Poppa at 90

Poppa made it to 90.  For weeks leading up to his birthday, he often seemed anxious about the date and when I asked him why, he replied that he didn't want to miss his birthday! My sister, Kacy, flew in late Thursday night and surprised him by waking him up the next morning. He was a little confused but when she told him she had come to celebrate his birthday with him, he was pleased. Poppa seemed to feel well and was mentally in the moment most of the time, slipping into fuzziness now and then, as was his custom.

Because Kacy had to leave on his actual birthday, Sunday, August 5, we planned his party for Saturday. Not wanting to buy gifts for the man who had at least one of everything, we bought a half-dozen silly musical cards, streamers, balloons, confetti, party beads and a helium fish balloon as well as party plates and napkins. We comisioned two dozen gourmet cupcakes from a friend and Tim cooked Pop's favorite dinner of corned beef and cabbage.

The meal was festive and Poppa ate a lot of everything.  Afterwards, we gave him the cards to open.  He couldn't actually hear the silly songs in the cards so he missed the humor but he smiled graciously.  Everyone was later shooed into the living room while we tidied up and got the cupcakes ready by placing a couple dozen skinny party candles in them and setting them ablaze. Poppa's face was alight with joy as well as from the candle glow.  It was a precious time.  I think we watched a movie but Pop tired early and went to bed.

The next day, Sunday, he slept all morning, as he had been doing more and more often. When I told him that Kacy was going to be leaving soon he finally got up and sat in his chair.  Kacy hugged him and cried, Pop telling her how much it meant that she had come for his special day.  We drove her to the airport and sent her on her way, knowing that she would most likely never see Pop again.

Poppa fell back to sleep in his chair.  It was later in the day when he finally woke up enough to receive his birthday phone calls.  I overheard him saying something to my brother, Bud, like, "Oh, I guess I'm 91. I don't know where the time has gone...."  I think he was confused that Bud was wishing him a happy birthday again, and he figured a year must have slipped by somehow.

The week following his birthday Poppa passed in and out of dementia.  One day he would sleep, the next he would seem fine.  His pain didn't seem to be unmanageable.  He would be better by bedtime and would invariable ask me what adventures lay before us the next day.  After Friday, though, he never really came back into the present.  He became increasingly confused.  Even though he still knew us, he couldn't reconcile that he was in his own home.  His thought we were in a hotel and it concerned him that all of the "people out there" needed looking after and he couldn't decide what needed to be done about it.

His last week was not an easy one.  He lost contact with reality and became fretful.  Finally he deteriorated to the point where he was upset and angry that someone had placed all of his things "here."  But he was adamant that it was not his home and that made him very unhappy.  By the following Thursday he was slipping into total dementia and needed round the clock care.  Thinking that this was the way things were going to be for some time to come, we hired Angels on Duty to fill in the hours between 11 PM and 7 AM and also on Saturday to help with bathing and his personal needs. The hospital bed was installed on Friday.  About the only thing that would wake him was the urge to go to the toilet but by Saturday he was too weak, even with assistance, to make it into the bathroom. The visiting nurse and I cleaned and changed Pop around 11:30 PM and I left her with instructions to call me if there were any changes, no matter what the time.

Sunday morning I tossed and turned from two o'clock onward.  I finally woke up enough around six to realize that I needed to get up and check on Dad.  When I got in the room his breath had deteriorated into a rattle and I was so shocked that the "nurse" hadn't realized that it was a sign of impending death.  I woke Tim and Ben immediately and called hospice. The on-call nurse came until our nurse, Anita, arrived. I called Cara in Springfield and she drove down as quickly as possible.

I spent most of the day on vigil by the bedside, holding Poppa's hand and cooing to him, telling him it was okay to leave us, that we would be fine.  People passed mugs of steaming coffee to me and hugged my shoulders but, except for a few moments, I don't think I left the room.  Poppa passed away early in the afternoon. I cried, selfishly in my grief, "what will I do with myself now?" because caring for my father had become my full-time employment, my sole focus in life.

He was so much more ill than we had known.  The cancer had gone crazy in his body and done terrible damage in just a very short time.  Had he known or was it God's mercy that he had increasing dementia so that he wouldn't understand?   We will never know.  The end came so amazingly quickly.  Just when I was feeling like this part of my life was interminable, he was gone.  And right up until almost the very end he was still wanting to go out for some adventures, he and I, shopping, going to lunch, messing around.

Thank you, God, for the opportunity to serve my dad.  Thanks for the time to get to know him in this special way, to love on him and spoil him.  And I am grateful for every day that I had to call upon Your strength to get through it because it has made me stronger.  Nothing else would have stretched me to such a degree that I, coming to the end of myself ten times an hour, would gasp and grasp the hand that sustained me.  So that when all was said and done, I'd know that it was He in me and not myself that gets the glory. But Poppa made it to 90.

Life with Poppa

It was a year ago, to the day, when Poppa's radiation was began. Today we found out that not only is the cancer growing again but it is very active.  

It had been bothering Pop for a long time, but being a typical male of his generation, he didn't mention it to anyone. Well, actually, he DID complain of chest pains that, it turns out, were radiating from this mas. Several times over the last two years Poppa has been rushed to the hospital with these symptoms which were mimicking heart attack symptoms.  When the connection was finally made, we were sent scurrying to a surgeon who removed as much of the mass as he could, but left what was attached to the chest wall.  The biopsy resulted in the diagnosis of squamous cell carcinoma.

41 trips to the radiologist.  Eight and a half weeks (one half week off for rest) of daily trips to the cancer clinic. Pop and I would head out in all types of weather, enjoying the time together in the car, stopping to do errands on the way, called it our "adventures."

O my, what a year!  So many life-altering events have taken place in the last 12 months.  So many, in fact, that I had to write it down, fearing that no one would believe me.  I don't know how many trips we made to the hospital.  Starting with Pop's lumpectomy, followed by radiation, weeks of kitchen remodeling, Mom's emergency surgery which caused her heart failure and move into hospice care, closing our studio (Tim packed it all up by himself as I was caring for Momma) and emptying it with no place to move it to, Mom and Pop's ranch in Alabama selling and Tim and I going to get their stuff, moving our renter out of the cottage, renovating the cottage into our studio and moving into it, waves of relatives coming to spend time with Momma during her last days, Mom's passing July 26, and after her cremation we hurried to Alabama for the memorial before my brother Bud moved to Arizona, Poppa had cataracts removed from both eyes and a cancer removed from his left eyebrow (turned out to be squamous cell also) and extensive repair to his brow, and lastly, during a follow up for that procedure, the cancer on his right eyelid was found, biopsied and the basal cell carcinoma that was removed was even larger than the cancer on his eyebrow and required extensive skin grafting and reconstruction.  

Pop has endured it all with grace.  He misses Momma, his life partner of 68 years, but hasn't grieved inordinately or fallen into despair.  It has aged him, changed him and worn him out.  At least when Momma was alive he had a purpose which was to look after her and spoil her, as he always had done. Now he lacks purpose. The once formidable, robust man is frail.  He is still mostly independent but needs me to make sure he gets his meds and checks his blood sugar and injects his insulin.  I make his meals and encourage him to eat because he has so little appetite. He leans on me when we walk and depends on me for his companionship. Recently I've noticed that he's made the cognitive leap from being the man in charge to the one being cared for.  In all of this he says he is as happy as can be expected, given the circumstances.  He says he could never have gone through it all if he hadn't been here with us.  We still see flashes of his lightning wit. 

In the morning we take Pop to the oncologist to decide what, if any, treatment he will pursue in regards the tumor growing under his arm.  As it is, it presses on nerves which cause him intense pain that radiates from under the arm across the chest, mimicking heart pain.  We manage the pain now, but know not what will be required when the tumor grows.  The plastic surgeon has tried to repair the damage caused by the cancer on his face, but his appearance is drastically altered.  What will be required to stop the outrage of cancer growing in this 89 year old body?  How does one make the choice to poison the cancer with drugs,knowing that the side effects might potentially sicken him to death but at the same time, how can one choose to not fight back, knowing that if he doesn't he will surely die of it, not to mention the increasing pain? 

More and more often I find Pop sitting alone in his living room without the television on, no newspaper in his lap, head down.  I think he is praying.  He doesn't talk about his faith but he is calm and prepared.  I know he is battling despair, as am I, come to think of it. Yesterday I read in Psalm 46 that "God is our refuge and strength and a very present help in trouble."   We need your help, Lord, this day. Bless my Poppa.

  

  

The Caregiver

I found it in the kitchen drawer. Cryptic notes on a page from a tiny tablet, dates, times, and amounts of liquid morphine and the other medicines I had given Mom her last few days of life. I'd had to write it down to keep it straight in my mind.  July 24, July 25,  right up to 11 AM on 26th, the last time I gave Mom her meds.  She opened her eyes and her tiny little breaths, short and gasping, ceased.  She quietly passed from this world at 12:06 PM.  I am unwilling to part with this little piece of paper.  It means something but I don't yet know what it signifies.

By placing myself here, at the keyboard, I'm feeling a heavy weight bearing down on me.  I don't want to write, haven't written since February.  I have been telling myself to channel my grief and sadness into my paintings, into the non-verbal discourse of art.  But that's not happening.  I'm sort of stuck, plugged up, corked (I think they call this "denial.")  I'm wondering if I've even begun to grieve.

Sadness and grief are partners but they are not the same.  I am sad, most certainly.  But there are feelings buried inside that I don't even begin to want to explore. Perhaps it's like returning from a trip or retreat or "mountaintop" experience; not wanting to talk about it too much for fear the telling of it is remembered more than the experience itself.  Are these memories too precious to be spoken of or too painful to admit?

Maybe I should begin by telling you that I was my mother's caregiver.  What a dignified title, "caregiver."  I didn't seek it but I  accepted it and I think I eventually learned to do it well.  Finally.  In the last few days of my mother's life.

I had really hoped that when Mom and Dad moved in with us they would be able to enjoy life in Saint Charles.  I dreamed of Mom and me going shopping and enjoying painting together.  I hoped Pop could walk up and down Main Street, smoking his cigars and flirting with the shopkeepers.  But by the time we convinced them to move in with us, Pop was recovering from triple by-pass and gallbladder surgeries and Mom's leukemia and congestive heart were advanced.  She was already dying, had been dying, by inches for a very long time and we just couldn't see it.  That sounds paradoxical because we had thought she was dying, expecting it for years but she had this amazing knack of recovery.  Total rebound that made us question each episode that preceded it.  Now, looking through the lens of the last few months, I see it all much clearer.

It didn't happen the way I'd hoped.  Mom lived here pretty much the same way as she had before coming, mostly in the bedroom and sleeping much of the time. We did a couple of shopping trips, a few lunches out, and maybe one or two times in the studio.  She expressed much regret and a lot of desire but never had the physical or mental energy to get out and do things.  But the one thing that I regret the most is that Mom was disappointed in our relationship.

Mom had anticipated life here as an extended vacation, much like the times that I had spent with her in their home in Alabama when we came to visit.  At the time they moved in with us, Tim and I were still teaching classes two-three nights a week and had a studio and gallery to run.  Even if I had had nothing to do, I still wouldn't have wanted to sit beside her bed all day long, to the exclusion of all else, drinking coffee endlessly and waiting on her needs (this was pretty much how my visits to Alabama went.)  But not only that, we found ourselves butting heads over almost everything, especially the dispensing of drugs.  And as the caregiver, I took that business very seriously.

If it was a matter of giving something other than the doctors had prescribed, I could not be swayed. My mother met her match in me.  Mom, who had spent her entire life governing herself and making up her own mind about which drugs to take and how much and when, now had a daughter telling her what she could and couldn't have.  We argued about this and other things, and Mom lamented that I was not the "Chrissy Jane" she thought I was and that even though she was so thankful to have my care and to be living with me, it was not what she had anticipated.

Now for my moment of self-justification:  even when I did take the time to sit with Momma, she would pick up a magazine or watch tv or most often, take a nap.  I would slip away and return to whatever I had been doing.  I thought that between mealtimes and coffee times and bedtime snuggles we had shared a lot of times but Mom said she thought it would have been better if she had stayed home.  At least, she thought, the boys checked in on her now and then.  No matter Dad was in his chair just outside the bedroom door.  No matter that she had been desperately lonely on the farm before she came.  No matter that we were living together, not visiting a few brief days a year.

She was dying and needed lots of love and reassurance.  Because I was suffering from caregiver fatigue, and because she'd rallied so many times that neither I nor any one else believed she was ever going to really die, and mostly because it happened so gradually that I didn't believe the evidence before my eyes, I withheld the last bit of energy and love that I could have given.  Until she was really and truly dying, and then I gave her my all.        

In Between

It's hard to put into words. It's like I'm living on a precipice, teetering over the edge of the falls. The view is phenomenal, the thrill is exhilarating, yet I have an awareness of how precious life is and how quickly things could change.

I hurt for my sick and ailing parents whose days are growing darker. I'm no expert on the subject but research has shown that life is 100% fatal and my folks are no exception. It's painful to watch as they grapple with their own and each others illnesses. Both have bright minds that are being turned inward towards pain and suffering. More and more things are done for them that they can no longer do for themselves. And they are fearful of losing command of their lives and their possessions and thereby autonomy.

Yet I've never known such joy in living as I have today. My husband and I are more in love than ever. My work is satisfying and it compels me to rise early every day and hurry to the studio. I'm living in between.

We're heading for Alabama in the morning. Dad has had two surgeries, three ambulance trips to the emergency room and four admittances. I don't know what to expect as we return. I know one thing, my work is cut out for me: I've got to encourage them and help to hold up Bud's hands. He's strong but needs support.

Forgive me if I sound selfish when I wonder when I get to take a vacation that isn't to see the family in Alabama. Tim and I took one trip to Wisconsin three years ago for a weekend in Two Rivers. Alright, we took a load of pottery to sell, but it was primarily a vacation. Our first ever in 35 years that didn't have family at the other end. The first morning we woke up to a phone call from the nursing home that Tim's mom had passed away during the early morning.

But really, aren't we always living between two worlds? Aren't we, as Christians, working and waiting for the "big reveal" when Jesus comes again? The Bible tells us that when he returns it is for judgement against evil and wickedness, but also to do the ultimate makeover on the earth. We aren't just pilgrims passing through this life, but passengers on a wayward planet, struggling to do what is in our power to preserve and restore people and the earth to their right relationship.

So, even though my life and work are richer and more fulfilling every day, I am aware of the slender thread that holds it all together. That thread will snap any day and one of my precious parents will pass through the veil, to be shortly followed by the other. This is life, lived in between.