Grace

Grace is as infinite as its Creator. It is the product of God’s love. But then, love isn’t just an attribute of His––He IS love, as 1^st John 4.8 tells us. So, from His infinite being of love, flows His infinite grace. Paul says to Timothy “And the grace of our Lord was exceedingly abundant, with faith and love which are in Christ Jesus.” (1^st Timothy 1.14)

1^st Corinthians 1:3  “Grace to you, and peace from God our Father and the Lord Jesus Christ.” The apostle Paul uses this phrase repeatedly to greet the believers in his writings, 2^nd Corinthians 1.2, Galatians 1.3, Ephesians 1.2, Philippians 1.2, Colossians 1.2, 1^st and 2^nd Thessalonians, and more. Peter and John also pair these two words, as partners that walk together.

When we walk in grace, we have peace with God, and with our fellow man. Grace is the oil that anoints us to walk in peace. It quiets the squeaking hinges of our lives, those sticking points between difference of view or opinion. It relieves the stress of interpersonal relationships, if we just avail ourselves of it rather than having to be “right”, or demanding our way.

I find that I must “grow in grace” as I walk this path of wife/caregiver. There are more and more times when I must stop myself from stressing out, and reach for more grace, as I have to repeat my words, explain in simpler terms, or just show patience in a situation. I have to choose not to be offended that I am not understood. I have to remember not to raise my voice in irritation. I have to walk in grace.

How many times has my Father in Heaven been patient and gracious with me, when I chose not to hear Him, when I chose not to understand Him, when I chose not to do what He designed for me to do? I am humbled at the thought. Humility (bowing before my All Mighty, All-knowing, Father) brings me more grace… James 4.6 says, “He gives more grace… God resists the proud, but gives grace to the humble.”(Originally found in Proverbs 3.34 and also found in 1^st Peter 5.5)

Looking at the Hebrew word for grace חֵן “chen,” I see that it means favor, charm, elegance, and acceptance. Do I show favor and charm, even elegance in my responses? Again, I am humbled at the thought, that my Father shows me favor, and treats me with charm and His elegant love, even when I am wrong, and sinful, and disobedient! WOW! What a thought!

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Being Honest and Vulnerable

My husband has Parkinson’s. His left hand shakes–a lot. Is it pathetic that I am irritated with him when his hand shakes the whole dinner table, or keeps me awake at night?

In the night, he has bad dreams, that he cannot breathe, or that he is dying, or that he can’t find anyone he knows. Is it mean that I don’t like it when he wakes me up to have me bring him back to reality and hope?

He works hard sometimes, and his muscles get achy, so every night, I give him a rubdown with a cream that contains essential oils. Is it too selfish that I sometimes want a massage, too?

We have ample access to a blend of essential oils that makes him happier, sharper mentally, and easier to get along with. He won’t use them, especially if I mention his oils. I don’t understand how he can prefer to be angry and confused.

Often now, he gets confused about words, or where we are, or what I just said––twice, and I get stressed, trying to help him understand. Why am I so unloving? Maybe it’s because he gets angry with me if somehow, by understanding, I make him think he is confused.

Begin Again

­He walks in silence through the house, then muttering under his breath, he turns to look out the window. Still snowing. He dons his work coat and fishing hat, and muttering some more, wonders aloud who moved his gloves. He roams from room to room, only to return to the spot where he began. There are his gloves!

Returning from shoveling while the snow is still falling, he staggers in almost an hour later, shaking with cold. Glowering, his face more cloudy than the sky outside, he removes his gloves and breathes heavily onto his cupped hands. Leaving his coat and hat on, he walks to the coffee pot to get a hot drink. Then taking his cup to the table, he sits heavily and sighs deeply, arching his back on the chair. He reaches for his stash of cookies and munches on one after another as he sips at his coffee. He takes out his phone and begins to read from his Bible app, and type his notes into it.

An hour passes, then a second, as silence reigns. His coat is still on, although he has finally removed his hat. Time has passed without his knowledge. He glances at the clock, but takes no notice of its information, and turns again to reading on his phone, and tapping his notes into it.

Later, his attention is distracted, and he begins to poke at his crotch.  Suddenly, he jumps up and almost runs to the bathroom. He is there for awhile, and the toilet gets flushed 5 times. He finally can be heard to wash, and he returns to the table where he was reading, this time removing his coat and hanging it on the back of his chair. But this time, he can’t seem to settle into his meditation, and soon gets up, looks out the window, muttering about all the snow, dons his coat and hat, and starts looking for his gloves again.

 

 

Gimme Five

“Today we are playing ‘Gimme Five,’ ” I say, as I set up the white board. With a dry erase marker in hand, I ask for them to give me five words in our first category — food.

“Cherries,” says one; “Cheese,” says another. “My favorite is cake!” someone else speaks up. As I write, I notice that all the words so far begin with “C,” which I point out to them.
“Let’s see if we can find two more food words that begin with C.” So, “carrots” and “cabbage” finish up our first list.

We wander through various subjects–desserts and girls’ names, occupations and pastimes–stopping now and again to dredge up memories that are triggered by some word: apples and apple pies, made and enjoyed. White-of snow and shoveling, and the cold that comes with it, and even the white marshmallows in our hot cocoa when we go in. Most of the residents who are gathered there are fairly lucid, and enjoy this word play.

Then she stumbles in with her walker, and plunks down in the middle of the assembled group. She never plays word games with us; indeed she seldom joins us for any activities. All we ever hear from her is: “Is there a bus ride?”; “Where’s my food?”or “Can I have some hot chocolate?” Recently, she hasn’t been speaking much at all. Now, she sits, just listening to us play our game.

“How about things that are yellow?” I finally ask, as we wind down our time together. “Give me five things that are yellow.”
“Butter.”
“Sunshine.”
“Flowers.”
“Lemons.” Various people call out their answers. Then silence. No one can think of a fifth yellow thing.

“Indian Summer,” I hear the soft answer. I turn to see who has spoken, thinking how impossible that she would be the one expressing such a precious thought.

“What was that?” I ask, hoping she’ll speak up this time.

“INDIAN SUMMER!” she says so all can hear. Once again, silence reigns as I write, with tears in my eyes. Then from all over the room, I hear comments of “beautiful” and “Wow!” as we all contemplate the depth of her thought and her ability to express it.

It was the perfect ending to a great afternoon.

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This happened in mid September, and that year we had a true Indian Summer, as the golden sun slowly withdrew its strength, but still blessed us with warm days. We all held on to those beams, like a fading life grasps for meaning in its last days. She passed less than 2 weeks later, but I will never forget that wonderful afternoon, when she understood and graced our day with such a beautiful thought.

Tangled Yarn

I walk into her room and find her knitting, as usual, dressed from head to toe in shades of purple, her favorite color. She looks up at me, and puts down the soft grey and red neck scarf she is knitting for her grandson. I ask if she wants to come join us for group activities, but she declines, emotion and anxiety written all over her face. She says she wants to go home to Philadelphia; she wants to drive there in her car. I gently remind her that she is getting older, and that would be a very long, difficult trip at her age, and alone.

“You’re right, of course,” she sighs. “I know I can’t go, but still, I want to.”

She continues, “I know I need to stay here, where they found me a room. It’s a beautiful place, and a nice place to live, but it just isn’t home.

“I think I could still live on my own,” she says, almost defiantly, “but they are always worrying about me. I could even live with them, like I did for awhile, but they have their own lives, and they are always so busy. They just don’t know what to do with me,” she says, tears coming to her eyes.

On and on she talks; ten minutes pass, then twenty. With glowing face, she speaks of her house in a small town nearby, how she lived there alone after her husband was gone; how she taught school from there, and loved living in that small community, where everyone knew everyone else. Emotions play over her face, as she recalls her dog, pointing to her own painting of him on her bedroom wall. She tentatively tests out the thought of attempting life alone again, but discards it as impossible now.

Bit by bit, layer by layer, she thinks and talks, straightening out her tangled thoughts, like stroking her fingers through tangled yarn. Finally, she looks up, misty-eyed, and says, “I guess I should just be glad I have this place. It is really beautiful, and I’m fine staying here. They take good care of me, and let me sleep-in until I want to get up in the morning. And I have you to talk to.”  Then there is silence, as we sit together and just ponder.

She finally looks up and says, “So, what are we doing this afternoon?”

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Keeping a group involved in activities, I had little time to go sit with her and let her talk, but when I did, I felt so blessed, as I watched her untangle her own scrambled thoughts. Many times, when we see our loved ones confused and frustrated, we forget to just let them vent. So much anxiety is caused by the confusion in their brains, and if we can say just enough to get them started talking, maybe we can encourage them to straighten out their own thoughts, so they can have a sense of peace and strength about their lives.

One Last Dance

He walks with all the dignity of a professional, with the well-groomed look of a doctor.

“Is he a resident or a physician?” I ask. “He looks so professional!”

“That is a resident,” says my new supervisor, as she walks over to introduce me to him. He greets me with a grin and a handshake, “Happy to meet you,” he says.

Over the next several months, I see varying emotions in him: adoration for his faithful wife who comes to have lunch with him every day; flirtation with some of the ladies who are also residents; frustration at not understanding how to fill in a prescribed space on his page with paint, but content to string beads. He loves to carry the watering cans out to water the garden with staff and other residents.

One day, I hear of a co-worker who got a severe skin burn from his overbearing grasp, when he was angry and not willing to do what she had asked. Later, I learn that he hit another aide in the face with his fist.  HOW? WHY?!  I cannot imagine this polished professional man capable of harming anyone!

I look at his chart, maybe I’m not understanding something about this man. I see that he was once a psychiatrist, a very highly trained and respected man, but now sometimes he cannot even remember his own name. He doesn’t remember his wife some days, or at least that he is married to her. How terribly frustrating that must be!

Several months pass, with varying reports of conflicts with staff. I don’t ever fuss with him, but prefer to slip my hand into the crook of his elbow, and instantly, he is a gentleman with me.

He struggles to walk some days, but he loves music, so we take him with the others to a different living area for a musical event. Halfway through the concert, he gets restless, stands up and shuffles toward the exit. I cannot let him leave alone, so I step in to redirect him. As he resists, I recall what has happened to others who were injured trying to work with him. Instead of talking, I slip my hand in behind his elbow, so he can escort me. He grins. “Shall we dance?” I whisper, and he leads our lovely waltz, as we move down the hall to the safety of the Memory unit.

I comment to his wife a couple of weeks later, as he lies comatose on his bed, about how I was able to avoid that recent conflict with him, and how much I had enjoyed dancing with her husband. “Thank you for sharing that with me,” she says. “When he began to have memory problems, we took dance lessons. That was the last of our good times together. I’m so glad to know he still enjoys dancing!”

A few days later, he passed, but I’ll never forget that one last dance.

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In my experience, those who have Alzheimer’s or another form of dementia often exhibit anger. Even meek and mild ladies, who would never hurt a fly, lash out at a family member or caregiver, offending them verbally, accusing them falsely, or possibly wounding them physically. I believe that, being in such a state of confusion can lead to great frustration, which can cause them to vent angrily. They feel angry at themselves for not being in control of their mental processes, or for being too forgetful, so in an effort to feel in control again, they lash out.

One way to deal with their exasperation is to treat them with such respect and sweetness as to dissuade them from their angst. Reverse the roles for a moment, and let them feel in charge of the situation. Let them feel empowered to change the outcome of a challenging circumstance, while ensuring their safety and your own. You can offer suggestions about what they want, or intend to do, giving them a chance to redeem themselves without an angry outburst.

Still There Inside

She stands with her arms folded, pacing a few steps now and then, in the doorway to her room. I invite her to join us for a game of balloon badminton, and a movie.

“No, I cannot leave the little ones that are here. One is sleeping and I can’t just leave them– what if they get out? What will I tell their parents?”  I have heard it all many times before. That is her answer almost every day.

I step inside the room and look around to see if another resident has decided to take a nap on her bed. No one is there.

“Well, they were just here!” she says; “You can’t see them, but I tell you, they are here, and I cannot leave them. You’ll have to get someone else to go with you.” And she turns away.

I check with some other residents, some of whom accompany me to our activity circle time. Her daughter comes in later, and asks, “Why is my mom always in her room, and not out here doing activities?” We try to explain the scenario, but the daughter doesn’t seem to accept our answers, because her mom has never done babysitting, and she never tells her daughter such stories. She takes her mom out for lunch, and they are both really happy about that.

Later I check with her, and she gladly comes with me this time, when I promise her a cup of coffee and an afternoon snack. She is even somewhat talkative, vaguely sharing in the discussion of some of the memory triggers we have that day.

As our afternoon winds down, I announce that I will no longer be spending this kind of time with them, as I am going to be spending more time with my husband and teen-aged daughter who need me at home. Some look on with apathy or without understanding, while others are sad. Some even start to cry and say they will miss me, and “what will we do without you?” I get a little emotional.  She doesn’t seem to comprehend or respond my message, but asks me to help her get “home.” As I walk down the hall to show her to her room, she takes my arm and pats it, saying, “We do what we have to do, even if it is hard. I know you will do fine, and everything with turn out alright.”

Earlier, she was having delusions, which are her norm; but in that moment, I realize that the wonderful, caring, mothering woman, who seemed so delusional a few hours before, actually understood and reached out to comfort me in my emotional farewell.

_________________________

We have to see past the delusions and confusion, and seek out that person who is still inside, affirming their existence just as we would any other person. Human life is worthy of being treated with dignity, even through the fog of dementia.

A Glimpse Inside

She stops me, as I am leaving for the day, saying that she has a problem, asking me to help her “find her place.” I wonder at that, since I know her as one who can always find her room, and because it is dinner time, and she should be headed the other direction, but walk with her.

When we get to her room, she sits on her bed, and gestures for me to join her. She begins to cry, and says, “I have this problem, and I thought maybe you could help me. I’ve lost my mother and my father; my kids are all grown and gone, and I am here alone. The problem is that I have lost myself, all the things that I am supposed to be, or to do, I can’t do now. I don’t know what to do.”

I try to comfort her, tell her how glad I am that she is here, and how much I enjoy knowing her. I speak cheerfully about her daughters, and how I knew them in high school, but that I never got to meet her back in those days. Immediately she brightens, “I’m so glad I got to know you here; I need you now!” Smiles and hugs.  And she happily returns to the dining room for dinner.
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I felt so privileged to be trusted with that little glimpse inside her mind, as she struggled, knowing that she was no longer capable of choosing what to do with herself, her time, her life. She trusted me to just be with her, to feel her pain, her mental anguish at being lost. We just need to listen, to hear with new ears, without expecting anything, enjoying each moment for just what it is.

Before I could start working in the Memory unit, my new supervisor required that I read a book that had shown her a great deal in how to work with this population:  Creating Moments of Joy, by Jolene Brackey. If you are a caregiver for someone with Alzheimer’s or another type of dementia, I highly recommend this book to you. It is an easy-read, with snippets of wisdom from years of experience in very short chapters, like notes from a diary. It has been a real blessing to me, giving me insights about “just being there” as I gained my own experiences in the field.

One life, many paths

I am many people in one, and the many facets of my life have taken me down many paths, sometimes different paths at the same time.

I am a wife. We have been married for more than 40 years, shared more than 30 homes, and raised 6 children– all female! We have traveled full-time for 4 years, singing together with his twin brother across several states, while raising 3 of those six. That necessitated us teaching them as we traveled, and so I also became a homeschooler.

In the past year, my husband was diagnosed with Parkinson’s, ascribable to his tour of duty in Viet Nam, exposed to Agent Orange. I see that my future includes being a caregiver to my spouse, but that comes as no surprise, as I have already been a caregiver, both in my home and in a senior living facility.

My parents required assistance for several years, leading up to the time of their decease more than 10 years ago. We shared a home with them, and I was able to be the 24/7 caregiver they needed. In so doing, I gained the expertise I needed to be employed in the senior healthcare industry for the past several years. During this most recent stint, half of my time was spent in the Memory unit, among those with dementia and Alzheimer’s, whose mental acuity is faulty or unraveling. I gained many insights into their care and life maintenance, while I often watched their families writhing in despair. I hope I can be strong, as I face the years ahead with my beloved husband, Parkinson’s sapping his strength, and possibly stealing his thoughts. I pray for wisdom and strength for the days ahead.

If you, too, face the days and years ahead with the threat of the cognitive and physical breakdown of a loved one, I wish to come alongside you, take your hand, and walk this path with you. There will be times when I will need you as much as you need me, and together, we can make it through! When we know there are others facing the same kinds of challenges that we are experiencing, we can stand a little taller, endure a little longer, suffer a little more, knowing we are not alone.