We have asked the hospital to arrange for my dad to come home. He has been through bypass surgery, kidney infections, colon resection due to a mass connected to bladder and small intestine. He has been in the hospital since 4/3 laying in bed. He won't eat. Drinks very little. He has given up. Last Friday he had problems arise from his heart and liver that sent him into ICU for a while. The doctors have all said that with this all he is very week. So, since he can get the same care at home as he can in the hospital, we are taking him home. What does Hospice do? Will there be someone to help with taking care of him.? What about expense.
Since I'm not sure where you are located, I can tell you that I have, as a hospital social worker, had enormous success with Hospice. In my area, they are absolutely instrumental in creating a smooth transition for one helping environment to anther. Here, in the Florida Gulfcoast, a patient can either go to a Hospice facility or home with Hospice services.
The very first thing that will need to happen is that the dr will need to write an order for a Hospice consultation. (YOu should have already been in contact with hospital social worker who can also advise you.)
A coordinator with Hospice (if you decide to take dad home) will facilitate ordering all medications, equipment (a hospital bed, commode, IVs,) and services (nurse, aides, and social workers). I anticipate that someone from your family will be home with your dad in addition to the Hospice help.
The other thing that Hospice will do is that they can provide incredible support for other family members so that you all can focus on your dad. If there are young grandchildren, or grandchilden of any age, Hospice services can help the young ones deal with the passing.
As you father declines, Hospice can generally increase the number of persons they have assisting you in the home.
Hospice is another service of Medicare and all services should be billed through Medicare and, if you have benefits under your father's supplemental police, you assist with co-pay issues.
I do want to emphasize that, while in our area, which is heavily populated, there are a great number of volunteers and licensed professionals from which Hospice has to draw. If you are in a rural area, this may be difficult.
ANywyay, tell the nurse or speak directly to the dr about the referral and that should get things going.
Finally, I know that this is a terribly hard time for you. Keep us posted here and let us know how else we can be of help. My prayers and thoughts are with you; keep your thoughts on the beautiful for they with strengthen and sustain you. chris
Last edited by last1; 05-13-2005 at 12:37 PM.
My dad passed away 3 weeks ago from cancer and died at home. I live in Connecticut and we had Hospice and was not very happy with them. I have heard wonderful things about hospice in Florida (my aunt lives in Florida and hospice was wonderful for my uncle). I guess they vary from state to state but my brother and I were pretty much on our own taking care of my dad. My dad was 61. My mom passed away 5 years ago. The doctor has to prescribe Hospice and insurance should cover it. I will keep you in my thoughts...keep us posted.
Thank you for your repsonses. This was very good information. The doctor placed the order for Hospice on Friday. They have already completed the consult. The nurse at the hospital told mom on Saturday to begin making funeral arrangements. She said that he is collected a great deal of fluid in his body and very little output of urine. She said his platelets are break apart. His skin is breaking down. My mom had a breakdown yesterday. She is trying to decide about what to do to prepare for him coming home. She was talking about what to do about his "things", what she is going to do without him, etc. I took my daughters to see him yesterday. The oldest is graduating on Thursday. So, she work her cap and gown for him and all her honor cords.
Your best bet would be to make pre-funeral arrangements as hard as it is. If he passes away at home at night, the nurse or family member will call the funeral home and they will come no matter what time it is. I feel your family's pain as I just went through it. I wish there was something I could do.....
Thank you all for your help. I do not think we will need Hospice after all. Daddy's kidneys and liver are pretty much shut down. They are now giving him pain meds on a continuing basis and anytime he asks. Soon the build up of this in his liver will slow his respiration and eventually his heart. So, they are actually helping him die in peace as he wished. He said many times he just wanted to close his eyes and go to sleep and then die. It appears he will have his way.
dear debdaniel: know that our thoughts and prayers are with you and your family. Remember we are here to provide whatever supportive assistance you may need. Blessing to you, your parents and your wonderful family. chris
God bless you all for your support and kind words. Dad's BP was 48 yesterday. And that was when they could manage one. I asked 48 top or bottom number. She said both. His pulse was about 120. His lungs are clear but his urine output is about 2 tablespoons for a 24 hour period. He moans and cries out loud at times. He is constantly moving his arms, reaching in the air. He skin is so thin that he is covered in skin tears and sores. I spent all day Saturday with him and part of Sunday. I worked yesterday until the afternoon. I went and releived my brother about 4 p.m. and stayed until 8:30 p.m. I again was there this a.m. about 6:45 a.m. Unfortunately, I had to leave to go to work about 8:00. I was already late for work.
I want to be with him all the time. I hurt at thinking of him not having family with him when he does pass. But, I am past exhaustion. The desire and need to be with him is also wearing me down. I don't see how he keeps going. I told him again and again to try to relax and when God sends His angels, he is to go with them. We will be ok.
Dear debdaniel: I think you have done just about all that you can. Frequently, when we give family permission to pass on, then they do. And some, for whatever reason, do not. Is your father at home? Is he a facility? I know that last time you were considering taking him home with hospice assistance but I'm not sure of the outcome of that desire. Let me know what we can do for you. Our thoughts and our prayers remain with you. chris
I'm sorry, though every situation is different I can imagine how difficult this is. Your father would understand that you cannot possibly be there by his side constantly. He'd want you to take care of yourself and follow through with your responsibilities the best that you can.
My grandmother died in hospice of a very aggressive form of cancer, and her lack of urine output was the signal that she was near the end. Her kidney failure was due to cancer (the cancer released toxins that damaged her kidneys) so the situation may not be the same as in your father's case, but just so you know it was a very short time she was with us after her urine output dropped to that level.
I appreciate all your kind words. Daddy died later in the day on Tuesday, July 5. I had spoke with my mother about 1 p.m. She said that dad had not cried out in pain during his bed change. I knew there was something wrong as he could not be touched without crying out in pain. I put socks on him earlier that day and he did not make a sound.
I left work and called my brother and sister. We were all with dad for several hours. I noticed his breathing had slowed considerably and told mom she could go home, we would be there until the night nurse came on. I knew dad was gone already. His body was cold to touch. Not just his hands and knees, but all of his body. I knew she could not bear to be with him when he died. My brother left shortly after mom. About 30 mins. later dad was stopping between breaths for long periods. I told my sister that he was stopping breathing. I got the nursing home nurse and we watched as he took his last breaths. My sister cried, kissed him, held him. It was so special yet so surreal. I spent about an hour with him and left shortly before the funeral home arrived. My brother was with him when they arrived to take dad.
I will say that I was so upset by the actions of the hospice nurse. She was in dad's room about 45 mins. before dad died. She told me and my brother that dad was gone and it was just a matter of time before the breathing stopped. She knew it was very near. Yet, she left the nursing home without telling us or the nurses. We were alone when he passed. I had to talk to the funeral home on the phone. All this time, I expected Hospice would be there for support. They were not.
Hospice has its ups and down... I had my father on it for a while... But for some unknown reason he was taken off... The admistration never even told us till weeks later. They are still trying to be as if he was being see my hospice..... So I am not sure I would recommend then... There is other agency, maybe like a home care type thing etc.... Good luck.
I just want to say Im sorry for all that everyone is going through or have gone through. My mother is under hospice care herself. Your right when you say there are up's and downs. However you do have the right to request another Hospice nurse if you are not happy with the one you want.
We have been so lucky with my mothers two hospice nurses I cant say enough good things about them or the others who have helped us.
I think its important to understand you can request another nurse find one that fits your needs. We had gone through a few before we found our Hospice Angels..
If all goes according to plan -- we will all die orphans
Hospice Made All The Difference... Thank You
Charles H. Randall was my father and he used to tell me that if everything went according to plan we would all die orphans. A few minutes before 5:00 oíclock on the morning of July 20th half of the plan came to pass as he slipped quietly from this world into the next.
My father used to joke that there was no problem so big or complex that you couldnít walk away from it. In the past that is how I had dealt with death -- by avoiding it, by not thinking about it and by pretending it wasnít happening. None of those strategies would work this time. My father was dying at home attended by his family and children. Aggressive treatment had given way to hospice care. Unless you are hit by a bus, death is a process rather than an event.
Frankly, I was terrified. I was afraid would fail my father. I was afraid of being afraid. In addition to the fear of letting down my dad I was scared that I would let down my wife and two children who were also present.
Dad had been a professor of drama at Ithaca College and Fresno State University. He had written and published several plays and had quite a bit of experience dealing with fear and stage-fright. He had once told me the best way to deal with fear was to hold onto it for a moment, acknowledge it and then fold it up and put it in your back pocket and do the best you can.
Charles lived in California in a place called Arroyo Grande (latterly translated from Spanish to English as ĎBig Ditchí). Several months ago he was diagnosed with inoperable stomach cancer. Extended chemo and radiation treatment failed to halt the spread of his cancer. His condition was terminal.
My family and I made arrangements to visit him in mid-August. Our schedule changed as his condition deteriorated more quickly than expected. We flew out to be with him on July 8th. The plan was to spend the first few days with my dad and then take my wife and two kids on a tour of the state and finish off the vacation by spending the last few days visiting with my dad before returning home to Kingston.
My dad was in his eighties. Before he got sick, he had the strength appearance of a man in his late fifties or early sixties. When I saw my father I was shocked. A man once so strong and healthy had been reduced to a shadow and he needed the help of a walker to get around. The first few visits were a bit awkward but went reasonably well. Most of the conversation was small talk. Death and dying were taboo subjects and each of us avoided talking about the elephant in the room. Death may have been approaching but it seemed a long way away. None of us realized he had less than a week to live.
After a few days with dad, my family and I left Arroyo Grande and set off to explore California and spend time at Bass Lake, just north of Fresno. Not more than four days into our tour I got an urgent call to return as quickly as possible. Dad had been hospitalized and was being discharged the next day to in-home hospice care.
When we arrived everything had changed. The Lazy-boy rocker had been replaced by an electric hospital bed. My dad was fairly responsive and in remarkably good spirits as he drifted in and out of sleep. The next 72 hours passed in a blur. The last three days of my fatherís life were the most difficult and rewarding Iíve ever lived. It was an emotional roller coaster ride which challenged the beliefs, values, and assumptions which defined me as a person.
The hospice team was on hand to help us prepare for the coming days. They explained what was happening -- dad was dying and his body had begun to shut down. Moments in which he was awake and responsive would become less and less frequent and within the next day or so he would slip into a coma which would gradually deepen. If we had any plans to say our good-bys, now was the time to say them.
Each member of the family took turns talking with dad. We told stories, we recalled events great and small. We laughed and we cried -- sometimes doing both at once.
We told him we loved him and we sat for hours just holding his hand. One of us on each side of the bed. I had my digital camera in the car but I was determined not to take any pictures. I didnít want to remember dad in this condition.
My resolve to avoid pictures was overturned when Betty (his wife) and my sister pleaded for a photo. Dad asked for a beer and we had our picture taken as we toasted love and family. It was his last beer and it turned out to be the last picture ever taken of my dad.
As the day drew to a close I took my dadís hand as he slept and kissed him on the forehead and told him I loved him. As I turned to walk away he woke for a moment and said, ďI love you too.Ē They were the last words he was to speak. The next day dad was in a coma and was unable to talk, but he could respond by squeezing his hand as we held it or by arching his eyebrows.
My two children were remarkable. Without prompting they each took their turn and sat with dad for hours at a time. The gentleness and maturity that my 12-year old daughter and 15-year old son showed as they comforted their dying grandfather made me proud beyond words.
During breaks in our vigils we talked about what was happening to my dad. I explained that the rainbow of life had birth at one end and death at the other. Dying was as natural as being born and one way or another everyone dies. I told them that the quality of life isnít measured by its length but rather by its width. Itís the number of lives you touch and the amount of love you share.
At one point my son expressed his frustration -- ďWhy are we here? What good are we doing? He canít hear us -- whatís the point?Ē I told him it was like seeing someone off on a bus trip. You donít leave the station after your friend boards the bus. You wait for the bus to leave before you go home. In dadís case, heís on the bus but it hasnít left yet.
On the third day dadís coma had deepened and his breathing had became more labored. We stayed with him throughout the day and long into the evening. By midnight I was dead on my feet. Dadís breathing had appeared to stabilize and it seemed safe to return to the hotel to grab a few hours of sleep. With tears streaming down her cheeks my daughter begged for the opportunity to stay with my dad through the night. I didnít want her to remain without me but as I looked into her eyes I saw a determination that would not be deterred. My wife and I relented and we allowed her to stay. As we left I asked Betty and my sister to give me a call if his condition changed.
As exhausted as I was, I did more tossing and turning than sleeping. At 5 oíclock the phone rang with the news my dad had just died.
My daughter had been at his side holding his hand as he took his last breath. The whole experience brought us all closer to each other and taught us all the value of life and love. I left on vacation with two children. I returned with two kids -- no longer children but not yet adults. I have no doubt that they will be able to face what ever life has to offer with the same courage and dignity that marked my fatherís life.