This is for all those caregivers out there…near, and far…
Hope Arises
when all else
seems lost
A prayer,
some kind words
whatever it takes,
no matter the cost
Urgency comes
as the future
seems short,
plans quickly made
& memories forged
Yearning
to hold on
to the now
Yet, not exactly
knowing just how…
As we stand by
feeling helpless,
yet, still helping
things along,
however we can
We will try
our very best
to remain
steady
true
and strong…
And so the journey of dying continues…
I had mom’s care conference on last Tuesday. Her one working kidney is close to dialysis (which they don’t recommend, because of how hard it would be on someone as sick and frail as her), but they don’t know “how close”. Which is frustrating, because they (the Drs. and nurses) never give me any other clear options or suggestions.
They just say, “Her body would not respond well with dialysis” or “dialysis is very hard on some people, and it probably will especially be hard on her.”
And I think, Well, OK, then can you please tell me what I am supposed to do? As her daughter and legal guardian? Do I tell her, “Um, listen, mom….your kidney has failed and to stay alive, you will need dialysis. But, the Dr. doesn’t think you will do “well” going through it, so….we are just going to let you slowly die OK? But, don’t worry, we will give you medicine to keep you “comfortable”. So you won’t have any pain as you die, K?”
See, the thing is, my mom is a stubborn ass kind of gal. (sorry for the cynicism, I just am depressed, frustrated, angry etc….) Oh, and she is totally confused and not even sure where she is most of the time. So I can ask her what SHE wishes to be done with her own life. And, of COURSE I WILL do that, it’s just that her ability to fully comprehend or rationalize what’s going on is shaky at BEST. And being the stubborn rebel that she is, I am SURE that she will choose to go through with dialysis. Which is what I am 99.9% sure what will take place. Which, is anxiety producing, because we are going to get to watch her suffer even MORE than she has. Oh, AND I forgot to mention that she tried to “escape” the other week, so they want to her to move to the memory care floor. Which will be super fun, because with each new major change, dementia gets WORSE. CANT WAIT!
BUT, despite all that angst, cynicism, fear, sadness etc…. here’s the REAL DEAL….
Throughout this long 10–20 year agonizing journey, I have had several people (some seriously and some casually ) ask me, “Do you ever secretly wish that your mom would just die, so that her suffering can end?” Of course, they have asked me that question in varying ways, like, “Do you wish her suffering would just END?” or “Do you ever think she would be “better off” if she were to peacefully pass away?”
And each time I have been asked that question, I have had a deeply angered and resentful inward reaction. Don’t get me wrong, I totally understand where they are coming from. Because if I’m honest, I have had lots of times where I have been tempted by those thoughts. But, see, those comments have come from those who are not caregivers and have NO clue of how deep my commitment, faith, and depth of compassion is for unconditionally loving my ill parent.
Instead I have thought and inwardly cried out, “NO! This LIFE, this frail woman and mother of mine is NOT indispensable! Her life and love is STILL worthy!”
Yet, the world constantly wishes to find easy way outs of our sufferings. As if suffering is to be avoided at all costs. Just look at the billions of dollars that go to abortion clinics (last year Planned Parenthood made 99 million on abortions in our country. All to avoid potential sufferings. We are a hedonistic culture. We want whatever is going to make us “happy” or “feel good”, not matter what.
And not to mention those who try to “medicate” themselves to perpetually numb their mental and physical sufferings. I know all to well those traps of illusions that seemingly help us escape and temporarily ease our sufferings. After all, my mom “self medicated” herself with pills and alcohol to escape her mental and physical sufferings for most of my life.That is mostly why we are where we are today.
The absolute BEAUTY of the Christian faith is that it helps us to find lasting and authentic meaning within our trials and sufferings. Our pain can have redemptive value. When we direct it, or “offer it up”, or redirect it for Good, if you will, to the ONE who guides us and holds us all. With that surrender, comes trust in something bigger than ourselves. We realize that we are NOT alone. We have our Lord who loves us as a Father, who willingly sacrificed it ALL for us, just so that we could be with him forever. We also have our whole community of believers, who support us, hold us, and take care of us. We can let go of that illusion that we need to fix it all…or be it all…to everybody or for everyone.
We can stand back and see more clearly that EVERYTHING is a beautiful gift in our lives. And, yes, as extraordinarily difficult as it is, this includes all of our trials and sufferings.
For it is through our sufferings, we are refined to be more like Him (if we allow it). We have the opportunity to grow in virtue; love, hope, charity (the big 3 theological virtues), kindness, courage, justice, fortitude, prudence, self-control, joy…to name a few. We gain a deeper compassion and understand for our loved ones who suffer, and for those who deeply hurt and suffer as we do. It takes LOTS of practice to become virtuous…so, trials and tribulations help us get that practice. I can often relate to what Mother Theresa once said,
“I know God won’t give me anything I can’t handle. I just wish he didn’t trust me so much!”
I try so hard to focus on the good…there is so much. But on days when mom is seeping in grief from old hurts that have resurfaced…like thinking her mom just died that day (it’s been 13 years), or my dad just left today (even though it’s been 8 years) it is so hard. Dementia is a lot like reliving a nightmare…over and over again. That is the hardest part….yesterday becomes today, and not in a good way. I do feel comfort that I can help her through it, as best I can. But many days, the pain lingers…and so I cling to my faith and the goodness in my life. And continue to let go of the pain, anger, and sorrow….one day, one minute, at a time.
I wish I could switch
a light on in your head
to chase away
the fears
that you so dread
To feel your mom is not well,
“How is she now?”
“Have you heard, you ask?”
I reply, “She’s well mom, don’t worry
she is well.”
You miss her so,
As I miss you,
Slipping away
More & more
each day…
Perhaps one day soon,
you’ll see her again,
waiting to greet you
with her outstretched
loving arms…
I haven’t written much lately, as life with 3 young ones and an awesome husband who works very hard for his family, doesn’t leave me much extra time to write!
Mom’s dementia has progressed significantly in the last 6 months. She is in and out of reality now. Her spunky spirit and personality are still there though, which allows us to still have some great conversations! A lot of times she seems to be living in the past. At times she still thinks that my dad and her are still together (they haven’t been for almost 8 years).
She says things like, “I think I will have your father take me to dinner to (will name a long ago restaurant they used to frequent) this weekend.” Or the other day she said to me, “We had a terrible family tragedy. My dad (my bapa who has been gone for over 20 years) just lost his job that he has had for 30 years. My mother is SO upset.” My heart sometimes breaks a little with each delusion. I see her pained look and I feel the pain too. But I have the pain of also seeing her slowly drift away from me.
I have come to a comfortable place of acceptance now…most days anyway. I am grateful for being entrusted to care for my mother in her last years, or days. My faith has allowed me to see that forgiveness is key. It is never easy, but nothing worth anything in life ever is. I am closer and closer to letting go of the past, and focusing on the good of the future. I have made peace with the past, and can now fully live in the present. God has placed amazing guides in my life to help me do that…my therapist, my spiritual director, my husband and kids, my church community and friends….and for that and this life I will be forever grateful! I love poetry. Here’s another…..(and a favorite song of healing at the end)
I will be your eyes
and help you see
that not all is lost..
you still have me
Your mind betrays you…
and you wonder, Why?
ow did this happen?
Where are you?
You just can’t believe
that your parents
are really gone…
You can still make jokes
and I can still make you laugh
I thank God for that
When all else
is foggy and unsure
you can still
hold my hand and know
that it’s me for sure
And for that
today, now,
in this moment,
I am grateful.
Mended by Watermark….a beautiful song of healing
You repair all that we have torn apart and
You unveil a new beginning in our hearts and
We stand grateful for all that has been left behind and
All that goes before us
You’ve got all things suspended
All things connected
Nothing was forgotten
‘Cause your love is perfect
You are our healer
And you know what’s broken
And we’re not a mystery to you
(to you, oh Lord, to you)
We will dance ’cause you restore the wasted years and
You will sing over all our coming fears and
We’ll stand grateful for all that has been left behind and all that goes before us
Lord, you mend the breech
And you break every fetter
You give us your best, but what we thought was better
And you are to be praised
You are to be praised (4x)
(to you, oh Lord, mender of the broken)
Today’s gospel reading hit home extra hard for me. (I wrote this a couple weeks ago). It was the scene where the leper, the outcast & shunned one in Jesus’ day, Came to Jesus & expectantly begged The Lord to heal him. Jesus healed the man instantly, yet told him not to tell anyone. Which personally, seemed like Jesus was using reverse psychology. I mean, did he really think the healed man could contain his excitement and praise of this miracle worker? I doubt it. But, what do I know? I’m only human.
I seems that Jesus must have assumed the man would proclaim his miracle healing to all who would listen, even though he sternly told him not to. I think it shows again, the depths of Our Lord’s mercy and forgiveness. He was fully willing to undergo being inevitably shunned, ridiculed & slandered for having touched an unclean leper. He knew he would not be allowed to enter towns or Temples or dine with anyone. Yet,he sacrificed his dignity and reputation to save and heal this one man. That to me, shows ultimate compassion and love!
What particularly struck me was the reflection that followed the Gospel reading: “Do you seek the Lord Jesus with expectant faith? No one who sought Jesus out was refused his help. Even the untouchables and the outcasts of Jewish society found help in him. Unlike the people of Jesus’ time who fled at the sight of a leper, Jesus touched the leper who approached him and he made him whole and clean. How do you approach those who are difficult to love, or who are shunned by others because they are deformed or have some disease? Do you show them kindness and offer them mercy and help as Jesus did? The Lord is always ready to show us his mercy and to free us from whatever makes us unclean, unapproachable, or unloving towards others.
“Lord Jesus, inflame my heart with your love and make me clean and whole in body, mind, and spirit. May I never doubt your love nor cease to tell others of your great mercy and compassionate care.”
I immediately thought of my mom and the struggles I have had and still do with fully accepting her and accepting this situation of her slow suffering illness & inevitable impending death. I still fight bouts of stubborn anger and resentment, strong enough sometimes where I avoid seeing her for a couple weeks at a time. I know it’s my way of rebelling in a sense, from this role I have been forced to lead. The hard part is when I wake up and realize that I have really only ended up creating more of the hurt that I was so resentful about to begin with! Oh, the irony!
Earlier this week I heard on Catholic radio, a priest explaining that true spiritual growth happens when we realize and truly accept that our difficulties in life are really our unique paths to achieve holiness. It can be so blindingly difficult to not get trapped in our sinful webs of resentment, revenge, anger, and fear. Sometimes I hang on to tightly to those thoughts of bitter despair, that prove to serve no one. I get stuck in the “why me’s” and the “how could you?’s I know that a certain amount of grieving is normal and even healthy, but when it becomes stifling, then I know that it’s not “of God”, & no good. When I focus on what I have gained throughout this journey, and not only lost, then I am better able to feel grateful for everything I have. I can more easily appreciate the beauty, but also recognize the beauty within the suffering.
An example of this happened yesterday while I was eating dinner with mom at the care center. She has been having a tough week, and when she first saw me she called out “oh!!! I am SO happy to see you!!! I love you SO much!!!” In the past mom was affectionate, but not as nearly openly expressive as she is now at times. Dementia changes the brain in many ways, and occasionally it can bring out changes for the better.
It is very humbling to repeatedly have to tell your grief-stricken mom that her parents are no longer alive, and that no, they didn’t die in a car accident on the way home from Arizona. Or that no, her father did not suddenly lose his job. Or that no, your parents got along well, they don’t fight all the time. Her vulnerability teaches me that life is short and precious. I am learning that our words matter a great deal, and that understanding and compassion go a long way, especially when there are so many life and “death” situations or imaginings.
This poem is for all of those 55 million souls who never got the chance to see if they could thrive, succeed, or make a difference in this world.
It has been 40 years of legalized “mercy killings” in our country. I hope and pray everyday that the next 40 years, which our children and grandchildren will inherit, won’t sacrifice 55 million or even more. God be with us.
FORTY
All of those lost souls
go somewhere
waiting
praying
to be reunited
And I wonder,
of those who
could have
had a chance,
and instead
were left there
to die…
Do they sit and wonder
lament
and ask again and again,
WHY?
We can shovel
all the dirt in
and then turn
and say
there is no sin.
But, just how long
until the wrath
and deep hurts
catch up
to our hearts
disguised within?
Sometimes the things
we fear the most
end up being
just what
we needed.
We cover up
our actions
and “choices”
Buying the lies
of ”out of sight, out of mind”
Burying them deep
beneath
the facades
and slogans
and empty promises
we seek…
U2′s song “40″ was inspired by Psalm 40 in the Bible. It is one of my favorite songs.
HOW LONG TO SING THIS SONG? ~Bono
This is my favorite version of the song.
This is my other favorite video version of “40″. U2 ends every concert with “40″, and if you are a u2 fan, there is nothing quite like hearing it live and in person!
I can’t take
your pains away
But I can
make sure
I refuse
to run…
So I will stay.
Even as I fight
my urges
to escape
your suffering
confusions
and pain
Because I have learned
your problems
don’t go away
just because
you turn around
and close your eyes
If you pretend
the gaping hole
in your heart
is whole,
One day,
you’ll trip up
and sink in
deep
and down so low
You’ll wonder
how it is
you could’ve
never
really known…
So…
I will keep my sights
way up high
day and night
And I will know
at my core
that His grace
holds us so close
And cuts
clear through
all these
bitter pains
And gradually,
slowly,
surely,
renews,
rebuilds,
restores,
For me,
for us,
for you.
This is a beautiful song about feeling obsolete as an older person…when you are frail, slow, and forgetful, and not very useful to anyone anymore, so it seems…(but is far from the truth)
