› Forums › Caregiver Community › But you look fine
- This topic has 9 replies, 3 voices, and was last updated 7 years, 3 months ago by
blessd4x.
- Post
-
- January 3, 2017 at 2:27 am
I haven’t posted for awhile because I didnt want to post negatively on a board that provides so much good info for people battling melanoma.My husband is battling an explosion of melanoma including the frontal and parietal lobes of the brain and has gone on hospice 11-23-16. With his current condition he gets confused easily and must stay pretty much on a single track mindset, thinking one thing at a time. He gets frustrated and irritated with anything else to the point that he is withdrawing and starting to avoid conversation with others…especially when others are aware of his situation but choose to ignore it. He asked me this evening “How can I get people to understand what I’m dealing with?” I have no answers. It’s easy for me to say “Just ignore them” but that answer is really no help. I can talk to the social worker at hospice or the cancer center about it but I wondered if anyone has any links for caregiver reading in a hospice situation they might share.
- Replies
-
-
- January 3, 2017 at 3:27 am
Cathy,
A cancer support group, whether face to face or online , must be genuine to be relevant to be of any true value.
That includes the good, the bad and the ugly; so make no apologies for talking about the pragmatic aspects of end stage melanoma here.
Hospice should be offering you and your husband more support. Do not be shy about stomping your foot up the chain of command there to get what you need.
The SOLE job of Hospice is to make end of life as comfortable as possible, respectfull and dignified for patient and family.
There is no link, but I can personally tell you that my girlfriend died in my arms from complications of melanoma a bit more than ten years ago and was under hospice care.
Even up until the last minute when she was in the bedroom and others were in the living room , some were saying she looks like a million bucks while others were saying they just didn't get it…………..looks okay to them.
Tell Hospice how you feel and tell them you need more support…………………and of course, continue to reach out here.
It may not be of much help, but I really DO get what you and your husband are saying, and I really DO understand your frustration.
So go kick a little butt at Hospice.
Charlie S
-
- January 3, 2017 at 6:11 am
Thanks Charlie S. I DO believe you understand and that’s a tremendous help. I’m also truly sorry for your loss. I’m a foot stomper from way back so Tuesday AM I’ll be asking questions and getting answers. We’ve been so realistic about this journey from the beginning … I just think some folks don’t want to go there. They want to keep life unruffled because they can in their world. The world of melanoma is a different place to be. Fighting it head on has been and will continue to be our only way to truly deal with it. Thanks again. -
- January 3, 2017 at 6:11 am
Thanks Charlie S. I DO believe you understand and that’s a tremendous help. I’m also truly sorry for your loss. I’m a foot stomper from way back so Tuesday AM I’ll be asking questions and getting answers. We’ve been so realistic about this journey from the beginning … I just think some folks don’t want to go there. They want to keep life unruffled because they can in their world. The world of melanoma is a different place to be. Fighting it head on has been and will continue to be our only way to truly deal with it. Thanks again. -
- January 3, 2017 at 6:11 am
Thanks Charlie S. I DO believe you understand and that’s a tremendous help. I’m also truly sorry for your loss. I’m a foot stomper from way back so Tuesday AM I’ll be asking questions and getting answers. We’ve been so realistic about this journey from the beginning … I just think some folks don’t want to go there. They want to keep life unruffled because they can in their world. The world of melanoma is a different place to be. Fighting it head on has been and will continue to be our only way to truly deal with it. Thanks again.
-
- January 3, 2017 at 3:27 am
Cathy,
A cancer support group, whether face to face or online , must be genuine to be relevant to be of any true value.
That includes the good, the bad and the ugly; so make no apologies for talking about the pragmatic aspects of end stage melanoma here.
Hospice should be offering you and your husband more support. Do not be shy about stomping your foot up the chain of command there to get what you need.
The SOLE job of Hospice is to make end of life as comfortable as possible, respectfull and dignified for patient and family.
There is no link, but I can personally tell you that my girlfriend died in my arms from complications of melanoma a bit more than ten years ago and was under hospice care.
Even up until the last minute when she was in the bedroom and others were in the living room , some were saying she looks like a million bucks while others were saying they just didn't get it…………..looks okay to them.
Tell Hospice how you feel and tell them you need more support…………………and of course, continue to reach out here.
It may not be of much help, but I really DO get what you and your husband are saying, and I really DO understand your frustration.
So go kick a little butt at Hospice.
Charlie S
-
- January 3, 2017 at 3:27 am
Cathy,
A cancer support group, whether face to face or online , must be genuine to be relevant to be of any true value.
That includes the good, the bad and the ugly; so make no apologies for talking about the pragmatic aspects of end stage melanoma here.
Hospice should be offering you and your husband more support. Do not be shy about stomping your foot up the chain of command there to get what you need.
The SOLE job of Hospice is to make end of life as comfortable as possible, respectfull and dignified for patient and family.
There is no link, but I can personally tell you that my girlfriend died in my arms from complications of melanoma a bit more than ten years ago and was under hospice care.
Even up until the last minute when she was in the bedroom and others were in the living room , some were saying she looks like a million bucks while others were saying they just didn't get it…………..looks okay to them.
Tell Hospice how you feel and tell them you need more support…………………and of course, continue to reach out here.
It may not be of much help, but I really DO get what you and your husband are saying, and I really DO understand your frustration.
So go kick a little butt at Hospice.
Charlie S
-
- January 5, 2017 at 6:59 pm
I get that too. Oh your husband looks good. Mhm.. for stage IV. How do I take that. Yes, he still walks around, tries to be playful and interact with family. But do you see him losing weight? Do you see the rash from the opdivo? Do you hear him wimper from his head hurting, his coughing, his joints hurting? Do you see my bathroom that looks like a Pharmacy? Do you see the look in his eyes each night? Ya, he looks great. Oh and one more customer that says Oh, Melanoma? Just skin cancer.. I had several spots taken off.. I think I will punch them in the throat.
Im sorry for what youre going through. Youre not alone Love.
Prayers
R
-
- January 5, 2017 at 6:59 pm
I get that too. Oh your husband looks good. Mhm.. for stage IV. How do I take that. Yes, he still walks around, tries to be playful and interact with family. But do you see him losing weight? Do you see the rash from the opdivo? Do you hear him wimper from his head hurting, his coughing, his joints hurting? Do you see my bathroom that looks like a Pharmacy? Do you see the look in his eyes each night? Ya, he looks great. Oh and one more customer that says Oh, Melanoma? Just skin cancer.. I had several spots taken off.. I think I will punch them in the throat.
Im sorry for what youre going through. Youre not alone Love.
Prayers
R
-
- January 5, 2017 at 6:59 pm
I get that too. Oh your husband looks good. Mhm.. for stage IV. How do I take that. Yes, he still walks around, tries to be playful and interact with family. But do you see him losing weight? Do you see the rash from the opdivo? Do you hear him wimper from his head hurting, his coughing, his joints hurting? Do you see my bathroom that looks like a Pharmacy? Do you see the look in his eyes each night? Ya, he looks great. Oh and one more customer that says Oh, Melanoma? Just skin cancer.. I had several spots taken off.. I think I will punch them in the throat.
Im sorry for what youre going through. Youre not alone Love.
Prayers
R
-
Tagged: caregiver
- You must be logged in to reply to this topic.