Love

Living with my mom, I am discovering, requires the love Paul expounds on in his letter to the church in Corinth. You know, the famous "love is patient, love is kind" verses. The ones lots of folks think are appropriate for their wedding sermon. I thought living with my mom when I was growing up was challenging and required patience. That was easy. I am learning that showing love, true Christian, Jesus-type love, to someone who does not know really HOW to love, is a gargantuan feat.  Impossible to do without prayer, without help, without God. It also helps to have a sense of humor, and to be able to journal my experiences as I am going through them.  

Through them. That sounds nice. Because the word "through" denotes there is an end somewhere. So, here is my situational, hopefully not irreverent interpretation of those famous verses in 1 Corinthians 13...

Love is patient, But seriously, how can it take 90 minutes to buy three things at CVS?

Love is kind, What?  Look at your colostomy bag to check for leaks?  Sure!  I'd love to!

It does not envy, not even your sisters for not being in your shoes

It does not boast about how my dogs don't poop on the floor 

It is not proud and continually reminding Mom about how much I do for her

It does not dishonor others by feeling entitled to special treatment or sympathy 

It is not self seeking -- I don't really need more than four hours of sleep anyway

It is not easily angered even when she needs me just as I lower myself into that nice, hot bath

It keeps no record of wrongs because moms never do any wrong, anyway, and then she'd forget if I told her, so what's the point?

Love does not delight in evil but rejoices in the truth, but when it comes to the location of her car keys, I will lie to her face

It always protects, as in not telling her where her keys are (you are welcome, driving public)

always trusts that the nurse will show up on time

always hopes that the ostomy bag will not spring a leak at 2 am

always perseveres because repeating myself constantly is good for my communication skills

Love never fails because so many things in life DO fail, we have to have one thing that doesn't

and then there is always chocolate....

Anger begets anger

Got in a verbal fight with my mom tonight. Got so upset and so hurt that I lashed back. Angry words, angry gestures, angry actions. Not pretty. Not productive. Not helpful. Not loving. Definitely not Christian behavior. Doesn't matter what started it.  

Why do I still seek her approval and her love? Or anyone else's for that matter? The only one whose approval I should seek is that of God...and He has already redeemed me, and is still sanctifying me through the work of His Holy Spirit. As long as I am being sanctified with His grace, to do His work, I should need no others.  

There are books and programs that will try to decipher and decode the complicated mother-daughter relationship.   

There are plenty of doctors and psychologists who want to put labels on anti-social behavior.  

Pharmaceutical companies are constantly marketing the newest antidote to whatever ails our body, our psyche, our emotions, on TV, the internet, and radio. Convincing us we are in control of our bodies, our lives, and that all we need is the right pill to fix any ills.  

There is only one Book to follow.  

Only One I need to please.

And I cannot do it alone.

Twelve days of christmas

On the first day of Christmas my mother gave to me, 

A barking growling dog named Benji

.......and so on..........

On the twelfth day of Christmas my mother gave to me

Twelve manic outbursts

Eleven loads of laundry

Ten ER visits

Nine "ow"s and "shut up"s

Eight leaking stomas

Seven joints a hurtin'

Six new prescriptions

Five G I A N T burps!

Four nurses calling, 

Three hours of sleep,

two soiled sheets, 

and

A BARKING, GROWLING DOG NAMED BENJI!

Anecdotes

Just when we thought we were getting used to our new "routine" of caring for my mom, Alex's mom had a heart attack.  As she happens to be the sole caregiver for a husband with advanced Parkinson's disease, this health crisis was catastrophic.  So, Alex got on his white horse and drove to the rescue, leaving me here with Mom and the dogs.  We have spoken at least once daily over the past two and half weeks, swapping funny anecdotes to make things seem less serious than they truly are (because we have enough seriousness going on).

Alex:  I'll call you back.  Dad decided to test the generator at 9 pm and it's a cluster here

Alex:  I am making meatloaf.
Mom:  Cannot eat that!  My diabetes!
Alex:  But you are eating ice cream and a sandwich and applesauce
Mom:  It is no sugar added

Me:  Mom are you hungry?  I can make you breakfast
Mom:  No.  I will just have my coffee and a muffin
Ten minutes later:  Will you make me eggs?

Alex:  Mom, I am making peas for dinner
Mom: I'm allergic to peas. I will eat mixed veggies
Alex:  There are peas in those.
Mom:  I know.

Me:  Mom why are you stripping your bed?
Mom:  Because it is Saturday
Me:  But we just changed the sheets two days ago!
Mom:  But it is Saturday.  I always change them on Saturday.

Alex:  Dad, the nurse is coming in the mornings to get you up.  Why are you already sitting up?
Dad:  Because I want to be up when she gets here.
Alex:  You never did that for me
Dad:  I know

Mom:  Quit coming in my room unannounced!
Me:  But I have to let your dog out to go potty.
Mom:  Well of course!  Don't be ridiculous.

Alex:  Mom, I am making pancakes for breakfast
Mom:  I cannot eat gluten Alex!  I will have my rice cereal
Alex:  Why are there peanut butter crackers under the cereal in your bowl?
Mom:  That's different.

Mom:  Give me my keys.  I want to drive my car to pick up my prescription.
Me:    Okay.  Call me later if you need anything
Mom (later):  Barbie can you pick up my prescription?  I am too scared to drive

Alex:  There are three refrigerators here, and two of them are full of ice cream and frozen dinners.

One night at dinner, the salt shaker fell into Mom's potatoes.  She promptly lifted it up and licked it off.  And put it back on the table.

All in all, it is interesting. It is hard.  But if you cannot laugh at these things, you'll go crazy.

Resistance

refusal to accept something new or different, effort made to stop or to fight against someone or something; the ability to prevent something from having an effect

Yep. Those short definitions courtesy of Merriam Webster say it all. Lots of resistance going on lately. Alex's mom insisting her heart attack changes nothing, refusing to accept new ways of doing things. Refusing help with the caregiving of her Parkinson's disease afflicted husband. Fighting her son and his ideas at every turn. 
Mom not accepting her ostomy as permanent. Resisting learning how to change the device because that would mean it IS permanent. Not allowing her pills to work. Fighting me and clinging to the hope of something better.  Holding onto grudges.  
Me hanging in to grudges with my mom and family and resisting the urge to get over it already. Pouting over my self imposed circumstances.  
Resisting. Pulling away. Refusing. Blocking. Fighting. None of those are positive terms. They all involve negative energy, meaning the energy used to resist is subtractive. Draining.  
Accepting. Embracing. Holding tight. Welcoming. Positive energy inducing.  Additive.   
Letting go and letting God steer my ship.  
Without resistance. 

Another day, another leak

Today I decided to escape for a while, so after letting all the dogs out twice, I left to go volunteer at my little store downtown for a few hours, and left Mom a note to call if she needed me. She did, but not until about 3 pm--asked me if I would pick up her prescription for her. Seems she is too scared to drive after all...

Anyway, Dr. Jekyll was back today--nice as pie, acting as if nothing happened.  I should be used to this after 60 years of it, but it still takes me by surprise, this one minute mad, the next minute nonchalant--it is unnerving how there is no rhyme or reason or pattern to the mood shifts. No, more than mood shifts. It is as if one person leaves, and the other comes in her place. There is no warning, no forecast of cloudy weather...it is just BOOM! 

I think I could handle it much better if it was always one or the other. But this uncertainty, the sheer unpredictability of her moods--it is madness. Sheer madness. We went out to eat, and it was as if we were a normal mother and daughter. No talk of the blow up yesterday.

Then her ostomy started leaking on the way home. Poop everywhere. Had to call the home health agency at 9:00 at night. Walked all the dogs out a couple times. Then had to reset a circuit breaker so I could do laundry.

I think I am developing an ulcer.

Mood swings

Today was mood swing day for Mom. She is normally moody anyway, to put it mildly. Always has been. Never knew what to expect--she made Jekyll and Hyde seem like the sugar plum fairy. Enough of that though--it is in the past. But I went into this knowing that, knowing what we have to deal with, knowing she really is incapable of loving anyone, least of all me. Knowing I would be the scapegoat for any and all emotional breakdowns. I can take it...with the grace of God and the help of my friends and my hubby.  

We just recovered from a two day snit from last week..Wednesday she blew up because I moved her furniture to make it safer and easier for her to get her walker through. By Friday it was as if nothing had happened. Today, she actually got upset because her dog peed on the basement floor, walking in it through it all over the basement,  and I had to clean it up. I didn't get upset or holler. I just took the mop downstairs and said "let's work on getting this little guy housebroken." Next thing I know she is refusing to go to her doctor appointment or get her antibiotic for an infection she has...one that took her to the ER Saturday. She demanded her car keys (she has not driven since she got here over two months ago), so I gave them to her--scary to think she may try to drive around here. I also gave her the application and information for two of the low cost senior apartments in the area. 

In trying to figure out the unfathomable, I realized both blow-ups coincided with a visit from one of the home health staff, but I am not sure if it was a reaction to a loss of independence vis a vis having home health here to do hygiene and stoma care, or if she acts out for the benefit of the nurses. Or both. Either way, I cannot control it, or manage it. All I can do is ignore it, and not react to it.  

Of course she always reverts to passive aggressive communication, coming upstairs after 5 hours of pouting to tell me "sorry I misled you by letting you think this was the place for me," and says I don't care, that she has to move out. Then she ate some ice cream, and sat down in a chair to watch TV. Next the bombshell...completely expected....asking for a couple of old photo albums. Knowing full well she would use them as barbs to ask why she has never been involved in our family activities, I fell on my sword and handed her the girls' wedding scrapbooks. Yup, enjoyed them for 30 minutes, then asked the question for which there is no answer, none she will listen to or understand, that is. "Why was I never invited to these things?  I'm your mother, their grandmother, why am I always excluded?" Yeah, there are so many answers to that question...and none are good answers.  

The reality is all of that is in the past, but my mom has always lived, no thrived, in the past. She is a perpetual victim, the quintessential Eyore. We never have resolved anything, not ever...not in 60 years. And probably never will. And I knew all this coming into this situation. And yet I still willingly signed up for this.  

Maybe I AM the one who is crazy!

Stuff

We collect stuff, all of us. Clothes, shoes, tools, cooking utensils, candles, knick knacks, photos, music, cars, books, movies, paperwork, files, junk mail, vitamins. Some of us are organized with our stuff. Some of us are packrats and save everything, even old ziploc bags and microwave dinner containers from the 1980s. Some of us throw stuff out easily (many times prematurely), with an almost Spartan-like mindset (me and one of my daughters). Others are hoarders, and love being surrounded by more and more stuff.

I feel compelled to write about this because my husband and I are both dealing with different spectrums of the human being's propensity to collect stuff, for two different moms. My mom has very little stuff, but a lot of what she has really is just junk. It is truly sad to realize that her entire life, from 1927 until now, through four marriages and five children, eight grandchildren, and numerous households, fits in one bedroom and a small storage unit. Much of her "stuff" is falling apart or stained or has been repaired multiple times. Other things are irreplaceable treasures and memories--things we made as kids, old photos, her husband's flag from retirement. And her selection of items to have in her room puzzles me--her photo albums are all in storage, but she keeps a framed photo of her dog on her dresser--and that dog is actually living with her. We have offered to hang up personal items, but after nearly three months the only "personal" item on her wall is a calendar.

Then there is Alex's mom...a packrat in the true sense of the word. They are still living in the same house they bought  brand new back in 1977, and the original decor and carpet is still intact. They have amassed quite a collection of flashlights, junk jewelry, clothes, coupons, vitamins, Beall's Outlet shirts, books, and memorabilia. I still remember how shocked I was the first time I visited them back in 1990--I went into the bathroom to use it, and saw over 20 toothbrushes...in at least five different toothbrush holders on the pink formica countertop. All had been opened. There were also at least four containers of hair gel, the blue 'dippity do" from the 1960s. I am fairly sure those are still there. They have three refrigerators and one full size freezer, full of Marie Calendar meals and Klondike bars in every conceivable flavor. Then there are clothes-- despite Connie's concerted efforts to donate  a bag of clothes every week over the past 18 months, at least three of the four full length closets are packed with outfits, many of which still have price tags.  There are sticky notes, newspaper articles from every decade since the 1950s, wallet sized photos of every school picture of her sons and grandkids. Then there are the treasures...letters from Alex's grandparents, an old family Bible, letters Alex's dad wrote while serving on a remote overseas. Since his mom's heart attack nearly two weeks ago, Alex has been filling in as the primary caregiver for them both, and has been overwhelmed with the gargantuan task of clearing out the stuff. He likened it to someone dumping an entire dumpster of garbage in your backyard, and going through the entire pile to find maybe two or three small, surprise treasures out of a ton of crap. It is an understatement to say my darling husband has the patience of Job.

Stuff.  It defines our lives. Sometimes it controls our lives. But most of the time, it is just extra stuff. The most important things in our lives cannot be put in boxes or on shelves or on a CD ROM. The relationships we have with others and with our Lord are the only eternal bits of stuff.

the daily grind...

It isn't the big surprises and shock that wears me down. It is not the sudden calamities. It is the every day, mundane routine. The mind-numbing robotic movements, the ease with which I fall into a rut, a habit, doing all the little things and performing all the simple tasks that I can do without even a thought or a care, moving like an automaton through my day without even a whispered prayer for assistance to my Lord and Savior. The taking for granted-ness of relying on my own resources, my own capabilities.

Cancer, heart attacks, house fires, premature babies, car accidents--those are hard, sure, but like a huge weight falling on my chest, they take my breath away so suddenly I am forced to fall on my knees and look up, up to the hills from where my help comes from. And He is there for me, and my friends in Christ are there with me, lifting me and my needs up to the heavens in prayer and supplication.

But the day-in, day-out grind of preparing meals, making the bed, walking dogs, doing housework and laundry, taking out the trash, cheering up the convalescing, reassuring the lonely, staying connected, being thankful...it is these little boring, unexciting, daily frustrations that can suffocate me with their blandness. Like little bits of sand they get in my eyes, irritate my skin, getting on everything. I try to sweep it up, clean it up, blow it off the furniture, rinse it out of my eyes, and then I realize it is harder to get rid of thousands of grains of sand than it is to move one rock. Unless I rely on the Lord. For with one small breath, He can clear it all away, or shield me and make me stronger.

In all things I must give thanks. In all circumstances I must rely on Him, and look up to the hills. And I must glorify Him in everything I do. For that is my reason for being.

Saturday

Today was my break day...took a much needed mini-vacation this morning. Yes, it also involved taking the trash and recycling to the dump, but that is only because the dump closed early yesterday and I didn't want two bags of trash percolating in the trunk for 48 hours.  

So after walking four dogs twice, feeding them, and cleaning the kitchen, I left to go visit my darling friend and neighbor, Marianna. She made me eggs and toast, and then took me out for coffee and a muffin. And when you give a Nana a muffin, she is going to want some coffee. When you give her some coffee, she is going to want to talk. And when she talks and talks, she is going to get thirsty and want some water.  

Oops, sorry...that is another story! So, I had coffee and a muffin and a wonderful time with my darling friend. We talked about Scripture and Jesus and discernment.  She helped me regroup and refocus. After coffee, we walked across the street to our favorite little resale store, and I visited with my friend, Melissa, shedding a few tears and exchanging hugs. It was a wonderful little break, but it ended when I noticed a voicemail on my phone from Mom. Another leaky ostomy bag, she was sick, and the nurse was on the way to the house.

Break's over. Back to reality.

I spent the rest of the afternoon and evening doing laundry, making a bed, spot-cleaning the living room carpet, making another trip to the dump, comforting my mom, and sitting in the local ER.  

Tomorrow we are getting pedicures. God willing, that is.  

Anything has got to be better than today.  

The cost of love

Gas for five trips to and from Nashville:  $1,055

Meals for those trips:  $700

Pet sitter for trips:  $900

Moving truck (twice):  $385

Medical and accessibility items to modify house:  $2,600

Storage facility:  $500


All of the above being completely taken for granted:  Priceless

Surgery after 80

Mom has had her share of surgeries...in fact, I believe she has spent more days in the hospital, at a doctor's office, enroute to/from a doctor or hospital, or at a pharmacy than she has spent doing anything else. Seriously. Loads of back surgeries. At least three bowel surgeries.  Gall bladder removal.  Polio.  Bunion and cataract removal. Appendectomy. Hysterectomy. Labor and delivery five times. Ileostomy. Varicose vein repair. Countless ER visits for infections, falls, and car accidents. So it came as no surprise when she demanded repair of her abdominal hernia. I agree with her, though...that thing was huge! Grapefruit sized bulge of intestine coming through her abdominal wall. Painful. Causing all kinds of problems with her stoma, not the least of which was a leaking ostomy bag. So, mid November she was admitted for what is NORMALLY outpatient surgery. Wisely, her surgeon admitted her, ostensibly for "a couple of days."  "A couple of days" is medical jargon for "until we finally give up trying to make an 88 year old woman feel like a 28 year old woman."

My first inclination that something was not going to go well was when the pre-op nurse nonchalantly informed us that protocol has changed for bowel surgery. Now, instead of waiting for the bowels to wake up and give a patient solid food, hospitals now give solid food to wake up the bowels. Um, isn't that like giving a cheeseburger to a 6-month old baby? Or a steak to someone in a coma? Well, we were assured there would be no problems. Pre-op at 8 am, surgery at 0900, recovery room from 1000-noon, and by 4 pm, the nurse decided my mom was well enough for meatloaf and mashed potatoes. Never you mind that she was still loopy from general anesthesia, and her ostomy bag was empty. Yep, meatloaf and mashed potatoes.  This is how Mom ended up in the hospital for ten days instead of two. On IV fluids, IV narcotics for pain, and nothing by mouth for 7 days, unable to pee or walk. With a tube down her nose into her stomach to relieve the gas and obstruction caused by a giant lump of meatloaf. All the while the medical staff is haranguing her to walk, to move, to get up...how? She was connected to tubes in four different places!  And, remember, she is arthritic and 88 years old, and needs to use a walker on her GOOD days! 

My sister Mary Beth came to be with her the day of surgery and spent the night at the hospital two nights straight. After she went home, I was at the hospital with her more often than not, and didn't really trust the staff to know what Mom needed, so I was a vigilant patient advocate. Bribed, cajoled, and coddled her to get her to move, to smile, to get out of bed, even bringing in her little dog, Benji, to cheer her up. By the tenth day, I was ready to bust her outta there, so they discharged her. 

Now we begin the long, arduous journey towards convalescing. No more hernia, but she is now re-addicted to oxycodone. Thanks, medical community!

Prelude to Madness

Just a little background before I start posting on this blog...since I didn't think about journaling my new life until today. 

Up until 2011, my relationship with my mom was tenuous at best. She has a lot of issues--medical, emotional, social, and psychological--that make it difficult, to put it mildly, to live with her. I am not sure what is wrong with her, but in a society that wants to label every single disorder, she is antisocial, a sociopath, and has borderline personality disorder (check it out online....). To put it bluntly, she is not a nice person, at all. She is verbally abusive and always has been, She gets surgeries to garner attention, and she lives in an alternate reality. Despite all this, I have spent the majority of my life trying to gain her approval, to make her love me, to get her to be nice to me. It works for a while, but then, BAM! it is gone, and we are back to me being stupid, bossy, bratty, etc. 

She and my dad had an explosive marriage, albeit one which produced five children.  After 15 years of hell, though, they divorced (and they both still harbor ill feelings, no, hatred for each other, even after over half a century). Mom remarried three more times, divorcing the next two and then outliving the last one. While married to her last husband, I tried to be the "good daughter" and help her by having her move to an independent living facility about 10 miles from us in Florida. After two years, we were back to square one and one of my sisters decided to move Mom and her husband up to Nashville with her. Well, not with her, but in an apartment near her. 

Fast forward three years, Mom's husband died (probably got nagged to death), and with him went 80% of her income. She couldn't afford to stay where she was anymore, because her income was at the poverty level. My two sisters who lived less than 20 minutes away from her couldn't be there for her--not in the way it was needed. Mom was a medical mess, having had at least a dozen major surgeries, had limited mobility, and, to make it worse, a permanent ileostomy (part of her intestine is outside her body and she poops into a bag). All of these factors made it imperative for her to move--the three options were (1) an affordable assisted living facility with 24/7 nursing care, (2) a low-cost of living HUD subsidized apartment with home health care contracted through Medicare, and (3) living with one of her daughters. Assisted living facilities with nursing care cost at least $4500 a month more than her total monthly income. And, although we found her an affordable apartment, my sisters convinced Mom she was incapable of living on her own.  Enter option #3--and guess who was the only one willing to do that? Yep....yours truly.

So, in October 2015, after at least five separate trips to Nashville to work things out, get her stuff from storage, move it again, and then bring her things here, we drove out there one last time and moved Mom in with us. In fact, she asked to move in with us.  We set up her room, installed a stairlift and handicap railings, put our furniture in storage in another room, and rearranged our home and our lives.  As can be expected whenever an elderly parent moves in with an adult child, there have been a lot of adjustments. Food choices, bedtimes, schedules, making the house accessible for a walker, and communication. As Mom is practically deaf, that last one is challenging--we have to be facing her and practically hollering at her for her to hear us, and even then she misses probably 40% of what we tell her. Her medical issues are even more challenging, and since she scheduled her life around doctor appointments before, I made sure to set up a new primary care doctor here in Brevard, and get her authorized for home health care, at least until she could get settled into her new routine. Most importantly, we had to ensure we had someone coming in to take care of her hygiene and her ostomy care, as that was something I am not going to tackle. At least not yet.

Then there are the dogs...we have three dogs, dogs we have had since puppyhood, and they have an established pack and routine. Enter Mom with her walker and her dog--an irritating, untrained, pampered toy poodle named Benji. First order of business was to adamantly enforce the "no microwaving of wet dog food" rule...the smell is akin to a dead carcass. Once we got over that hurdle (not after some conflict and more than a little resistance on Mom's part), the next hurdle was to get all four dogs on the same feeding and bathroom schedule. There have been a few accidents, and some growling, but so far the worst part about Benji is his barking...he barks at air. But that we can handle...we just turn up the music.

So, all in all, the first month went fairly smoothly. There were some kinks, and some confrontations, but I was pleasantly surprised with how we were all adapting. I kept waiting for the other shoe to drop. However, medically she was having some issues with a hernia (from her ostomy surgery), and this caused a lot of pain and unpleasant leakage and ostomy accidents, so she elected to have hernia repair in mid-November. That event deserves its own post....

End of Phase I--the Move In Phase