Authenticity VI
p***enger
Join Date: Nov 2012
Location: NYC
Posts: 19,044
Ajax, if I can throw something else in. Not meaning to push. I know it's hard.
4 hours a week is a good start. It's not a lot of time.
I've kind of gathered that money isn't a big issue for you two.
When my father was dying -- and it took 6 years, and he was bedridden at least the last two, couldn't feed himself for the last 4, and never lost his wits until the last few days --
My mother didn't hire nurses round the clock. She couldn't afford it. But she couldn't lift him or stay with him all night long when he woke in pain or frightened and could do absolutely nothing, literally not even move. She hired women she called "country people" -- mostly paid them cash under the table, women who'd previously worked as maids or such and had strong arms and good hearts. They were company for him, sympathetic to her, helped with some of the things that's it's hard for a wife to see happening to her husband, and allowed her to leave the house from time to time, to see a dentist, go to the store.
She got some of them by word of mouth. Eventually she found a group that's listed in my home town yellow pages under "Home Care".
PS -- Different people tolerate opiates differently. I certainly didn't think Robby was likely in any way abusing them. My husband hallucinates pretty much whenever he takes opiates -- he hallucinates post-op. He hates it.
4 hours a week is a good start. It's not a lot of time.
I've kind of gathered that money isn't a big issue for you two.
When my father was dying -- and it took 6 years, and he was bedridden at least the last two, couldn't feed himself for the last 4, and never lost his wits until the last few days --
My mother didn't hire nurses round the clock. She couldn't afford it. But she couldn't lift him or stay with him all night long when he woke in pain or frightened and could do absolutely nothing, literally not even move. She hired women she called "country people" -- mostly paid them cash under the table, women who'd previously worked as maids or such and had strong arms and good hearts. They were company for him, sympathetic to her, helped with some of the things that's it's hard for a wife to see happening to her husband, and allowed her to leave the house from time to time, to see a dentist, go to the store.
She got some of them by word of mouth. Eventually she found a group that's listed in my home town yellow pages under "Home Care".
PS -- Different people tolerate opiates differently. I certainly didn't think Robby was likely in any way abusing them. My husband hallucinates pretty much whenever he takes opiates -- he hallucinates post-op. He hates it.
Member
Join Date: May 2013
Location: east coast
Posts: 1,332
Please also reach out to friends. Sometimes people want to help but don't know how so they do nothing. Reach out and say I need help with housework or errands or someone to sit a spell with Robby just so you have a moment to yourself.
If this isn't something you want to do see about advertising for housekeeping or errand running. Maybe a neighbor's teen kid.
I don't know how you are going to cope when he is gone. I find myself recoiling from the thought. Your love is a very special thing. It is going to be crushing. But, we will always be here to lift you up and hold you. I have been praying for you two every night since I first found these threads. Please know you aren't alone.
If this isn't something you want to do see about advertising for housekeeping or errand running. Maybe a neighbor's teen kid.
I don't know how you are going to cope when he is gone. I find myself recoiling from the thought. Your love is a very special thing. It is going to be crushing. But, we will always be here to lift you up and hold you. I have been praying for you two every night since I first found these threads. Please know you aren't alone.
Member
Join Date: Oct 2013
Location: Midwest
Posts: 4,860
Hi, Melissa,
Massive hugs going from me to you and Rob. I'm so sorry to hear how difficult things have become.
Is there a friend who can be your advocate so that your attention can be fully on you and Rob? I wondered whether there is a friend there who can intercede. I did find a couple of organizations that may be helpful -- perhaps there is someone who can contact them?
Here are the links:
Canadian Virtual Hospice
End of Life Care Canada | Hospice Care Canada | QELCCC Home
They are both in Canada. Maybe they will be of some help.
V.
Massive hugs going from me to you and Rob. I'm so sorry to hear how difficult things have become.
Is there a friend who can be your advocate so that your attention can be fully on you and Rob? I wondered whether there is a friend there who can intercede. I did find a couple of organizations that may be helpful -- perhaps there is someone who can contact them?
Here are the links:
Canadian Virtual Hospice
End of Life Care Canada | Hospice Care Canada | QELCCC Home
They are both in Canada. Maybe they will be of some help.
V.
Member
Join Date: Jan 2015
Posts: 283
Oh my poor Raccoon. I wish you had family that lived closer that could be there for support. Even if you had a friend to hang with you for a night. We are always here however. Just typing out your feelings helps... at least it helps me in many ways.
Always here and you are not alone,
Puffy
Always here and you are not alone,
Puffy
Member
Join Date: May 2012
Location: canada
Posts: 7,242
i'm so very sorry to hear of these tough times, Melissa and Rob. the pain and the meds to ease it...two unpalateable sides of a coin.
all i can add to what others suggested is the there are patient advocates at a lot of hospitals, and some cancer agencies. these people are there specifically to walk with you through all the things "you don't even know you don't know".
if you google "patient advocacy ottawa" a bunch of things come up.
if you want to, pm me and tell me what hospital you're associated with, i'm happy to do the googling and checking this out in more detail.
hope this night is better for you both.
all i can add to what others suggested is the there are patient advocates at a lot of hospitals, and some cancer agencies. these people are there specifically to walk with you through all the things "you don't even know you don't know".
if you google "patient advocacy ottawa" a bunch of things come up.
if you want to, pm me and tell me what hospital you're associated with, i'm happy to do the googling and checking this out in more detail.
hope this night is better for you both.
Woe is Moo.
Join Date: Aug 2013
Posts: 2,746
Around here is network of immigrants, usual from Eastern Europe, who was nurses and healthcare workers but not have credentials in U.S., but they wonderful (my brother dating one of them) and they provides excellent care to sick and elderly. They move in for reasonable price and cook and shop and clean, whatever is needed. I bet is same thing in Canada, maybe you find out via local support groups and such. I hope you find grief/survivor support group for you self.
Also, knowing Robby he probable will has fun analyzing his hallucinations. From my experiences, it seem like some of them is a kind of Mr. Toad Wild Ride end of life processing.
Long hug from Cow.
Also, knowing Robby he probable will has fun analyzing his hallucinations. From my experiences, it seem like some of them is a kind of Mr. Toad Wild Ride end of life processing.
Long hug from Cow.
Adventures In SpaceTime
Thread Starter
Join Date: Jun 2008
Location: Ottawa, Canada
Posts: 5,827
Hi Friends!
So many beautiful, loving, supportive posts. I presently don't have enough words to thank each post individually so please know each post has real meaning for Melissa and myself.
Thanks also for all the links and suggestions on reaching out. Just want everybody to know Melissa and I already have well in place everything that is needed with our doctors and hospice team. For example, the hospice nurses we've worked with while I was fighting my infection back in May and June are still with us and will be right until the last days. Melissa and I have well advocated for services, and those services are assured. What is yet to be finally contracted for is my new personal physician who will also do house calls as required. The population here in Ontario is around 14 million. Ottawa is about 1 million. By way of example, New York alone although much smaller has many more people, and thus services. Nonetheless, Ottawa is more than sufficient for our needs. Our present frustrations are not about lack of services, but more about how my cancer is quickly advancing, how we are reacting both as individuals, and as husband and wife deeply in love. Thanks so much for all the links and so on, but please believe me when I say we are on top of our resources. Yes, we have had some disappointments and even a few arguments with services provided, but this does not mean things are a complete mess. Things are improving contractually, and we're almost ready to finally turn everything over to the hospice services.
I believe it is important to realize neither Melissa nor myself would work against ourselves by not reaching out. Clearly, these threads are themselves testaments on our abilities to create resources of support, friendship, and love. Believe me, I know how to advocate for myself, and for my beloved wife. Rest assured in real f2f life I'm even more effective, lol. We have left no stone unturned. It's true these hospice services would rather just take charge and do what they do, and since I won't allow for that, things have moved more slowly in administration. That's okay, I'm not dead yet, lol.
As for the drug therapies, as I've said before, please don't get the idea that I'm suffering in unmanaged pain. I've had numerous plans of action to consider. Many I have thoughtfully refused, including medication marijuana, lol. Doing some bongs as I fade off into death is not going to happen. Yes, they have it in pill formulations too. Wow.
I've never done pain meds as an ongoing therapy, so this ongoing practice of around the clock dilaudid is different for me. It eats a bit at my personal levels of achievement, tires me, and if I become too tired, as Melissa had mentioned, some hallucinations manifest. For myself, I'm not surprised. I can "see" the hallucinations as they happen. For the onlooker, it might seem entirely different and scary, especially since my beautiful Melissa rightfully has her own feelings, fears, insights, and concerns. What I consider mild hallucinations are likely to happen again, but for now, I'm experiencing some mild hallucinations brought on by my fatigue, my frustrations, my prescriptions. I don't as yet think cancer itself is manifesting these particular hallucinations. Unfortunately enough, we'll get there as my liver begins to seriously fail. We're not there today.
Where we are at today is Melissa and I are sharing of ourselves with you wonderful people how we are managing. The best way to help us is for contributors to believe things are well in hand already. Nothing is being left to chance - we are on top of things here. I know these threads are massively long, but before someone again mentions to us how much help is out there, please perhaps pause and consider what might have already been said. What we absolutely do need is peoples supports and personal experiences in dealing with hard times, end of life times, and death. I know its already grim, and my apologies, as it's likely to get grimmer yet. As for outside agencies, we're all very gratefully stocked up for suggestions, thanks. I hope I've not hurt anybody's feelings...
What we are truly struggling with though is how Melissa and I will all to soon be separated by death. This crushes us to no end, and makes everything else pale in comparison as "problems" including hospice planning. If we go back a few threads, it was clear back then we were well on top of things, as they developed. Its also clear Melissa and I have no better answer today for our personal loss challenges then we did when cancer came to town.
So many beautiful, loving, supportive posts. I presently don't have enough words to thank each post individually so please know each post has real meaning for Melissa and myself.
Thanks also for all the links and suggestions on reaching out. Just want everybody to know Melissa and I already have well in place everything that is needed with our doctors and hospice team. For example, the hospice nurses we've worked with while I was fighting my infection back in May and June are still with us and will be right until the last days. Melissa and I have well advocated for services, and those services are assured. What is yet to be finally contracted for is my new personal physician who will also do house calls as required. The population here in Ontario is around 14 million. Ottawa is about 1 million. By way of example, New York alone although much smaller has many more people, and thus services. Nonetheless, Ottawa is more than sufficient for our needs. Our present frustrations are not about lack of services, but more about how my cancer is quickly advancing, how we are reacting both as individuals, and as husband and wife deeply in love. Thanks so much for all the links and so on, but please believe me when I say we are on top of our resources. Yes, we have had some disappointments and even a few arguments with services provided, but this does not mean things are a complete mess. Things are improving contractually, and we're almost ready to finally turn everything over to the hospice services.
I believe it is important to realize neither Melissa nor myself would work against ourselves by not reaching out. Clearly, these threads are themselves testaments on our abilities to create resources of support, friendship, and love. Believe me, I know how to advocate for myself, and for my beloved wife.
Rest assured in real f2f life I'm even more effective, lol. We have left no stone unturned. It's true these hospice services would rather just take charge and do what they do, and since I won't allow for that, things have moved more slowly in administration. That's okay, I'm not dead yet, lol.As for the drug therapies, as I've said before, please don't get the idea that I'm suffering in unmanaged pain. I've had numerous plans of action to consider. Many I have thoughtfully refused, including medication marijuana, lol. Doing some bongs as I fade off into death is not going to happen. Yes, they have it in pill formulations too. Wow.
I've never done pain meds as an ongoing therapy, so this ongoing practice of around the clock dilaudid is different for me. It eats a bit at my personal levels of achievement, tires me, and if I become too tired, as Melissa had mentioned, some hallucinations manifest. For myself, I'm not surprised. I can "see" the hallucinations as they happen. For the onlooker, it might seem entirely different and scary, especially since my beautiful Melissa rightfully has her own feelings, fears, insights, and concerns. What I consider mild hallucinations are likely to happen again, but for now, I'm experiencing some mild hallucinations brought on by my fatigue, my frustrations, my prescriptions. I don't as yet think cancer itself is manifesting these particular hallucinations. Unfortunately enough, we'll get there as my liver begins to seriously fail. We're not there today.
Where we are at today is Melissa and I are sharing of ourselves with you wonderful people how we are managing. The best way to help us is for contributors to believe things are well in hand already. Nothing is being left to chance - we are on top of things here. I know these threads are massively long, but before someone again mentions to us how much help is out there, please perhaps pause and consider what might have already been said. What we absolutely do need is peoples supports and personal experiences in dealing with hard times, end of life times, and death. I know its already grim, and my apologies, as it's likely to get grimmer yet. As for outside agencies, we're all very gratefully stocked up for suggestions, thanks. I hope I've not hurt anybody's feelings...
What we are truly struggling with though is how Melissa and I will all to soon be separated by death. This crushes us to no end, and makes everything else pale in comparison as "problems" including hospice planning. If we go back a few threads, it was clear back then we were well on top of things, as they developed. Its also clear Melissa and I have no better answer today for our personal loss challenges then we did when cancer came to town.
Member
Join Date: May 2013
Location: east coast
Posts: 1,332
I want to apologize for making assumptions and jumping in with unsolicited advice. I was quite concerned with Melissa's mental state at the time and didn't stop to think.
I have no experience with losing a spouse and very little with end of life situations. I wish I did so I could offer you solace. All I do know is cancer is the pits and the only thing you can be sure of is its unpredictability. I am glad you have everything in place and can just flip the switch to get it started. Now unfortunately is the home stretch. But, even that isn't a straight line in my experience.
Love and continued prayers for you both
I have no experience with losing a spouse and very little with end of life situations. I wish I did so I could offer you solace. All I do know is cancer is the pits and the only thing you can be sure of is its unpredictability. I am glad you have everything in place and can just flip the switch to get it started. Now unfortunately is the home stretch. But, even that isn't a straight line in my experience.
Love and continued prayers for you both
Do your best
Join Date: Aug 2014
Posts: 67,047
Robby if your not a machine you seriously remind me of superman i say this truthfully ive been through this & to see you posting with thought & compassion is awe inspiring i dont say that lightly
when my mum was still here all she wanted to do was go outside i was her carer and said your white blood cell count is low due to chemo but like you she was very independent and wouldn't take no for an answer i asked my mum what she wanted to do exactly ? my mum said i want to go to the swings in the allotments with your father lol I said the swings ? My dad then said yeah the swings i couldnt believe what i was hearing & thought if it makes you happy then go for it
I look back & think it really is the lil things that matter
Robby & Melissa
when my mum was still here all she wanted to do was go outside i was her carer and said your white blood cell count is low due to chemo but like you she was very independent and wouldn't take no for an answer i asked my mum what she wanted to do exactly ? my mum said i want to go to the swings in the allotments with your father lol I said the swings ? My dad then said yeah the swings i couldnt believe what i was hearing & thought if it makes you happy then go for it
I look back & think it really is the lil things that matter
Robby & Melissa
EndGame
Join Date: Jun 2013
Location: New York, NY
Posts: 4,677
Hi Robby.
It's good to see that you seem to be doing better. I imagine that each of us is and has been worried about you from the start. I've expressed my concerns and my feelings of helplessness with respect to your health, as have so many others. At least we all have each other, and that's a very good thing.
Seeing you wrap things up...taking care of Melissa, taking care of all your other business and venturing down yet another avenue of your struggles with life and death issues is both heartening and quite depressing, and never in equal parts. It's just the way things are, and we all knew this from the start.
Yes, you're not dead yet. Hearing this from you is also unsettling, to say the least. You're leaving and have already left an indelible mark on so many people. Crying is now an empty relief, a solitary and necessary pause in all the frenetic emotional maelstrom, and a signal that the now seemingly impending loss is both tragic and profound. I don't want to do this. I don't want to witness your decline. But I can't pull myself away. I need more of you, and I'm losing myself in all this, like innocently pulling a thread from a jacket that ultimately unravels. All the while keeping one eye on the clock. My kicked-in-the-stomach self seeks relief, and I'm not happy with the prospect of living with your memory alone. I want you stay, need you to stay, but you keep pulling away.
I've witnessed other people dying, including a couple of suicides, and I lived on past their deaths. I've always been left somewhere between wanting to hold on and desperately trying to forget. But forgetting never works, and the "desperately" part of trying turns into something else, something else that eludes definition and strikes with sharp fangs at efforts to understand it. So I try to stay perfectly still, without a single movement, petrified in the hope that this will bring people back to me. But as much as I want to freeze moments in time, they never do.
You're still here. You always will be.
It's good to see that you seem to be doing better. I imagine that each of us is and has been worried about you from the start. I've expressed my concerns and my feelings of helplessness with respect to your health, as have so many others. At least we all have each other, and that's a very good thing.
Seeing you wrap things up...taking care of Melissa, taking care of all your other business and venturing down yet another avenue of your struggles with life and death issues is both heartening and quite depressing, and never in equal parts. It's just the way things are, and we all knew this from the start.
Yes, you're not dead yet. Hearing this from you is also unsettling, to say the least. You're leaving and have already left an indelible mark on so many people. Crying is now an empty relief, a solitary and necessary pause in all the frenetic emotional maelstrom, and a signal that the now seemingly impending loss is both tragic and profound. I don't want to do this. I don't want to witness your decline. But I can't pull myself away. I need more of you, and I'm losing myself in all this, like innocently pulling a thread from a jacket that ultimately unravels. All the while keeping one eye on the clock. My kicked-in-the-stomach self seeks relief, and I'm not happy with the prospect of living with your memory alone. I want you stay, need you to stay, but you keep pulling away.
I've witnessed other people dying, including a couple of suicides, and I lived on past their deaths. I've always been left somewhere between wanting to hold on and desperately trying to forget. But forgetting never works, and the "desperately" part of trying turns into something else, something else that eludes definition and strikes with sharp fangs at efforts to understand it. So I try to stay perfectly still, without a single movement, petrified in the hope that this will bring people back to me. But as much as I want to freeze moments in time, they never do.
You're still here. You always will be.
Its a cold and its a broken hallelujah.
Join Date: Aug 2011
Posts: 2,887
Friend, if you have ever believed anything I have ever said, believe me when I PROMISE you, you and your beloved, will NOT be "separated by death." I can assure you, that when you cross, and go to The Light, you will be able to help her and love her still, and even more. Soul mates, are exactly that, soul mates, and our souls never , ever , ever ,ever die.
I am securely assured, that Melissa will be sharing stories with us of "how you let her know you were with her today".. Stay tuned.
And your profound love, will serve as example and proof to all who read here and beyond, that life doesn't end.
Yet another gift you will be giving this little blue dot. And this one will change more lives than you could ever imagine possible.
Mark my words.....
XO AO
I am securely assured, that Melissa will be sharing stories with us of "how you let her know you were with her today".
. Stay tuned. And your profound love, will serve as example and proof to all who read here and beyond, that life doesn't end.
Yet another gift you will be giving this little blue dot. And this one will change more lives than you could ever imagine possible.
Mark my words.....
XO AO
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