Caring Comes First / Based on 1 Corinthians 12:27-13:13 and 2
Corinthians 4:13-5:1 / Delivered to Hudson-UMC on June 10, 2018 Dementia Awareness Sunday
Hymns: Help us Accept Each Other, Just As I Am, I’ll Fly Away
Children’s Sermon: I had several different containers with a
quarter in them; a spice jar, a little pouch from Mexico, a cleaned used Keurig
pod, a tiny Tupperware container, a medicine bottle, and a large cloth. As I revealed each quarter I asked how much
it was worth. Of course, it was always
worth 25 cents no matter the contain. I
explained our bodies are like those containers.
Some are big, some are small, some need medicine, and some have been
used up and feel broken. Yet within each
of us is the spirit of a child of God and the value is just the same.
1Co 12:27 You are the body of Christ and parts of each other.
28 In the church, God has appointed first apostles, second prophets, third
teachers, then miracles, then gifts of healing, the ability to help others,
leadership skills, different kinds of tongues. 29 All aren't apostles, are
they? All aren't prophets, are they? All aren't teachers, are they? All don't
perform miracles, do they? 30 All don't have gifts of healing, do they? All
don't speak in different tongues, do they? All don't interpret, do they? 31 Use
your ambition to try to get the greater gifts. And I'm going to show you an
even better way. 13:1 If I speak in tongues of human beings and of angels but I
don't have love, I'm a clanging gong or a clashing cymbal. 2 If I have the gift
of prophecy and I know all the mysteries and everything else, and if I have
such complete faith that I can move mountains but I don't have love, I'm
nothing. 3 If I give away everything that I have and hand over my own body to
feel good about what I've done but I don't have love, I receive no benefit
whatsoever. 4 Love is patient, love is kind, it isn't jealous, it doesn't brag,
it isn't arrogant, 5 it isn't rude, it doesn't seek its own advantage, it isn't
irritable, it doesn't keep a record of complaints, 6 it isn't happy with injustice,
but it is happy with the truth. 7 Love puts up with all things, trusts in all
things, hopes for all things, endures all things. 8 Love never fails. As for
prophecies, they will be brought to an end. As for tongues, they will stop. As
for knowledge, it will be brought to an end. 9 We know in part and we prophesy
in part; 10 but when the perfect comes, what is partial will be brought to an
end. 11 When I was a child, I used to speak like a child, reason like a child,
think like a child. But now that I have become a man, I've put an end to
childish things. 12 Now we see a reflection in a mirror; then we will see
face-to-face. Now I know partially, but then I will know completely in the same
way that I have been completely known. 13 Now faith, hope, and love
remain—these three things—and the greatest of these is love.
This Sunday is set apart as Dementia Awareness Sunday. There are 5.7 million Americans living with
Alzheimer’s and 110 thousand in Wisconsin.
It is the sixth leading cause of death.
Rev Dawn invited me into the pulpit not because I’m good at researching
statistics, but because my husband and I are living the dementia journey. It is my hope to bring you a message of the
power of caring, understanding, acceptance, love, and strength. It will be part testimonial, part
informational, and part preaching from scripture.
My hubby’s name is Mike, but I call him McQ. Our official start on this path was the
spring of 2014. We sat in the office of
a neurologist at the May Clinic in Rochester and heard him say his diagnosis
was mental decline due to probably early onset of Alzheimer’s disease. I had been aware something wasn’t right since
2010 and we visited multiple doctors to find something we could cure. The answer four years later was that there
was nothing we could cure. My mind raced
and when I asked what we should do next the doctor’s instructions were short;
get your legal paperwork in order, stay active mentally-socially-physically,
and buy the book on Alzheimer’s Disease in the clinic book store. That was it.
I was full of emotion after I left that room. McQ’s response was denial. That combination between us made those early
days very hard. McQ felt it wasn’t true
and I felt it wasn’t fair.
I was angry at God for this cruel stealing of our
dreams. I cried and argued and pleaded
and complained in prayer. I had been a
servant in the church from my youth. When
I was too old to attend Sunday School I taught it. I became a church choir director when I was
21 in Prairie du Chien. When I came to
Hudson I immediately was active in the music ministry. After taking Disciple Bible study I taught it
for eight years and led other studies. I
became a Lay Speaker and then Lay Leader of the church. I screamed at God – I work hard for you! We don’t deserve this!
The summer of 2014 happened to be the summer Pastor Bruce took
extended time away. Somehow through
conflicts in schedules I was in the pulpit four times in two months. I preached every two weeks. Kathy needed information for the next Sunday
two weeks in advance, so I was prepping for the next sermon before I even
delivered the current one. I knew this
was a God thing. Focusing on our
diagnosis brought me pain. God invited
me to focus on His word and serving His people instead. I still had all the emotions but the
relationship between God and I was strengthened.
Meanwhile McQ retired after 32 years at 3M. It was a little earlier than we had planned
but they bridged Social Security until he qualified for disability. I had moved into a new job at US Bank in the
end of 2013 and had proven myself trustworthy and capable so was able to work
from home starting the fall of 2014.
That worked until the role of caregiver became larger than I could
handle along with working at my corporate job.
I left my job at the end of March in 2017 and changed my LinkedIn title
to Chief Helpmate of Mike McQuiston.
From 2014 on I’ve read all I could find on dementia and Alzheimer’s
Disease specifically. Dementia is an
umbrella term and Alzheimer’s Disease is the most common form but not the only
form. It is what we were handed so what
I have focused on. I have also studied
all I can on caregiving. I have studied
but let me give the average disclaimer here – I am not a medical professional. What I’m sharing is based on books, listening
to YouTube training videos, and reading what other caregivers share in online
support groups. I was helped greatly by
our county’s Aging and Disability Resource Center staff. Some of you listened to Tara when she did a
presentation at our church some time ago, and Nancy has spoken here as well
from that organization.
To be a caregiver is different from someone who provides the
service of medical care. It is a
different form of the word “care”. Caring
about the person comes before caring for them.
The doctor that told me to go buy a book, when I asked what to do now,
was not a caregiver. He was a person
giving medical “care” but not necessarily showing care.
I am McQ’s primary caregiver, but we need more people to
understand and be secondary caregivers for us to walk this dementia journey successfully. For that reason, I hope to help you
understand more about the journey we’re on.
I’m counting on you caring.
Alzheimer’s is often called a memory problem. If you read the article in the newspaper this
week with Rev Dawn and Vicki you know that is not quite accurate. Alzheimer’s is an illness that causes brain
death. That does affect memory, but it
also affects much more.
The ability to process vision decreases. As the disease progresses the field of vision
gets to be like looking through a small tunnel.
Interpretation of what is taken in through the eyes is also
altered. Dark spots on the floor are
likely to be interpreted as holes a person could fall into. An object could be right in front of a person
and yet not be seen until pointed at. One
caregiver described a frightening morning when her husband had picked up his
razor and his brain told him it was his toothbrush instead. She caught him before he was injured.
The senses of hearing and smell are similarly affected. It becomes impossible to focus on a
conversation if there are other sounds in the room. Smells like spoiled food or body odor may not
be recognized. It isn’t that the senses
themselves are diminished, it is the brains ability to interpret what it is
receiving that is failing. We depend on
our senses for safety. When the senses
begin to fail so does the ability to maintain personal safety. Falling or eating spoiled food or any number
of things could cause injury or illness.
Early on this journey I read, “While I Still Can” by Rick Phelps. It said the three most important questions
for caregivers are: Is he safe? Is he
pain free? Is he content? These give us goals in priority order.
I continue to use these three questions often. It can be frustrating because being kept safe
often conflicts with being content or happy.
The desire to be able to be left alone at home is strong, but if that is
not safe then the unhappiness needs to be tolerated. Safety is number one. End of discussion.
The brain develops in stages.
Executive reasoning is a more recent part of the brain in humans. Alzheimer’s attacks the newer formed sections
of the brain first. Decision making, and
reasoning disappears early on. The
ability to perform complex tasks becomes more difficult. The early part is more core survival and contains
the automatic systems we don’t think about like breathing or swallowing or our
heart beating. Fight/flight/fright is
also an early formed part of the brain. In
the final stages the ability to know when to breathe or when to swallow ceases
to be automatic as those pathways are also lost.
Of special interest to my study was what happens to
communication. Teepa Snow is a teacher
that has many YouTube videos. She
describes the brain as storing language on the left and rhythm on the right,
and the left is lost while the right is retained. Brain scans of dementia patients show the
activity levels support this.
There are a couple exceptions to language being stored on the
left. Words that are negatively charged
because they shouldn’t be used are stored on the right. That includes sexual talk, curse words, racial
slurs, and any other ugly terms your Mom told you never to say in public. These “special” words are retained while most
other polite language stored on the left side disappears. When a person with dementia uses these phrases,
it is not showing that is who they really are.
It is not that they lost their filter and are displaying their true
colors. It is that the pathway to normal
language has been lost and these are the words that are left.
The other language that is stored on the right is more of a
gift. Music, poetry, and prayer are also
stored there. That is why sometimes a
person in the later stages of dementia lose the ability to speak but can still
sing a favorite song. The concert this
afternoon by the O’Brien brothers is celebrating this truth. When I was active as Klondike Kate we visited
a nursing home and I moved close to a man while singing Sentimental Journey and
he sang along. His daughter beside him
started crying softly. Later she said
that was the first time she had heard his voice in over a year.
Chit Chat is also mostly kept until near the very end. You can talk simple pleasantries to a person
with dementia and have no clue there is anything wrong. As the condition progress the pathways to
words, especially nouns, begins to deteriorate.
There are times the person knows what they want to say but the words can’t
be found. You and I run into this
situation now and then and if you’re like me you find it frustrating. Imagine if it were all day every day. Teepa Snow teaches that approximately every
fourth word might be lost while a person with dementia is attempting to listen
to a conversation. Can you just imagine
how difficult and frustrating that could be for you? It is hard to follow!
As the pathways to information are cut off retrieving
information can become random. If you ask
a question, a person with dementia may go to their brain for the answer and
find a phrase to reply so replies confidently.
It is a response, and the desire to communicate is strong so the
response is given. Quite often it isn’t
valid. It isn’t a lie. There is no consciousness of attempting to
mislead. It is just confidently inaccurate
because that’s what the brain delivered back to them.
There are good days and bad days, and this makes it hard to
know just how much support a person needs.
If it is a good day then it is annoying to have someone attempt to do
something for you that you can do yourself.
If it is a bad day, then tasks become frustrating and the world can
become frightening. A caregiver must be
flexible.
The progression of the disease is not consistent. The length of survival after diagnosis can be
between 5 and 20 years with the average being 8 to 12 years. Some people forget their loved one’s names
and others keep those memories. Some
people wander, and others don’t. Some
become angry or violent, and others don’t.
There are many unknowns, and this is a stressful part of walking the
dementia journey.
Therefore, it is not a journey to be taken alone.
I have heard the reading from 1 Corinthians at many weddings
and often thought it was written specifically to instruct how a husband and
wife should treat each other.
“Love is patient, love is kind, it isn't jealous, it doesn't
brag, it isn't arrogant, it isn't rude, it doesn't seek its own advantage, it
isn't irritable, it doesn't keep a record of complaints, it isn't happy with
injustice, but it is happy with the truth. Love puts up with all things, trusts
in all things, hopes for all things, endures all things. Love never fails.”
It is not instruction to newlyweds. It is instruction on how to treat members of
your congregation. It comes after the
section of explaining how each of us has specific gifts like there are many
parts of a human body.
12:27 You are the body of Christ and parts of each other.
These verses describe the ideal caregiver. Patient, kind, not irritable, not keeping
records of being wronged, never giving up, never losing faith, always hopeful,
and enduring every circumstance.
I said in the beginning it is my hope to bring you a message
of the power of caring, understanding, acceptance, love, and strength.
Caring comes first. It
is a spiritual gift, but I believe most humans have the ability at least at
some level. I hope my middle section
gave you a better understanding of what dementia is and how it can affect a
person. Now comes my request for
acceptance and love.
I am not a guest speaker from some faraway place. We are members of this body of believers. I know that there are others within our body
that are on the dementia journey. There
are also others fighting different physical or mental challenges that need our care.
I said in the beginning that I am a
primary caregiver, but we need to be surrounded by caring people.
Please be patient and kind.
Set expectations gently. Don’t be
afraid to enter conversation but be understanding. Check out facts with me if you are going to
be acting on them. There is no intent to
lie or insult or be inappropriate. Do
not keep records of being wronged.
Mistakes will be made. Promises
can’t always be kept. As the disease
progresses the person needs those beside them to replace all their senses as
well as logic and reasoning to keep that first important question, “Are they
safe?”, as a yes.
I also chose one scripture from the lectionary today that spoke
to me as I considered our journey. It is
what the children’s message was meant to support. Dementia attacks the brain. The brain is part of our body. Our body is but a shell. Within this shell lives the spirit of a child
of God.
2Co 4:13 But we continue to preach because we have the same
kind of faith the psalmist had when he said, “I believed in God, so I spoke.”
4:14 We know that God, who raised the Lord Jesus, will also
raise us with Jesus and present us to himself together with you.
4:15 All of this is for your benefit. And as God’s grace
reaches more and more people, there will be great thanksgiving, and God will
receive more and more glory.
4:16 That is why we never give up. Though our bodies are
dying, our spirits are being renewed every day.
4:17 For our present troubles are small and won’t last very
long. Yet they produce for us a glory that vastly outweighs them and will last
forever!
4:18 So we don’t look at the troubles we can see now; rather,
we fix our gaze on things that cannot be seen. For the things we see now will
soon be gone, but the things we cannot see will last forever.
2Co 5:1 For we know that when this earthly tent we live in is
taken down (that is, when we die and leave this earthly body), we will have a
house in heaven, an eternal body made for us by God himself and not by human
hands.
Whether that tent is healthy or not does not diminish the
fact we are children of God. The value
of the spirit within that shell remains constant. The books on dementia often remind the
caregiver that the person they love is still very much there. They just can’t express themselves.
This disease takes much away but it cannot touch this. Our bodies are only a part of who we are on
earth. I can get sad that our retirement
won’t include the experiences that I dreamed of, but that is focusing on the
shell. Scripture tells me there is joy to
outweigh these troubles.
Alzheimer’s has no cure.
I see surviving Alzheimer’s not as extending life but as focusing on
having the best life possible given the state of our earthly tent. We can focus on what we have lost, or we can
focus on what we have. I choose the
later. I sang words before the message
that embrace this thought. We are up
against a struggle. Dreams have been
shattered. Fear and uncertainty are continually
knocking at the door of my thoughts. In
all this I know God has claimed us both as his own. We are children of the King. We can live in joy despite it all.
I feel very blessed we are living in St. Croix County with
all the supportive programs they provide.
I feel blessed that our church has people that are trained in the effects
of the disease and I am proud that we hold the designation as Dementia Friendly. I feel very blessed to have supportive friends
and family. Today I feel especially
blessed that Rev Dawn gave me the opportunity to share our story with each of
you.
I chose “Just As I Am” to follow the sermon. As you sing the final four verses of this
song I’d like you to view it a little differently. We are the hands of Christ. Put yourself in that spot and hear the
members of this church singing it to you.
I come to you just as I am. McQ
comes to you just as he is. Each of us
come to this place bringing all kinds of shortcomings because this earthly
experience brings them on. Our response
to each other can be a higher way if we listen to what Paul taught. Caring comes first!
“Love is patient, love is kind, it isn't jealous, it doesn't
brag, it isn't arrogant, it isn't rude, it doesn't seek its own advantage, it
isn't irritable, it doesn't keep a record of complaints, it isn't happy with
injustice, but it is happy with the truth. Love puts up with all things, trusts
in all things, hopes for all things, endures all things. Love never fails.”
Hold that in your thoughts.
Remember that the soul isn’t touched by any physical disease. When you look at someone, no matter their
physical condition, you are looking into the eyes of a child of God.
We are a church for all generations. The older generation will be faced with this
disease in growing numbers. Every 65 seconds
a new person gets Alzheimer’s Dementia.
In this message (in 20 minutes 18.46, in 15 minutes 13.84) get it. We need your caring, acceptance, and love for
us. I offer you my care, my acceptance,
and my love in return. I am committed to
live lives of victory knowing at the end of the story God wins and we are his
so that means we all win. I call that
surviving at its finest!
Thank you for listening.
Amen
