Hold on Tight...

[Lkaibel]

Thank you all. I agree wholeheartedly with Tillie on VSED. I also personally believe VSED should only be undertaken as a planned process and only with hospice/medical support. We spent some time researching this, and found that palliative sedation was the only sure way to do it without the horror stories you sometimes hear circulated on VSED. A clear plan with how to proceed once the choice was made was also very important.

I can further say that in spite of its difficulties hospice has provided us with many things we either would not have otherwise had or would have had at greater cost this past year.

 

[Jlynn]

I'm right there with you Lenore. Your like the pied piper with an amazing following right there with you in thought as you navigate this awful journey you both have been handed. Your amazing. Brian is amazing and I am so sorry that two such amazing people have had to go through this. Peace be with you both. Jlynn

 

[vltsra]

I'm walking with you Lenore. You and Brian have both shown such strength and love.

V

 

[affected]

I agree Lenore that hospice support, particularly for people who do not work already in the medical field is the smartest move. You are spot on I feel - plan this, understand how to do this well, and have the support you know you need. It will also increase your confidence and sense of peace in the process too.

Each person needs different levels of support, and then it depends on how the process goes as to what supports you do draw on.

When my Chris was actively dying it was really difficult when his children visited briefly as their emotions would totally change everything in the home, and impacted on him. They would react to things that were happening and did not understand the processes. So they needed a very different kind of support to what I needed.

To be able to create atmosphere with candles and music and quiet movements was another part of making this all work. Creating beauty around the home during this time definitely impacted both of our spirits as he eased out of this world.

For me, the family here also held my hand right through that last 4 days and it was amazing to have that and it made a difference. So we have your back now, I hope you can find peace in this process. I can honestly say that the process for my Chris was very peaceful and dignified and brought me a lot of solace. Every other day, week and month of this disease was a nightmare for him, so that peace in the last days was striking. Nearly 5 years later, when I feel some of the awful side of the loss, I can still draw solace from that.

 

[wishmobbing]

Signing up for the walk with Lenore and Brian.
I understand his impatience very well. Such a big decision. In the meanwhile send him greetings and farewells. Your walking together but to very different destinations.
Hugs to you!

 

[MarieLaure]

Walking with you Lenore

 

[soonerwife]

We are all right here with you Lenore!

 

[Lkaibel]

Even now while I wrap things up working before my leave and we await our Dr visit/ plan we have changed some things.

Brian is taking more meds, and has cut food down by half. He said he has no appetite anyway. He sleeps much more now. No more TV, only gentle music.

This week is the bridge to when we get the plan in place to fully go VSED. I’m skso pretty sure it’s the last week or so we will have conversations since he’ll be too sedated when we start that. I’m starting to gather up people he wants to see and taking a polite pass on others.

Brian is choosing to donate his body for research so we got papers signed for the U of M today. I’ll scan those over so hopefully they go through by the time he passes.

I won’t lie. As hard as this is a part of me is relieved he will finally be free of this monster. If I did not know for sure that ALS exists, I’d think some nutter made it up. I’ve been looking at our wedding pics tonight. Now that is Brian.

 

[lgelb]

More drugs and less food over time, is a more gentle path than the 60→0 notion of formalized VSED, for sure. That is what I meant when I said the concept of VSED, with appropriate meds/BiPAP management, can be implemented without palliative sedation/hospice if desired, an opportunity to slip away without a prolonged period of semi/unconsciousness.

For those who haven't heard the story, my husband declared his final wishes after a fully conscious day, during which he had some food/drink but not a lot, as he had been gradually tapering off without a calendar/saying au revoirs during the week in which he could no longer transfer to his wheelchair.

He died a few hours later, my having titrated his morphine to comfort and then removing his BiPAP. Along with others here before and since, he didn't want a long goodbye. Since we did not have hospice, the paramedics who pronounced him simply asked to see his advance directive, which is why I advise to have it at hand. Since we no longer went to ALS clinic, his PCP (who wrote his first morphine a week earlier, having last seen him within the year, as is required) signed the death certificate.

Lenore, I understand that you opted for hospice to direct proceedings, so this is not aimed at you. But there is a lot of misinformation out there, whereas P/CALS deserve to know their full array of options. In fact, an article today reminded me that we need to be up front about this -- the caregiver presumed that a self-directed death required a doctor to formally help, and spent a lot of time trying to find one, when the couple could have been spending time together.

If Brian has made his own best plan, I am with both of you wherever it leads.

Best,
Laurie

 

[affected]

Lenore as I walk beside you I can honestly say that when I knew, 4 days before he passed, that Chris was moving into actively dying, I felt such a peace settle over me. I know it helped us both a lot.

Go with your gut, it will lead you true xxx

 

[Narrowminded]

Lenore I am here with you. Holding your hand. These last days will be peaceful and tough all at once. You have been an amazing CALS and Brian knows how much you love him. You are giving him a wonderful gift. Holding you tight as you walk this final path.

Hugs

 

[affected]

still walking there beside you xxx

 

[pittsburghgal]

Lenore, I am walking with you as well. I am praying for a peaceful passing for Brian.

Sharon

 

[wmilo]

Lenore,

I am so sorry that you and Brian are traveling this part of the path. A truly terrible position for you both.

Blessings to you and Brian and to your forum friends who are supporting you through this.

Best regards,
Bill

 

[Lkaibel]

It crossed my mind today that he could change his mind, but I don’t believe he will. He seems so peaceful tonight. I feel peaceful too.

We are seeing the Dr here Monday. I’m starting my leave Thursday. I’m getting a mattress for the floor in the living room to stay near him.