Parental Journal 39 from Planet Elderly: Melting Plastic in the Oven and Stashed Cash

Monday, January 25, 2015 – 7 p.m.

I’m pretty sure I stopped the house from burning down, or at the least prevented toxic plastic fumes from overtaking the kitchen.

Mom made sloppy joes and had put some frozen fries in the oven.  I was making salads and thought I saw her take a small plastic container of vegetables over to the microwave.  Nope.  She had put the container on the cookie sheet where the frozen fries were baking at 400 degrees F.

I don’t even know how I discovered it.  For some reason I opened the upper oven door and instead of saying, “Holy Shit!  What the fuck are you doing, Mom?” … I calmly said, “Oh…no, Sweetie.  We don’t put plastic in the oven.”

I calmly removed the plastic container, transferred the fries to a tin foil pie pan that’s probably been used for the past 25 years to warm things up, and went back to making the salads.

During dinner we were both rather quiet.  We didn’t discuss the incident.  When doing dishes (by hand, of course) Mom washed the plastic container and put it in the drainer for me to dry.  “I don’t think you want to keep this anymore,” I said.  “It no longer has a bottom.”

“Oh, yeah,” she replied.

So that was today’s highlight.  Yesterday it rained money.  Well, not exactly.

I was busy working on some insurance papers for my folks and Mom could not find the checkbook.  A.G.A.I.N.   In the process of looking for her checkbook, she took out envelopes of bills….20’s…10’s…100’s.

I was speechless.  What’s with the I-don’t-have-any-money phone calls I coached her through for the past 10 months?  Where did all this money come from???

Who knows?  Just chuck it up to children-of-the-depression syndrome and move on.

So we did.  We counted…recounted…put it into piles…and talked about what to do with it.  Today we safely deposited 90% of it into proper bank accounts and kept a bit aside for cash on hand.  Mom will sleep better.  Said she’s been worried having that much cash around.

Visits with Dad these past two days have been nice.  He’s been alert and quite talkative, commenting on this and that.  He would even joke a bit…clever devil that he can be at times.Dad Jan 25 2016

Dad doesn’t maintain a sustained conversation of any kind.  He just makes comments now and then or sometimes respond to questions like “How are you?”  or “Did you have a good breakfast?”

Just for fun, I wrote down some of his comments from yesterday:

“I’m doing great.  I’m watching all the girls.”  Then he chuckled.

When Mom showed him a donut she brought for him and said he could have it after he had lunch, he said, “Okay, I’ll force it down.”   (He has always loved donuts.)

“So take your time and have a good donut,” he said laughing.

“You’ll know I got loaded.”

“Your hands are still warm,” he told Mom.  “Well, I’m still alive,” she said.  “You bring me alive.”

“A load of corn.  (Mom looked at me with questioning look.  I just shrugged my shoulders.  Maybe Dad was a farmer in another life.)
“Mom likes cantaloupe,” I told Dad.  “Yeah,” he replied, “Canada is a nice place.  You’d enjoy it.  You’ll get up there again.”    Yup.  Hope to do so someday.

At one point I asked Dad how old he was.  He wasn’t sure, so I asked what year he was born.  “1822,” he said.    “Oh…I think it was 1922, Dad.”   “Can that be right?” he asked.    “93,” I announced.   “Me?” he asked…then laughed.  “Well I got my money’s worth!”

Then he turned to Mom and asked, “How’d you get the day off?”   She looked a little confused and then just patted his hand.  They hold hands most of the time they sit together.  It’s sweet.

It was fun to laugh together and see Dad smiling so much.

When it comes to Mom, she’s been fairly calm these first two days of this visit.

Of note:

She had trouble using the microwave to heat frozen vegetables.  She kept setting it for 5 seconds over and over and never did figure it out or ask for help.  “I’ll have to find the manual and learn how to do this.”  She’s had that microwave for over 20 years.

She had difficulty dialing numbers on the phone.

Still mistakes the phone and the TV remote sometimes.

Can’t use the TV remote very well.

Has difficulty remembering what day of the week it is.

Is having more problems being steady when walking…also a bit more sciatica pain.

Has recovered quite well from a bad cold.

Often she is not able to remember what she or Dad had for lunch.

Does not always take her meds.  “If I feel fine, why bother?”

On Monday Mom had a dental appointment scheduled for noon.  She wanted to call to make sure it was scheduled.  When she called she was told she is not on the schedule.  She gave me the phone and I explained who I was and that Mom had the appointment written on her calendar.  I was told, “She called Friday and canceled it.  She said her husband is sick and that she would reschedule.”  We rescheduled for Friday.

When I arrived, Mom had the thermostat on 76.  I’m accustomed to 65.  I snuck it down to 75 and so far she hasn’t said anything.  I sleep with the window open.

Special Surprise

Mom has a friend, Dorothy, who is in the independent living area of Victory Lakes.  They don’t see each other often, but visit on the phone.  Dorothy walked over to the dining area where Mom was sitting with Dad.  She took the basement tunnel path that connects various buildings. She figured Mom would be there…and Mom was thrilled to see her.

After lunch we sat together in the reception area and visited.  Dorothy lives with chronic pain due to a spine issue.  She also has arthritis and had hip surgery.  Last year knew she would have to change her living situation.  She moved from a large home to a one bedroom apartment and teared up when she spoke about the adjustment.  “This is it, “she said, “and I just have to accept it.  I can no longer stand up for long periods of time to cook and clean.  You just have to make the best of it.”

Hmmmm…as each of us ages and faces obstacles…as each of us loses the ability to do things we once enjoyed doing…as each of us looks at our mortality squarely in the mirror…will we make the best of it?

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Parental Journal 38 from Planet Elderly: Prepping/Packing for Next Visit

Monday, January 18, 2016

I’m spending this entire cold day in flannel PJ’s.  Will relax with reading, writing, napping, eating…the usual winter hibernation stuff.  Saturday I return to Illinois to help out with a few things.

On the agenda for the next visit:  a doctor’s appointment with Mom’s female doctor (Jan. 28), a meet and greet appointment with her new female primary care physician (Feb. 1), getting home and car insurance paid for the year, doing taxes.  I think it will all fairly smoothly…especially if Mom has done as I requested and just put mail on the desk upstairs.

Recent phone calls have been fine.  She has had a very bad cold, and then on top of that someone ran into her car when it was parked in the grocery store parking lot.  Neighbor Kevin was with her.

When I spoke with Mom on Friday she said they were taking the car in to be fixed.  However, she called me at 5:15 a.m. today asking if she had car insurance.  I gave her the name and phone number of her agent.  She is supposed to have that information in her wallet and in the glove compartment of the car, but she doesn’t remember that and I didn’t want to mention it.  That would have sent her off into a frantic search and since she told me she had been up all night, it’s best to keep things simple.  I reminded her that it’s a holiday and the insurance agent’s office might be closed.

Neighbor Kevin keeps silent.  No calls or emails from him.  No calls or emails from the staff at Victory Lakes where Mom visits Dad.  Thus, I assume things are going along as usual.  During recent phone calls, Mom sounded cheerful except for the days she was really down with a bad cold.

Will spend the next few days preparing mentally for the next visit and also preparing what to take.  I don’t know how long I’ll be up there.  It kind of depends on whether or not Mom’s new primary care physician wants to move ahead with some assessments and/or referrals and when those will be scheduled.

Meanwhile, Mom is happy to remind me as she did on the phone the other day, “I don’t need a babysitter.”  Of course she doesn’t; none of us senior citizens needs a babysitter…although some of us eventually need a “seniorsitter.”  Maybe.

 

Wednesday, January 20, 2016  2:45 p.m.

Just spoke with Mom to check in.  Car is being fixed.  She’s worried about the cost.  I told her she could bring her checkbook and they’ll write the check for her to sign.  “I don’t have a checkbook,” she said rather forcefully.

I reminded her of the gray checkbook that has the note “Mom’s Checking” on it.  Then she calmed down a bit.

I’ve started packing for the trip up there Saturday.  Weather will be cold, but at least not snowy.

Trying to get my energy and attitude up.   It’s slow going.

 

Thursday, January 21, 2016 – evening

Mom called this morning to apologize “for being so crabby on the phone yesterday.”  Told her I didn’t think she was crabby…just concerned about getting the car fixed.

“Is it all fixed now?” I asked.

“Yes.   When are you coming up?”

“Saturday.”

“Oh…good!”
Friday, January 22, 2016  11 a.m.

My mood is quite low today…has been for a couple days now.  I have a situation here in MO that is difficult and I’m trying to help as much as I can.  It’s heartbreaking.  Meanwhile, I’m gearing up for tomorrow’s trip up to stay with Mom for a while.

Things are mostly packed…but it’s so cumbersome.  My usual trip “baggage”:

A carry-on for basic clothes

Tops/coats/etc. on hangers and laid on the back seat

One satchel of folks’ important papers, etc.

One satchel of my reading/writing materials

One satchel for laptop gear/electronics

Printer – Will bring mine this trip, but will get a small, simple model to keep up there

Container of meds

Bag with toiletries

Bag with hot rollers/make up

Snow boots

Some food items for Mom and/or me (1 – 2 bags)

It all fits in my Ford Fusion.  Will pack a bit of it later today and finish up tomorrow morning.

It’s difficult watching two heartbreaking situations happening 400 miles apart…and I’m in the middle doing what I can bit by bit.  But that’s okay.  Things could be much, much worse.

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Parental Journal 37 from Planet Elderly: Tears and Confusion From Across the Miles

Friday, January 8, 2016  12:30 p.m.

I’ve been recharging the mental battery here in Missouri for about a week.  The phone conversations I’ve had with Mom have included tears and continued confusion.

Mom received mail about health expense refund program.  Could not understand it and was upset that it was sent to her instead of to me since I’ll be managing any health insurance issues for them.  Call received Jan. 4.

The evening of Jan. 4 Mom called to tell me she wanted to have her social security checks deposited into a checking account of her own.  I explained that this is already in place.  She has the gray checkbook with the note “Mom’s Checking” written in large letters on the outside.  Each month both her and Dad’s social security checks are deposited there.  She left the phone to go look for it.  Returned after having found it and cried as she said goodbye.    Maybe on some level she is aware that we have this conversation over and over and over…and it’s torture for her not to be able to remember that she does have funds easily at her disposal.

 

Mom in a panic because she received a call from someone at Walgreens profit sharing.  Someone was calling for “Victor,” and Mom tried to say he wasn’t there.  She was crying and upset.  She gave me the phone number and I told her I would call to find out what was going on.

I called and left a message.  This morning  (Jan. 8) the lady called me back.  She explained that Mom called her first; she then called my mom and could tell she was a bit confused.  The lady, Sue, was very kind and understanding. Both of her parents are 89.  At least now I know Mom generated the phone calls to begin with…not that she would remember.

Another panic call from Mom yesterday.  Received another piece of mail about health care refund fund or something like that.  I told her it is fine to put all that kind of mail in a pile on the desk upstairs and I will look at it when I come back on the 23rd.  Also told her she might receive some information we’ll need for filing taxes and to just put everything in a pile.  She said she would.   Let’s hope so.

Earlier this week I wrote a letter to Mom’s new primary care physician.  First appointment is February 1.  I gave some background information and highlighted some concerns.  I also included a document created by Dr. Leslie Kernisan who has an active blog Better Health While Aging.  She developed a quick start guide to help people check on elderly parents in five key areas:  Life Tasks    Safety    Physical Health     Mood and Brain Health    Medication Safety and Management.   I filled out the guide and sent it with my letter.

I truly hope the new doctor will have the right approach to helping my mom have better quality of life.  We have to first learn what’s really going on, and then move on from there.

In the meantime, I went ahead and put my Mom on the waiting list for Lenoir Woods here in Columbia.  It may never happen, but at least I have an option in the event that she has continuing problems and will no longer be able to live independently. Although I have Power of Attorney, I hope I don’t have to obtain legal guardian status.

During each visit I mention that it’s possible to move them both down to Columbia where it would be easier for me to be of assistance.  She usually ignores the suggestion or says she doesn’t want to be a bother.   Hmmmm.  How would one define “bother?”   I have to force myself to keep my mouth shut.

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Parental Journal 36 from Planet Elderly: End of Christmas 2015 Christmas Visit. Happy New Year? Meh.

Monday, December 28, 2015 6:30 a.m.

Winter storm warning in effect for today…mostly icy rain/sleet and strong winds.  We’ll sit tight and stay at home.

Been thinking about the “volcano of delusion” Mom experienced the other night.  In terms of cognitive functioning, such episodes would probably be considered “sundowning” (sundown syndrome).  Certainly glad these are not nightly events.

Yesterday we brought Dad the last piece of a pumpkin pie I made.  He loved it, and when he saw Mom enter the room, he had a big smile and said, “Well, there she is!!  Hello dear!”  Mom was thrilled.  Nice moment.

A quiet day overall yesterday – and evening.  I showed Mom the profile of a female internist and the comments people wrote about her.  All systems go.  I will call the doctor’s office today to set up an appointment and inquire about transfer of medical records.  I’ll make the appointment for a few weeks from now.  That will give me time to return to MO for a couple weeks and then back to IL…weather permitting.  At least when I return to IL, I’ll have snow boots and a winter coat with me.

Friday, January 1 2016  afternoon

A new year ahead, and I’m sure it won’t be dull.  Crazy and frustrating at times, but never dull.

Nice New Year’s Eve luncheon at Victory Lakes yesterday.  They had hats, balloons, noisemakers, and bubbling juice with the countdown at just before 12 noon.  It was fun, but then we heard a very sweet recording of “Old Lang Syne” and I ended up weeping.dad123115

Each day I have had my daily coaching reminders with Mom about bankbooks.  Wednesday she called Wells Fargo  and told the advisor that she didn’t have any money, so he sent a check via Fed Ex.  I took her to the bank and she cashed it yesterday.  I tried to tell her why she didn’t need to go into stock funds, but she just blew up at me and cried about being so worried about having money for food and gas.

I shut up and gave up.  Fine.  Found myself explaining less these past couple days.  It’s the same conversation over and over and over. The same tearful outbursts.  I need to just let it go.   I’ll just explain things again when I return in three weeks.

The next visit will include a meet and greet visit with Mom’s new primary care physician.  Mom gave the okay to set it up, and so I did:  Monday, February 1 at 2 p.m.   I was in a different room when I called to make the appointment, and the staff member assured me that it would be okay for me to send the doctor a confidential note of concerns about Mom’s cognitive functioning.  Fingers crossed that she will find a gentle and effective way to assist us in finding out what, exactly, is going on with Mom.  It may not be early dementia, as I’ve read.  But I know that I, her neighbor, and the staff at Victory Lakes who see her every day…we are all concerned about her confusion, forgetfulness, and daily crying spells.  It’s going to take a skillful doctor to guide her into a thorough check up.  I want to be hopeful.  Instead, I can just hear her say, “Leave me alone!  I’m fine!”

Side note:  Mom tells people about the police knocking on her door and how it scared her.  She is still angry about not knowing who called the police, although she said they were very nice.  Of course it was scary for her.  She’s lived here all these years and has never had a “wellness” check.  The other night she told me the police officer asked her who was president.  “I was just so flustered.  I could not tell him it was Obama.”

I return to Missouri tomorrow.  Need time to recharge the battery, do some planning, write to Mom’s new physician, and practice lots of deep breathing before I head back up Jan. 23.

 

 

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Parental Journal 35 From Planet Elderly: Christmas Visit 2015 Part Three – Volcano of Delusion

Christmas Day 2015 – early afternoon

I think I’ve had 3 hours of sleep in the last 24 hours.

Yesterday we experienced purgatory on Christmas Eve:  Wal Mart.

Mom decided she wanted to get Dad a pair of sweat pants as a little Christmas gift, so after visiting him we joined the multitudes at Wally World.  Too many people, too many fussy kids, too much stuff everywhere, too much traffic, too many impatient drivers in the parking lot.  Purgatory.  At least we survived it and headed on to lunch at Panda, a Chinese Restaurant in Grayslake, and not Panda Express.

It was our first visit to Panda, and we both had beef with snow peas.  It was delicious with a light sauce and fresh vegetables.  The portions were enormous, so we took half home and had a replay for dinner.

Overall, the day was fairly calm.  About 5 or 6 times Mom said we needed to go to the bank to get some cash, and I kept reminding her that we got some earlier in the week.    Her obsessional thoughts about having no money are deeply rooted and have a tight hold.  My reminders don’t stick.

In the evening she spent time sorting through little packets of cash here and there.  She counted money for about 30 minutes…over and over and over…adding up numbers on a piece of paper.  She finally announced that she had enough money for a few days and then proceeded to stash bits here and there.  I didn’t make any suggestions or ask any questions.  Instead, I watched a PBS special about elephants in Botswana, had a small glass of Christian Brothers Egg Nog with brandy and took deep breaths.

At 10 p.m. I went up to bed and Mom stayed downstairs to watch the news.  She wasn’t sleepy.

At 12:15 a.m. a volcano of delusion erupted.  I was wakened by an overhead light and a sobbing mother.  She was furious at Dad because he had been in the house…probably when we were at lunch at the Chinese restaurant.

I had a choice:  reason with her or enter her world.  I entered her world and from 12:15 a.m. until a bit after 5 a.m. I listened while she talked.  I’m typing with sleep deprivation, but here are some things I recall from “the all-nighter.”

**Anger at Dad for being so selfish and not ever consulting her about money matters.  There was evidence of her having spent time rummaging through drawers, as is often her habit.  She could not find her money or her checkbooks.  I saw her checkbooks on top of her dresser, showed them to her and she was very relieved.  Then she decided that because they were not in the regular place, Dad had not been able to find them when he came by earlier.  She seemed delighted that she had fooled him and laughed.

**Furious that Dad comes into the house and takes things.  “He can take it all, for all I care.  I’m through.  We’re separated.  I want to get a room somewhere and a job.  To hell with him.  I’ll leave my rings on until after we see him on Christmas.”

**She said we needed to take all the money out of the banks tomorrow.  Here I offered a fiblet: “Well, I think in Illinois they have a law that someone can’t take all the money out of a bank account at once.”  Her reply, “Well, you’re on the accounts.  I’ll take half and  you can take half.  That will work, won’t it?” I deflected and said we could plan better after Christmas.

**She decided she would not want to move the long couch into a small apartment.  Maybe neighbor Kevin would want it for his basement.  When she moves she just wants the loveseat hide-a-bed, the recliner, and the two side chairs.  She’ll have to think about what else to take.

**She told me about finding condoms.  “Where?” I asked.  “In his dresser!” she replied. “Maybe they were just old ones…like from World War II or something,” I suggested, knowing my Dad saved everything.  “Oh, no,” she said. “They’re fresh ones.  And we haven’t had sex in years!”     I just gave her a knowing gal pal look.

**At one point I asked her if she’d maybe come down to Columbia for a visit…just to get away for a few days.  She loved the idea…at least for a few minutes.

**Since it didn’t feel much like Christmas, she packed up all the decorations and I helped her carry them downstairs. She was positively giddy…laughing…almost manic.she put xmas away early 2015

**Once the decorations and tree were cleared away, she vacuumed and announced that she felt so free.  “I feel so happy now.”

By 5 a.m. she was still wide awake and I needed sleep, so I suggested we change the TV channel to Movieplex.  She parked herself in the recliner and settled in for some movie time.  I went up to sleep and the next thing I knew it was 8 a.m., Mom was all dressed up for Christmas lunch with Dad and she thought I should get up because “It’s 9 and we’ll be going to see Dad soon.”  She did not set her bedroom clock back one hour in the fall, and decided not to do it because in a few months it would be correct.

Then while I was getting ready I heard Mom sobbing in her room.  I went in.

“What’s wrong?”

“My jewelry box!  It’s gone!”

Sure enough, it wasn’t in its usual place on her dresser.

“Can I look in your closet?” I asked.  “Sometimes when you are worried that somebody might take something, you find a place to hide it.”

“Wait a moment,” she said.  “I think you’re right.”  She opened a garment bag, rummaged in the bottom and pulled out her jewelry box.  Then she sobbed.  “Can you please stay a few more days?  I just don’t know what is happening.”  I assured her I could stay a few more days.

Later Mom was not pleased with Dad’s reaction to her gift of sweatpants.  At first he did not want to open the gift, but I encouraged him.  Once open, I’m not sure he knew what it was, but he didn’t really react and she was offended.  I gave him my gift – a framed photo of the two of them.  He smiled and recognized Mom.  He did not recognize himself.  “That’s me?!” he exclaimed when told him.  “Well, how about that!”

When we sat in the community area of the Sunshine Wing, Mom was taken hostage by Wanda.  She insisted that Mom sit next to her and hold her hand. Wanda & Mom xmas 2015

Wanda, I learned yesterday, is 100…and bossy, but she likes my mom and Mom always reaches out to her with a greeting and a hug/kiss.  Wanda often screams in terror when showered and yells when someone tries to take her blood pressure.  She kept giving Mom orders as to where to she could and couldn’t look around the room.  Wanda looked at me and announced that I was her grandmother.  I just smiled and waved.

We had lunch with Dad and he was only interested in a salad and a hamburger.  Mom decided he would not want either of the other two choices, turkey or ham, so she ordered him a hamburger.  She said she might order a cheeseburger, but she changed her mind and ordered the turkey dinner like I did.  When her dinner arrived she said she didn’t order that, but I reminded her that she did and showed her the menu sheet she filled out.

She enjoyed the meal but was not happy with Dad because he did not touch any of his vegetables and did not seem to be happy that we were there.  He was awake and chowed down a salad and a burger much faster than usual, looking perfectly content, but she was not happy.  Toward the end of the meal she started to tear up as usual and decided to leave.  I waited for Dad to finish and then wheeled him back to the Sunshine Wing.

Once again, before leaving she tried to lecture Dad.  She was crying as she tried to explain to him how she felt.  One of the staff tried to reassure her that God loved her and she could give it all up to him, but she just said she had had enough.

7:30 p.m.

It’s been drama free for the rest of the day.  Mom has been busy vacuuming, doing laundry, and obsessively going through things.  At least we had no outbursts and I slept for a couple of hours.  When I came down after my nap, she said she wanted to go lay down.  It’s been quiet upstairs; I don’t hear her walking around.

******

Witnessing Mom’s delusional volcano last night underscored just how emotionally unstable she has become over these past nine months.  I also believe she has had other similar episodes based on troubling phone calls when she spoke of Dad getting inside and taking things.

She needs to see someone and I hope she will continue to agree to the idea of changing doctors.  I’ll go online and see if I can find a female internist with geriatric background …then hopefully talk Mom into scheduling a get-to-know-you visit and have her records transferred.  It will be important for me to provide background information to the doctor.

A change in primary care physician is the best option now for obtaining the kind of care my mom needs.  Despite her mood swings, tirades, and episodes, once she calms down she simply thinks, “I just have to take it one day at a time” and she dismisses any need for outside help.

The other option that concerns me and others is that she will have some kind of accident or fall and hurt herself and possibly others if she is driving.  It is difficult to leave her alone to her own devices, but neighbor Kevin continues to check in on her and assist when needed.

During this visit I have attempted to be more of a listener.  I don’t interfere with her routine or try to take things over.  She trusts me…and I’m trying to gently guide her in the right direction.  For some families, a medical emergency or catastrophe of some kind is the only way the confused loved one gets the treatment the family has tried to set up.  I’m hoping we are not in that category…that eventually she will wear out and admit she would like some help.

 Saturday, December 26, 2015 late afternoon

No drama today.  No tirades, weeping episodes…just a nice visit in the Sunshine Wing.  Dad ate well and Mom liked that he smiled at her.  Contrary to her plans during her volcano of delusion, we did not take all the money out of the bank accounts.  In fact, she didn’t even suggest that we go to the bank for cash.

Instead of leaving tomorrow morning as originally planned, I’ll do as I promised and stay another couple days.  I’ll return to Missouri later this week when the weather looks favorable.

Because of Mom’s delusional episodes, I will need to make more frequent trips to Illinois.  I’ve been going up about every 5 weeks, but that will need to change.

Short-term goal:  have a meet and greet visit with a new primary care physician who has more understanding of aging and cognitive confusion/decline.

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Parental Journal 34 From Planet Elderly -Christmas Visit 2015 Part Two (“Dont Get Married!!”)

Tuesday, December 22, 2016

At 6:30 this morning Mom said she had a doctor’s appointment.

“You do? Who with?”

“Dr. D,” she said.

“Oh, I thought you had your appointment with him last week on the 15th.”

“Maybe I better call and check,” she said.

“Sure, just call to find out what time you have an appointment today.”

She never called. Guess she decided that she did not have an appointment.
I was going to let her call so that her doctor’s office would see one example of her confusion, and she would also have another example of “being mixed up.” Most likely, she would not remember.

This morning’s visit with Dad was great. Dad was smiling and alert. His roommate’s daughter, Judy, was playing 12-string guitar and leading Christmas carols. We joined in.Judy 122215

Mom became upset with Dad at lunch because he would not eat the fish she ordered for him. He said it was okay to order it. She started to cry and told me she’d wait in Dad’s room. I wish she could just let some things go, but that’s not her way.

Dad and I just sat for a while, waiting for dessert to be served. Of course, he didn’t know why we were still sitting there. He kept looking at his table mates trying to maneuver forks and spoons…slowly and shakily. Then he made a bunch of funny faces and chuckled…like a kid.
He summarized his observation with: “We need all the special special. Bing. Bing. Bing. Bing!” Then he laughed.
“We sure do,” I replied…and I laughed with him.

Dessert never arrived, so I asked if he was done. He was and I wheeled him back to his wing. As we passed his room, I saw Mom sitting on the side of his bed, sobbing. I stopped and she came out. Dad saw that her eyes were red.

“What’s wrong?” he asked.

“You hurt me very much, Victor,” she said.

“I don’t know what happened,” he responded.

He could tell she was upset and he was, of course, clueless. He shook his head and shrugged. She became furious and told me to take him down the hall…that she was done!  I did as I was told.

I settled Dad near the TV. Other residents in the wing were finishing up their lunches. When Mom came into the area she went straight to Dad and quietly lectured him. I stood back a bit to let her have her space with him. I could hear her telling him, “I love you very much.”

Of course, he couldn’t hear.  “What?”he asked.

“I love you very much. You’re my life. I’m sorry you’re here. I wish you could be home.”

She wasn’t speaking loudly enough for him to hear, so all he could do was give her a confused look. Then she bent down and gave him a kiss and he kissed her back.

“You’re okay, kid,” he said…then he laughed.

“Don’t laugh at me,” she yelled. She made a motion to slap his hand and barely touched it. Then she left.

Dad became a bit agitated. It seemed clear to me that he could sense Mom’s emotions and he was confused. He kept wanting to figure out what we were doing and if he could come with. I had to redirect him and finally convinced him that everything was fine…we’ll see him soon…we need to go do his laundry.

On the drive home, Mom said she was sorry I had to go through this. She cried a bit and then settled down. “Don’t ever get married!” she said.

“Not gonna happen, Mom.  Been there; done that.”

Very gently, I spoke a bit about Alzheimer’s…explained how it is a difficult disease because essentially Dad’s brain is dying. That might have been difficult for her to hear, but it laid the foundation for my attempt to explain to her that Dad lives in the moment and loves her very much. I told her I hoped she could maybe relax a bit and not take his comments or expressions too personally.

“You know, Mom, if Dad took one look at me and said, ‘Holy Cow, she’s a weird one!’” I’d just shrug it off. It’s just something he says at the moment and he might not even know why. After you kissed him today he said, ‘You’re okay, kid.’ And he smiled a lot when we were singing carols with Judy.”  She nodded her head in agreement.

“This is a terrible disease,” I said. “It’s possible that one day he may not know who we are…he may not be able to say anything. If he says something you don’t like, it’s not the real him talking anymore. His brain is changing. Let’s remember his smiles and chuckles. I know it’s hard.”

Mom calmed down and when we got home I started making a chicken pesto dish. While preparing food we talked a bit about different things. Most of the time she kept asking about money and could not remember that she had her own bank books. She also thought we should go to the bank to get a hundred dollars, and I reminded her that we went yesterday and she should have some money in her special place. She went upstairs to check it out and find the bank books she does not think she has.

It’s late afternoon now. Things should be fairly quiet. I’ll read. Mom will watch “Wheel of Fortune” and probably snooze a bit.

Unfortunately, I hear her on the phone now…saying over and over, “Hello. Hello. Hello”…. telling someone her name.

Not sure who she called or why. At the moment, it’s none of my business.

Wednesday, December 23, 2015 – late afternoon

Overall, a nice day. Of course, this morning Mom said we should go to the bank to get some money and I reminded her that we did that Monday.

Yesterday the wife of Dad’s roommate asked me, “Is your mother still living by herself?”

“Yep,” I replied. She gave me a wide-eyed raised eyebrow look. She’s in the independent living unit on the campus and visits her husband each afternoon.

Today a staff person stopped by to chat. Mom and Dad were in the dining room and I was relaxing in the lobby.

“They’re both doing really well,” she said.

I figured that was my opener. “Dad is thriving,” I said. “Mom is now having some confusion and memory loss problems.”

“Well, yes,” she said. “She seems confused a lot. One day she left a bunch of things here and I worry about her driving. Would she consider living here?”

“Oh…no,” I said. (“Hell, no” is what I should have said.) “She’s keeping her house up, she’s keeping herself up mostly, and she is allowed to drive. She refuses to be referred to a doctor. She’s not going anywhere until she has to, plus she lives with enormous guilt because Dad is here and she is at home.” Mom started walking toward us, so the conversation ended.

The staff knows my mom well. They see her helping Dad…trying to help other residents when staff don’t want her to…crying when she’s mad at Dad…yelling when she’s mad at Dad…crying when she leaves. They also know her as someone who openly gives hugs and likes to laugh. They know I live in Missouri, so they look out for her. We are all aware of her cognitive decline. We all worry.

Mom’s cell phone has been missing for weeks. When she lost her keys this afternoon and emptied her purse, there it was on the couch with the other purse clutter.

“There’s your phone!” I said.

“Yes. You want me to keep it with me so I do,” she replied.

I didn’t remind her that she’s been telling me she could not find it. I just took it over to the charger and plugged it in.

Last night I told Mom about a visit friend Bonnie and I made to Lenoir Woods in Columbia. I told Mom that friend Lynette wanted us to tour it because her mom stayed there for a while. Rather than cut me off, Mom showed some interest. Maybe I can entice her to look at the slide shows mailed to me. It’s a lovely senior care community that’s well respected. I think it’s nicer than where Dad is now. It’s also a bit less expensive.

Well, small baby steps…to show Mom her various options. I know she is thinking about the future and what she will do.

Holiday bulletin board in The Sunshine Wing:  A thought for the day.

holiday board 2015

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Parental Journal 33 From Planet Elderly – Christmas Visit 2015 Part One

December 21, 2015  – evening

Damn!  I left the bourbon eggnog at home and forgot to take it with me when I left yesterday.

The drive went smoothly, but the initial visit with Mom was a bit unsettling.  Fortunately, she was pretty calm yesterday afternoon and evening.  She even made an effort to put out some Christmas decorations.

xmas decore 2015

Of note:

  1. She continues to believe that Dad comes to the house and takes money.
  2. She is royally pissed that the police came to check in on her and wants to know who contacted them.
  3. She continues to believe that she has no money.
  4. She wants me to be happy.
  5. She does not want to be a burden to me.
  6. She still thinks about getting a job.  Doesn’t want to do volunteer work; wants to be paid.
  7. She doesn’t “feel like Christmas.  I just don’t have it in me.”  It’s the first Christmas not being with her husband in their own home.  Of course she doesn’t “feel like Christmas.”

“So, what are you going to do this winter?” she asked.

“Not much.  I need to come up here every five weeks or so and help out…so it’s difficult to have any kind of job, even part-time.”

Her reply:  “Maybe it would be better if Dad and I died.  Sorry I ruined your life.”

Fortunately, I did not respond to that nugget.  I kept eating the slightly burnt frozen pizza she cooked for us.

We moved on to some TV time and I went to bed very early.

Then I woke up today ultra early:  2 a.m.  which happens a lot because my mind spins with concerns and uncertainties.  I did get a small nap in later in the early morning hours.  We started our day around 8 a.m.

First thing Mom said this morning when she came downstairs was, “You know, I think I’m going to have to sell the house.”

“Why?”

“Because we don’t have much money.”

O.N.C.E.  A.G.A.I.N. I explained the different bank books and assured her that she did not need to sell the house or get a job.  She and Dad are okay financially.

It’s interesting that the money issue never seems to take hold in her brain.  She was always given a $20 per week allowance and Dad took care of all the money matters.  She’s still living on $20 a week, and she resents that Dad has not given her an allowance “for a very, very long time.”

Before visiting Dad today, we went to the bank and withdrew some money so she could feel more comfortable knowing she has some cash.  She doesn’t keep much in her purse, but feels secure if she has a bit of a stash in a drawer…until she forgets about the stash and claims she has no money.

After visiting Dad she said, “I think we need to stop at the bank so I can get some money.”

“We went this morning, Mom.”

“We did?”

We made a pit stop at Wal Mart and upon returning home she said, “We should go to the bank to get some money.”

“We went this morning, Mom.”

“We did?  I don’t remember.”

The whole day was perfectly fine except for her confusion with bank accounts and the inability to remember that we went to the bank this morning.  We shopped, joked, visited Dad, made an early dinner…no problems.  Occasionally she would make a reference to Dad coming to the house…plus she also thinks people like my Dad are having sex in nursing homes.  I let that comment pass…not even a nod from me.  I change the subject.

Late this afternoon she asked me to check the thermostat to make sure it was set for 75.  That’s cooler than usual for her; it’s usually 77.  When I checked the thermostat, I saw that she had turned the system off.  She moved the wrong button, and I showed her how to change the temperature.  I’m not sure she’ll remember, but I did try to be kind of dramatic when I said, “So…you certainly don’t want to turn the heat off in winter.”

“No, I don’t,” she said firmly.

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Parental Journal 32 from Planet Elderly -Driving Up For Christmas Visit Tomorrow

Sunday, Dec. 13, 2015 afternoon

Call from Mom. She was cheerful and wanted to tell me that Dad asked about me today. They had a good lunch, and she just wanted me to know that sometimes he remembers.

Monday, Dec. 14, 2015 8:30 a.m.

Call from Mom. She was very upset: has no money, can’t find bank books, convinced Dad comes over and steals money.

Instead of reminding her that Dad can’t walk or drive, I reminded her that just a couple days ago she could not find the three bank books, but then she did find them in a garment bag.

“Oh. Hold on,” she said.

She found two and was relieved to know she has some money to buy food. Then she talked about feeling like taking all the money and moving away. “I need to start taking care of myself,” she said. “I need to see an eye doctor. Don’t be surprised if I sell the house. It’s a nice place, but it has too many bad memories for me.”

I asked her if she could wait until I get there Sunday and not go anywhere right now.

“Well, I guess I can do that.”

Monday, Dec. 14, 2015 11:45 a.m.

While doing research online, I received a call back from the Neuroscience unit of Condell. The lady I spoke with gave me the names of two neurologists who might be of assistance.

Knowing Mom’s appointment with Dr. D. is tomorrow; I called Jose and gave him the name and number of the doctor I would like Mom to see. Jose said he would give Dr. D the message, but that Dr. D tried to get her to see someone else after her last visit and she refused. “We can’t force a person to go to a doctor, but I will give Dr. D this information. I stressed to Jose that Mom is a danger to herself and others, especially since she is still driving. I also acknowledged that all the doctor can do is refer, and if she says no, that’s her right. I thanked him.

Will go back to the Alzheimer’s Organization discussion board to see what advice folks can give or what options I have. I think I remember reading about similar situations before, and in the end, it was pointed out that eventually one stands back and watches a train wreck.

Saturday, December 19, 2015 9 p.m.

Sneaky Mom. She went to her appointment without Kevin. He called to let me know. That means she drove there and home without a problem…unless she got lost a bit going to or from Dr. D’s office.

I have felt more down than usual this past week. I worry about what we are going to do as things get worse. Maybe that’s the problem. Stop worrying about that and just focus on what’s going on now.

Because of my down mood and feeling near tears most of the time, I did call the Alzheimer’s toll-free hot line number and was referred to a counselor. It was helpful to talk with someone and explain our family’s situation and my feelings. I was told that I was doing exactly what I should be as someone who lives 400 miles away. Because my mom is functioning fairly well with daily living, there is no emergency…just the lingering anxiousness.

Suggestions, when I think they might be useful: 1) call the Dept. of Motor Vehicles, but they will need verification from a doctor, lawyer, or law enforcement officer that she should not be driving. 2) call the police department, and 3) call the area agency on aging.

I did call the police department and spoke with a lady who was rather rude. According to her, “If she passed the driver’s test, then she has the right to drive.” Sure. But if I won’t ride as a passenger with her and if neighbor, Kevin, won’t…what should be done?

Turns out they made a wellness call and did not say who referred her. Kevin said she was pissed big time.

Have had two recent phone calls with her and they were fine. We chatted about everyday things. It was nice.

While researching dementia recently, I looked at recommended videos on YouTube by Teepa Snow, an expert in dementia who trains caregivers and professionals. Very, very helpful. She’s an excellent trainer and has tons of energy. I highly recommend starting with “What Is Dementia?”

I’ll leave early tomorrow morning for my Christmas visit. If things continue to be fairly stable, I’ll return to MO in about a week. But I need to do some planning: how to talk Mom into changing doctors. I think it would be best to switch to someone who has a specialty in geriatrics.

Another goal is to see if there’s any way I can encourage Mom to think about the possibility of her and Dad moving down to MO. That will be a continuing endeavor for each visit. It will probably never happen, but I need to keep trying to point out the benefits.

I think this Christmas visit will be an emotional roller coaster.

I have two parents whose brains are dying.  That’s sad and I am actively grieving.

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Parental Journal 31 from Planet Elderly – More Difficult Phone Calls

Wednesday, Dec. 9, 2015 early afternoon

Mom called at 6:15 a.m. today to tell me Dad has been coming to the house and taking his things out. “It’s over,” she said. Instead of reminding her that he lives in a nursing facility, I just reflected her thoughts and feelings…kind of wondering where she would go with this.

She believes he’s leaving her and she is planning to take the rest of his stuff over to where he is. She’s done, too. She wants nothing more to do with him. She’ll get a job…likes where she lives now…worried about if she can’t drive anymore…will have to live very simply and not spend much money even if she gets a job. There’s not much money left.

Then she apologized for calling so early and burdening me with her problems. We ended the conversation and I sat there kind of stunned.

Mom called back 30 minutes later asking about bank accounts. She wants to make sure she has what money is coming to her and said I’m to keep paying dad’s expenses from the money market account we set up for him…and I’m also to manage the checking account that pays for regular monthly bills, most of which are on auto pay. I said, “Okay.”

About three hours later, Mom’s neighbor, Kevin, called. “We have to talk,” he said. He’s been watching out for my folks for years and views them like grandparents. He’s also helped them with house matters, transportation matters, etc. He keeps an eye on Mom to make sure she is safe, eats, and takes her medicine. All this is done out of close neighborly concern.

So Kevin and I talked for quite a while, sharing observations and concerns. We are on the same page. His main reason for calling today was to report that Mom has gone over the edge. Apparently she packed up bags of Dad’s stuff from his dresser, put them in the car, and took them over. She was very angry.

Kevin reported that Mom repeatedly misplaces her keys, uses remote devices to try to make a phone call, claims she has no money, claims someone is coming into the house, believes Dad is having affairs…has trouble using the TV remote…has sometimes left the burner on in the house…etc. etc. etc.

We developed a first plan. 1) I would call her doctor’s office, tell Jose what’s been going on and ask him to inform the doctor. I would also request a referral to someone who will do an assessment of Mom’s confusion, anxiousness, and forgetfulness. I did that and reminded Jose that Mom is scheduled for a visit on Dec. 15. 2) Kevin will be taking another person to visit Mom’s doctor, and during that visit he will also speak to Jose and express concerns “as her neighbor.” 3) Kevin will also take Mom to her appointment on the 15th.

It was good to have such an open and frank conversation with Kevin. I feel like I know have some leverage, and since he lives right next door, he is keenly aware of how she thinks and behaves. He has voluntarily taken the brunt of assisting with recent crises in the past few years.

I’m hoping that we can get a referral and move toward getting a diagnosis concerning Mom’s confusion, memory loss, and anxiety. I believe it’s related to dementia, but it’s also quite possible that some medicine would greatly enhance her quality of life. I cannot direct and manage things for both my folks unless at least one doctor deems her unfit to manage her affairs.

Since Mom and Dad both seem to be in fairly good health overall, I still hold on to the idea of moving them both to Columbia where we can manage this phase of our lives better. That may prove to be quite difficult…but not impossible. Tomorrow I will make an appointment for an informational visit and tour of an appropriate community here in Columbia: Lenoir Woods. They have everything from single homes to full-blown Alzheimer’s skilled nursing care.

Saturday, December 12, 2015 2:40 a.m.

Mom called me at 1:50 a.m. “I was just thinking about something. Never mind. Bye.”

So, of course, I’m up and can’t sleep now. Made some coffee and decided to write for a bit. I’ll nap/sleep later.

Thing is…Mom called me Friday afternoon (yesterday) and announced, “The check books are gone. Someone has been in the house and taken them.” So I calmly asked if they were in the bottom left drawer or the upper right drawer of her dresser. She went to look and returned a few minutes later to confirm that they were gone.

“Well, how about your purse? Sometimes you put your checkbook in your purse.”

“Hold on,” she replied. I waited a few more minutes and she came back on the line and said they were in a garment bag.

“A garment bag? Why?”

“Because I’m scared to death someone’s going to come in and kill me. Somebody has a key.”

“Mom, the only other people with a key are me and Kevin.”

“Yeah, well there is someone else.”

“Who?”

“Dad.”

I should not have tried to explain, but I couldn’t help myself. “Mom, Dad does not have a key. He’s at Victory Lakes and he doesn’t drive.”

Then she blew up. “Oh yes he does. You don’t know. You don’t believe me. YOU THINK HE IS GOD! THAT’S IT!!” And she hung up.

My reaction was immediate and physical: blood pressure up and teary eyed. The more difficult times have arrived, and I wrestled with the idea of going up there before my scheduled departure next Saturday. That’s a possibility. I called Kevin and left a message on his phone telling him what had just transpired on the phone. I didn’t ask him to call back and he did not call back. He has voluntarily watched out for Mom and Dad for several years…and has been there in the middle of the worst of times, but I would not be surprised if he just decided, “I’m done.”

Then, again, maybe I’m just projecting my own feelings. Will spend the day doing some planning and researching how other “long distance” children deal with elderly parents who live far away. This is all so sad and complex.

SIDE NOTE: My visit to Lenoir Woods was wonderful. I spent an hour with the coordinator of social services and explained my situation. From her point of view Dr. D. is being negligent in not acting on my requests to have Mom referred for an assessment, and she said, “Your parents need to be where you live.” That would be wonderful…to be able to move them both to Columbia. Lenoir Woods has several levels of care…from patio homes to skilled nursing. My Dad would be quite content in the skilled nursing building. The independent living apartments and assisted living apartments are wonderful, plus new independent apartments will be built in the next year and a new skilled nursing facility in two years. Even in its current state, it’s clean comfortable and lovely…much nicer than Victory Lakes.

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Parental Journal 30 from Planet Elderly – Long-distance Emotional Up’s and Down’s

Dec. 1, 2015 – evening

I called Mom at 5:55 p.m. just to check in. No answer. I called again at 6:15 and she answered. I think she was probably napping earlier because when she answered she said she was going to get dressed for her doctor’s appointment. So I mentioned that it was 6:15 at night…not morning.

“Well, it’s so dark outside,” she said. “That’s because it’s night time, Mom. See, you have the whole evening to relax.”

The appointment she thinks she has with her female doctor, Dr. S., isn’t until January. Mom thinks it’s sooner, even though the date and time are written on the calendar. She doesn’t have any appointment until Dec. 15 and that’s with Dr. D…who has never responded to my confidential written requests to have Mom referred for a cognitive assessment.

Dec. 2, 2015 – evening

I slumped into a major depressive mode today. I feel as though I’m trying to trudge through wet cement and getting nowhere. It’s difficult being 400 miles from my folks. At least Dad is safe and doing ok in the facility. Mom does okay with her everyday routine, but she is also unraveling with confusion when it comes to days, appointments, banks, etc.

All of this could be much more manageable if they lived closer to me.
One could also say, it might be better if I moved closer to them, but I cannot live with her. I also cannot afford rent in that area…plus being there would mean being far away from friends and family and the life/identity I have here in MO.

Admittedly, I struggle with guilt…anger…depression…resentment. I look too deeply into my relationship with my Mom…memories from the past…incidents of the present. I very much envy people who have close and loving relationships with their parents. I never had that.

I am so sorry that the wounds from her own childhood still haunt her. In her mind, nobody loves her, she has to figure out what to do by herself, and no one is to be trusted.

Every time my cell phone rings, I have an adverse physical reaction. I expect it to be Mom with some confused idea I’ll need to re-explain—again and again and again. But I’m all she has besides Dad…so that’s what I do.

Maybe we’ll see some sunshine tomorrow and I can refrain from taking refuge in bed all day.

Dec. 3, 2015 – noon

Mom left a voice mail message: “We don’t have any money at Merit Bank. It’s all gone.” I called her back and reminded her that we closed the account at Merit Bank in March because it was too confusing to deal with three banks. We took those funds and opened a money market account at First Midwest and we use that to pay for Dad’s care.

“My mind isn’t working right. I don’t remember things from March.”
I assured her that if she needs to cash a check, she can to go First Midwest Bank or Bank of America. They know her there and she has accounts with each.

I’m not sure she’ll remember…because last month she went to First Merit and opened up a new checking account because she needed to cash a check. There is no money in that account…so we should probably close it officially. For some reason her mind remembers that bank more than the others we’ve been using regularly.

I encouraged her to write a note to herself with the names of the two banks she should go to in order to cash a check…and to put it on the refrigerator.

Dec 5, 2015 evening

Mom called to announce, as she has done before, that she wants to have her own checking account. And as I have done many times before, I told her she has one that is just for her.

“Well, where is it?” she demanded.

“Usually you put the bank books in the lower left drawer of your dresser,” I reminded her.

“Just a minute,” she said. I could hear her rummaging around. “Well, it’s not there. Nobody believes me, but someone does come in and move things around.”

“Try the upper right drawer, Mom,” I suggested. Sometimes you put things there.

“Nope. Not there.”

“Well, it has a gray cover and a note taped on it: Mom’s Checking.”

“I know. I know. Gray cover.”

“What about your purse, Mom? Maybe it’s in there.”

“No it’s not.” Then she took everything out of the purse and found it. “Oh. Here it is.”

She stayed on the line and talked about how unhappy she is…how she doesn’t know how long she can keep this up…driving every day to see Dad. During today’s visit he didn’t even speak to her.

I tried to acknowledge her feelings and also mentioned that it’s ok to take a day off now and then…to stay home and do what she wants to do.

“Well, I might do just that. I’m tired of sitting around looking at these four walls. Maybe I should sell the place. I don’t know what to do. I have to figure out what to do. All I do is feeling like a slave – go there, pick up his dirty clothes, wash and iron them, bring them back. And he hasn’t given me a Christmas present in years…even when he was home.”

The conversation went on like that. She feels unappreciated, but on one level she does understand that he cannot remember to say thank you or to buy her a card or a gift.

“At least he still knows who I am,” she said. 20150623_114144

Yes, he does.

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