Monday, March 13, 2017

What's Next? Part 14 Things Can Get Complicated

Sunday night went fairly well.  At least I figured out how to get the kinks out of the baby monitor system.  I didn't sleep very well, though.  Carl was restless last night; he usually sleeps on his side, but around 2 AM he'd rolled over onto his back and started to snore.  I hated to nudge him to roll over again, but I couldn't hear the baby monitor over his rasping.  Once I had Carl back on his side again, the baby monitor picked up Mom's slight snoring.  The noise was reassuring; at least I knew she was asleep, but whenever she'd have a slight break in her breathing rhythm, I was wide awake.  

At some point I must have dozed off.  Around 4AM, Mom began to stir and this time I was right on point.  I managed to unclasp my sleep apnea mask and grab the baby monitor all in one fell swoop instead of fumbling around like I usually do.  Waking up with a clear head and fantastic coordination is not my strong suit, but I'm getting better at it. 

Reaching for my cellphone on the nightstand, I quickly pulled up the camera app and could see Mom was sitting up in bed with her legs dangling off the side of the bed.

"Do you need to go to the bathroom?" I asked, speaking through the baby monitor.

Mom jumped a little, peering myopically into the dark room, "Yes....where are you?" 

"Just wait, I'll be right there," I promised as I located my spectacles and thundered down the stairs.

"What time is it?" Mom asked, peering with no luck at her clock radio.

"It's 4AM," I said.

"Were you asleep?" 


"Well, how do you know I'm awake if you're asleep upstairs?"

"I'm a light sleeper," I said as I helped her walk to the bathroom.  

"You must be," Mom said.  "I wonder if you ever sleep at all."

Looking into the mirror this morning, I'm starting to wonder the same thing.  The bags under my eyes are starting to accumulate luggage of their own.

Mom sadly is still having issues with her bowels; no movement since last week Wednesday.  I was supposed to go out to eat with two of my dear friends from high school at noon today, but the logistics of getting people here to watch Mom for me was a bit too much of a circus.  Plus, if she needs to use the bathroom, I can't expect a volunteer to take that on.  My friends understand; and if nothing else, if they are still visiting at one of their homes by 3:30, I could drop in for a short visit when Carl gets home from work.

I will admit, people tried to make my little outing work for me, though.  Ann was going to come at 11 AM and stay until 1:30.  Then my friend Gloria was going to stay with Mom from 1:30 until 2:30 when (I think) a volunteer from hospice was coming, though I haven't had a confirmation as of yet.  The volunteer was supposedly going to stay from 2:30 until Carl arrived home from work at 3:30.  That was the plan, but wow, that's a lot of people to coordinate and have their days interrupted, too.  Talk about complications; and all for a few hours away from home when I'd probably only sit and watch my phone to see how things are going with Mom anyway.

I know I sound like a martyr, and yes, some days I truly am one of the Best Martyrs around.  At times, self-pity abounds and I'm not proud of it.  Though I know it is not the case, other people's lives are seemingly going on just the same as ever, but mine is upside down.  I told David I'd never realized how much I went outside before; how easy it was to pick up and go; and how wonderful it was to sleep without one ear open. 

 I'm ashamed I never realized what caregivers go through; the isolation, loneliness, and despair, especially in the early hours of the morning when everything seems worse.  The night hours crawl along, and I hate to even try to go back to sleep for fear I'll have to wake up right away.  Thank goodness for the weekends when Carl is home and I can at least catch a few hours of solid sleep when he's up for the day with Mom.

The guilt I feel for being resentful at times spins me around and puts me in my place; Mom is easy to please and I don't have it that bad.   If I were in her place, I would not want my daughter acting like a spoiled brat.  She's coping with the loss of her health, her home, her eyesight, and ultimately, her life.  Talk about having her life turned upside down!  And yet, is she complaining?  No.  

I do long for the time I hear Carl's loud muffler driving in at 3:30 every day, though.  When he arrives, I usually go out for a long walk in the fresh air, trying to shake off the lethargy of sitting, sitting, sitting.  Another admission of guilt: I was a petulant sock puppet about him leaving for his weekly slot-car racing engagements a few weeks ago.  Every Tuesday, Carl and Joel meet at varying homes to race slot cars with a group of people.  The meets start at 5 PM and, depending on the distance of the drive, Carl usually doesn't get home until well after 8-8:30 PM.  

Carl comes home all cheery, heading for the shower so he can leave at 4:30 PM for the drive back to Green Bay.  I was in a dark place and felt very sorry for myself.  Mom was napping at the moment, and I felt this unreasonable rage tinged with green-eyed envy welling up inside me.  

Perplexed, Carl halted on his way out the door, "Is there something wrong?"

"No, not a thing," I sarcastically hissed.  "Not a damn thing is wrong.  Just run along and have fun.  You know where we'll be when you get back."

"Wait a minute, I asked you if my leaving on Tuesday's was a problem and you said it was ok.  Now I'm leaving and you're mad.  You're sending me mixed messages.  Do you want me to stay home?" Carl asked.

"No, I don't want you to stay home," I said, treacherous tears falling.  "I don't want to be this way, but I admit, I'm feeling abandoned."

This all stems back to my childhood; my father loved to go to the tavern, usually six days a week (never on Sunday!) and was the same way when he left; cheerful.  After our noon meal, he'd wash up, change into clean bib overalls and shave every day, humming while he scraped the whiskers off his face in the kitchen sink.  He never hummed unless he was on his way out the door, away from the farm, away from us.  Satisfied with his looks, he'd go to the refrigerator and grab a pack of Camel cigarettes and a book of matches, check his wallet for money and, finally, turn to my mother and I and demand a kiss on his merry way out the door.  We were to wish him well, good fellow......carry on........we'll be here when you get back, milking the cows in your absence, chopping hay for them, shoveling manure.  Rest assured, your work will be done while you're gone.  The two inept, bumbling females will muddle through somehow, and when you come stumbling in around 8 PM and ask whether the cows were really milked and why weren't we out of the barn yet?  All the neighbors are done milking their cows, and here his barn lights were all on yet; people would know we were still in the barn!  Why couldn't we get an earlier start and not make him look bad?    

Never mind that Mom had been up since before 5 AM, pitching silage and carrying five gallons pails of hot water out of the basement before dawn year after year; milking cows with just a kid and that I still had oodles of homework to do before I could go to bed; no, none of that mattered.  We made him look bad.  Such killjoys.  Maybe now he won't talk to us for a week or two, that will teach us to get an earlier start.

All of these unreasonable thoughts went through my head while Carl was standing, dismayed, with his hand on the doorknob, still holding his slot-car case.  I could tell he was torn about going and I felt like the biggest jerk in the world.  He is not my father; he did not and does not abandon me with a man's work while he goes drinking; he only wants to have one night a week for a few hours, and I'm begrudging him.  

I told him to go, please, just go.  I'm sorry for my childish behavior.

He did go, and I was very ashamed.  Luckily, Mom was asleep, so she didn't witness my breakdown.  I don't want her to feel like she's a burden; she's all-too worried about that as it is.  She's not a burden, my God, how I will miss her when this is all over.   But I'm a frail, selfish woman.

One thing I've noticed is how people all see my life from a different angle.  I've been really surprised by some of the responses from my friends as this journey has unfolded.  Some people have understood my desire to have Mom here for as long as I can manage; others have been almost, dare I say it? outraged by what they see as denial on my part, in fact, friends who I've known have taken care of family members in the past are the most adamant that I have to throw in the towel sooner than later.  Some people have praised me for my 'selfless devotion' (ha, if they only knew my bouts of self-pity!) and others have almost condemned me, 'you are not a professional, how do you know you're taking adequate care of her?' 

Maybe they are speaking from a place of experience, from a place of exhaustion that I haven't reached yet?  I don't know, but I will admit the story of the boy, the old man and the donkey has never meant more to me than it does right now.

If you're not familiar with the tale, here goes (copied from the internet:
 A MAN and his son were once going with their Donkey to market. As they were walking along by its side a countryman passed them and said: “You fools, what is a Donkey for but to ride upon?”

  So the Man put the Boy on the Donkey and they went on their way. But soon they passed a group of men, one of whom said: “See that lazy youngster, he lets his father walk while he rides.”
  So the Man ordered his Boy to get off, and got on himself. But they hadn’t gone far when they passed two women, one of whom said to the other: “Shame on that lazy lout to let his poor little son trudge along.”
  Well, the Man didn’t know what to do, but at last he took his Boy up before him on the Donkey. By this time they had come to the town, and the passers-by began to jeer and point at them. The Man stopped and asked what they were scoffing at. The men said: “Aren’t you ashamed of yourself for overloading that poor Donkey of yours—you and your hulking son?”
  The Man and Boy got off and tried to think what to do. They thought and they thought, till at last they cut down a pole, tied the Donkey’s feet to it, and raised the pole and the Donkey to their shoulders. They went along amid the laughter of all who met them till they came to Market Bridge, when the Donkey, getting one of his feet loose, kicked out and caused the Boy to drop his end of the pole. In the struggle the Donkey fell over the bridge, and his fore-feet being tied together he was drowned.
  “That will teach you,” said an old man who had followed them:

(In another incarnation of the story, the moral was:  "If you try to please everyone, you will lose your ass.")

People have told me several times in my life, "God will never give you more than you can handle."  

Hmmmm.....I don't know if I believe it.  I do believe I am learning an important lesson here, even if I don't love every aspect of the experience.   I'm learning to appreciate the good times, even if they're only tiny moments of joy.  These are the things I've ignored all too often in my life.  The way the snow glistens like diamonds scattered in my path as I ski along in the wintertime.  The tiny chickadees who land on the trumpet vine with their impossibly frail-looking legs and chirp at me as I refill the bird feeder. 

This morning, after her tiny breakfast, I picked up an old book and started reading aloud to Mom.  Her eyesight won't allow her to read any longer which is such a shame.  After the first chapter, I glanced over; Mom's eyes were shut and she was slouched to one side in her wheel chair.  I stopped reading and her eyes opened immediately.

"I'm sorry, is this book boring?" I asked.

"NO! I'm loving it, I can picture everything as you read, please, don't stop."

I had a bit of a hard time choking back the tears that formed; if a little thing like me reading aloud to her makes her happy, how sweet.  She is so appreciative of each and everything I do, thanking me constantly for every attention, no matter how small.

She is teaching me a final lesson as my mother, the gift of selfless love.



FlowerLady Lorraine said...

Oh dear Karen ~ This has me crying. You are doing the best that you can and you will be blessed. Try to not let people's words get you down.

Care giving is such a hard thing, I know from caring for my dear husband those 4 months he was ill before leaving this planet to be with God. Watching him slowly go downhill was so hard. He never lost his mental capabilities and for that I am thankful. We talked about so many things, he told me over and over that he loved me and that I was a good wife. I would write down in my journal when I thought of it, the different things he said, and then wrote them together so that I can read them when I need a bolster of love.

Keep these dear sweet times with your mother locked in your heart. I loved how she was getting into the story of what you were reading to her and that she was picturing it all in her mind. Bless her heart!

You, Carl, your sons and friends are having to deal with losing this dear one from your lives and it is not easy. You are all dealing with it the best way you can. Just take each day as it comes. It is human to have melt-downs and pity-parties. Admitting how you feel lets out tension, and you and Carl's love for each other is growing stronger through this trying situation.

These last moments with your Mom aren't easy but they are precious. I pray you will feel God's love, peace and strength as you go through each day caring for the woman who gave you life, who has loved you through all these years. Like I said before, she is a trooper and she's who you got all of your wonderful positive traits from.

Life can be hard at times, we aren't promised a bed of roses, but we are promised strength from God to get through all of the rough patches. He has been my strength, He has given me peace and yes even joy again in these 4 years 3 months and 4 days of being a widow. I miss my dear husband every day, and my love for him still keeps growing. We will be reunited again one day.

It has been obvious from many years of reading your blog just how much you and your Mom love each other and how you and Carl have taken care of her. Be kind to yourself, take deep breaths, call on God for strength. He loves you and cares for you and what you are going through right now.


Love, hugs & continued prayers ~ FlowerLady

Charade said...

I'm so taken by your story and your willingness to share it. It brings back some painful memories of care giving in the waning years of my dad's life, but it also brings up some sweet memories, too. If there were some way to lessen the emotional burden for a care giver, wouldn't things be ideal? I don't know what that would be.

I do hope you can accept that you are doing the very best you can (that even includes pity parties, etc.) and that you continue to do all of it your way, regardless of any outside opinion. When your ordeal is over, never second guess yourself or what-if or if-only yourself. You're doing just fine. Love and peace to all of you.

Beth said...

Karen, you are a wonderful daughter and you're doing a great job. Just be sure to get some respite if you can, so that you protect your own health.
I am a caregiver for my mom too, although not in the same way. She is in a nursing home now. She has dementia and is quite frail and needs a great deal of help. It's been a difficult journey.
Blessings, Beth

PlantPostings said...

Oh, that is so sweet. You say you're being impatient and difficult, but I'm sure your mom appreciates each and every thing you do for her and each and every moment you spend with her. Make sure you take care of yourself, too. I know that's easier said than done, but it will help you to cope and make you a better care-giver for her. Bless you. What a gift you are giving to your mum!

Karen said...

Dear Rainey, thank you so very much, I've been wiping tears away reading your sweet comment. I'm so glad your dear husband was able to leave you with precious memories to cherish until you are once again reunited. Seeing Mom lose ground is the hardest thing I've ever had to face, but yet she manages to be grateful for what she has left. I will definitely keep these times locked in my heart. :-)

Karen said...

Dear Charade, thank you! I have had some second thoughts about publishing my pity-parties, but writing it all down is such a relief. This is a road others have traveled and to know I'm not alone with my not-so-wonderful emotions at times is also a great relief. Even though I'm in the midst of caregiving, I don't have a good answer as to what would be of the utmost to help to a caregiver, either, since we're all different, but one of my top three is having people I can talk to about my emotions, the good and the bad. Thank you for being one of those people for me. :-)

Karen said...

Dear Beth, hugs from me on your situation, too. Having your mom in a nursing home is not any easier, I'm sure. She is blessed to have a caring daughter to look out for her and be her advocate. Part of my respite is writing this blog and having kind people (like you!) let me know I'm not a failure. Please take care of yourself, too, and give your mom a hug from me. :-)

Karen said...

Dear Beth @ PlantPostings, thank you! I'm trying to work more exercise into my day, even if it means just walking in my living room during the Price is Right, ha. I loved your posts about the butterflies, it was exquisite and helped me forget my worries. Thank you again! :-)

Peonies & Magnolias said...

Oh Karen what a journey you, your Mom and family are on. You're in our thoughts and prayers as it continues. Make time for yourself and your health as you care for your Mom, sounds like you are doing a tremendous job caring for her. I applaude you for that and my heart breaks reading of all your ups and downs. Hang in there!!!

Karen said...

Peonies&Magnolias, thank you so much. I can use all the prayers we can get. The loss of her vision was the cruelest blow, but she's doing her best to rally. :-)

africanaussie said...

blessings to you dear Karen. thank you for sharing your thoughts, fears and ups and downs.

outlawgardener said...

I treasure every moment I got to spend with my mother during the last year of her life, the simple joys and last lessons of those hours remain in my heart as some of the most wonderful of our relationship. Your feelings are your feelings, no need to justify them. Your decisions are the right ones for you. Wishing you continued strength at this time. You're a true gardener, dear Karen. In the harsh and sometimes hopeless-seeming days of your childhood, you've sown seeds of love, hope, and beauty all around you, have created a garden masterpiece in a harsh climate, created sparkling wonders in glass, built a strong relationship with Carl, and created Joel who's made adorable Audrey, a sweet new branch on your family tree. (Was thinking of something about self-seeding but thought that might be in poor taste:) Your compelling stories are an inspiration. As you walk this path, may you be surrounded by love and grace. P.S. You're entitled to be emotionally fragile when your life turns upside-down!

outlawgardener said...

Oops, sorry to have forgotten David for a second there in my last comment.

Karen said...

africanaussie, thank you so much!

Karen said...

Peter, thank you so very much for your kind comment; it brought tears of comfort. I'm sure you miss your own dear mother very much, she must have been an extraordinary woman to have raised such a caring son. I am so humbled by the outpouring of affection from my dear blog friends. :-)