Best Laid plans

We were gong to a wedding reception in San Francisco.  I had been looking forward to it for weeks.  We stopped by Atria on the way out of town to drop off a new telephone.  Her telephone has stopped working.  From the minute we walked in the door, I knew, with a sinking heart, that I would not be going to the party.  She was in great pain.

She was practically in tears.  She also wasn't dressed and I got her to put on her slacks, since Walt was walking around.  She was so incredibly pathetic, I would have lived with great guilt if I left her there and went off to party, so I sent Walt to the party (so he could deliver my card) and I told him that he could pick me up on the way home.

(I figured I could at least watch the Emmys live, but then discovered her TV is not working.  I have put in a work order to fix it, but that won't be until next week.)

I gave her a couple of Aleve, but I know that doesn't do anything for her pain, and I fixed a cold compress, but she didn't want to wear it because it was ... well... cold.  Her doctor had sent me a message on Friday.  She was  going to try Norco for her but her note said "sorry read message late was very busy to see patient, so can not send Norco prescription "  I don't know if this means she has decided not to give her a pain medication or if she means that she was too busy to help with her pain on Friday and she would have to wait until Monday.  (English is not her first language and she doesn't communicate well at ALL in writing.)  I sat down and wrote to my gynecologist to ask for suggestions of someone who is a good gerontologist that I could switch my mother to.  She's going to refer me to someone who can help me make that decision.

She took a nap for an hour or so and I read but then she was awake again and pacing and trying to find a way to help her pain.  

The afternoon was horrible.  She fainted once, and was extremely restless, moving from chair to couch, sitting on one butt cheek, then another, crying out in pain and wailing "What can I do?  It hurts so much!"  I asked her again about the cold compress and she got that "I'm not interested" look and told me to "leave it in the refrigerator and if she thought she would need it, she'd get it."  She also has a new trick...when you suggest she do something to help herself, she tells you how pretty you look, or how nice your shoes are...anything to shift the topic of conversation.

Her Atria helper came to take her to dinner but she could barely walk across the room, so we decided on a carry-in dinner.  I never got anything, but I did find out that the fainting episode that sent her to the ER happened in the dining room.  She has her EEG on Thursday.

When the pain was at its worst I asked her again to try the cold compress.  She reluctantly agreed and I handed it to her and told her to put it where it hurts.  "Where?" she asked.  "On your BODY," I replied.  This is what she did.

I told her it was supposed to go on her hip, where the pain was.  She put it there but got up every minute or so to walk around and told me she couldn't use it because it was cold and uncomfortable.

She had moved to the couch and I was telling her she was going to the doctor on Thursday for her EEG.  "Why?" she asked.  I said "To see if they can figure out why you are passing out," and I also said she would have lab tests and an x-ray to see if they could find anything that would help them treat her pain.

"Pain?" she asked.  "What pain?"  I said "aren't you in pain right now?" and she looked at me like I was stupid an said no, testing her arms, reaching over to feel her legs.  No pain.  Five minutes later she was writhing in pain again  This is why it is almost impossible to get a doctor to listen to me!  The girl who was going to take her to dinner asked how she was and she straightened up, smiled broadly and aid "Oh, I'm just fine!"

By this time it was 7:30 and I expected Walt to arrive sometime after 8.  I had answered every usual question at least 20 times, with one new one added.  I had given her a pair of slacks she didn't recognize and had to tell her over an over again that she bought them at Hodge Podge several years ago and I had found them in her closet.  She said she'd never seen them before (I fully expect them to be thrown out when she takes them off)

She noticed the new phone several times and is NOT happy with it.  It will have to be moved, she says, because the telephone doesn't go there, there has never been a phone there (though we removed a phone from that very spot when we put the new one in)

Anyway, she was starting to get sleepy and if I stayed another hour, I was going to go stark raving mad, so I kissed her, told her to go to bed and left.

Half an hour after I got to the lobby I got a call from Walt saying he was stuck in traffic and it would be another hour before he got to Davis.

Thank goodness for my Kindle.

Update

As a P.S. to yesterday, I spent the morning talking to the Long Term Insurance company, her doctor to try to get some relief for her pain, shopping for a cold wrap to put on her back, someone at Atria about the upcoming assessment for assisted living, and finally going to Atria.

I found her in the lobby listening to music, a smile on her face, no memory of 3 days of pain or of her trip to the emergency room, and confused about why I had been concerned.

Grrrrrrrrrr!!!!!

Today at Atria

Well, today may have been one of the most depressing days I've spent in a very long time.  I contacted Susan last night from the ER and told her I couldn't work today.  She understood.  I went to Atria to spend a few hours just to observe my mother and see how she was after the emergency room trip last night (of which she has no memory).

I knew it was not going to be a fun day when I walked in and asked how she was. She had her head down and said "not good."  I asked what hurt and she said her headache, her stomach was upset and her right leg was hurting a lot. She asked if there wasn't something I could do.

Sadly, and bad me, this led to about a half an hour discussion about how I had taken her to the doctor (which she does not remember) and she told the doctor she had no pain.  I told her that the doctor can't help her if she doesn't let her know what hurts.  She got defensive and decided that she just would never say anything about her pain again, since she doesn't know what to do and how to do it.  She could not get comfortable in any position.

I actually took a video of her describing her pain so that if she tells a doctor she is not in pain, I can show what she was talking about.

An Atria worker came in to check on her and my mother perked up and didn't mention her pain, then sank back down into her pain again after the worker left.

I had gotten there at 11 so at 12, I asked if she felt like going to lunch, which she agreed to do.  As luck would have it, they were celebrating September birthdays and she agreed to sit at the birthday table, though didn't talk to anyone  I did not have my camera with me.  One of the guys at the table will celebrate his 100th birthday next week.  I'm wondering if maybe she was miffed because someone is older than she is and she seems to want to think nobody can possibly be as old as she is.

But lunch was uncharacteristically good and they brought out a HUGE birthday cake and all the staff sang to the birthday people.  My mother never cracked a smile.

I was going to pass on the cake in preference for peach pie, the alternate choice, but, as an old cake decorator, I was curious about both the cake and the mountain of frosting on it.  I decided to have a piece, fully expecting to find the frosting cloyingly sweet, but instead it was stabilized whipped cream and absolutely delicious.  So I ate the whole thing, which I regretted about 4-5 hours later when I had the sensation of being uncomfortably full!

We went back to the apartment (she is never sure how to get there).  She tried to get comfortable for awhile and I finally suggested she take a nap, which she did...so I did too.

(isn't it amazing that I can take selfies in my sleep?)

She slept for about an hour and woke when Jeri called.  Jeri is usually a bright spot in her day, but she seemed almost irritated that Jeri kept talking to her.

After we finished the conversation, she was very restless, saying over and over again that she doesn't know where she is supposed to go or what she's supposed to do.  This is not a new thing.  She has said that every single day since she moved to Atria.  She knows she has to do something but she is so afraid of doing it wrong...and can't figure out what it is in the first place.

I reminded her that I had brought her clean laundry and that it was on her bed waiting to be folded, so she got up and did that (to my surprise; usually when I suggest some simple task she can do, she refuses to do it).  But then she came back and it started all over again -- where was she supposed to go and what was she supposed to do?

I tried telling her that the doctor told her she was supposed to rest today, but she wasn't buying that.  She would just sit there, head in her hands, the picture of misery because she can't figure out what she is supposed to be doing -- and the leg pain was just making it worse.

She would get up, walk into the bedroom, turn around and walk back out again and into the kitchen, then back to the couch to ask where she should go and what should she do.  Then she'd repeat the trip again.

I cannot tell you how much it pains me to know that this seems to be her life now.  Agony over not knowing what to do and unwilling to do anything suggested she do, even something as simple as moving the newspapers, which are bothering her because they are "clutter" and putting them in a stack so the housekeeper can throw them out. I cannot tell how many times I have suggested that "something to do" to her, but she never does it.

I finally came home, hating to leave her but there was nothing I could do to help her.  I did come home, though, and wrote to her doctor.  I can't believe there is NOTHING but Tylenol to relieve her pain.  This is what I wrote:

I'm sorry to keep bothering you. I spent 5 hours with my mother today and she is in agony over her leg pain. She says it starts in her right hip and goes down the front of her leg to about mid-calf. This is no attention-seeking, she even cries out in her sleep. Today only one leg was involved, the other seemed OK. But she could not sit or lie comfortably anywhere. She walks very slowly, and with a limp.

She had a bout of sciatica many years ago. I'm wondering if this might be the problem. I'm also wondering if referral to an orthopedist might be in order. I am so frustrated because Tylenol does not help and it is so frustrating to see her in such pain and be able to do NOTHING to help her.

I read up on sciatica and it is described on one page I found (which, of course, I cannot find again) as pain originating in the hip and going down usually just one leg to about mid-calf.  That is EXACTLY the pain she is describing.  I hope Dr. A will give us a referral to an orthopedist because it is clear that she herself has nothing to offer my mother, but that doesn't relieve her pain at all.

I just hate to think that this is her life from now until it is over. 

The E.R.

  Atria called to tell me they were sending my mother to the ER.  They said she had fainted and was "disoriented" and that her blood pressure was "sky high." They sent her to Sutter Davis Hospital (where I volunteer) and I rushed over there.  She was scared and confused but I kept explaining things to her and got her laughing.  

They ran every test in the book including another CT scan, chest x-ray, EKG and tests on every possible body fluid.  All came back normal.  The doctor had no clue what the problem is but suggested maybe getting an EEG to rule out seizure disorder was recommended.

After reviewing everything I know about what happened, I think that Atria people were just seeing one of her "spells" for the first time and to be safe sent her off to the ER.  I am going to talk with them tomorrow.  I am going to have lunch with my mother and then spend a few hours with her just to kind of take stock of how she is and if she faints again.

It's not time to plan her funeral just yet.

But it looks like I'll be taking her back to the doctor again soon.

That's It -- I'm done

Unless she is unconscious or bleeding...profusely... (or both) I am finished taking my mother to the doctor.

Yesterday she was in terrible pain. She always has back pain, but it was shooting down her legs and she could barely walk.  While I was on the phone talking to Kaiser, she staggered to her bed and when I came home, she looked like death warmed over and said she wasn't going to get out of bed.

The nurse and I agreed I'd bring her in to Kaiser at 11:30 today and I fully expected her to be just fine, and me feeling like an overreactive idiot. Again.

But when I arrived she was in the kitchen and when I asked how she felt she said "not good" and it was one of her more vague days where she didn't know where she was or what she was doing. Good. At least she was symptomatic...and I hate to say I was glad that she was feeling bad, but at least the doctor would finally believe me.

I could tell how bad it was because she agreed to let me take her to the car in a wheelchair so she didn't have to walk down that long hall when she was in such pain. She is usually so adamant that she needs NO assistance, whether cane or walker or wheelchair, the fact that she got into the wheelchair without argument spoke volumes.

We drove to Kaiser and on the way there she kind of "came to" and started commenting on the pretty trees again, and when we arrived at Kaiser, she refused a wheelchair and walked to the waiting room.
We waited for awhile, during which time she asked me many times where we were and why we were there.

When we got into the exam room, she turned into Miss Personality again.  Pain?  What pain?  She had no pain.  The doctor manipulated her feet, her legs, her hips.  She poked and prodded and to everything, my mother responded that nothing hurts.

So  OK.  The pain is gone.  That's good, but again I felt like an overprotective mother running my kid to the doctor for every little pain.  That's kind of how the doctor seemed to feel.  We came home with the suggestion that she take Tylenol if she had pain again.

I decided to take her to lunch and we went to IHOP, the closest restaurant to Kaiser.  As she got into car, she winced and grabbed her leg and said it was hurting.  When she got out of the car she hobbled into the retaurant and when she got into the booth, winced and kept rubbing at her thigh saying it was "giving her fits."  When I expressed frustration that not ten minutes before, she had told her doctor that nothing hurts, she said "well, at that minute it didn't hurt."

Throughout the lunch she was constantly wincing and moaning and trying to find a comfortable spot in the booth because her body hurt so much shifting from cheek to cheek and groaning with every move she made.

ARRRGGGGHHHHH!

She was uncomfortable in the car and didn't understand why I was frustrated.

I let her out and told her I'd be back in 3 hours with the guy who was going to see about fixing her chiming clock.  I had forgotten to take her key with us, so I gave her my key so I could leave her at the building, since there was no parking to be had in the whole block near Atria.

When I returned with the clock guy, she was not in her apartment and I had to get someone to let me in.  Darrell fixed the clock and left and I hung around until my mother got back.  She didn't remember where she had been. But she was moving like someone in great pain.  Again.

She hobbled over to her chair, sat down, winced painfully and said her legs were giving her a hard time today.

I couldn't even discuss that because she wouldn't understand.  But I went home and send the following email to her doctor:

I am sending my mother to live with you. We went to lunch after her appointment and she winced and gasped and groaned and rubbed her thigh and told me it was "giving her fits." She is only pain free when she sees you, so I will deliver her to your house at my earliest convenience. She won't be any trouble and she doesn't eat much.

Thank you for your assistance.

Sadly, her doctor seems not to have a sense of humor.  Maybe it's because they don't joke like that in Bangladesh, which is where she's from.  She thinks my mother is feigning pain to get my attention...but I was watching her in pain when she didn't know I was there and she's definitely in pain.

But I'm done.  No more will I rush to take her to the doctor again.


Maybe.

Pain

I went to Atria this afternoon to get laundry and my mother was "not good," she told me.  It wasn't a brain thing this time, but she was in great pain radiating down both of her legs.  She could hardly walk.  I gave her a couple of Aleve, hoping that would help the pain, and I called Kaiser.

It was too late in the afternoon for them to give her an appointment today, but she has one for 11:30 tomorrow.  Of course, if things go the way they usually do, I'll arrive at Atria and she will be just fine with no memory of the pain she is in today and then I'll have the dilemma of whether to keep the appointment, knowing that her doctor can't diagnose a no longer existent pain or cancel it and hope the pain does not return.

The other problem is that her pill container has disappeared.

Last week, I brought the pill container that has her doses for each day in the week.  She still had two days left in her old container, so I left that one for her to finish and left the other one as well.
When I returned two days later, all of the pills were gone out of the new container.

But the thing is I couldn't be sure that I had brought a filled container.  She has two of the same color and maybe I had mistakenly brought the empty one.  (With the signs of my own early dementia, it would not have surprised me). So I didn't stress about it because when she empties a container, she leaves the lids open, and these were all closed and knowing how she hates to take pills, I couldn't imagine her having taken them all in 2 days.

So I brought back a new pill container, which I KNOW was filled, but today, when I went to check on whether she had been taking her meds, the container was gone.  I looked everywhere, even in the freezer. I checked every drawer, cupboard, medicine cabinet, linen closet and her purse.  It doesn't do any good to ask where she put it because she can't remember that she takes pills at all.

So I decided that the time has come to have Atria monitor her meds.  I have a note in to the coordinator to find out how we go about getting that started.

In truth, it will be a relief for me and I won't worry about whether she is taking her pills or not.
By the time I had done all I had to do, and had finished checking all the drawers, my mother had gone back to bed, moving very slowly and painfully.  I told her I was going to go and that I would be back tomorrow to take her to the doctor.  She said she felt like she wasn't going to get out of bed.  I told her that was probably a good thing, then she asked "but what if I have to get up?"  I told her to get up, then.

I stopped at the front desk on my way out and explained what was going on and that we had a doctor's appointment, but asked them to check in with her throughout the rest of the afternoon.

I don't have a clue what I will find when I go tomorrow.  If she is still in pain, I suspect I will have a battle on my hands because I will insist that she let me push her in a wheelchair out to the car.

Every day is a new adventure.  I ache for her and it is so frustrating being able to do so little for her.

I also printed out two photos from her birthday to show her, one of herself and Ned with the birthday bouquet he brought her and one with the two of them and Walt making a toast with wine for the birthday.

The first thing she said was "You know if I met her on the street I wouldn't even recognize her."  When I told her that the woman was HER, she didn't believe it.  Then I said something about Ned and she got this blank look and said "Ned?". I don't know if anything clicked when I reminded her that Ned was her grandson.


 

Jim

I reminded my mother today of the night we called the police at the request of a kid who used to bully our kids all the time.  He said his father was beating his mother.  "Call the cops, please.  Tell them it's Jim.  They know me."

I told the story slowly and, since this was a good day, she seemed to be following it and remembering things, to my amazement.  I was telling her that after that evening, I realized how badly Daddy had wanted a son and how his life might have been different if he had daughters.

When I finished she said "Is he still alive?"  I said "you mean my father?" and she said "No...the guy you're talking about."

owell.