life lessons learned from dementia

sunsetHard experiences often teach the best lessons. Helping care for my elderly dad triggers childhood memories and reactions, fears for the future, and all the worst of me at times. The positive result is time to reflect and apply what I learn to other areas of my life. I have a lot to learn(!), so here are my first three lessons from my recent visit:

Even when I can’t “fix” it, I can still serve.

I would like nothing better than to cure my dad’s Parkinson’s and dementia, but I can’t. Medications, therapy, visits, prayers – other than a miracle – will not “fix” my dad. However, I can serve him. True service is determined by the one being served. He needs simplification in language and task, and continual and creative adjustments as his abilities change. He also needs my patience when he would prefer to do something (slowly!) himself and my respect even when he is confused or forgetful. Those last two are much harder for me.

Besides my dad’s illness, there are many things I’d like to change in this world: peace in place of violence, an end to inequities and inequalities, reconciled injustices, healing for hurts, desperation to encounter hope. I can’t fix those things either… but I can serve. I can go where I am called, give my best in all I do, and think of others rather than myself first – one day at a time. I can consider what will best assist others rather than what I want to do or what is easiest for me to offer.

I don’t have to be right.

I learned quickly that I cannot win an argument with a dementia sufferer. To the person with dementia, his perception is the only thing that is true. My dad’s delusions, paranoia, and denial are his reality. I cannot reason, argue, convince, or win him over to my perspective. I can only help him with what he believes.

That is often true with other people also. Even if we see the same scenario play out in front of us, our individual personalities, backgrounds, and values give us different perspectives of that incident. I can discuss, persuade, or pressure for hours, but I will never be the one who is right. I am learning – slowly – that I don’t always need to be right. My truth is often not the one truth in a situation. I can only help people if I care about and work with what they believe.

Attitude is powerful.

You would think I would know this one by now. I cannot change my father’s attitude, but I can change mine. I can look at his disease as a glass half empty and focus on all he has lost and who he was, or I can view the glass as half full and concentrate on what we can still enjoy together – neighborhood walks, quiet rests on a park bench, joy at watching fat rabbits in the yard, a New Mexico sunset streaked across the sky. He can sense my attitude, and he reacts accordingly.

He is not the only one affected by my choice of attitude. My family, friends, and co-workers also react to my half-empty or half-full mood. My actions may be good, but my attitude has the most powerful influence on his response.

These are the three lessons I am working on this week. I will share others in the weeks ahead, but this is enough for me for now!

How about you… which of these three is hardest for you?

What have you learned about serving others, caring about what they believe, or choosing the right attitude? 

wait is a four letter word

3 oclockThe alarm went off at 3:00 AM, only a few hours after my head hit the pillow. Begrudgingly, I forced myself awake and moving to catch the 6:00 AM flight. At least the effort and pain of this early hour meant we would arrive to Albuquerque by 10:30 AM and enjoy a full day with my sister and my dad.

The departure to Houston was uneventful. We even received upgrades for that first flight, and we were about to arrive on time when the tower denied our landing because of fog in the area. The pilot first communicated that we would circle above the airport and wait for permission to land. Fifteen minutes later, the pilot informed us that we did not have enough fuel to wait any longer, and we would have to land at a nearby airport.

That detour cost approximately 60 minutes in the air there and back and another 40 minutes on the ground for re-fueling. Our connecting flight was long gone by then. Oh well, we thought, we could just wait for the airline to re-book us on the next flight.

When the automatic re-booking option came through on my phone, we would be arriving in Albuquerque… at 11:00 PM(!) with a detour through Denver. UGH! Basically the whole day lost, WAITING, sitting around in airports. Not my idea of fun.

We stopped at a service desk to check for better options, and I asked some friends to pray that we might find an earlier flight. The texts back and forth from my friends made me laugh and lightened the mood. In addition, they offered suggestions for using the waiting time:

  • Rest and relax
  • Stop at Starbucks 🙂
  • Eat something
  • Write a blog post on waiting!

We also walked, shopped, read, and enjoyed some “Face-Time” with our children. We eventually found an 8:00 PM arrival. All in all, the day was long, but we were safe and not much changed as a result. It did not take much effort to fill the time, and it helped to not get angry or irritated with people or circumstances along the way.

I remembered – once again – interruptions and delays are an inevitable part of life. We wait for relationships, jobs, disease cures, prodigal children to come home, and bucket-list dreams to come true. I can’t control them, but I can control my attitude as I wait.

How do you handle interruptions and delays in your life?


 

Photo credit: amyvdh / Foter / CC BY-NC

who will he be today?

Old Man 14037671409_bbb2f90095_cOne day he seems almost normal – making jokes, telling stories, expressing gratitude, communicating lucidly.

The next day he feeds animals that don’t exist; is irrationally paranoid and fearful, freezes in the middle of thoughts and sentences, and cannot remember how to accomplish basic life tasks, how old he is, or even his daughters’ names.

I do not know which father I will greet each morning.

That is dementia.

I have decided it reminds me of living with a teenager – one moment “almost” mature and grown up: making wise decisions, communicating with confidence and respect, interacting as an adult peer. The next moment acting like a child again: thoughtless of action consequences, emotional or surly, insecure and overly dependent. A roller coaster of crisis and climax.

That is dementia.

I am learning again how to help. Stay calm and do not escalate the situation by attempting to reason or argue. Use a quiet, clear, slow voice, respect, and a gentle touch. Do not let his response trigger my past father/daughter issues; do not react defensively, with anger, or with impatience. Do not surprise him with a change of plans or expect him to learn something new or hope for consistency from day-to-day.

I long for a standardized to-do list that I can follow faithfully each day. A defined cause and effect that I can rely on. A “2 + 2 = 4” dependability.

Dementia does not offer that.

Instead I need to face each day with grace, flexibility, prayer, and love-motivated sacrifice of my wishes and desires.

Unlike rasing a teenage, there is no chance that this situation will improve, that he will grow out of this stage, that he will get better. I can only anticipate more of the same or something worse. He is not making progress; he is declining towards the end.

That is dementia.

Who will I greet in the morning? An elderly man. A child of God. A test of my character. My father.

How do you face the challenges in your life that will not get any easier? 

_____

**If you are a person of prayer, please pray for my father and my family… wisdom for future decisions, strength for daily choices of love and sacrifice. Thank you.

“Ok, my dear. Thank you.”

terry and dadMy dad has never before called me “dear”.

That word brought tears to my eyes. Such a little thing, and yet a such big emotional impact.

We are spending a few weeks living with my dad – helping him with daily care, giving my sister a few moments of respite from her herculean job of care giving.

I was initially nervous about staying here with him. I was not sure about his abilities to function and interact. I worried that he might not want my help or that I would not know what to do. I haven’t lived close to my elderly grandparents or parents, so am not very comfortable with their lifestyle and needs.

My dad suffers from Parkinson’s disease, dementia, and alcoholism. My dad who was always the extreme self-made-man, strong character and body, intelligent, and absent of affection has become a very dependent, weak, forgetful… sweet and appreciative old man.

He certainly has his moments of confusion, frustration, and stubbornness, but in general, he is not the rough, tough, intimidating father he was before.

Caring for my dad is not easy. It requires patience, flexibility, research, and a lot of new perspective. It means different standards, norms, and routines that would have been unheard of in earlier years. Lucid conversations mixed with confused anxiety. Time, worry, initiative, firmness, creativity, and continual second-guessing and questioning decisions and choices.

Dad’s care is the epitome of living with tension – giving respect and still enforcing new restrictions, allowing for independence and restricting freedoms, offering choices while simplifying options, providing quality of life and ensuring safety, protecting privacy and dignity while also hovering with care.

I do not have any official training for the role of elder care-giver, but care giving is training me. I am learning to slow down… lowering my accomplishment expectations for each day, choosing my words carefully and enunciating as I speak, walking protectively at his side, moving with tenderness and intentionality. None of that is easy for me.

The most important lessons are a repeat of earlier experiences – living fully with the realities of each life-stage and finding contentment there. Just as I learned to overcome fears, serve others, and treasure special moments with infants, toddlers, teenagers, and adult children, I can do the same with my dad.

Every person is important. Every life is valuable. I consider it a privilege and a joy to care for him. I am willing to help my dad without expectation of getting anything in return, but every now and then, I receive a special gift – a “thank you” or a “dear” – from a special person who has nothing more to offer. It is enough.

What has been your experience is caring for elderly loved ones? Do you have any tips for me?

What was it I needed to do?

Photo credit: pni / Source / CC BY-NC-SA

Photo credit: pni / Source / CC BY-NC-SA

Have you ever gone into a room and forgotten what you went in there to find? Ever forget someone’s name? Ever spend time looking for something because you couldn’t remember where you put it?

These are normal events for most people. At my age, however, they are becoming more worrisome. Some days I worry about losing my memory.

My dad has Parkinson’s and dementia and it saddens me to watch him struggle. I am reading books about dementia and memory loss diseases to learn how to help him, support those who do his care-giving, and understand some of his challenges.

I am also learning how to prevent or at least diminish the potential for my own memory loss. This past week, I read a great biography about a daughter caring for her dementia-affected mom: Inside the Dementia Epidemic: A Daughter’s Memoir. Besides communicating honesty, empathy and encouragement, the author, Martha Stettinius, offers great appendices of resources – one contains suggested antidotes for dementia.

This is a summary of what she writes:

Exercise

Studies show that thirty minutes of daily physical activity (housework, walking, weight training, etc) may be our strongest weapon against Alzheimer’s and other memory loss diseases. Aerobic exercise increases blood flow to the brain and stimulates growth of new brain cells.

Mental Stimulation

Add social community and mental stimulation to exercise and you have a great combination. Work, join a club, volunteer, travel, play games – especially crosswords or puzzles, learn to speak another language or play an instrument. Do these things in relationship with others and your brain continues to make connections too.

Eat Right

Nothing new here right? A good diet helps with a lot of things! Eating dark veggies and fruits, cold water fish (salmon, tuna, mackerel) and nuts (almonds, pecans, walnuts) also decreases the risk for memory loss. Vitamins E, C, and B12 may also help. Cut back on sugars and carbs wherever you can.

In addition, Stettinius suggests that you get checked if you have vision problems, sleep apnea or an infection that damages neurons. Researchers consider each of these as possible catalysts for dementia and Alzheimer’s.

This all seems pretty basic and these are health tips I have heard before. I am just a bit more motivated to take them seriously each time I hear about someone else caring for a loved one who suffers memory loss… and that is often. There are 35.6 million people with dementia worldwide today and analysts expect that amount to almost double by 2030 to around 66 million and double again by 2050 to approximately 115 million.

I am going to do what I can so that I do not add to that number.

How about you? Do you need to change some habits? Or did I already ask you that?

grief comparisons

sadness

Photo credit: Wendy Longo photography / Foter / CC BY-ND

It has been three months since my mom died. Sometimes it feels like years ago. Sometimes it feels like yesterday.

I have not been able to write a blog post since that day. My mind has been foggy, scrambled, gray, and unclear. Some days my heart felt heavy, sad, and lifeless. Other days, I have sensed the warmth of her memory in the flowers and sunshine that she loved so dearly.

During the past months, some friends have asked how I am doing and others have kept an awkward distance, unsure of what to say.

Family members have all processed their grief uniquely, sometimes drawing close to each other, sometimes pulling apart because of tensions, anger, or a desire to process pain alone. Some have cried; others held their emotions in check; still others could not find tears even when they tried. Some went right to work arranging details; others were paralyzed by their loss.

In these three months, numerous other friends have also lost loved ones – children, siblings, parents, friends. Sometimes the deaths arrived as expected, peaceful, a long-awaited transition to a better place. Other deaths came suddenly, violently, shaking family foundations of faith and security.

Some of my friends experienced death much like I did… at the bedside, providing care and comfort, counting the minutes as they turned into hours. Other friends had no opportunity to sit nearby at the end or intentionally chose not to go there. Some appear unaffected by their grief; others are clearly rattled, and others experience a bit of both depending on the day.

I have found myself occasionally comparing my particular experience and my emotional response with others. However, I am learning that we cannot compare our different experiences with death any more than we can compare our different experiences with life. 

There is no right or wrong way to do this. There is no standardized approved amount of time, feelings, involvement, or impact that death brings to a person. Each birth, each person, each death is unique.

And so, for me and for you…

Take all the time you need.

Feel whatever it is you feel.

Do what you can and leave the rest.

Give grace, especially to yourself.

Chose safe people and safe places.

Sleep. Cry. Dance. Work. Laugh. Yell. Remember.

Don’t judge.

Don’t compare.

It is grief and so it will be.

∼∗∼

we deserve more

fifty shadesValentine’s Day is not my favorite day of the year. I have already mentioned some of the reasons why in an earlier post. This year, however, is worse than ever. My Facebook feed is full of posts about the upcoming movie “Fifty Shades of Grey” based on the book by the same name.

I have not read the book and I will not go see the movie. It holds no attraction for me. As a matter of fact, the basic idea of the content turns my stomach and makes me very angry and very sad at the same time.

I cannot avoid speaking out against this movie. Most movies would not get my attention in this way – my family will vouch for the fact that I sleep through most movies. However, it seems my WORD for 2015 is inspiring me to write this post.

I chose EMPOWER as my WORD for 2015.

All people deserve to be loved, respected, and empowered
for all the best that God created them.  

Every person is created with value, dignity, purpose and incredible power to love others and have a positive influence in our world.

One of the greatest threats to true, healthy power is disrespect, devaluing, and abuse of women. I have written about the need for advocates in the past and the amazing power that is attained when men and women work together.

Fifty Shades of Grey glamorizes disrespect, lust, abuse, manipulation, and violence of a man over a woman. The movie degrades both men and women alike, portraying self-centered, hurtful, and power-abusive attitudes and behaviors… and worse yet, the movie will premiere on a day that is supposed to honor love.

If you love yourself, your friends, and/or a special person in your life, please speak out against this movie and do not spend your time or money going to see it, not even for “curiosity”. It is not worth it.

It will not empower you to be all the best you can.

It will not empower anyone you take to see it.  

It breaks my heart to think that of how this movie – and others like it – negatively influence and distort the dreams and expectations of people searching for love today. I think of my own children and I want a very different experience for them.

As a woman who has been lovingly married for almost 30 years, I can tell you there are many greater ways to express true love. Do not settle for this low view of “love”. Both men and women can do much better than this movie. We deserve so much more.

What says love and respect to you? How do you help empower others?

powerless

IMGP1826The irony of it.

I chose my word for 2015 – empower – just a few weeks ago.

While we are still in the first month of the year, I found myself in a situation where I had no power at all.

My mother was on hospice care, and I had joined my siblings and my aunt in her end-of-life care giving.

It was a sacred time – simultaneously a sweet privilege and a suffocating responsibility to accompany her on her journey.

We wanted to beg her to stay, while at the same time we pled with God to mercifully take her quickly because she was so very ready to finish living.

We laughed with her sense of humor, we debated the best choices for her care, and we wept as we watched her suffer.

Her lucid moments provided us precious memories; her confused thoughts and agitated actions forced us to struggle for understanding and responses of grace.

Both her body and her mind were failing, but her faith, her gratitude, and her fighting spirit continued strong.

We imperfectly attempted to give her peace, encouragement, and comfort. We told her we would miss her, but that we would be ok when she chose to go.

There was nothing else I could do. I could not control the process. I could not choose the final moment.

I could only remain present, serve, pray, and love.

Those days there was One with great power in charge of the time… and it was not me.

(My amazing mom left us to live eternally with her Heavenly Father on January 19, 2015.)

There are times when power is a gift, and we are accountable for our strength and our influence. There are times when our greatest power is in submitting to another.

It may be that one of the most important elements of empowering others is helping them to discern the difference.

What has been your experience with power or empowering others?

 

My word for 2015: Empower

It did not take a lot of thought to pick my word for this coming year. The idea was on the forefront of my mind almost immediately. In the years past, it has sometimes taken more time and consideration, and I have picked words for attitudes or growth that I needed personally: authentic (2012), courage (2013), and fulfill (2104).

rocket IMG_9382This year I want to focus my energies more towards others. I have received great development, encouragement, and blessing in the last few years. I want to share that with others. So my word for 2015 is EMPOWER.

My husband read this great quote and sent it to me. It fitly describes the purpose for my life efforts this next year.

As we look ahead into the next century,
leaders will be those who empower others
.
                                            Bill Gates

I’m not sure what “empower” will look like for me, but I can guess that it will include a few of these things:

Investing time coaching and mentoring others.

Asking more and better questions and “preaching” less.

Saying “no” to doing anything someone else could do.

Controlling less.

Encouraging more.

Humility.

Paying attention and observing others.

Resourcing others with materials, trainings, and assessments – anything that will build confidence and competence in others to do and be their best.

Praying for others more.

Believing more in others’ abilities and expressing my belief to them.

Celebrating with others.

I envision in-fueling people (family, friends, other leaders around the world) with whatever they need to go places and do things that I can’t even imagine.

I look forward to seeing what they will do. Bring it on 2015!

What do you think EMPOWER looks like? What is your word for 2015?

wrapping up 2014

IMG_1231I have a fun hangover.

All of our grown children came home – plus extras – for two weeks now. People slept in every room of our small townhouse. Imported belongings invaded every counter and every inch of floor space. We saturated days with fun and laughter, adventures, deep conversations, and delicious, not-necessarily-good-for-you food. We delighted in long-standing traditions and created new experiences this first Christmas in our new home. We connected at mind, heart, and spirit. It was an incredibly rich time.

My energy level is a bit low now, but my heart is full.

That seems a fitting condition for the year I christened last January with the word “fulfill”.

These family days together were a dream fulfilled. So is living in this new home and the purposeful work I get to do with my husband. One night at dinner, we all reflected on the past year and answered questions about our greatest challenges and biggest achievements and how we grew or matured or changed through both. I am satisfied with the responsibilities and goals I fulfilled last year and by the choices I made to feel fulfilled personally at this stage of my life. It has been a great year.

There have been hard times too. Death, pain, and poor decisions by loved ones crushed my spirit and drove me to my knees. The aching desire to be present in two – or three or four – places at once has weighed heavier than ever. Community, country, and world conflicts and tragedies have burdened my soul.

And so I consider my word for 2015.

What are my passions? What do I want to do? Where will I prioritize?

I’ve read many a great post about end of year reflection questions and have re-worked some of them for us here.

  • Where did you thrive last year?
  • Where did you struggle?
  • If you had to describe your 2014 in three words, what would they be?
  • What was your biggest time waster this past year?
  • Where did you best invest your time?
  • What, or who, are you most thankful for?
  • What advice would you give your early-2014 self if you could?
  • What one thing would you do differently and why?
  • What topics did you most enjoy learning about?
  • What did you learn about yourself?
  • What was a favorite compliment that you received this year?
  • What is one thing you can do next year to add meaning and relevance?

Maybe you’d like to take time to answer these  – and any other favorites you have – and choose a word for 2015. Find a quiet place, your favorite beverage, put your feet up, and enjoy the process.

I’ll post my word next week. I’d love to hear what you choose!