From the Mommy Files…

Archive for the ‘talking to kids about illness’ Category

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.

Advertisements

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.

So where did we leave off before I got consumed by moving?

That’s a whole other story.

Oh yes.

STROKE ALERT!

A quick trip to the CT room and back, revealed there was no stroke.

Thank God.

But…

Yes, there was a “but.”

Something on the scan didn’t look right, so the doctor ordered a series of MRIs and MRAs.

The doctor gave no clue as to what he was looking for nor did he share any of his suspicions.

I didn’t even know how many tests I was about to receive until later.

Meanwhile, the vertigo was still an issue, especially with all the tests.

Another doctor came in and told me in order for him to figure out what this vertigo was, he had to do a test that would probably make it worse.

He raised me up quickly and turned my head really fast.

Holy cow!

Talk about speeding up the spin!

“A typical case of Benign Paroxysmal Positional Vertigo.”

Say that 10 times fast.

“Or BPPV for short.”

Apparently, we have crystals in our ears that regulate our balance.

When one comes out of place, it creates the vertigo.

The doctor explained that this was treatable.

He said there was a therapy I could do to gently move the crystals back into place, and then it should go away.

OK! So set me up!

Not so fast.

“We have to get the results from your other tests first.”

Meanwhile, Peter left to be at home when the girls woke up.

It would be several hours before I got any answers—or any relief for that matter.

I was given a pill and an injection to help stop the vertigo.

They helped, but didn’t relieve it 100%.

The ER began to fill up – there was a flu epidemic and people were flocking to the emergency rooms.

Eventually, this ER would be shut down.

I had been in the ER for more than 12 hours before I received more information.

Vertebral Artery Dissection.

What’s a vertebral artery?

The explanation I recall from the ER is not 100% correct, so I’m not sure if I didn’t hear it right or it wasn’t explained well.

We have two vertebral arteries—one on the left side of the neck, the other on the right. They are major arteries of the neck.

The one on my left side was torn.

Wait—there’s more.

I was told there was an aneurysm blocking the entry point.

VAD happens typically when there is an injury, or in many cases, a chiropractic adjustment gone bad.

I had neither.

The doctor asked me think back to what has been going on in my life.

We discussed the molar pregnancy, the chemo, the neurological issues I have had since.

It could all be related. They just weren’t sure yet.

This is a rare malady.

And for now, they would pronounce the cause as “spontaneous,” though we would revisit this again later.

So tell me, how did I get two “rare maladies” in a little more than two years?

Lightning struck me twice!

Then came more news.

I was going to stay in the hospital.

And my children?

The nurse said, “Let your husband take care of it. You can’t stress yourself out.”

Well, stress is part of this game we call Motherhood, no?

NOW WHAT?!

A chest x-ray, a discussion about therapies, and a four-hour wait in the hallway for a room.

Yes, you read correctly.

The ER was so jammed, I was moved from my room and had to wait in the hallway of the ER until I could get the x-ray and a room became available.

I was offered the choice of several drug therapies—all involving blood thinners with varying side effects, as well as follow up methods.

I chose Xarelto, which was a relatively new blood thinner, since I wouldn’t need weekly blood work, and my diet would not be restricted.

Then came the rules for this game.

“There are several things you will no longer be able to do, and some for now, let’s put on hold,” the neurologist explained.

“You have to take it easy, and no stress. You need to heal.”

I told him I was a mother, and that was an impossible task.

“Well, you have to try,” he insisted.

Then came the litany of activity restrictions:

No running, no jumping.

No prolonged movements of the neck.

“You know when you go to the hair salon and they put your head in the shampoo bowl?” the doctor asked.

“Don’t do that. It can give you a stroke.”

WHAT?!!!

“No quick movements of the head either. Use extra care when you drive.”

There was more.

“No neck massages, no yoga.”

How was I supposed to relax?

“No aerobic activity. Walk on the treadmill, but at a slow pace and only for a short time. Listen to your body. If you get dizzy doing anything, stop.”

“Take your meds once a day with dinner. Do not forget or you will be an increased risk of stroke.”

I asked how likely it was that I could have a stroke.

The doctor said it was VERY likely if I didn’t follow the rules, and somewhat likely even if I did.

He told me that I was lucky.

Lucky? How do you think this is lucky?

It seems that most people do not know they have VAD until they have a stroke.

If you hear of people under 50 having a stroke—this is most likely why.

So I was a walking time bomb.

“Oh yes,” the doctor said. “You might want to not play with the kids. No horsing around whatsoever. Do not lift them. Do not lift anything heavier than 10 lbs.”

“Are you kidding me?” I asked.

“I wish I were,” he replied.

17 hours after I arrived at the ER, I was finally on my way to a room.

Somebody wake me up from this nightmare.

This cannot be happening!

————————————————————————————————————————

Check back soon to learn what happened next.

 

 

 

That night, I woke up and rolled over to the right. I got dizzy. Hmmm. I hadn’t consumed any alcohol that night.

I settled back down and in a few moments the dizziness stopped. I drifted back asleep.

Sometime later I woke up and rolled over to the left. The room began to spin uncontrollably. What was happening?

No alcohol, I didn’t have a migraine, I ate…what was going on?

It wouldn’t stop. I tried to settle myself, but to no avail. I got scared and let out a scream.

“Oh my God! What’s happening?”

My husband ran up the stairs so fast, it’s amazing he didn’t fall and break a leg.

I explained the situation. The room wouldn’t stop spinning.

“HELP!”

Finally, after a few moments, sitting up, the spinning stopped. It was the weirdest thing I had ever experienced.

You know the head spins after a night of consuming too much alcohol…this was worse.

It was January. Almost one week into the New Year. This had happened to me once before, in August 2012.

My cousin came over.

We drank a bottle of wine, ordered some take out, and talked until the wee hours.

The next morning, I felt hung over. OK.

A while later, I got up from the couch and the room was spinning uncontrollably.

I’d sit back down, and feet on the floor, it would finally stop. This went on the entire day.

Every time I got up it was worse. I got sick.

I crawled around, because standing up made the room spin and started the chain of events again.

I was either on the couch or in the bathroom.

The girls stayed with me on the couch all day. They watched cartoons while I tried to sleep it off.

Just when I thought it was getting better, it got worse.

I was so sick, we decided that I probably had some kind of food poisoning. I couldn’t function.

By the next morning, I was fine.

I never thought twice about it because it didn’t happen again—until that January night.

Except, there was no alcohol involved this time. Hmmm…

So hubs ran up the stairs in record time and I explained the situation. He got me a drink of water.

As I sat there, various parts of my left side began to tingle and then go numb—one after another.

This was not normal.

My husband called and had my doctor paged. He immediately called back with a dire tone:


“GET HER TO THE HOSPITAL NOW! SHE COULD BE HAVING A STROKE!”

A what? Get out! I’m in my early 40s. People my age don’t have strokes.

Well, some do, but lightning already struck me once with a rare malady. What in the world?!

It was after midnight.

I didn’t want to wake the girls and drag them to the ER in the middle of the night, to stay for an untold amount of time.

We called our next door neighbors, who graciously came over right away so we could go to the hospital.

If it was indeed a stroke, there was only so much time to spare before there would be permanent damage.

This was all happening so fast and all I could think about was my kids waking up and wondering where I was.

I didn’t even think about the ratty old, stained t-shirt I was wearing—one kept more for nostalgia than looks.

So in that 25 year old t-shirt that really belonged in the garbage, and my pajama pants, I put on sneakers (yes, believe it or not, I left the house in sneakers!) and my husband and I set off for the hospital.

What was happening to me?

I was still dizzy on and off, and at varying degrees.

It was kinda like being outside yourself.

Who was this person and what was happening?

Why was I on my way to the hospital?

Why did I have something else going on?

What if I did have a stroke?

Who would care for my kids?

It was hard enough to find someone to watch my kids when I was going through chemo.

What would we do if I needed extensive rehab?

What?
What?
What?
Why?
Why?
Why?

At the ER, they were expecting me. The doctor called ahead.

I was quickly put in a wheel chair and taken to triage.

Then came the announcement:

“STROKE ALERT!”

It didn’t seem possible that the alert was for me.

Me, in my early 40s? Isn’t this something that happened to old people?

—-
Unfortunately this is not the opening of a novel or a short story. This is my real life story–the story about why I haven’t been around, why you haven’t heard much from me this year. Check back soon to read more.

How much do you tell your children? Do you tend to explain things in great detail or keep things simple?

When there is a loss or an illness in the family, what do you do? Do you try to pretend everything is normal or do you tell them?

These are tough questions.


Much depends on the age, maturity and temperament of your child.

Back in June, my uncle was very ill and subsequently passed away. We took the girls to see him a couple of times at the hospital. When he passed, we told them that Uncle went to Heaven and wouldn’t be sick anymore.

Boo had questions:

How do you get to Heaven? I told her the angels come to take you.

Are you still sick when you get to Heaven? I told her that in Heaven you are never sick again.

These simple explanations seemed to satisfy her curiosity.

Recently, tragedy has struck right here in our home.

Everything happened so fast, and honestly, I’m still struggling with how much to tell the girls.


Bebs is easy – she’s so busy with all her new discoveries to ask questions. Besides, she’s 19 months old.

Boo, on the other hand, at 3.75 years old, is very inquisitive, and she’s a very perceptive, yet sensitive child.

There are many resources available on the subject. One article has some good tips on speaking to children about illnesses.

They suggest:

Keep things simple.

Explain that these things are not contagious.

Let them help you.


They also have a handy chart broken down by age, on how to explain things, and what kids can process.

It’s pretty straightforward, though I don’t think I can do it. I don’t know what my own response will be to talking about it, and I know Boo will come up with questions that I don’t want to answer. I don’t want to scare her.


I go back and forth. To tell or not to tell?


Boo has had a rough few weeks with everything that transpired. She cried at school and said she missed her mommy. At home, she cries for every little thing and sobs uncontrollably – over nothing. She asks me repeatedly if I’m OK.

I was pregnant.

I hadn’t told the girls yet. I’m glad I waited. It makes this simpler.

I wanted to wait because I knew Boo would tell everyone.

We told some family members and a few close friends.

I decided after my 8-week prenatal visit, I’d share the news. I’d have an ultrasound picture in hand to show the girls. I couldn’t wait to tell them. I was very excited to be expecting again, and I knew they would be too.

I was feeling really good – a bit tired, an occasional bout of nausea to remind me I was pregnant.

My cousin came to watch the girls, and I was off.

I went to my doctor appointment, and my world was shattered.

You hear people speak about life-altering experiences. You’re changed forever. This was it.


We lost the baby.


Not only did we lose the baby, but there were concerns for my health.

WHAT?


I had to return the next day to have another ultrasound.

I went home and was like a zombie. The girls were happy to see me, but knew something was wrong. I tried to shrug it off. It was time to eat, then baths and bedtime. I got them settled and just kind of sat in a stunned silence.

The next day, Boo went to school and Bebs to the babysitter – where she got stuck an extra three hours – as the tornado came to consume me.

The results were confirmed. I had to see the doctor, then a specialist. It all happened so fast. Questions. Questions. More questions. I was shell-shocked.

A chest x-ray to be sure nothing got into my lungs (huh?), a blood draw so they could cross-match blood in the event of a hemorrhage (are you kidding me?) and the next thing I knew I was having surgery first thing the next morning.

I could barely get the words out to tell my husband.

How would I explain this to my kids?


I told them I was sick, but the doctor was going to make me better.

When they were asleep, I cried my eyes out. How in the world could this happen?

My aunt came to stay with them. I tried really hard that morning to act like I was just going to a meeting.

She drove me to the hospital and picked me up, with the girls in tow. I think these trips to the hospital scared Boo. Perhaps it reminded her of going to see Uncle at the hospital. I don’t think she knew what to expect.

Surgery went well and I was home by 2:30 pm.

Boo continues to ask if I’m OK, and she’s had theses total breakdowns – like major tantrums. I haven’t seen her like this in a long time.

After a fit the other day over not wanting to sit in her chair to eat, we sent her to her room to calm down. She carried on for at least 20 more minutes.

It was time to talk to her.


To tell or not to tell?


I said a quick prayer and climbed the stairs to her room.

I sat on her bed, and hugged her. She began to calm down.

I asked her what was wrong. She kept saying she didn’t know.

Then I asked if she was scared. She said, “You left me alone.”

“When did I leave you alone?”


“You went to the doctor a lot and left me alone. I don’t want to be alone. Then you left me alone here in my room,” she replied.

“Mommy had a problem, Honey. And you weren’t alone.”


“Did the doctor take the bad stuff out of your belly?” she asked.

I didn’t remember telling her that, but I went with it.

“It’s all gone, Sweetie. Everything’s OK.”


“Will you be sick again?”

I don’t think so. But I have to rest a lot, so I’m OK.”


“OK. Do you still have to go to the doctor?”

“I have to go a few more times, so she can make sure that I stay OK.”


“You should go only while I’m in school.”

“OK.”


I decided against telling her about the baby. It would be too confusing. There would be too many questions.

Someday I’ll tell her about her angel sibling. Not now.


We’ve had more episodes. Another time she told me again that she didn’t want to be left alone. She was scared. I told her she’s not alone, ever. We’re a team and we stick together. And we take care of each other. That seemed to put her mind at ease, at least for the moment.

As I seek out information and support groups online, tears sometimes come to my eyes. I try hard not to let her see me.

I have to work through my grief, but unfortunately, I have to do it after hours, when she’s not around. It’s not worth upsetting her further.

Some may not agree with my approach, but knowing Boo, I think it is better this way.

But somehow, I still question myself…

To tell or not to tell?


How much is too much information?


How do I keep my emotions in check, when this is bigger than all of us?


FAITH.


That’s the only answer I can come up with.

So I will just hold tight to my faith.

We’re all going to be OK.


Enter your email address to subscribe to this blog and receive notifications of new posts by email.

Join 51 other followers

BooBoo BeDoux

Bebs LaRoux

frthemommyfiles

Latest Tweets

Content is registered and protected.

MyFreeCopyright.com Registered & Protected