Roller Coaster Experience

“The things that matter most in our lives
are not fantastic or grand.
They are the moments when we touch one another,
when we are there in the most attentive or caring way.”
-Jack Kornfield

Life with Susan has changed in many ways; still, others are very much the same.That familiar "roller coaster ride effect" continues. The dawn of each day dips us low or raises our hopes high only to be brought down again by the inevitability of things like gravity and death. Today we are riding in the low zone; the place where we coast low and seemingly safe before the next turn. Susan is not good, but steady. We are hanging on, not sure if or when this ride might stop. Even more confusing is that feeling of not knowing for sure if we want it to.

We, meaning (this week): Katrina and Kyle, Kiara and Matt, Jeff and (of course) myself. This roller coaster is not so nauseating when there are buddies sharing the seat, experiencing life’s ride with us. No one should do this alone; not even Susan. We are here with her- they are here with us, at least for today. We will not worry about tomorrow; it will take care of itself.

Together we watch Susan grow weaker and frailer. She is less interested in food, drink, conversation or even who is in the room with her. She responds to pain and irritation more than anything. She sleeps more and seems almost to be fading away before our eyes. It is a very hard thing to watch. We pray for comfort and peace for Susan. For her, we can’t help but want it to end. None of us wants to watch her suffer any more.

We struggle to keep her body from bed sores by turning her bony little self every so often. We prop pillows in every possible angle to keep her knees and ankles from touching or to keep her legs elevated so that her heels don’t rub the bed. This brings back sad memories of my mother’s last four years after her brain surgery. In a way, I am thankful for that experience that helps me care for Susan; on the other hand, Susan being here has kept me from fully grieving my mother’s passing (less then two years ago). Now, as I look at Susan, I see my sweet mother as well. I don’t like to remember my mother’s pain and I certainly don’t like to watch Susan’s.

When I walked into Susan’s room yesterday her eyes were red and wet as she lie on her side starring into space. “What is wrong, Susan?” I sensed that she was having a moment of deep thought that I was not privy to. “Susan, don’t worry. You know that Jeff and I will take care of you as long as you are alive, right? And, everyone loves you.” She turned her eyes to me and more tears came, but no verbal response. “Susan, heaven is a good place to go. Don’t be scared. When you are ready to go be with Jesus, it is okay. But if you want to stay here with us a while, that is okay too.”

There we were, face to face, eyeballs connecting. I thought about this bond we have developed these past two years, two women experiencing some of this crazy life together. I smiled. She starred deep into my eyes as if she wanted to say more. I held her hand and reminded her of my love- Jeff’s love- all of her children’s and grandchildren’s love- Jesus’ love…

I can’t help but wonder if this roller coaster experience that I never wanted to have is coming to an end. And oddly enough, I feel sad if it is. Sad, because nothing on earth is better than truly giving of one’s self in a way that doesn’t give back. It is then, and only then, that we discover that we are the recipients of far greater gifts than this earth could ever give. If I had not been Susan’s caregiver, I would have missed out on all that I have learned and shared, things that can never be gotten in any other way. For that, I thank Susan.

(FYI: The pics on this entry were taken sometime this year on some of her "better days.")

Hospice

(Pictures of Susan will be protected during her most recent decline, to respect her privacy.)



Hospice was called in on Monday.
Here is what happened:

After returning home from the hospital on Tuesday, August ninth, Susan continued on a visible decline. Day after day she was weak and her appetite was slim to none, although she still suffered with extreme diarrhea. On Monday morning, I (again) found her lying in the bed with messy pants and sheets. I managed to assist her to the toilet and shower, where we cleaned her up.

Back in the bedroom she could hardly hold herself up long enough for me to change the linen. We redressed her and put her back to bed. She was weaker than usual and just wanted to rest. Other than her daily round of medication, I couldn’t get her to eat or drink anything.

The concern that Jeff and I had felt over the weekend prior, had seemed to resolve itself somewhat on Sunday. Maybe she wasn’t dying (as we had whispered among ourselves.) In fact, she was so perky on Sunday that I had encouraged Jeff to continue with his plans to go out of town on business for the week. I don’t mind being alone; I was a military wife for twenty years.

I was looking forward to seeing my friend, Martha, that Monday morning and spending some time with Kiara later in the day -not to mention, and getting a few overdue projects worked on. Who could have known? Martha was still there when our favorite nurse, Lawanda, came to check on Susan. Upon entering her bedroom, we discovered that Susan had slipped into a deep sleep that we could not wake her out of. Her blood pressure was more than dangerously low and other vital signs were somewhat disconcerting. Susan would not respond to anything, not even the needle prick from her B-12 shot! Nothing- just listless Susan sinking deeper into her peaceful sleep.

To sum up the week, my week alone turned into a shared experience with three of Susan's children who traveled from every coast to be with their mother. An entourage of nurses, aids, medical suppliers, delivery people, chaplains and even a priest, have become the norm. Susan likely has suffered several small strokes again, topped by the dreaded hospital transferred C-Diff. By weeks end, she is still breathing and perhaps even thriving! She is not walking or able to really converse, but with a woman as strong and determined as my mother-in-law, tomorrow is anyones guess! As I end this blog entry, the words to a Bill Gaither hymn are running through my mind. If you know it, sing it with me.

“God sent His son, they called Him Jesus
He came to love, heal, and forgive.
He lived and died to buy my pardon,
An empty grave is there to prove my Savior lives.

Because He lives, I can face tomorrow.
Because He lives, All fear is gone.
Because I know He holds the future,
And life is worth the living just because He lives."

A Willow In the World

Warning: This entry is not for the faint of heart! What you are about to read might not groove well with the rest of your day. But I feel the need to write about it because it is the truth! And besides, it is all about my day and Susan’s reality.

I have never been a quitter and I don’t plan to become one. But if I am going to be honest, I have to say that the thought of giving up this whole care giving thing has crossed my mind- more then once these past few days. I mean, the thought that this entire episode could in fact be a new stage in Susan’s Alzheimer’s disease, really scares me. The thought that she may never regain her continence or her strength or any lost piece of where she is or who I am- it just doesn’t jive in my gut. Not yet. I hope it never does.

Care giving of this caliber is not for the faint of heart! Fighting this or any disease is not for those who are weak. But sometimes, in circumstances such as these, we find our strength- if we choose to. And if you have chosen to fight for yourself or your loved one, in the midst of all the pain and suffering and grime and loneliness, I think you will find joy, compassion, love and an inner peace like you have never experienced before. So, if you don’t think you have it in you- maybe you don’t; but if you think you might, I bet you do! God gives us the grace when we need it, not before.

Today is Friday. Susan came home from the hospital on Monday. Here is how my week has gone: each morning I find Susan in some precarious position: in her bed, on the floor, or tangled half in and half out. Her pull-up is always full of diarrhea, which can be smelled before I hit the door to the hall. Each day it has leaked onto the sheets and bedding, plopped on the floor, and smeared up her back and onto her clothing. I put on my disposable gloves and retrieve Susan slowly from her awkward position. With my assistance, she scoots (extremely hunched) to the toilet, where I lower her pull-up and set her on the toilet. I place it into a fresh garbage bag, along with Lysol wipes that I use to clean plops from the floor. The soiled bed sheets and dirty clothing are gathered into the laundry basket as Susan sits releasing more of her antibiotic reaction (I suppose).

Meanwhile, as I am warming the
bath water, we argue about Susan’s need for a shower, until eventually she is forced to step inside. Gloves still on, I squirt a body wash over her body and I cleanse her backside as she scrubs the front. Sometimes I even clean feces from her hair. Finally, I wrap her in a towel and hold both her hands as she steps out onto the floor. She leans on me as we walk the four feet from bath to bedroom. There, I set her down on her towel and she continues an attempt to dry herself up while I gather fresh clothes. My gloves are deposited into the new bag of trash; I tie it up and place it at the door.

While assisting Susan with a change of clothes, we run through some simple stretches and arm and leg lifts just to keep her from tightening up. She loves it when I let her kick my legs for exercise. I try to crack a joke or two in an attempt to make her laugh. If she is not in the mood, we work on just the face- a smile. I try to coax one out of her by reminding her that, A merry heart does good, like medicine.-Proverbs 17:22. Finally she forces her lips into a flat position, which equals a smile for her these days. She doesn’t seem to feel well enough to talk much; however, one day this week she surprised me with: “Karen, I feel like a willow in the world!” Once I verified that had actually said what I thought I had heard, I asked her what she meant by that. “Well, when I wake up in the morning I just feel like I’m going here and over there- like I’m just dizzy. You know.”

As I am returning her safely onto her freshly changed bedding or propping her up in nearby chair, I can’t help but remember the sharp, quick, stylish beauty that she was not so long ago. I think of Jeff’s father and how much he loved her. I think of how he would feel if he could see her now. Change has come into all of our lives rather unexpectedly these past few years and Susan is really feeling it this week. I admit that there is a bit of fear for our future, topped delicately with a dab of faith and hope- for whatever it holds.

Once I leave her room, I wash up thoroughly and head to the kitchen to find her something nourishing. Usually she will eat a few bites of applesauce or half of a banana. It is placed on a red tray (her favorite color) with her morning medicines and one or two drink options, accompanied with a straw and napkin. Back in her room, I feed her as much as she will tolerate, and leave the tray beside her on the bed in case she gets the inkling for some more. She never does.

By then, Susan is generally half asleep. I open the shade to let in some sunshine and spray her room with Lysol and sometimes burn a candle. That is when I head for the laundry room with a new set of gloves and begin washing the soiled sheets and towels. Periodically throughout the day, I re-enter Susan’s room to check on her. If she is clean, I simply check her and reposition her body from side to side with pillows (to prevent bedsores). Sadly, bedsores are now a concern with Susan. She developed a tender spot on her back side while lying flat for a week in the hospital (under the care of her first doctor who didn’t believe she could walk!) If, when I check her, she is soiled, then the entire routine begins again!

Good morning world! We are alive in Oklahoma! How about the rest of you?


(PS. Thank God for Jeff!
He was up with Susan the last few mornings at four AM feeding her and showering her. He is such a good husband and son. And thank God for weekends! Jeff and I split the chores, I showered Susan while he gathered and washed her laundry and so on.)

Hospitals

I last blogged on the plane as we were flying back to Oklahoma, where we faced an ongoing battle with Susan’s health and medical care. The details are mostly unimportant now, looking back. What is to be learned and gained from it all is that each of us must be proactive in our own health and health care and we (caregivers and parents) must be proactive on behalf of those we love and those who cannot fight for themselves.

What put Susan in the hospital is questionable, in my estimation. They attributed her original weakness and fever to a UTI (urinary tract infection). The truth is that she had already been on antibiotics for it for several days prior. Then, her new intravenous antibiotic caused a severe allergic reaction that overtook everything else. Kiara, Ted and Megan did a great job of following Susan’s care and corresponding with the doctors in our absence. They sat by her bedside, fed her, and kept everyone informed and updated.

After I arrived, a discussion with her hospital doctor clued me in that he was not a good listener. He arrogantly had preconceived ideas about Susan’s condition. He told me that she had another neurological disorder that would cause her to never walk again, but couldn’t be more specific when I pressed him. He would not consider physical therapy even though I assured him that she had been independent only a week earlier. He insisted on releasing her and (after learning she would not be put in a home) recommended a temporary facility where she could regain her strength before returning home.

Although I was opposed (at that point) to any talk of putting her in a permanent nursing facility, a temporary facility that would enable her to build enough strength to return safely home, was considerable; but not without my approval. So, Megan and I left the hospital and (without warning) drove to check out this place the doctor had chosen. I was appalled at the conditions and knew that NO MATTER WHAT-Susan would never be a patient there. I would rehab her myself, if necessary!

I made some calls to friends who had required similar rehab in the past. We made another unexpected visit to a facility they highly recommended. There, we found professionalism, cleanliness, courtesy, a homey atmosphere and a great rehab department. The following morning I made a call to my hospital contact person and put in our request. By the afternoon Susan had been accepted into the new facility and was on her way.

Jeff and I set up her room, tucked her weak self into her new bed and explained things to Susan in a way she might understand. We told her that this was a special place she was chosen to go to- just until she could walk again. We assured her that she would come back to our house when she was ready. She asked many questions and we answered. She was happy; so were we. I will admit that I worried all night about getting a call to pick up Susan because they don’t accept wanderers or combative patients. I was pretty sure she was still too weak to fall into those categories.

The next morning Megan and I headed for the rehab facility across town. I didn’t know what to expect since everything was new to us and to Susan. I hoped for the best. Of all the concerns I had had, I would have never guessed at what we did find! Susan was not in her room; she was in her chair at the end of the hall. A therapist walked us down toward her as she explained that Susan seemed to have a fever today and they had already put a call in to her doctor.

My first glimpse of Susan sounded the alarms! I leaned in toward her and touched her face, “Susan, Are you alright?” My reaction must have alerted the physical therapist that something was off, since she began explaining, “We weren’t sure what was normal for Susan since we don’t know her.” Susan’s entire body was rattling and her mouth was open with her upper teeth dropping up and down over and over as she shook. Her skin was an odd blotchy red and spreading. “Something is wrong with her. This is not normal for her!” I warned. More calls were made. Jeff arrived to a scurry of people making calls and checking on Susan, followed by an entourage of emergency responders in our faces asking questions as Susan grew worse and worse. By the time she was taken back to the hospital by ambulance, she was delirious and could not hold her head up.

They again tested her for a UTI- negative. Pneumonia was the diagnosis this time. She spent five more days in the hospital. She has now been home for two days. We chose hospital to home (rather then a rehab facility), since we had gotten her up ourselves and walked her down the hospital corridors. (We refused to believe she would never walk again!) Too bad we didn’t run into the first doctor, who could use a good lesson in listening skills.

Up and Away

So, this time I really am in the air and my getaway is for real! Well, almost…
In fact, this blog is being written from my small seat on an airplane flying somewhere over Utah- Kansas- Colorado and Oklahoma. It is true, Jeff and I went away; the discrepancy lies in the actual act of “getting away.” Although it was Jeff’s business trip to Utah that initiated the get away, I took advantage of the opportunity to tag along. It was too tempting to resist, since our daughter, Katrina, and her husband Kyle, are stationed in Utah, with the Air Force.

Our time with our children has been sweet and joyous while the scenery was awesomely inspiring. But “getting away from it all” seems to be non-existent in our lives right now. Honestly, I could write several chapters in my adventure novel- all about what we had to deal with on our “get away” this week. It became all too clear to everyone around us that really getting away is no longer possible for us, not at this time in our lives, anyway. We really had tried. I figured, if we prepared well enough, it would be easier to comfortably leave it all behind. Our caretakers at home vowed not to call us unless it was absolutely vital. They knew how much we needed the time out. In fact, only a few chosen people even knew we were leaving.

With Susan in our home, lots of preparation goes into getting away. Anyone with children or a loved one requiring ‘special care’ can fully relate to what I am saying here. It may seem to be all somewhat routine; however, with Susan it is vital to go over every possible scenario, because the truth is, every scenario is not only possible, but likely. “What if she has a seizure…a mini-stroke…wanders off…has high blood pressure…” We review symptoms and responses, nurse’s schedules and medicines. We leave lists, important numbers and medical files. And of course, we never leave town without a legal temporary Medical Power of Attorney, signed and notarized.

I will say though, that with all of that finally taken care of, when we drive out of the driveway, we are generally truly able to leave it all behind and just enjoy where we go and what we do (away from Susan). Or should I say, we used to. On this trip to be sure, Susan has caused us worries, time and many phone calls; but remember, she is not our only concern in life. Imagine that! She was not our only disruption from the beauty of Utah, the sweetness of our daughter and the awesomeness of the mountains and waters that we so enjoyed.

We are traveling home to a house without Susan- only caregivers rushing back and forth to the hospital where Susan is now a patient. The “what if’s”… happened. Perhaps it was another seizure or stroke, an infection or possibly even pneumonia. From what I hear though, Susan is keeping the hospital staff on red alert (as usual)! I admit it, I am laughing. That means she is well enough to be Susan. She is ripping at her IV’s , trying to disconnect her catheter and attempting to discharge herself from the hospital, where she is sure she does NOT need to be!

It looks like we will be flying
into Oklahoma City and heading directly to the hospital. I am sure that Kiara, Ted and Megan will be glad to see us coming. I bet they need a break. And I thank them all for working to give us one.

(The photos on this entry were all taken on out trip to Utah, including the one of my daughter, Katrina.)