I need to document this journey, all the details, please indulge me.

My day started with a panic attack and 5:00 am when I realized that for twenty-four hour care in addition to the care offered by Hospice (that can be removed from crisis care at any time leaving my mother unattended on a day’s notice) I will be paying over $8,000 this month and, that is not counting my mother’s close to $3,000 rent. I think the grand plan is that you spend down whatever you worked for over a lifetime so you can go on Medicaid and end up in a nursing home to suffer neglect and humiliation that will surely lead to death.

Then came the calls, a day’s worth.

• A call to the doctor who was my mother’s primary physician. I informed a nurse of my mother’s health status.

• A call to my mother: This is the second day she wanted to talk, sounded a bit better, said she felt better, the terrace door was open and the sun and air were coming in. She sounded overwhelmed by the beauty of the trees (as yesterday), of the lake, the birds. “The birds are singing! They are saying, ‘get well, Pauline!.”

• There were several calls with the home health aide: the aides in my employ are phenomenal: they are dedicated and vested in doing a good job. But there seems to be some kind of dissension between the aides and the main Hospice nurse, who keeps insisting that my mother’s bed is a danger and should be removed from the premises into another (hopefully vacant and bedbug -free apartment–yes there have been incidents of critters in the building beyond the mice that were found). And I found myself agreeing with this woman but my gut was saying NO WAY! She was covering her ass: she could have the hospital bed moved a bit from it’s current position and then people can maneuver around it, she can move the commode to the bathroom until needed, and does my mother really need to have nurses sitting on top of her and watching her every breath? The place is small enough for whoever is on duty to be steps away. They also make my mother stay in bed when she wants to move a bit and sit in her chair and watch television. Another cover your ass measure–she doesn’t want her supervisor seeing that my mother isn’t in bed. Now I ask: isn’t it good for a person to move if they feel like it and not get bedsores and feel so claustrophobic? It’s not like she is getting a breathing treatment every hour of the day. Must follow up with Hospice. Sticking to guns.

The Hospice nurse wants to move the bed to another apartment as it is in the way:
why not just move the hospital bed a bit away from it, what is she talking about “dangerous”?

• Aide reported that there is no detergent available for clothes–the facility had been doing my mother’s clothes and now isn’t, what gives? Must follow up with management.

• In the middle of all this I was having my hair done in my home and talking to the Hospice nurse in question and listening to her bed issues and cover-ass propaganda.

• A call to Medicare to find out if I can get them to pay for the home health aides as my mother is no longer independent: must follow up:

• I need a primary doctor’s request and I am not even sure who that is: I left a message, no call back: must follow up

• A call to her long term care provider to initiate the claim for reimbursement: I will be called back for an interview. Here my mother has been paying into this insurance umpteen years and you know what kind of reimbursement she will get? Sixty dollars a day. Follow up/interview

• A call with the head of the agency: her agency is NOT Medicare approved. This will be an issue.  We will have to work something out to maintain her people whom I don’t want to lose. It was reported to her that the Hospice nurse in charge (see above) reeks of cigarette smoke. I am supposed to follow up but at this point I am daft.

• Two calls with a woman recommended to me who works with a lawyer who can advise me on assets, entitlements, Medicaid deferred action. Hopefully something can be done so that if she goes on medicaid she can stay in her home and have home health services rather than go into a nursing home and deal with the indignity and neglect. I have a fifteen minute phone appointment with the lawyer as a  follow up tomorrow.

• A phone call with my brother-in-law who volunteered to do some research on Veteran’s Survivor Benefits, but this will need a follow-up another time, there are too many other things that likely have to happen first.

• Several calls with my sister

• A total non-sequitor call to apple about a phone glitch now fixed

• A call from the animal trapper whose friend has an opening for low cost spay/neuter for my outside kitties. I told him now I am on overload, and my own cat has been diagnosed with diabetes and needs follow up and I haven’t had the time because of all this other stuff. I need to follow up, couldn’t concentrate, I was making dinner, it was after 7:00 pm and I could no longer think.

All I want is to be able to sleep, to not have to worry about my mother’s money, to not think about nursing homes, to banish the thought of my mother her possibly losing her apartment, to not be concerned about being able to pay the bills, to not fear that my mother won’t continue having appropriate care.

I want to stop having ocular migraines.

If anyone from the healthcare industry or government agency is reading this, read well. Take the message to the right place. The baby boomers are moving on up and will be in such positions in the future. Hopefully the young people now being raised will be compassionate, knowledgeable, and God help us, literate.

After experiencing all of this, observing and internalizing what goes on, and how much change is needed, I am shuddering at the thought of my future. Maybe my karma is to be an advocate for the elderly and indigent.

Maybe the birds have a message for me.

This series is linked: see “continued here.” Also, below the line there will be links for the previous post and the next.

The series starts here

continued here