Parental Journal 79 from Planet Elderly – Mom’s Visit to Columbia and My Encounter with the Flu

Posted on November 15, 2016 by Jenny Mummert

Monday, November 14, 2016 – early afternoon

Visit to Columbia, MO

A couple days after Dad’s memorial service, Mom and I headed to Columbia, Missouri where I’ve lived for almost 40 years.  The purpose of the trip was for Mom to meet great grandchildren, spend time with some of my friends, and relax a bit.  We went with the understanding that we would be gone about 9 days and I put Mom’s mail on hold so she wouldn’t worry about it.

The day after we arrived, Mom woke up and asked if I would be taking her home.  She asked me that every morning, and every morning I explained that we would be in Columbia about a week.

It was awkward having her visit me.  She liked my little rental house, the front porch, back deck and the large backyard, but she had nothing to do and I think it is now quite difficult for her to sit and read anything like a novel or magazine.  Mom is not one who enjoys having nothing to do, so I found things for her to do and she was thrilled.  Often it was meal prep or after meal clean up.  We do dishes well together and she tried her best to find things and put things back where they belonged.

What she really enjoyed was sweeping the back deck.  Acorns and leaves were starting to rain down big time, so I gave her a broom and off she went.  At home she loves to vacuum, so this was similar.  She did a great job.

mom-sweeping-acorns-on-back-deck-oct-2016

mom-oct-2016-sweeping-deck-columbia-01

We had a nice luncheon with a bunch of pals, hosted by friend Bonnie.  We also invited a couple of my friends over for a blueberry pancakes breakfast, and we enjoyed coffee and a delicious apple dessert at another friend’s home.  Mom was delighted to meet my friends and often commented on how lucky I was to have so many friends.  I not only feel lucky, I feel blessed.

In addition to friends, I arranged for Mom to spend a little time with her great grandchildren.  It was sweet to see her enjoy their company, but also sad in knowing that for so many years she could have been a part of their lives if Mom and Dad had moved down to Columbia.  But they never did.

mom-adam-k-oct-2016

mom-laeabha-pax-oct-2016

mom-and-pax-oct-8-2016

mom-laeabha-pax-oct-8-2016

And of course…my cat, Winston, took to Mom immediately.  He’s usually shy and hides from visitors.  And she…SHE WHO NEVER LET ME HAVE ANY PET WHATSOEVER WHEN I WAS GROWING UP…she adored Winston.  They became best buds…and I was delighted.

mom-and-winston-oct-2016

mom-and-winston-oct-2016-02

I came to understand that Mom’s desire to be home was also a desire to be closer to Dad. It was as simple as that, so after all the planned activities were finished, I took her back to Illinois a few days early and she was thrilled to be home.  I stayed a few more days and then returned to Columbia on a Saturday.  On Sunday I helped my landlord clear up fallen branches from old trees, and by the end of the day on Monday I was in my doctor’s office with a diagnosis of flu and bronchitis.  Oh, hell.  Why not?

 

My Encounter with the Flu

I meant to get a flu shot in early October, I really did.  I could have gotten it at the Walgreens in Grayslake, but did I?  No.  For some reason I wanted to wait until I got back to Columbia.  I was planning to get the flu shot the day the flu welcomed me with open arms.  Now that I’ve recovered and gotten my flu shot, I can say, “Oh, well.”  But at the time it hit, all I wanted to do was crawl in a hole, go to sleep and never wake up.

It was the first time the flu had taken me down so completely.  I had it once before when I thought it was just bronchitis but then tested positive.  This time, all I can remember is the overwhelming lethargy and loss of appetite…the constant chills…the inability to get my mind to shut up when I tried to sleep.

I remember lying in bed and thinking, “Now I know why sometimes old people are just so tired of being sick, they just want to die.”  Then I remembered something important:  I am old.  Next March I turn 70 and that officially labels me as elderly in many facets of society.

Lying in bed I had too much time to think and no desire to do anything else other than drink lots of cold water and pee a lot.  Could not read, could not enjoy TV or Netflix movies…could not eat or sleep well…just generally miserable and also quite sad.

I think the year and a half of frequent trips to Illinois, trying to manage my folks’ care from long distance, and watching Mom’s short-term memory deteriorate while Dad’s end stage dementia moved him to give up on eating and drinking anything and then die looking like a shell of the man he once was…it all came to a head and I got sick…first with the flu and then with a rather deep bout of depression.

And then Donald Trump wins the presidential election.  !!!!!!!

Time has moved on. I’m over the flu but miss my Dad very much.  Mom is living independently at home for now with assistance from neighbor Kevin when needed…and even when she thinks it’s not needed.  She calls me frequently with the same confused thoughts and misconceptions about bills and banking.  At least she can still ask questions and hold a conversation.  She might not remember it the next day, but she can call again and I’ll explain it again…and again…and again.   Should she need more assistance, my hope is that she be able to remain in her home as long as possible…even if it means professional assistance later.  She does not want to move to Columbia and I will not uproot my life and move to Illinois.  I am able to be my mom’s manager and she appreciates that, but as the only child, the role of primary caretaker is impossible for me…and she has often said she does not want to put me through that.

So we move along day by day…phone call by phone call…until our next visit.  I know Mom is comfortable and relatively safe under Kevin’s watch…but I also know she is lonely and unhappy.  “I’m so tired all the time,” she tells me.  “I understand,” I tell her.

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Parental Journal 78 from Planet Elderly – Dementia and Grief

Posted on October 15, 2016 by Jenny Mummert

Monday, October 3, 2016 – very early morning

It’s been ten days since Dad died and the most painful part is to witness Mom struggling with her grief.

Vigil Time

Mom and I sat with Dad who had become bedridden. He had not been eating or drinking anything; thus, his decline was rapid and dramatic.  His face was thin and drawn, his chest bones protruded extensively, and his arms were nearly as thin as Mom’s.  One CNA stopped by and was shocked.  “He was just sitting at the dining table last week,” she said.

It was clear to the staff and to me that he could die at any moment.  Mom, however, would hold his hand and kiss it…cry…and often say things like, “Oh…I hope he gets better soon.”  Then I would gently coach her on what was happening and she would cry.

At times, she stared at his open mouth, joking that a fly might fly in…not understanding that he could no longer close it.  I just nodded my head and winked.  Then I remember one time when she was quietly and earnestly studying him.  She looked at me and announced, “I think that’s a good weight for him.”  I didn’t nod.  I didn’t speak.  I looked at her managed a tiny smile.

The Week Afterwards

Dad died on a Thursday and I thought having a memorial service that Sunday would be a bit too soon.  As it turned out, the funeral home was quite busy that weekend, anyway.  We arranged for the service to be the next Sunday, October 2 from 1-2.  I wanted a day and time convenient for the few people who might be able to join us.  We were a tiny family of three…now two…with a few second cousins and a couple of Mom’s friends and neighbors.

Turns out it was a more difficult week for Mom than I expected.  At first she seemed very accepting of what had happened.  She wanted to be busy, so we spent some time shredding ancient receipts and utility statements and finished these sessions with Affy Taffy caramel apples.  When I think back, I was rather surprised at how easily Mom made decisions about Dad’s memorial service…initially.  After arrangements were made, she was often confused…thinking there would be “a viewing” and worried about having a meal for people who came to the service.  She also worried about giving Dad’s underwear briefs to my son.  She was totally baffled when I suggested Adam probably would not be interested, that he probably liked a different style.  “What about Dad’s coats?” she asked.  “Sure,” I said.  “Adam might use some and if not, he will find others who can use them.”  She seemed pleased with that.

Memorial Service

We had about 20 people join us in honoring Dad.  I led the service and started with asking folks to introduce themselves and tell how they came to know my parents.  It was a nice beginning.

I followed with a talk of remembrances that ended in gratitude for a man who was a wonderful husband and father. Some memories made us laugh; some made us sigh. The only time I cried was when I spoke about Mom and me being with Dad when he received last rites.  It was a very meaningful tradition to witness.

I ended the service with the following reading by Rabbi Alvin I. Fine

 

Sympathy

Birth is a beginning
and death a destination
And life is a journey:
From childhood to maturity
and youth to age;
From innocence to awareness
and ignorance to knowing;
From foolishness to desecration
and then perhaps to wisdom.
From weakness to strength or
from strength to weakness
and often back again;
From health to sickness
and we pray to health again.
From offense to forgiveness
from loneliness to love
from joy to gratitude
from pain to compassion
from grief to understanding
from fear to faith.
From defeat to defeat to defeat
until looking backwards or ahead
We see that victory lies not
at some high point along the way
but in having made the journey
step by step
a sacred pilgrimage.
Birth is a beginning
and death a destination
And life is a journey;
A sacred journey to life everlasting.

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Parental Journal 77 from Planet Elderly – Five Days of Hospice

Posted on September 24, 2016 by Jenny Mummert

Saturday, September 24, 2016 – early morning

My wonderful dad, Victor Anthony Leogrande, peacefully passed away on the morning of Thursday, September 22 after receiving five days of hospice care.   It filled my heart with joy and gratitude that Mom and I were with him and she held his hand as he died.

Call from Nurse Sherry

Last weekend I received a call from Nurse Sherry at Victory Lakes.  She told me the doctor had ordered hospice care and that they would be contacting me.  I was planning to return to Illinois on the 21st, but told Sherry I would return on Monday the 19th.  “Good,” she said.

Nurse Sherry told me the doctor had spoken with Mom and she told him she did not want Dad to be sent to the hospital.  I learned later that staff members in Dad’s wing were quite surprised at Mom’s response.  I know we had talked about this possibility and maybe the key message of our talks remained with her.  We did not want Dad hooked up to machines and he would not have wanted that either.

Dad had had a rough couple of weeks with lots of agitation.  He had also stopped eating and drinking.  Clearly he was suffering and the goal became comfort care.  All regular meds were ceased and comfort meds were to be administered as needed.

mom-sept-21-2015-vigil-with-dad

A Restless Night and an Early Visit

When I returned to Illinois on the 19th, Mom was sleeping.  I told her I’d like to go visit Dad.  She got dressed and we went.  His physical decline was markedly fast.  He was bedridden now and was quite withered.

Mom held his hand, kissed his cheek, and spoke to him often.  She told him he was her life…that she loved him…and that he was a wonderful husband.  I held his other hand at times; at other times I stroked his head.  I thanked him for being such a wonderful father…for taking  good care of Mom and me;  I told him I loved him and that everything “is okay.”

The night before he died, neither Mom nor I slept well.  We were both restless and up early.  We felt the need to be with him earlier than usual, so we drove to see him a bit after 7 a.m. thinking we would do a morning, midday, and evening visit.  We sat with him at about 7:30 a.m. and he took his final breaths at about 8:15 a.m.  The hospice nurse from Journey Care was there and gently told us that he was actively dying.  Finally she said, “I think he’s gone.”

We stayed close to him while nursing staff continued to check his vitals.  We watched his color change and felt his skin cool.  Mom kissed him one last time and we left the room while staff checked him over and called the funeral home.

gail-at-victory-lakes-062515  Gail, one of Dad’s caretakers.

The Village of Victory Lakes has a wonderful tradition.  When someone has died and is ready to be transported out of the facility, a special blanket is draped over the deceased and family members plus any staff who are free join together in a procession to escort the resident outside.  A few remarks are shared and a prayers are said.  In our case, one of Dad’s main caretakers, Gail, led the little service.  Hugs and prayers are shared with family members and the resident is escorted away.  Emotional and physical support remains for family members.

Mom said, “It was like a little funeral procession.”   It was.  It was so meaningful to have so many of us escort Dad from his “home” of the past year and a half to the fresh air of the first day of autumn.

For me, this was the beginning of real grieving and tears.  Mom has been grieving and crying since February of 2015.  I cannot begin to imagine what it is like to be finally parted from someone you have been married to for almost 60 years.  It has been a wonder to witness.

We have arranged to have Dad cremated and will have a small memorial service on Sunday, October 2 from 1 to 2 p.m.

Dad’s obituary as it will appear on Strang Funeral Home’s website:

Victor Anthony Leogrande, 94, a resident of Grayslake, passed away Thursday, September 22, 2016 at The Village of Victory Lakes in Lindenhurst where he received wonderful care. He was born July 1, 1922 in Syracuse, NY.  Victor was a World War II veteran having served with the US Army.  He was a lifelong employee of Walgreens and a loving husband and father.  Victor is survived by his devoted wife of 60 years, Pearl, his daughter Jeanette Mummert, his grandson Adam Victor Shearin, and his great-grandchildren La’Eabha Shearin, Pax Shearin, and Kaylin Shearin.  He was preceded in death by his parents, and his brother John Leogrande.  A memorial service is scheduled for Sunday, October 2, 2016 from 1:00 to 2:00 pm at Strang Funeral Chapel & Crematorium 410 E. Belvidere Rd. Grayslake, IL 60030. In honor of Victor’s service to our country during World War II, please feel free to make a donation to The Wounded Warrior Project.  For more information please contact (847) 223-8122 or log onto http://www.strangfuneral.org.

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Parental Journal 76 from Planet Elderly – With Apologies to Frank Sinatra

Posted on September 9, 2016 by Jenny Mummert

Thursday, September 8, 2016 – afternoon

Just like Sinatra, Mom wants to do things her way, but for how long can we keep the current arrangement afloat?

We have a schedule where neighbor Kevin takes Mom to see Dad four days a week, and a staff person from BrightStar takes her three days a week.  She’s required to have a companion in order to spend time with Dad.  Kevin also keeps tabs on her, making sure she’s eating, watching her come and go, and assisting if she requests help.

So far the schedule is working out, except for the fact that she doesn’t seem to remember if she has seen Dad…or if she remembers, the memory is vague.  Kevin tells me it’s not unusual for Mom to visit Dad in the morning with a BrightStar person and then 20 minutes after being brought home, she’s at Kevin’s door saying she needs to go see Victor.

Poor Kevin.  He’s been next door for over 20 years and has helped my folks through more than a few of Dad’s medical emergencies.  But now with Mom’s vascular dementia and short-term memory loss in full bloom, Kevin and his wife, Sue, get very little peace.  Mom frequently calls or rings their doorbell.  I’ve suggested they not always answer the phone/door…but good-hearted Kevin worries that “it might be an emergency.”  In short, Mom is driving Kevin kind of crazy.

In addition, Kevin isn’t crazy about spending time in Dad’s wing.  With Dad’s increasing agitation, Mom’s emotional outbursts before, during, and after she visits him, and the shouting, singing and cries of other residents, it’s not an easy place to be.  The staff, however, are wonderful folks who do their best to keep residents in the C wing comfortable.  It’s a huge undertaking.

Hospice Assessment

Yesterday I received a status update from Sherry, a nurse in Dad’s wing.  She reported increased agitation that isn’t responding to some medicine, refusal to eat or drink much, loss of weight, and having some blood and urine tests done.  The doctor has approved an assessment by hospice, and Sherry is fairly certain he will qualify.

I’m just curious.  I wonder what hospice does for someone like my Dad.  Maybe they make medicine adjustments by adding or deleting.  The goal is to help Dad be more comfortable and I don’t know how that’s done when he’s so agitated and the medicine they have been using is no longer helping.  I’ve posted a question on agingcare.com and hope some people respond.

I’ve requested that hospice not be discussed with Mom.  She’ll be confused and potentially hysterical.  Just tell her Dad is receiving some extra care.  I return in two weeks and I will want to talk with her gently and coach her on Dad’s decline.   It’s not like she’s unaware; she reminds me that he is to be cremated and she wants a little bit of his ashes to keep.  However, recently when I asked her, “How’s Dad?” her response was, “Oh, fine.  He’s pretty quiet.  Looks good.  Doing better than I am!” …when, in fact, I’m told by others of his outbursts, agitation and decline, which were evident during my last visit.

We’ll see what the blood and urine tests indicate and see if Dad is approved for hospice care at this time.  I certainly hope so.

Worried about Mom

Meanwhile, Mom is doing things her way, but when I talk to her on the phone she is miserable most of the time.  She’s in her own home and by herself as she wants.  However, loneliness and boredom are taking their toll.  Confusion continues big time:

  • Not remembering if she brought his laundry home
  • Not remembering if she saw him in the morning
  • Not remembering if she got the mail
  • Not remembering what day it is
  • Not remembering that the TV remote is not the phone
  • Not remembering that the phone is not the TV remote
  • Not remembering how to use the TV remote
  • Not remembering if she has food in the house until I prompt her to look
  • Not remembering she has funds until I prompt her to look for her bank books
  • Continued confusion with mail and the list of important phone numbers typed for her and posted on the refrigerator door
  • Difficulties dialing the phone

It’s a good thing I am managing the house accounts and the account for Dad’s care.  She asked me to do that a year or so ago.  Most of the time she cannot remember where she put her bank books…and she still calls me on occasion, angry that she does not have her own checking account.  Then I remind her that she does, where it was the last time I saw it, and she calms down after finding it – again and again and again.

Assisted Living…Maybe?

Although she is basically managing one day at a time, Mom is crumbling socially and psychologically. Yesterday she told me, “I hate sitting around looking at these four walls.  This is no way to live.  This is like death.  I just want to run away, so don’t be surprised if I do.”

If Mom agreed to spend the winter months in assisted living at Dad’s community, she would have more people and activities to engage her.  And if Dad’s condition worsens and he dies over the winter months, she will have people there to rally around her and keep her company until I arrive.   All these “ifs.”     Life is full of them, isn’t it?

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Parental Journal 75 from Planet Elderly – Mom’s 90th Birthday Present to Herself: Passing Her Driving Test (Yipes!)

Posted on August 22, 2016 by Jenny Mummert

Wednesday, August 17, 2016 – Evening

What can I say?  The gal’s got guts.  After seven failed attempts previous to this visit, I took her to the motor vehicle place today thinking this would do it; this would convince her to voluntarily give up driving after she fails one more time.  She passed.  The tester said it was “almost a fail…but really, she just made little mistakes so it’s a pass.”  Mom was beaming.  I was not.

“She was so nice,” Mom said.

“I’m sure she was,” I said as we drove home.

“Yeah, the lady testers are much nicer than the men,” Mom said.

Not only did she pass, she passed using her reading glasses.  Jeez.

So…plans are revised.  Mom can legally drive for another year.  As before she will do so only in nice weather and her destinations are minimal.  She has not had an accident in recent years other than losing side view mirrors as she attempts to pull the car out of the garage, and to her, those incidents do not count as accidents.  Right.

When I told Kevin he said, “What are we gonna we do?”

“We step back,” I said.  “She still makes her own decisions and the State of Illinois has given her permission to drive. So be it.  We stay on the sidelines for support and/or rescue.  She’s doing this her way and I have no legal authority yet to stop her.”

However…if she should have an accident or run into problems with getting lost…then we’ll need to disable the car.  Kevin can assist with that.

Alas…the driving saga continues.  Who would have thought????

Birthday Gal

Overall, Mom enjoyed her 90th birthday on August 16.  Mom shares a birthday with Dad’s former roommate, Raymond, so Raymond’s daughter, Judy, made some lemon pies for both and we celebrated in the lobby area of where Dad and Raymond live at Victory Lakes.  Dad was too agitated to join us, but Raymond’s wife, Betty, Sister Margo and another retired nun whose name I can’t remember (sorry)…joined us.   Judy’s lemon pie is delicious.

birthday 081616

birthday 2 081616

 

After visiting Dad, I took Mom to see the Meryl Streep film “Florence Foster Jenkins.”  We enjoyed it.  I thought it was well done, very amusing, and quite tender.

Following the movie Mom insisted on buying dinner, so we went to Chili’s and she had a steak.  I enjoyed some pasta/chicken/Alfredo sauce dish…a bit rich, but enjoyed the other half for lunch today.

Mom 90th birthday dinner 081616

Dad was quite agitated during our two visits yesterday.  He gives orders…tries to figure some things out…and struggles so much to say what he means.  It makes Mom cry to see him say sentences like, “We got the flub dub tub trub…uh….oh….I don’t know…how to zip…zap…zippy….”  I’m coaching her on his changes and I think she pretty much understands that he’s just not able to say what he wants to say much of the time.

We took a selfie at the end of our second visit with Dad on Mom’s birthday.

birthday selfie 01 081616

 

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Parental Journal 74 from Planet Elderly – Happy 90th Birthday, Mom! No More Driving

Posted on August 14, 2016 by Jenny Mummert

 

Saturday, August 13, 2016 – afternoon

Tomorrow I drive back to Grayslake, Illinois to spend some time with Mom and visit Dad.  Mom turns 90 on August 16.  Rather than feeling dread, I feel resolute.  I’ve done a lot of thinking and planning concerning different options for the future care of my folks.  Sometimes it feels like an exercise in futility, but at least I’m thinking about options and relatively okay with each.

Options

Mom receives in-home care as needed:  transportation, assistance with medicine, etc.   (She says no to this.)

Mom moves to assisted living apartment at Victory Lakes where Dad resides in skilled nursing.  (She says no to this.)

Mom and Dad are moved to Missouri and live at Lenoir Woods where the three of us will live in the same community and have the support of additional family and friends.  (She says no to this.)

So there we are:  no, no, and no.  She is fine, doesn’t need any help, and insists I just stay in Missouri and live my life.

Ah…easier said than done.

Current Goal

Have her living as independently as possible at home with assistance.  We need to transition from Kevin providing assistance 24/7 every time she calls and knocks on the door…to having her accept BrightStar for transportation assistance (for starters).  (She’ll say no to this.)

Strategies

Called Mom’s friend, Dorothy, and a distant relative, Carol, and brought them up to date on Mom’s diagnosis and decline.  They were supportive.

I’ve written to her primary care physician asking for a letter saying she needs assistance.  I have not received it yet.

I’ve written a letter to the neuropsychologist who tested Mom and asked for a letter saying she needs assistance.  It’s being mailed today.

I’ve written a letter to Officer F. of the Grayslake Police Department.  Gave him an update on things…just in case he gets some calls from neighbors…store clerks…bank personnel….????

Mom’s car keys will be taken away on August 17. download

Her driver’s license expires on her 90th birthday, August 16.  She failed three attempts to pass the driving test and has not asked to take the test again since I’ve been back in Columbia.  As of August 16 it is illegal for her to drive.  Kevin has one key.  I will search for the other two and confiscate them.  Then I’ll have to figure out what to do once I have them.  She will be furious.  I’m dreading her tornado of anger.  Kevin and I will consult on this.

Planning to have a caregiver from BrightStar join Mom and me on a couple visits to see Dad.  May need to have an in home visit first.  Not sure what to expect other than to have Mom reject the idea of assistance from Brightstar.  Just want to have them on board to provide her with transportation assistance…but she may still refuse.  It’s cheaper to have them use Mom’s car…and that will likely be problematic…a stranger driving her car?  Hell no!  Loss of driving privilege is HUGE…I understand.  However, I will be relieved to have the keys secured and to know she will no longer be at risk of injuring/killing herself or someone else.

Mon has a right to refuse anything I suggest.  She does not have a right to drive illegally.  That will be my mantra.

This is not going to be an easy visit.  I expect she’ll be ordering me to leave and go to hell right after we discuss the driving issue.  images

 

I don’t know if it will do any good, but I hope to have a conversation with Mom about why it’s best to cooperate and work together to decide what assistance she needs now.  If she refuses to cooperate, there could be difficulties in the future that will necessitate that someone (Me? Neighbor?  Police? Paramedics?) call the county or State.  If that happens, she could be forced into a living situation she would hate.  It’s just a possibility…but it could happen.

And, of course, I expect Mom’s mantra to be:  “Just let me die.”  It’s her go-to expression when she’s furious, depressed and frustrated.  I’ve run out of “caring” responses when she says “Just let me die” or “I want to kill myself and don’t think I haven’t thought about how.”  I won’t be responding with words anymore.  I’ll just sit and listen…and if it becomes too much, I’ll go to a different room.

Need to return to Missouri by August 27 or sooner because  I have medical appointments the week of the 28th.

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Parental Journal 73 – Trying to Recharge in Missouri

Posted on July 22, 2016 by Jenny Mummert

Thursday, July 21, 2016 – noonish

I’ve been back in Missouri five days and I still feel unsettled…on edge most of the time.  There’s this constant nagging question, “What are we going to do?”  There’s no simple answer; just have to crawl along and see how things develop.

squeezed clock

Random Recurring Thoughts

The good:  Kevin will assist Mom until I return Aug. 14.   Of course, I keep thinking the phone will ring with some emergency.  It’s difficult to truly relax.

We have the agency BrightStar on board as a back-up, even though Mom says she doesn’t want their help.  At least the intake was done and paperwork has been completed.

The Director of Nursing from BrightStar of Gurnee spoke with by phone yesterday…just checking in to see how things are going.  She had some good suggestions for when I have future conversations with Mom.  It’s also comforting just to speak with a professional who understands what we are going through and what the future probably looks like.

I’m having time with family and friends.  Tomorrow time with son, Adam, and granddaughter, Kaylin.    Next week, a three-night visit with 6 yr old grandson, Pax…followed by a three-night visit with his 12-year-old sister, LaEabha.

When I spend time with my parents, I’ve taken to really look at them…closely and carefully.  I’m trying to memorize them for who they are at this time in their lives…and to remember as much as I can about good times in the past…the happier memories.  I try to remain very aware that despite of difficulties, I am extremely fortunate to still have time with them.  It’s sadder with Dad because he has declined so much.  It’s more challenging with Mom because most of the time she denies anything is wrong; plus we get locked into only child/daughter/mother conversations that sometimes end up as arguments.  The arguments start because she will ask me a rational question and as I try to explain something…chaos ensues.  Caretakers are told NOT to explain, argue, or rationalize with a loved one who has dementia.  That’s much easier to do when the dementia is more advanced.  For now, Mom remains clever, suspicious, and in denial—a tough spot for a caretaker.

Clear realization after this last visit:  I am a good care manager.  I do not, however, have the consistently required patience to be a good caretaker.  I think that’s pretty typical for adult children who were not particularly close to their parents while growing up.

I often envy daughters who had/have a loving and close relationship with their mothers.  Not a part of my life’s script…but I know Mom did the best she could for someone who was unloved and abandoned as a young child.

Ah…nature and nurture.  Both extremely important.

Balanced stones

The not so good:  Mom still has a legitimate driver’s license, although I believe Kevin may be driving her to see Dad most days. She has until Aug. 16 to renew it.  I emailed Kevin this morning and asked him to call me so we could chat.  He doesn’t use email and doesn’t have a cell phone…and that’s problematic at times in this day and age.  Then again, we all survived with landline phones and paper mail just fine for decades.  Different world today…avenues for immediate communication tend to foster urgency which can foster stress.

I often have feelings of resentment that I had to give up working part-time in order to drive back and forth to Illinois frequently.  I try to counter those feelings with the thought, “Well, this is where you are in your life right now.  This is what you need to be doing.”  But what I want to be doing is going on road trips with grandchildren and friends…before I get too old.

Colorado mountains

I feel restless much of the time…often “stuck.”  Interestingly, Mom often feels “stuck,” too.  She feels stuck in her routine and does not want to be a burden to anyone.

My cat, Winston, howls and calls out at 4 a.m. each morning.  My long absences are not good for him.  When I returned last Sunday, he hid behind the refrigerator for hours.  Once he figured out who I was and was comfortable, things were fine.   He’s quite clingy and needy…a bit uncomfortable because he “kneads” me with claws.  Still, I try to give him lots of attention.  Overall, he’s a pretty mellow fellow, even if he’s a bit skittish when strangers are around.My Guy Winston

I dislike the time I spend on the “pity pot.”  I feel as though I SHOULD NOT be there because my circumstances are far, far easier than others.  Nevertheless, some days, I just sit a bit and pout…wonder…sigh and feel paralyzed, unable to plan.

I live with the feeling that my life is on hold and I feel caged.   What I need to remember that every day of this life is a gift…whether on the pity pot or not.

pity pot

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Parental Journal 72 from Planet Elderly – Trip Back to Missouri Delayed

Posted on July 17, 2016 by Jenny Mummert

Saturday, July 16, 2016 – early morning

After last night’s trip to Condell Immediate Care Clinic, I decided to stay a while to make sure Mom’s leg wound swelling goes down and that she manages the schedule for when to take her antibiotic

Mom woke up a bit ago to make sure she said goodbye before I left.  It was 5:45 a.m.  When I suggested I stay a bit longer, she did not object.  She toddled back up to bed and I’m enjoying some early morning coffee.

Evening

The swelling has gone down, but Mom remains confused about taking the medicine.  Not good.

This afternoon I asked Mom what her plans were for next week.  In addition to seeing Dad, she said she was going to get her friend Evelyn, bring her back to Grayslake, and have her stay a few days.  She intends to drive herself even though she has no idea how to get there.  She was not aware she has a doctor’s appointment Monday, but I reminded her.

When I suggested having some transportation assistance from BrightStar, she flatly refused.  She doesn’t want assistance from anyone except maybe Kevin.  Then she lectured me about how I make her nervous, told me to go home and forget about her because if she dies it’s a good thing because then she won’t need to worry about anything.  Finally, she got in her car and left.   I understand her frustration.  I would feel the same way under these same conditions.

I went for a ride, too. I wanted some fresh air and time alone.  I ended up relaxing in the parking lot of the public library…and decided to tend to my own physical and emotional health.  I will return to Missouri tomorrow.  I spoke with a representative from BrightStar, and she confirmed that they cannot assist Mom without her permission.  Then I spoke with my best friend, Bonnie, for a free counseling session.

After my phone visit with Bonnie, I stopped for a root beer float…then headed over to visit with Kevin to tell him Mom now refuses assistance from BrightStar.  Kevin was already over at Mom’s…and surprised to see me because he thought I had returned to Missouri.

I filled Kevin in on last night’s visit to Condell Immediate Care Clinic and why we went there.  Then we talked about Mom’s antibiotic schedule, and in the process of counting them, discovered that she had taken more than she should have…even though she has a sheet to follow.  Her ability to follow a written medicine schedule is gone.  She’s even confused with a weekly pill dispenser.  Most of the time she ignores it and gets pills from the bottles…when she thinks it’s necessary.

Kevin had a firm conversation with Mom about her meds.  I said I thought he should take over distribution of medicine and he agreed.  Mom did not have a say in that.  She’ll be pissed about it tomorrow and forever, but she has not been taking her regular medicine and she messed up on the antibiotic already, so in our minds she is pretty much done with managing her own medicine.    We are forcing assistance on this issue.  Done.

Next forced lesson:  not being able to pass the driving test and therefore needing transportation assistance.  That lesson should be resolved by mid-August when I return.

Gee…more drama ahead.    That said, I fully realize that there will come a day when I will miss the drama we had struggling to keep Mom safe and comfortable.  I will miss her fiery temper…her tenacity…her determination…her giggles.

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Parental Journal 71 from Planet Elderly – Maybe a Bit of a Breather

Posted on July 16, 2016 by Jenny Mummert

Friday, July 15, 2016 – evening

Things are in place so that I can take a breather and return to Missouri for a few weeks, but it could also be cut short.  I drive back to Missouri tomorrow with the plan to return to Illinois Aug. 14.  Mom turns 90 on Aug. 16.

Visit to Condell Immediate Care

Tuesday Mom became angry during a discussion Kevin and I were having with her.  We were talking about the possibility of her not driving.  She got mad, claimed she could walk to see Dad, and then promptly left the house in 90 degree weather with no identification.

Kevin and I waited a few minutes.  Then we left to see where she might have gone.  We couldn’t find her, so Kevin took her car to search.  I headed back to her town home in case the phone rang.  She was home.

The next day I noticed she had blood on her leg.  She fell while walking, but claimed nothing hurt.

Today she had swelling and some discoloration.  Despite her resistance, we went to Condell Immediate Care in Gurnee.  They did an x-ray to rule out the possibility of any broken bone.  None broken.  She started on an antibiotic and needs to take it for 7 days.  I created a sheet so she could keep track of when to take the pills.  As I type, she’s watching TV with an ice pack on her swollen foot.

Do Nothing Lawyer

The lawyer who assisted my folks with wills and trusts has not replied to my request for a paid consultation.  I’m not surprised.  She did not return a call I made in 2015.

All Set for In-Home Assistance When Needed

On the plus side, Mom, Kevin and I met with the Director of Nursing from BrightStar of Gurnee the other day and had a two-hour meeting at Mom’s.  As a result, we now have additional support for Mom to have any assistance she will need in the future.  We will start with transportation as needed, but if her needs increase, she can have more assistance.

Nice Visits with Dad Today

Mom got some smiles from Dad today during our visits.  He looked around and tried to speak occasionally, but the words would not come together.  Thoughts were there, sentences were started with a word…restarted with another word…and then lost.  He also seemed to have somewhat labored breathing.  It was one of the better visits this past week or so.

Dad and Mom July 15 2016

Photo below:  Mom and Teresa.   Teresa is the wife of Franz, Dad’s roommate.  She lives in the independent living section of the Village of Victory Lakes and visits Franz daily during meals when she feeds him.

Mom and Teresa July 14 2015

 

Complications Ahead

As Mom continues to resist the need for assistance from anyone, I feel a bit of ease knowing we have BrightStar on board if needed.  They are just a phone call away.

Not kidding myself, though.  The shit could hit the fan at any time…and probably will, what with Mom still determined to pass her driving test…Dad declining…etc.

Just hope things can remain stable until I return in four weeks.  It’s a faint hope, though. I may be back sooner.

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Parental Journal 70 from Planet Elderly – Anger, Confusion and Root Beer Floats

Posted on July 13, 2016 by Jenny Mummert

Tuesday, July 12, 2016 – mid-morning

The past couple days have been a roller coaster of emotions again—for both of us.  Pretty normal for families in our situation.                going crazy

I Resigned from Project Driver’s License

Mom failed her third attempt last Friday.  Apparently I was mistaken in thinking she had only three attempts and then would have to wait a year.  We were told she could take the test as many times as she wanted.  Only doctors and law officials can complete a form to attest to someone’s ability to be a safe driver.  If people pass the test, they can drive.  No limit to the number of attempts to pass the test.

We had a conversation with one of the clerks because I questioned the policy.

“You failed the test three times?” she asked Mom.

“Yes.”

“Why did you fail?”

“I don’t know.”

“What did the examiners tell you after the tests?”

“Nothing.  They didn’t tell me anything.”

“They talk with you and review the results.  Who did you take your test with today?”

“I don’t know…someone.”

“Was it a man or a woman?”

“I don’t know.”

“You don’t know??  Were they wearing glasses or not?”

“Yes…I think maybe glasses,” Mom said.

“Just a minute,” the clerk said, and off she went.  A couple minutes later we were escorted to the manager’s office.  He tried to tell Mom that it was time to stop doing all the work…time to be driven by others.

“NO!” she shouted and stormed out of his office.

I explained our situation with me living 400 miles away and how doctors and others, including myself, are concerned about Mom driving, especially when she is emotionally upset.  She doesn’t drive much and only to a couple places…but I’m trying to ensure that she does not hurt herself or others.  I told him I was hoping DMV could be the bad guys in this.

He handed me a form her doctor could fill out attesting to her ability to be a safe driver…or not.  The form requires Mom’s signature to give the doctor permission to submit the report.  Right.  If she knows what it’s for, she will not sign it.

The manager had a look of apology, but Illinois has its system and there wasn’t  much he could do.  Interestingly, Judy Beyer, a new friend here, told me she knew someone whose elderly parent passed the test.  The examiner said, “He passed the test…but he really shouldn’t be driving.”

Later that day I sat Mom down and said I am no longer involved in assisting with the driving exam…that I agreed with doctors and others, and if she wants to keep taking the test she will need to do it on her own or with neighbor Kevin’s assistance.  I’m done.    She listened quietly and said, “Okay.”

As I write this with light classical music playing in the background on TV and enjoying time alone, I believe she and Kevin have left to do some practice driving.  I thought she and I were going to visit Dad today around 10, but she probably changed her mind.  We’ll go see Dad later.

Next Steps

There were some wild outbursts over the weekend.  It’s not how she wants to be.  Vascular dementia can be fairly ugly from what I’ve read.  It is also terribly sad to see a loved one confused and angry…wishing she were dead…hating her life one minute and then enjoying a bowl of chocolate ice cream the next.  Sometimes Mom will say, “I don’t know what’s wrong.  I feel like I’m losing my mind.”

I finally had to have a careful talk with Mom about how I need help (got this idea from good friend, Bonnie)…how we need to talk about plans in the event that she is no longer able to drive someday.  At first she was angry and defensive.  She thought I wanted to put her away.  I was finally able to convince her that she is doing fairly well for now and that I want her to live at home and see Dad as often as she wants.  To do that, we’ll need more assistance than what Kevin can give.  He has a life, too, and he cannot drive her everywhere.  I told her I found an agency that provides all kinds of services to families like ours…including just simple transportation.  Then later, if more assistance is needed to keep her home, that can happen, too.  I stressed how much more at ease I would be at home in Missouri knowing she had resources to keep her safe and comfortable.

I was expecting more arguing, but she said, “That’s okay.”  I stressed that I wanted to just have a meeting to get to know more about what they do and tell them about our transportation need.  She was perfectly fine with that, so I contacted them through their website and should hear from them this week.

Another thing Mom agreed to was to have a visit with the attorney who drew up their wills and trusts.  Those are in place, but I want us to meet with her to give her an update on our family’s situation and find out if she has any recommendations for us, especially since I live far away.  There are some elder care issues I want clarified in terms of Illinois law, and maybe she has answers or can refer us to an appropriate attorney.  I hope to avoid the whole guardian thing.  If Mom starts accepting some in home assistance as her needs for it increase, then that will be fine.   I filled out information on the lawyer’s website as well and hope to hear from her soon.  I’m wary, though.  I attempted to contact her via phone several months ago and she never returned my call.

So…hoping to have two meetings soon…and resources in place to assist Mom as needed before I can return to my life in Missouri for a few weeks to recharge and see family and friends.

Incidents of Concern

To the Bank:  Saturday Mom had difficulty driving to a familiar place:  Bank of America…just down the road on Illinois 120.  She had a check to cash and I stayed home.  She was gone much longer than expected.  When she returned she said she had been to four banks and none of them would cash her check because she didn’t have an account there.  Trying to have her retrace her steps was of no use.

“Well, did you get the check cashed?”

“Yes I did.”

“Where?”

“I don’t remember.”

Finding Dad’s Room:  During this visit, I’ve noticed that Mom is uncertain where Dad’s room is.  She cautiously walks down the hall of Dad’s wing reading the names.  When she sees his name, she looks surprised.  A month ago, she just walked straight to his room with no effort.

Laundry Confusion:  Mom will do Dad’s laundry, fold the clothes (usually just a few items because she collects his dirty clothes every day), and puts the clean clothes on the couch, ready for her next visit.  What she keeps doing now is going downstairs to see if the laundry is done…even though it is clean, folded, and placed on the couch.

Thank Goodness for Root Beer Floats

Yesterday was hot and muggy.  We visited Dad three times, but each time he was asleep in his chair and fairly unresponsive.  He was eating well, but was quite sleepy whenever we showed up.

dog and suds

On our way home from the afternoon visit, I suggested we go get a root beer float.  Mom was thrilled.  We drove to Dog N Suds.  She didn’t wait for the person to come to the car to take our order.  Instead, she got out of the car, found the young lady server and ordered two large root beer floats.  The young lady was very kind…concerned that Mom would find her way back to the car, and she did.

We sat in the car like a couple of teenage pals. We didn’t say much…just enjoyed the floats.  When we got home, we were both full of root beer and creamy vanilla ice cream.  Suddenly we both felt tired.  I think we literally passed out.

I woke up about 5 p.m.  Mom woke up a bit later and thought it was the next day. Great naps!! We made a third trip to see if Dad was a bit more awake.  He wasn’t, but we sat with him, she held his hand, and shortly before we left he opened his eyes just wide enough to see her and give her a little smile.  She was happy.

Coneflowers folks July 2016 01

Bees and butterflies are enjoying the coneflowers I planted a few years ago in Mom’s little patch of ground next to her townhouse patio.

Coneflowers folks July 2016 02

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