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Confabulation Can Be Wonderful

There is nothing like a little confabulation to add joy to your life.  Confabulation is when people make up stories to explain things.  People with dementia are not lying.  They believe what they are saying is true.

Living a Fairy Tale

About five years ago, I gave my mom a pair of Keds I bought and then decided were slightly too small for me. She loved them because they zipped up. Once she was living in the assisted care facility, I noticed that they were pretty much the only shoes I ever saw her in. So I decided it would be nice for her to have some variety.

I ordered her a similar pair in pink because my mother favors the purple-pink colors for her wardrobe. When I flew up to visit her for a few days in September, I brought them along and anticipated a welcomed reception on her part.

Not to be. She didn’t like the color. It was too “orangey” a pink. I hid my disappointment and told her I’d return them for the pale blue option. I reported my failure to my sister when I returned to her house at the end of the day.

My sister, God bless her, told me, “Oh, I wouldn’t take what Mom says too seriously. She changes from day to day. Why don’t you just leave them in her closet? At some point when her aides are dressing her, they will pick them out. She probably won’t even notice.”

The next day, after our outing and a long talk in the lobby afterwards, I walked Mom to her usual table in the dining room. Then I made several trips ferrying supplies, laundry, and miscellaneous facility mailings from my car up to her apartment. I also brought up the shoes and placed them in her closet.

And They Lived Happily Ever After  (The Confabulation)

About three weeks later, I received an email from my sister telling me that she noticed Mom was wearing the pink shoes when she visited her over the weekend. My sister thought I would get a chuckle out of their conversation.

My sister told Mom, “Your shoes are so pretty. I love the color.”

Mom replied, “I think so, too, and I got them for free!”

My sister expected Mom to say that one of her aides had given her the shoes as a gift, but Mom had a much more elaborate story. It went like this: “There was this man walking around here. He asked if I wanted a pair of shoes. I asked if he was selling shoes. He said he had a pair of shoes that someone had bought but had left, so he was looking for someone who they might fit and asked if I would like to try them on. They fit, so he said I could keep them.”

I thought this was adorable. Mom is Cinderella, and the shoe fit!

Note: For a great article about confabulation, click here  to read “Confabulation in Dementia: What Is It and How Should You Respond?” by Esther Heerema, MSW.

For another post from this blog about confabulation, click here to read “Creative Conversations.”

 

Forgive and Forget: Humor with Dementia

It’s a blessing being able to have a sense of humor about yourself and others.  One doesn’t usually expect that someone with dementia can retain that wonderful coping skill, but it is possible, at least for a while in any case.

I was sitting with my mother at her care home, talking with her and teasing the staff. Mom said to me, “I don’t know what you’re going to do when I’m no longer here.”

I startled. “What?”

“Oh, I see.,” she responds slyly.  “You’ve got me . . .” (pointing down) “underground, you naughty girl.” She’s laughing.

I’m laughing, too, but also wondering what the heck she’s thinking. She is clearly making the connection that coming to visit her is a fixture in my daily schedule.  However, where is she planning on going, confined to a wheelchair as she is?  I just can’t picture her hopping a bus, nor even knowing where she would ask to go. Or is she contemplating returning to Northern California where she was previously living?

“Well, I may not be” (pointing) “here. That’s all,” she explains.  Still laughing about my assumption that she was talking about her eventual death, Mom raises her chin and places a hand over her chest. “It’s a good thing I’m a forgiving person. It’s one of my . . .”

“Finer qualities?” I fill in.

“Yes. I’ll forgive you. Forgive and forget.”  She is magnanimous, and I’m still trying to figure out how I ended up needing to be forgiven.

“Well, thank goodness,” I say, relieved to be let off the hook.

Practically choking with laughter, she adds, “Of course with me forgetting is easy.”

“Lucky for me,” I laugh.   This is priceless, I think.  She’s able to see the humor and make a joke at her own expense.

“Yes.”

Mom may have dementia, but she can manage to joke about it and zing me at the same time. I have to work hard to keep up.

Surprisingly, there are many humorous aspects of dementia.  Several of the posts on this blog include humorous occurrences or conversations.  For a few, click here for “Immigrations and Dementia, click here for “Mom Discovers I Am Her Daughter,” click here for “Confabulation Can Be Wonderful,” and click here for “Care Home Surprises.”

 

Upside of Dementia, III: Preserving Family History

When a parent has dementia, preserving family history almost seems to slip away before your eyes.  This is the time to talk to your loved one about whatever they can remember, which will most likely be their childhood.  It is also the time to reach out to extended family for more recent information.

Mom asks me questions about her family because she doesn’t remember much beyond the childhood and young adult stages of her life. Most of the time I can fill her in, but sometimes I can’t.

One of her brothers settled in Africa, married, and had two children. I know my cousins’ names, and that is all. We’ve never met them. I don’t know if they still live in Zambia or if their mother, who was from Yugoslavia, is still alive. Their father, my uncle, died years ago.

Preserving family history is a precious undertaking, and certainly at least knowing about remote relatives is important even if there is little likelihood of ever meeting them. I have tried searching for my cousins on Google without success. Mom’s questions as well as my own spurred me to reach out to my remaining uncle who lives in England for whatever information he has. This has led to finding out my cousins left Zambia and moved to South Africa decades ago.  Their mother is still alive.  I now have information about employment, marital status, and current names.  This is a huge help which will allow me to find out even more.  A few more years, and this information would no longer be available to me.  Carpe diem!  Seize the day!

Much like having aging parents makes gathering family history pressing, so does dementia when it strikes at any age. There is little opportunity left to find out information, so reaching out to other relatives is a vital resource. I urge you to do it. Now.

Click here to read Upside of Dementia, I: New Relationships.

Click here to read Upside of Dementia, II: Conversation.

 

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.)