The Reluctant Red Nose

Not sure how many of you have had to deal with parents with dementia. A happy day was when you are remembered. In December there was a beautiful day where Dad said my name and then when I asked him who I was he said my daughter! I then asked him who named me and he said he did! I cried! I can’t remember when he knew me and it was the best gift.

Walking him home has been one of the hardest things I’ve ever done.

Dementia is a nasty beast……it takes the ones you love and spins them with confusion but just enough sanity thet they know what they feel and think is wrong.

It’s like living in your dreams and never waking up. It’s almost impossible to know what’s real and what isn’t. Dad would have a dream about me and think I truly did these things he dreamed about and then wept with relief when he realized that they in fact did not occur.

Our family found him wandering the streets, going into peoples homes he thought were his…and falling as he would take walks alone even though we had asked him not to….

The last time I visited was the day before he turned 91…

He told me it would be soon….take care of Mom

Still, I thought I had more time…

That was the very last conversation I ever had with him….

The next time I was with him he was unconscious and I never got to talk to him again.

I will miss hearing the songs he would sing….I will miss seeing his excitement about donuts and lemon meringue pie.

I as with him Thursday and Saturday and Tuesday. Tuesday before I left I said to him….You are waiting until I leave aren’t you….and his eyebrows went up. I left at 6pm and at 11:38 pm he left this world and all the pain he has been in is gone…

When I was little….and Dad was there….I was never scared. As an adult….when Dad came and fixed it all…I was never scared….and now he is gone….and I am the one that now must keep everyone else from being scared….and I am not sure how to do it.

I miss him soo much.

We waited about a week….we worried….we cried. We talked to him, we played music and we held his hands.

Selfishly, I wanted him to wake up….I wanted him to not have Dementia anymore. I was angry because I felt robbed…we had such few moments of clarity with him.

Two weeks ago he was celebrating his 91at birthday and eating lemon meringue pie…we had a great visit….and now…it’s over.

Even though he didn’t always make sense….I still had him….i could still hear his voice….I could still hold his hand..I could still kiss the top of his head.

Tonight as I write this unable to sleep, tucked under the quilt my grandmother made and my mother gave me….I know he is happy. I know he is whole. I know his mind is restored. I know his body no longer aches.

Today I spent three hours at the funeral home. We have a huge family….and there are several decisions to be made. It was a great distraction. I had to get a haircut today and I just started crying in the middle of it. At Chic Fil a, they asked how my day was going….I lied….and said fine….what else should I say…. My Dad died…let me ruin your day as well.

Yesterday as I sat by Dad’s bedside comforted by the sound of his breathing , I wrote his tribute….his breathing changed about 4:30 and then it leveled out….I left around 5:30 or 6. Before I left I told Dad that he was going to wait until I left before he went home and his eyebrows went up…..and then five hours after I left that’s just what he did.

My family has never been great during a crisis….we are a little too dramatic….

When my first husband was killed in a car accident, Dad sat behind me for “moral” support, however, he was crying even louder and sniffling more than me….it did however create some much needed humor in a very difficult situation.

Dad has always been the softie, the gentle one, the one where we knew we were safe.

How we are going to do this and move forward I do not know….but we are going to do our best to make him proud of us…..

And yes, tomorrow is my birthday….and no, I wish it was not.

Two weeks ago my sister and I had gone to wish Dad a happy birthday. He was turning 91. He seemed in great spirits and ate every last bit of his fave lemon meringue pie. He didn’t know exactly who I was…but he really liked my name…

My sister walked away to help Mom with something and he told me it will be soon. Maybe summer . Take care of Mom. I promised him I would.

Wednesday morning I woke up with a message from my sister Dad is in hospital with a UTI and high blood pressure….but he has done this couple of times and has rallied every time…but this time sepsis was in his bloodstream and he has been unconscious ever since.

Since he is over an hour away I’ve gone twice this past week to see him and stayed all day. Someone is always with him….

My sister told him yesterday he can go…but he just isn’t ready to leave yet.

I will say that as I sat near his bedside my regrets are few….as you look at pictures it was clear they were a huge part of my life and my children’s life…and I am grateful for that.

I will not tell you for a second those visits were easy. It’s not fun when you visit and your parent doesn’t know you. Or they tell stories and you try to figure out what they were talking about…it’s emotionally draining.

Last time we were there my Ellie bawled when she said goodbye to my Dad….she sensed that would be it….and she hasn’t stopped crying.

I will write here what I told her.

We were blessed with an amazing Dad and Grandpa. we have wonderful memories of times together. I will never go fishing or camping and not think of my Dad. I won’t eat a donut or see Folgers coffee and not think of my Dad. Chevy trucks will always make me smile….KC Royals will always be who I root for I will always buy General Mills products with pride and I will always be proud of being from KCMO.

We had a Dad who rescued us when we were hurt, but gave us wings to fly. He could fix anything….he took care of us always and boy did he love to tell jokes. We were the lucky ones…and I am so very grateful!

Take the pictures….go on the visit….do not be full of regrets

This time last year I was going through radiation treatments every day….and while I wouldn’t wish that upon anyone I am proud of who I have become because of it. My husband told me I was a tough cookie…and I feel empowered by those words.

Cancer is a crap word that no one ever wants to hear…it comes in quietly and it leaves loudly and with great destruction. It doesn’t care that you were going to go to Greece. It doesn’t care that you had any plans at all…it just comes…with a terrifying swiftness…and it leaves with scars and pain and treatments and aches from medicines that you have to take for years…but all is not lost….it is just different.

Cancer decided to take my love for clowning away for awhile….I am trying to get it back…and I fear the old way of doing things is gone forever….and a new character will be emerging soon…

I believe her white face will be gone….her full character will be changed…..because that no longer feels right.

I believe as we grow older things we always did change. Most of us long for simple days…designer purses and perfect nails and hair and the latest skincare don’t matter as much. We begin purging our houses of excess. Things we do not use get tossed…the need for less becomes very real.

I find more joy in going to garden centers and thrift stores than I do for TJ Maxx. I have been to Hobby Lobby only once this year so far and that was strictly for my store.

I’m content to embroider and garden and make bread and soap….

Clowning was always my way to cope with life…but now I feel very conflicted….the old character no longer works….it feels like someone else. I go to Clown camp in August….I hope to get a fresh start and go to new heights with this new character.

This year as I put aside playing keyboard…..I have learned that quiet is not always bad….sometimes we need that in order to heal….

Just because you’ve done things a certain way….doesn’t mean you can’t change.

This weekend we went to visit the Art Department at a University my daughter wants to attend. It was lovely….and we probably found her place….but it will all be up to her.

We then went back to Bella Vista instead of taking the long way straight back home….

Bella Vista never disappoints….

But first….Springfield…..if you try….you can find beauty anywhere….

Hidden steps in a coffee shop…

Fantastic coffee that was suggested by locals….

Then we found a lovely secondhand bookstore!

Fabulous Greek restaurant….

Ellie enjoyed visiting the largest public university of art…

We then headed to Bella Vista….

Enjoyed time with family and going to the Farmers Market

Then off to another used bookstore!

I feel this healing inside of me…..

I am not the same….not worse not better….but changed.

Life is more precious…simple pleasures are more important….

I am finally popular…..at the cancer center🥴

And that’s ok….those people have been a sweet balm when I didn’t want to keep trying.

Every three months….I worry….then every six months I’m scared of what they will find….and it’s the in between that makes me the most scared most days.

But if we worry about the six months….the three months….have we lived at all?

I count the gifts….books organized by color….naps with the dogs sleeping nearby…flowers that I planted blooming. Sunny days and gorgeous flowers….new cars and coffee….baby birds in a nest on your front door…

Life is big….and overwhelming but it doesn’t have to leave you defeated….

If you are going through tough things it’s ok to laugh….take a break…enjoy life.

Life is a precious gift

Last week we headed to Bella Vista to be with family for Easter.

It was lovely relaxing and enjoying one another. Rain did not let up until Monday….insuring an amazing sight at the falls the next day.

This past weekend we spent visiting Dad for his birthday….

I do not expect to share another birthday with him….and I am not sure how I will deal with that….but for now….I want you to know….I had the best childhood and my Dad is better than yours.

For now…we will keep walking him home….grateful for all he taught us.

Today I went to my oncologist. I go every three months. He likes my labs done and he pays close attention to my liver etc. I’m doing hormone therapy and am on another drug because of the cancer drug preventer I am on.

I also see my surgeon and my Radiation Oncologist but only usually once a year.

Right now I am doing good….I am not sad….but my heart hurts….my parents are both in Retirement Homes. My father is not doing well and I am simply overwhelmed at living life without him. I am also irrationally mad because I feel we were all cheated. I didn’t know the last time he said my name and looked at me with recognition would be my last time. I didn’t know coffee and donuts and conversation would be my last. I didn’t know his April birthday where we ate cake together would be out last. I simply did not know.

I go through pictures and memories..::run my fingers through the grass….as I mulch my back flower garden I have a place where my pink bike and the door to my playhouse is in the flower garden. I regret nothing from my childhood my father did for me.

I can smell the inside of his lunchbox….the hard leather red and black plaid seat, the smell of aftershave and the sound of his Chevy truck. I can hear the silly songs and how his arm would be browner because he put it out the window and drove with the other.

I can still see his arm come across me as he had to brake hard….always there to catch me.

Now my phone rings several times a day as my Mother calls two of my sisters and I sometimes upwards to 12 times each. She’s confused….she doesn’t know why she is in a home….and begs us all to come get her….but there is no peace I can give her….she is in the safest place ….and those are words I have to say to myself daily.

Sometimes she says hateful words that she would never say to us if she was of her right mind…but she isn’t….and this is how it is.

I have made peace….but it still hurts. The suffering of watching your parents as their minds suffer is something I would never wish on the worst enemy.

My soul is sad…I laugh….I cry…but I am tired of hearing the word cancer and skin cancer and surgery.

My heart aches with the pain of this world and this life…

I know that heaven waits for me…I know that someday all tears will be wiped away and death will no longer win….but today….

I…..am….tired.

For now….I throw myself into reading….

And embroidery….

I love watching my daughter grow up….

Love being in nature

But I have no energy for clowning….

I know healing will come…and I pray that one day my red nose will feel right n my face again…but for now….

I will keep trying.

For the last several weeks my Dad has been in and out of the hospital. He has been very close to death, but has rallied every time. I think he is holding on for my Mom…but he is weak and I am not sure how much longer he can do that.

Last Saturday I drove to Chillicothe to see him. He did not converse with me or my Mom…he slept the entire time only asking me for water.

My Dad has battled Dementia for several years….i feel cheated…and feel that when he does pass it is not that we lost him once but that we lost him twice.

Here are a few things you should know about my Dad:

There was no one more faithful to his wife and daughters.

He has been with my Mother since they were 17. The sun rises and sets on her in my Father’s eyes.

When someone would hurt our feelings or our hearts, Dad would always rescue us. There is no place I felt safer.

My Dad was funny. It’s where I get my sense of humor. He would sing silly songs. He always had a joke…and he always let me win races but made it look like I really did win.

My Dad was fearless….if there was danger…he ran right to it to confront it.

My dad loves the outdoors. He took us fishing and camping and canoeing and walks in the woods. He chopped wood , he took me on rides on his motorcycle. He loved horses and dogs…he had the biggest strongest hands.

He took pride in our home, could build anything…he never quit working.

When my world fell apart he helped me pick up the pieces. He taught me to be brave, not me to work hard….and never give up.

He helped me learn how to fly again after my wings had been broken by another.

His absence will be felt for the rest of my life

I am so grateful to have had an amazing Dad!

Two weeks ago we headed to DC to see our adult children. Upon our return my Dads health has been failing and we are just now home from the hospital for my husbands surgery. He is doing better but I believe recovery will not be as quick as he would like. As far as my Dad that is for a different blog post….I am still not ready to talk about that.

We had planned this trip in order to see the cherry blossoms and it did not disappoint. We were there a week earlier than peak but we still enjoyed it! We also went on a rainy day which I suggest because it cuts down on the crowd. We saw this on the Monday before we left…so about five days before peak.

My eldest stepdaughter and her husband live in Bethesda so we spent the most time there. Our son lives in DC but works in Alexandria so we spent time there.

We found a beautiful coffee shop that we visited every morning in Bethesda

The first full day we were there we took a hike, where we were able to see:

We ate at wonderful restaurants….here are a few:

We also visited Mount Vernon

We also went to the Museum of National History

Definitely one of our faves

We also saw a lot of art…my Ellie loves art.

I really enjoyed Alexandria….such a cute town.

It was sad when we had to leave….

We are very blessed and so enjoyed our time!

We have been trying to get away to Eureka Springs for two months. We have had to postpone the trip three times.

The cabin was lovely….I so enjoyed the heart shaped tub.

We ordered a charcuterie board and it was fabulous!

We ate amazing breakfast!

Had fabulous dinner….

Some fabulous shopping…

We throughly enjoyed our time! Eureka is amazing!