Life Lessons from Dementia

James 1:27 New International Version (NIV)
Religion that God our Father accepts as pure and faultless is this: to look after orphans and widows in their distress and to keep oneself from being polluted by the world.

 

Over the past 9 months I’ve had the honor of getting to know, serve, and love people who have dementia/Alzheimer’s.  My beloved beautiful Grandma, and Grandma-in-laws, also have/had the diseases.  This is part of what inspired one of my songs: Legacy of Love.

Some people talk about how terrible of a disease it is, and how sad it is getting old.  Trust me when I say, I’ve experienced the reasons people say this.  Changing personalities, difficulty communicating, loss of life skills, anxiety-driven suspicions and anger are only the tip of the iceberg. So I agree, but only to a certain point.

I’ve seen how God can actually use dementia to redeem the world around us.

Personally, working with people with dementia has taught me a new level of compassionate, Christ-like love.  Caring for many people up until their last day on Earth, I’ve learned the value of life up until the very end.

They may change dramatically, but there is still life to be lived and loving relationships to be continued. Even if they forget exactly who you are, you can still have years of enjoyment.

Here are a few things I’ve learned from people with Dementia… 

These lessons can help caregivers, but also can be applied to the rest of life for every person as well:

Social connection is essential for every person.

People with Dementia still get lonely. Even if they forget who you are, it’s important to spend time with them. The emotional memory makes a difference in their day.  Sometimes people change to be almost unrecognizable, but there’s always a way to connect.

Certain things are almost universal:Alzwalk

  • Smiles and laughter
  • Love for family/friends
  • Reminiscing about earlier times
  • Looking at photos
  • Enjoying a sweet treat together
  • Enjoying good music and dancing
  • Enjoying the scent of flowers, delicious food, perfumes, etc.
  • Enjoying the beauty of nature or art
  • Caring for animals or children
  • The satisfaction from purposeful work, such as setting a table, cleaning, baking… even if it’s not quite perfect anymore.
  • Friendly touch: back-rubs, holding hands, hugs

Kindness goes a long way!

People that have no (or confused) memory of who I am or how they know me can still remember that I’m a person they want to be around. They remember that I care, I’m playful and fun, and that I’m full of joy and love! May this be true for every person I meet.

Most of communication is nonverbal.

Communicate accordingly.

Probably about half of the residents I work with don’t have clear verbal communication (either jumbled words, repetitious phrases, not understanding others, or mostly yes/no responses). I can still sense the emotions behind what they’re trying to say, and have a meaningful “conversation” …comforting the sad/confused/anxious, laughing with the joyful, and guiding through next steps if they have a need.

A friendly approach (slow, non-confrontational, not hovering over, greeting) helps tear down defenses. This is made SO obvious by people with dementia (resisting help, aggressive responses, etc.), but emotional defenses are common in everyone, the rest of us just hide it better. If you approach people with respect and care, like you’re on their side, they’re more likely to treat you as an ally rather than an enemy.

Smile! Laugh! Dance! Use friendly touch to show love and care. 

Respect works.

Any. other. way. does. not.

Treat adults like adults, even if you have to guide them through things step-by-step. Scolding, belittling, or patronizing is offensive to any adult (no matter the age or ability), and puts up walls that prevents people from working as a team.

It’s important to get to know people as people, rather than treating them as means to an end. Getting to know someone’s preferences and personality can go a long way towards interacting with them positively.

People like to have choices. If you can help it, always give a choice. This especially helps people who feel like they don’t have much control over their situation. It tells them that what they think, want, and value, matters.

The desire to be useful never goes away.  Allowing people to help, teach, and guide you brings joy at any age. Don’t do for another what they can do for themselves. If they need help, do it with them.

It’s ok to live life at a slower pace.

People have told me I have a lot of patience. Working with people with dementia has grown this fruit of the Spirit exponentially. It’s a beautiful thing.

But, just as important… in this fast-paced culture, they remind me to slow down. To take time to experience things fully through the senses. To really appreciate sweet treats, a nice walk outside, and the process of gardening.  This is something I need.  They help me in this way.

Alzwalk2

Your life doesn’t lose value at the end.

Think about where you think the value of a life comes from.

Is it simply the ability to work?

Or just bring joy?

Can it come from simply existing and so teaching another person to love better? 

Dying well is important.

Hospice can sometimes bring more life to the last part of a loved one’s life. I’ve seen countless people go from totally out of it, to being able to participate in activities and conversations, once hospice gets involved.  It’s a really great service that can help make the end of life better for everyone.

I’ve learned more about the phases of the end of life through this process, and how much better it is to walk through each step with a dying person, accepting however they want/need to walk through it.

We’re all going to die. If given a choice, how would you like to enter eternity? How would your loved one like to? If we face the reality of death early, it will help us to live abundantly and die with grace. 

John 10:10 New International Version (NIV)
The thief comes only to steal and kill and destroy; I have come that they may have life, and have it to the full.

I believe with certainty that if you accept Jesus’ sacrifice for you on the cross, death will be a door to everlasting beauty, joy, and goodness. Will I see you there?

Romans 10:9 New International Version (NIV)
If you declare with your mouth, “Jesus is Lord,” and believe in your heart that God raised him from the dead, you will be saved.
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15 Life-Changing Perspectives on Marriage

“If you want to change the world, go home and love your family.” – Mother Teresa

My hubby and I just celebrated 6 years as a married couple… time flies when you’re having fun! 😉

Over the years I’ve learned perspectives that have changed not only my marriage for the better, but my life.  I wanted to share the best of what I’ve learned so far, to help you on your journey.

  1. Marriage, and my spouse, is a gift from God! Treasure it and treat them as such.
    • (Card written by my friend Marissa Ruper… loved the shift in perspective from what culture tells us!)
  2. Marriage is not 50/50 give and take, it’s 100/100 giving. Always think of ways I can give more to bless the one I love and I’ll worry much less about what my spouse is giving.
    • (Pre-marital counseling with Mark Randall from Cru.)
  3. When I entered into marriage, I decided I would forgive and let go of 7 things my spouse does that I don’t like. I don’t remember what those 7 are, so when my spouse annoys me in some way, I figure it must be one of the 7 to forgive.
    • (Passed on from my friend Valerie Lind.)
  4. When I feel like he’s not being good enough for me, I think of the ways I’m not good enough for him. We both need grace.
    • (Straight from the Lord!)
  5. Having a good relationship is more important than being right.
    • (Ministry school.)
  6. We are on the same team. Fight like it.
    • (Marriage conference.)
  7. Don’t try to change my spouse. Love my spouse as is.
    • (Marriage conference.)
  8. Unmet expectations are the cause of most conflicts. Often these expectations go unexpressed. Express the important ones respectfully, and change the less important ones.
    • (Social work school and counseling.)
  9. Always speak highly of my spouse to others. This shows love and respect.
    • (Becky Arcadi in Cru.)
  10. God and my spouse comes before every other person and tasks. My time, talents, and treasures should reflect this.
    • (Marriage conference.)
  11. We are now one.  Every decision affects the other person. 
    • (Marriage conference.)
  12. There is safety in the covenant of marriage that exceeds all other relationships.  When we’ve confessed before God that our marriage is for life, our trust and unity will increase and we’ll work through challenges together as one. 
    • (Marriage conference and Amanda & Yvonne Gibson.)
  13. Value the differences in my spouse.  God designed them on purpose to refine me and to make us a powerful team that shares God’s love with the world.  The sum is greater than its parts. 
    • (Fellowship Church.)
  14. Love is not a feeling, it’s an interaction.  Love is patient and kind. Love does not envy or boast.  Love is not proud, rude, or self-seeking. Love is not easily angered and doesn’t keep track of wrongs done. Love finds joy in truth, rather than evil things. Love always protects, trusts, hopes, and perseveres. Love never fails.
    • (Scripture.)
  15. We have God. If we seek first the Kingdom of God, all else will be taken care of.
    • (Grandma and Scripture.)

Gratitude and Celebration

What are you grateful for? Have you celebrated these things lately? It’s an important part of surviving service!

I love that my church has a culture of celebration, and embraces passionate gratitude expressed in worship!

Excerpts from Surviving Service: Effective Response to God’s Call for Justice (pages 165, 167)

“The victims of injustice in our world don’t need our spasms of passion; they need our long obedience in the same direction—our legs & lungs of endurance; and we need sturdy stores of joy“ (Gary Haugen, International Justice Mission).

If we want to last in caring for other people, we need to know how to care for ourselves.

We know that the harvest is messy, people are messy, and change takes time. Therefore,
anytime we see even the smallest of victories, we need to celebrate them! Celebrate changes in people, circumstances, communities, and policies. Celebrate things you
helped accomplish, others helped accomplish, and God accomplished. Do so with zeal!

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Celebrate life! Part of actively pursuing self-care is remembering and recognizing the goodness of life, God, and people. Notice the good things out there. Celebrate however you like (as long as it’s not destructive, of course); dance, worship, or have a party! Be thankful. Thankfulness brings joy!

The Harvest is Messy – a lesson in hope and self care

This excerpt from my book, Surviving Service: Effective Response to God’s Call for Justice (pages 158-160), was a helpful reminder to me this month as I worked through some issues in my current (incredibly challenging) helping role.  I hope it encourages you as well!

Jesus went through all the towns and villages, teaching in their synagogues, proclaiming the good news of the kingdom and healing every disease and sickness. When He saw the crowds, He had compassion on them, because they were harassed and helpless, like sheep without a shepherd. Then He said to His disciples, “The harvest is plentiful but the workers are few. Ask the Lord of the harvest, therefore, to send out workers into His harvest field.” (Matthew 9:35-38)

I used to think of the harvest as a glorious final gathering from all the work that had been done. But it is actually pretty rough out there. There are thorns, snakes, muddy areas, and rotten crops to work around.

The harvest is plentiful, but messy. 

No matter how hard you try, you will be affected by those things. It will affect your life in both good and hard ways, so you need to be prepared to work through difficulties.  

A mission trip leader once put it like this: “If you’re not getting hit by the shrapnel, you’re not close enough to the war.”

You may end up taking some things home with you, mentally and emotionally. What you see may impact your relationships and how you view people around you. For survival and longevity in this type of work, it is essential not to allow the problems you encounter to take over your personal life. When you start to see that happening, step back a bit and make sure you take care of yourself.

We cannot bring hope to others when we do not embrace it ourselves.

A friend once reminded me, “People like us tend to carry the weight of the world on our shoulders. Our job is simply to join into the positive things around the world. Don’t doubt in the darkness what you learned in the light.” There is hope, and we need to hold onto it!

Above all, we need to hold onto the joy and hope of the Lord as our strength, rather than any fleeting feelings of success in helping people. 

God’s light is bright enough to illuminate the darkest places!

Supporting through Loss & Grief

I wish I had written about this in my book.  

But honestly I really hadn’t lived it until this year.  As I walk through my own losses and alongside others who have experienced a variety of loss, I’m seeing that people (including Christians) just don’t know how to handle it. I know I’ve grown a lot recently in my understanding! We all have good intentions… but few understand what’s truly needed.

I’ve had my fair share of “foot-in-mouth” moments over the years and even a few recently, but here are some things I’ve learned along the journey…

Don’t be silent about the loss or wait for them to bring it up.

Acknowledge the loss and mourn it with them.  Keep asking how they’re handling it… it will change over time.

Popular opinion is that bringing it up will remind them of the loss.  Trust me, they’re already thinking about it daily… and wishing someone would mention it.  Even if they look like they’re over it or doing just fine, bring it up in quiet moments.  Allow them the option to talk about it or not talk about it in the moment.  (Sometimes it’s just not the place or time.)

If it was the loss of a person, say the person’s name. Continue to honor the person’s life.  Imagine together what it would be like if the person was here. Do this for the rest of your life.

Avoid silver lining or comparison talk.

(For example: “At least your severance is better than others got.” “God has another job for you.” “There’s hope for another child.” “At least you didn’t lose your baby later in the pregnancy or after he was born.” “He lived a lot longer than a lot of people with this disease.” “He had a good long life.”  “We know he’s in heaven.”)

Don’t try to find magic words to make them feel better. There are none. Although your statement may be true… it’s not particularly helpful. Chances are the person grieving has already thought of these things.  They’ll feel your support more if their loss is validated. 

Allow the person to talk about it. Or sit in silence. Mourn with those who mourn. Ask how they’re processing it, and then empathize and affirm what they’re feeling… trust me, that’s the best thing.

Don’t put your timeline on the mourning or think they’ll get over it.

grief(“Gosh that was years ago, why is she crying? When will she move on?”  “It’s been a couple months, I’m sure she’s handling life just fine by now.”)

Recognize the loss will always remain. The experience will change but it will never go away. A new child doesn’t replace another.  A new spouse doesn’t replace another. The loss is still felt.

Offer to help months down the road.  The change will be felt and need to be adjusted to in countless ways for a long time.

Remember, even if you went through something similar, you don’t understand completely.

Reach out to offer your friendship, but listen more than you speak. Share your story if asked, without comparing.

“Let me know if there’s anything I can do to help” is a good starting point, but don’t stop there.

That’s really sweet, but it’s better to offer specific tasks.

(With every loss, there is a ton to do and a ton to think through… Yet the ongoing task of grieving takes up time and energy, and is demotivating to the rest of life.  It also clouds people’s thinking. They’re in survival mode. Chances are someone in crisis or mourning isn’t going to have organized thought-processes enough to figure out what she needs and remember who to ask (or feel comfortable doing it.)

Reach out and ask if you can bring a meal after others stop bringing them. (Then only go in if invited.) Ask if you can mow the lawn. Ask if you can put on a low-key girls night (tentative to the person feeling up to it). Plan something to honor the person on anniversaries.

Check yourself to make sure you’re not turning the person into your personal project to make yourself feel good.

Treat them as a friend, not a charity case. Allow them to do for themselves what they can and want to do.  Allow them to just be and have fun if they’re not up for talking about it seriously in the moment.

If we forget everything I wrote here, it’s ok.  As long as we remember that God calls us to, “mourn with those who mourn” (and remember that mourning is a long process), then we’ll be off to a good start.

Feeling Small in a World of Disasters

Disasters have a tendency to humble us.  We realize how small we are in comparison to the storm, and how little we can do in comparison to the need.  But I assure you, God is big enough.

Excerpts from Surviving Service: Effective Response to God’s Call for Justice (pages 44, 45, 109) —

We know that God goes with us and that He is working through His people. Yet when I see people in need, I sometimes feel alone; I forget I am not the only person who can help.  The question of “Am I doing enough?” should ultimately be redirected toward the Church as a whole, with you as an active part. As the old adage goes, “I can’t do everything, but everyone can do something!” We need to remember that we are a part of the body of Christ:

For just as each of us has one body with many members, and these members do not all have the same function, so in Christ we, though many, form one body, and each member belongs to all the others. We have different gifts, according to the grace given to each of us. If your gift is prophesying, then prophesy in accordance with your faith; if it is serving, then serve; if it is teaching, then teach; if it is to encourage, then give encouragement; if it is giving, then give generously; if it is to lead, do it diligently; if it is to show mercy, do it cheerfully. (Romans 12:4-8)

hazmat

We need to get other people involved! We can only do so much on our own. Get to know other people in your church community who have a passion for [helping]. You may be able to collaborate on projects like fundraisers, donation gathering, [trips,] events, and more.

So, can you give $5 today? Great! That combined with the same donation from ten other people makes $50. You can adjust your budget to give more in the future. Can you use your talent to serve someone today? Awesome! Leave the rest to other people with different gifts. Can you advocate for policies that improve situations in places where you can’t go? That helps too! When giving of your time and talents, focus on doing one or two things very well, rather than spreading yourself thin trying to do everything. God wants to work through all of us. Don’t take joy away from other people by trying to do it all.

ladderOn one of my disaster relief trips, I was the only one brave enough to paint on a tall ladder. So that’s what I did all week! Some of my peers were gifted in caring for babies, which has never been my gifting. So when the homeowner was there, some of them stopped painting to talk with the woman and play with her baby. She appreciated it so much! Was one of us caring for the woman more than the other? Absolutely not! Both gifts met her various needs.

Now to each one the manifestation of the Spirit is given for the common good. (1 Corinthians 12:7)

New Resources to Guide your Heart and Life of Service

(This is my first of many posts in my “Surviving Service” series, which is meant to be a resource for YOU, on various topics relating to living a more purposeful, abundant, and fulfilling life. I want you to become an artist of the heart: interacting with and serving the world around you in ways that inspire hope and compassion, for others and for yourself.)

I wanted to share my new resources with you, which are based on Surviving Service: Effective Response to God’s Call for Justice.

21-Day Service Challenge
Take small daily challenges meant to help you become the loving servant God has called you to be. Are you up for the challenge?

How Should I Serve?
A questionnaire designed to clarify your purpose as a servant and guide your volunteering/giving. 

Feel free to share these resources!

 

With hope & compassion,

Stefanie, artist of the heart