The light at the end of the tunnel is not an illusion.
The tunnel is.

Where was I?

It is now the middle of the sixth week of my ongoing challenges—to advocate on behalf of my mother; I continue to spin. Just when I think I can take some time off, the phone rings. It’s complicated. We are at a turning point. Actually, we are at several turning points.

The boxes continue to pile with folders, the folders continue to expand.

1. I am still up against my mother’s doctor’s office. I have sent fax after fax, made call after call. If someone answers the phone I am yessed to death, if the phone is not answered, I leave message after message, if I send a fax, it, like the phone messages are not responded to. NO call is ever returned.

2. The case manager at the Managed Health Care Agency got so frustrated and disgusted along with me that she initiated the Ensure supplement without the physician’s supporting evidence; then, the Ensure was denied by her company. She, too was unable to get the info she needed from the doctor’s office. The case manager and I speak almost daily. We decided we should meet for drinks. Well, we need to make a joke about something. I gave up on the Ensure and continue to pay out-of-pocket.

3. Mixed bag: The hearing for the appeal on extending hours of care is scheduled for this Friday afternoon. For two weeks I have been helping the ombudsman prepare the case. Unfortunately, no matter how many times I have attempted to directly contact my mother’s doctor, I have had NO luck in getting my mother’s latest physical evaluation report.

4. Good news. The Case Manager reports that the company has turned around on the Ensure decision despite the fact that the medical documentation is lacking. They are using a previous report and will still attempt to contact the doctor.

5. The supplier of the Ensure called to say they do need the doctor’s documentation, and that they can only supply for a month.

6. Then, she called back and said she had gotten a go-ahead to renew for five months and will begin delivery tomorrow. They are sending ninety cans, they have upped from sixty. Surprise! (This after I ordered a case from Target, and my mother ordered a dozen from the pharmacy.)

7. I communicated with the lovely lady in the billing department of the agency that supplies my mother’s aides about the status of the final bills to John Hancock, Long Term Care. At some point in our interactions she got me confused with another client who is also having issues with John Hancock. Subsequently got that straightened out. Seems like I am not the only person who is spinning.

8. I had to call my mother to alert her to some shipments that were arriving—vitamins, household goods …

I often dread calling my mother: I don’t know what to expect. You see, I seem to have two mothers: one is grounded and upbeat and the other sounds like an actress in a horror movie. I have noticed a subtle increase in her level of paranoia. Or maybe I should say panic attacks, or anxiety attacks. Or maybe it IS paranoia. Her imagination begins to run wild. She blames things on the aides, doesn’t trust them. If I question anything she screams at me, says I don’t believe her, says she isn’t crazy, that she sees everything, knows everything and that she is afraid. To wit:

She believes that one of her aides stole her medication and vitamins. Then they re-appeared in other bottles on top of the refrigerator;
She says the aide took her evening gown from the garment bag in the closet and when she accused her of it, it suddenly re-appeared; she found a hammer in her desk drawer; she called the handy-man to come up to see if it was his.

[“No, and that is a big ten pound hammer,” he told her.]

She’s been calling the building social worker and relating all this.

I had gone through her closet and I believe the dress she is talking about was there when I looked a few weeks ago.  I am pretty sure that hammer has been in the drawer as long as she is living there, in fact, I might have brought it over when I was setting up her apartment. The social worker told me that the dining-room manager got a call from my mother complaining that her meds were being stolen by the aide. Hardly an appropriate call.

I sent an email to the building social worker earlier. I asked for help, for counseling for my mother:

“…I know she needs to vent and it will help her stay calm. She has intermittent issues with the aides that reflect fear and paranoia. If I say anything she screams at me and says I don’t believe her. Being able to talk to someone would be of great help, to reassure her that no one is taking her clothes and bringing them back, taking her vitamins and re-arranging them, etc. If someone were there to just review what is in her closet and drawers and assure her everything is OK (while validating her concerns) this would be excellent. And don’t forget, now that her vision is compromised by macular degeneration, this may play a part.

My opinion is the behavior is more a self-distraction; a fear of end-of-life terror. “I want you to know what is in my drawer and take an interest! These old watches are important!! You must look, a watch-maker can use the parts … I might die!!” She is now ninety-nine and I suppose old age is a blessing and a curse; the longer the life the more apprehension for the on-coming end. “

These moments with my mother that ebb and flow, that come like the tides, that fill me with dread and then, when they pass, and so far they seem to, still, cumulatively, are drowning me. My anger is my self-distraction from her end-of-life terrors. Listening to her screaming, I become her child and at that moment I am helpless. There is no parent to hang on to. In fact, I have been an orphan for years and it pains me.

Then, I realize why she is screaming: The tunnel is pressing in, it is real.
And, the light at the end of the tunnel is getting brighter.

This series starts here:
Part 1: And The Band Played On … a mother’s life, a daughter’s journey

The previous post is here.

The next post is  here.