Monthly Archives: September 2016

Irrational Desires and Hospital Nightmares

After a night in the hospital not sleeping due to Mom’s delusions, hallucinations, and attempts to get out of bed, I am trying to adjust my expectations of life.

Expectations

It interesting the things that we decide we want out of our lives when we are children or in early adulthood. During that time in my own life, I decided I wanted one of my parents to die a natural death. My father hadn’t, so that left my mom.

Although dementia is a natural disease, the way my mother got it was not via the usual normal slow progression.  Instead, it was the result of an event—an accident, which was not my mother’s fault.  However, it constituted a medical event that catapulted her into dementia. One week she was bright, witty, and articulate except for the occasional search for a word (the same way I struggle at 27 years younger than she). The next week, she was in the hospital after almost dying and not herself any more. Her accident caused an acute stage of rhabdomyolysis (muscle breakdown). Her creatine kinase levels were 4,000 times what is normal. Mom was therefore in a cardiac ward.

Hallucinations, Delusions, and Confusion  

When I stayed overnight with her in the hospital, she was hallucinating that there were cats playing by the foot of her bed. She also had delusions.  One was that the tv was a window through which people watched her.  Another was that the hospital hallway was a place she regularly walked down to listen to people singing in a choir.

Mom was confused and didn’t know me.  She thought I was a stranger, her mother, my sister. Mom asked if I had children, how the weather was where I came from. She was very polite as she clearly attempted to make conversation with a new acquaintance who just happened to be her daughter. Then she started calling me “Mom.”

A Sliver of Logic

Mom asked if her kidneys were okay. She remembered that her doctor had had her go to a class related to kidney problems. Mom was worried, and I thought somewhat logical in suspecting that was why she was in the hospital. She wanted to know truthfully, did she have what her mother had — cancer of the kidneys.

Paranoia  

Mom was paranoid.  The staff got her out of her bed and into a chair for dinner while they remade her bed.  Mom thought that the chair would tilt and drop her down a chute to the basement where people would murder her. She clung to me and begged me not to leave her there.

Loss of Basic Skills

Mom couldn’t feed herself, so I tried to feed her something. She had been days without food or liquids. She kept doing weird things with the food and the utensils. Even eating with her fingers didn’t work. Mom just didn’t understand what she was doing, and her hand-eye coordination didn’t work at all.

Hospital Nightmare

The night was an eternity. Mom had been through a horrible ordeal and was up until about 3:00 a.m. the night before after the EMTs brought her to the hospital. I thought that surely Mom would sleep fairly well. At 8:00 she did fall asleep, and I darted downstairs to get something to eat for dinner. I hadn’t eaten since breakfast. The cafeteria was closed. I got something out of a vending machine. I can’t remember what. I was back up at 8:10 to find Mom with her legs dangling over the side of the bed, her gown around her waist. “Help me. Help me,” she whimpered.  She had tried to get up.  She simply could not remember that she could not stand.

From then on, we were caught in a cycle.

Step One

Mom frequently wanted to go to the bathroom. It was difficult even with help from staff to get her up and to the commode. She couldn’t stand on her own. Mom clutched me, whispering desperately, “Don’t leave me with these people.”

The staff was bitchy and annoyed with her for thinking she needed to go to the bathroom so often. They made comments to each other as if she wasn’t there, as if her feelings didn’t matter. “Oh, she just thinks she has to go.”  They were not happy when we finally got her onto the commode only to find she really didn’t need to go.

Their faces revealed their annoyance, as well. I wanted to slap them.  After over two days of being on the floor, lying in her own urine and feces, it didn’t seem odd to me that Mom wanted so much to get to a toilet of any kind.  I wanted to yell at them to have some compassion or to at least consider that this was part of their job.

Step Two

The next step in the cycle was Mom eventually falling asleep again. But never for long.

Step Three

Then, five or ten minutes later, I could see her legs start to kick the blanket off, and Mom would try to get out of bed.  I had to watch her continually so as to stop her.

And Repeat

Then Mom would ask to go to the bathroom again. Back to Step One.

Finally around 10:00 pm, I begged the hospital staff to watch her so that I could at least go to the bathroom. (Wanting to pee is a family trait, I guess.)

This cycle went on and on. In spite of her ordeal, Mom never slept for more than five or ten minutes at a time that night. There was no sleep for me. Around 5:00 a.m. she actually slept for 45 minutes straight, but I couldn’t relax enough to do the same. Of course, I kept waiting to see her legs start to kick the blanket off again.  I was in the same clothes for 34 hours before I could finally shower and change that evening. I’m too old for an all-nighter, especially one so stressful.

It was a nightmare, but a nightmare for both of us. I cannot convey how distressing it was. As I said, Mom had no cognitive concerns pre-injury, and now she was completely . . . out of her mind?

Expectations Unmet  

So, what I’m getting to is this: My mother was robbed. There was a mugging, and Mom was robbed of herself. I feel robbed.  I just didn’t think it was too much to ask that one of my parents die a natural death. But I guess it was. I can’t believe how disappointed I am. It’s as if I somehow expected the wish I made over 40 years ago would just have to come true. I’m trying to get over this feeling of self-pity and betrayal.

I had no right to expect I’d get what I wanted. Living in America, I am privileged. My country is not ravaged by civil war or by out-of-control disease and poverty. If I stay out of a gang, take certain precautions about where and when I’m out and about, don’t drive under the influence, drive defensively, and don’t carry toy pistols in my pocket, I have a degree of expectation that I will be safe. How did this happen?

It was an accident, and accidents happen. I know this, and yet I’m feeling so sad and betrayed. I think I was stupidly naive to want what I wanted.

For just a few of related posts from this blog, click here for “Dealing with Delusions and Memory Loss,” click here for “Inconsistent Memory vs Nightly Rituals,” and click here for “Meeting Financial Challenges, especially the section entitled “The Trip.”

 

Hide and Seek, The Dementia Game

Hide and Seek was a fun and exciting game when we were kids, but now not so much. Our current version goes like this—Mom hides objects (usually her wallet or her apartment key), and my sister who lives closest to Mom searches high and low for them. The rest of us receive emails like this:

“She has turned into the Easter Bunny who loves to hide her precious eggs—her wallet, jewelry box, money, keys.”

Another time—“So, this weekend I searched for keys, glasses, and wallet. Found all three, and $20 stuffed at back of her undie drawer. Got to laugh.”

After a while though, it became less amusing.

The Game

My sister soon caught on to Mom’s favorite hiding places just like when you were a kid, you knew that your younger sibling tended to always hide in the closet or behind the drapes in the living room. At various times, my sister found Mom’s wallet hidden under clothes in the dresser, shoved in the bookcase, or under her pillow. One day, she looked in all the usual places to no avail. Getting irritated and frustrated, she then branched out, searching all over Mom’s apartment, including in her walker and even in the refrigerator. Still no luck.

Frustrated and out of time, my sister got our mother up out of her armchair to head down to the dining room. Just to be thorough, she lifted the chair cushion. Yep. There it was. My mom had been sitting on it all along.

I think my sister was internally blowing her top. She confiscated the wallet and took it home with her. “I now have her wallet as she is getting better at hiding with each visit. So, if she says she is missing her ‘purse’ or says that someone took something, you will know it is her own doing or that I have it and you can reassure her.” I applauded my sister’s self-defense measures. Problem solved.

Level Two

The keys presented a different problem. Mom had an apartment key and a mailbox key. My sister confiscated the mail key early on, but Mom had to maintain possession of her apartment key. Frequently Mom thought she’d lost the keys, but had merely shoved the plastic bracelet they were on so far up her sleeve that she couldn’t find it. It wasn’t unusual to experience what my second sister did during a visit. “When I got her for lunch, she said she couldn’t find her keys and was looking all around for them. They were on her wrist!”  (For an example of how Mom losing her mail box key complicated life, click here to read “Immigrations and Dementia.”)

If the keys weren’t actually on Mom, there were some other obvious possibilities. Sometimes, in taking off her shirt the night before, the keys came off with it. A quick search in the hamper or amongst the clothes by her bedside usually turned up the missing key. And sometimes not. Then it was check the walker, check her dresser, check her bedside table, check her armchair. The key generally turned up. “She lost her key again this week. I found it in a drawer.”

However, as with her wallet, Mom seemed to get better at hiding the key. Over a year ago, we started receiving emails from her assisted living facility. “Your mother has lost her key. We searched her apartment on Monday to no avail and as of yesterday they are still missing. Please contact us regarding a new set.”

My sister dutifully went in and hoped to find them. Most of the time she did, but sometimes they were not to be found. “After 45 minutes searching today, I gave up.” My sister let us know that she could order a new set at a cost of $25.00 from the facility, “but given how frequently she loses them, I’d like to wait a week or two to see if it surfaces. I have ordered four sets so far. I’m thinking an implant might be a good idea. If she can just scan her forehead to open the door, then I think we are good!”

This went on and on, with all of us frustrated with the situation and the unnecessary mounting cost. And then the day came when Mom got to the point where she needed help with all her transfers due to her fall risk. The responsibility of the key fell to her aides. It’s an ill wind that blows no good. Another problem solved.

The Tissue Issue

So, with no wallet or keys to hide, Mom moved on to hiding tissue boxes. I know. Huh? You have to understand that tissue is very important to Mom as her nose is running daily even though she is not. My sister once found four boxes hidden under her armchair as if they were golden tickets to Willy Wonka’s chocolate factory. My sister sent out another venting email. We joked about gluing boxes to the walls of her apartment.

My brother put the problem in perspective, “I don’t see losing Kleenex as an issue since she usually has half a box stuffed up her sleeves.”

Good point, but Mom worries about her lost treasures.

Hide and Seek, Solitaire Version

As annoying and time consuming as Hide and Seek is, it is occasional and nothing compared to Mom’s internal version of the game. Instead of objects, she loses and hunts for her memories. Playing Hide and Seek with your memories is absolutely no fun at all, and increasingly she is unable to find them.

Immigrations and Dementia

This is a long one because it is just that crazy. Please hang in there because it’s totally worth it to discover how Immigrations views dementia and the hoops you have to go through to stay in this country.

In early January, my brother and I took Mom to a medical appointment. While I was waiting in line to check her in, I idly viewed her Residency Card and realized that it expired in April, three months later. Mom is not a citizen and has to renew her card every ten years.

And so began the odyssey that continues as of the date of this post, nine months later.

Optimism

I spoke with the Immigrations people and started Mom’s application. Due to her “disability” (dementia and a fall risk), they said they would send someone out to her assisted living facility to take her fingerprints, do her biometric interview, and go over her application so that she would not have to go to San Francisco. (That should be interesting. “What’s your name?” Mom is fairly good at knowing her first name, but that’s about as far as it goes.) Once they received and processed her application, they would call for an appointment.

First Challenge

My sister took the application in for Mom’s signature. My sister watered the plants, picked up laundry, and did the regular Easter egg hunt for Mom’s keys and wallet.   Mom apparently just shuffled the papers around, but did not sign the form. That was before we realized she didn’t know how any more. My sister got home and realized the signature line was blank. She returned for another try, and the application eventually went off for processing.

The Response

In March, a form showed up in Mom’s mailbox. It probably sat in there for a while because Mom finally hid her keys in a place my sister could not discover.  As a result, my sister was unable to pick up Mom’s mail.  (To read Hide and Seek, The Dementia Game, click here.)

The letter accompanying the form notified us that Mom had an appointment in San Francisco with Immigrations for the following week.  The letter required a response prior to the appointment.  Immigrations required that the letter be returned with a box checked either ‘reschedule’ or ‘unable to appear’ if the appointment time and date did not work.  Additionally,the letter informed us that our request for an in-home appointment must be made in writing with some supporting medical documentation.

There was no way we could get all this done in less than a week! My sister worried because the form warned that if Mom did not show up, Immigrations would consider the application abandoned. “Will they deport her?”

I called Immigrations. I was told we needed to submit a doctor’s verification of dementia and ambulatory issues. However, they assured me that as long as the letter and form were sent in, even if it was after the fact, her application would still be good. I was so irritated. When I first started this process her case worker made this sound like it would be so easy.

Second Challenge

I’m not certain which is more annoying—Immigrations or Kaiser. You can never make a direct call with Kaiser. They take a message, and by the time it gets to your doctor’s office, it has gone through so many people and permutations, that it is like playing the game “Telephone.” You would not believe how it ends up.

I called Mom’s doctor to ask her to email a statement regarding Mom’s limitations so that Immigrations would send someone to do her biometric interview at her residence. There were three falls the previous December that prompted a visit to her doctor, so that requirement didn’t seem too hard to substantiate.

I received a call from someone at the doctor’s office asking what biometric equipment Mom needed. Uhh. Trying not to scream, again I explained. “We need a letter from her doctor explaining why Mom cannot travel to San Francisco. Then they will send someone to Mom to conduct her biometric interview. This is for Immigrations. We really don’t want her to be deported.” (Do you understand the words that are coming out of my mouth?)

That person took my phone number and set up a call for me with the doctor the next day. I waited around the following day while the poor doctor spent almost half an hour trying to call my sister who was at work before calling me. (Don’t ask.) After I explained exactly what we needed the doctor to say, the doctor said, “Oh, I thought she needed some biometric equipment.” (Of course you did.  Your staff sucks!  Silent screaming again.)

The doctor wrote and faxed a letter to my sister because my sister has power of attorney. Later that day, my sister emailed me, “It’s a miracle. I actually have it in hand!” I told her she must be hallucinating.

All that went off to Immigrations.

Third Challenge 

Four months later, in July, I sent the following email to my siblings: “Just in case any of you wondered whatever happened with our efforts to renew Mom’s ten-year permission to reside in the country legally, I have the following update:

     I truly figured that they had forgotten all about her, but I got a call from Immigrations today asking if Mom still wanted her green card. Instead of telling them to stuff it, I summarized where we had left off, which was that they were to send someone to her for her interview. They gave me a number to call to check on the status of the application.

And now We Veer Off into the Truly Disturbing Part.

     I also fended off their efforts to get Mom to become a citizen. (This happens at every single call.) I explained that Mom has dementia and is not able to study or pass any kind of test. They informed me that she could get a medical excuse. (?) The person I spoke to then tried to wow me with the awesome benefits of Mom being a citizen. Was I aware there was a presidential election this year? (Oh, gee, no, Mister. I’ve been living in a cave on an island in the Pacific with no contact with the outside world, which is why I am talking to you people on a phone!)

      Well, anyway. Get this. Mom would able to vote in the current presidential election (!!) and would further benefit by reduced fees for her next renewal (in ten years. Mom is now going on 92.) I found this somewhat disturbing as I already explained to them that Mom has dementia to the point that she cannot understand or complete citizenship, so the encouragement to vote seemed rather alarming. Maybe they figure most American citizens are cognitively challenged so no big deal. And we do have a stunner of a candidate this year, so I can’t really argue with that view. Still, I found it difficult not to yell, “WHAT THE HELL ARE YOU THINKING?!)

     Emphasizing that she did not have the mental capacity to vote and that I didn’t expect her to live another ten years to take advantage of the fabulous reduced rate (buy now, get one free) finally made the guy give up.”

Dispair and Alarm

My siblings were naturally appalled at the idea of Mom voting and who she would vote for. My brother opined, “She would actually be an enlightened voter comparatively speaking.”

I promised to keep my siblings updated as Homeland Security considered how much of a threat my 91-year-old mother was. I also advised my uncle in England not to worry. We would give him ample warning if the U.S. decided to deport her.

Fourth Challenge

So, the “status” I obtained through a recording was that on June 29th a letter had been sent to Mom requesting additional evidence. Big effing help.  Getting annoyed with them (yet again), I stayed on the line to talk to a human, gave him all history to date, and expressed concern that we were just going in circles.

This man had no access to specifics and could only advise me to wait for the letter to show up, but assured me that our response would keep her application open. We were now three months past the expiration of her card.

Reality check:  This is all for a 91-year-old English war bride. Can you imagine what it’s like for people today???!! I find myself tempted to say many things here that could get me in trouble and probably get me deported. Use your imaginations.

The letter arrived. They now wanted within 87 calendar days from the date of the letter:

  1.  “2 passport style color photos formatted as indicated in attached photographic guidelines.” (Nothing was attached. Why are we not surprised?)
  2. A medical doctor’s certification on letterhead. (I am not certain if they found what was previously submitted on the form they sent for the same purpose to be insufficient or if they just want all evidence together at one time.)
  3. (The kicker) Local police clearance letters from every place lived in during the past 10 years. (What the heck is this?? This is totally ridiculous. My sister responded, “She could be a felon you know.  She has been known to steal napkins off the dining room table. I am sure she is using them to plot out some terrorist attack. I am thinking of writing Obama; perhaps the Queen. Maybe we could have a new ‘Yalta Conference.’ I think this is all because she is not showing up in person, albeit I don’t understand why a police check is now required. If she was in front of them would they know she had just bombed another country?? Crazy!!”)

Once Again Into the Breach!

I called Immigrations AGAIN!! because we are best buds to ask about the photo requirements and complain/ask about the police clearance letters. Mom never had to do that before. Why now? I imagined it was just a letter from them saying she had no arrest record. However, it seemed so unnecessary. Do they mean to tell us they do not have access to FBI and police data? Thank goodness Mom lived in the same town for ten years. I also asked why they provided a form that the doctor filled out months ago, but now wanted letterhead.

I was given a website address to get the photo guidelines that they did not provide. They told me that even though the doctor sent her info before, they were requiring the same info on letterhead. (Arbitrary duplication. Plus, they have no idea that dealing with Kaiser makes you want to stab yourself repeatedly in your right eye.) And, I was told that yes, we do have to get a letter of clearance from the police.

The police station in her town confirmed that this is a normal requirement now and not just because Mom wasn’t coming to them. We had to pick up a form in their lobby to fill out and have Mom sign. Once they had it, they could provide the letter in a week. Oh, and by the way, there is a 71.00 charge. What a racket! Good thing Mom only lived in Livermore in the past ten years or we would have multiple charges in multiple cities. We already paid 170.00 to start the application, plus another 450.00 when we sent the application in. Now this.

Regret, Regret, and Self-Loathing

Oh, how I wished I had never noticed her card. Why am I so stupid? Why do I read things? Damn it! What would they have done? Come looking for her three years later? Or never?

I was fantasizing about letting her application lapse, but didn’t know what would happen now that I had started the process.

Anglo-American Alliance

Our uncle in England emailed, “I have alerted the British Gov’t that we may be swamped by GI brides deported from the USA. They have doubled the size of our Royal Navy so we now have two ships instead of one. Thanks for keeping me in touch.”

I let him know that we were praying that none of Mom’s criminal activity (stealing looks, robbing Peter to pay Paul, and stabbing lettuce) has ever attracted the attention of the police. I signed off, “Every new requirement buys the Royal Navy a little more time should we fail in our mission. Intrepid is counting on us all.” (Sometime read the book, A Man Called Intrepid.)

Still In Limbo

At the end of August, I flew up to visit Mom and my sister and brother-in-law. Three trips to the police station got the request for the clearance letter rolling. Mom had to sign it. I had to tell her how to spell her name letter by letter, so great signature. You should see it. My sister got the doctor’s letter. I will crop the photos which I took at Mom’s residence. Next week when the clearance letter is ready we can send all this to Immigrations and wait for the next set of hoops to jump through.

We have been at this for nine months. We could have had a baby by now!!!

PLEASE REMEMBER TO VOTE!  (Wisely, if you can manage it.)