Parental Journal 69 from Planet Elderly – Second Attempt to Pass the Driving Test

Thursday, July 7, 2016 – late morning

As I type, I’m waiting for Mom and Kevin to return from her second attempt to pass the driving test.  I’m nervous.

She and Kevin attempted to do this yesterday, but the line was so long they turned around and came home.  Kevin told her they would go this morning around 9:30.

Today she woke up at 6 a.m., got dressed and said Kevin called to go take the test.

“I didn’t hear the phone ring,” I replied. “Are you sure you weren’t dreaming?”

“Well, he did.”

“You’re going at 6 a.m.?  They don’t open until 8.”

“Kevin’s going to take me out to practice first.”

“Oh…okay.”

She had her story and was sticking to it.  I didn’t argue.  She called Kevin and said, “Kevin.  This is Pearl.  I’m up.”  Then she waited.

After a half hour she went next door to see if his door was open.  It wasn’t.  She sat down to wait.

I’d been up since 4:30 a.m., so I decided to take a little nap. After sleeping for about an hour, I came downstairs.  Mom was sitting in a chair…still waiting.

“Maybe it was a dream,” she said.

I cut up some cantaloupe and we snacked.  She was puzzled.  She was also wearing her reading glasses.  Although she has new glasses for driving, she’s gets them mixed up and has to keep asking me, “Are these the right glasses?”  There are pre-cataract surgery and post-cataract surgery glasses scattered about.  Why isn’t there a rule that if you can’t figure out what glasses to wear, you can’t drive?

It was still early and I did not feel rested, so I went upstairs again.  I fell asleep and had a nightmare that woke me up:  Mom and Dad were both driving different cars and meeting somewhere.  I couldn’t believe Dad was allowed to drive with his advanced state of dementia.  Then somehow I was following him as he drove…and it was more like he was “driving” a bicycle…but then he stopped, stood up, and was fiddling with his pants, trying to take them off.  I held on to him and tried to keep his pants up while waiting for Mom to drive by and pick us up, but worried that because of her confusion issues, she would not find us.

Relieved to be just dreaming, I went downstairs.  Mom was still sitting in a chair waiting for Kevin to take her to the testing site.

“I don’t think he wants to take me.  I want you to take me.”

“OK…but I don’t do practice sessions.  I’ll be glad to drive you there and you can take the test.  Just give me five minutes to put myself together.”

I got ready and started walking downstairs when Mom called out, “Jeanette.  Kevin’s here.”  And off they went.

Early Evening

Results:  Failed second attempt.  She was perplexed.  “I thought I did just fine.  I did what she told me to do.”

She wants to do her third attempt tomorrow.  If the weather cooperates, I’ll take her.

We’ve talked about not being able to take the test for a year if she is unable to pass it after three tries.  Her response: “Well, I bet there are lots of people who drive when they’re not supposed to.  I only drive to a few places.”

I sighed…and kept my mouth shut.    Lots to think about and plan for in the event that she is unable to drive.  Things are going to get unpleasant…if not downright ugly.   Just a hunch.

For now… she’s relaxed in front of the TV watching “Alice in Wonderland” on AMC.

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Parental Journal 68 from Planet Elderly – Mom’s Date with Tarzan

Thursday, July 7, 2016 – early morning

Sometimes there are bonus days, and yesterday was one.

Dad was quite groggy and unresponsive during our morning and midday visits.  By 4 p.m. we were sitting in the living room.  Mom was watching reruns of “Gun Smoke” because she somehow got to that channel and wasn’t able to change it, and I was reading online news wondering how we were going to make it to bedtime without her getting too deep into obsessional thoughts about one of her favorite worries.

“You sleeping?” I asked.

“No.  Just sitting here.”

“How about we go check in on Dad and then go see ‘Tarzan?’  There’s a 6:40 showing.”

“Fine,” she said, delighted to go see Dad for a third time and get out of the house.  “I’ll go change.”  She was dressed in pajama bottoms from a new pair I bought for her and an old red housecleaning shirt.  Five minutes later she was ready to go.

When we arrived, Dad was chowing down in slow motion with eyes mostly closed, enjoying a chicken salad sandwich on a croissant and coleslaw.  He was eating with a fork, so I cut the sandwich into smaller bites.  Main meals are at noon; dinners are lighter fare.  He polished the plate…the first time in forever…and ate the piece of cake as well.  We weren’t too surprised.  He didn’t eat a bite during lunch, and dinner just happened to have food that woke up his taste buds.  Mom beamed and told him how proud she was of him.

Mom and Dad 01 July 6 2016

On to Meet Tarzan

As we walked to the car after vising Dad, I said we had plenty of time to get there and cautioned Mom that even at the appointed time for the movie to start, we would probably see several previews.

“What do you mean?” she asked.

“Oh…it’s always that way.  We go to movie theaters; we have to sit through previews.”

“Movie theater?  I thought we were watching the movie on TV and had to get back home.”

“Nope.  You haven’t been out to see a movie in over 25 years.  It’ll be different, but I think you’ll enjoy it.  Dad had a good dinner and you were happy.  Now it’s your turn.”

“We’re going to a show?  I’m going to a show??  I haven’t been to a show in ages.”  (“Show” is the word we use to use in the sixties when we went to the movies…as in “Let’s go to the show” or “Let’s see a show.”  At least that’s how it was in the Chicago suburbs at the time.)

As we drove to movie, I told Mom that movies are loud these days…sometimes really loud…plus there is much more violence in many  of them.  “Oh…I don’t like that,” she said.

“Well, ‘Tarzan’ received some good reviews so overall I think you’ll like the story line…plus, now they use computers a lot in film making.  The animals we see will be computer generated and they will look awesome.”

We sat through eight previews, each one ridiculously violent with fighting, buildings collapsing, horrid ghosts wreaking havoc to challenge a new team of ghost busters, cars flying about, bridges crumbling, and huge space ships invading earth.  I glanced at Mom.  She looked worried.

And then we saw “Tarzan.”  Mom was wide-eyed and transfixed.  She loved the animals, frowned with support for the enslaved natives, glared back at gorilla challenges, guessed a couple of plot developments, and thoroughly enjoyed the experience.  As we left, she kept saying, “I can’t believe I went to a show.  That was good.  I really enjoyed it.”

Mom and Tarzan July 6 2016

I enjoyed it, too…a Tarzan movie enhanced with character and plot development, tons of gorgeous scenery, and lots of computer generated action and animals.  (I loved the scene with the elephants.  I sort of teared up a bit.)  It was a fun adventure movie and I’m glad Mom enjoyed herself.

Maybe I can introduce her to Dory next.

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Parental Journal 67 from Planet Elderly – Driving Test: One Attempt Down, Two to Go

Tuesday, July 5, 2016 – evening

Mom failed the driving test today.  (Yea!)   She plans to return tomorrow to retake it. (Groan)

We visited Dad in the morning and had an 11:30 a.m. appointment to pick up her new driving glasses plus get the required vision form filled out.  Then Kevin took Mom out for some practice time.

I don’t get in the passenger seat with her – ever.  Kevin can be more neutral.  He’s sort of the good cop to my bad cop when it comes to monitoring and assisting Mom.

After her practice time, we drove to the Liberyville motor vehicle location.  It’s located in a strip mall on Peterson Avenue.  After Mom checked in, she was told to drive the car around to the back of the building for her driving test.  I walked her to the car and reminded her what direction to go in order to drive to the back of the building.

She drove the opposite way and exited the strip mall vicinity. Off she went on Peterson Avenue. She was confused, and I’m sure she was nervous.  There wasn’t much for me to do except wait for her to realize she had driven away from the testing location, turn around and find her way back.   While I scanned every car that drove in and out of the parking lot, I called Kevin and told him what was going on.  After about ten minutes, I saw Mom slowly drive back to the parking lot, get out of the car and start looking for me.

I waved so she could see me and walked over to her.  I didn’t shout or say anything except, “You drive down that lane, Mom, and then turn left to go behind the building.”  Off she went and I waited inside where it was air-conditioned.

It took a while before I saw Mom driving her car out onto Peterson Avenue to take her test.  A bit later I heard sirens…then saw an ambulance…a fire truck…then another fire truck.  I started wondering how the testers felt about putting their lives into other people’s hands several times each day.  Then I wondered if any tester was ever killed or severely injured during a driving test.  Then I told myself, “Stop it!”

Finally I saw Mom’s car returning to the parking lot.  On her way to the parking space for returning testers, she bumped into a curb.  Seemed she was a little unsure of maneuvering, plus there were several other cars coming and going.  Once parked, she and the tester talked a while. With so much talking, I assumed she failed.  She did, but had only two areas of concern.  First, by hitting the curb, it was an automatic fail.  Second, she needs to come to complete stops.  Otherwise, “You did fine, Pearl,” the tester said.

When we got home, Kevin came over to learn the results.  Good sport that he is, he said tomorrow he would take her out again for more testing practice and then to take her test.  She is eager to take it again and thinks she’ll have better luck tomorrow.

So tomorrow it is.  Attempt number two.   She’ll get three chances and if she doesn’t make it, she has to wait a year. We’re also scheduled for rain/thunderstorms tomorrow, so that may delay things.

After dinner we visited Dad.  He gave me a big smile and a loud “Hi” when I greeted him.  When he saw Mom, he looked at her and shouted, “OH MY GOD!”  Then he said, “Here’s my girl” and Mom looked like she had fallen in love all over again.  It was just what she needed. Mom and Dad July 5 2016 01

After so many days of watching him sleep, eat very little and be quite unresponsive, we hit gold.    Okay…so maybe he was in a bit of sundown syndrome time, but his eyes were open, he talked about needing to find the car and go home and then he decided he would try to get out of his chair.

That was time for us to leave and let staff take over.  I bent over to make sure he heard me and I said, “We’ll be back later, Dad,” and he said, “Okay.”

Dad’s Sleepy 94th Birthday

Sadly, Mom had expectations for Dad’s birthday July 1st.   He didn’t really understand what was going on and it was difficult for him to stay awake.  She had to assist him with unwrapping a shirt she bought for him.  He didn’t say anything about the shirt.  The same with birthday cards.

Some staff members came in with a gift of a handmade quilt and then we sang “Happy Birthday.”  I broke down a bit.  Could not finish the song.  Grief touched my soul for a bit and I wondered if this was the last birthday we would celebrate.

Then the Beyer family showed up with a card and a balloon.  Raymond is Dad’s former roommate.  Betty is his wife and resides in the independent living part of the Victory Lakes community.  Their daughter, Judy, assists her parents and has become a good friend to Mom and me.  With the Beyer family present, Dad opened his eyes enough for me to get a couple photos.

Dad birthday 2016 02

Dad birthday 2016 01

We returned in the afternoon with cake.  Dad was still quite sleepy and refused to eat a piece of cake.  Mom kind of lost it.  She thought he didn’t appreciate anything done for his birthday.  I tried to gently remind her that most likely, nothing about a birthday registered for him that day.  She was in her angry zone and claimed that he could have at least tried.  It was not a pleasant visit…but Dad was in dreamland and wasn’t concerned one bit, so we packed up leftover cake and drove home.

“This was not the kind of day I wanted it to be,” Mom said.

I kept my mouth shut.

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Parental Journal 66 from Planet Elderly – Driver’s License Outcome Delayed, Physician Fired, Birthday Preparations

Wednesday, June 29, 2016 – Evening

Driver’s License Renewal Saga

Yesterday morning Mom was tired.  “We don’t have to do anything special today, do we?”

I reminded her of the driver’s exam.

“I don’t want to take it today.”

G.R.O.A.N. but then I managed to calmly say, “Oh well…yesterday you wanted to get it over with.”

She stormed out of the room saying, “Oh…alright!  I’ll take the damn test.  I’m fed up with all this shit.”   (Ah…she’s adopting one of my favorite words.)

We got to the testing site around 9 a.m. and because of her age, she was given a special number to ensure she would be served within a few minutes.

She was…and as she settled herself up to the counter I stood behind her, made eye contact with the clerk, lifted a little sign I made and received a nod of acknowledgement from the clerk.       “Dementia:  Short-Term Memory Problems.”

I felt like a traitor, but the last time she renewed her license she was asked if she had any problems with her vision, any problems with getting lost or being confused or had any serious medical conditions.  She denied any problems.  This year, I wanted the clerk to know she has a diagnosis.  Some people with dementia drive just fine, and if she tests well, okay…but there are cognitive impairments.  I’m just hoping the drivers’ license office can be the boogie man and stop her from driving.

Mom failed the vision screening when she tried to renew her driver’s license.  She was told to get a complete eye exam, have the doctor complete a form and then come back.  I thought…okay…this could be easy.  She won’t get her license because she won’t pass the vision exam.

She had her eyes tested today.  She passed.  She will need glasses for driving.  Her vision after cataract surgeries is fine for everyday living, but the driving glasses are supposed to ensure that her vision meets Illinois requirements for safe driving.  Doctor said she did okay on the peripheral vision assessment, which is what she messed up when she was given the vision screening.

We paid a bit over $400 for the comprehensive exam and a new pair of glasses. (Such a rip off.  I buy my glasses online for a fraction of that cost.)  Once she gets those fitted, then she will have to pass the driving test.  So she’s halfway to obtaining a license renewal for the next year…and she is delighted.  I’m not thrilled, but I am grateful to learn that overall her vision is pretty good.

No  resolution yet about the driver’s license issue.  We’ll have to wait until she gets her glasses before she can take the driving test. Hopefully that will be next week.

Late this afternoon, we took a walk around the Grayslake Farmers’ Market…a little something different for a change.

Mom farmers' market June 28 2016

She Fired Her New Primary Care Physician

When Kevin visited with us the other day, he mentioned that Mom is back with Dr. Dalloul.  Bottom line:  She has the right to choose her primary care physician.

Other bottom line:  I was pissed.

Mom wanted a female doctor who specialized in older patients.  I wanted the same, plus one who would follow through on a request to refer Mom for a cognitive assessment.  Dr. Gupta did all of that and was terrific, as was her staff.  But once Mom went through the neuropsych testing and was told the results, she tucked it all away and decided she liked Dr. Dalloul better.  He is a kidney specialist.  I’m not sure of his expertise with patients who have short-term memory loss, delusions and confusion.  Plus, I do not trust that he will even review any medical records he receives from Dr. Gupta.  I will need to make sure he receives copy of Mom’s neuropsych report.

I need to let go of the anger and frustration just because she went back to the doctor she didn’t like in the first place.  It’s her choice and I have to live with it.  I will need to make sure there is a HIPPA form on file so that Dr. D and I can communicate openly.

 

Birthday Preparation and Delusional Thoughts

Dad turns 94 on Friday.  We went to Jewel, ordered a cake and picked up paper plates, candles and napkins.  As we left the store, Mom said, “I don’t think I’m going to enjoy his birthday.”

“Why?  What do you mean?” I asked.

“Well, he doesn’t remember my birthday or our anniversary.  I haven’t received a Christmas present in years.  It’s always all about him.  He never thinks of me.  He hasn’t given me my allowance in years!”

I should have kept my mouth shut…but I didn’t.  I have listened to her he-doesn’t-remember monologue so many times and I snapped.

“He doesn’t remember, Mom….because he CAN’T!”

That started us on bit of an argument which eventually moved into a fairly coherent and meaningful discussion by the time we got home.  She said she needed to let go of Dad and find more time for herself.

“I know this is all so difficult,” I said, “but I don’t think you need to let go of Dad.  I think it would be nice if you could get to a point of accepting Dad for who he is now, rather than being angry and upset so much because things aren’t like they were years ago.”

And then she just opened up…about wanting to make sure Dad remembers her… not knowing how much time she has to live… making sure he is not in pain…unsure of whether to move or not…mourning that he cannot be at home with her to take care of him…sorry that I have to be bothered with all this.  “Tons of families are dealing with the same thing, Mom.  It’s not a bother.  There’s just the two of us and Kevin.  We’re a team, remember?”

We talked quite openly about grief and that fact that she has been grieving intensely ever since he went to the hospital in February of 2015…how difficult it is to watch someone fade away before you…living with guilt and frustration.

“I’ll try to be better.  I’ll try to remember that he isn’t the person he was.  I’m just so worried and sad all the time and I don’t know what to do.”  She sighed deeply, wiped tears from her eyes and blew her nose.  “Maybe I just need to get a part-time job…something to take my mind off things.”

I kept my mouth shut.

Thursday, June 30, 2016 – evening

During this visit, it is clear that Dad is declining.  He was totally asleep and unresponsive when we went to see him this morning.  They must have had to give him medicine to calm him down…either that, or he had an extremely restless night.  This afternoon he was awake, smiled when he saw us, and tried to talk a bit…things like, “It’s okay”  or  “Just do your best.”  or  “I’m not sure if I’m done.”

He is eating less and seems less alert to what is happening around him.  He doesn’t know me…but he occasionally smiles at me when I put myself within his field of vision.  He remembers Mom, but we don’t hear him use her name anymore.  I know she feels him slipping away and her heart is breaking.

Mom Dad June 30 2016 01

 

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Parental Journal 65 from Planet Elderly- This Visit Starts with a Roller Coaster Ride

Monday, June 27, 2016 – evening

Not a Quiet Drive Up Yesterday

Phone Call #1:  The drive up went well for the most part; however, I received a call from Mom around 9:30 a.m.  “Where are you?  I thought you were coming up today.”

“I’m on my way now, Mom.  It’s an eight hour drive, so I’ll see you later this afternoon.”

“Oh.”

Phone Call #2:  Three-quarters of the way up I received a call from the nurse on Dad’s wing.  She needed to report that Mom had been there and was involved in an incident:  Mom was angry at Dad, slapped his arm and also his leg, accused him of taking her money, and was crying.  The nurse said she had to report the incident, but that she was concerned about Mom because as she left she said, “If I’m killed in a wreck, it’s Victor’s fault!”

Phone Call #3:   Received a call from the administrator.  She confirmed that she received the report of Dad being slapped and we agreed to meet Monday at 10:15.

Phone Call #4:   Received another call from the administrator.  Mom returned in the afternoon and staff was trying to keep her there for a while.  She was upset and they didn’t want her driving when she was upset.  I was just arriving in Grayslake, so I agreed to go directly to Victory Lakes, pick Mom up and bring her home.

Phone Call #5:  Five minutes later, another phone call from the administrator.  Mom refused to stay and was headed home.

I turned around, drove to Mom’s townhouse community, and her car was in the driveway.

After unloading my car, Mom and I relaxed and visited.  I decided to gently mention the phone calls in a calm and understanding voice.  I did pretty well.  Mom seemed surprised and was convinced “it was all a misunderstanding.”  I told her we had to meet with the administrator Monday morning and she was fine with that.

Overall, she stayed calm, but she was clearly upset and a bit defensive.  “Okay then.  I just can’t touch him.  I can’t say anything.  I won’t speak to those people anymore.”

We had a light dinner of burgers and veggies.  She cooked.  I was cautious, especially when she said we would each have 1 ½ burgers.  She was cooking two fresh burgers from the meat department and one of unknown age.  I wondered if we could both die of eating hamburger meat that was too old and not properly stored in the refrigerator, but by the time she cooked the hell out it, I figured anything dangerous was killed off with the extended cooking time.  (It’s the next day and we’re both alive and arguing.)

After dinner we took a quick ride to see Dad.  She was so grateful.  He was agitated and was holding his shoes.  He had an undershirt on but not a shirt.  I told him he looked like he’d been partying.  He couldn’t hear me, but he looked like he was struggling and we were told he was given some Ativan because he had been so agitated. He had been uncooperative taking his meds that day and reportedly told the nurse, “I don’t want that in my life anymore.”  They won’t force any medicine.  They will try another time.  I understand.

We didn’t stay long…not more than 20 minutes.  It was long enough for Mom to get her goodnight kiss, and that made her day.

We relaxed the rest of the evening.  I watched Masterpiece Theater and Mom napped in her chair.  Lights were out by 10:15 p.m.

 

Today:  A Roller Coaster of Emotions

We visited with Dad before our morning meeting.  Dad ate some of the watermelon I  brought, but he was groggy and mostly unresponsive.  It’s sad seeing him this way.

Dad June 27 2016

The meeting with the administrator and the director of social services was conducted with care and understanding.  Mom was asked what happened yesterday and she didn’t remember much.

Things became more difficult when she was told she would have to have someone with her when she visited Dad.  She cried, tried to explain what happened yesterday, and became angry and defensive.

Mom was also told she should not be driving.  Staff members are concerned, especially when she is upset or angry and then gets into the car.   This didn’t go over well at all.  She stood her ground:  “I don’t drive much…just to the store and to see Victor,” and when the potential to hurt others in an accident was brought up, her response was “I’ve been fine.  I’ll be careful.”

We even talked about the possibility of Mom trying out staying in the community for a month or so to see what it’s like.  That way she could see Dad often and also have social outlets.  She said she’d give it some thought, but thoughts for her are fleeting…at least some are.  Other thoughts are obsessive delusions:  “Dad is taking all my money.”  “Dad wants a divorce.”  “Other women don’t like me because I’m his wife and he’s a good looking man.”

Overall, she was upset by the content of the meeting…and I understand.  She feels like everyone is always telling her what to do.  At one point in the meeting she became so upset she left, but then she returned.

After the meeting, we visited with Dad for a bit and Mom was quite tearful.   Even Dad noticed her red eyes, but he could not find words to comfort her.

On the way home, Mom became defensive and I made a big mistake – again.  I tried to explain why people are concerned about her driving…why they are concerned about Dad being slapped.  I should have just let her talk, but she asked and I tried to explain.

We ended up in an argument and then agreed to be quiet.  Once home, she went for a short walk and I checked email.  Mom decided she wanted to take her annual driver’s test tomorrow to prove she is fine driving, so we’ll be at the door with bells on by 8:00 a.m.

We were going to visit with neighbor assistant, Kevin, to bring him up to date, but when Mom went to find him she said he was not home.  Eventually she located Kevin and he came over to do a form of much needed family therapy – once again.   I told him what had been going on, and by the end of our time together, Mom was calmer and grateful to Kevin. “He’s so easy going,” she said.  He’s also not her child and I, too, am grateful for the leverage he can provide with difficult issues.

So.  Big day tomorrow.  Will Mom pass the driving test or not?  I’m hoping she doesn’t, because if she does, I have to continue to deal with the driving issue…and that’s only the tip of the impending iceberg.

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Parental Journal 64 from Planet Elderly – Packing for the Next Trip: Dad’s 94th Birthday

Saturday, June 25, 2016  evening

Tomorrow I head back up to Grayslake to spend some time with Mom and visit Dad.  This is expected to be a short visit.  Dad turns 94 July 1, so we’ll celebrate a bit with him and other “Sunshine Wing” residents.  Last year we ordered a cake and brought it after lunch so as not to ruin anyone’s lunch.

Ninety-four.  I tear up thinking about it.  Each time I visit him now I get a bit emotional.

Victor Anthony Leogrande became my stepdad when I was 7.  Thanks to him, my life turned out much better than it would have.  Thanks to him, I was able to go to college.  Plus I adored his parents and have wonderful memories of summers in Syracuse, weekends at the lake house by Oneida Lake, and tons of homemade Italian food.

So when I see Dad now, I am flooded with wonderful memories and a great deal of sadness to see his life as he lives it now.  I feel sad.  When I ask him how he feels, he often says, “Great!”  or  “Just fine!”   Must be nice to continually live in the moment.

Dad Jan 25 2016

Mom called this afternoon wondering if I was arriving today.  “I’m coming tomorrow, Mom.”  Then she sort of giggled…said she wasn’t sure if she saw Dad today, but if not, she was too tired to go visit him now.

She talked about not having any money and that she hadn’t been to the grocery store.  I told her not to worry; I was bringing some stuff and maybe we could go out for Chinese.  I also reminded her of the money situation she keeps forgetting.  Not much response.  She seems stuck in her younger years when she had so little.  She needs constant coaching to realize she has funds to buy what she needs.

Another complaint she had was getting “all this mail asking for money.”  She reads every piece of mail and often spends extra time on the ones appealing for money to help children.  “I just can’t afford to give to all of them.  Once in a while I do because I feel sorry for them.  But you know what?  Nobody helped me when I needed help and I didn’t have enough food for us.”

It’s a monologue I hear frequently.  I just listen.  It’s what’s on her mind, and once she winds down, I assure her that we all get that kind of mail.  There are lots of people and organizations in need.  She can donate or she can pitch it.  Most of the time she says, “I’ll shred it.  It has my address on it.”   She likes to shred.

Rain is expected tomorrow, so I’ll just take my time as usual and listen to some favorite CDs and NPR when I can pick it up.  Years ago I’d have to drive through deserts of country music and southern preachers, but nowadays, NPR is fairly easy to pick up most of the way.  Praise Jesus!

I’m just about all packed.  Will take the printer again.  Cantaloupes, a watermelon, green onions and celery that I don’t want to go bad in the fridge…some apples, creamer for my coffee…cheddar cheese and some crackers…cashews for on the road…wine for whenever.  Need to pick up some yogurt and hummus.

As we ended our phone call today, Mom kept saying, “Something doesn’t feel right.  I’m just so tired.  I don’t know what’s going to happen.”

I don’t know what’s going to happen either…except that we’ll hold tight to each fairly normal minute we have together…because the future, well, it’s going to get pretty darn messy.

Broken hearts make big messes.

20150816_092007

 

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Parental Journal 63 from Planet Elderly – Respite Time Back in Missouri for a Few Weeks

Saturday, June 4, 2016  mid-morning

Morning view back yard Concordia Dr. May 2016

This is the view I see each morning at my new rental place.   This is the view I need to see each morning.  I feel so fortunate to have Mom’s neighbor, Kevin, as part of our self-made care team.  With his assistance, I am able to continue my schedule of going up every 5 weeks or so and still come back to my regular life in Columbia.

Have had a few calls from Mom and made a few calls.  Highlights:

May 24 – “I thought you were coming up for Dad’s birthday.”

“It’s July first, Mom, not June first.  I’ll be up in late June.”

“Oh…okay.  There must be something wrong with this calendar.”

May 25 – “I thought you were coming up for Dad’s birthday.”

“It’s July first, Mom, not June first.  We talked about this yesterday…but that’s okay.  I’ll be up in late June.  Check the July calendar.  It should say “Dad 94 on July first.”

“Ok…oh…yes.  There it is.  Sorry to bother you.”

Shortly after I returned to MO – “I just want you to know Dad is leaving me.  He’s coming over with his girlfriend and told me to get his clothes.  I have them on the dining table.  I think they’re coming over later this morning, so I’ll just wait.  I just want you to know.”

This is a common delusional thought, and I’ve learned not to dispute it.  I said things like, “Oh….gee” while she gave me the news.  I ended with “I don’t know what to say,” and she stressed that she just called to let me know.

Of course, I get on the phone and call Kevin who goes over to say hi and check in on her.  He, too, did not dispute her claim.  Later that afternoon he went back to ask if anyone stopped by to get Victor’s clothes.  No.  Kevin told me he then told Mom that whenever he visits with Victor, Victor always said how much he loves Mom.  With that, Mom agreed to put the clothes away and go see Dad.

A few days ago – Call from Kevin saying Mom was not reacting well to beginning doses of generic Aricept.   “Don’t give it to her,” I said.  “There’s no guarantee that it will help…and even if it does, it will not help for more than a year or so.  She takes the blood pressure and cholesterol medicine…and that’s what is most important.”

Mom was miserable with nausea and dead tired when she started the new med right  before I returned to Missouri.  I mean miserable!  She’s almost 90.  It’s more important for her to feel physically well.  A secret dose of antidepressant I would love to sneak into her morning oatmeal…but the Aricept substitute isn’t worth the discomfort.

A couple days ago -“I need money to get the car fixed and I don’t have any money.”

“Sure you do, Mom.  Remember, you have the red box with some cash in it.  You also have a checking account book.  It has a note written on it:  ‘Mom’s checking.’”

“Well, where are they?”

“Wherever you put them.”

“Okay.  I’ll go look.”

She called back.  “Ok…I have the checkbook.  I’m so relieved.  You know, I don’t spend a lot of money.”

“No…I know you don’t, but I hope you know that if you need anything, you can buy it.  Kevin can help if you need to write a check.”

The car needs to be fixed because in driving it out of her tiny garage, she once again broke the side mirror off and apparently other glass was shattered.  Kevin discovered the glass in the morning when he went over to get her car out of the garage for her, but independent gal that she is, she had already left.  When she returned, Kevin took charge of the repair.  According to Mom, though, even Kevin has difficulty getting her car out of the garage.  “He almost did the same thing I did a couple times”   This was her 4th or 5th time, according to Kevin…only with more damage this time.

Late yesterday afternoon – I received a call from a lady filling in for the receptionist at Victory Lakes where Dad lives.  She told me Mom called and asked to speak with Victor.  Mom was told he was at dinner.  “She sounded kind of upset.  I guess she’s having a bad day.”  I thanked her for calling and promptly called Mom.

She answered the phone quickly and was crying.  The evening news was summarizing the day in the background.

“Hi, Mom.  Just called to say hello,” I said.  “I’m  having a plate of spaghetti now.”

“Oh…hi.”

“What’s wrong?”

“I’m okay,” she insisted, but eventually she opened up and talked about being so tired of “all this” … Dad doesn’t appreciate her visiting and doing his laundry every day…she has to figure out what to do but she likes her home…how bored she gets sometimes…all the topics we cover over and over and over as she rants and I listen.  Suggestions don’t go far.  She’ll either agree and forget, or she’ll dismiss a suggestion with a reminder that “I’m perfectly happy.”  But we chatted for almost an hour, I think, and I eventually got her to chuckle and laugh.  By the end of the conversation she was bragging that she was doing just fine and asked me if I was doing fine.  I said I’m enjoying my first ever adventure in living alone…and she joined in saying how much she enjoyed living alone, too.

I’m sure Mom enjoys times of just doing what she wants when she wants the way she wants.   We share that genetic trait.   That said, she misses Dad terribly.  They’ve been married 59 years…a second marriage for her and a good one.  She grieves continually.

+++++++++

And while she grieves, I have to get away.  Thanks to Kevin, I am able to do so.  I am able to return to Missouri to clear my mind, lower my blood pressure, spend time with family and friends, see movies at Ragtag, garden, listen to music I love, and feed birds.  I revel in the quiet.  I milk all I can out of my alone time, because I know things are going to get far, far worse.

A deep bow of gratitude to Kevin for the arrangement we have set up to help Mom live as independently as possible while I try to do the same.

Another deep bow of gratitude for all the folks who share their experiences with dementia/Alzheimer’s as caregivers, nurses, doctors, patients, and family members.  I don’t know about others, but I find myself almost obsessed with reading about this condition.  With morning coffee, I read message board discussions on the AgingCare.com and Alzheimer’s.org websites.  I listen carefully to NPR interviews.  With Mom’s recent diagnosis, I’m googling “vascular dementia” as I try to figure out what to expect.  Over a year ago, I inhaled The 36-Hour Day. More recently I’ve been immersed in Bettyville, the funny, tender, and honest memoir by George Hodgman.

If anyone has other books to recommend, please share.

As my generation ages, the population of “senile” folks is going to explode.  We better get prepared.  It’s gonna be a long, bumpy ride with terrifying highs and lows.  Just part of being human…for some of us.

And while I’ve been home a while recharging my battery, my grandson and I went on a nature walk recently at Pinnacles Youth Park a few miles north of Columbia.  Photos like these help me breathe and remind me to be present.

Creek at Pinnacles Youth Park Missouri May 2016

01 Pinnacles Youth Park Missouri May 2016

03 Pinnacles Youth Park Missouri May 2016

02 Pinnacles Youth Park Missouri May 2016

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Parental Journal 62 from Planet Elderly – Another “Dad Wants a Divorce” Delusional Episode

Monday, May 16, 2016  9:30 a.m.

Although it’s good to be back in Missouri, it’s also unsettling.  It’s difficult to adjust after a month at Mom’s and shadowing her schedule.

Arrived back on Saturday, called Mom to let her know I arrived, and had dinner at Bonnie’s.  Did not sleep well Saturday night.  Spent most of Sunday dozing in the recliner, tucked under a throw.  Ah…this is what depression looks like.  But by 1:45 I woke up and felt energized enough to go to the store and do a little gardening.  It was a beautiful day.

This morning Mom called a little after 7:00 a.m.  She wanted me to know that Dad was leaving her.  He said he would pick up his clothes sometime this morning, so she had them on the dining table.  He has another woman.  Just wanted me to know.  Bye.

It’s a delusional episode she has had before.  I didn’t dispute it.  Just empathized a bit…”I don’t know what to say…” that sort of thing.  Then I called Kevin and he said he would go over, check on things, and try to redirect.  He’s been through this before.  He’ll call me later.

My stomach is in a knot.  Chilly, rainy day outside.  Will call Dr. Sheila for some therapy sessions.

 

9:30 p.m.

Won’t be able to see Dr. Sheila until mid-June, but Kevin’s update later today was interesting.  Apparently Mom waited all day for Dad to come get his things.  Kevin let her live with her story for the day and kept an eye on her, but later he was able suggest that maybe what she thought was real was a dream.  He drove her to see Dad, and Kevin said he and Mom visited with Peggy, the social worker.

As of late this afternoon, Mom was once again considering the idea of trying out an apartment at Dad’s community…independent or assisted living…for a week or two.  She has said that before and within a few hours changed her mind.

We’ll see if there’s any real follow through.  It could be that with me out of the way, Mom might feel more like she is making decisions.  I think she’d like the trial stay because she could visit Dad anytime and she’d have social interactions.

I want her to be safe and I want her to be relatively content.  She is neither living alone.

 

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Parental Journal 61 from Planet Elderly – Heading Back to Missouri to Recharge

Friday, May 13, 2016  evening

Time to recharge.  The situation here is not ideal, but it is stable enough to let me go back to my regular life for a while.

Diagnosis of moderate dementia has been received.

Mom denies anything is wrong; she will not consider agency aides or assisted living.

Mom is starting some medicine her doctor prescribed – generic Aricept.  She has difficulty managing her meds.  When I caution about taking too much or too little, she just yells, “Then let me die.  I don’t want any help.”

After agreeing to have neighbor Kevin check in on her twice a day to make sure she does take her meds and to provide any other assistance as needed, Mom told him today that she did not need a babysitter.  She doesn’t want him coming over.

Kevin will ignore the babysitter remark and provide the assistance she, he, and I agreed on a couple days ago.

Mom is very eager to have me go away for a while.

I am very eager to go away for a while.

Remaining issue addressed today:  Mom’s ability to be a safe driver.

Today I sent a letter to Mom’s doctor requesting that she inform authorities of Mom’s diagnosis and recommend she be tested to assess her ability to be an aware and safe driver.  This is an Illinois requirement I learned from the Internet.  The neuropsychologist told me she was certain Mom would not be able to pass the test.  This will be difficult for Mom, but it needs to be done to avoid any possible danger to Mom and/or others.

A Deep Bow of Gratitude to Kevin

I would not be able to return to Missouri for a while if it weren’t for neighbor Kevin.  Yesterday he told me he knows how difficult things are and will be…but he said that being in my position as the only child daughter who lives 400 miles away…”that is a no win situation.”

It may be a no win situation, but it is a situation shared by thousands of other families.  My situation is a heck of a lot easier to deal with than that of others who must provide 24/7 care for a loved one for years with little or no assistance.

It may be a no win situation, but it is a situation that will have an ending.  In my case, two.  The days ahead will be filled with a bit of wonder, grief, frustration, and gratitude.

And heck, there’s no guarantee I’ll outlive them.  No guarantee whatsoever.

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Parental Journal 60 from Planet Elderly – Diagnosis Explained, Emotional Tornadoes, and Plans

Wednesday, May 11, 2016  afternoon

It’s mind boggling to think about all that has transpired over the past 48 hours or so, but at least things have leveled out a bit and the high drama and hysterics are on the back shelf…for now.

Monday we visited with the neuropsychologist; she went over the main points of Mom’s evaluation report.  Diagnosis:  moderate dementia with possibly Alzheimer’s.   None of what she said made any sense to Mom.  She only heard all the “you” statements, as in “You have difficulty with ….. and ….   You have a tendency to ….. and ….. etc.

Mom went on the immediate defensive and flatly stated that she intends to keep driving the little she does drive, she will not have strangers coming to the home to help her manage her medicine, and she will not leave her home and move to assisted living.

It was an extremely emotional visit and Mom became volatile.  Here’s what I remember about the next couple hours:

  1. Three times Mom tried to command me to leave the consultation.
  2. In front of the psychologist, she yelled at me and told me that as soon as we get home I should pack my bags and leave.  “You are dead to me!  You just want to put me in a nut house!”
  3. During the ride home, she continued to cry and yell…telling me that I was not going to move in with her (I agreed!!!!)…that she would not leave her home…that I was killing her…that she might as well kill herself because her life is over…then she reached for the car door but I had the lock on.
  4. She said that if I spoke to anyone about her, she would kill herself.
  5. She told me to forget about her. Just live my life.  Go away.  She never wanted to see me again.
  6. She continued to yell and I finally pulled over and told her to stop yelling or I would call 911. She then reached for the car keys and tried to take them out of the ignition.
  7. She settled down and we finished the ride home fairly quietly and agreed not to fight. As we approached her home, she apologized.

Neighbor Kevin came over at my invitation in the early evening.  I wanted a witness as I told Mom that I would need to occasionally talk to others because we needed a support system and help to look at options for the future.  She exploded, told Kevin to leave, and I went upstairs.  I was ready to pack up and go over to a motel for a few nights.  She continued to yell about killing herself, so I told her that if she mentioned killing herself one more time, I was going to call 911 and they would take her to a mental hospital for observation.

She shut up.

A few minutes later she had Kevin back in the house and wanted him to go over the report.  We sat in Mom’s bedroom and he reviewed some main points.  It was great to have Kevin as a third person…someone other than “the daughter.”   By 8 p.m., all was quiet and civil.

 

Yesterday (Tues.) Mom went to see Dad herself while I went to the library.  I had to make copies of some things and I wanted to check with the local police department about legal responsibility for Mom.  I was told that she is free to do as she pleases, even with a diagnosis of dementia.  That answered my question.  Obtaining legal guardianship is the only way to force an elder parent to move or to receive care he or she does not want. I hope to avoid having to obtain guardianship.  It takes months and is expensive.

Before going back to Mom’s yesterday morning, I stopped by Jewel for some comfort food.  I was quite anxious about going back to the house…not knowing what state of mind Mom would  be in.  Turned out she was calm, cheerful, and sweet as a lamb.  She loved the comfort food I brought home and we had a terrific rest of the day and a nice evening.

Follow up with Dr. Gupta

Today was our follow up visit with Dr. Gupta.  I wasn’t sure if she had received and/or read the evaluation report yet.  I felt happy that we were able to get an appointment so quickly.  She was WONDERFUL!  She asked Pearl what the meeting with the neuropsychologist was like.

“Ok,” Mom responded.

“What kind of tests did she do? Did she do any motor skills testing to look at balance and coordination…things like that?”

“I don’t know,” Mom said.

“That’s okay.  So what did she say during your evaluation visit?”

“Nothing, really.”

Dr. Gupta looked concerned, but didn’t press any further.

I told Dr. Gupta that we had a plan in place for a close neighbor to check in on Mom twice a day and provide assistance with medicine, driving, and anything else…that Mom did not want assistance from an agency and that she did not want to move to assisted living.

Mom agreed to take a new medication to slow down memory loss (a generic form of Aricept), and Dr. Gupta agreed to see “how things go for the next few months.”

From this visit, it is clear that Mom does not remember the diagnosis and what it means.  She continues to claim that nothing is wrong, but she’s will to take some additional medicine.  No MRI was recommended, so we don’t have to put Mom through that experience yet.

Five Minutes Ago:  New Explosion

Mom found her copy of the neuropsych evaluation and decided to read it.  One paragraph in and she became furious to learn that I had shared concerns with the doctor.  I tried to explain that family members are given a survey and asked to write about their concerns…and that’s what I did.  It’s normal procedure.  I had to explain that I did not write the report.  The doctor wrote it.

She blew up and I did something I have not done ever:  I blew up, too.  Totally wrong thing to do, but it just happened.  I was tired of being blamed for things and being told I exaggerate things.  I told her that I’m not the only one who has made observations and is concerned.  When she asked who else, I was blunt:  staff at Walgreens, staff at Victory Lakes, neighbors, people at the banks, the local police.

She told me she is glad I’m leaving soon to go back to Missouri and to never come back.  As I type this, she is trying to read the 12 page report, much of which has neuropsych/medical terminology.

I don’t know what the rest of the day will be like…or tomorrow or Friday.  I do  know that things are in place for Kevin to check in on her, she has new medicine, she is safe unless she ventures out on her own and no one can keep her from doing that just yet….and I need to recharge my mind and spirit and go back to Missouri for a while.

Fifteen Minutes After Explosion

Mom stopped reading the evaluation report and went upstairs.  A few minutes later she came down and nicely asked me to remember to tightly put the cap on the toothpaste because it leaks out and she’s been cleaning it up.

“Ok,” I said.  “I’m sorry.  I know it leaks. I’ve cleaned it up, too.  I’ll try to be more careful.  And I’m sorry I yelled at you.”

“Oh, we both get a little upset now and then.”

(Yup)

Five minutes later she asked if I’d go with her to go see Dad again, “while I’m still able to.”

“Sure.”

So off we went for a late afternoon visit.  Mom was with him during his dinner time and she was delighted to see him calm and smiling.   She and I laughed and chatted in the car…not a sign that we had been screaming at each other an hour earlier.

They were so cute together…happy being near each other. She loves to hold his hand.

Mom and Dad May 11, 2016

After the dinner visit we came home, had some leftovers and she hugged me.  “Am I better today?  I’m doing okay, right?  Please tell me I am,” and she laughed.

“It’s all good, Mom.  We’re both doing just fine.”

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