I need to leave at three o'clock

I will not even try to re tell the events of the last 3 days in chronological order.  Suffice it to say that on Monday afternoon I could not help my mom out of bed.She did not have the strength or focus of attention that she had earlier in the day.  I don't know what,if anything happened.  It could be something physical or something to do with dementia.  I can often talk her out of these "spells".  It didn't work Monday.  I called an agency & they were able to send someone who had been to our house before.  She couldn't come for about two hours, so I sat in my mom's room talking to & trying to reassure my mom.  She was, as she would put it, in a "tizzy".  She wanted to go to the bathroom.  She was thirsty.  I tried getting her to drink a little from a straw, but since she was laying down, it only led to choking. By the time, we got her out of bed when the home health aide arrived, she had been in bed 5 hours.  Her back simply can't take that.  We got her to the bathroom, cleaned up & in her "sleeping" chair. (recliner).  Then I gave her dinner.  It was 9 pm.

So I've hired a bunch of extra help.  I keep hoping things will get back to "normal".  This is going to cost a fortune.  I was hoping that any major expense could be put off until August, but I'll just have to be frugal in other ways.

Yesterday a coordinator of one of the programs that is helping us called to see how things were going.  I gave her the update.  In the course of the conversation something came up that prompted her to warn me not to make friends with the home health aides.  I laughed & said she was the hundredth person to tell me that.  However,....... three hours later I was exchanging intimate details of our lives with the newest aide.  I like her, I really like her.  I will never learn.

Then there is the "respite" aide.  She is supposed to be here Tuesday & Thursday from 1:00 to 5:00.  It took over 2 months to find someone who would come to my side of town.  She began with us on May 26.  Today was the fourth time she has asked to leave early.  What part of "respite" does she not understand? She's not just coming here so I can take a nap.  I have appointments.  I have places to go & hopefully people to see. (Then I wouldn't need to make friends with the aides, I could see some actual friends.) If I do choose to use the time she is here to take a nap, that's ok too.  Trouble is my mom is needing assist of two people for all transfers since Monday.  Right now I'm praying she doesn't say she needs to get up for anything for another 25 minutes when the respite aide arrives.

Oh don't let me forget the nurse from hell who rode in here on Tuesday.  She was an RN from the doctor's office.  I didn't understand why she was coming.  We have home health.  I was talking to the home health nurse when this other nurse range the doorbell.  Since the home health nurse didn't understand why the other nurse was there I handed the new nurse the phone & let the two of them talk.  It sounded like dueling nurses having a turf war.  After she hung up the phone she began giving orders & asking no questions.  She seemed totally confused about my mom's case.  She thought the person she talked to on the phone was the physical therapist.  She gave a bunch of orders on how to care for my mom's skin that contradicted every other piece of advice I'd ever been given.  Nurses often have their favorite product or technique, but it all boils down to keep it moist & keep the pressure off.  This woman said to use soap & water which anybody knows is drying.  She was wrong about what Medicare would pay for.  She said my mom's wounds were not bad enough for home health.  Bulls**t! They have been paying for it on and off for 5 years. This woman had painted on eye brows arched half way to her hair line.  She was leathery from the sun & she was sweating.  It would be putting it mildly to say I took instant dislike to her.  I called a contact I have at the doctors office & voiced my displeasure.  It wasn't just me who was upset, it was my mom.  She said not to ever let her in the house again.  Today the administrator from the medical practice called me to apologize.  She was very eloquent & sounded sincere.  She said the nurse in question was being "called into the office" on Monday.  I didn't want this to turn into a big ruckus because I don't want my reputation to be one of "unreasonable expectations".  I don't want my mom termed by another doctor because of me, but the woman had my mom on the bed half naked to look at a few wounds on her derriere.  My mom is modest.  I covered her with the blanket & said we could uncover what we needed to.   I think of myself as pretty meek & mild.  I only speak up some times.  I don't see myself as difficult to work with.  Maybe I am though, maybe I am....

The cherry on the sundae? Early this morning my mom said she didn't know who she was or where she was.  She asked what my name was. My heart sank further than I thought it was capable of sinking.  Fortunately, after breakfast she knew who she was & who I was.

Reborn from an MRI tube.

This morning I had to have yet another MRI. This one was to get a better look at a lump on my back which most likely has nothing to do with my cancer. I consider the cancer eradicated from my body. This lump was diagnosed with one of the most painful procedures I've ever had. The Pathologist sticks a needle right into it to withdraw fluid. This is a lump that is on,in, around or some where  near a NERVE. He told me that it is most likely benign and he could tell me more after  it is removed. He said he could tell me more then & there but he would have to stick the needle in 6 more times & neither of us was for that option. I had already nearly broken the fingers of the nurse who volunteered  to hold my hand. It was hard to withstand that pain AND not move. He looked at the fluid right away & came back to give me the diagnosis  of Shwarnomma. Isn't that a middle eastern food eaten in a pita pocket? He had to write it down for me. BTW, the reason they couldn't anesthetize the area is that  administering the anesthesia would hurt as much as withdrawing  the fluid.
The MRI today was the next step. Thursday I see a doctor to go over the MRI,  & then I'm guessing I go see a surgeon. If this thing only hurt when someone touches it, I'd say leave it alone, but it's begun to hurt all on its own, so sometimes  it burns, other times it feels like I'm being stabbed. They've given me  special medicine for nerve pain, but it leaves me unimpressed.
This is all a preface to this mornngs MRI. I'm not going to retell the waiting around beforehand  part. I'm going to quote from my journal that I was furiously writing in to try to stave off my anxiety, because I hate MRI's.

"I swear this is the first time I have taken  oxycodone  for anything other than pain. (I also took xanax.) I just need all the help I can get to get through this. Heart still racing. When will I calm down? Thinking & writing about it probably wrong thing to do- making it worse. Need to meditate- if I knew how- ready to jump out of my skin -not just claustrophobia-scared  that  this  is cancer or that I need another operation or that I'll be a paraplegic - nearly a quadraplegic. Nuts, now I'm  crying. It wouldn't be a medical appointment without crying. At least I don't get hysterical or sob anymore.
Stop
Take a breath
Options/choose
Proceed to  act


Options-can try hard to calm down, can just grin & bear it, can flee,can hope that med start working soon, can sit here & just worry  myself sick...

Proceed to act-breathing, I may have to stop writing. I think it's making it worse. Remember, with only 1 exception that I can remember these people are NICE. That 1 person ...wasn't bad,just said I had cancer before I was sure I had it, remember crying then. Plus I hate to get Iv's"

At this point they came to get me, changing into gowns,getting IV (she got it on the first try!) & finally going in to MRI room. I was situated on table & given instructions. I told them I wanted Diana Krall or Norah  Jones to listen to, then they slid the table back  & started the concrete mixer.  ( that's  what  the  MRI sounds like to me if you  throw in a jackhammer & a foghorn). I kept my eyes closed cause I didn't want to be reminded I was in a confined space. I think this is when the meds started working. The tech kept telling me what would happen next & telling me I was doing a good job. At what I had no idea. Then they stopped, rolled me out of the tube & injected the dye for the next part of the test. I asked them to change the musc to reggae. They rolled me back in the tube &this is when the meds really started working or I had a spiritual experience. I don't know. I started thinking about my maternal grandparents &  how nurturing they were to me. I felt them both hugging me. I kept still, but started to cry again. Then the test was over & they rolled me out of  the tube. Tech gave me kleenex to blow my nose. I asked her why she kept telling me I was doing  a  good  job.  She said it was because I held still. I didn't know that was such a great accomplishment.

I ended up being "under the  influence" for several hours. Next time I'll  stick to xanax. I told this story to someone who said it sounded like I was being reborn coming out of that tube. Hmm...