Not open for further replies.


Very helpful member
Forum Supporter
May 9, 2016
Lost a loved one
So, here I am exactly one week out from my husband's death. It was really only after he actually passed that I have started to realize the absolute hellfire we went through together.

There was beauty, love, and moments of joy for sure. I am very sure I never felt closer to or loved another human being more.

Now, I sit just a week out. I burst into tears on occasion (okay, daily!) but I am also busy as all get out and actually enjoying some friend time. I am also wrangling with a home refinance (they've been lovely, but its an adventure) and all the practical matters. Looks like I have to get some trim and door frames painted before close (had the inspection today).

This week I went to the doctor and I just found out today that my blood A1C (test for diabetes) is 6.5. That number is the very beginning of diabetes, just past pre-diabetes. If, after three months of diet and exercise I tested with that same number or higher it is officially diabetes. I am WAY to heavy now and have been eating garbage at will for many months. Then, stress also can raise blood sugar.

However, the Dr. says three months of better diet and exercise, which is long, long overdo and we will see. It is also of course a big change at an intense time in my life. I figure God does not want me to come home from work every night and drink wine and eat trash :)

Then I just happened to realize last night that Brian left no beneficiary for the Health Savings Account. U.S. Citizens will groan along with me on that one. I have to talk to the attorney because not ONE single other item in the estate is probate fodder, I'm hoping we can keep this out some way or how as well, but who knows.

It's more hassle, not a disaster but geez...

I'm off to hit the stationary bike. I'll install one of my new echo dots down there for music. I'll be able to go do that mornings before I go to work when I start back on the 1st. That would not have been possible before.

I AM glad I didn't get the possible diabetes news when I was caring for Brian. All those deviled egg and prime rib deliveries and desserts felt good, even if they were no so good for me.

Glad you are getting the chance to take care of yourself now. You did what you needed to while Brian needed you. Don't beat yourself up about it. I am in the same boat with looking after DH first and forgetting to take care of me.

Good luck with all of your new beginnings. Continued hugs, my friend!
I did the exact same thing while caring for Cliff. Honestly, I just didn't care about eating healthy. Pretty much didn't care about taking care of myself.

Now, I am heavier than I have ever been in my life and just starting to try to make better choices.

I am happy that you are getting started way earlier than I am.
Lenore my past year has also been a lot of bad food. For all the same reasons. We did what we had to do.

I will say what has really saved me is something quite easy, walking 10,000 steps a day. As you may or may not remember, most of those were done just doing laps around my house as going out was basically impossible. Just that very small change can do so much.

I’m happy to hear you have the bike out. I will tell you learning to get to exercise for ourselves after is harder than you think. I’m praying you can do so easily.
It’s harder because we are so used to jumping out of bed and into “the day”. It’s a mindset we need to break.

However, I am very glad you went for a check up and can head this off at the pass. I am very confident with some exercise and cleaning up the eating, you will do well. I too am still trying to get a good hold on my eating.

Wow Lenore, I just left a post on Sue's thread that echoed your first paragraph here. It took me longer to realize that processing that "hellfire" is what's going on now. I started trying to go off the Lexapro too soon, and have halted that plan for now.

I'm so glad you had your A1C checked. Given the bad food, stress, and lack of good exercise, I suspect that you will be able to turn this around if you can turn all of that around. Comfort food and wine are not helping my weight issues either. I've recently started substituting Pellegrino for the alcohol in the evening, and that's making a difference.

It sounds like we are in much the same situation with the legal issues. With all Matt's careful planning, two jet skis and a boat ended up registered in only his name. The state of NC allows for an annual spousal living allowance to come out of the deceased's estate, so my lawyer is working to have them transferred to me in lieu of cash. Nothing else requires probate, so I sure hope this works (especially since I want to sell the jet skis and the season is upon us--now if I can just find the damn fobs for them).

Much love to you.
Yes Becky it’s so very different when we are “in it”. Now I look back on how literally overnight, Fall of 2017 Brian went from walking up the stairs to unable to sit up on his own. Sure, some of that was temporary (he sat up again) but he never walked steps again. Never.

In the moment, you have to deal with it, adjust to it. Now
as I look out from the window at the shed he designed and built from the living room with the floor he laid I think a monster broke in here and stole Brian. Before it killed him, it made him motionless below the neck.

Today is the Celebration of Brian. I hope one day when Zi think of him how he lived can be my first memory.
Lenore I hope that you were richly blessed by his Celebration.

I’m continuing to pray for peace and comfort for you.

It was a great gathering we had yesterday, truly. I was surprised by how many people came. A few I did not recognize since they were from parts of his life before we met.

I went out with friends last night, I was out until 2:00am. It’s been since before Brian was diagnosed that I did that and it felt good to be with friends again.

I keep seeing Brian in my mind now before he got ALS. It’s painful but I think it may be the start of really living with the best memories.

Thanks all.
If you only invest a fraction of the time you cared for Brian's health and invest it in your own body, you will have the looming diabetes turned around in no time. Just recently read an article on how much sane eating and sports helps with diabetes.

The celebration sounds great, especially the really late night.
I’m so happy the celebration was wonderful and that you got to go out with friends after. Those kinds of things are hugely important.

Random thought this morning- I have more freedom than I have had in years, I got a pleasent surprise re my husband’s pension survivor benefits yesterday, things are looking up for my refi, and my friends and coworkers are fabulous.

I appreciate all of it, and I’d give it all up for the time I have lost with him. Even being in the blessed widows club is still a widow’s club. All I want is Brian.
Happy to hear things are looking up on the financial front and that you have good support.

Sending huge hugs
We never 'get over' losing them Lenore, we just find the way to live with the loss xxx

Great financial news, money doesn't buy happiness, but it sure makes misery less biting!
Thinking of you Lenore!
I really AM blessed to be in better financial shape than I've ever been in my life after all this. My heart breaks when I read something like an ALS Widow facing foreclosure.

Mind you, all told ALS cost us a good 50K in ways big and small and that was in just 2.5 years. It remains true that in the United States anyway, the best things to be if you deal with ALS is wealthy - where you can cover all expenses with ease OR poor enough to straight up qualify for Medicaid, which can include even the cost of Home Care far beyond anything you will ever get from Medicare or the great majority of private plans (except long term care insurance).

Between those posts, its a festival of spending, and it ate at Brian that we were spending around 2300 a month on his home care, even with me spending every morning, evening, and weekend doing it alone. Me, I was just grateful to have the means but he and I came from different backgrounds in that way.

I go back to work Monday. I'm kinda looking forward to it, I think it's time. To me it symbolizes the true start of that second part of the journey. That, and I need all day contact with people that is not just whenever I choose it I think to get a tiny start on my "new normal", the one that I am sure will take years to find.

The "we" to the "me", what a concept. I am going to a group for widow/ers tomorrow morning. It's soon but meeting people is good. I went out with a work friend last night. Sunday I'll get things ready to go back to work. I'm slowly easing back into some of the "pre ALS" things. I grocery shop now, no more Amazon Prime deliveries. The Bite Squad food orders stopped, I am eating healthy now and they are crazy expensive. Next, the housekeeper goes to weekly and then bi weekly and then by June none. I can do my own housework now.

I can also now spend more time with my mother and tend more to her needs in long term care, which is good. I have made a "rule" for myself about weekends to come: ONE day alone is all fine and well, things to do and I enjoy it anyway. Not two though. Gotta get out and do at least one day. I have plans already for one week from Sunday.

Evenings after work will take care of themselves to a point. I work a lot, and my dog needs me at night for sure. That, and leaving work at 6:00 PM to come back at 8:00 AM does not leave a ton of time to dwell on much but dinner and a load of laundry and maybe a dog walk.The challenge will be of course no longer coming home to him. When I left the office for the last time before he passed, I thought about how I would never walk out of there again and come back to him. While he still could and for many years, I use to text him "On my way" and he'd text back "Yay!"

While I may seem very peaceful and accepting, I cannot for the life of me let go of his cell phone. I promised myself I will pry it from my hands at the end of the this billing cycle 4/16.

I am off to a day of out and about. The business matters are all quiet for the moment, and the sun is out.
Not open for further replies.