Hold on Tight...

If you want to do VSRD then it is actually kinder to stop fluids as well. One has to understand that this cannot be compared to a healthy person going on a hunger strike.

Holding on tight with ya Lenore xxx

Lenore, More towards the end my brother took lorazepam and morphine regularly. He could not be comfortable without it.He did not have a feeding tube so through this time he did not eat much at all. He just couldn't. He felt too sick. Once he went 11 days without any food and I thought that was the end but he rallied a bit and had a few more meals in the weeks before he passed. He did not choose to stop eating. He said God chose for him. He was however able to keep himself at least fairly hydrated. At least there was that.

I'm sending you a huge hug Lenore as the road ahead will be tough. Your such a wonderful person and caregiver. Bless you.

Lenore, first hugs. Then don’t let hospice push you toward morphine before you both are ready or it is clearly needed. Yes the idea is comfort, but if Brian is currently comfortable, then reserve it for when he’s not.

Hugs,

Sue

Lenore,

You and Brian are both in my prayers. You have the training and you and Brian will know when it's time to push the morphine.

Random thought today: What happens after your heart breaks? When I met Brian, my agnostic husband and we first started out I had the feeling that love like ours was in the service of God.

I know I have never lost anyone or anything this important to me. My uncle, who was more like a Dad suicided (health issues) back when I was 29 and it was devastating. My father (not his brother) suicided when I was 4, but I barely recall that (I grew up in it, another whole story).

I know I will go on because it’s just what you do, you have to move forward. I feel all this pre- grief now and grief for the various things we seem to lose weekly or even daily. I want it to end and I dread the end.

I am not sure if Hospice and Morphine helped make it closer or if it’s actually closer. It sure made it feel
Closer. Brian said he is breathing easier on his tiny dose of morphine. That makes it official- his breathing has gone downhill from two months ago and the normal readings.

I hope the first survivor of ALS has been born.

Oh hon, when your heart breaks you live with a broken heart

You will find there is still beauty in the world, but you will live with this for the rest of your life. There is nothing tougher than this one xxxx

I'm glad the tiny morphine doses are helping, it's an amazing drug when used correctly.

Lenore, you don't need hospice to "manage" Brian's death. Just follow your gut to manage the hospice staff.

I do not believe families need to go through a whole VSED thing of weeks. From all I have seen, if someone is ready, their eating and drinking declines at its own pace and is reflective of, not causing the dying process.

Those who feel they need to enter into formalistic VSED may be misinformed as to the role of the mind and BiPAP in driving a comfortable, near-term passage if/as desired.

oh Lenore...my heart breaks for all that your going through. Your Brian sounds like a very lucky man to have you in his life. My thoughts are with you as you navigate this journey. Hugs.

You have been and continue to be an inspiration to me as a CALS throughout our journey. Much love and peaceful thoughts are with you and Brian.

I think the argument for VSED in ALS is that you get a closer shot at actually controlling when you go. The other sound way to do that is morphine titrates, but that involves most often getting into stages of ALS that some do not want to wait for.

Lenore I’m sending more hugs and prayers for peace and wisdom as you navigate this new change.

Hugs,

Sue

Actually, the truth is more the reverse. VSED produces highly variable results in terms of duration, and no one in control of the morphine needs to wait for any particular stage to titrate to comfort, presuming anyone starting it is at some level of discomfort.

Just keeping it real, folks.

Lenore, I think it would be a mixture of VSED and morphine titration. Getting a good relationship with hospice now is going to really stand you both in good stead when the time comes for end of life decisions. This is regardless of what decisions he makes and at what stage.

We certainly found that it made things so much easier that we knew our team well already, both for the fact we were not dealing with strangers, but they were right on target with who we were and how we wanted things and could meet those needs easily.

Yet actually Titration g Morphine is a step a lot of Doctors in my experience are not ready to play with until the end is pretty near, and by that I don’t mean an end at the time of your choosing. That’s controlled by a willingness to administrate in a facility and a willingness to give refills outside of a facility.

It would be nice if we could get our Rx and just titrate away, but not so simple with a controlled substance. I saw this myself working in hospice, and that piece is real too.

VSED however is legal and possible at any stage. He w long it actually takes us highly variable. Odds are excellent it will not go past 21 days, but with serious comfort care cooperation that would be one hell of a long time. It too must be handled in cooperation with hospice.

Lenore I hope that by getting a good relationship with those in charge of dispensing morphine you will be at ease.
Usually you start out with fairly low doses, and don't get to give large frequent doses for long because of the impact ALS already has on the breathing. It may take less morphine than you anticipate to go through the end stages.

I know what my Chris's first wife was receiving as she went through the end of cancer with brain secondaries, and what he received here at home in his end days.

The comparison is ridiculous the differences are so large.