Friday, January 29, 2010

Tunnel Vision


We have a silly tradition in our family. I don’t even now how it got started, but it seems that Jeff and the children decided it was proper tunnel etiquette or something. This is it: we literally scream our way through tunnels across the country! Silly, to be sure- but fun! Here is how it goes: as the tunnel appears, the entire family rolls down every window of the car, sticks our heads out of them and screams like crazy until we reach daylight on the other end! All the way through the tunnel our voices echo and bounce around in an unmelodious manner. Bruskly, the screeching comes to a sudden halt as we exit the tunnel leaving only our echoes to greet other travelers. We always manage to break into quiet happy giggles afterward; I couldn’t tell you why exactly, just that we do.

I suspect that what makes this tradition so fun is that it is so uncharacteristic of our otherwise ‘proper’ lives. In the darkness of the tunnel, with no one looking, we can 'let it all hang out' in a harmless way. All it ever takes is for one voice to sound the alarm, “tunnel!” and all windows are instantly put down with every head positioned silently beside the open windows anticipating the darkness of the tunnel. Then, suddenly, without hardly another breath, comes the vision of the tunnel entry! In unison we blast, “Ahhhhhhhhh!” all the way through to the other side. As the first ray of light strikes the car’s front bumper, voices halt and windows silently return to their traveling position.

We have literally screamed our way from Florida to New York, New York to Oklahoma, Ohio to Oklahoma, Oklahoma to Arizona, Texas to Alabama and every state and tunnel along the way. Probably we have left behind in each tunnel just a small load of worries, cares and frustrations.

I love to travel. Something inside me gets itching to go- to see- to experience. I always come back home refreshed and re-energized with new creative energy. But these days any type of “get away” is not so easy to come by. I often feel as though our lives are so inundated by Alzheimer’s disease that the rest of the world almost eludes us right now. It is as though the tunnel never ends, the light never reappears, and the windows never get put back to the travel position. No giggles at the end of the tunnel- not yet. Just darkness echoing our screams!

Like tonight, Susan believed her purse was stolen and she wanted to call the police. She wouldn’t let dinner proceed peacefully until she got her way. She threw curses around as if she were a drunken sailor and this were a saloon she had just happened into at port. Jeff had worked all day and was tired and I was excited that he was home. All we wanted was to enjoy a peaceful dinner together and all Susan wanted was to get us all stirred up about this imaginary robbery!

We have learned that we must choose not to let it ALL be about Susan. Frustrated with Susan’s inability to be civil, I asked Jeff not to engage her at all. I turned to Susan and firmly looked into her face while informing her that this was my house and that she would not speak that way to my husband or any of the rest of us! Next, I informed her that there would be NO cursing at this dinner table!

Although she looked at me as though she understood, she continued as though she dared anyone to stop her. She griped about the money and the black purse (which she doesn’t have) and the thieving neighbors until finally Jeff escorted her (kicking and screaming) back to her room. He locked her door and we finished our dinner in peace. We don’t see any other options when her behavior becomes so unpleasant and unruly.

We think we have learned what works and what doesn’t as time has gone on. The tricky thing is, about the time we have it figured out, something changes or worsens or we are faced with a new dilemma that requires a totally new solution. “Ahhhhhhhhhh!!”

Friday, January 22, 2010

My Prayer


Lord, cause me to walk uprightly as I travel this path. I want to have a sweet spirit and a good attitude of joy love and patience, but I am afraid that very often I fail. Perhaps most of the time. I want to learn to wait on you, Lord: Your perfect timing, Your guidance, Your plan and Your perfect will for this families life. I am afraid that my own nature is to run ahead and make my plans, attempting to make life happen my way. Yet,I am absolutely sure that your ways are unimaginably higher and better then any of my own thoughts or dreams; I want Your ways for myself, for us- Your will. I do.

Create in me a clean heart, O God,
And renew a steadfast spirit within me.
Do not cast me away from your presence,
And do not take Your Holy Spirit from me
. (Psalms 51:10-11)

Renew my strength. Walk beside me, carry me, and remind me that it is ok if I cannot be everything I try to be to everyone I want to be there for. You are all that is good and wise in me. That I know for sure.

Tuesday, January 19, 2010

Welcome to our 2010!


Susan seems lost today. She is cold and wants coffee. Other then that, she just keeps going to bed and getting up to stare at me (as if I am supposed to stand up and start entertaining her.) Finally she asks, “Where is Inang?” (Inang means mother in tagalog- Susan’s native language from the Philippines’.) Inang is what we always called Susan’s mother, Jeff’s grandmother.

I have a choice now. I could attempt a change of subject, a redirecting of thoughts; but from my experience she always comes back to it. Or, I could just remind her of the truth and hope that she will believe me for once.

At the risk of an episode of anger or an event of great mourning, I opt for the truth. I look her in the face and firmly state, “Inang died twelve years ago!” Jump back! She looks shocked as her head jerks back and she gawks unbelieving at me. I change the subject. “Susan, the news is on. Go sit in your rocking chair and see what they say.” I suggest. “No, I’ll just go to bed.” She says numbly as she scoots toward the back of the house.

In a few minutes she glides back into the living room without any talk of Inang. She sits at the kitchen table and asks for hot coffee. I oblige.
While heating her coffee I ask, “Do you know what day it is, Susan?”
“Monday” she answers without hesitation. (It’s Wednesday)
“What month is it?” I continue.
“May,” she responds on this cold January morning. (Thought: May is her birthday month)
“What year is it?” I ask next.
“1999,” she reminds me. (Last week she told me it was 1974, so she has aged considerably this week.)

Nothing but silence fills the room for about thirty seconds.

“Is that right?” she wants to know.
“No, it is actually 2010, Susan.” I respond, almost reluctantly.
Her answer surprises me. “What? 2010? Well, that is the end of the world!”
“What?” I hoped I had heard her wrong!
“That is the end of the world!” she proclaims as if she is sure.
“Why would you say that? What do you mean?” I grill.
“It just is!” She repeats as if she knows a big secret.
“Why? Are you going to die?” I have to ask.
“I don’t know, Karen. I just heard that 2010 is the end of the world. That is what she said.” She goes on as if she is telling me a story.
“Who said that?” I ask, disbelieving.
“The lady. You know, the lady on the radio!”

So no, I don't know the lady on the radio. I don't think Susan knows the lady on the radio. Probably she just can't remember where that thought actually came from. Somewhere in her brain, floating about, popping in and out, like a lady on a radio, if I may.

Well, welcome to our 2010!

Thursday, January 14, 2010

Caregivers Everywhere












This whole catastrophe in Haiti is such a sad thing to observe. Something inside of me (and probably most of you) wants to get there quickly and help out! I picture myself making my way through the rubble looking for that crying helpless person who is alone and needs me. I could bring them water, bandage their wounds, rock their babies, pray with them, build them a safe shelter, make them a comfortable bed and so on. Then I think to myself, “Isn’t that what I am doing right here?" Who needs to go to Haiti when I’ve got this needy person right here in my own home?

Like on Nine Eleven, I think this Haiti earthquake tragedy will bring out the best in people. I hope so anyway. I love seeing human beings really caring for others. It is obvious during a world crisis how much caregivers, rescuers, and workers are needed. But I say that every day all around us care giving happens. I have learned that these past five years as I have been thrown into places and situations where I have witnessed endless heroic acts that never made the headlines! Heroes caring for loved ones, not giving up on someone that the medical community or the insurance companies want to give up on. If I were to tell their stories I would have to begin by telling mine. Maybe I will attempt to do so in a forthcoming blog. But right now I just want to highlight one couple that has become heroes of Jeff’s and mine.

Ted has been Jeff’s best friend for about twenty-eight years now. Megan is his young beautiful wife. They live in Michigan and have basically devoted their days and put their own dreams on hold in their effort to care for his parents. The circumstances are complicated and the story is long and incredible, certainly too long to tell here; however, the more of the story one knows the more this act of caregiving is admirable.

Ted and his two brothers were adopted as young boys after extreme neglect and abuse and being tossed about in the foster care system. Three boys is a lot to take on no matter how you look at it, but the new parents now had three strong backs to work hard on the land. The truth is, this band of brothers were just glad to be together since hardship was something they were already too familiar with. After all, they did go to school and they had clothes and food; this was more then they had ever had before.

A friendship between Jeff and Ted began during their military years. Perhaps it was Ted’s need for a role model to look up to or Jeff's need for a true and honest friend to laugh with that brought about the bond. Whatever it was, I respected it and was always thankful they had one another. Most of this friendship has taken place long distance as we both traveled with the Air Force and eventually Ted returned to beautiful Michigan to settle.

Across the miles Jeff cheered Ted on through a marriage, the birth of his three children, and a successful career. And when his marriage failed and a painful custody battle ensued, Jeff encouraged him to fight on. So years later when we traveled to Michigan to witness his marriage to beautiful Megan, we couldn’t have been happier. He deserved something really good for a change and we all rejoiced at this breath of fresh air permeating their lives. So the recent announcement of a pregnancy gave us all the more to rejoice about!

Ted is one of those guys that you hope and pray the best for but wonder why, from birth, life keeps kicking in his bubble. It seems, he and his good-hearted wife are really devoting themselves to doing what is right. Three meals a day they make and serve to his aging parents, they rescue his dad in emergencies and keep him safe as his mind fails. They clean feces up for his mother who fails physically and refuses to properly care for her self. Although Ted has a business to run, this caring for these two very different ailments of his parents also requires a full time commitment. Ted and Megan have sat alone at the hospital bedside of their father since Ted’s mother doesn’t leave the home- apparently even when her husband might be dying.

Where are the brothers, you might wonder? It seems there are always some children who feel the obligation to ‘care’, while the others seem to be free to let their aging parents go it alone or give them up to strangers who will do the job. That appears to be the case here. There are no helpers for Ted and Megan, no compensation and no relief workers. Just two lovely people caring for those they love. I can picture Megan’s big eyes that reveal a picture of her beautiful heart. She simply melts my heart because she is so pure and loving- so lovely.

Very recently, in fact it was the week of Christmas, Ted’s mother needed surgery in order for her to live! The doctors prepared Ted and Megan not to expect her to make it through. Each day they cared for Ted’s father and sat by his mother’s bedside while the holidays came and went with no Christmas celebrations, no special gifts and no financial compensation for the time off work that his mother had requested of Ted.

This situation may not seem like such a hardship compared to others I have witnessed and certainly Ted himself would attest that he has personally experienced worse in his own young childhood. Remember, he had learned to be strong, to buck up and to turn off. But what I have not yet told you is that Christmas week was the very same week that Megan was miscarrying their child that they had rejoiced about just a few weeks earlier. Day after day, Megan served, tended and visited others while her very self was in crisis. In the hospital bathrooms she would cramp and bleed while her Ted waited. Heroes! You too might have seen some. There they are; lingering in most hospital corridors day after day, beside oxygen masks and IV hookups, waiting- praying and giving their selves to others without ‘Thank- you’s,” without rewards, without help of any kind.

They are caregivers. They are heroes. Do you know any like them?



(The pictures on this blog were all taken by Jeff or myself. We were given the gift of being the photographers at Ted and Megan's wedding. That is, all but the first photo that we are in!)

Wednesday, January 6, 2010

The Murmurs of A Caregiver

(My Sweetie Pie, Jeff
and myself, Karen)










What does it take to be a caregiver?
Two thoughts:
-Being in a bad place during bad circumstances.. Someone’s pain and suffering causes us to take on a role we never planned for and very likely never even considered.
-Being in the right place when the time was right
. Reality is that life happens. It rarely goes as we dreamed or perfectly planned. It is real. Accidents happen, surgeries go bad, disease sets in, cancer takes over, and perfectly imperfect children are born. Care giving happens. Caregivers are the lucky ones, if I may.

Don’t get me wrong. It is not as though I am some sort of saintly caregiver prancing around with an endless smile on my face. Sorry. More likely, I am donned in those infamous yellow rubber gloves up to my elbows, wearing my hear clipped safely on top of my head, with an apron covering my clothes (as if it was a coat of armor protecting me from the days battle, which in this case is the dreaded bathroom job!) I am likely crouched beside my least favorite object in the world- a dirty toilet! In one hand I grip a much-used scrub brush and in the other a can of Lysol spray. Between gasps for fresh air intermixed with spontaneous gagging reflex noises, I am usually mumbling something about how I got elected for this job anyway, where all the others (who love Susan) are right now and something about what I too would rather be doing! About this time, my swirling thoughts are generally calculating the cost of a cleaning person to do this job for me- no, for her- no, for everyone else! Woe is me.

The truth is that care giving is a thankless forgotten job. Your kindest deeds and most heroic acts are done quietly beside dark bedsides and behind closed doors. Those who have not chosen this role are going about their lives, building their careers, enjoying unrestrained travel, undestroyed possessions and the freedom to entertain or whatever else they desire. There are days when fighting resentment is half the job. Caregivers have families and lives too, but must be prepared to put theirs on hold. I am not denying that this selfless act has its own rewards and blessings; they are just often difficult to find and often blurred out of focus. I am eternally reminded by well-meaners that the rewards in heaven are waiting; I also am very aware that I deserve nothing (from a spiritual perspective). But this blog is The Murmurs of a Caregiver- they are real- be prepared.


Sometimes my pain is for her. I sadly watch her struggle to remember and fight angrily to regain her independence. My family becomes the object of her anger, as is true with most caregivers; they are there, and so become the ones lashed out against. In her more lucid moments, I do hear her cursing those who never visit her or call. Occasionally she remembers that and it saddens her. Mostly though, the others are off the hook; she forgets. That is easy to do since the calls become more and more infrequent. There is nothing to remind her that they should care, that they are out there, somewhere. The nurses become her visitors and my children become her ‘neighbors’ and 'friends'.

(Photo: Kiara and Victoria)

At times, often when I am least expecting it, Susan expresses her gratitude to Jeff and I. She says, “Thank you. I appreciate it.” Or “I am glad I live with you and Jeff, Karen!” “I like it here!” She has a comfort zone here- a safe place- a happy home. She is well fed and things are tidy and calm. She is stimulated and encouraged to do more or to walk further or to find 'it' on her own. On the other hand, she is free to be sick, to deteriorate safely, she is not over-drugged to sedate her for our convenience. She is loved and she knows it. That’s what care giving is around here; that’s as it should be, I suppose.


(Top: Susan)

(Bottom: Kyle and Ashli)

Tuesday, January 5, 2010

A New Year

(Susan snuck out onto the ice covered porch)

We are in the first week of the New Year now and I am already realizing that it will be a year of changes. They are inevitable. Inside, I long for certain changes and hope that this family has the joy of seeing them come to fruition this year. Then there are those changes we aren’t particularly yearning for with hints of them already welcoming us into the New Year. Without meaning to, Susan keeps dropping big clues as to what is around this new year’s corner. I have to believe that God will give us the grace when we need it; otherwise I would head into this year of change with fear and dread.

As Susan’s disease runs havoc on her brain, her condition worsens before our eyes. It does not get easier. She requires more and more safeguarding and care giving these days. She no longer wears underwear since she has become more incontinent. That is not so bad, but she cannot generally understand that her pull-up needs to be removed when it is soiled. She cannot find simple things in front of her anymore and she does not seem to be able to perform a simple search for her lost object. Generally the item is in plain view to the rest of us. So she is always on the search for one object or another. Yesterday it was her keys and house slippers. My heart melts when she comes out of her room so childlike to announce that something is missing and (at my urging) returns repeatedly there to find an object. Eventually I inevitably accompany her on the ‘big search’ and simply point to the object in plain view and say, “right there, Susan.”

She is more hunched over, shuffles her feet again, thinks days are nights
and nights are days. The scariest change is that her confusion has become a danger to herself. Recently she came to the breakfast table with swollen eyes and red sore cheeks. She said she had been bitten by something in her bed. Finally I put two and two together and remembered the small zip-loc bag that contained those squares of automatic dishwashing soap that had been found beside the bathroom sink earlier. Somehow she had gotten under my kitchen sink, found the soaplets, and placed them in a zip-loc bag before taking them to her sink where she obviously used them as some sort of face scrub. Ouch! Her swollen face and cheeks served as warning signals to the rest of us: Don’t let her out of your sight! Not in the kitchen, for even a bite!

She has to be watched like a young child or she will: go outside in the freezing weather, slip on the ice, eat dog food, snack on rocks, wander off thinking she is headed someplace important, confront strangers, urinate in cosmetic bags, steal things that don’t belong to her, set the kitchen on fire, cram canned food from the pantry under her mattress, throw away important belongings, loose things, find things, and all sorts of other mischief! Just last night Jeff caught her in the bathroom contemplating drinking from a bottle of face scrub. We are on guard on her behalf more then ever. I wonder what changes tomorrow might bring. I hope and pray that I will be gracious and that Susan will be happy. Right now, she is.