wishmobbing
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So sorry to hear about the red hot mess! Stay strong.
Hold on Tight...
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Transitioned to Thorazine tonight because he was awake and paranoid/ angry not as bad as last night but still happening. Thus far the Thorazine worked.
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Remember all the other calming things too as they will help you - soft lighting, scented candles or aromatherapy, music, physical contact involving stroking, face and hand washing or oiling. Whatever feels right and good, do it. As the meds started to keep Chris calm (with FTD he had not been calm for a long time!) I often just babbled on stuff to him too - in a kind of sing song, soothing voice. Go with what works for you, these are just prompts for what might feel right.
Still sending lots of love and strength your way xxx
Still sending lots of love and strength your way xxx
Narrowminded
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Lenore I’m holding you and hugging you from a far. You are very strong and your love for Brian clearly evident in every post. My heart breaks for you as I know what you are feeling. Praying for a quick and pleasant passing for Brian and strength for you. Love you my friend.
Hugs,
Hugs,
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The nurse was here this morning and literally minutes after she arrived, we heard the rattle in his breathing. I won’t bore you with the meaning of that, most of you know. In other news, O2 sat was at 62 (from 92 Tuesday) even though he is using Oxygen. Heart rate 145.
It’s been just about 36 hours since Brian drank about a pint of water and had applesauce, yet this road seems to be coming to a close. After the afternoon aide leaves today, and I plan to send her home early I will remove the oxygen. Doing Oxy liquid every two hours now.
My take is that Thorazine, combined with the tapering of food before we went full VSED, combined with his will to end this has sped things up. The nurse felt he’d be gone sometime tomorrow. From what I’ve seen I tend to agree. Even if he surprises us and lasts a few days my fears of this going on and on due to his strong heart and organs have evaporated.
I finally realized just the past few days how the hospice team had fallen in love with him. It’s pretty adorable, actually.
I am also seeing the discomfort with the term “palliative sedation” and encountered a Dr yesterday who was pretty apparently not for the VSED concept. He asked me questions like “has he seen everyone he wanted to talk with?” I nearly said Dude, he’s out of his head now when he’s awake, yes he has but the point is mute”.
The same Dr (a fill in for our regular one) actually said to me “It’s not what you want that matters but what he wants” when I said I wanted him sedated now. No worries, we had that discussion right quick.
My purpose in telling all of this is that if you or a loved one are contemplating VSED with sedation these are just some potential hiccups with hospice. I must say overall and so far though I would recommend hospice in the strongest terms. Go your own way, but as the time comes ever closer I am very relieved I don’t have to whip out a care directive for any paramedics.
I now have medicine to dry up the rattle. I doubt I’ll be sleeping much tonight. I only cried once today. It’s all sort of unbelievable.
It’s been just about 36 hours since Brian drank about a pint of water and had applesauce, yet this road seems to be coming to a close. After the afternoon aide leaves today, and I plan to send her home early I will remove the oxygen. Doing Oxy liquid every two hours now.
My take is that Thorazine, combined with the tapering of food before we went full VSED, combined with his will to end this has sped things up. The nurse felt he’d be gone sometime tomorrow. From what I’ve seen I tend to agree. Even if he surprises us and lasts a few days my fears of this going on and on due to his strong heart and organs have evaporated.
I finally realized just the past few days how the hospice team had fallen in love with him. It’s pretty adorable, actually.
I am also seeing the discomfort with the term “palliative sedation” and encountered a Dr yesterday who was pretty apparently not for the VSED concept. He asked me questions like “has he seen everyone he wanted to talk with?” I nearly said Dude, he’s out of his head now when he’s awake, yes he has but the point is mute”.
The same Dr (a fill in for our regular one) actually said to me “It’s not what you want that matters but what he wants” when I said I wanted him sedated now. No worries, we had that discussion right quick.
My purpose in telling all of this is that if you or a loved one are contemplating VSED with sedation these are just some potential hiccups with hospice. I must say overall and so far though I would recommend hospice in the strongest terms. Go your own way, but as the time comes ever closer I am very relieved I don’t have to whip out a care directive for any paramedics.
I now have medicine to dry up the rattle. I doubt I’ll be sleeping much tonight. I only cried once today. It’s all sort of unbelievable.
wishmobbing
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Thank you for writing, Lenore. Forget about the doc, the rest of the care team sounds great.
Every two hours really means little sleep but you'll be surprised how long you can run on fumes when it's all downhill from here and when you know that you won't be holding his hand for much longer.
The last night of my PALS I maybe slept half an hour during which time he slipped away, then another half hour in the late afternoon when his family ordered me to bed for a nap.
I'm so sorry you have to have this happen with Brian. You're an extraordinary CALS and you make me proud.
Every two hours really means little sleep but you'll be surprised how long you can run on fumes when it's all downhill from here and when you know that you won't be holding his hand for much longer.
The last night of my PALS I maybe slept half an hour during which time he slipped away, then another half hour in the late afternoon when his family ordered me to bed for a nap.
I'm so sorry you have to have this happen with Brian. You're an extraordinary CALS and you make me proud.
Buckhorn
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Holding you & Brian so very tightly in my thoughts & prayers Lenore. As Wish said, you have been an extraordinary CALS. I wish for a quiet passing for Brian, and ........ when you know he is gone, strength to you my CALS sister. You have done ALL the right things!
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Still here but he seems... More gone?
Yesterday and today were going to be the days we got to sit and talk together. It’s okay that it is happening this way though. I’m glad we never had that exact “okay today’s the day” start to this, particularly with him fully lucid.
Not eating or drinking came naturally in a way out of the heavy medication use when he hit they Terminal Agitation type mode (yup, a real medical term) at 2:00 AM Thursday.
I’m giving the max dose of Oxy prescribed, 20mg every 2 hours because for one thing the Oxygen is off. He seems to mind not at all. Heck, his breathing sounds les labored without it.
We got to spend a lot of time talking the week before he lost it. I have no regrets there. I feel my self as I am very distinctly in this, the person who rejects caretaking by others, does not accept support readily. I like the solitude right now anyway. I feel like at this moment Brian belongs to himself, to me, and to God.
On Thursday, when I ran to work for a few hours to sort things out Julia one of Brian’s caregivers was here. A couple friends stopped in, wanted to wake him up, kept talking politics which they had expressly been asked not to do, and do on. They dropped in on top of it.
People want to make these things about themselves. The time for visiting with Brian has past and I’m kind of relieved a heavy storm is coming in as it will keep drop ins away.
My random thought though is if he passes tonight or tomorrow, he’s going to be here in the living room a bit. Traffic will be intense.
It’s okay if that happen though. We are alright.
Yesterday and today were going to be the days we got to sit and talk together. It’s okay that it is happening this way though. I’m glad we never had that exact “okay today’s the day” start to this, particularly with him fully lucid.
Not eating or drinking came naturally in a way out of the heavy medication use when he hit they Terminal Agitation type mode (yup, a real medical term) at 2:00 AM Thursday.
I’m giving the max dose of Oxy prescribed, 20mg every 2 hours because for one thing the Oxygen is off. He seems to mind not at all. Heck, his breathing sounds les labored without it.
We got to spend a lot of time talking the week before he lost it. I have no regrets there. I feel my self as I am very distinctly in this, the person who rejects caretaking by others, does not accept support readily. I like the solitude right now anyway. I feel like at this moment Brian belongs to himself, to me, and to God.
On Thursday, when I ran to work for a few hours to sort things out Julia one of Brian’s caregivers was here. A couple friends stopped in, wanted to wake him up, kept talking politics which they had expressly been asked not to do, and do on. They dropped in on top of it.
People want to make these things about themselves. The time for visiting with Brian has past and I’m kind of relieved a heavy storm is coming in as it will keep drop ins away.
My random thought though is if he passes tonight or tomorrow, he’s going to be here in the living room a bit. Traffic will be intense.
It’s okay if that happen though. We are alright.
Narrowminded
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Lenore it is definitely close now and you will run on fumes. It is a surreal time. My crying wasn’t there during those last 48 hours. It was there before and after. And now.
You are doing everything right. Enjoy that solitude. I know I did and I believe my Brian did as well.
Know that I am here holding you and hugging you tightly.
You are doing everything right. Enjoy that solitude. I know I did and I believe my Brian did as well.
Know that I am here holding you and hugging you tightly.
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