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Laurie,

All our legal paperwork is in order. I can't speak for Lenore, but we still have things that are holding us back from living life to its fullest. Some are from a not so accessible world, and some are somewhat self imposed.

For example, DD got her first apartment. Her job is in one of the most expensive areas of the country. The choice came down to renting a first floor apartment in a scketchy area or a second floor condo in a safer area. No brainer, but we can't visit. DS is at college and lives on the 3rd floor of an older dorm with no elevator. The school makes accommodations for students with disabilities, but cannot make them for students with disabled family members. Friends have been so gracious to invite us to celebrations of various events. Most have been held at their homes. They don't own accessible homes, so we haven't been able to attend.

DH is wheelchair bound and can no longer stand. He will not travel by plane. Our last flight, when he could still walk a short distance, turned a 2 hour trip into a 12 hour fiasco, so he is not willing to take a chance like that again and I can't blame him. He also has lost the use of his arms, so I now feed him his meals. He will not go out to eat because he feels like he'll be on display. I can't ask him to put himself in a situation where he'd be that uncomfortable, so we always eat at home. These limitations are self-imposed, but he has lost so much, I will not push.

I'm not looking for grand adventures anymore. Just what most would consider a "normal" day would be a blessing.

Sorry, didn't mean to hijack your thread Lenore.
 
Jersey, I empathize as to lack of accessibility (my husband wasn't able to visit my brother's home for lack thereof) and the social aspects of being out and about. So I wasn't minimizing those, just noting one kind of checkoff possible for newbies.

It's undeniable that there are a lot of "self-imposed" limitations, equally or more frustrating as the limits of something like architecture.
 
Thank you Laurie, we do need to do that and I need to get passed the denial and anger and grief that not doing it implies.

So far as going out, Brian has no desire to do so and I respect that. It’s everything Jazzy said and then some. He is fine with being at home. It’s not always a symptom of depression or whatever, sometimes it’s a choice.
 
I get the part about being content staying home. (Downside is that I'm not content with it ;))

My boyfriend weighs the pros and cons of going out and if the payoff isn't great, like last week seeing a favorite band, talking with the musicians and getting a free shirt, he's more inclined to not invest so much energy and rather stay home. That's where friends are the best thing in the world. They stop by, watch shows with him and sometimes that gives me opportunity to slip out to go swimming or see other friends. It helps me that we used to go out on our own, both being pretty independent. We were never clingy.

And yet it breaks my heart that now that it's finally warm enough to sit on the patio of restaurants (because so very few are accessible here) he's no longer able to eat. That was my promise all through winter while tucking him into blanket and gloves: in spring we can go anywhere with just a shirt on and we'll try all the restaurants in the area we moved to. Well... ALS was quicker again.

Again I try to figure out what we need to enjoy NOW because there won't be a later. In fall I told him to eat a lot of potato chips, that was pretty spot on.

How can one learn to look beyond the most recent loss, guess what's vanishing soon and enjoy that without being prematurely sad about the inescapability?

I find that reading about others who are farther down the road (or on another road altogether) helps me focus on everything that's NOT a problem. My PALS has no cramps and not spasms, pain is manageable, he sleeps tight, he can hold his head fairly well and there's still a naughty twinkle in his eyes. Others might look as his journey, how he's become a quadriplegic in only a year, how he lost most of his speech in the last couple months. You could either see the horror of what's to come or see what your PALS is spared of at the moment or might never have to deal with.

I sometimes am very much surprised by what other PALS can still do years after diagnosis and it hits me hard. Most times I don't even envy slower progression. I feel I'm doing pretty well as a CALS. I also feel that I won't be able to do this for a long time although I get a lot of help.

Lenore, I'm just rambling here. Wanted to post in this thread all week and just couldn't muster the energy and the right words. Thank you for sharing how you feel. I lost it too a lot this week. But I never ask why. There is not why. Just dumb luck, tears and a tendency to somehow go on anyway.

Lots of strength to all of you!
 
So fast Wish, I’m sorry but you have a strong and beautiful attitude.
 
I've been rather absent this week, but wanted to just say there is so much depth and truth in this thread. You are all so spot on and I hope the honesty is liberating as you do the hardest thing you will ever do xxx
 
Lenore and wishmobbing- I sit here and read your words with a big painful lump in my throat as it brings me back. Tillie is right...you are spot on. Thank you both for sharing and my hope is that in doing so it feels a bit cathartic for both of you and helps others navigating this beastly disease. Your PALS are both so very lucky to have such strong women.
 
Strong until I lose it, that is :)

I use to gripe that ALS was with us and with me every single moment. Now I don’t gripe because I am
Accustomed to its presence. That to me is both a relief and a sadness.

We just cannot be this disease. If we are, then we are the Beast itself. I talked to a CALS recently who lost Vet on a farm and has become a big target shooter after a lifetime of disinterest in the family’s hunting. Poor thing, out there trying to shoot the beast just like my dream.
 
Lenore, you're so right. We all should have club shirts saying "Don't be the beast, beat the beast!"
 
So it’s getting really real around here. The Doctor okayed Brian for hospice. Yes I know and appreciate that it will get us more help. I know and appreciate that he could spend 18 months with Hospice or even more, many ALS patients do by getting extensions every six months.

They are coming to our place Tuesday to set up initial paperwork, etc. Tuesday is Brian’s 68th birthday, which makes us more fortunate than many here. He is two years from Dx as of June 30th, so what could we expect I guess.

Brian’s arms are getting weaker.henonly uses the walker to transfer now. He chooses to live in his recliner when not in bed at night. I still have people with him just a part of each day while I work. We have a groovy special urinal type he can still use that has a bag that takes a day to fill and for bowel He can transfer to the toilet in the morning before I go, I wipe and flush and navigate the transfer. Obviously, having people just a part of each day will need to move to all day soon.

I changed supervisors at work and my new one scares me. His main concern when I explained about my husband seemed to be making sure I was at work enough ( I said that I sometimes leave a few hours early for appointments related to my husband’s ALS, and that my former boss did not expect me to use PTO for that as long as it was less than 1/2 day. He said I needed to make up that time in the same week. I am a salaried person and never work less than 40 and rarely less than 45 hours a week). In addition, it was our first face to face meeting and he mentioned that I had disagreed with something negative on my last review. My last review was good. I actually am concerned he wants to push me out as a liability to the organization because Brian is sick. I am meeting with his boss Monday.

Oh, and for double your joy, said new supervisor when told my husband has ALS said “Oh, like Lou Gehrig’s? The ice bucket challenge?”. He also noted that “ He had his kids and I have my husband” at home. Yup, because your dying husband in your living room is just like having kids who are going to grow up and have lives. No words.

Anyway, that happened Thursday and I am considering my words carefully for Monday. I feel much better than I did yesterday about that part.

Hardest time of my life so far, no peace on any front but I will persevere. What else can I do?
 
Very sorry about Brian's progression and your new supervisor, Lenore. I know you will be calm, dignified and quietly emphatic on Monday. Bring a copy of your last review to signal you're playing for keeps, and remember that the ADA prohibits treating you differently than any other employee based on your "association" with someone with a disability.

So if another employee was or would be allowed to stagger her 40 hours for any reason other than Brian's medical appointments, like if she had child care issues or her car was being fixed, then by law the same flexibility must be provided to you. There should also be something in your employee manual relative to the PTO requirement for <1/2 day for exempt employees, but it's moot if the company has been abrogating it.

I'll throw in my own clueless person story. Someone asked me yesterday if ALS was neurological and I said yes. She then said, "Oh, it's like Parkinson's, then" and then tried to equate her mom who has PD with my husband's having died from ALS. Uh, not seeing the analogy there.
 
Big hugs Lenore, Laurie gives some good words there about standing up for yourself the right way - a copy of that last review is really important so you have it on hand if needed. Even if you don't pull it out, having it with you is critical.

I know that every step down the path is another in the 1000 deaths we face and grieve and while we find all the positives, no one can be excited to register with hospice - I get it!

May I also throw in a clueless comment - yesterday I was talking to someone I'd never met. I told her I had cared for my husband with the terminal illness MND. She said, oh yes I've done that many times. I was a bit like what? Oh I was a palliative care nurse - what you have done is the best experience you could have.

Would you believe I smiled and nodded and let it, and her, go by?
I've come a long way that I did not even well up in tears, or say something inane back, I just smiled and knew I did not have to go any further with this person.

Some people who should get it never will, and some surprise us with compassion and understanding.

Please let us know how you go with this new boss - he is obviously completely clueless to just how stressful his words have been for you and what is actually going on.
 
That is a lot of realness for one week, Lenore!
I wish you infinite strength and patience to deal with all that.
 
Thanks Tillie, Wish, and Laurie.

I don’t get the cluelessness. Maybe five years ago even, but ALS gets a lot of publicity these days. It’s not Parkinson’s, and no one else is Steven Hawking.
 
Lenore, hugs to you and Brian.

Despite publicity about ALS ala Stephen Hawking and the ice bucket challenge, many people are clueless and just don’t get it.

When I told my dental hygeinist, she not only basically ignored me, she proceded to tell me about her recent root canal procedure.

I guess the topic of ALS must catch alot of people off guard. Either they don’t know much about it and don’t know what to say, or they know something about it and are perhaps uncomfortable responding. It’s what I call “the leprosy effect”. Unfortunately, it just adds to our emotional isolation.

I hope your boss gets a clue and I hope the hospice service provides you and Brian with needed services and comfort.
 
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