Another Walker Up;date

I got to Atria and found her sitting in the walker out in front of her apartment.  I think she might have locked herself out and since the walker was there in the hall, she sat in it.  I didn't comment on it and just opened the door and we went in.  When we left, she opened the door, saw the  walker and asked if it was mine.  I didn't make a big deal out of it, just said that she had been sitting in it earlier and that it belonged to Atria.  She said nothing.

Walker Update

I sent Melissa at Atria an e-mail to check on how Operation Walker is going.  I was amused to receive this reply:  it has been hit or miss with the walker. We are starting something new though, taking the walker with us to escort her at that time. If we leave it around her or in the room she gets upset and will NOT use it. I will keep you posted over the next few days. Ahhh...that's the Mother I know and love.  I t old her to keep at it, that I won't mention it or it would turn her off further (since I've been trying for 3 years), and when/if she ever routinely uses the walker, I would immediately go out and buy her one.

Operation Walker

I received the most amazing email from the patient coordinator at Atria.

Hi Bev, we all have noticed Mildred would benefit from having a walker. Mildred loved it and had no pain while she was using it as a trial for the escort to dinner yesterday.

Mildred LOVED it????  The coordinator, of course, had no idea that this is something I've been trying to get her to agree to for three years.  With the severity of her back problems, I knew that a walker would help her, but could I get her to even think of one?  No way.

From the first day, she looked down on "all those people using walkers."  (Now, of course, she has forgotten the word "walker" and dismisses them as "things.")

I have tried to trick her into realizing that a walker would help by taking her shopping and, when she complained about her back pain, suggesting she push the shopping cart and kind of transfer her weight to the cart, relieving the pressure on her back.  She agreed that yes, that did help, but when I pointed out that this is the benefit she would get from a walker, she refused to push the cart any more.
I have tried suggesting she use my cane when she was having difficulty walking.  In truth, most of the time I am fie without it, though my balance is getting weird, so it's a safety measure, and I don't know that I could climb stairs any more without a cane or banister. 

She did try the cane and admitted that it helped, but almost immediately gave it back to me like it contained poison and told me that I needed it and I should use it and how lucky I was to have fond something that helped.

So to hear now that "Mildred loved it" made my jaw to slack.

Of course, I suspect there is a lot of people pleasing involved in that.  She looks on the people at Atria as her bosses and, always wanting to do the right thing, if they suggest she use a walker, I can see that she would readily agree, without admitting her true feelings about it.

Another perk of having her on assisted living.

I told Melissa that we would give her a few more days to get used to the idea and if by next week she is still accepting the idea of using a walker to walk, I would go out and shop and get her her very own walker.

I have always thought that if she had a walker with a seat on it, she could actually get out and DO things.  I don't take her anywhere now because she has to stop so often and sit down.  But if she brought her seat with her, things might be different.

Walt was in the Bay Area with the car yesterday, so I didn't go to Atria, but I will go over today and I am going to be very curious to see how our visit goes and whether she will mention the walker.  I won't bring it up, but will let the Atria people deal with it with her.

I decided long ago that she is so damned independent and so proud of her not needing any assistance whatsoever that if she ever had to use a walker or wheelchair, she would just curl up and die.

But maybe I'm wrong.  Maybe this could be the start of a new chapter for her.  I am holding my breath and being cautiously optimistic.

Lunch

I was scheduled to do an intervies in the morning and then would have lunch with my mother As it turned out, the interview was so interesting that I was there for over an hour and I figured it was too late for lunch, so I would just wait in the apartment until she got back.

Well...no.  She was on the couch when I got there and said, as she usually does, that she feels terrible. She feels terrible all over, but can't say specifically what feels terrible (except her leg, which still causes her so much pain she can barely walk).  I'm beginning to think that the "feeling terrible" is more an emotional thing than a physical thing because the more "awake" she gets (from chatting), the more normal she seems.  This is one of the unintended perks of having her on assisted living.  She gets contact at least four times a day from Atria staff and each contact is a social interaction, which she enjoys.

We had a nearly an hour before her appointment, so I got her some coffee and a couple of oatmeal cookies, just to get something into her system before her hair appointment t 1 p.m. The hair salon was moved upstairs and cut in half, size-wise and it is no longer a comfortable place to chat with your neighbors while waiting for your turn.  With all the cut backs and rent raises, f my mother wasn't so settled and happy, I'd look for someplace else, but she likes Atria and it's so close to my house that it's convenient for me too.

Anyway, over an hour of chatting and coffee she eventually seemed not to feel "terrible" any more, but it killed her to stand up and walk, but we did it very slowly, stopping twice for her to rest on the way to the elevator.

A beauty parlor is a good place to get back to "normal" again

And when she was all finished, the change from before was amazing.  

We only had to stop once on the way back to the apartment, but she had to hold on to walls and furniture, and me, to stand up and she collapsed into her chair as soon as we got back to the apartment.  

Once I saw her in her chair, reading the newspaper, I left to go shopping.  We had made it through the week.  She'd been x-rayed, poked and prodded, medicated, and zapped.  She'd had a trip to the ER, a mental health exam and a hair do and we were finished.  I'd met with the folks from Atria a couple of times, her dentist once, and the insurance guy.  I got her outstanding bill paid and now just need to send paper work to her insurance company to get the process started for long term care reimbursement.

Five for Five

Today was the fifth out of five  days when I have had something to do with my mother, whether taking her to appointments, sitting with her because she was too upset to leave, going to meetings about her, or talking with many folks on the phone about her.

There is a perk to all of this:  I haven't seen or heard from Trump in at least three days.

I had a terrible time getting to sleep last night and it was well after 1 a.m. before I fell asleep and my alarm woke me up at 5:30 because I had to take Walt to the airport at 6;30 for his flight to Santa Barbara.  I went from the airport to Atria, where I had to wake my mother up at 8 so we could get on the road by 8:30 for her 10 a.m. EEG.  I was worried about waking her up so early but someone from Atria was there to check on her and she helped me up.

My mother when awakened two or three hours early is actually quite docile, because she's so confused.  This morning he leg hurt so badly that she said she wouldn't be able to walk.  We did get her up, however, and I called for the Atria person to brig her meds so she could have a pain pill before we left.

But, since we were going out, she wouldn't give her Norco because it might make her dizzy and instead just brought Tylenol, which I know from experience does zilch for her pain.  I was miffed about it, but realized I had to let it go, so I did.  I just listened to her pain for the whole morning and felt helpless.

An electroencephalogram (EEG) is a test that measures and records the electrical activity of your brain. Special sensors are attached to your head and hooked by wires to a computer. The computer records your brain's electrical activity on the screen or on paper as wavy lines. Certain conditions, such as seizures, can be seen by the changes in the normal pattern of the brain's electrical activity.  The reason for all this is to find out if she is having seizures, which are causing her to pass out so often.

We got to the EEG lab and they took her back to attach the 25 electrical sensors to her head.

The tech said that the substance used to attach the sensors was like shortening.  This is what you look like after they are all removed

My plan had been to stay in the room and read for the 30-40 minutes of the exam, but the idea is for her to go to sleep so they turned off the lights.  I also started coughing and coughing and the tech had told me that if I coughed I'd have to leave the room because they wanted her to sleep.  I left the room and passed by the room where they were monitoring her.

I sat and read for half an hour and she eventually came out, still not sure where she was or what she was doing.  

I took her to lunch at Denny's and she ate a lot, though could not get comfortable in the booth, or in the car on the drive home.  When we got to Atria, I walked her to her apartment so I could carry her laundry for her, but I didn't stay.  I figured she needed a nap...and I definitely did too.  I came home and slept for two hours.

Tomorrow I am doing a theater interview at 11, though I've been so preoccupied with my mother, I can't even remember what the show is about.  The interviewee is someone I've known since he was a little kid and I'm doing the interview at his parents' house so they can babysit while we talk.  I must read up on this play before I go!

But then in the afternoon I'm taking my mother to the hairdresser's at Atria to get all of that goop out of her hair.

Saturday I have absolutely nothing to do and I don't intend to go to Atria.

Conferences

Another day of "mom-stuff."

It started at 10 when we went to Atria to meet Sean, the nurse who does assessments for her long term care insurance company.  Ned came too and was invaluable, keeping her "entertained" with jokes and explaining things to her.  Every time Sean asked me something and I answered him, my mother would mutter to Ned that we were talking about her and not letting her know what was going on.  I would try to explain what I had just told Sean, she would tell Ned she didn't understand a word I said and Ned would explain it to her over and over again. He was very patient and the day would have gone so much worse if he had not been there.

Finally someone has given her a comprehensive mental health evaluation, the results of which didn't surprise me, but I wish it had been done when I first asked for it >10 years ago (and several times since then) so we had a baseline. But this is better than nothing.  Most questions she couldn't answer (including how old she is), and she could not completely copy a simple figure he asked her to copy (two overlapping 5-sided figures.  She drew one.)  She aced the physical part, for balance and that sort of thing, but anything that involved mental calculation was pretty much a disaster.

I had to laugh when he asked her how often she went out of the building and she told him she occasionally went out for walks, sometimes to go shopping.  Since she is afraid of going out of the building, doesn't know where the nearest store is and has no money in her purse..I don't think so!

I had dropped off her meds with the front desk and realized that her Norco, the pain med, says one tablet 2 times a day, but the doctor said to start with half and see how that goes.  Since it seems to be working with just a half, I mentioned that she was only getting half.  They told me that without an order from the doctor, they would follow what was on the bottle.

So I came home and emailed the doctor.  Her nurse called back and said that Atria had also called them and they were faxing over a revised prescription.

Then it was time to go to the conference with Cindy, my dentist, about the exam she did on my mother a couple of weeks ago.  

There are lots of problems, but only one that is dangerous enough that it should be taken care of now (an extraction). Cindy is so good and so understanding.  Given my mother's age, she says that the remaining problems can be on a "watch" basis and if she starts having pain, we can deal with them at that time.  Cindy, like me, wishes she knew how much longer my mother has so she knows which dental problems are important to deal with and which are OK to just let go for now.

So I had the whole rest of the afternoon with no Mom to take care of.  But she has an appointment at 10 am. tomorrow for her EEG, an appointment which is in Sacramento and I should allow an hour to get there, because of rush hour traffic. When they set up the appointment they told me to tell her to stay up late and get up at 3 a.m.  Yeah.  Right.  I kept saying "you understand she has dementia, right?"  I guess the idea is they want her sleepy when she comes in, but since I'm going to have to wake her at about 8:30, that's probably a given.

Assisted Living

a meeting with Melissa, the patient services coordinator, to discuss the next day's visit by the long term care nurse, to assess my mother's approval for a claim against the policy for which she has been paying >$3000 a year for decades.

First we went to give her the evening pain pill.  She was still in pain but her mood was significantly better.  I remembered when my friend Phil Dethlefsen, who was on all sorts of pain meds, told me that they didn't take the pain away, but they just made him care less.  When the woman who has been checking on her for meals came, she was delightful toward her, and happily went off to the dining room without even worrying about leaving Walt and me behind.

After we left the apartment, we went to Melissa's office and discussed her "action plan."  As of today they will take over giving her the meds, which takes a huge load off my mind.  We also decided to put her on "escort" services to take her to meals.  She seems to enjoy the camaraderie of the caregivers and has no problem going with them to meals.  This may eventually increase her involvement with Atria, but I won't hold my breath.

I had to sign forms for my mother as her power of attorney and I have to admit it felt like putting her in the home.  Nothing really changes except Atria will have more involvement with her (and it will cost ~$800 more a month), but still it felt disloyal doing this without her knowledge, though she always seems OK with whatever I suggest.  Still, it was harder on me than I expected and I cried to Walt when we got home that it was "tearing me apart"

In fact, I couldn't eat, and fell asleep watching TV, and slept all night after James Corden woke me up and I staggered to the couch to finish the night.

All things considered, though, in the cold rainy light of day I am relieved to know that they will be keeping an eye on her, that she will get her meds regularly, and that she may now eat more than cookies at lunch and dinner. I won't feel quite so guilty on days I don't go to Atria.