Empty Drawers

I’m emptying drawers.  Lots and lots of them.  And closets, cabinets, boxes, hutches, storage bins….  everywhere I turn is another little treasure trove of memories.  It takes time, this going through another’s life.  But I have discovered that it is my way of saying Goodbye.  I love it.  I love every scrap of paper, note, newspaper article, card and picture.  I can see what mattered to them most.  Momma  has been gone 7 weeks now and Daddy 6 years.  They both kept so many notes and cards from all of their children and grandchildren; articles in newspapers about one of our accomplishments or newsworthy events were tucked away along with the 1969 newspaper from the Landing on the Moon!

I thought I was waiting until Spring to sell the house for many reasons other than the real one.  I discovered the real reason.  I really loved taking care of my parents’ house these last 6 years.  It feels good and right to me to go through and examine every single piece in those walls that hold 53 years of love and memories.  From Momma’s 200 pairs of earrings (I’m not exaggerating), to Daddy’s 4 large toolboxes FULL of old die making parts.  I can smile and remember and say “Goodbye, I love you,” with each and every examination. It will take time.  Lots and lots of time.  But I have it and I am going to enjoy every single second of emptying those drawers.

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Eulogy

 I wrote a eulogy for Momma.   Juanita Boone Wisman 1929 – 2015

God doesn’t make mistakes. This is one of the many lessons taught to me over the years by my mother. While there were a million things my mother told me when I was a child… it seems to be this one that stuck the most. When her mother died and it took every ounce of energy she had to get out of bed in the morning, she would still say, “God doesn’t make mistakes,” and I watched her draw on him for comfort and strength.   When her sister died suddenly right in front of her, she still believed this to be true. My mother lived her words of wisdom, she didn’t just say them. I found a journal a few months back. In it Momma was keeping track of what she was thankful for and sometimes how she felt. It’s from 1996 and 1997. It doesn’t have a huge amount of entries, but I wanted to share some excerpts from it as I tell you a little about Juanita Boone Wisman.

My earliest memory of momma is being very tall, with big hair and looking very beautiful. She was always on the go, never stopping, it seemed to me as a child. I would wonder when she rested because she was always up late and up early. JOURNAL Entry – I wish I could feel the way I use to. Kind of feel sorry for myself, very ashamed when I do that. I’m very lucky. God has blessed me over and over.

My mother spent the majority of our childhood in the basement washing clothes. She use to joke that someday she would be found passed away in the basement with a load of laundry running. Every child she had probably had some of our deepest conversations with her while sitting near the ironing board as she hung up clothes.

She listened to each of us as if we were the only people on earth. Teachers thought we were only children because of our mother’s dire devotion. A new teacher once said my brother’s behavior was normal for an only child. “What?”, said Momma, “an only child?, there are 4 more at home!” One time someone asked my oldest brother, Witt, what kind of mom he had. He said she was perfect. The kind of mother, who after you had confessed to murder, would say, “you know you shouldn’t have done that, son. Now where can we hide the body?” That fierce loyalty to her children and then her grandchildren was known by all of her friends and family. She told us all that we were her favorite people. She was our most loyal fan, our truest confidante and our greatest cheerleader. JOURNAL Entry – I’m thankful for my children, always, every day of my life. I’m thankful for my grandchildren. I’m thankful for my sons and daughter-in laws. This particular entry occurred over and over in her journal. There are journal entries of her trips with Tina and Jean, her best friends. She loved to travel and see things and go shopping. Lots and lots of shopping.   JOURNAL Entry – We went shopping this afternoon. I got shoes, surprise, surprise. I’m really not well, but I am going to give Beth some when I get home! She later wrote.. I dread the long drive home, but I am going towards the people I love.

We will all have vivid memories of Mom at ball games, yelling for her child or grandchild… and yelling AT the referee! I have awesome pictures etched in my mind of Mom sitting on her back porch with her grandkids… one or the other and they are just talking to her. . . I can’t hear them , , , but I can see the love overflowing off that back porch. . . just as her many hanging baskets of flowers always did. The last words her granddaughters would hear as they took care of her, “You’re my angel. I’m awfully grateful God gave you to me.”

Lewy Body Dementia took Momma over about 3 or more years ago. It made for memories that were both hard and funny. One time she was reading about her diagnosis and she said, “I don’t like the word dementia, even I know that means you are screwy!”

Her last weeks were very, very hard. Her finals moments were very peaceful, as I sang her favorite hymn to her, I saw her lips moving. Final JOURNAL Entry – I’m getting ready to go home.

Every family claims to have a heritage.. that which is most important and is to be passed along to future generations. The spiritual heritage our parents passed on is unmistakably the greatest gift ever to be given to a family. The grace and mercy and faithfulness of our Lord, Jesus Christ has been handed down from generation to generation. Best advice I ever received? “Make Jesus your best friend”, said Momma,  “then everything will be okay”. JOURNAL Entry – I’m thankful for God never ever forsaking me. I have never been alone. I’m thankful for my faith. Jesus, Jesus, Jesus . . . there’s just something about that name.

Losing momma is a devastating loss. Pain is a testament to the power of human love. We wouldn’t hurt this much if we did not love this much. That is what we do. As the bible teaches us, we do not mourn as those who have no hope….   Our faith will see us through.

Joy may seem to pause for a while as we grieve, but when we allow our broken hearts to be comforted by Christ, we will experience them again. Every person, every walk of life, every kind of past, has hope thru the Resurrection of Christ for this not to be the end. The doors to the Kingdom of heaven are wide open. Remember, as Momma would say, “God doesn’t make mistakes.” May we all be comforted in knowing Momma has walked through the gates of heaven and is with her Lord and Savior and we will see her again in eternity.

I’ll leave you with some final words straight from Juanita.

On one of her last few lucid days, Taylor was asking her questions. “What do you think about everything, Nannie?”

“I think…the world is wonderful…and there are a lot of nice people in it. And we should do our best to be the most understanding and kind to them…and not give up on them.”

What should I wear?

Turquoise.  I chose turquoise because it is colorful and beautiful.  Just like Momma.  She was voted “Best Dressed Girl” at Louisville Girl’s High back in 1946 or so. Momma loved color.  Her red hair lent itself to a closet full of beautiful golds and maroons for Fall, and yellows and greens for Spring. And every outfit had matching earrings and shoes.  Gorgeous.  My Momma was a gorgeous woman.

Funerals in this day and age no longer require wearing all black.  That’s a good thing.  But as a “southern” girl I still felt compelled to wear something dark.  Dark conveys sadness.  Sadness was the order of the day but I chose turquoise anyway.

Before Momma became bedridden and during a particularly lucid day, my daughter was asking her lots of questions.  You have to take advantage of those days which are few and far between with Lewy.

“What do you think about everything, Nannie?”

“I think…the world is wonderful…and there are a lot of nice people in it. And we should do our best to be the most understanding and kind to them…and not give up on them.”

She didn’t give up on people.  Ever.  Many times I wondered why she spent time with certain people I deemed “different”.  Many times I thought she should tell people it was time to “straighten up”.  But she didn’t give up on them.  I now realize her attitude stemmed from her gratefulness that God never gave up on her.

Now she is with God.  And her family and people she loved and those on whom God never gave up.

1 Peter 4:8  “Above all, love each other deeply, because love covers over a multitude of sins.”

Hosparus

If I tell you Momma is now under the care of Hosparus, what is your first reaction?  Probably that she will be dying soon.  If there is anything I know for sure when it comes to my mother, it is that she will go to heaven when she is good and ready and not one second sooner.  It could be days, weeks or months.  Either way, it was a long struggle to get to this point but I am so very glad I made the decision to call.

I could handle the yelling.  I was okay with the irritation Momma use to have when she was having a rough day.  I could ignore the protests when I would change her or clean her up.  These were all par for the course and did not bother me.  But the crying.  She started crying. Real, big, sad tears that were ripping my guts out.  No one wants to see their loved one hurting.  No one sane anyway.  I was failing in the pain management department and had to call in the experts.

People are funny.  You mention morphine and they automatically go into long stories of death and addiction and everything bad.  (Thanks so much for the encouragement by the way). My experience in these last 2 weeks with morphine has been really good.  She no longer cries.  She started drinking water again and her face isn’t in a constant grimace of pain.  She looks peaceful and even told me I looked pretty when I woke her up yesterday.

Don’t get me wrong.  I have no delusions Momma is going to get better.  She is going to die but I will not let her be in constant pain until that time. Whenever that is, I have made peace with my decision and know that Hosparus is the help I needed. The weekend after they signed her up as a patient I prayed constantly for affirmation that I had made the right decision.  That Sunday night she said very clearly to me, “I’m tired of this.  I want this to be over soon.” Thank you, Lord.  You are so sweet to answer our prayers and questions.

Psalm 121: 1-2

“I lift my eyes unto the hills, where does my help come from?  My help comes from the Lord, maker of heaven and earth.”

Home Health Care

Our dealings with Home Health Care have been interesting.  After Momma became bedridden, I finally got her signed up with a service that comes to the house.

After calling her old PCP asking for some Physical Therapy to be ordered, they said she would have to be seen in the office within 30 days of PT’s visit.  I had just explained to them she had been in bed for over 2 months and could not get out.  “What part of bedridden are you not understanding?” I wanted to yell.  People just don’t listen.

So off we were to get an agency/doctor that would come to the house.  The first one did not take her insurance.  She changed from straight Medicare to a Medicare Gap coverage in January. The second one took 2 or 3 days to figure out if they would take her insurance.  Then we were good to go!  A Nurse Practitioner comes every 4 to 5 weeks to check up on Momma and will also come whenever needed.  They can do labs and even x-rays at home.  Great news.

Physical Therapy came and went.  A very optimistic woman came in with the objective of getting Mom out of bed and sliding her across a board to a wheelchair.  “For what purpose?” I wanted to ask.  She can’t stand or hold herself up, so going to the bathroom would be impossible.  And I’m not sure about changing a diaper of someone in a wheelchair, but my degree in Engineering tells me that just MAY be a slight challenge!  These people crack me up.  Oh, I appreciate that no one wants to lay in bed all day, but after a year of pulling Mom from one room to the next (sometimes with 2 people) I am just more realistic about the day to day dealings of someone with Lewy Body Dementia with Parkinson’s.

Today we had our 3rd visit from the NP.  Momma’s knees are really hurting her and she doesn’t do well with narcotics so I wanted to find out what he thought about pain relief. I now have a nice bottle of liquid Tylenol 3 with Codeine in the cupboard.  I’ll keep it on reserve for when the combination of Aleve, Lidocaine pain patches and BioFreeze don’t quell her loud protests when we move her legs.

Stay tuned!

“I wear diapers”

Momma has been very chatty the last few weeks.  This is far from the usual glassy eyed stare she’s had the last few months.  It has been enjoyable to hear her talk; her voice sounding familiar and not strained or distant.

I can’t say we have any long sensible conversations, but just hearing her speak in coherent sentences makes me happy.

Quotes from the last few days:

“We gotta go outside and shake the steak.”

“I’ve enjoyed you,” to my daughter sitting with her one evening.

“I don’t know what’s up with this white in my hair. I don’t like it.”

“Do you like the schools around here?”

“You know, I wear diapers.”

“Is it cold?” She asks about her Activia.  “You eat the other half, I want you to have it.”

“Are you comfortable over there?” she notes looking at my daughter with her legs draped sideways over the chair.

“You’re being awfully quiet,” she says after a non stop ramble of a few minutes.  “I’m tired, Nannie” says my daughter.  “It doesn’t bother me.”

Looking at her flowers in her room, “You see that, I love that little green thing there.  I don’t know why.”

“You’re my babies, I love you,” as my brother and I tell her goodnight and kiss her cheeks.

“You’re my angel. I’m awfully grateful God gave you to me.” to her granddaughter taking care of her.

These are beautiful words.  They are music to my ears.

She’s pretty funny

It’s been a long time since I posted.  Life and work and distractions have gotten in the way.  But lately Momma has decided to say some pretty cute things, so I thought I would share them.

“My rear end is killing me.”

“I wonder why it’s bothering you?”

“It’s bothering me because it’s killing me!”

————-

I was giving her a bed bath and scrubbing pretty good under her arms. Apparently she thought I was a little rough.

“I bet you could beat up Joe.”

————–

The PT lady was moving her legs up and down and bending her knees.  She said she had been here before, 4 years ago when Momma shattered her femur.  She said she remembered walking her around and around the table in the living room.

“Well you should sit down honey, you’re probably tired.”

————-

Momma is still bedridden and we are managing her pain and contractures as best we can.  The contractures of her arms and legs look painful and she seems exhausted the day after she has been having a lot of them.  A muscle relaxer does NOT work.  We tried Baclofen and I spent 48 hours trying to keep her calm from hallucinations until we got the drugs out of her system.  LBD patients are known to have severe reactions to most meds so it’s really important to keep a close eye on any change.

This being said, I went through another round of frustration trying to explain Lewy Body to the new group of nurse practitioners and therapists.  For a disease that is the 2nd cause of dementia it still baffles me how little education the medical community has.  The following link has been my “go to” for all those new to the disease.  With the baby boomer generation growing older, I can imagine that Lewy will soon be a household word like Alzheimer’s.  (Unfortunately).

http://lbda.org/content/lewy-body-dementia-information-patients-families-and-professionals

Watching her sleep

The days are getting longer.  Momma doesn’t converse much anymore and lately she has been sleeping all day.  The tv murmurs in the background and I have all the lights on and window shades open.  Hoping the light will somehow wake her up or make her lucid, if just for awhile.

I wake her for diaper changes, cleaning, food and medicine.  She will smile at me and if I’m lucky I get a word or two. Today she smiles and says “you look pretty.”  It makes my day since I have been sick for two weeks and this is the first time I have had on makeup in awhile.  Still my sweet Momma, always knowing what to say to make me feel better!

Spring is showing signs of emerging and I am finally over bronchitis which set me on my rear for too long of a time. I am so grateful I feel better today.  Praises for her caregiver and my siblings that stepped in while I was sick.  I would watch on the “nannie cam” as people would patiently feed  her, wait for her to chew and give her a drink of water.  It was a wonderful thing to see.  We are most like Christ when we serve others.  It is a gift for us just as much as the other person.

Maybe Spring will revive Momma a bit and we can enjoy the flowers and the beautiful cherry tree that she can see out her window.  I feel a new day coming!

 

Return to “normal”

I want to thank anyone who prayed for Momma’s new caregiver.  As of this post we now have a very sweet young woman with us that seems to be just what I was looking for.  One morning Momma was smiling at her and I asked her why.  “I just love her!” said Momma.  Ahh, music to my ears.

After training for a few days I left them alone and the caregiver said Momma didn’t cry at all when she changed her.  Wow!  More music to my ears. She didn’t run screaming into the streets when Momma had an especially yucky diaper.  I think it was then that I knew all would be well!

I finally found a Home Health Agency that took Momma’s insurance and they came and assessed her. Nothing new or interesting to report.  For someone who has broken most of her body at some point and suffers from terrible pain, dementia and tremors, Momma is basically healthy.  Good heart, lungs, kidneys, blood, etc., etc.  She’s the healthiest sick 85 year old you will ever meet.

We should get some good blog material when they start moving her around for PT!

Again, thanks for all the prayers.  They are always appreciated and needed.

2 Corinthians 1:11

“Then many will give thanks on our behalf for the gift that came to us through the prayers of many.”

Here we go again

I have to hire a new Caregiver.  Ahh… here we go again.  Our last one didn’t adapt well to change.  Besides the physical requirements of taking care of someone bedridden, I really need someone who is quiet and gentle with Momma.  I want them to be a calming influence when she moans during diaper changes.

But most importantly I want them to do what I tell them to do, exactly how I tell them to do it!  Sounds harsh, right?  I know, I know, I can’t really expect that, but wouldn’t it be great?!  I have an interview Monday with a young woman who was previously in the Army.  Now that’s what I’m talking about!  Someone who can take orders.

In the meantime we are stuck in the snow and cold here in Kentucky so I am full time caregiver for Momma.  She doesn’t notice that her old caregiver is gone.  She doesn’t notice if I am gone next door for awhile.  She doesn’t remember much other than what is happening at the exact moment you are talking to her.  Although, she does always say she is hungry!

Her Parkinson’s makes her arms and hands hurt so bad that she doesn’t feed herself much anymore.  I keep trying to let her, but the food ends up on her and the sheets, so I pretty much feed her bite size pieces.  Part of Lewy Body is the inability to remember how to swallow, so I watch as Momma chews the same piece of peanut butter toast about 100 times until I finally remind her to swallow.  It can take 30 minutes to eat breakfast.

Please pray with me that Momma’s new caregiver is the right one.  Someone who will be gentle, calm, strong, capable and kind.  That’s a tall order, but the God of the universe knit Momma together and He cares about every hair on her head, so I am leaving it in His hands.

Thank you.