care for cancer patient

Have you asked family and friends for help?  Lots of time people want to do things but need to be told. Is there a Gilda's club in your area?  Do you have a good relationship with your onc?  Can he/she suggest something?  I don't know about any other organizations so I hope someone more familiar with this can offer some suggestions.  Where exactly in NJ?  We hired some home health care workers for my aunt who lived in Perth Amboy.  They were great and a huge relief to us to know she had help. I could email my sister and find out the name of the company they worked for.

I am very sorry you are in this situation and pray that someone posts something that can help.

Fen

Have you asked family and friends for help?  Lots of time people want to do things but need to be told. Is there a Gilda's club in your area?  Do you have a good relationship with your onc?  Can he/she suggest something?  I don't know about any other organizations so I hope someone more familiar with this can offer some suggestions.  Where exactly in NJ?  We hired some home health care workers for my aunt who lived in Perth Amboy.  They were great and a huge relief to us to know she had help. I could email my sister and find out the name of the company they worked for.

I am very sorry you are in this situation and pray that someone posts something that can help.

Fen

Have you asked family and friends for help?  Lots of time people want to do things but need to be told. Is there a Gilda's club in your area?  Do you have a good relationship with your onc?  Can he/she suggest something?  I don't know about any other organizations so I hope someone more familiar with this can offer some suggestions.  Where exactly in NJ?  We hired some home health care workers for my aunt who lived in Perth Amboy.  They were great and a huge relief to us to know she had help. I could email my sister and find out the name of the company they worked for.

I am very sorry you are in this situation and pray that someone posts something that can help.

Fen

Hello,

You might consider asking about Hospice.  They have been a great help to many and they do come out to the home as well to help out.  

Judy (loving wife of Gene Stage IV and now NED)

Hello,

You might consider asking about Hospice.  They have been a great help to many and they do come out to the home as well to help out.  

Judy (loving wife of Gene Stage IV and now NED)

Hello,

You might consider asking about Hospice.  They have been a great help to many and they do come out to the home as well to help out.  

Judy (loving wife of Gene Stage IV and now NED)

Couple of thoughts:

-Go to the a American Cancer Society website and click on the Find Support and Treatment tab.

-Can your Oncologist or treatment hospital put you in touch with a Social Worker who might point you in the right direction as far as help.

-Are you a member of a church, synagogue or mosque and do you have a relationship with a local Clergy person. Perhaps they would be of additional assistance. 

I am sure you are exhausted but please give these a try and see where it takes you. The is assistance out there and you will find it. 

Couple of thoughts:

-Go to the a American Cancer Society website and click on the Find Support and Treatment tab.

-Can your Oncologist or treatment hospital put you in touch with a Social Worker who might point you in the right direction as far as help.

-Are you a member of a church, synagogue or mosque and do you have a relationship with a local Clergy person. Perhaps they would be of additional assistance. 

I am sure you are exhausted but please give these a try and see where it takes you. The is assistance out there and you will find it. 

Couple of thoughts:

-Go to the a American Cancer Society website and click on the Find Support and Treatment tab.

-Can your Oncologist or treatment hospital put you in touch with a Social Worker who might point you in the right direction as far as help.

-Are you a member of a church, synagogue or mosque and do you have a relationship with a local Clergy person. Perhaps they would be of additional assistance. 

I am sure you are exhausted but please give these a try and see where it takes you. The is assistance out there and you will find it. 

Hi Quilter, so sorry you're going through this …

If you have people around you who would help but you don't want to ask, think about setting up a page at LotsaHelpingHands.com. It would allow you to post items on a calendar and then allow your support community to sign up for them. One item to post could be "Quilter's Time Off" – perhaps that would give you enough of a break?

This is so hard to go through … I was akin to a Zombie during the first few weeks after my husband's surgery. I hope you find some resources to help you through it — but most of all I hope the Yervoy works!!

~Hazel

Hi Quilter, so sorry you're going through this …

If you have people around you who would help but you don't want to ask, think about setting up a page at LotsaHelpingHands.com. It would allow you to post items on a calendar and then allow your support community to sign up for them. One item to post could be "Quilter's Time Off" – perhaps that would give you enough of a break?

This is so hard to go through … I was akin to a Zombie during the first few weeks after my husband's surgery. I hope you find some resources to help you through it — but most of all I hope the Yervoy works!!

~Hazel

Hi Quilter, so sorry you're going through this …

If you have people around you who would help but you don't want to ask, think about setting up a page at LotsaHelpingHands.com. It would allow you to post items on a calendar and then allow your support community to sign up for them. One item to post could be "Quilter's Time Off" – perhaps that would give you enough of a break?

This is so hard to go through … I was akin to a Zombie during the first few weeks after my husband's surgery. I hope you find some resources to help you through it — but most of all I hope the Yervoy works!!

~Hazel

Quilter, I am very sorry for what you and your husband are going through. I know how stressful and exhausting this can be. I am so glad that you realize that you can't continue to do this without help– nobody can or should. It sounds like it is time now for you to really put some time and effort into finding people and organizations that you help you out. There are probably more resources out there than you realize but you have to find them and reach out to them. 

You have already gotten some good suggestions here. I have a few others for you:

1. The most helpful person to me was a hospital social worker. Not all hospital social workers (each department in this hospital had their own social worker) but one of them. She gave me a list of free medial transport services that would take my brother to his routice doctor's appointments. She actually fillout and submitted the paperwork for him to visits from the county healhtcare agency nurse twice a week. She arranged for my brother to get in-home hospice care (an automatic acceptance since he had Stage IV melanoma) which was incredibly helpful. I could go on and on. So talk to the social workers affiliated with your husband's medical team.

2. Get someone to sit with your husband for 3 or 4 hours once a week while you go out. I got out every Sunday afternoon for a few hours just for some "me" time. I went to the horseraces or went shopping or to the aquarium– whatever I wanted to do just for a few hours. That helped a lot. You could ask a friend or family memeber, a neighbor, or a church member. Pay them if you have to. Our hospice had volunteers who would come stay with patients to provide this "respite" care. They were angles! 

3. You will probably have to cobble together little bits of help from several different people. The county nurse took over the task of setting up my brother's complex pill box each week– one chore I no longer had to do. Our neighbor put our trash on the curb and brought in the empty cans. etc etc. There probably will not be one person or organization who will step in a fix everything, but serveral different people can get a lot of things done. 

4. I'm sure that there are a lot of people you know who would be willing to help if they knew exactly what you need. I think that most people who say, "Let me know what I can do to help." mean exactly that. They need you to tell them. We had a great thread about getting help a few months ago. You can read it here. http://www.melanoma.org/find-support/patient-community/mpip-melanoma-patients-information-page/sweet-and-thoughtful-holiday

5. Lastly, if your husband really needs help 24/7– if you have to get up to help him to the bathroom or get his pain meds during the night and so on– that is a level of care that needs professional intervention. You simply are not physically or professionally qualified to handle it. Again, working with hospital or hospice social workers, he may need to go into a nursing home or rehab hospital until his condition improves. That is what they are there for. My brother's condition improved markedly when he got nursing home care. He didn't like being there, of course, but his brain tumors were making him fall a lot and he was beginning to wander outside at night. I found myself sleeping with one ear open all the time listening for him to need help. That was time for professional intervention.  

You know, it wasn't that long ago in human history that when people got a terminal illness they died quickly. Yes, they stayed at home and family cared for them, but the cancer or heart disease or failing kidneys or whatever took them within 2 or 3 months. Medicine has improved a lot especially in the last few decades. People can be very, very sick and weak but still survive for months or years. While we are, of course, delighted that our loved ones are surviving, the strain on families can be incredible. We need to reach out for support and assistance so that the patient as well as the caregivers can have the best quality of life as possible. 

Quilter, I am very sorry for what you and your husband are going through. I know how stressful and exhausting this can be. I am so glad that you realize that you can't continue to do this without help– nobody can or should. It sounds like it is time now for you to really put some time and effort into finding people and organizations that you help you out. There are probably more resources out there than you realize but you have to find them and reach out to them. 

You have already gotten some good suggestions here. I have a few others for you:

1. The most helpful person to me was a hospital social worker. Not all hospital social workers (each department in this hospital had their own social worker) but one of them. She gave me a list of free medial transport services that would take my brother to his routice doctor's appointments. She actually fillout and submitted the paperwork for him to visits from the county healhtcare agency nurse twice a week. She arranged for my brother to get in-home hospice care (an automatic acceptance since he had Stage IV melanoma) which was incredibly helpful. I could go on and on. So talk to the social workers affiliated with your husband's medical team.

2. Get someone to sit with your husband for 3 or 4 hours once a week while you go out. I got out every Sunday afternoon for a few hours just for some "me" time. I went to the horseraces or went shopping or to the aquarium– whatever I wanted to do just for a few hours. That helped a lot. You could ask a friend or family memeber, a neighbor, or a church member. Pay them if you have to. Our hospice had volunteers who would come stay with patients to provide this "respite" care. They were angles! 

3. You will probably have to cobble together little bits of help from several different people. The county nurse took over the task of setting up my brother's complex pill box each week– one chore I no longer had to do. Our neighbor put our trash on the curb and brought in the empty cans. etc etc. There probably will not be one person or organization who will step in a fix everything, but serveral different people can get a lot of things done. 

4. I'm sure that there are a lot of people you know who would be willing to help if they knew exactly what you need. I think that most people who say, "Let me know what I can do to help." mean exactly that. They need you to tell them. We had a great thread about getting help a few months ago. You can read it here. http://www.melanoma.org/find-support/patient-community/mpip-melanoma-patients-information-page/sweet-and-thoughtful-holiday

5. Lastly, if your husband really needs help 24/7– if you have to get up to help him to the bathroom or get his pain meds during the night and so on– that is a level of care that needs professional intervention. You simply are not physically or professionally qualified to handle it. Again, working with hospital or hospice social workers, he may need to go into a nursing home or rehab hospital until his condition improves. That is what they are there for. My brother's condition improved markedly when he got nursing home care. He didn't like being there, of course, but his brain tumors were making him fall a lot and he was beginning to wander outside at night. I found myself sleeping with one ear open all the time listening for him to need help. That was time for professional intervention.  

You know, it wasn't that long ago in human history that when people got a terminal illness they died quickly. Yes, they stayed at home and family cared for them, but the cancer or heart disease or failing kidneys or whatever took them within 2 or 3 months. Medicine has improved a lot especially in the last few decades. People can be very, very sick and weak but still survive for months or years. While we are, of course, delighted that our loved ones are surviving, the strain on families can be incredible. We need to reach out for support and assistance so that the patient as well as the caregivers can have the best quality of life as possible. 

Quilter, I am very sorry for what you and your husband are going through. I know how stressful and exhausting this can be. I am so glad that you realize that you can't continue to do this without help– nobody can or should. It sounds like it is time now for you to really put some time and effort into finding people and organizations that you help you out. There are probably more resources out there than you realize but you have to find them and reach out to them. 

You have already gotten some good suggestions here. I have a few others for you:

1. The most helpful person to me was a hospital social worker. Not all hospital social workers (each department in this hospital had their own social worker) but one of them. She gave me a list of free medial transport services that would take my brother to his routice doctor's appointments. She actually fillout and submitted the paperwork for him to visits from the county healhtcare agency nurse twice a week. She arranged for my brother to get in-home hospice care (an automatic acceptance since he had Stage IV melanoma) which was incredibly helpful. I could go on and on. So talk to the social workers affiliated with your husband's medical team.

2. Get someone to sit with your husband for 3 or 4 hours once a week while you go out. I got out every Sunday afternoon for a few hours just for some "me" time. I went to the horseraces or went shopping or to the aquarium– whatever I wanted to do just for a few hours. That helped a lot. You could ask a friend or family memeber, a neighbor, or a church member. Pay them if you have to. Our hospice had volunteers who would come stay with patients to provide this "respite" care. They were angles! 

3. You will probably have to cobble together little bits of help from several different people. The county nurse took over the task of setting up my brother's complex pill box each week– one chore I no longer had to do. Our neighbor put our trash on the curb and brought in the empty cans. etc etc. There probably will not be one person or organization who will step in a fix everything, but serveral different people can get a lot of things done. 

4. I'm sure that there are a lot of people you know who would be willing to help if they knew exactly what you need. I think that most people who say, "Let me know what I can do to help." mean exactly that. They need you to tell them. We had a great thread about getting help a few months ago. You can read it here. http://www.melanoma.org/find-support/patient-community/mpip-melanoma-patients-information-page/sweet-and-thoughtful-holiday

5. Lastly, if your husband really needs help 24/7– if you have to get up to help him to the bathroom or get his pain meds during the night and so on– that is a level of care that needs professional intervention. You simply are not physically or professionally qualified to handle it. Again, working with hospital or hospice social workers, he may need to go into a nursing home or rehab hospital until his condition improves. That is what they are there for. My brother's condition improved markedly when he got nursing home care. He didn't like being there, of course, but his brain tumors were making him fall a lot and he was beginning to wander outside at night. I found myself sleeping with one ear open all the time listening for him to need help. That was time for professional intervention.  

You know, it wasn't that long ago in human history that when people got a terminal illness they died quickly. Yes, they stayed at home and family cared for them, but the cancer or heart disease or failing kidneys or whatever took them within 2 or 3 months. Medicine has improved a lot especially in the last few decades. People can be very, very sick and weak but still survive for months or years. While we are, of course, delighted that our loved ones are surviving, the strain on families can be incredible. We need to reach out for support and assistance so that the patient as well as the caregivers can have the best quality of life as possible.