out....

Just after my mom died I was accepted to medical school -- so certain subjects really send me back to the world that was ALS and caregiving. Learning about how the body senses oxygen and CO2 levels and regulates them (or doesn't) for example, meeting a patient with Guillain-Barre Syndrome (also a paralyzing disease with similar symptoms, but usually reversible), visiting a hospice, discussing health care provider burnout, adjusting the hospital beds in clinic, researching CCAC (that's our local funding/distribution agency for homecare and other services)... not to mention discussions of end of life, palliative care, and assisted dying.

I was wondering... when I think about my experience trying to look after my mom ad the impact it's had on me... the descriptor that feels right to me is 'trauma'. People keep telling me I'm grieving, and some of that's there, sure, but it just doesn't seem to fit with what I feel I went through. I can't be the only one who feels traumatized by the nightmare that this disease can bring. Do any of you have suggestions about how to describe this to other people so they understand a little better? Does anyone have any resources (in addition to this forum) that have helped? I don't know, online programs or books or something? I am seeing a counsellor periodically, but I think I have trouble describing the traumatic aspect of the experience, that's in addition to the grieving. And I really feel like it's taking a big chunk out of me, if you know what I mean. I'd like to start to chip away at it more actively.......

So much love and respect to you all,

Kathryn

 

[lgelb]

Hi, Kathryn,
First, thanks for stopping by and congratulations on getting/staying in medical school. I have an inkling of the topics you are hearing about and your sometimes visceral response, since I continued my health care career after my husband's death, returning to a neuromuscular focus.

I also get what you are saying about trauma. No other years-long nightmare is comparable. With dementias, the patient is largely unaware of the suffering of others on her behalf. With terminal cancer, the patient has insight but the journey is to death, not paralysis. Etc.

If it helps, and I am sure you've read other accounts here, I am better now at 2y out than I was a year ago. There's no way I could have been in school that first year, so you have my complete admiration. I have never had therapy, antidepressants, etc. so I don't know what that would have meant in terms of "chipping away" the "chunk," but I think it does melt day by day. I suspect one of the major reasons it's melting is that I have the opportunity here and in my day job to help PALS and other people with fairly bleak lives/prognoses. You have that same opportunity, more so in your upcoming practica and beyond.

So I'm not sure you need to chip purposefully as much as don't avoid or swim in the ironies and when things synch up too well -- just swim through and you will come out a better person, as will those whom you help.

Best,
Laurie

 

[Neilswife]

Kathryn,

Congratulations on being in medical school. I am glad you mentioned the traumatic aspect of this disease because it is traumatic and that is something which is very hard to come to grips with and I don't think the general public can understand what any of us have gone through. I wish I had some suggestions for how to describe this to other people, but I don't. I think it is hard for others to understand because it is a cumulative thing ... it isn't just one day you saw something and it was traumatic. Each of us has endured a heartbreaking experience. It is hard for others to understand the cumulative experience of ALS. I can after 8 months offer a suggestion on how to manage the grief ... go with it. By that I mean, don't run from it. I think each of us has to work through the experience in a conscious way in order to end up in a good place. Pay attention to your life and when you feel that something triggers your grief, experience it. I have not reached a good place yet, as it is too early in my grief, but I believe I will get there someday.
I admire you for being able to work in the medical field and make a difference in people's lives.

 

[gooseberry]

I can say I work hard to keep things under control emotionally. Steves anniversary was March 3rd and my sisters March 10th. For 10 days I barely slept, had meltdowns and panic attacks, and relived everything for both of them. Trauma is a great way to describe it

 

[affected]

Neilswife great to hear from you.

Definitely 'go with it'. I've learned to let myself stop and fall down when I need to and move through the grief and allow myself time to recover from the trauma.

Heading to 3 years and I still have to just let myself do this in whatever way I need.

 

[gooseberry]

Absolutely, that is next on my list. Learning to run with it and not fight it. Not an easy lesson for me to learn

 

[affected]

Steph that has been a huge one for me and I think for a lot of CALS as we are in such a mode of heightened awareness and looking out for disasters. So letting go and saying right now you can just recover is NOT easy!

But here we are, and we are learning