Hold on Tight...

Karen, tellingly Brian “jokes” about being a Leper. I feel that ALS for people who do understand it is like some sort of Medievil horror show.

I did my regularly scheduled check in with my truly fabulous Orthopedist (I have carpel and a questionable knee from birth) in March. He asked me what Brian’s first symptoms were and some other questions about ALS. I know from experience he HAD to have been at least a few patients first or second stop on the way to an ALS Dx. Yet you could see he, an MD of 35 years practice knew little on it and was sort of horrified by it besides.

I compared this to a few years ago when I told him an uncle had a brain tumor (not CA but in a dangerous location). He chatted on about all they could do now, where to find the best people, etc. My uncle is fine, btw. Ten hours and two surgeons but just fine. Oh for the day.....

Wishing you all the luck on Monday. Maybe you should bring one of the YouTube videos of a person documenting their ALS journey and play it for your new supervisor. Maybe then he'll have at least a bit of a clue.

Lenore, huge hugs to you.

As for a clueless story it would be my SIL, Brian’s sister. Her comment was while her father was dying from cancer. He went tfrom being lively with family, while in the hospital to gone in 36 hours. While sitting at his bedside while he was calm, relaxed and in a coma she said something about emotional and I said something about watching my husband die in front of me for 12 years, her reply, but not like this? While no one wants to lose their parent, 36 hours was rather a Walk in the park. Of course no death can be compared and none are easy. The idea behind her comment was basically it wasn’t bad emotionally to watch your husband die a little more each day for 12 years. She basically discounted all we have been through.

I was fortunate to be able to be at my FIL’s bedside and be able to FaceTime so DH could see his Dad one last time. That was so hard. Then at the funeral I had to read a statement from Brian about his Dad and their relationship. That was excruciating. Brian had to attend the funeral via video. All the while my SIL could not wrap her mind around that being tough emotionally

I agree, you need a video to show your new boss exactly what ALS involves. The people doing the ice bucket challenge were a huge help but extremely removed from the reality of what ALS really is. He needs live pics.

When meeting other his boss, I would mention his rude behavior. Nothing calls for that toward any employee for any reason.

Prayers coming your way for a good resolution

Can you believe some people? Here we are dealing with an illness that makes us envy those who deal with sudden deaths, and so many people just cannot get it. I think they don’t want to. Pretty intense, the body going before life itself and taking anywhere from 6 months to many years to do so. Thirteen years. I’d be insane by then.

The work thing went well. One of the first things out of his mouth was “how can we support you?”. It sure would have been nice to hear that last week.

So the offer of support was from your supervisors boss? What a relief!

Yes it was. My boss is newly promoted and had my same title before the promotion. You fill in the rest.

Lenore I’m thrilled to hear the thing with your supervisors boss was understanding and wanting to support you.

I get what you meant about who the new super is. Trying to flex muscle to prove he belongs there. Well enough complaints and it won’t be long.

Hope you can have a more relaxing week after getting through that whole ordeal.

Hugs,

Sue

Lenore, have you selected your crown and title? I've got a title for the new boss, but we'll leave that alone... I'm so relieved about the support from your bosses boss.

We all know that each family's route through this mess is different, but those of you who find ways to work and be the caregiver have my special admiration.

Big hugs,
Becky

Lenore, I've been thinking about you and am happy that things went well for you!

Thank you both. Becky, it’s nothing compared to being a vent Goddess. That would kill me outright

Brian is officially hooked up with hospice now and a kit came. It’s got Morphine and various drug suppositories and other random goodies. It’s a rescue kit and if you ever needed it you call them to administer it. It gave me a jolt. More realness.

Lenore,
We got the kit too at the beginning of hospice. There was a pill in there that said it was for hallucinations. We both looked at it and wondered why he would need it. What I didn't realize was that at the end of life extreme agitation and hallucinations are common. By the time he got to that stage the pill had been forgotten about and hospice never mentioned it again not even when they left us that night before he passed. He died early on a Tuesday morning. Sunday night, the last night he was awake was AWFUL! He couldn't get comfortable and was very agitated. For 3 hours I had to keep moving him to try to get him comfortable (which never happened until he finally feel asleep and didn't wake up). Now I know that he should have had that particular pill that night. I was very grateful for the morphine towards the end but wish I (and hospice) had remembered that pill. It may have helped him.

Thanks for the tip Jlynn. When I worked Hospice, that med was not a kit thing or even a regular thing so good to know when that time comes.

Very unclear about timelines in this situation. He may even take the option to stop eating/drinking which Hospice said they would look into as this team has not worked with that before. Will he really do that? Who knows. Originally he wanted to do the Dignitas way out.

VSED.
Voluntary Stop Eating and Drinking. It is a known thing.

If it does come to this, try to encourage at least fluids.
Starving is one thing, but dying from dehydration... :-(

For a short spell there I thought hospice gives out hallucinogenic drugs for end-of-life patients, haha. Not the worst idea, some might enjoy traveling again.

The VSRD guides say if you don’t stop drinking too that you willl bloat and your kidneys which are suffering from the starvation will make you really uncomfortable.

Yikes, I hear Hospice can manage the whole thing but it makes my soul yell “titrate the morphine”. Hospice seems super eager to start him on that. They called me today.