CancerCompass message board discussion started by Jilby on 5/15/2008 http://www.cancercompass.com/message-board/message/all,24059,0.htm Wed, 08 Oct 2008 00:00:00 GMT Wed, 08 Oct 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Hello,My dad is declining since having a 2nd ressection done for his GBM IV. He lives alone and is very adamant that he stay in HIS home. My brother and I have been trying to spend as much time as we can there to help him function...but the last few days he's changed. His right side is so weak, he even fell down when we weren't there. He is going to the bathroom, taking his meds (somewhat)...that we can tell and getting himself dressed etc...making his ever so loved coffee in the morning. But I really wish he'd come home with me or my brother. My aunt and uncle also invited him to live with them...until he gets stronger...is what we tell him. He was suppose to start a 2nd dose of radiation today...but I called and cancelled because I just feel he is too weak to start any of that treatment right now.I know there has to be some kind of home health care or Visiting Nurse or something that maybe we could hire to check in on him during the day. My brother and I are trying to respect his wishes so much about not going back to the hospital. He does NOT want to go. And we definitely don't want to put him in a nursing home. His mind is too there for something that dramatic.Is anyone out there using any of these resources to help them care for their loved one.Thanks,Jill Jilby Thu, 15 May 2008 00:00:00 GMT I would call your local hospice.  I know they don't step in until you stop treatment but they should be able to direct you to some health.  You could also try to check with the radiation facility.  Ours had a social worker who was very helpful and put us in contact with a support group.  Fortunately my dad already lived in our house so we basically just moved in with him from out of town but I know this disease is so humbling.  My dad is going on vacation tomorrow and hasn't been allowed to drink or drive (not at the same time but at al!) and the dr. said he could drink an afternoon cocktail and he said he felt like he got back part of his man hood.  It's so sad!!  Best of luck I know how hard it is!!  flfrog Thu, 15 May 2008 00:00:00 GMT My husband is in a more advanced stage, but yes there are agencies or individuals you can hire to look in or even stay with him several hours a day.  We are using an agency with sitters who will stay at home with him on whatever schedule you arrange, for about $18 an hour (Dallas area rate).  I think individuals would charge about half an agency rate if you could find someone reliable.  Does your neuro oncologist have a social worker?  Ours gave us a list of companies to call.  A lot of them are Certified Nurse Assistants rather than more expensive nurses, and they often have nursing home experience so they could help with more extensive duties as patients get worse,  Warning though--typical medical insurance might not cover this.   We have a Metlife long term care policy. cozymel Thu, 15 May 2008 00:00:00 GMT My husband is in advanced stage of GBM iv.  DX 12/12/06.  Since his setback in November, I have not left him alone while I worked.  He just couldn't handle the easiest tasks at times.  In February, I called the home health department asking if they had any assistance they could give me.  I was told no.  At this time I decided to take off of work because things were getting worse.  I have been off of work since February.  When I told my husband's oncologist, the nurse said that she would look into it.  Later she called to say that the hospital that we were going to didn't send people out towards our area which is 60 miles away.  So I called the health department back asking if they could help us out.  What the homehealth forgot to say to me was that I needed a doctor's referral.  As soon as my doctor got in contact with the health department, a nurse was scheduled to come to our house almost everyday.  This was considered homehealth not hospice.  Since then, I have signed papers for my husband to me in hospice.    It's the little things that we don't think of that sometimes keep us back from getting help.  Aacddd3 Thu, 15 May 2008 00:00:00 GMT Thank you for all of your messages. We found out today that my Dad is near the end of this. He can't have anymore radiation at this point because he has major brain swelling. We don't know if it's because of not taking his steroid, taking a lower dose or if the tumor is already growing back since his surgery on April 11th. They wanted to admit my Dad to the pallative care unit and I declined for him. I wanted to get him to his home...the entire way driving him there I was thinking "How in the world am I going to do this?" I did get to talk to a social worker, they are going to set up a visiting nurse type of thing. I could of had them come out on Saturday...but my dad declined that. He said Monday. So Monday they are calling me to set up a meeting and discuss what kind of visits will be available. I was told that this isn't a 24/7 care type of thing. There are services like that..but it's not covered. Does Medicare cover anything like that? I suppose in the next few days I will learn about all of our options and how things will go.One day at a time is all we can do and I just have to believe in my heart things will happen the way they are suppose too.Thanks,Jill Jilby Sat, 17 May 2008 00:00:00 GMT I am very sorry about the results.  You and your father are in my thoughts and prayers go out to you for strength for the coming days.  This is very difficult.  The doctors wanted to put my husband in a nursing home.  He's 53.  I felt he didn't need to be there.  My concern with hospice was that if I couldn't take care of him what was going to happen.  The hospice nurse told me that there is a "hospice room" at our local hospital.  I can handle that if need be, but not a nursing home.  This morning my husband couldn't understand how to move his feet to go three steps to the wheel chair with me.  This afternoon, he couldn't help raise himself from the wheelchair to get in the recliner or bed.  Each day faces another challenge.  Sometimes I am not certain how I will do it.  But I do know that I need to take care of myself, too.  Please remember this because it is necessary for us to be there for our loved one.  I can't stop what is  happening. I can be with him even if it means not being the care giver until the end.  God be with you.  Aacddd3 Sat, 17 May 2008 00:00:00 GMT So sorry to hear that your dad is doing poorly, Jillby. My prayers are with you and your brother as you face the road ahead. I've posted before about my mother's "long term" relationship with Hospice. She ended trearment in June '07, but still going strong. My mother lives in my home and my brother works second shift so he can be here when I am at work. Hospice has been an incredible support to us. Medical equipment (walker, wheelchair, shower chair), medication, weekly visit from "our angel" of a nurse, social work and clergy support and more recently, respite one day a week so that my brother can have a day off. All is covered by Medicare. I am not sure what level of support they are able to offer to clients still living in their own homes, but with the change in prognosis that you all have had since beginning this thread, maybe he is ready to accept that he needs more help?    Louzda Sun, 18 May 2008 00:00:00 GMT