Day 31 - The Journey's End

The journey – with its long and winding roads; its detours, u-turns and road blocks; its mountain highs and valley lows; its horizons so far in the distance – the journey’s end is yet to be seen.  The journey with Dementia’s Demands will continue as my husband and I look to the future and whatever that means for us.  We’ll continue that long and winding road, keeping our eyes on the One who is able to guide us through the rough spots!  Even those rough spots that come unexpectedly – those we were “Unprepared” for – (see Day 30 post which replaced today's - I had to get those words written and decided to share them for the 30th instead of waiting).

“Stuck in traffic and stressed?  Relax, God will get you there.  Just slow down and let Him take control ...!”  (From “Just Breathe!” a Daymaker inspirational gift).

But, this journey with Write31Days has come to an end – yet with the end comes a real beginning!  A beginning of writing a blog that has helped me more than I could have ever imagined it would.  A beginning of friendships I would not have made had I not joined this group of “31 Dayers” who have given so much advice and encouragement, inspiration and positive outlooks, support from all around the country and the world!

While I may not post something every day – I do plan to continue to write about our journey…so, come along – the journey is so much more fun with others along for the ride!

FMF - LEAVE

TGIF!  Thank goodness it's Friday!!!  And time to join a great group of bloggers for the Five Minute Fridays challenge...on Thursday evening we receive a word and write for five minutes - without thinking about it or any editing.  Try it sometime, it really is challenging! Five Minute Friday

So - today's word is "LEAVE" - and here goes my post...


I will never LEAVE you or forsake you...but I want to LEAVE and not have to deal with this anymore.  No, I don't want to LEAVE this life or this earth and go home; I know I have already talked about that in my Write 31 series...what I want is to LEAVE and be alone for a while to get my head together as to what it is I need to do; what it is I want to do...I want to walk on the beach and feel the sand beneath my toes and watch the ocean as it moves in and out.  I want to lie in the shade of a tree and read a book.  I want to sit down and scrapbook all the pictures I can in one day.  I want to LEAVE a legacy of photos in books that my children and grandchildren would be proud to share with others.  I want to LEAVE this apartment and just drive until I come to a place where I can stop, turn around and return home with a better attitude; a kinder self that will be better able to take care of someone who has lost parts of his memory; someone who depends on me for so much..I want to LEAVE but I will stay...

Day 30 - Unprepared

I am changing what I had previously planned to post today.  A trip to the doctor for my check up and I felt the need to write something else…

The thing about going to the doctor is you can usually predict what he is going to say:  “Your blood sugar is too high; you are over-weight, obese; you need to lose weight; you need to walk at least a mile every day; you need to be on a 1000 calorie diet (what?!)  You need to…”  These things I knew he would bring to my attention, as he does every time I have a doctor’s visit…I KNOW these things and I really want to lose weight and get healthier!  I have been under so much stress the past few years – losing a job; finding another job; being laid off; health issues (me); health issues (hubby); financial worries… I know, all excuses to why I haven’t taken more control of my health and my life!!  I know that I should be taking care of myself so I will be healthy enough to take care of hubby…really?!

So, what I was not prepared to hear today was when I mentioned to the doctor that my husband’s memory seemed to be getting worse – and reminded him that he had previously been diagnosed with Vascular dementia because this is not the same doctor he was seeing when we received the diagnosis; in fact, there have been several doctor changes due to insurance and staying in the network of doctors!  What I truly was not prepared to hear the doctor say is:  “It could be Alzheimer’s disease, you know that?”

Of course I know that!  I have been sharing for almost 31 days – Dementia’s Demands!  Of course I know…NO!  I do not want to hear that it could be Alzheimer’s disease.  I have been on a journey with a dementia that would not get worse; one that was caused by small strokes that affected the memory.  The memory we can work with; we can do things to help remember – write things down, use a calendar and write important dates to remember, etc.  

I also know that Vascular dementia and Alzheimer’s disease could go hand in hand – which means there must have been other small strokes that we didn’t know about; more damage to the brain, right?  I don’t know!  What I do know is that it is a possibility – and so the journey of Dementia’s Demands continues with yet another “bump in the road” and possibly a new diagnosis?!

Day 29 - Keep Going

Did you ever start a project that became more and more overwhelming as the minutes passed – or the hours or the days or the weeks…?  Did you ever feel like just giving up – not continuing the journey?  I must admit I have had times like that and am working through a decision at this time.

I had my doubts about writing EVERY DAY for 31 Days!  I didn’t think I would actually accomplish it…writing for all those days!  Did I have the information I needed to post for that length of time?  Did I have the time to write a blog and post every day?  Well, the end is in sight and I am prepared for the final two days!  GOAL ALMOST ACCOMPLISHED!  (Please know this is not meant to be judgmental if you were not able to complete all 31 posts; this is how my personal journey was).

So…what about that one decision I am trying to work through?  If I can write on a single topic every day for 31 days, why is it I cannot stay focused on an online course that will prepare me to work another tax season?  What is holding me back?  Am I having doubts about why I even bother to try?  I know in my mind that the “extra” income will be a big help to our finances; so why?  What is standing in my way?

Proverbs 3:5-6 says:  “Trust in the Lord with all your heart; do not depend on your own understanding.  Seek His will in ALL you do, and He will direct your paths.”  (I added the caps and bold on the word ALL for emphasis on the fact that we should seek His will in ALL…).

I know should not depend on myself, my own understanding; I should trust in the Lord.  I should seek His will in these choices I am attempting to make – on my own!  I should ask these questions of HIM rather than myself!

In Chapter 1 of the book “You’ll Get Through This”, Max Lucado says:  “You’ll get through this.  You fear you won’t.  We all do.  We fear that the depression will never lift, the yelling will never stop, the pain will never leave.  Here in the pits, surrounded by steep walls and angry brothers, we wonder, will this gray sky ever brighten?  This load ever lighten?  We feel stuck, trapped, locked in.  Pre-destined for failure.  Will we ever exit this pit?”  (The reference to the “pit” and “brothers” is to Joseph who was “favored by his father but hated by his brothers” in Genesis 37:3-4; and was sold into slavery in Genesis 37:12-36).

And in Chapter 6 of “You’ll Get Through This”, Max Lucado says:  “…What if you give up?  Lose faith?  Walk away?  Don’t.  For heaven’s sake, don’t.  All of heaven is warring on your behalf.  Above and around you at this very instant, God’s messengers are at work…Keep waiting.”

And to that I say…Keep Going!  Keep Writing!  Keep Learning!  Keep Doing…whatever it is that you feared you would not accomplish.  Because:

“Those who wait on the Lord shall renew their strength; they shall mount up with wings like eagles, they shall run and not be weary, they shall walk and not faint.”  (Isa. 40:31).

Once we have renewed our strength and had that little rest, taken that much-needed break – we can proceed with completing those projects that we once thought of giving up!  And what of that "project", that one "decision" I need to resolve?  Well, I am waiting on the Lord to lead me in that direction...waiting patiently for His Word!

My hope for your future is a “brighter tomorrow”:

HOPE FOR THE FUTURE

The dark gray clouds slowly parted,

and the sun’s light shone through;

the rays spreading out over the city --

and the place where I was headed.

The certainty of the future

shining though the darkness of life.

In the darkest hour -- the deepest despair --

God brings sunshine out of the clouds...

And hope for a brighter tomorrow!

(Originally written 5/98)

Day 28 - Dementia, I Hate You!

Today, through poetry, I will share how dementia appears from two perspectives.  The first is written by one who sees dementia in a loved one; and the other is written by one who is living with dementia.  Credit is given to each author at the end of their poetry…

DEMENTIA – I HATE YOU

Dementia – I hate you!

I hate what you’ve robbed from me

I hate that you dictate my day

I hate that you’ve made me a stranger

I hate that you’ve made me the enemy

I hate that you’ve made me cry

I hate that you’ve made me laugh

I hate you!

Dementia – you enrage me!

You make me lose my temper

You make me feel out of control

You make we want to scream

You make me want to punch

You make me want to kick

You make me want to fight

You enrage me!

Dementia – you terrify me!

I’m terrified of the future

I’m terrified who’ll be next

I’m terrified I will be next

I’m terrified I will forget my children

I’m terrified my children may forget also

I’m terrified there’ll never be a cure

You terrify me!

Dementia – you cause me despair!

You took my innocence

When you took my Grandma

You took my strength

When you took my Father

You’re taking my heart

As you steal her away

You cause me despair.

(by Traci Story; to connect to Lewy Body Dementia Association click here)

Will This Nightmare Ever End?

Crumbling walls within my brain

Distant memories call my name,

Different days yet still the same

Will this nightmare, ever end?

Not quite sure, what is real,

Forgetting how to eat a meal,

Desperation is what I feel,

Will this nightmare, ever end?

All I want is to be Alive,

I feel so old at Fifty Five,

My old age I want to see

Will this Nightmare, ever end?

And so I walk with my illness

Hand in hand, my life amiss,

Waiting for Cure’s elusive kiss

Will this Nightmare, never end?

Until that day, a cure is found,

You will always hear my sound,

Of defiance and hope abound,

Until my Nightmare ends.

 (Written by  Norrms Mc Namara who was diagnosed with dementia at age 50.

Read more of Norrms poetry here)

Day 27 - "Find Your Tribe"

Today I will be sharing ways I found that helped me cope during our journey with Dementia’s Demands.  Just as there are many reasons we would need to “cope”, there are many ways to cope!  And what works for me may not work for someone else.

The title of today’s post is taken from a quote by Jennifer Pastiloff found on the Lewy Body Dementia Association website, and shared by a friend whose husband died from this form of dementia.   The quote touches on my number one way that I am able to cope:

“Find your Tribe.  You know, the ones that make you feel the most you.  The ones that lift you up and help you remember who you really are.  The ones that remind you that a blip in the road is just that, a blip; and not to mistake it for an earthquake, and even if it were to be an earthquake, they’d be there with the Earthquake Emergency Supply Kit.  They are the ones that, when you walk out of a room, they make you feel like a better person than when you walked in.  They are the ones that, even if you don’t see them face to face as often as you’d like, you see them heart to heart.  You know, that kind of Tribe?”

1.  Find Your Tribe – It is very important for me to be a part of a group that I can share my feelings with; that understand me and what I am going through; that I can laugh and play and share and cry with; that I can just “be me” with!  That is my source – my group – my people - my “Tribe”.  My “Tribe(s)” consist of Church, Choir, Women’s Fellowship Group, Sunday Lunch Bunch (who are parts of each of the previous groups!), Family, Scrappin' Friends, AND my new friends - The 31 Dayers!  What would your tribe look like?

2.  Reading – I love to read and take advantage of reading just about anything that interests me!  Most of the time I am reading Nicholas Sparks, Nora Roberts, Deborah Raney, Danielle Steel and others that sound like a good read.  I also found help with our journey by reading self-help books.  The best and most helpful book for me has been “The 36-Hour Day” by Nancy L. Mace, MA, and Peter V. Rabins, MD, MPH, which I have quoted from often in the past 26 days!

3.  Writing – I mainly write in my journal (not necessarily every day), but I have also typed out some of the information I used to write in this blog, such as "The Broken Pencil"and "A Stranger in my Home".  I have also written few poems that were shared earlier (see Crying Out to God which incorporates both “Silent Cries” and “Where are you God?”).

4.  Scrapbooking – I love to “make memories” as we enjoy family time, and take a lot of photos to document those special times.  Putting them together in a scrapbook helps to preserve those memories.  Here are two of my grandsons on a “dinosaur” that is located in front of a children’s consignment store, and one with all five of my grand children in front of a special candy store:

Dinosaur Fun

5 Grands at Sweet Pete's

5.  Music – I love all types of music and listen to the radio every time I am in the car; why I don’t turn it on at home is because of the TV blaring most days…some of my most inspirational times (alone) are hearing a favorite song on the Christian radio station I listen to most often!  Although there are many songs that inspire, I want to share one favorite that has meant a lot to me during this journey:

What more can I say?  We cope – and we all cope in different ways.  Mine may not be your way; and yours may not be mine.  But sharing my journey on this blog has been helpful; and I have learned that comfort in knowing:  “For You are who You are no matter where I am; and every tear I’ve cried You hold in Your hand; You never left my side…”

Day 26 - God Says...

Philippians 4:6-7 - New International Version

6 Do not be anxious about anything, but in everything by prayer and petition, with thanksgiving, present your requests to God.  7 And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.


I Corinthians 13:4-7, 13

4 Love is patient and kind.  Love is not jealous or boastful or proud, 5 or rude.  It does not demand its own way.  It is not irritable, and it keeps no record of being wronged.  6 It does not rejoice about injustice but rejoices whenever the truth wins out.  7 Love never gives up, never loses faith, is always hopeful, and endures through every circumstance.
13 Three things will last forever - faith, hope, and love - and the greatest of these is love.

One day, when I was upset during work, a co-worker was comforting me and reminded me that I was God’s child and He was always with me.  She suggested I recite the 23^rd Psalm whenever I found myself in doubt.  Her words reminded me of a devotion was taken from “Psalms Now” by Leslie Brant also using the 23^rd Psalm – instead of reciting it as written, we were encouraged to insert our name in certain places, as printed below:


“The Lord is Barbara’s constant companion.  There is no need that He cannot fulfill.  Whether His course for Barbara points to mountaintops of glorious ecstasy, or to the valleys of human suffering, He is by Barbara’s side.  He is ever present with Barbara.  He is close beside Barbara.  When Barbara treads the dark streets of danger, and even when Barbara flirts with death itself, He will not leave Barbara.  When the pain is severe, He is near to comfort Barbara, when the burden is heavy, He is there to lean upon.  When depression darkens Barbara’s soul, He touches her with eternal joy.  When Barbara feels empty and alone, He fills the aching vacuum with His power.  Barbara’s security is in His promise to be near to Barbara and in the knowledge that He will never let Barbara go.”

How awesome!  How wonderfully awesome!!

Whatever you may be going through in your life’s journey, I challenge you to recite the above 23^rd Psalm inserting your name!

These are three scriptures that are among my favorites.  There are many scriptures that are comforting in times of need.  Maybe a different one touches you or comforts you in your times of need…please share your favorite(s)!

Day 25 - Care for the Caregiver

As a caregiver, you must make sure to take care of yourself!  I can't be much clearer than that; but let me share the first paragraph from Chapter 13 "Caring for Yourself" in the book, "The 36-Hour day":

1 "The well-being of the person who has dementia (or, I might add, any other illness) depends directly on your well-being.  It is essential that you find ways to care for yourself so that you will not exhaust your own emotional and physical resources."

The Caregivers Action Network lists 10 Tips for Family Caregivers ²

  1.     Seek support from other caregivers.  You are not alone! 

 2.      Take care of your own health so you can be strong enough to take care of your loved one.

 3.      Accept offers of help and suggest specific things people can do to help you. 

 4.       Learn how to communicate effectively with doctors. 

 5.       Make sure legal documents are in order.

 6.       Give yourself credit for doing the best you can in one of the toughest jobs there is!

 7.       Be open to new technologies that can help you care for your loved one. 

 8.       Organize medical information so it's up to date and easy to find.

 9.       Make sure legal documents are in order.

10.    Give yourself credit for doing the best you can in one of the toughest jobs there is!

While the above list is helpful, it is by no means all-inclusive.  There are many ways to take care of you – and I feel this list addresses many of them.  Personally, I have learned a lot while writing this series; and have connected with other caregivers as well.  I know that I need to address several of the above tips – such as numbers 3, 8 and 9, to insure I am cared for and things are in order in case someone else has to step in to help.  I am constantly learning new things as I continue on this journey of “Dementia’s Demands”.

I highly recommend the book that I have been referring to in my posts – “The 36-Hour Day”.  It has been a great resource to me over the years (the Fifth Edition that have is the second of this informative book that I have purchased).   The book has answered many questions for me – long before I started searching for additional information online.

If nothing else is learned from today’s post, I hope you, as a Caregiver, have learned that it is essential to take care of YOU!

1 The 36-Hour Day by Nancy L. Mace, MA, and Peter V. Rabins, MD, MPH, Fifth Edition

2 Caregiver Action Network - CAN - click here

Day 24 - How Caring for Others Affects YOU

The Caregiver Space

What exactly is a Caregiver?  Let’s take a quick look at the definition from a couple of different sources:

 Miller-Keane Encyclopedia and Dictionary of Medicine, Nursing, and Allied Health, Seventh Edition. © 2003 by Saunders, an imprint of Elsevier, Inc. All rights reserved. Click here to go to Miller-Keane.

"A lay individual who assumes responsibility for the physical and emotional needs of another who is incapable of self-care."


Modern Language Association (MLA): "caregiver.:  Dictionary.com Unabridged.  Random House, Inc. 23 Oct. 2014. Click here to go to Dictionary.com.

1.  "A person who cares for someone who is sick or disabled."
2.  "An adult who cares for an infant or child."

It is rather comical, I think, that the second definition indicates caring for an infant or child! Some days I feel as if I am caring for a 75-year old "toddler" ... and perhaps the person we are caring for is more childish than adult-ish in their actions!

As a caregiver we may experience many emotions, including (but not limited to) anger, guilt, discouragement, loneliness, sadness, frustration, depression, etc.  Each person's situation is different; some may have these feelings while others may not, and they may come in varying degrees at different times.

Our feelings may become mixed as to how we really feel about the person with dementia, or whatever their disease may be.  Many times I find myself wondering, "Why did I marry this person?" or "Do I still even love him?" or even "Why can't I find happiness in my life?"

We may also worry about what other people may think of our situation.  Others just don't understand it like you do, do they?  I have shared some of our "incidents"  with others who would look puzzled - they just don't "get it"!  Or they respond with "Oh, yeah.  My husband has selective hearing, too - (ha-ha)" when my husband has a real hearing problem!  It just seems so - like nothing is really wrong - right?!  But you know there really is something wrong!

There may be times when you are so embarrassed by the person you are caring for... that you just want to run away and hide!  My husband can act so much like a child, especially in the grocery store (see my reference above to my "75-year old 'toddler'") when he keeps wanting to add stuff to the cart - cookies and pies and munchies; not real food!  And, he usually just makes a face, fusses a bit - and then goes on as if nothing had happened.

I am not worried about what others may think anyway!  I know what the situation is and I am handling it as best as I know how!  I have let our neighbors know that my husband has a hearing problem as well as dementia and problems with his memory so they are aware of the issues that may appear "odd".  In most cases, they had already figure it out.

Now, if you are a "believer" - a religious person, or whatever word you put to your faith - there may be feelings of anger at God for allowing such a thing to happen.  "Why, God?  Why me?  Why us?"

These words from Psalm 22:1-2 let us know we are not alone in our cries to God:  "My God, my God, why have you forsaken me?  Why are you so far from saving me, so far from the words of my groaning?  O my God, I cry out by day, but you do not answer, by night, and am not silent."  Not only did David the psalmist cry out to God, but these very words were spoken by Jesus as he was hanging on the cross.

My friends, these feelings are normal and you should not let anyone make you feel guilty for your feelings.  But do not hold them inside!  Talk honestly with your minister, priest, or rabbi, or even a professional counselor to share your feelings.

There are also online resources, if you prefer to share anonymously...just share those feelings - and don't try to do everything on your own!  Tomorrow I will give some basics in "Caring for the Caregiver - YOU".

Silent Cries

SILENT CRIES

I cried in the evening;

But no one saw my pain;

No one saw the anguish

In my heart.

I cried in the night;

But no one heard my suffering;

No one heard

The silent cries of pain.

I cried in the morning;

But -

The sounds of laughter;

the sounds of joy;

the sounds of love -

Overshadowed my pain and suffering;

And replaced them with

Laughter!

And Happiness!

And Joy!

And Love!

... And Peace!

(originally written November 17, 1991)

A Romanian Prayer (translated)

The following is a Romanian prayer written as a poem by priest Arsenie Boca and shared by  a fellow blogger, "lettersformysoulmate" who translated it:

Oh, Lord, forgive my many prayers
Asking You only for bread, security and wonders,
For I have often done from Thee my servant
I do not listen You, but You of what I say,
Instead of wishing, Lord, to be your will
I always ask You to do mine.
I ask You to banish grief, to not send me what You want
And to serve me in all, to give me without asking in return,
Thinking that if I sang and pray to You,
I have the right to ask You for all I want.
Oh, forgive my crazy way of praying,
And teach me how otherwise to stand before Thee.
Not just asking from You, like You were my servant,
But You asking from me, and the servant to be me.
To understand that the best way to pray
It's to wish Your will in all.

The prayer rhymes beautifully in Romanian; sure wish I knew that language to read the beauty of the rhyme.

Day 23 - The Rainbow

Last night on the way home, I drove in light rain; it was mostly splashes from the street and other vehicles, but a light rain.  And the sun was shining, with the gray clouds scattered above, and ...

The beauty of it all in that short moment made me cry.  But, the tears only reflected my feelings of inadequacy and aloneness – but also gave me the assurance that there is One much greater than I.  His promise to me is that He’ll always be there to guide me through it all.  Right now, as usual, I need that assurance.

Things are going crazy at home again.  I just don’t know what to do!  We know what the medical problem is, but the complaining, confusion, arguing all continues.  And, the fact that he will not accept the medical problem that has been diagnosed by a doctor makes life even harder!  His response: “There’s nothing wrong with me.  It’s all in your head!”

So, I look back to that beautiful rainbow and try to hold onto the assurance that God is here through it all!  His Word tells us not to be anxious about anything; not to worry about anything!  We (I) only need to pray thanking God that He will supply all my needs.

Knowing that God is there to take the worry away is easy in saying, in knowing; but we (I) so easily forget this.  I worry needlessly about things because I feel I am in this alone.  If I don’t do it, who will?  But, God tells me I should not worry or be anxious because I am not in this alone!  He is and will always be there to lead, to guide, to walk beside me.  His Word says so; I believe this – but why is it so hard to let go of this worry?

Matt 6:27

Can all your worries add a single moment to your life?

Matt 6:34

“So don’t worry about tomorrow, for tomorrow will bring its own worries. Today’s trouble is enough for today.