Tag Archive | Patience

A River of Hope

waterfall

On some days

the cold rains don’t stop

 

A stormy torrent 

of pains

colliding

with hard rocks.

 

I cling to Your grace

and Your cross

a little tighter

My knuckles are raw

I am a fighter

 

You are my sturdy boat

keeping my head held up

and my life afloat

I hear you gently say,

“Keep your eyes on me”

“Don’t be afraid”

 

And I do believe

that with You

I can be free

 

No matter the day

where or when,

I see….

 

Your saving hope

will always 

stay

with me.

“Walk on the Water”

You look around, staring back at you
Another wave of doubt, will it pull you under? You wonder
What if I’m overtaken? What if I never make it?
What if no one’s there? Will You hear my prayer?

When you take that first step into the unknown
You know that He won’t let you go

So what are you waiting for? What do you have to lose?
Your insecurities, they try to hold to you
But you know you’re made for more, so don’t be afraid to move
Your faith is all it takes, and you can walk on the water, too

So get out, and let your fear fall to the ground
No time to waste, don’t wait, and don’t you turn around and miss out
Everything you were made for, I know you’re not sure
So you play it safe, you try to run away

If you take that first step into the unknown
He won’t let you go

So what are you waiting for? What do you have to lose?
Your insecurities, they try to hold to you
But you know you’re made for more, so don’t be afraid to move
Your faith is all it takes, and you can walk on the water, too

Step out, even when it’s storming
Step out, even when you’re broken
Step out, even when your heart is telling you
Telling you to give up

Step out, when your hope is stolen
Step out, you can’t see where you’re going
You don’t have to be afraid
So what are you waiting, what are you waiting for?

So what are you waiting for? What do you have to lose?
Your insecurities try to hold to you
You know you’re made for more, so don’t be afraid to move
Your faith is all it takes, and you can walk on the water
Walk on the water, too

The Long Goodbye…

I love poetry. I love it for its simplicity and depth. I love rhyme, metaphor, and alliteration. So often, poetry can capture thoughts and emotions that other types of writing can not. I love the idea of using just a few words to say so much.

Dementia is often called “The Long Goodbye”. That is because hour by hour, day by day, month by month, and year by year, we watch our loved ones with dementia very slowly fade away before our eyes. There are so many moments of letting go, deep grief, and also countless opportunities to embrace the “now” of those moments. A person with dementia primarily lives in the present moment. They have no choice. They can not remember specific experiences from the past, and when they do, they often get the realities of those moments confused or misplaced. Sometimes, the act of remembering hurts them, as they forget long-held, precious memories. On the other hand, not remembering certain painful moments can be a nice relief. I wrote this poem a few nights ago.

The Long Goodbye

You reach out

your frail hand

unsure

alone

on this unforgiving,

precarious land.

 

Wishing you had built

on sturdy rocks,

instead of unsteady

sinking sand.

 

Your synapses

fire at random.

At times, there is sense.

We never know what

we will get.

 

Your illusions

confuse you

“Is Nana still alive?”

“Did we have a funeral?”

“Did Bapa go before her?”

 

I answer the best I can.

“Nana passed 12 years ago, mom.

She had a beautiful funeral.

I spoke part of her eulogy.”

“You did?”

You seemed surprised by this.

I wonder why.

 

I will hold tight

to this frail

hand and mind.

Leading, as I try,

through the darkness,

on a road slowly fading,

a bitter-sweet journey

The Long Goodbye…

The following clip is of Bono, the lead singer from U2, reciting a poem titled “The Mother of God” written by William Butler Yeats. It is beautiful.

 

 

 

 

Somebody’s Baby

I wait for weeks,

months,

to fill out your annual guardianship renewal forms.

Almost to the point

where I’m forced back to court

for you.

Avoiding the hurt and the official proof

of just where

all of your dark desires

have brought us to.

 

I don’t give you a copy.

Maybe I should, but I don’t.

Because I know you won’t understand.

 

Somedays I feel stuck in this mud

of thick, dark

suffocating despair.

Wondering where we would be

if you had just held on

to the hands

reaching out to help.

 

But then I crawl up

and remember all that I have gained

despite all of the darkness.

 

I cling to His promises of

Hope

Comfort

Love

Mercy

All of which can never be taken from me…….for they are eternal……

“Do not abandon yourself to despair.

 We are an Easter people,

and Hallelujah is our song!”

~Blessed John Paul II

]

 

Groundhog Day and My Mom’s Birthday

Last week was Groundhog Day, which always falls on the day before my mother’s birthday. Dealing with Dementia feels a lot like you have stepped into the movie,”Groundhog Day”, which is a funny movie about a guy who repeats the same day over and over again. Sometimes I try new lines in the old conversations with my mom just to mix things up a little. But most of the time I repeat the old lines, because I know familiarity brings comfort to her. I wanted to give you a glimpse into a day of what dealing with Dementia looks like. This was my visit with my mom today, and some of what we talked about are among the top 3 conversations that we have on a regular basis. The words in parentheses were things that I thought out in my head, and were not actually said. Although, believe me,I would like to say them at times!

Conversation # 1.

Mom:  “When am I going to get out of here?”

Me: “Well, mom, you know we need to wait until your legs get stronger so that you can walk on your own.”

Mom: “Well, I was doing physical therapy and now they don’t give me that anymore, do you know why?”

Me: “Well, they seem to think that if you would practice walking with the walker more often to meal times, that this could greatly improve your walking. So why don’t you give that a try more?” “Physical therapy is $100 a week (on top of the $8,000 a month that it costs for you to live here) and they don’t seem to think that it does anything positive to get you closer to being able to walk again.”

Mom: “Did you tell them to cancel that?” Because that was none of your business, and I want you to tell them to start it again because I want to walk again someday.”(I am strongly tempted here to tell her that, actually, IT IS MY BUSINESS BECAUSE I AM YOUR LEGAL GUARDIAN and YOUR DAUGHTER, WHO HAS LOVINGLY CARED FOR YOU FOR MOST OF YOUR ADULT LIFE)

Me: “OK, mom, I will talk with them, OK? (therapeutic fibbing here, which is a dementia term that means you tell them what they want to hear, so you can “meet them where they are at”)

Conversation #2

Mom: “Aren’t those flowers just gorgeous over there?”

Me: “Yes, they are! I gave them to you last week for your birthday!”

Mom: “Oh, that’s right, it was my birthday, wasn’t it? Those flowers are beautiful, and your brother gave me the most beautiful outfit that he said he picked out himself!” (yes, I know you have told me and shown it to me 5 times already!) I think that he is making up for his father’s behavior.”

Me: “Well, maybe, but I think that it’s just because that he loves you a lot.”

Conversation # 3

Mom: “Did you know that your father left me? Can you believe that?”

Me:. “Yes, mom, he left about 5 years ago now.”

Mom: “No….it hasn’t been that long, it’s only been about 2 years”

Me: “No, mom, actually it has been about 5 years or so since dad left. Do you know why he left?”

Mom: “If you say it is because of my drinking, then I am going to bop you one.” (well, then I guess you can bop me one then) (I am silent here, and just stare at her) Because, you know I remember the day that I decided to stop, and it was one day I was doing the dishes (interesting, I haven’t heard this one before), and I thought to myself, “I just don’t need to do that anymore, so I just won’t do it. It wasn’t because I went to AA (because you never actually did?) or Hazleton or anything, I just knew I didn’t need it anymore.” (UH HUH….and pigs can fly now?)

With this tired conversation, I usually switch the subject, because typically my kids around, and it’s just not “kid friendly conversation” you know what I mean?

Conversation # 4

Me: “So I have been thinking I want to surprise Eric and get a dog this spring.” (I tell her all about a breed I talked to a pet shop worker about and how much the kids want one)

Mom: “Oh, that would be so fun for the kids! We had Benny (our awesome St. Bernard) before you were born! And we loved having dogs with young kids!

(Here, we have a great conversation about the past with our old dog Benny, who was the best dog in the world.)

Mom (5 minutes later): “So, when are you going to get a dog?” (SIGH) (I pretty much repeat the whole last 5 minutes) (my experience with working with young kids comes in handy with this disease!)

Conversation #5

Me: “Well, mom, I need to get going…I have a therapist appointment (where we mostly talk about you over and over and over again)

Mom: “Oh…does that help you?” Tell your therapist that your dad left your mom and she would like to know what she can do about it.”

Me: “Well, She (me) TRIED to get you to go to Mass with me today, down your hall in the chapel, and you wouldn’t go…so she (me) is working on it!” (this is where I think, “God, you sure want me to persevere don’t you?….oh, and develop my patience!” I’m workin’ on it!)

Mom: “Oh…I know, I just didn’t want to, I just don’t feel good! But, thanks so much for coming…and next time bring the kids. You know, most grand parents don’t enjoy their young grand children as much as I do.”

Me: “I know, mom, you adore them, and they adore you, and so do I (I kiss her and give her a hug) “Good bye, love you, I will see you in a few days!” (Which will be on Sunday)

Hope in Waiting

All of us are waiting for something. Right now, someone may be anxiously waiting for an anticipated job offer, or for a long-awaited medical test result. Or perhaps, someone is joyfully waiting for a child to be born, or sadly waiting for a loved one to peacefully die.

I think of Mary, the Blessed Mother of God, who is the ultimate example for how to endure deep fears, doubts, and pains, while waiting with a completely grace filled heart. She consistently put her complete trust and hope in God for leading her and her family through their trials and darkness. This hope was rooted in a promise. It sustained her and gave her tremendous courage, which allowed her and Joseph to wait patiently.

 In his book, “Finding My Way Home”, Henri Nouwen talks about the secret to waiting. He says,

“If we wait in the conviction that a seed has been planted and that something has already begun it changes the way we wait. Active waiting implies being fully present to the moment with the conviction that something is happening where we are and that we want to be present to it. ”

 “A waiting person is a patient person. The word “patient” implies the willingness to stay where we are and live the situation out to the full in the belief that something hidden there will manifest itself to us….Waiting, then is not passive. It involves nurturing the growth of something growing within.”

Like Mary, we can sometimes get frightened when our waiting becomes hard to bear. Yet, our faith helps us to realize that we need not wait in this darkness all alone. We have the everlasting bright light of Christ to guide us and keep us focused on His promises. We have the gift of community with our close friends and family, who sustain us with their friendship and love.

I waited for more than 20 years for my mother to fully love herself and choose sobriety, until her body inevitably began to give out on her about 10 years ago, when she was in her mid-late 50’s. It began with multiple broken bones (the dog was always to blame from her “tripping” over him).  Then it was  Gull Bladder surgery, Colitis, Pancreatitis, Osteoporosis, bleeding on the brain (twice), Hydrocephalus (with brain surgery to have a shunt placed), Dementia, 2 broken hips, and now Kidney failure.

For most of that time, I struggled with waiting with hope. I desperately tried to trust that God was leading our family towards healing. The problem was, I held on to tightly to what my vision was of what that healing should look like. I held on to the false notion that I could control certain situations that were very much beyond my control.

It is only within the last 6 or so years, that I have begun to more deeply understand what this surrender of trust truly looks like. I have slowly come to see that God never takes us where He cannot lead us through, and that there are very large lessons and spiritual gifts to be gained within our painful journeys.

I have learned what true forgiveness requires, and how to practice compassion despite my deep fears, anger, and anxieties. I have learned how to have obedience seeped in love. A love for my mother, who was and is a close friend, and who gave me life. I have learned that I will never stop learning, and that is a beautiful thing.

This Advent, I focus on the hope that my trust in God’s promises will allow Him to dwell in my heart, not just on Christmas, but everyday. I have hope as I wait, knowing that where God is leading me, is filled with goodness and gifts that are better than I could ever possibly dream of.

 “To wait with openness and trust is an enormously radical attitude toward life. It is choosing to hope that something is happening for us that is far beyond our own imaginings. It is giving up control over our future and letting God define our life. It is living with the conviction that God molds us in love, holds us in tenderness, and moves us away from the sources of our fear.”  ~ Henri Nouwen

 

 

Phoning Home

The other night we watched the classic movie E.T. The kids loved the part where Gertie dresses up E.T. like a girl for Halloween. They laughed when E.T. see’s a Yoda while Trick or Treating and repeatedly calls out….”Home…home….home…”. They screamed with delight when Elliot lets out all of the frogs in the classroom. Of course, the scene that is a favorite for all of us is when Elliot flies over the treetops with E.T. in his bike basket.

I had forgotten how alarmingly scary E.T. looks when Elliot finds him lying helpless in the river all grey, shriveled up, shrunken, and slowly dying. It is around that time when Elliot begins to also get more and more ill. He is so metaphysically connected to E.T. that he emotionally and physically experiences whatever E.T. does. The poignant scene of them both lying on stretchers with Elliot reaching out to E.T. is a tear jerker moment.

As I was watching this scene, I thought, “Sometimes I feel like Elliot”.

Watching your parent and friend very slowly fade away and deteriorate can sometimes leave you feeling like you are experiencing their pain right along with them. When my mom looks so helpless, I sometimes feel helpless with knowing how to best help her. When she repeats a story over and over again that makes no logical sense, I feel confused right along with her. I am not always sure how to respond. Do I tell the truth? Or do I lie and “meet her where she is” in her memory (which is called therapeutic fibbing) . Sometimes it is a fairly easy choice. Like when she says she just went somewhere with my father 2 weeks ago, and it has really been close to 5 years since she has last seen him. Telling her that no, she hasn’t actually seen him for that long would upset her, so why go there?

I have recently found out that mom’s kidneys are not doing well. She has one diseased kidney that is barely functioning and the other is not doing well either. They are going to give her a CAT scan of her kidneys to see where we go from here. Of course, a kidney transplant is not an option. And Dialysis would be very tough on her already fragile system. In the long run, I suppose we are looking at acute kidney failure.

By that time, all that can be done, would be to keep her comfortable as this disease slowly takes her from us. I had always known that this could eventually be what finally takes her. She has had kidney issues in the past. Of course, the doctors can’t give a time line. All the nurse has said is that “we are not near Dialysis yet”. But she did tell me we need to discuss how much treatment we eventually want to go forward with.

For now I will focus on enjoying the time we have left with her, and be grateful for that.

In so many ways, my mom and I have had an Elliot/E.T. type of relationship. We have always been so dependent on each other, for companionship and friendship. I  like Elliot, have tried in vain to repeatedly try to fix her and to lead her to safety. I have felt compelled to hide her “condition” of alcoholism from those outside our family for most of my life. I became consumed early on with keeping my mom alive, sober, and healthy. I feared her leaving me for good and much to early.

Through Al-anon, I learned how to detach from my controlling tendencies of trying to make her “stop” drinking. I still need to practice daily how to “let go, let God” and remember who is really in control. All I can control is the choices that I make for my own life. I practice gratitude continuously to stay focused on living in the “now”. God’s grace and mercy are so much easier to see that way. It’s like leaving your windshield wipers on high all day long. Sometimes that is what it takes to clear away all of those dark negative thoughts from clouding my perception and reality.

This all makes me think of When Peter said we are like “strangers and refugees in this world”. (1 Peter 2:11) That holy longing that I have felt for so long is normal and even good…like E.T, we are not meant to be truly content in this world. This world is a temporary pit stop, or “school”, where we are preparing how to one day live with our Maker. Our trials, disappointments, and losses are all teaching us, and refining our spirits…so that we can make it Home at last!

I like what Max Lucado said: “The only ultimate disaster that can befall us, I have come to realize, is to feel ourselves to be home on earth. As long as we are aliens, we cannot forget our true homeland.

Unhappiness on earth cultivates a hunger for heaven. By gracing us with a deep dissatisfaction, God holds out attention. The only tragedy, then, is to be satisfied prematurely. To settle for earth.”

 I feel good about the fact that I will never be wholly satisfied here. Sure, I am blessed with so very much joy and love and goodness, and I feel tremendously grateful for all of it. But, I know that life here was never meant to be easy. Afterall, our Lord never promised easy. Easy is meant for Heaven….and until then…. I will never give up phoning Home.

The following song illustrates perfectly what I am talking about…..

 

 

 

 

ABC’S of Parenthood

I “borrowed” this from a plaque that I saw recently and wanted to share it.  I have always loved simple statements of truth in quotes or sayings. It gave me the idea to share my own ABC’s of Parenthood….I hope you enjoy 🙂 Mine are in parentheses next to them.

Ask for help!  (Answer the tough questions) (Allow for mistakes)

Be proud of them (Believe in them) (Bake together)

Call a babysitter  (Create peace & balance)

Discover Joy (Dream together) (DANCE!)

Eat birthday cake (not just on birthdays) (Exercise your mind and body)

Find Time (Free your lost inner child) (if it’s lost or broken)

Give them a road map (Glorify God) (Greet strangers kindly)

Honor individuality (Host fun parties) (Happily help them with their homework) (seriously)

Inspire! (Invent exciting adventures!)

Just Listen (Jump in puddles)

Kiss them goodnight (and good morning) (Keep the good memories alive and make many more)

Let them go (Love them unconditionally) (LAUGH LAUGH LAUGH!)

Meet their friends (Make music together) (Munch really tasty and unique foods)

Nurture Kindness  (Never underestimate what they understand)

Order Takeout (Organize your junk!) (that one is for me :))

Pay Attention (PRAY together everyday!)

Quiet Fears (but don’t dismiss them) (Never Quit making your own list!)

Read to them (Regularly) (Reach out to others in need)

Set high standards (Send thank you notes)  (Sit together at the dinner table)

Tip the Tooth fairy! (Treat others the way you want to be treated)

Use Hand Sanitizer (Understand their pain and struggles)

Value Opinions (Vent your anger responsibly)

Wear comfortable shoes (Wish upon the stars) (Wake up with good thoughts)

EXplain the Important Stuff (Xpect ups and downs)

SaY “I love you” (everyday) (don’t Yell (to much)

BE AMAZED (catch enough ZZZZZZZ’s!)

The following is a poster I have hanging in my daughter’s room. It is by a favorite writier/artist named Sark. It sums up much of what parenthood is all about!

HOW TO REALLY LOVE A CHILD

BE THERE. SAY YES AS OFTEN AS POSSIBLE. LET THEM BANG ON POTS AND PANS. IF THEY ARE CRABBY, PUT THEM IN WATER. IF THEY’RE UNLOVABE, LOVE YOURSELF, REALIZE HOW IMPORTANT IT IS TO BE A CHILD, GO TO A MOVIE THEATRE IN YOUR PAJAMAS, READ BOOKS OUT LOUD WITH JOY, INVENT PLEASURES TOGETHER, REMEMBER HOW REALLY SMALL THEY ARE, GIGGLE A LOT, SURPRISE THEM, SAY NO WHEN NECESSARY, TEACH FEELINGS, HEAL YOUR OWN INNER CHILD, LEARN ABOUT PARENTING, HUG TREES TOGETHER, MAKE LOVING SAFE, BAKE A CAKE AND EAT IT WITH NO HANDS, GO FIND ELEPHANTS AND KISS THEM, PLAN TO BUILD A ROCKETSHIP, IMAGINE YOURSELF MAGIC, MAKE LOTS OF FORTS WITH BLANKETS, LET YOUR ANGEL FLY, REVEAL YOUR OWN DREAMS, SEARCH OUT THE POSITIVE, KEEP THE GLEAM IN YOUR EYE, MAIL LETTERS TO GOD, ENCOURAGE SILLY, PLANT LICORICE IN YOUR GARDEN, OPEN UP, STOP YELLING, EXPRESS YOUR LOVE, A LOT, SPEAK KINDLY, PAINT THEIR TENNIS SHOES, HANDLE WITH CARING

CHILDREN ARE MIRACULOUS

Here is a favorite song of mine about parenthood. It is beautiful!