Hold on Tight...

[affected]

Get lots of good quality, easy to grab and eat meals and snacks too.

You won't feel like making food, but you will need the energy. Some good protein things that you like a lot are much better than sugary things. If you get stuff you really like you are more likely to eat them.

I didn't do this and I think I ate peanut butter on toast for about 5 meals straight because I didn't want to leave him for long (even though I could see him from the kitchen as he was set up in the lounge room), and I didn't really care about eating, certainly was not going to cook.

I think on the third evening the girls came and casually said, oh we brought you some leftovers from our dinner (I can't remember now what it was, maybe thai food) ... I was ridiculously grateful as I realised that this was the first actual meal I had eaten in days.

 

[wishmobbing]

Lenore, peaceful and with a plan. Happy to hear you're on the same page.

 

[Lkaibel]

That’s great advice Tillie. I can get stuff delivered here any time but with done planning I won’t just be having trashy food delivered.

Even now why Brian is still eating (very lightly) and drinking, it’s made a big difference to have no tv and all music. Changes the energy at home big time. I ordered the air mattress for the living room too. That will be here Monday, about the time I want to stop sleeping upstairs.

Now, after lunch today a “final” trip to see my mother with clean laundry in tow and some odds and ends. I’m telling the staff I can’t cone back for likely two weeks and asking they do laundry there.

Tomorrow, crazy as it sounds I’m seeing a movie with a friend and another friend is staying with Brian during that time. I need to see the world a little once more in a non work way before We start the VSED.

The current plan is that I work Monday-Thursday to tie things up and pass things on, then out until April 1st. VSED to start anytime Thursday- Monday the 11th. When that starts, I won’t leave home for any reason.

I need to get a the body donation form sent over to the University today. Hopefully they can file it in time for Brian’s passing but if not simple cremation it is.



I am having a gathering in a restaurant private room rather than a funeral for Brian. He is agnostic and far preferred I gather the tribe to eat, drink and talk memories rather than be in a funeral home.

There are some things I wish - and thought I had more time to plan out but so be it. Life did happen while I made other plans.

 

[Narrowminded]

Lenore, one tip on the air mattress, make sure you cover it good before the bottom sheet, stick a couple of blankets under that sheet. The air is room temp and you will feel very cold sleeping on it if there isn’t some insulation between. I’ve had this happen and how I know.

I am right here with you, holding your hand as you go forward. It’s going to be a couple of very intense weeks. Please know you can reach out to me at any time.

Hugs

 

[JimInVA]

I find that I am so much more emotional than I was even a few short years ago. I just had a tear roll down my face. It surprised me. But I realize that I have a soft smile upon my face... so I know that it is a happy tear. It seems as if we're all connected by more than just forum posts. I can feel the love you and Brian have for each other. And I can feel the love and care that we, here, have for the two of you. It is comforting.


My thoughts are with you both. My very best...


Jim

 

[Jlynn]

Well said Jim. I feel the same.

Thinking of you Lenore and holding your hand virtually as you go through this. we are all thinking about you both.

 

[Buckhorn]

Trying to hold & hug you my CALS sister, from far away. I am glad that you are both feeling a sense of peace wash over you. There comes a time for all of us PALS/CALS in the process of dealing with this unbeatable foe called ALS, when we know in our hearts that to prolong things any longer will only mean greater sufffering. I think that is why you are both feeling a kind of relief/peace in these days proceeding formal VSED. You & Brian have both dealth with ALS with amazing love, courage & respect for one another. That will, never, ever die! I am holding you both tightly in my heart!

 

[MarieLaure]

Lenore through all the days when you were generous enough to let us know what you were going through I was wondering how can one remain so organized in that storm of pain. Now I have a vague idea that you kept and still keep the wheel firmly in hand so that both of you can now sail through together in a peaceful way.
Vibes to soft sea across for you two.
And hugs

 

[affected]

Beautiful Lenore - you do whatever you need now, your way, the way that oozes you and Brian and you are on the right track xxxx

 

[Lkaibel]

This morning Brian said “You’re not fooling me. I see you crying in there.”

Blessed to have spent these years with someone who could always so clearly see “in there”.

Thanks everyone. On a practical note, thanks for sparing me a cold bed Sue. I’ll work the air mattress the way you said.

 

[Narrowminded]

Lenore I’m so happy I could ease your comfort just a tiny bit during this time. Holding you firmly as you move forward.

Hugs

 

[NothingButLove]

Lenore - Just wanted to say you and Brian are making all the right decisions. Tapering off food and palliative sedation is the way to go. Having no previous experience, my wife chose to be awake during the process. Also, she basically went from fully eating and healthy to VSED. She wanted to get every second out of life even when trying to die. I have total respect for my wife but she took the hard way out. Jlynn and I shared a similar experience concerning "terminal agitation". Our hospice nurses apparently forgot they had medicine to counter that. If I could have one day from the 53 years of my life erased from my memory, that would be the day. You won't have to deal with that having chose palliative sedation.

I'm sorry you and Brian have to go through this. I give both of you all of my love...

Rob

 

[Jlynn]

Oh Rob...I totally get it. I would erase that day as well. I wish I knew then what I know now.

Lenore...It sounds like you've got this. Your such an inspiring caregiver and your Brian is so lucky to have you. And it's quite ok for you to cry. Whatever you need.

 

[affected]

I hope your time at the movies was a great respite and time out for you.

You've got this, and we've got your back.

Of course you are crying in there, but that is love in action xx

 

[Lkaibel]

This Forum has just been so amazing, I have no idea how I would have gotten through these past 2.5 years without all of you.

I am finishing up my work days before leave this week. I came to a few more odds and ends conclusions the past few days.

The day Brian leaves this world, I will change my wedding ring to my right hand. Immediately after notifying everyone, I'll change my Facebook status to widowed and my profile pic to a solo pic. I will have his memorial gathering as soon as possible. I will post his death here in the In Memorial section, not on this thread. That's how the mods will know it's time to close this thread.

It's going to take me years to deal with the grief, and I am honestly sure I will never remarry. Perpetual date maybe yes, but married or shacked up no. I'm keeping this last name until I die, thanks. HOWEVER, I never, ever want to be a professional widow, all about a dead man and times past. Humans are like sharks. We move forward or we die, if not physically than spiritually. I know you can't jump over grief though, you have to get through it. I plan on joining a support/widows group. With all that's happened in my life anyway, I'm willing and ready to cry Uncle on needing some help.

Back to work for now. Just wanted to say thank you and send love to all. This thread has some time to go for sure. I'm going to be checking back in and sharing process not just for myself but because I think it may help others. Brian plans to stop eating altogether on Sunday. He has already greatly reduced consumption, including going about 1/2 on fluids thus far. We have added more Oxy and Anti Anxiety meds too.