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dmacw
dmacw Member Posts: 886
edited June 2014 in Palliative Therapy/Hospice Care
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  • dmacw
    dmacw Member Posts: 886
    edited December 2012

    My dad has bladder cancer, stage 4 with multiple tumors. We have hospice in the house. They are all wonderful people but a bit usless in caregiving. Yes call us anytime but we have to do all the work. They are doctors and nurses that come and see him. Not volunteers so I guess I expect more from them. They come to the house, talk to dad, hold his hand, leave a bunch of meds (mostly mind altering) and leave with instructions for us. I never since I was a little girl wanted to be a doctor or nurse but am forced into it. I never had childen as I knew I wasn't able to tend to their physical or bodily needs. I never even had a pet as that was also expected. Please don't think I am a cruel and viciuos person.



    Dad does not sleep through the night. I can not sleep on command. Im up with dad most of the night. Then the rest of the family goes to work at 6 am and get home at 6 pm. Im beside myself. We cannot afford private nursing. Im at my wits end. Now he won't go to bed. He lays on the couch. I sit at the kitchen counter, reading and crying, despirate for him to just sleep.



    So thank u for letting me blow off steam. I just needed to talk to someone. Again hospice are very nice people but I cant see where they are much help.

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  • Skittle
    Skittle Member Posts: 400
    edited December 2012

    I am so very sorry to hear of your struggles.  I have been in your shoes with my mother, and my husband went through it with his father.  Sleep deprivation and tending to physical needs takes a heavier toll than anyone knows until they've been there.  I hated, hated watching her slip mentally away as the drugs to keep her pain managed robbed her of her thinking...  Hospice people here did exactly what you are describing.  Does your dad have any military connection?  The VA has resources to help you.  Do you have any church affiliation?  Sometimes a church family can spell you for an afternoon off and on for YOUR sanity and rest. 

    The one mistake I really regret is I didn't take care of myself.  It was a hell I would wish on no one.  Look into what's called hospice respite care.  There is hospitalization available so you can get back on your feet. 

    I wish I could help.   "Hang in there" is almost insulting to the burden you're bearing, so I can only send virtual hugs your way (((( )))) and will answer any questions I can.

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  • LuvRVing
    LuvRVing Member Posts: 4,516
    edited December 2012

    Would your dad be willing to go to a hospice facility instead of doing home hospice?  My mom passed away last month after being transferred from the hospital to a hospice facility and it was a truly wonderful experience.  Each room had a nice seating area with sofabed, patio with sliders so we could roll the bed outside if we wanted, and common areas that included kitchen, dining, family rooms and a chapel.  They handled ALL the care and we were able to focus on mom and take care of ourselves.  I hope you find a good solution so you can take care of yourself.

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  • LuAnnH
    LuAnnH Member Posts: 8,847
    edited December 2012

    I'm so sorry to hear how hard things are for you now.  Where are you located, maybe someone lives close enough to lend you a hand or at least be close by for you to vent to????  I am shocked that your hospice does not do more than come by, check on your dad and leave meds with instructions.  Most hospice's I have ever seen or heard of do so much more to help the family as well as the patient.  Do you have more than one hospice facility in your city that maybe you could try a different hospice?   I know we have 2 or 3 hospice options where I live so maybe that could help.

    I don't think you are mean or viscious, you just know what it is you are capable of and have lived your life within those boundaries.  This really has to be hard and I wish I could offer more ideas to help.  Vent away if that is what it taked to help your relax a little.

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  • dmacw
    dmacw Member Posts: 886
    edited December 2012

    Thanks for all the info. I have learned to speak up and hospice has backed down. I listen and then say yes or no. Dad is now up and about. We have him on a few meds. But at least he is not on any of the mind altering stuff.

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  • lisagwa
    lisagwa Member Posts: 232
    edited December 2012

    My mom was at home with hospice before she passed away. I had to speak with the manager. I was told that we could change teams if we weren't satisfied.

    My mom's hospice had a social worker and chaplain. I requested that they visit my mom and also speak with me. You can request someone from hospice come to your house and help you with medication management. You might ask the nurse to give your Dad a prescription for sleep or anxiety.



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  • dmacw
    dmacw Member Posts: 886
    edited December 2013


    I ran across this post and figured I would update. Dad passed away on 2/12/13. I lost a husband at age 40, my mom and dad to this disease. This will be the first Christmas without dad. I still have not changed my mind regarding hospice. I think they expect too many medical decisions and treatments to be made by the family. Things they had us doing I believe should have been done by doctors or nurses. And the medications I believe, are too severe. There is no hospice in a facility here in Buffalo unless you are dying within hours or to adjust medications (in some cases only). But enough of that. As you can see I am still very bitter.


    Everyone please have a wonderful Christmas and a Happy New Year.


    Donna

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  • marywh
    marywh Member Posts: 2,280
    edited December 2013

    Im very sorry about your Dad. I lost my dad 7 years ago on Dec. 13 and I still miss him so much. Hope you can find some peace through the season. I know its so hard.

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