Hold on Tight...

Hugs Lenore. Keep strong.

Today, 6/30 is exactly two years since Brian’s diagnosis. Exactly. I knew it was coming, he was not as sure but come it did. After the diagnosis and some clinic stuff we went to lunch and I went and got my nails done and told our manicurist. There were no tears that day, only some questions. I think we had both been through a big emotional wringer in the diagnostic process. The final word was actually easier. The next day, July 1st was my birthday and we met friends at a restaurant and ended up telling them too.

Fast forward two years, I met with a group of friends today at a restaurant. I wore the same dress I wore the day Brian was diagnosed. It’s an old dress, has some wear and tear. Wore it on a catamaran in Hawaii four years ago. It was a nice brunch, glad I went. Good to see people. At the end of today, I will Bag this dress up and take it to the trash outside. I don’t want to see it again, but glad I wore it today.

I think the whole thing is my “screw you “ to this disease. You can’t break me. I’ll wear the dress, meet friends, heck tonight I’ll make a nice dinner Salad for myself after I purée his food. I’ll make myself a nice drink. Maybe in the months to come I’ll lose a little weight. Maybe in stolen moments I’ll work on my writing. Maybe I can’t fight you, maybe there is not one thing I can do about the theft of the love of my life and the center of my soul that is Brian. Yet you can’t break me.

This will never be okay, this will take Brian and has already changed me in ways I am sure I have yet to realize. Brian has had as he says “a good run”.ALS can’t change that, and it can’t break me.

It won’t break you.
I wish you a happy birthday, Lenore.
You have an indomitable spirit.

It's officially your birthday here already. Let today be a celebration of the spark that will always be in your eyes. You're a true queen and of course the birthday girl!

I admire your spirit Lenore. No, ALS will not break you - it has robbed you and Brian of far too much already. I am glad that you are really - indeed finding ways to FIGHT ALS! No, ultimately you can't win! But you are putting up an admirable fight in meeting the everyday challenges, keeping your spirit up as much as can be expected, and giving Brian a continuation of "a good run" ...... as much as you can! I hope you found a way to have at least an o.k. birthday! How I wish many of us could find a way to be with one another on such occasions!

You are officially my hero Lenore - love your attitude.

I really liked imagining you in that dress, then bagging it up and out it goes.

I admire your spirit, you are an inspiration, Lenore. I hope you can find a little time for yourself on your birthday today.

Thanks everyone. Glad to have Brian with me for one more birthday

Happy Birthday Lenore! I hope you're having a good day.

Today is also my DH, my PALS birthday. Asked if he wanted to go to a ballgame today, but he said no - it's to dang hot here. (Probably a good thing, as he's watching on TV, and they're now going into the bottom of the 12th!) Burgers and homemade potato salad for our celebration. Maybe a beer. Not what it used to be.

Happy Birthday Lenore! I hope you were able to enjoy it.

Hugs,

It was a pretty decent day. I saw my mom
And that’s a whole other story...

Tonight my husband thought up a nicer route home for me after following my location from iphone. I drink Vet along another sweet parkway. No longer able to feed himself or walk, he is thinking of me.

I am a very lucky woman.

Your Brian is definitely a very sweet man Lenore. I am so glad that Brian has told you he has "had a pretty good run". I'm glad he feels that way and has said so to you ...... He sounds like a very thoughtful and protective guy!

When we married in 2010, I was 44 and he was 59. As a joke, I would say our song was Taylor Swift’s “Love Story” - the one with all the lines about Romeo and Juliet

Our grown up song is probably David Bowie’s “Hero’s”. I really believe only a few people get that.

When it’s not Brian stuff, it’s Mom stuff.

My mom had her big spinal surgery three weeks ago tomorrow. She is 82.5 years old and mean as an “h” and an “E” with double toothpicks. She always WAS, it’s just now to a greater degree.

My mom has been pretty insistent in her mind that she is going back to her apartment when she recovers from all of this. She was in transitional care when her leg gave out and they thought they could fix it with PT. When they realized they could not, she went to a long term care and then into a major surgery. After that, she went to this transitional care with better PT facilities and has maintained the idea she is going home.

My mom believes her only issue is due to her spine she was not able to walk and surgery will fix all that. I know this spinal fusion was a big deal and frankly I wonder if she will even succeed in walking again. She also has a lot f overall weakness has been going on for a few years. That, and the 36 hours she spent on the floor in her apartment after a fall last year really took a lot from her that I don’t think is ever fully coming back.

It’s a sad story, a harsh way to get old. She remains in huge denial about so much. Now just less than three weeks past the surgery the transitional care is already saying Long Term Care is her future, which I have figured. She will be rehabbing another 6 weeks or so.

What I will need serious help with is a conversation with her about Long Term Care. I need Doctors, Social Workers, you name it. Help, she is going to go nuts and say she just wants to die and accuse me of “sticking her in a home”. Add to the joy, she is nasty and demanding with staff and always making up things to accuse them of - like not answering her call light for over an hour. She has said the same things about three transitional and one long term facility.

So, you can imagine how these folks feel about helping her. Man I hate this.

Lenore I’m sending major hugs. For those of us going through this dual caregiving role at one time, it makes things twice as tough. I wish there was some way to help her see the positive of a LTC situation.

I have to say I’m a tiny bit fortunate that my folks realize I can’t be there for them due to Brian and are willingly moving. However, the whole process doesn’t really make things much easier as we still worry.

I am sending good wishes, that you Mom will realize that her apt isn’t appropriate for her when her walking doesn’t return as she hopes.

Hugs,