Welcome to the back of the bus, Grandma

The longer I live, the more I learn ... sometimes, that's just plain unfortunate. Sometimes, really, ignorance is bliss. 

Since my sister and I began the journey of finding the best place for my parents to live, especially for my mother in her current condition, the repugnant realities of growing older in our society have screamed megaphonically in my face. 

I am definitely not a fan of what aging does to the body: wrinkles, sags, gray, aches, pains, illnesses. I don't think many of us care for those lovelies. 

Interestingly, I saw an interview not long ago with two aging female celebrities, both attractive and youthful in appearance, but each noted how devastated they have felt to become among the "ignored" and "insignificant," in our society. I felt for them, especially in their line of work.

But as I have plodded deeper into the dark forest of my parents' illnesses, I've come to see that these ladies and their families – and others like them (i.e., relatively wealthy) – mostly have it made. At the very least, money provides the opportunity for one to get old and receive the necessary care in one's own home, once the body and/or mind have become infirm. 

For the the average American, however ... Lord, help us all. 

Let me illustrate.

Gotta get my zen on

I had been doing so much better at managing my anxiety about my parents' health and the care my mother is receiving in a long-term facility.

"Had been."

That means I've completely lost my zen, and the angry, petulant Voice #4 has sought to permanently overthrow and rule the peaceful, wise and patient Voice #1.

The thing is, my mom has lots of anxiety. She always has, even before the stroke. So, every time we've had to make a major move with her since she had her stroke, we have faced a period of a few days to a week of adjustment for her. Those adjustment periods truly are hellish. She's angry, paranoid, sleepless, restless and needy. And she's just awful to my dad. (I don't blame her; she cannot help it. Just describing what is.)

But, we adjust, and now we have adjusted to her new room in the long-term care hall.

Oh, wait! Not really!

I have discovered she adjusts a week at a time. "Adjust" means she is less fidgety and restless. She responds kindly and with acceptance to those of us giving her care. She manages at times to carry on relatively sensical conversations. She, overall, goes with the flow.

I happily get used to this. This is as things "should" be. (Do you hear the expectation in that?)

Then, weekends roll around. Most people adore their weekends. They work all week just to have a weekend. Weekends make life AWESOME.

I used to love weekends, too.

Now, weekends are chaotic and painful. So much so that I cannot control Voice #4 sometimes. She screams so loudly that I periodically act on her insanity.

You see, at my mom's new "home," weekend staff change frequently. We never know who is whom. New ones come and go, and they do so without any knowledge of my mother's needs. (And I am certain the other patients experience the same thing.) While I have informational signs posted in her room to alert the ever-changing staff of various things, failure to heed the safety and comfort requests demonstrates to me that the signs are either ignored and/or not read.

More importantly, communication among staff just plain sucks. Period. And if they're not going to discuss patients from shift to shift, is it really that difficult to read patient progress notes?

Finally, a shortage of people to take care of patients seems to exist on weekends. Either that, or they don't give a flip about responding to needs in a timely manner. Is that because no big wigs are around to monitor?

Voice 4 begins to whimper after a time. Once I've tried to calmly handle matters and have been ignored, #4 begins to wail. She despises feelings of powerlessness. (Maybe I should name her. Would that be too over-the-top?)

I can only stand so much wailing. My nerves are shot. Zen disappears. And I unleash #4.

She stomps. She pouts. She cusses. She scowls. She even sometimes dares to speak harshly to staff.

Crap. That means I have to apologize, and I hate saying I'm sorry.

Thank the Lord it's Monday. Order most likely will resume. Mom will chill a little, and I have exactly five days to comfort #4 and to remind her to use her positive coping skills and to practice patience.

I suppose #1 and I will have a talk with an administrator or two — not only for my mom and the other patients — but because #4 embarrasses the heck out of me and gives me headaches. Convulsive fits exhaust me.

And I hate cleaning up her messes.

What will He do next?

I don't know about you, but I have this really bad but maybe-it's-only-human habit of trying to figure out what God is doing.

Especially when things don't make sense to me.

Especially when I don't like what's happening.

Especially when I see "God things" happening around me.

Especially when what I had come to believe becomes a question mark in my mind.

When I wrote A Verdict is In, I purposely said "A" not "The." And I asked you to interpret for yourself all of the information my family and I had been given about my mother's condition. (Not to mention my dad. His progress remains to be seen, for sure.)

I'm a big believer in science, because science offers proof. Research provides results in which we can make educated decisions. Science is a good thing. In fact, God created science; God created scientists. God and science are not in conflict with one another — not in my opinion. Heck, God uses science, i.e., medicine and doctors, to perform HIS miracles. God and science work together.

I believe everything the doctors are saying about my mother's condition and prognosis. They are giving me information based on research and vast experience. I respect that completely.

But I also believe God has written and is directing this film, so I don't know all the twists and turns along the way, nor do I know or can I even predict, how this story will end.  God knows I'm trying, much like I do when I'm watching movies, but this endeavor is in vain. I might as well give it up.

Still, I can't help myself. I continue to watch intently and to participate as one of this film's actors.

Here's why:

I saw and heard the science of my mother's condition. I shared it with you. I have even watched her seem to digress in certain areas. In fact, we have made future living arrangement decisions based on science.

Then ... then Mom gets adjusted to long-term care. She seems to be settling into her environment. She even likes the three women we've hired to care for her. It's been a WHOLE WEEK since she's been angry or delusional about our intentions with her.  She's become slightly easier. We've fallen into a routine that seems to work for her. She appears to be trusting that we aren't leaving her and that we will be there for her, every day.

(Okay, okay ... We'll see what happens next week. <sigh>)

When insurance booted Mom out the rehabilitative therapy door because she wasn't making enough progress quickly enough (In other words, they make up rules that give them excuses to not have to pay for care.), Dad refused to give up; he hired Tawny and is paying her without the aid of insurance.

Kim and I went along with hiring Tawny because my dad has desperately needed to hold onto hope. He had been drowning in sorrow and depression. His pain was killing my sister and me just as much as my mother's prognosis. I'm telling you, my dad has not heard (or accepted, maybe) one word of what the doctors have told us. Not one.

So, Tawny has been with us for two weeks now. She comes four times a week for one hour at a time and works with Mom in her room. She's not allowed for liability reasons to use the facility's therapy gym.

Tawny is a FIRECRACKER. Love that lady! So does my mom.

The Circle of Life

I have been blessed to have conversations with people I've either never known, or have not seen in ages, since I started writing this blog, and people have become aware of both parents' illnesses.

Cristin Betzen, one of my dad's former players at Randall High School, is one of those people. With her permission, I have shared something she said to me in a Facebook message not long ago.  Her dad died 12 years ago of cancer, so she has been filled with compassion for what Kim and I are experiencing.

"It is. It's awful. The hardest thing I've ever done. Yet I had the distinct honor and privilege, that so many are denied, to give back to my parents a very small piece of all they had given to me in my life. So often he said, I'm sorry you have to do this, and I said, I'm not. I'm so lucky to have cared for him just a small fraction of what he did for me. Out of terrible things, come beautiful, perfect things that you will cherish forever." -- Cristin Betzen

I appreciate Cristin's words so much more than she could have known when she wrote them. She expressed a feeling and words I had never imagined before all this began. I suppose one could say I suffered from teenage invincibility: "It won't happen to me."

But it did happen to me. And when it did, it slammed me into a brick wall, where I came face to face with an ugly, hateful reality of life.  The aging population gets shoved aside while the rest of us move forward at breakneck speed. It's true. Our society worships youth and material possessions, not wisdom, spiritual growth and healthy relationships. (But that is a blog post for another day.)

When my mom moved into skilled nursing and I had hopes that she would work her way back up, not down, I became aware of too many elderly folks living in a sad, lonely state.

I looked around at the folks in long-term care and ached at their plights. Many of them rarely, if ever, had visitors. One man in particular, had no family at all. The facility was his home, and the staff was his family.

Now, my mom is in long-term care. The majority of the residents where she stays use wheelchairs to get around. Some have hopes of walking again; many don't. Many residents have Alzheimer's or some other form of dementia. Others just have needs too great for families to handle in other settings.

I get all that. However, I have difficulty seeing the sad, depressed faces. One woman sobs in her wheelchair, which breaks my heart. I hate witnessing the loneliness of this woman and others. The blank faces devastate my sense of all that should be right with the world.

While I can't aim my arrows of blame in any one particular direction, the reality still is just wrong. No one wants to live like that, any more than the majority of us want to be homeless, or mentally ill, or dirt poor or paralyzed or whatever other horrible circumstance you can imagine.

My greatest blessing

I said when I started this blog I would share the blessings I have experienced since my mother's stroke on Oct. 16, 2014.  That's when, between her stroke and my dad's advanced cancer, life became difficult in a way I've never before experienced.

But I've been amazed at the "little" things that really aren't that small once one has reevaluated her life and priorities, and suddenly, life's focus zooms in on right behavior, right motives, loving people genuinely and allowing others to genuinely love her.

One of the blessings, which really have been a series of many, is people -- people reaching out to show love and caring. People who love my parents and, who, in turn, have shown they care for me, too.

Let me provide some background to shed some light on this phenomenon of simple kindness and love between humans in this crazy, messed up, and sometimes extremely ugly world.

I had a series of experiences -- mostly, but not completely, troubles of my own making -- that bottomed me out roughly two years ago.

After that, and as the beginning of my healing process, I fell off the face of the earth for awhile. I needed time to myself and my family. I needed to focus on my own health and well-being. I needed to simplify my life and re-evaluate all of my activities and habits.

In short, everything changed. And, truly, it's all been for a life I've come to like and appreciate. As a side effect, though, I became somewhat of a recluse. I suppose you could say I feared other people once my new life began. I have needed to keep my world small and simple; it had been painfully overwhelming and unpleasant.

Expectations are the devil

"Sometimes we create our own heartbreaks through expectation."

"People are not here to meet your expectations."

"Sometimes we expect more from others because we would be willing to do that much for them."

"The key to happiness is letting each situation be what it is instead of what you think it should be."

"Expecting is my favorite crime, and disappointment is always my punishment."

"The key to happiness is lower expectations."

I could go on and on with expectation quotes. In fact, I love quotes of all kinds. I have collected volumes of them on my Pinterest boards.  Sadly, I have all of these reminders about the dangers of expectations, yet I'm still their vulnerable prey.

Expectations -- my own and other peoples' -- have caused me much grief during this parent drama I'm experiencing right now.

I discussed expectations at length in "Anger has its place."  The expectations (i.e., hopes, dreams, desires, etc.) my sister, my dad and I have had during this time, and even my mother (freedom), have wreaked emotional havoc on our lives. What we want for my mom and dad, and what my dad wants for my mother are simply expectations of the way we think things should be.

Unfortunately, as previously discussed and discovered, life simply doesn't work that way. Instead, it's all about dealing with life on life's terms. As it should be.

But those aren't the kinds of expectations giving me trouble these days. Another kind of nastiness exists. I'll call them "behavioral expectations."  In my head, they look like this:

"I should be able to be with Mom all day, AND be patient with her at all times, AND keep my house clean AND pay and file my bills AND plan meals and cook for my family and my dad AND look after my dad AND feed my animals on time every day AND do and be all the things my husband wants from me,  AND give each of my furry babies adequate attention AND shop for groceries AND go to all of Jordie's baseball games AND bake for Jordie every weekend AND make up my bed every day AND exercise at least five times a week AND eat healthy AND work."  (I must say that, usually, Voice 3 is at fault here. I hate her. She is such an ass.)

AND AND AND AND.

Kim is going home today

As many of you know, my sister, Kim, has been in Amarillo since Oct. 16, 2014.

Today, she flies home. I can imagine she's excited. She's going home to her husband, her son and her Izzy and Raider puppies. She's going home to her own home. She's getting back into her office, rather than working long-distance.  I know just how she must feel, actually; I was away for three months, once. It's like walking into a new life when you get back home.

I know she's feeling trepidation, though. I mean, she is Super Woman and won't be here for immediate fixes. I know she'll be at home in the middle of her work day, stressing about what's going on in Amarillo with Mom and Dad. That's just her. (But I would do the same.)

And, I know my dad is nervous; Kim's been keeping him company and managing the house for him.

And, of course, I'm afraid. I feel somewhat like a person must feel who is facing her execution. STOP! NOT REALLY! That was just a mean thing meant for Kim. I know, I know, that's just wrong. We sometimes do stuff like that to each other. We may be getting old, but some things still don't change. ("She crossed my line!" "That's mine!" "Mom! Kim's rolling her eyes at me! Dad, Jami's being a pest! Kim hit me with a vacuum cleaner!)

During these past few days, I can tell Kim has gotten more anxious, probably because she's heading home and doesn't know what to expect (like any of us), and because she's just plain exhausted. Remember how you felt with that newborn baby? Twenty-four-hour care? Yep, that's us.

So with that anxiety and exhaustion, Kim has been a little ... um ... edgy. Snippy. You know how it is. Several times during the last few days, I've said to her, "Now, when are you going home?" (Same thing I do to Dorsey when he's getting on my nerves: "When are you leaving again?")

You can help in the greatest way!

"We’ve had great times together….. remember the time that Jim and Dean were to have played in a golf tourney connected with TGCA clinic……..the tourney was in Bastrop and even with all the information and directions they somehow managed to end up west of Austin instead of east…….my kids and I were headed to the mall when they unexpectedly came back to the hotel room telling us they’d gotten lost and missed their tee time. Your mom was in our room when the guys came back and she looked at Jim and very gently said, “you’re just pitiful!!” Neither of these excellent coaches had any sense of direction and I guess we shouldn’t have presumed they’d ever find Bastrop!! I took them myself and guess they found someone to get them back to the hotel. Oh my, that’s just the tip of the funny stuff!!" -- JoAnn Weese (wife of Dean Weese)

As if your prayers haven't already been enough, JoAnn Weese's comment planted a brilliant idea in my head!! (Thanks, JoAnn.)

And, seriously, there's nothing in the world better than sincere prayers.

BUT ...

My parents' 50th Wedding Anniversary is Jan. 23. Fifty years! That's a long darn time to love someone. (It's also a long time to put up with someone.)

So here's what Kim and I are thinking. Mom and Dad know a lot of people, and a lot of people seem to really care about them (thank you so much). We very much want to give them the best anniversary present they've ever had, and that is a collection of good memories about them. 

I would say that after 55 years of togetherness ... in sickness and in health, for better and for worse, good times and bad ... they stinkin' deserve the great memories. (And, frankly, Kim and I get a kick out of hearing these stories, too.)

A Verdict is in

Just as everyone grieves differently, people also tend to process information they hear differently, especially upsetting news.

My family and I have been told a variety of things since the day my mother had her stroke. We've heard:

•   She won't make it. (wrong)

•   She won't be able to feed herself. (wrong)

•   She'll not regain use of her left side. (true, so far)

•   The right side of her brain has been shredded. (only a neurosurgeon can see this)

•   Miracles happen all the time. (true)

•   We've seen everything happen in cases like these. (OK)

•   It will happen again. (time will tell)

•   She needs 24-hour care. (true so far)

•   She'll get better. (in some areas, yes; in others, no)

•   She'll get worse. (in some areas, yes; in others, no)

•   Physical therapy will help. (slowly)

•   Physical therapy won't help. (<sigh>)

•   No gains will be made after two months. (not true)

•   No gains will be made after six months. (don't know yet)

•   No gains will be made beyond a year. (don't know yet)

•   This was caused by "amyloid angiopathy." (true, biopsy said so)

•   She'll be able to transfer herself. (not looking promising)

•   She won't be able to transfer herself. (looks that way)

And so on and so on.

In a nutshell, this is how I've processed all of that: She had a horrible stroke in which she was "lucky" to survive and given an opportunity to get better. She may or may not get better, but hopefully, she will. Even if she gets better, this is most likely to happen again, although we don't know when. Physical therapy and other therapies can help right up until that day happens, if it does. I think she can learn to transfer herself, and therefore, she and Dad can live somewhere together; we just have to find where. I really want to build behind our house so they can live with us, and I can take care of them. 

Anger has its place

My problem is not that my dad is dying of cancer; nor is my problem that my mother is slowly slipping away from me as the mom I've always known.

My problem isn't that my mom doesn't understand what's happening to her or that my dad is distraught and failing to take care of himself; and my problem isn't that we don't have obscene enough amounts of money to provide one-on-one care for my mom or a more comfortable living environment in which my parents can live together.

The problem, now that I've slowly come to realize I am not God,  is that I have not yet accepted these painful, ugly realities of my life right now.

As I result, I am angry.

In fact, sometimes I feel enraged.

But I have absolutely no one and nothing on which to blame the exhausting, overwhelming feelings of powerlessness, fear and rage I have been experiencing since this all began. Believe me, I've tried to place blame. I've been unjustifiably angry at myself, my dad, my husband, my cats and dogs, my son, my mom, my bank account, my sister and my brother-in-law, and, sadly, even God. It's all been a pathetic attempt to somehow make myself feel better and more in control for even just a short second.

It has not and does not work. 

So I've been leaning on my amazing support system. They listen to me, guide me, commiserate with me, and assure me that, they, too, have survived such nightmares with their sanity intact.

Voices in my head ...

Don't judge, but I have three voices in my head ... well, actually, I have four, but one is so disagreeable, harsh and shock-provoking, she can't come out to play today.

These voices have been at war with one another for awhile now, especially as my sister and I try to figure some things out and make decisions regarding our parents.

Voice 1: Something has to give. You can't keep going at this pace.

Voice 2: I have to take care of my parents.

Voice 1: But you don't have to become unhealthy in the process.

Voice 2: I won't become unhealthy. I've never been that healthy to begin with. :-)

Voice 1: Not true. You're finally on the right side of crazy.

Voice 2: Um ... really? I'm having a conversation with another voice.

Voice 1: Everybody has voices. As I was saying, you and Kim are going to have to find some balance. Y'all can't continue at this pace.

Voice 2: Kim's going home soon.

Voice 1: All the more reason to get it together.

Voice 2: I would like to find a workable balance.

Voice 3: Yep, you're butt hasn't seen a workout in three months. FAT ASS.

Voice 2: Then why are my jeans getting looser?

Voice 3: Fat. Flab. It's all the same. You need to get to the gym.

Voice 1: Shut up, 3. You're not helping.

Voice 2: So what do I do? Dad's tired, sick, depressed and eats only once a day. He doesn't shop for groceries, and he doesn't cook. Kim has been taking care of that. I don't have time to cook for him because I'm with Mom.

Voice 3: He's a grownup. He'll eat when he gets hungry.

Voice 2: You clearly haven't been paying attention, 3.

Voice 1: If you spend less time with Mom, you'll have time to cook again, and you can help him that way.

Voice 2: Then who will take care of Mom? Between the two of us, Kim and I have been spending roughly 10 hours a day with her.

Voice 3: Uh, hello? The people you PAY to take care of Mom.

Voice 2: The people we pay to take care of Mom can't be with her one-on-one, 24/7. It doesn't work that way.

Voice 3: It should work that way.

Voice 1: Can't get caught up in the shoulds, 3. If money weren't an issue for ideal care, things might be different, but for now, we have to deal with what is.

Voice 2: And what is is about to be worse than what we're doing now, because Kim is going home, rightfully.

No good answers

Five minutes after I learned my mother had her stroke, I called my sister, Kim, who lives in Flower Mound, to tell her. Kim immediately got on the first flight to Amarillo, and arrived just in time to sit through Mom's emergency brain surgery. She has been staying here since that day.

She went home for a total of five days in November, I think. But that's it. For two-and-a-half months, Kim has lived with my dad instead of with her husband and 15-year-old son. Thank God Vince and Cole understand. Unfortunately, Izzie and Raider probably don't understand too much (the mini schnauzers).

But it's going to have to end. She and they cannot go on this way. She has a family and a business to run. She has sanity to retain. Most of it is still intact, but believe me, she and I are both exhausted and stressed out because, truly, dealing with both of my parents' illnesses and the effects these illnesses are having on each other, is like Forrest Gump's box of chocolates: We never know what we're going to get. Every day is different. Hell, every hour is different.

Figuring out how to send Kim home without creating more stress for the both of us (and our families) is where we are now. Kim, Vince, Dorsey (my husband) and I met for dinner last night (safely after both parents' crises had been settled) to discuss moving forward.

We figured out my mom's new temporary living arrangements, different from yesterday's temporary living arrangements, courtesy once again of managed care insurance. But we haven't figured out how to make sure my dad is OK from day to day, as well as how to manage being with my mother every day.

As for my mom, I have come face to face with the ugly, hateful reality of our elderly (no, my mother is NOT elderly, but she's with a lot of people a lot older than she) being taken to nursing homes and just left, for whatever reason. Some have families; some don't. Some have families who visit regularly to sometimes, and some receive no visits at all. I try not to judge families because I don't know every situation, but I can't help it.

What I do get and know from seeing this sadness is that I don't want it for my mom. Not now and not ever. I cannot stand the thought of it.

Nobody warned me

It's 16 degrees, cloudy and snowy. The weather pretty much matches my cloudy, dreary, depressed mood.

Wait, before you quit reading because it might sound all down and out, bear with me while I explain.

I'm sitting across from my sleeping mother in her skilled nursing room. This is her new temporary home. My dad is sound asleep on the mat beside her bed.  This scenario is a pretty accurate picture of the last two-and-a-half months of my life.

My just-turned 69-year-old mother had her second stroke on Oct. 16, 2014. This one was MASSIVE. And when she had this stroke, all of the attention in the family had been focused on my just-turned 70-year-old dad, who had recently finished up six months of treatment for stage four prostate cancer.

My sister and I traveled from what had been a fairly gentle slide into caring for aging parents to a rocket-like speed-race of hurry up and wait. Since Oct. 16, we have experienced the extreme darkness of believing my mom would have to be removed from life support to the joys and highs of sweet moments and hopes that Mom and Dad could live together again ... and back to the blackness of understanding my parents most likely will never live together again, my mom might never be "ok," and my parents will live out their lives emotionally separate from one another because of some of life's crueler cruelties.

But then again, sometimes we are surprised with blessings, such as when my dad's body scan of his bones showed no cancer growth. THAT was unexpected (from me) news on Tuesday. One of the most horrendous realities of this ordeal with my mother has been witnessing my dad's emotional and physical health decline by leaps and bounds. He says he can handle his cancer just fine. But, he says, he simply CAN'T deal with watching what's happening to the love of his life for 55 years.

Who can blame him? She has been his rock and best friend since they were in high school. They've been through truly wonderful times to hell and then back again during their time together. Seriously, is it going to end in disappointing heartbreak? Please, God, no.

So these last two-and-a-half months have been crazy for sure. I never want to experience it again, yet I know "it ain't over yet." So my sister and I brace ourselves for more.