How much do I stress thee? Let me count the ways….
One: I moved in with my mother last summer to help out. My sister, who lives with mom, was having major health issues herself and needed help. When mom was healthy I would never have moved home. Mom forgets I am 52 years old and have lived on my own for over 30 of those years. Most days she assumes I do not know how to do anything domestic, so she will tell me how to make oatmeal, or do laundry. If I sneeze or cough I am “educated” in what I need to do so I don’t get sick. I have had this “education” every week now since August.
My mother is terminally ill (emphysema) and has Hospice Home Care. My sis and I have a 24/7 phone# to call if mom needs a doctor or nurse, or we have concerns. An RN visits once or twice a week to check mom’s vital signs and talk with her about pain, depression, whatever is going on with mom.
Two: When a terminally ill patient is put on Home Hospice Care, they remain there until death. Hospice patients do not “get better”. That’s what terminally ill means. Am I right?
Nope.
Last month my mother (the terminally ill patient put on Hospice Care), was served a notice stating that her health care provider was terminating her Hospice coverage because Medicare would no longer pay for it. WHAT???? There had to be some kind of mistake here.
Three: I diligently went through the appeal process on my moms behalf. Several woman hours were (and still are) being spent trying to fix this nightmare. After the first appeal was denied, I was told how to file a second level appeal. So I did this. It also was denied, based on notes taken by the visiting nurses that indicated mom was “stabilized” and did not need any nursing visits. When I read the notes for myself, it was painfully obvious – mom had sugar-coated her condition and was not telling the nurse/doctor the whole truth (a.k.a. she lied) Sigh.
Not one doctor examined my mother just prior to this termination of coverage. No doctor (or any representative) visited her or called the house during the appeal reviews. Obviously nobody takes these appeals seriously enough to actually investigate them. Which explains why you are notified of their final decision within 24 hours.
~~~ By now you must be sorry you wondered about the 12 reasons for my stress. I applaud you for getting this far! ~~~
Four: Now my sis and I are the only nurses mom has. It’s a good thing that mom knows everything there is about medicine and she can tell us what to do. Sorry. Sometimes sarcasm is all a girl has.
Five: So, now what? Well the nurse at mom’s Health Care Providers tells me that if mom needs to be seen by a doctor she must now go to the clinic. I actually laughed out loud. My mother has not been able to leave the house since 2006, unless by an ambulance. Somehow I don’t think Medicare will cover an ambulance ride for a patient, who, by their way of thinking, should have died six months ago.
Six: Speaking of drugs… Mom is on some heavy-duty stuff that is slowing down her brain function. She hollers for me, then does not remember what she wanted when I get there. I must wait, standing by her bed, until she thinks of it again. Most of the time she thinks of something else to tell me, or for me to do. The original thing has floated off into the void.
Seven: I understand the forgetting. But the false memories really blow my mind. For example mom will insist that she always kept her little black notebook in the drawer under the microwave and we must have moved it, lost it, or thrown it away if it is not there now. My sister has lived in this house with mom for over 3 years now and has never seen a little black notebook in any drawer, cupboard, or on a shelf. Ever. I of course believe my sister, who is not ill or taking morphine. Mom will argue belligerently (OK, scream at us) that she knows this is true and why the Hell are we arguing with her? We do a lot of head nodding and “Yes, mom” around here.
Eight: My employer had graciously approved my request to telecommute part-time and use up my sick leave & vacation in order to care for my mom. Now I had to request an extension for another 3 months so I could straighten out mom’s medical care mess. I feel bad about being away for 4.5 months as it is. And all my vacation/sick leave is gone.
Nine: Not only have my co-workers put up with my being missing in action, but they are donating some of their own personal leave to my account. This will keep me getting a full paycheck. Tears well up in my eyes when I think about their generosity.
I want to just curl up somewhere and cry because payroll can’t use these donated hours of leave for me. Not until a renewed Physician Certification of my mother’s condition is submitted.
My mom’s hospice doctor can’t help us. Mom is no longer on his “roster”. Her physician at the clinic has not seen her since 2008, so he does not want to sign any paperwork regarding her condition. I suppose we are lucky he refilled her prescriptions last week.
Ten: I am so homesick! I miss my man. I miss my daughter & granddaughters. I miss my Sleep Number Bed. I have been sleeping on “old lumpy” for 4.5 months. My “room” is the couch. All my clothes, and personal stuff is shoved behind the couch. When my man comes to visit me, he gets old lumpy and I get the love seat across from it.
I miss sex. I miss romance even more.
I miss my little office at work. I hope ants and spiders have not overtaken it. Working from my laptop at the kitchen table is a bit tough – no privacy, distractions up the whazoo. Good thing I usually can work between 6:00am and 10:00am. When mom and sis sleep in.
Eleven: My sister is jumping through DMV hoops to get her driver’s license un-suspended. I have been her chauffeur since I got here. It has been interesting because I don’t like to drive. I also have a severe directional disability. Melanie laughs when I don’t know which direction to turn onto a street that we just came from 15 minutes ago. So fire me. Please!
and last but not least…
Twelve: I only have 1 hour to get this blog posted for my Jan 5th post.
