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When I Leave the Room

My mom’s home now for the last six years has been a little room that consists of a bed, chair, two dressers and a bedside table. The world of a person with dementia becomes smaller and smaller as the disease progresses. Memory falls away for the places and people that he or she were once attached to or dearly treasured.

At first it bothered me when mom lost her memory of her beloved lake home, where she lived prior to moving to the care center. She remembers her childhood home well, which is often the case with dementia.

It took me a long while to adjust to her new cramped physical space and call it “home” (she does not, as she frequently tells me “please take me home”.) I went through all the regular grieving stages of loss (still do) of denial, anger, bargaining, acceptance, & depression as each new major change occurred.

Every time she would fall, get lost, need to change rooms etc I seemed to repeat the cycle. I find myself staying in the acceptance stage these days for longer periods of time. It’s not true that “time heals all wounds”, but it certainly helps in lessening the sting and intensity of emotions.

I have come to accept and appreciate my mother for who she was, is, and will become. I recognize the many important lessons I have learned throughout this hard journey, and feel very grateful for the grace God has given us along the way.

Most of all, it has taught me humility. The bottom line is that none of us are perfect, or ever will be this side of heaven. We are all pilgrims on a journey, who are just trying to make our world a little better with the tools we are given.

Some of us are not as equipped to handle the stresses of life as others, for whatever reason. But no matter the reasons or circumstances, we all deserve dignity, respect, and most of all, love.

Amidst the confusion, there still comes days and moments of clarity; and with that comes gratitude. I am grateful for the wisdom and compassion that I have acquired, allowing me to better empathize with others going through struggles of their own. I am grateful for the angelic nurses and aids who patiently care for my mom every day. They lead her, feed her, dress her, and care for her when we can not. Without them, she would not be here with us.

The following is a song that reminds of both my children and my mother. When I leave my kids’ rooms at night after tucking them in, I often reflect on how fast time has gone and I wonder, “When did they get so big?” Some days I wish time would go faster, and other days I wish I could press a pause button to slow the time down.

Similarity, I often leave my mom’s room and think, “How long will I have her?” “Will she remember less the next time I see her?” I reflect on how the time as flown by throughout this journey, and how painfully slow it crawls on certain days.

What both circumstances have in common is the love that floods me as I close their door. I stand there feeling amazed that we have made it this far, and amazed at the amount of gifts that we have been given. And I pray for the continued strength to persevere and appreciate each peak and valley along the way…

When I Leave the Room

Good night,
Looks like we made it through the day
The moon sighs and I know that we’re okay
Sleep tight,
I love to watch you drift away
I would come with you but on my knees I’ll stay

Good night
Five little fingers holding mine
Take flight
Into your dreams and lullabyes
There’s nothing more that I can do
But just fall more in love with you
And ask the angel armies to stand by
When I leave the room

I’m gonna fail you
I already have
Ten thousand times
I will fall down flat
You’ll have a seat in the front row
of everything I don’t know
And all I’m trying to be
You’ll see

Good night
There will be storms that we come through
In time
We will slay dragons me and you
I’ll always wanna hold you tight
Keep you safe with all my might
So I will leave Jesus next to you
When I leave the room

And you will run ahead
As if you know the way
And I will pray more
Then once you’d have to pray
There will be words we can’t take back
Silences too
And I’ll be on my knees
You’ll see

One night
When I am old and unsteady
You’ll want me to fight
But I’ll tell you that I’m ready
When there’s nothing left to do
I will still be loving you
Then you’ll fold your fingers into mine
And I will let Jesus hold you tight
When I leave the room

http://youtu.be/npKnkTaywSI

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Dreams and Feelings

We had dinner the other night with mom in the Care Center Deli. The kids and I love their cheeseburgers and shakes. Mom talked of her very strange dreams that she has had lately (over and over again). One of them was not actually a dream, so I had that familiar feeling of not knowing how to accurately respond when she suddenly exclaimed, with that incredulous look in her eyes,

“Another dream was REALLY crazy! Someone was there telling me that you are in charge of me! Is that true? It can’t be, can it?!”

I got that deer in the headlights feeling again, like I need to respond ultra quick with the right action or words to escape danger or unnecessary drama. A part of me wanted to say, “No, mom that was no dream. It was probably the nurse the other day, when you snuck in another resident’s room to call 911!” I also wanted to laugh, because she often surprises me with truths you could never predict her remembering.

So, I responded with, “Umm…well, yeah, in a way, I am. (I am her legal guardian) I make some of your medical decisions and things like that.” To which she angrily responded with, “What?! Well, don’t DO that anymore! I can do that myself!”

Often, when communicating with a loved one who has dementia, you can find yourself feeling trapped in a conversation. Your faced with the dilemma of, Do I tell the truth, a portion of the truth, or just make it up altogether? You are constantly assessing the mood of the situation, and predicting what your loved one’s reaction may or may not be in any given moment. I am getting more skilled at knowing when to elaborate or just changing the subject entirely, without creating too much upheaval. Well, on most days anyway, because on certain days those moods of hers can turn on a dime.

The other day, we came in and she was waiting in her wheelchair at her door looking out anxiously. As soon as she caught a glimpse of us coming down the hall, she burst into emphatic tears, and expressed in between hot sobs over and over,

“Oh….I am so glad to see you…you just have no idea….how happy I am to see you…..”

It is very hard to not get choked up at times when I see her so vulnerable. I had 4 young kids (my 3 plus a friend) with me, so I tried to pull it together and tried not to tear to much in front of them. We immediately cheered her up, and she was able to carry on a pleasant conversation with me. The kids, however, usually get restless and like to get a little to wild in the hallways, which the nurses and aides are always very patient about!

When I witness that raw emotion and vulnerability I am always reminded of one of my favorite quotes by Maya Angelou,

      “I’ve learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel.”

Because, in the end, mom won’t realistically remember any of these conversations that we now have with her. Rather, it is the love that she will feel, and the care that was continued to be given that will live on in her heart, and in ours.

Anna and Nana

Worthy

The locked down psych ward in the hospital is not a fun place to visit. There are many locked doors in between you and where you need to go. The nurses usually take all of your possessions away from you, or lock them up in your room, except for the clothes that you are wearing. When you walk into the main visitors room, you see many lonely, desperate, angry, or confused looking people hanging around.

Sometimes the people don’t really understand why they are there. The multiple times that my mom went into the psych ward, she did not fully understand why she was there. She was usually very angry, anxious, confused, and sad. She has never really believed that her memory or addiction problems were severe enough to put her in danger.

She still tells me on a regular basis that “She is no more forgetful than any other 65 year old!” Which is sort of funny, because she is actually 69, and she repeats that same statement often, 5 minutes after she last stated it. I usually respond with an “Ok, mom…Ok.” And when she says things like, “Man, I would give anything to have a beer right now”, I usually say, “I bet you do mom, I bet you do…..”

I recall a time where I took mom to a routine Psychiatric visit and she ended up being hauled up to the psych ward with no warning. It was a very helpless feeling watching the big burly guards grab her thin, frail arms and lead her away from me, all the while she is pleading for me to do something. The doctor didn’t feel she was safe any more, and put a 72 hour hold on her, which is routine when patients are unstable and at risk for potential self abusive behavior. On that visit though, I never saw it coming. One minute we were talking about her meds, behaviors, and recent problems, and the next the doc is telling us she needs to be admitted.

There is nothing quite so frightening as getting a late night call from your mom in the psych ward, who is crying and pleading for you to get her out of there. In those moments I would plead for God to help me detach from the chaotic drama and misery that mom was trying to pull me into. Sometimes I was OK at it. Other times, I felt like I was sinking in a sea of helplessness, as I had no way of ever giving her what she wanted. All I could do was listen, and give her more tough love, by saying things like “mom, you need to stay there until you feel better and it’s safe for you to go home.” Sometimes it seemed to calm her. Other times nothing I ever said was good enough.

I know now that I tried my very best to help her, and that it is all I was ever expected to do. Sometimes you can give someone every chance to heal and recover, and they will never choose it. It doesn’t mean that you are unworthy, it just means they don’t think that they are worthy enough for you. It helps me immensely to know and truly believe that I will ALWAYS be worthy enough to God, whose opinion I am most concerned about.

I remember

to well

all those

locked doors

keeping us apart.

 

The psych wards,

the memory floors,

the locks on your heart

and mind

shut tight

keeping me

on the outside.

 

That day:

A routine visit

to the psych

and without warning

they snatched you away.

 

I stood alone

helpless and afraid

not knowing

what to do

while you yelled out

“Mary, don’t let them take me away!”

 

The security guards

on either side

keeping you close

as I trail behind

confused and afraid

another 72 hour hold

to keep you safe….

 

And all you

want to do

is run away free

and escape….

 

I faithfully wait

leave on a light

as you fretfully sit

and put up a good fight.

 

And as I always do,

I  fervently pray

that our merciful Lord

will help you

finally

find your way….

Big Heart of Art - 1000 Visual Mashups

 

Lifeline

 

How do you let go of someone who is still here?

How do you make peace with all the lies and fears

that have persisted all these years?

 

The bed bugs are all just in your deteriorating mind.

It’s just the very slow progression of this disease,

so very cruel and unkind.

 

The extreme dryness sets in

as you tear at your tender skin,

frantic and in pain.

 

You’re still searching for a Savior, or someone to blame.

On most days, it all just looks the same.

 

Afterall, if we focus long enough on the external,

we’ll never have to look within.

And we’ll still be stuck wondering

what could have been….

“Lifeline”

You’re watching everything you ever held on to
Slip away from you
And all you’re running from
Well it’s catching up to you Got you looking for a lifeline
Swimming in the high tide
Waiting for the daylight
To bring you home The world is too big to never ask why
The answers don’t fall straight out of the sky
I’m fighting to live and feel alive
But I can’t feel a thing without you by my side
Send me out a lifeline You’re watching everyone you ever belonged to
Walk away from you
Maybe all along you’ve been running from the truth Got you looking for a lifeline
You’re swimming in the high tide
Waiting for the daylight
To bring you home The world is too big to never ask why
The answers don’t fall straight out of the sky
I’m fighting to live and feel alive
But I can’t feel a thing without You by my side
Send me out a lifelineThere’s nothing I would change, I’d give it all away
For you again and again and over again
Everything I own is in your control

I’m looking for a lifeline
Swimming in the high tide
Waiting for the daylight
To bring me home

The world is too big to never ask why
The answers don’t fall straight out of the sky
I’m fighting to live and feel alive
But I can’t feel a thing without You by my side
Send me out a lifeline
Won’t You send me out a lifeline
Send me out a lifeline

“I will hold on hope, and I won’t let you choke on the noose around your neck….I will find strength in pain” ~Mumford and Sons

Shine On

I have unpleasant visions of my mom’s thick, gnarled, ultra long toenails that are just waiting for me to attend to. The nurses don’t tackle toes. Apparently, toes are above and beyond the call of duty. I really can’t say that I blame them. But, there is something very sincere and intimate about caring for someone’s feet. Whenever I do mom’s toes, I feel humbled, and glad that I can help her in this way. Although, I think the salon would do a much better job. And almost every woman loves to have her “toes done”.

Changing adult sized diapers would be my deal breaker. The committed, caring, and compassionate aides and nurses are saints, in my eyes. Changing a confused, sometimes angry, depressed adult who sometimes resents you and hates you would be very tough work. I am so eternally grateful for those angels caring for my mother day after day. She keeps them on their toes, and they keep her on hers! I can sleep soundly now, after many years of worry, knowing that she is safe and well taken care of. For that, we are all blessed.

I think of what it means to lovingly sacrifice for those who are defenseless, vulnerable, alone, and without a clear voice to say what their true desires are. I think of the frail elderly, the physically & mentally challenged, the unborn, the under-appreciated, the unaccepted and the unwanted. Who is willing to be their voice…their helping hand…their advocate and Christ like friend? We are all called to be God’s hands and feet in this painful and broken world. When Jesus rose again His wounds were still visible, helping us to see that with His help we can survive our brokeness. We have our scars and wounds, like the risen Christ, to remind us what He has brought us through, and what He has lovingly sacrificed in order to make us His forever.

I think that it is a comfort to know Jesus’ wounds remain visible in His risen body. Just as our wounds are not taken away, but become a source of hope to others. And underneath our scars, we bear His light, for the whole world to see. During the Easter season, we summon the courage to let that light shine on through us for now and for always!

“Christ has no body now on earth but yours;

no hands but yours;

no feet but yours.

Yours are the eyes through which

He is to go about doing good;

yours are the hands

with which He is to bless people now.”

~St. Teresa of Avila

Dear Tears

I wrote the poem “Dear Tears” about 15 years ago, while my grandma was suffering with vascular dementia. She had the same type of dementia that my mom has. My mom’s mom, whom we called “Nana”, had dementia for about seven years, until she passed away in 2000. My husband and I got married just a few months after she passed.  By the end of her illness, she did not recognize most of her family. Occasionally, she seemed to have fleeting glimpses of recognition. Sometimes she seemed to remember my mom, and bits and pieces from her old life.

I have vivid memories of visiting Nana at the Care Center, which was situated not far from my parents home. At the beginning of her stay, she would beg and beg me to take her home in my “red car”. It was heart wrenching to leave her there and witness her sad, forlorn, and confused eyes, with her never understanding why we were keeping her there. I would visit often with my mom, taking Nana for walks in her wheel chair around the property.

Many times Nana mistakenly believed that my mom was married to her first boyfriend, John, whom she had dated before my dad. She hadn’t seen or talked to John in over 30 years, but my grandma would often ask how he and his family were doing, and what he was up to. Mom and I would sometimes joke about that, and I would tease her for once throwing an engagement ring John had given her into the snow, when they had gotten into a fight one night. Nana also sometimes believed that her parents were still alive, and she wondered why they never visited her. It was painful explaining to her over and over again that they were in fact, dead and gone and now in heaven.

We would often go and visit the song birds down the hall from Nana’s room, where they nested and flitted about in their wall sized enclosure. Some days Nana didn’t mind going to sit with them and listen to the tiny bird’s sweet tweeting and chirping. As time went on though, she frequently rebelled at having to see those birds. On some level, I imagine that she understood that those tiny little things of beauty were stuck and trapped inside, just like she was.

Mom and I were at Nana’s bedside when she passed peacefully to her new life with God. I remember praying the Rosary, and my mom later told me that she had felt “a strong wind” blow across the room just after Nana died, even though there were no windows in the room, and the one and only door in the room was tightly closed. We both firmly believed that her angels took her, and that the gush of wind could’ve very well been them leading her on to her next life.

I remember having emotional conversations with my mom, where she would plead with me saying things like, “Mary, if I ever end up this way, you can not put me in a nursing home. I’m serious Mary, your father and I have enough money to get full time nursing care and that is what I would want. Promise me that.” I am sure that I promised her. I probably said something like, “OK, OK, OK mom, geez…do we really need to be talking about this right now?” Little did I know then, that less than 10 years later, I would be needing to do the very thing that she made me promise her I would not do. No wonder I had severe anxiety attacks while searching for a suitable care center for her to move into. I have since gotten help for that, thank God.

In many ways, caring for my mom feels so similar to how it felt caring for Nana. They both have the same witty humor, inquisitive natures, and stick to it stubbornness. My children call my mom Nana, just like I called her mom Nana. Sometimes it’s uncomfortable, because I have such clear memories of being with Nana, and I get a sort of shock or “twilight zone” type of feeling when it sinks in that yep, it’s deja vu. I’m here again with dementia. Only it’s not Nana. It’s my mom. I am thankful for the kids in those moments. They are perfect for sucking me back into the now, and for helping me to appreciate the joy and innocence again, which they exude so well.

Dear Tears

Deep within,

my soul cries.

 

Tears and sadness

for the one,

who can not shed.

 

Tears for the one,

who knows not

what’s in her head.

 

Tears for the one,

who’s so alone,

in a world so

mangled and twisted.

 

Crying out my pain

for the precious and the dear,

who one day awake,

and know not

the face in the mirror.

 

These tears

which fall

will rest,

knowing that in the end,

His will

is what’s best.

 

This is a beautiful song written about the singer’s grandma, who had dementia. It is written and sung by the Dixie Chicks. (I don’t know the people in the photos)

This beautiful song, written and sung by Jon Foreman (lead singer of Swicthfoot) reminds me of my long journey of caring for my mom, and of all the years I spent trying to help her get better. It also helps me remember to unite my sufferings with Christ, who holds us close in our pain and deep fears.

 

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.