The War Between the North and the South

jan

The War Between the North and the South

jan
My little mother looks like a Civil War refugee. All four of her limbs are bandaged. I can almost hear the Fife and Drum Corp warbling in the background. But she is definitely one small game token in a much larger engagement.

I had been caring for her at home with the help of Hospice since May. The Hospice Team had a conservative approach and never missed an opportunity to remind me that my mother was too high functioning to remain in their care after the 90 day review. It required some heavy-handed phone calling once in a while to get someone to visit. I had to remind myself, yes, there are other people who are actually dying, but Hospice gets paid the same daily benefit whether you're dying or not, so she deserves some attention. Overall I was very thankful for their attention, I learned so much from each Team member; they were caring and very kind to my mom, and I thought we were just chugging merrily along.

Then my mom lost her balance/tripped/fell/did floor exercise in our house (the truth remains out there), hit her face on the concrete floor, and we placed her in a temporary facility, which happened to be in another county. which meant another Hospice Team.

The assessment by the new Hospice Nurse took two hours. The first thing she said was, "You mother is starving". She proceeded to say that my mom uses too much energy chewing and going to the bathroom so she ordered pureed food and a reduction of laxatives. She ordered a wheelchair because my mom is too weak to walk and "she had been falling all the time."  She ordered Ensure to boost her nutrition and wanted her to be spoon-fed, not feed herself. She stripped off all the expensive high-tech foam bandages just placed by the previous Hospice Team, and re-bandaged her with copious rolls of gauze and elastic tape. She finished her evaluation by stating that my mother needed to stay in the facility, that moving an Alzheimer patient is very disruptive, and that she understood it was my intention to bring my mom home in September when I return to Florida, and it was not a good idea. I ventured to ask about my mother's 90 day Hospice review, and did she think my mother would be graduated out of the program? Her eyes got wide and her look said, "You MUST be joking. Not only are you misinformed, you are also inept."

Another opportunity to be caught off guard, surprised, and unsettled. One Hospice Team practically humors me and the next one almost ridicules me. At the end of the day it's not about me, anyway. Still, I felt betrayed. I could have fed her! I own a blender! I can push her around in a wheelchair as good as the next person, but no one ever said we needed to do that. And I can't seem to get anyone to believe that she is like The Three Faces of Eve, weak and cripply in the morning and a Speed Demon at night. It feels like we are treating symptoms and not a whole person.

The Hospice Team gives the orders and the facility attempts to fulfill them. So far they have worked together for my mother's good fairly well. Still, I am sad to see her there. I'm not ready to give her up to long empty hallways, sitting in the common room singing karaoke to "Twist Again Like We Did Last Summer". This week when I went to see her, her earrings were missing, she had a red mark on her lip, a new unbandaged 2-in. open gash on her arm, a cough, her teeth hadn't been brushed recently, and her hair....well, she had that white brushed-back fuzz-mat that all old ladies get. On the other hand, she smelled okay and her hands were clean, her room and laundry appeared clean and maintained, for which I was very thankful.

I can't do one single thing about her being in there right now, other than visiting her and filling in the gaps where her personal care is inadequate. I can't bring her home right now. Yesterday we found out the evaluation Hospice Nurse has now become her full-time Hospice Nurse, so it looks like a long-term ride on the Roller Coaster of Alarmism. If I do bring Mom home in September, it will be after much thought and preparation for her safety and well-being. AND BACK TO THE PREVIOUS HOSPICE TEAM, back in our home county. I'm trying not to think about it.

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LilMagill

Oh, Jan. How dare that lady give you that look! I keep remembering a line - or message - from the book The Caregivers, how family caregivers now have all the responsibility but none of the authority. I was just having a conversation with my husband last night about how the SAME DOCTOR will so often completely contradict him/herself from one visit to the next.

Jean

Oh Jan, I'd like to punch that nurse in the face. I'm becoming a bit verbally, (or fantasy) aggressive these days. We had a simalar situation with my MIL. The intake Hospice nurse criticized us for telling her we didn't know what to do and we were thinking of calling 911 to take her to hospital cause we didn't know how else to get her there. She let us know that her condition was NO EMERGENCY... and that there were other options to transport her... we had no clue then.\r\n\r\nWe were also told that we should take my MIL out of the dementia unit. That she would be better off there. We disagreed and brought her home because she had improved so much, and didn't have AD (vascular dementia) and was now asking for her Times and Newsweek. The other patients were lower functioning. Mind you she belonged when we first put her there cause she was delusional, violent and elopement prone. \r\n\r\nBut I think you are the best judge of where your mom should be whether it be with you or there. I learned (and it took a long time to learn this) that we really knew what was going on with her more more than others who may have had other motivations other than her best care.\r\n\r\nI'm sorry you are going through this now. And I hope that you can enjoy your time in Ohio. Hugs.

Denise

I was thinking the same thing about the health care system <a href='http://www.caregiving.com/members/hussy/' rel=\"nofollow\">@hussy</a>!! \r\n\r\nMy theory on the differences in hospice organizations is the management's perspective on reimbursement. The Medicare guidelines can feel like judgment calls on which patients qualify for services (and therefore are reimbursable). Some organizations will be more aggressive believing they will be reimbursed from Medicare. Some will be more cautious worrying that they won't be reimbursed. It kinda sucks to be the family in the middle.\r\n\r\nIt's so upsetting to feel you could have done x, y or z had you known. How would we know? I just wish it were easier to be in the know.\r\n\r\nI'm so grateful you keep us posted and you share this kind of experience. You shed such a light on the system of health care. It helps us all.\r\n\r\nThinking of you and your mom. :)

Hussy

I have a big amendment for my post :)\r\n\r\nI wrote:\r\n\r\nMy feeling has been — and still is — that many if not most of these vomiting episodes are, in fact, panic attacks brought on MY stress.\r\n\r\nI meant:\r\n\r\nMy feeling has been — and still is — that many if not most of these vomiting episodes are, in fact, panic attacks brought on HIS stress.\r\n\r\nUm...calling Dr. Freud! :)

Hussy

Jan, I feel for you. It's mind boggling how one health care professional can steer you in one direction, only to have another head you off at the pass, saying \"You're going completely in the wrong direction.\" A few weeks ago I took my husband to our treatment center's satellite (read: closer) ER because he was vomiting. They \"fixed him up\" and sent him on his way. We didn't even get home before he started vomiting again. I called the treatment center, the nurse accessed his records from the satellite ER and she proceeded to tell me that \"They didn't give him enough Zofran (anti-nausea med). We always give him twice that dose.\" So, I hear you on saying that you WOULD have fed your mom, you WOULD have pushed her in the wheelchair, had you only known. I WOULD have asked the satellite ER to give my husband more Zofran if I had known! \r\n\r\nMy feeling has been -- and still is -- that many if not most of these vomiting episodes are, in fact, panic attacks brought on my stress. And my husband's treatment team has more or less concurred. But on our last visit to the ER -- the local one this time -- which culminated in admittance, I was sternly told by the attending that \"this is not stress. Something is seriously wrong. We're transferring him by ambulance to his treatment center.\" Of course I feel guilty that I didn't take him to his treatment center in the first place. But guess what? His treatment center discharges him the following day, telling me \"This is all stress-related.\" Tell me about it! Are they talking about him or me?! \r\n\r\nI admire you for your evenhanded assessment of your mom's current situation. Your ability to recognize that while perhaps not ideal, things certainly could be far worse. Your recognition and acceptance that while you cannot change the ways things are right now, you can plan differently for the future. Your mother raised a pretty amazing daughter.