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Topic: dad

Forum: Palliative Therapy/Hospice Care — A unique forum ONLY for those trying to live well and/or trying to die well.

Posted on: Dec 1, 2012 05:00AM

dmacw wrote:

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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Dec 1, 2012 09:15AM - edited Dec 1, 2012 07:24PM by Skittle

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Dec 1, 2012 04:00PM LuvRVing wrote:

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.

Michelle - read my blog at www.mch-breastcancer.blogspot.com - Be kind to one another! Dx 6/15/2010, IDC, 1cm, Stage I, Grade 3, 0/4 nodes, ER-/PR-, HER2- Dx 3/29/2011, IDC, 4cm, Stage IIIB, Grade 3, 4/21 nodes, ER-/PR-, HER2- Dx 5/11/2012, IDC, Stage IV, Grade 3, mets, ER-/PR-, HER2-
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Dec 1, 2012 07:20PM LuAnnH wrote:

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.

LuAnn -- Dx 7/2/2006, IDC, 2cm, Stage IV, mets, ER+/PR+, HER2+
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Dec 6, 2012 07:24AM dmacw wrote:

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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Dec 11, 2012 06:53PM - edited Dec 11, 2012 06:58PM by lisagwa

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Dx 2/2012, DCIS, 1cm, Stage 0, Grade 3, 0/2 nodes, ER-/PR-, HER2- Surgery 3/23/2012 Mastectomy: Left; Prophylactic mastectomy: Right Surgery 6/19/2012 Reconstruction (left); Reconstruction (right)
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Dec 17, 2013 09:30AM dmacw wrote:

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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Dec 17, 2013 10:44AM marywh wrote:

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.

Dx 1/2008, IDC, 2cm, Stage IV, Grade 3, 2/3 nodes, ER-/PR-, HER2- Surgery 6/15/2008 Lumpectomy: Left; Lymph node removal: Left, Sentinel Radiation Therapy 9/1/2008 Breast Surgery 8/5/2011 Mastectomy: Left Chemotherapy 8/25/2012 Abraxane (albumin-bound or nab-paclitaxel), Carboplatin (Paraplatin) Chemotherapy AC Chemotherapy Doxil (doxorubicin), Xeloda (capecitabine)

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