From the Mommy Files…

Posts Tagged ‘elderly parents

Today we celebrate all the amazing dads and granddads, and my dad is no exception.

If you’ve been following my posts about my dad, you know that my dad has Alzheimer’s and now lives in a nursing home. A friend publishes this awesome blog with posts written solely by women, called Women.Who.Write. She published my Mother’s Day essay, and immediately requested one for Father’s Day. Easier said than done.  But this exercise helped me to identify and begin to confront some of the many complex emotions that Alzheimer’s elicits.

Have a read. My Dad: Reflections, Lessons, Love…and Celebration

Thanks Amelia and Women.Who.Write!

Happy Father’s Day!

I'm so blessed to be this man's daughter! Here we are on my wedding day.

I’m so blessed to be this man’s daughter! Here we are on my wedding day.

Hi. It’s been a while!

Let’s get you caught up! So much has happened.

When last we met, we sent my mom back to rehab kicking and screaming.

Her second trip to the hospital in less than 2 months revealed a very severe congestive heart failure.

We almost lost her — again.

With her follow up care too intensive for my dad, we didn’t have a choice.

After a few weeks, the doctors called a meeting.

It was time.

Time to move Mom to a nursing home.

We knew we’d end up down this road.

So at the end of April, Mom moved to her new home.

We were warned that it would be a bumpy ride.

They weren’t kidding.

Enter in two months of transition, with Mom bringing everyone to tears from her abuse.

She was so incredibly mean and hurtful.

She’d say the strangest things, make threats.

The doctor recommended a cognitive evaluation.

We knew she probably had some Parkinson’s-related dementia coming on.

Shortly thereafter, she was officially diagnosed with dementia.

The neuropsychologist said there was definite cognitive impairment.

They prescribed Mom a little something to “take the edge off.”

Soon, she began to calm down and settle in.

Hold on to your hats.

It wasn’t smooth sailing from there.

My siblings and I decided we shouldn’t leave Dad alone.

So we began preparing Dad to move in with us.

He busied himself going through things, learning things my mom had hidden from him over the years.

Dad was busy, so he was happy.

Though in the end, we discovered more than we bargained for.

With Mom settled in the nursing home, it was like Dad was drinking the truth serum.

He began to reveal things we had never known.

He’d call me at random times to tell me he found something that I needed to come and see.

I couldn’t believe some of the stories he would tell.

With Mom “away,” he was able to talk freely, really for the first time ever.

Mom would speak for him, took care of everything.

In her mind, his only function was to work and give her money so she could spend it on things she didn’t need and had no use for.

Dad seemed ok, and then when we’d pack things to take to Goodwill or the trash, he began to ramble on about how he worked all his life, and now we were dumping his life at the Goodwill drop off.

He seemed to get more withdrawn with each drop off.

Then he’d start to freak out if we mentioned Goodwill.

Dad would get very upset when no one wanted something they had.

Mom never took care of things, and really, we’d already divided everything up when they moved from their home years ago and into their apartment.

Besides, we all were set up in our homes and didn’t need what they had.

After a while, we’d just take it to appease him, and then later, dispose of it accordingly.

At the end of June, Dad moved in with us.

On his first night at our house, the girls took their new roommate, aka Papou, for ice cream.

On his first night at our house, the girls took their new roommate, aka Papou, for ice cream.

We were all very excited.

Dad had always been an easygoing, go-with-the-flow kind of guy. We thought it was going to be a relatively easy transition.

Guess again.

We had big plans.

But what do they say about making big plans?

Things didn’t go as we’d planned — or hoped.

This is when we realized we were losing him.

We’d been so focused on Mom, and he’d always been so strong.

No one wanted to admit it, but being with him every day, we saw it.

This man was not my dad.

Certainly not the dad I knew.

She was incontinent – hadn’t been in weeks.

The next morning, she had trouble breathing.

I told her if she continued to have issues, we should see the doctor.

She said she’d see how she felt as the day went on.

Later that day, she said she was fine.

Well, she wasn’t.

She was up all night, and kept Dad up for the next few nights.

She couldn’t breathe, wasn’t feeling well at all, but never said a word.

I asked Mom repeatedly if she felt OK, and she kept saying she was fine.

On her fifth day home, the phone rang.

“Hello. This is ADT Home Health Alert. We’ve received an alert, and an ambulance is on its way.”

Here we go again.

Back to the hospital…where we learned it was a very severe congestive heart failure.

Mom had it before, but not this bad. heartmonitor

Later, the doctor said it was so bad, we almost lost her.

My grandmother used to go to the hospital a lot for this, and would spend a few weeks in the hospital.

But that was 20 years ago, and things have changed.

Now, after 3 days, the hospital was ready to send Mom home, with a very intensive follow up treatment.

Each day, my father would need to:

  • Weigh her and log it: any gain of more than a couple of pounds would indicate she was filling up with fluid
  • Take her blood pressure and log it
  • Check her ankles several times a day for swelling
  • Measure and monitor her fluid intake very precisely: too much would put her over the edge, too little would dehydrate her
  • Provide a very strict diet: absolutely no salt
  • Get her to take her meds—all her meds—at the prescribed time and in the prescribed amount, every single day, no exception

We had been struggling for more than a year to get her to take her meds as directed.

There was no way Dad would be able to handle this.

He’d tell Mom to do something and she’d bark at him and he would give up and not mention it again.

It was just easier to do what she wanted than to try to fight her.

So we elected to send her back to rehab.

If she had the strength, she probably would have kicked my ass.

But there was just no way.

The doctor told us that the CHF would not improve, we only try to keep it from getting worse.

Enter a nephrologist – she hadn’t seen one previously but the CHF put considerable stress on her already stressed kidneys.

Another doctor we’d have to visit.

This doctor concurred with the decision to leave the mass alone.

He would continue to monitor her kidney levels, and we’d need to see him every 2-3 months.

This was becoming truly overwhelming – taking her to all her doctors for follow ups was getting to be a full-time job.

And no one else will take the time, advocate for her, ask the needed questions or do any research.

My children began to see their grandmother as the one who took Mom away.

It seemed like I’d make plans with them—even something like watching a movie—then my mother would have an emergency and I’d have to leave.

They would cry like I just took away their favorite lovey.

I don’t want them to remember their grandmother that way.

The sad truth is, they probably will, because she has never really engaged them or tried to do anything with them.

Anyway, Mom went back to rehab.

We checked her in that night at 9 pm.

Yes, 9 pm!

We started to wonder why this couldn’t wait until morning – there had been a bad snowstorm, and it was so late.

Apparently, they couldn’t wait to get rid of her. She was driving everyone crazy.

Well, it’s what she does best!

It took 1 hour to get home from the rehab center.

It was normally a 15 minute trip.

Before I even got home, Mom called.

“Why did you leave me here? They don’t do nothing for me! Get me out!”

This lament would be repeated over and over.

Mom prefers to be waited on hand and foot, and rehab is not like the hospital.

There are less nurses and aides for more patients.

The calls came every hour.

“I could have gone home. Get me out!”

She got meaner and meaner, but by the next day had settled in.

What she missed the most was not having anyone to be her personal slave.

My dad had taken on that role.

Someone she could yell at any moment to do something—and he would do it, even if it meant foregoing something important for himself, like sleep.

Mom would wake Dad up at night if she couldn’t sleep, which was often.

She’d wake him to help her to the bathroom.

She was capable of going alone but why should Dad sleep if she wasn’t?

I’m not exaggerating.

She’d wake up hungry and bully him until he got up to make her something to eat.

And I’m not talking a sandwich or warming up leftovers.

She’d want a fresh meal—she’d demand it.

And Dad would get up to do it.

Of course, he never said a word to us.

He just did it.

Later, we’d learn that Mom had always treated him so poorly.

Even more so than we had witnessed.

And he did what she wanted, because he loved her so much.

And wanted to make her happy.

It’s been more than 50 years, and he’s still trying to make her happy, but unfortunately, she has never allowed herself to be.

But that’s another story.

When we met last, I began to explain my mom’s first trip to the hospital this year.

Mom had a nasty UTI and was administered some heavy duty antibiotics via IV.

The infectious disease doctor explained that Mom had something called Emphysematous Cystitis.

This is a very severe infection of the bladder.

Mom’s bladder was swelled, filled with air bubbles and in bad shape.

It was the worst case of it he’d ever seen.

And wasn’t responding to the antibiotics.

So he increased the dose, and now prescribed two weeks of this therapy.

A PICC line was inserted in her arm, where the drug could be administered.

The infectious disease doctor inquired about whether or not I had spoken to the urologist.

I had not.

I had been trying to reach him.

He suggested I try harder.

There was more to this story.Hazard-01

I asked the nurse to tell me what was going on, since I kept missing the urologist when he visited Mom, and couldn’t get a phone call back.

Apparently, the CT scan and subsequent renal ultrasound unveiled another issue.

Mom had a large mass on her kidney.

With several counts in her blood work low, and the extreme weight loss, this was considered a possible Renal Cell Carcinoma.

HELLO!

And since Mom is in such poor health, she isn’t a good candidate for surgery.

She told me to speak to the urologist, but said that it might be something to just leave alone, considering she is 83 and in such poor health.

I didn’t expect that one!

Later, we’d learn that her bladder was so severely infected that there was actually discussion of removing it.

The urologist insisted that bladders bounce back pretty well, it would just take time, so he advocated for the heavier dose of antibiotics, and to see how things went.

Now, about that mass…

There were actually two – one about 3 cm, the other smaller. The 3 cm one was of concern.

With Mom’s age and health status, surgery wasn’t an option.

Normally, they’d open you up and cut it out, as it were.

If she wished to remove it, due to its location and size, it could be removed via a type of cryosurgery – it would be frozen off, via a very long needle “inside of a needle” kind of thing.

It would be very painful, but the mass would be removed.

Then there would be follow up to be sure the whole thing was removed.

He said it was too big to leave alone.

But, Medicare won’t cover this procedure unless a biopsy is performed first.

This biopsy would be performed with local anesthetic only, and involved another large needle.

We should think about it, and then make a decision.

He said we had to get the bladder infection cleared up first before we did anything.

Oh! One more thing!

He wanted to do a procedure on Mom called a cystoscopy.

He would insert a scope to look into her urinary tract to see if there was anything going on in there that would cause these frequent and recurrent infections.

The infection absolutely had to be cleared up, and no new UTI present, as if there were and the test was performed, it could cause damage.

Well, Mom was overwhelmed, and so we couldn’t even discuss this for a few weeks.

Mom did decide she didn’t want to be poked and prodded, and elected to leave the mass alone.

The urologist agreed to respect her wishes, but requested a follow up CT in 3 months to check for any growth.

After one week in the hospital, the infection began to respond to antibiotics.

It was time to move on to rehab.

But we couldn’t find a local rehab center that had an open bed!

Busy! Busy!

So Mom stayed a couple of extra days in the hospital while they sought a vacancy at a rehab facility.

We moved to a rehab center two days later, where Mom would receive IV antibiotics through the PICC line for another week.

There, they decided they could give her some rehab to help her rebuild her strength.

Or course, Mom was not happy with this, and fought it the entire way.

Ultimately, she stayed 6 weeks.

By the third week of rehab, she was pretty spry and practically racing down the hallway.

She looked good, moved well.

This is what happens when you take your meds on time and as directed, and get regular exercise!

These are things that didn’t happen at home.

So we began to discuss whether or not it was really time for permanent placement.

Because we knew, once she went home, she’d retreat to her chair, and within a week, we’d be back to where we started before she went into the hospital.

Dad said he would give it another try, so after 6 weeks, we took Mom home.

Already that night she began to have issues.

The roller coaster took an unexpected turn.

 

Did you ever have one of those days – or weeks or even years – when you said to yourself, “I didn’t sign up for this crap!”

I think I’m the poster child!

Life seems to get more complicated by the day.

Can we start 2014 again?

I seem to have lost half a year!

Let me explain…

I started the year all fired up… hospital sign

I had a meeting with my editor to jump start the rewrite on my molar pregnancy book.

I had set some goals.

I was going to make things happen.

It was going to be my year.

Then reality set in.

My 5 year-old, who’d spent 3 days in the hospital in November for Encopresis, had begun seeing a psychologist to help her get over her refusal/fear/aversion to poop.

These sessions resulted in hours more work for me.

Driving an hour to the appointment, an hour there, an hour back.

Then there was the charts, and then coaching and cheering, and sourcing prizes and incentives.

I realized I was spending about 3 hours a day on this.

And I didn’t have 3 hours to spare.

I never thought I’d cheer for poop, sit so long in a bathroom trying to coax a poop out of my child.

It seemed we’d take one step forward, then five back.

Then I got a sinus infection.

My immune system has never been the same since chemo, and when I get sick, it knocks me on my rear, and for a long time.

There were days I could barely get out of bed.

To put breakfast on the table, make lunches and pack backpacks was a difficult thing.

My husband had to take the girls to school and pick them up – every day.

After three weeks, I went to the doctor. He decided it was something bacterial, and put me on pneumonia watch. Yikes.

Two different kinds of meds, and those ribs that I fractured a couple of years ago when I had a bad, enduring cough during chemo?

Those were sore again from the coughing.

It took about a month for me to recover.

Now you may know that my mother has had a lot of health issues, and we have been dealing with her refusing to take her meds, her growing meanness to my dad (the only reason she was not in a nursing home was because he put all his energies into caring for her, and waiting on her hand and foot, though it was never enough for her)

In the beginning of February, Mom was not feeling well.

We wondered if this was her way of bringing attention back to her (she’s done this before) following the death of my dad’s brother’s wife (my dad began calling Greece day and night, fearing his brother would soon follow his wife), and the issues with my little one.

I got a call from the nurse at her doctor’s office.

Mom had gone to see her.

I had no idea.

She had a UTI, and they were going to prescribe antibiotics.

I spoke to Mom, she said she didn’t go to the doctor because she thought she had a UTI, she just wanted to go.

OK, well, at least we found this infection.

She is a frequent flyer on the UTIs.

My guess was always poor hygiene, and a growing laziness to even get up out of her chair to use the bathroom.

Mom was always a difficult sort, and seemed to be her own worst enemy.

A few days into the antibiotic, she seemed to grow weaker.

My aunt—Mom’s sister—is a nurse, and lives a few minutes away from my parents.

She went to check on Mom and decided we should press the emergency alert button and summon an ambulance.

Mom couldn’t get up out of the chair.

She didn’t think she could make it to the door.

My mom seemed out of it.

When I got to the hospital, they were still running tests, working her up.

Finally, they told us her UTI had not responded to antibiotics.

Mom is allergic to many antibiotics and has grown resistant to others (since she takes them so much).

Her bladder was severely infected.

She’d have to be admitted, for some heavy duty antibiotics to be administered via IV.

We gathered her things to go up to her room.

As we got Mom out of bed, I noticed something I hadn’t noticed before.

Mom had lost a ton of weight.

Now we thought she’d lost a little; we could tell in her face.

Mom was well over 200 lbs, and she’s only 5’3”.

She could stand to lose some weight, but wow, she had lost quite a bit.

Once in the room, the nurse brought in a scale.

Mom was 157 lbs.

Not two months earlier, she tipped the scales at 215.

What was going on?

She never got out of her chair, and never changed out of her huge nightgowns, so how would we know?

Mom was almost lifeless.

She was incredibly weak, and they started her IV antibiotics.

The next day, they told us the antibiotics weren’t working.

There was no change.

They’d have to increase the dose and the duration.

Hopefully that would do the trick.

In the meantime, she begged and pleaded with Dad not to leave her alone.

She was scared, thought she was dying.

Dad never left her room that week.

A psychologist took us out in the hall to speak to us briefly, and Mom freaked out.

Dad barely ate.

I took him home a couple of times to shower and change, and he wanted to go right back.

Mom expressed to him that she was afraid she’d die, and didn’t want to die alone.

And then of course she threatened that if she were to die alone, she’d haunt him forever.

So what’s a man to do?

So here we are, mid-February:

I’m not 100% well yet.

I’m dragging the Bebs to the psychologist, being a “poopy” cheerleader.

Boo is feeling a bit neglected, acts up. Rare for her.

Then one night, while sitting on the toilet, between poop cheers, Bebs blurts out,

“Is YiaYia going to die?”

I guess I hadn’t thought much about it to that point.

“Will you lose your Mommy?” Boo asked.

Honestly, I lost my mommy a long time ago…but that’s another story for another time.

I guess it was really possible that her body was finally giving up.

The phone rang.

It was the urologist who I’d been chasing for days to get more info on her test results.

 The news was worse than I anticipated.

 


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