Hold on Tight...
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Jlynn
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Jersey, My brother said the same. At first he was afraid of dying but the further he got into it he was afraid of living. He made me promise to "help" him when the time came. I had to let him do it his way even though it felt like it killed a part of me in the process. He was the boss. I really feel your pain Jersey. Sending you a big hug.
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- 11/2015
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Lenore, I've been following this whole thread. I could have written all of this, except that my PALS' progression is slower than Brian's. When you said why couldn't he have had a heart attack - I've often thought why couldn't it be cancer. Then we would be able to try chemo or radiation and maybe have some hope. Pretty sad when you wish for a heart attack or cancer instead.
I think we've all had "friends" disappear. There's a woman who posts stuff on social media about her great friend, my PALS. She has been over once. I am very thankful for those who have stayed around.
It must be pure torture for our PALS to experience their bodies failing them. I try and imagine it and just can't. My PALS has always put great store in physical activity and now he is unable to do most of what he loves. I worry too that he is starting to slur his speech and how that will make him feel as he is so gregarious. Jrzygrl I feel for you. Sometimes I'm even afraid of living, having to watch my PALS weaken and being unable to do anything about it.
V
I think we've all had "friends" disappear. There's a woman who posts stuff on social media about her great friend, my PALS. She has been over once. I am very thankful for those who have stayed around.
It must be pure torture for our PALS to experience their bodies failing them. I try and imagine it and just can't. My PALS has always put great store in physical activity and now he is unable to do most of what he loves. I worry too that he is starting to slur his speech and how that will make him feel as he is so gregarious. Jrzygrl I feel for you. Sometimes I'm even afraid of living, having to watch my PALS weaken and being unable to do anything about it.
V
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Well today I called home at 2:30 ish to see how Brian was doing. The hospice chaplain was on her way and he made the unusual move of saying he was letting the aide go home early and was wondering if I could leave work and meet with him and the Chaplin.
Knowing something was up, I came home. Well, Brian wants to stop eating and drinking. Brian wants out. I told him we needed a week to set up palliative Care with the Doctor and hospice team. This upset him at first, he wanted out now. As we talked with the Chaplain he settled down.
I must have asked him four times if he was wanting to do this because he thought he was a burden to me. I said I know how much you love me, and I love every day with you. I respect what you want. He said he was a burden to himself.
I have hospice on board getting a meeting with the Dr next week to make this plan. Meanwhile, he wants less food and more drugs. I’m going to go straighten things around at work to be gone I think about two-three weeks, maybe even four. We’ll see.
Dr said about two months ago that the process would take about 7 days and they could do palliative sedation.
The road is ending but just beginning. Walk with me.
Knowing something was up, I came home. Well, Brian wants to stop eating and drinking. Brian wants out. I told him we needed a week to set up palliative Care with the Doctor and hospice team. This upset him at first, he wanted out now. As we talked with the Chaplain he settled down.
I must have asked him four times if he was wanting to do this because he thought he was a burden to me. I said I know how much you love me, and I love every day with you. I respect what you want. He said he was a burden to himself.
I have hospice on board getting a meeting with the Dr next week to make this plan. Meanwhile, he wants less food and more drugs. I’m going to go straighten things around at work to be gone I think about two-three weeks, maybe even four. We’ll see.
Dr said about two months ago that the process would take about 7 days and they could do palliative sedation.
The road is ending but just beginning. Walk with me.
katygal
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- 01/2018
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Lenore,
Please know I am "walking" with you and that you and Brian are in my thoughts and prayers. Through your posts I see strength and love. May this time also be one of peace and comfort.
Please know I am "walking" with you and that you and Brian are in my thoughts and prayers. Through your posts I see strength and love. May this time also be one of peace and comfort.
Thomas933
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- 12/2018
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Lenore - I have seen in the short time I’ve been here how many strong, wise and kind people here will walk with you. I will too from a distance out of respect because I do not know your path. I wish you what you need start this journey. I wish you and Brian as much comfort as you can have.
Peace go with you both.
Peace go with you both.
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Lenore, I’m walking with you. I’m also walking with Brian because I see his point of view and may walk the same route myself in the future.
You’re an awesome person, spouse, and caregiver, and know that Brian loves you and appreciates what you’re doing for him.
It’s an awful disease.
You’re an awesome person, spouse, and caregiver, and know that Brian loves you and appreciates what you’re doing for him.
It’s an awful disease.
Buckhorn
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Lenore, I am thinking of you both. As Ernie stated, I have also been very quiet lately, but I think of you (& many others) in their daily struggles. You have been and continue to be an amazing CALS for Brian, and loving him fiercely, also respect his wishes. This is a path the two of you are walking together, but there are many of us out here walking along with you in spirit. Strength wished for both you and Brian my CALS sister.
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VSED can be a lengthy process. It may be right for some and not for others. Titrating morphine to comfort accomplishes the same goal when P/CALS opt for a less prolonged journey.
Just to be clear, neither requires a formal process nor hospice support, but an advance directive should be executed before either is undertaken.
In re the various options, which we have also discussed elsewhere, P/CALS, feel free to post or PM.
Best,
Laurie
Just to be clear, neither requires a formal process nor hospice support, but an advance directive should be executed before either is undertaken.
In re the various options, which we have also discussed elsewhere, P/CALS, feel free to post or PM.
Best,
Laurie
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ThisPresentMoment
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- 12/2017
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Hi Lenore, I have not been here much. Things have been crazy busy since the end of January when Dad passed. I'm glad that I stopped by today.
I think I've posted about this in other threads, but I wanted to share here. Dad was not concerned about dying, but he did ask about the process of dying. Based on what I had read, I told him we would increase his medication so that he was comfortable and not in pain. It happened more quickly than I expected. We hadn't been on hospice for a week. I hope that whatever decisions you make, the process goes as smoothly and peacefully for you and Brian. We are here walking with you.
I think I've posted about this in other threads, but I wanted to share here. Dad was not concerned about dying, but he did ask about the process of dying. Based on what I had read, I told him we would increase his medication so that he was comfortable and not in pain. It happened more quickly than I expected. We hadn't been on hospice for a week. I hope that whatever decisions you make, the process goes as smoothly and peacefully for you and Brian. We are here walking with you.
affected
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Lenore, totally with you.
This does not have to be lengthy. I will say plainly that what makes it lengthy is doing it in part measures. What I mean by this is - if you give a little bit of nutrition and a little fluids - 'just for comfort' - then you will drag the whole process out.
If he says on this day I stop nutrition and fluids, then stick to that, and keep him really well medicated, don't be afraid to titrate, and it won't be weeks and drawn out.
This is the biggest act of love for you, and the bravest thing for him. What a man he is!
He has gone so much further than he thought he would, and you have been such an amazing wife and CALS and now you are stepping up for the biggest challenge of the whole thing. I know you are amazing. If you feel you are not, then it only shows that you are, because the amazing ones are the ones that are facing something they don't feel up to!
This does not have to be lengthy. I will say plainly that what makes it lengthy is doing it in part measures. What I mean by this is - if you give a little bit of nutrition and a little fluids - 'just for comfort' - then you will drag the whole process out.
If he says on this day I stop nutrition and fluids, then stick to that, and keep him really well medicated, don't be afraid to titrate, and it won't be weeks and drawn out.
This is the biggest act of love for you, and the bravest thing for him. What a man he is!
He has gone so much further than he thought he would, and you have been such an amazing wife and CALS and now you are stepping up for the biggest challenge of the whole thing. I know you are amazing. If you feel you are not, then it only shows that you are, because the amazing ones are the ones that are facing something they don't feel up to!
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