an update on Ed

lindadanis
lindadanis Member Posts: 235
edited March 2014 in Esophageal Cancer #1
Well Hospice has been in for a week today, not too impressed!!! They are very short staffed, two social workers, one going out this week for about a month due to medical leave, that leaves one social worker for 67 familities currently in hospice. We see our male doctor every other day, approx 30 minutes, talks to Ed, checks him out and leaves. He has been late every appt., says he will be at house at a certain time, calls and says he is running late, sometimes two hours behind. One shower in a week/ short on aides, I cannot figure this out, is thi usual for hospice? I like our nurse however, he is working for hospice just weekends but says " I can get him anytime, he is on per diam with them}. I thought I was going to have alot of help and have found out in one weeks time, I think I am wrong. We have not yet met a social worker either. any advice.

Ed is not drinking nor eating much, sleeps alot of the time, dehydration is a big problem.
Stays in his room, needs diana or I to get out of bed, hospice is afraid he will take a fall again.

Linda

Comments

  • ndmp
    ndmp Member Posts: 36
    #2
    Hospice
    Linda,

    I am so sorry to hear all that you are going through. Your experience with Hospice sounds some what like ours. I hate to sound negative about Hospice, many have so many wonderful things to say about Hospice but I can't share in that opinon.
    Our experience with Hospice was poor. My parents met with different Hospice groups in the hospital when my father was told that Hospice needed to be called. My parents chose one over the other because this Hospice group promised everything.
    They were told that Hospice would start that day and the bed and all the equipment would be delivered, it was but and here is the big but. The potty chair was not set up and I know this sounds crazy but it should have been set to his height, we were not in the frame of mind to think, the 02 was sent but neglected to send the water that needed to go with it, They promised an aid 7 days a week well they don't work on weekends when I called to speak to the manager in charged they denied this and said the rep should have never said this. The night my father passed my mother called requesting someone to come out and help because she knew something was wrong they denied her, not to mention that day the nurse couldn't come because she didn't want to have to deal with trafic because there was a road closed. When my mother called to say my dad had passed she was told the nurse that would come would be there when she could because of where she lived. I thought they were the terrible. Forgot to mention we called for the chaplin to come out and speak with my dad they came for 2 min. spoke to him we requested that they pray with him that didn't happen, the chaplin called ag=fter dad passed and I questioned her and she said "Oh she thought about it but it was just their first meeting" well there was no time for a second he passed so quickly.
    I hope others have had better experiences, I have talk to other people and they have had good and bad to say about Hospice.
    My thoughts and prayers are with you and your family. It is such a difficult time that you are going through. If you need to talk just e-mail me I will call you.
    Hugs
    Nicole
  • Tina Blondek
    Tina Blondek Member Posts: 1,500 Member
    #3
    Oh Linda!!!!
    Will it ever
    Oh Linda!!!!
    Will it ever get better? I am so sorry. Where do you live? Is there another kind of agency you can contact? My gosh! Ed will be in the hospital again soon if he is so dehydrated. This is what happened to my dad...but he never made it to the hospital. He fell out of his recliner, said help me, help me, we put his head on a pillow and he passed away. Poor Ed. He must be going crazy. Please contact the ACS and see what they suggest. Keep us up to date. Praying for all of you.
    Tina
  • Unknown
    Unknown
    #4
    This comment has been removed by the Moderator
  • Lylesmyprince
    Lylesmyprince Member Posts: 130
    #5
    unknown said:

    This comment has been removed by the Moderator

    My experience
    Dear Linda,

    My experience with Hospice was very different. They were there for me...ordering the right equipment, cleaning Lyle up, caring for his medical needs, giving us supplies beyond what we needed, etc. I agree with Sherri...maybe you need to contact another agency. We only saw the doctor once...but he was available whenever we would need him. There wasn't much of a need for the doctor in the end. They always made sure we had all the medications we needed to keep Lyle comfortable. They had everything delivered to the house so we didn't have to leave. They made sure I was prepared for the end and helped me figure out what I was going to do with Lyle's body when he passed away. I'm grateful for what they had to offer me...because when you are in the middle of this...you cannot see far beyond your loved one. I'm sorry this hasn't been that helpful for you. I think of you often...

    Love,
    Susie
  • Unknown
    Unknown
    #6
    This comment has been removed by the Moderator
  • lindadanis
    lindadanis Member Posts: 235
    #7
    unknown said:

    This comment has been removed by the Moderator

    thanks William
    thanks again for your kind words and support. yes, it has been a difficult road right from the beginning of this nightmare and probably will be to the end William. I am not satisfied with Hospice but hopefully it will change as the days go on. My nurse, named Mike, works for hospice weekends only,does per diam during the week. It seems to me that they are very short staffed, do not want to pay overtime as I have heard from some of them and certainly do not have enough workers in their company. I will bark and bark and make sure that Ed is being taken care of properly, he deserves it as all hospice patients do. We are getting an aide set up for next week, two appt's have been made, that is somewhat progress. My nurse seems to be stepping up the plate a little more. I am not one to sit quietly and let them get away with anything. patients deserve the best and it is us, the caregivers, that must demand it. I did read your article William and I am not surprised any the cutbacks, everyone is doing it. I am on the same page as you and I pray that my poor Ed will not suffer. He stays in bed most of the time, we have a new recliner that hospice did put in his room, and hopefully we can get him out of bed and into the chair today. This has to be the saddest days of my life, I cannot even imagine Ed not being with us, he was my support system, my best friend for 25 years, and I just want him to go peacefully without any pain, with Diana and myself at his side. I always knew this day would come, but when you hear the word "hospice" to get this pit in your stomach because now the "hope" has been taken away.
    I pray everyday, I talk to God everyday and I know he is hearing me.

    Thanks to all who have written and I will continue to keep you updated.

    Love,

    Linda
  • Tina Blondek
    Tina Blondek Member Posts: 1,500 Member
    #8
    lindadanis said:

    thanks William
    thanks again for your kind words and support. yes, it has been a difficult road right from the beginning of this nightmare and probably will be to the end William. I am not satisfied with Hospice but hopefully it will change as the days go on. My nurse, named Mike, works for hospice weekends only,does per diam during the week. It seems to me that they are very short staffed, do not want to pay overtime as I have heard from some of them and certainly do not have enough workers in their company. I will bark and bark and make sure that Ed is being taken care of properly, he deserves it as all hospice patients do. We are getting an aide set up for next week, two appt's have been made, that is somewhat progress. My nurse seems to be stepping up the plate a little more. I am not one to sit quietly and let them get away with anything. patients deserve the best and it is us, the caregivers, that must demand it. I did read your article William and I am not surprised any the cutbacks, everyone is doing it. I am on the same page as you and I pray that my poor Ed will not suffer. He stays in bed most of the time, we have a new recliner that hospice did put in his room, and hopefully we can get him out of bed and into the chair today. This has to be the saddest days of my life, I cannot even imagine Ed not being with us, he was my support system, my best friend for 25 years, and I just want him to go peacefully without any pain, with Diana and myself at his side. I always knew this day would come, but when you hear the word "hospice" to get this pit in your stomach because now the "hope" has been taken away.
    I pray everyday, I talk to God everyday and I know he is hearing me.

    Thanks to all who have written and I will continue to keep you updated.

    Love,

    Linda

    Linda Ed and Diana
    God bless
    Linda Ed and Diana
    God bless you, keep you, and give you peace at this most difficult time.
    Love,
    Tina
  • JimsBrother
    JimsBrother Member Posts: 94
    #9
    Tina Blondek said:

    Linda Ed and Diana
    God bless
    Linda Ed and Diana
    God bless you, keep you, and give you peace at this most difficult time.
    Love,
    Tina

    Hospice
    I'm so sorry you are having such a difficult time with hospice. My experience with our county Hospice was excellent with both family members that needed them. It's unbelievable that people doing a job that requires compassion, can do it with so little of it. People like that have no business doing it.

    I've read many of your posts and updates. Having lost our father under similar circumstances I know how heavy your hearts must be. I just want to let you know my heart is with you at this difficult time.

    May God touch you and your family and ease your suffering.

    God Speed Ed.

    Sincerely,
    Rob
  • lindadanis
    lindadanis Member Posts: 235
    #10
    JimsBrother said:

    Hospice
    I'm so sorry you are having such a difficult time with hospice. My experience with our county Hospice was excellent with both family members that needed them. It's unbelievable that people doing a job that requires compassion, can do it with so little of it. People like that have no business doing it.

    I've read many of your posts and updates. Having lost our father under similar circumstances I know how heavy your hearts must be. I just want to let you know my heart is with you at this difficult time.

    May God touch you and your family and ease your suffering.

    God Speed Ed.

    Sincerely,
    Rob

    therapy, etc.
    Yes I am seeing a therapist as is my daughter. We have been seeing her since Ed's diagnosis last October. I do understand that he is feeling out of control, that he has lost control of almost everything in his life, however, this does not give him the right to treat his family like crap. I am dealing with a man who also has a brain met and I believe this may be causing some of his problems in the past few months but certainly not the past year.
    I love my husband dearly, we just renewed our wedding vows, we have been married 25 years and the man that I am living with today is not the man I married. thank you rob for posting to me, you are very kind. I am having some problems still with hospice but am trying to straighten them out. I will keep everyone posted on how things are going, right now they are still the same, Ed is not eating nor drinking much, the nurse came yesterday and said he was totally dehydrated which is not surprise, he has been dehydrated for almost a year. I do not know why he will not drink, maybe he is giving up. It is very distubing for Diana and I to watch him decline everyday, I pray that he will find some peace within himself because only God knows, we cannot do that for him. He is a young man with a horrible cancer and he is still very very angry about it, he is as angry as the day he was first diagnosed. I feel so bad for him but on the other hand, I am trying to stay out of his room as much as possible so the fighting will stop.

    Linda
  • Tina Blondek
    Tina Blondek Member Posts: 1,500 Member
    #11
    lindadanis said:

    therapy, etc.
    Yes I am seeing a therapist as is my daughter. We have been seeing her since Ed's diagnosis last October. I do understand that he is feeling out of control, that he has lost control of almost everything in his life, however, this does not give him the right to treat his family like crap. I am dealing with a man who also has a brain met and I believe this may be causing some of his problems in the past few months but certainly not the past year.
    I love my husband dearly, we just renewed our wedding vows, we have been married 25 years and the man that I am living with today is not the man I married. thank you rob for posting to me, you are very kind. I am having some problems still with hospice but am trying to straighten them out. I will keep everyone posted on how things are going, right now they are still the same, Ed is not eating nor drinking much, the nurse came yesterday and said he was totally dehydrated which is not surprise, he has been dehydrated for almost a year. I do not know why he will not drink, maybe he is giving up. It is very distubing for Diana and I to watch him decline everyday, I pray that he will find some peace within himself because only God knows, we cannot do that for him. He is a young man with a horrible cancer and he is still very very angry about it, he is as angry as the day he was first diagnosed. I feel so bad for him but on the other hand, I am trying to stay out of his room as much as possible so the fighting will stop.

    Linda

    Hello Linda
    Yet another
    Hello Linda
    Yet another horrible day in the lives of Linda and Dianna. I was so glad to read that you and your daughter are seeing a therapist. I am sure this is helpful. I do not know what to say about Ed. I know my dad was getting pretty nasty towards his end of life. Not for the whole 16 mos he had cancer though. Dad would lash out and yell at whoever was there. Mostly this would be my mom. Ed is angry, nasty, and yes very much out of control. I am sure we would be somewhat like him if we were in his shoes. Ed is a unique individual. I suggest you keep yourself out of his room as much as possible. Give him a hand held mirror, he can look at himself and yell at who he sees! You and Diana are doing the best you can. Ed could not ask for more, even though we know he does. Keep up with the hospice and trying to make it better. Rob is right, people like the ones you are dealing with should not be working at a hospice job.
    Love and hugs to all of you! Peace.
    Tina
  • oriontj
    oriontj Member Posts: 375
    #12
    I'm so sorry for your problems
    I've been reading this past year about what you are going through...I pray for you daily.
    We opted not to do home hospice for my Mom...at that point she was unresponsive..she went to our area Hospice and they took excellent care of her. Is that an option for you? I know it cost $150 a day just for the room...Medicare paid for everything else. I wish you could do that just for the peace of mind and breathing space.

    When I think of what you have gone through, I truly don't know if I could do as well as you have done...every day for so long.

    You are truly an angel.

    orion

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