Tag Archives: Afib

Its Not About Me And Yet…

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Mom just fixed her breakfast.  She has been fixing her own breakfast for about a week now.  She brought her laundry out to the mud room yesterday — rolled it on her walker.  I was already in that room, so I loaded the washer for her and later transferred it over to the dryer.  Once it was done, I took it to Mom, and she folded it.   This is good progress.  For months, she has not had the health or energy to do any of these things.  We ran a few errands earlier this week, and Mom seemed to enjoy that day.  She got in and out of the car several times and did fine.  She bought some new clothes at a local shop — much needed items as her own clothing hangs on her now 60-pounds-less frail body.

All that progress, but still, I sit here looking up Movers and Self-storage Units.   She wants to go back to her apartment.  She loves that apartment.  It is sad.  Heartbreaking.  Melancholy: a gloomy state of mind.  Sigh

Even since our “family meeting” on Sunday, where we talked very frankly to Mom about her physical and mental health and explained why she cannot go back to her apartment, she tells everyone she is going home next week.  And seriously, I do not believe she is being stubborn; I think she does not remember most of that Sunday conversation, and in her mind, she intends to go home.

And that is why she cannot.

She is still too confused to live alone.

Her physical body is healing and gaining strength.  Her clarity has improved dramatically over the last 3 weeks, but her mental state seems to have stabilized about a week ago.    She is almost “there” but not quite.   We cannot, in good conscience, allow her to go back to an apartment building to live alone.  Would she forget to turn off the stove?  She never has.  But what if?

My Mom is in a hard place.  She has had so much taken away from her in a short period of time.   Even though she just celebrated her 84th birthday, and by anyone’s standards, that is an old age, she was on the golf course 9 months ago.  She took a road trip with a friend out West just a couple of years ago.  This is not the average 84 year old woman.

I have been a little uptight and anxious the last few weeks.   I have been too quick to complain and see the negative.   Her half well/half sick state challenges me on many levels.  Shame on me.  I can do this better.  I will never have another chance to do this.  I want to do it right.

This is my Mom’s story.  It’s not about me, but yet, do I have some control on how we all walk down this road?  My attitude and mental state affect not only me, but they affect my Mom and my children and grandchildren.   It IS my story in that sense.   How do I want to do this?  Who do I want to be in this?  When I look back…

Lord, I need discernment, wisdom, kindness and strength.  Help me to do this better.   I want no regrets.  Help me to do this right.

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Sometimes There Is No Air

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Graves Disease.  Hyperthyroidism.  Both very treatable.  Both easily identifiable.  Both missed.  Wow.  My mother has been sick for months, really really sick, like the close-to-death kind of sick.  And the whole time, it was something that they missed.  I don’t even know what to say.  How does that happen?   And the doctors are shocked as well.  They are being open and honest with us, saying things like, ‘we missed it’, ‘checking thyroid is standard procedure’, ‘I feel like an idiot’.  Yes, a doctor actually said that.   This was all avoidable.  Her thyroid numbers were off as far back as May 2013, and no one followed through with that report.  14 months.  Wow.

So the good news is, Mom is going to get better.  She is already so much better.  That is wonderful and we feel blessed.  We sincerely thought we’d be burying her before summer’s end.  All signs point to another chance.  She has been given more time.

The bad news is she won’t be content here.  We’ve been through this before.  Every time her health improves.  Same story.  And I don’t blame her.  She had an active life she loved.  She wants her life back.  And who knows, maybe she’ll get it back… time will tell.

I called my sibs together today for another family meeting.  Mom was so sick 6 weeks ago when we met, she doesn’t even recall that conversation or any of the decisions made during the meeting.  Her lease is up at the end of the month.  We need to move ahead packing and storing, and I need some reinforcements before I forge ahead.  Even though Mom seems to be on the path to recovery, she will not be able to live alone for months.  She has already paid five months rent for an apartment that no one is living in.  The lease is up, the apartment has to go.

We talked in circles — the dementia rearing its ugly head — but she did, in the end, agree about the apartment.  I will get supplies and begin packing evenings this week.  I wonder how much of the conversation she’ll remember, and how much of it will be twisted and repeated incorrectly.   She has already had one phone call from a friend — 10 minutes after everyone left — and many details were skewed already.  It is sad.

And so I’m struggling right now.  Feeling sorry for myself.  My sibs have left — all to their different Sunday evening activities, and I’m here at home — with Mom.  Even my husband and daughter flew the coop.  (After the tense afternoon meeting, my husband decided it was a good time to power wash the house — anything to get outside).

Mom is mobile, and we can get out.  But frankly, we’re kind of tired of each other.  We’re both well-mannered enough to remain cool, calm and collected.   We’re both kind and considerate to each other.  But I want out of the house to do something else.  And so does she.

I did go out to eat with my husband earlier today, well, my husband…. and my mom.  My mother is always here.  Around every corner.   And I know some day, I will not be able to say that.  She will be gone.  Guilt.  But it’s like a new mother with that toddler.  She loves him more than life itself, but he is always there.  No escape.  The days are long and monotonous.  I’m sure that is exactly how my mom feels too.  I am always here.  She never has any privacy.  She never has a minute to herself.  We just need air.  Sometimes there is no air.

We are buggy.

We need a break.

I am reading a book on listing good things.  Remembering and counting.  Practice.  Practice thankfulness.

I am thankful for the time I’ve had with my mother.  I am thankful for the lessons being learned as I care for her.  I’m thankful for the relationship she has developed with my grandchildren, and the fact that they will remember GG.  I’m thankful for a husband who has been kind and generous to his mother-in-law.  I’m thankful for Mom’s second chance at life.  I am thankful for the health, strength and time I have to invest in my mother.

I am feeling a little blue,  sorry for me, but I know God is faithful.  I know He is good.  And He is working all this out to His glory.

Today is just a bump in the road on this journey with my mom.

Tomorrow we will be fine.

It’s all good, and we will be okay.

Everyone has moments, or days, when they just feel overwhelmed with what’s on their plate, right?  Practice. Practice.

its all good

 

 

 

 

 

If She Passes “the Test”, Does She Get To Call the Shots?

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Mom is holding her own.  It is rather incredible, and we are happy that she appears to be doing better.   We had another big weekend with lots of family.  She participated in the outing and it was fun to see her interact with many of the great-grandchildren.

There are a couple of concerns:  she continues to lose weight, and has dropped 9 pounds since she came home from the hospital 12 days ago.  Due to the congestive heart failure, I have all the instructions on what to do if she gains weight:  No more than 2 pounds in a day; no more than 5 pounds in a week.  But what do I do about her losing weight?  Her appetite is good — she eats 3 meals a day plus a small snack in between each meal.  She is always excited about a dish of ice cream after supper;  cookies in the middle of the night (some habits die hard, I guess).   We have gone through her supply of Ensure — guess I’ll restock that cupboard.

The other concern is her desire to go home.  Here we go again.  She tells everyone that she is going home in a few days.   Besides myself, three other family members have told her that she is not going home.  Her apartment lease is up this month.  We have made plans to pack and store.  Her lease has not been renewed.  I have already canceled some of her utilities.  Sigh

She has stated three times today, ‘do not let anyone take anything out of my apartment’.  And three times she has asked me, ‘what would they do with all my stuff?’,  if they did.  And yes, three times I have told her, ‘pack and store’.  So there is that.  The repeating.  So in circles we go.  Round and round.  Over and over.

This. is. exhausting.

Can I just be honest?  She is much easier to take care of when she is really sick.  That sounds harsh, and I don’t mean to say I want her to be sick.  I don’t.   I just mean to say this is challenging.  This half-sick/half-well is really hard.

Taking care of an aging parent is more difficult than I expected.  There are layers of crisis.  Just when we think we have a plan, the situation turns another direction.  Two weeks ago, we sincerely thought Mom was on her death bed, and now, here we are fighting about her returning home again.  What a roller coaster ride.

It. is. just. plain. hard.

I have talked with my sisters briefly today, and they know we might have a “situation” on our hands.  I suggested that we have Mom evaluated by a Neuropsychologist.   That was actually our plan a few weeks back — before she ended up staying over 20 days in two different hospitals.  The main reason she couldn’t go home was due to the dementia.  But hey, she is pretty darn lucid these days.  And we are concerned about her allergies, and how they tend be extremely irritated in that apartment.  But, if she passes THE test, then I guess she is an adult, and she gets to call the shots.  (There will be no complaining about the watery eyes, headaches or numerous sneezes.  Well, at least, there will not be a lot of sympathy extended).

I have raised 4 daughters, and yes, there were challenges.  There are still challenges.  However, this taking care of a parent tests me in different ways.  This changing of roles.  Every day, we are jockeying for our positions.  I never know if I will have a passive opponent or an active, dominant one.  And when my mother is my mother, she is dominant (that is a nice way of saying she is stubborn).

I guess I’ll call the apartment complex in the morning.  Hopefully, they haven’t leased her apartment to a new renter.  If that is the case, I may be in big big trouble.

But, you know, I’m just thinking out loud here.  I don’t really know what will happen.  I don’t know what I’ll do.   We will most likely have another family meeting.  I will probably not call the apartment.

This may get ugly before it gets done.   There is a vocal, sick parent, 4 siblings and several very involved in-laws trying to make the best decisions.  Anxiety on steroids.  Oh Lord, help us…. again.

clock-drawing-test-dementia

 

 

 

Doctor’s words: I think We Missed Something

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The doctor’s office didn’t call back that day.  Sigh.  When they did return my call, I was standing in line at the grocery store, and just allowed their message to go to voicemail.  Who wants to talk about intimate details of your mother’s health amongst tabloid magazines and inquisitive strangers?

When I got back to my car and listened to the message, the nurse had apologized for not getting back to me sooner.  It has been 36 hours since I called and it is now 6:15 p.m.  The doctors office is closed.   ‘I’m sorry, your message got lost in the shuffle.   I see she has an appointment for tomorrow, but  if your mother worsens during the night, you can always take her to the ER.’     Seriously?  The ER?  Again?  That is exactly what I was trying to avoid.  No.  Mom is having trouble, but she is stable.

I will wait until the appointment.

I pray we can wait for the appointment.

The doctor is rather shocked at Mom’s condition.  At one point during the appointment, he looks at me and quietly asks, ‘are you sure you can take care of her at home?’

He actually says, I think we’ve missed something.  Her physical state does not match her clinical report.  Something is wrong.

Ah, yes.  Something is wrong.  That is what we have been saying for months.  Finally.  He gets it.  This isn’t just Afib or congestive heart failure.  This isn’t just dementia.   There is something else they have missed.   Her rapid downward spiral is happening right before our eyes.  Before his eyes.

He changes her meds again.   We schedule an appointment with the cardiologist for his “next available”, and we head home.   I am disappointed.  I don’t know what I expected him to do for her.   Mom is weak and frail and so sick.  I help her into her chair and make her comfortable.

The ‘next available’ seems like a long way off.

puzzle-pieces

 

 

Could Someone Please Just Help

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Mom came home from the hospital on Friday evening.  She has been through so much in the last couple of weeks, and she looks it.  Frail and weak, and just plain miserable.  Two hospitals, multiple tests, xrays, scans, a laparoscopic surgery, 8 doctors, and too many nurses/techs to count have left her in no better shape than when I took her to the ER two weeks ago.  She may be in worse shape.  Hindsight is 20/20, and I wish they had never transferred her to the big city hospital.

After pursing a non-existent cancer for a week,  the hospital was ready to release her last Wednesday.  My sister tracked down the doctors and insisted that they call in a cardiologist.  Hello?  Um, yes, she has Afib and a congestive heart failure illness.  Why wasn’t a cardio guy called in from the get-go?  After two more days of testing, the doctors have now said the diagnosis is Pulmonary Arterial Hypertension.    And yes, that is a grave diagnosis, and we will need to get educated on it, and possibly identify the “event” that caused this illness.  But it is so frustrating that we have come full circle, and after two excruciating weeks, they say, “it’s the heart and lungs”.   Yes.  We know.  We’ve been dealing with the heart and lungs since December.  Sigh.

And I’ll take this moment to say, yes, I know I have been “all over the map” on Mom’s illness and diagnosis, however, that is kind of where we have been — the doctors are puzzled, and they are searching for answers.  And since this blog is about the journey, and specifically, my perception of the journey, we are bound to travel down roads and then turn around again to backtrack.  It’s a daily trek.   I hope you stay with me.

Mom can’t grasp the severity of her condition.  And that is ok.  The dementia may be a blessing.  I don’t care if she never understands that her health is so fragile.  We will just take it one day at a time.  She wants to feel better today.  So we will hope for a better day today, and then tomorrow, we will hope for a better day.  We will just continue to hope each day.  Because that is what is important to her.  She can’t think beyond the immediate discomfort.

That said, today, here and now, she is very uncomfortable.  And that is what I need to fix.  Between the incisions (from the surgery that wasn’t even necessary where they removed her ovaries and fallopian tubes), and the rash on her tummy from the adhesive tape, the sore tail bone from her position in bed for two weeks,  and the STILL present water retention, she is fidgety and extremely uncomfortable.  She asks for pain meds several times during the day here whereas she wouldn’t even take them while hospitalized.  I try to make her comfortable.  I’ve applied creams and ointments and helped her with a much-needed shower, and still she is miserable.   It is hard.   And it is sad.

I am waiting for the doctor’s office to open this morning.  The “Hospitalist” sent her home on a fraction of the water pill that she has been on over the last several months.  I was concerned about that dosage and called the hospital twice over the weekend to ask if there had been an error in the discharge papers.  No one could really answer that question.  Seriously?   Last night when I helped Mom get ready for bed, I saw that her legs were swollen.  They look better this morning, but still, we may be spending some time in the waiting room again today.

Help.  Someone,  please, just help.

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That Would Be Terminal For You

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The good news is the CT scan was normal.  The bad news is Mom is back in the hospital.  I just want to cry.  I tried so hard to avoid her going back in, but some things are just out of my control.  It isn’t her heart or her congestive heart failure.  Blood work showed that she has improved in two weeks.  But her legs just won’t work.  And the doctors all agree that something isn’t quite right;  she is a fall risk.  The ER doctor bluntly said, ‘you can’t go home because you might fall and break your hip, and that would be terminal for you’.   Ouch.  But it was what Mom needed to hear.  It was what I needed to hear because I wasn’t so sure I was going to leave her there.

I am here at home today caring for my three grandsons.  The distraction is good.  My sister-in-law is at the hospital texting me periodically with updates:  ‘waiting for MRI…   gone for MRI…. will take about an hour…  Doctor just in…. He is coming up with nothing’.  Great.  Not what I wanted to hear, but I guess I don’t know what I want to hear.  I’m not sure there are any good scenarios here.

So I wait.   Hard to be here and not there.

I don’t think she’ll be coming back here for awhile.  I think they will try to do rehab somewhere.   That “somewhere” will most likely be the local nursing home.  And that makes me want to cry too.   I know Mom doesn’t want to go there.  I told her I would do everything I could to keep her here.  I just pray to God if she has to go there, it will only be temporary.   I don’t want her last days to be in a nursing home.

I fear she won’t come out.

 

 

 

She Just Listened For Our Cries

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I was born in a small town hospital and lived in an old white farmhouse for my first four years.  I hardly remember anything about that house.  There are a couple of snapshots in my head, but that’s about all.  I had two older sisters and one older brother;  he was still a baby himself when I came into this world.  I know my Mom was busy with all those kids.  Another sister was born three years later.  It’s a wonder she got any sleep at all.  They didn’t have baby monitors back then.   She just listened for our cries.

I had four babies of my own.  For the first three, I too just listened during the night.  I didn’t sleep soundly in those days.  The least little whimper from those kiddos, and I was wide awake.  I spent many nights in a comfy recliner, rocking babies and making promises to God if He would only make them sleep.  By the time our fourth and last baby was born, I had a baby monitor system.  I don’t know that we really needed it.  After all, I had never slept through a baby’s cry.  And the monitor only intensified every single burp and gurgle.  I think I got less sleep with that contraption.

Funny how life circles back around.  I’m lying in bed listening to my mom over a recently installed monitor.   I can hear her trying to get settled; a few grunts and several deep sighs.  I just tucked her into bed and turned off the light.    I don’t “tuck her in” every night.  She has been pretty independent, however, she is struggling right now.  Her legs are like noodles; not sure why.   As she was getting ready for bed, she dropped her hearing aid.  After bending or squatting to get it, she couldn’t get back up.  Thankfully, I was keeping watch in the hallway.   “Mom, you okay?  Do you need help?”    My husband and I easily stood her back up.  I know she hates this.  She hates being weak and dependent on anyone.

After she was done in the bathroom, I walked her back into the bedroom, and helped her into bed.  “Mom, please call me if you need to get up during the night.   Your legs are a little wobbly today.  Please let me help you.   I don’t mind getting up”.   I know she hates that too.   She doesn’t want to be a burden.   And she is not — no more than I was when I lived in her home and I needed her.

So as I listen over this monitor, waiting for her to fall asleep, emotion overtakes me and I begin to cry.  I let the tears freely fall and grieve for my Mom.    I’m worried about her.

I won’t sleep soundly tonight.   And that’s okay.

Lord, help me to enrich my Mom’s life.  I don’t want the days to just slip by.  I don’t want to get so caught up in the daily care of her body that I forget to nurture her spirit as well.  Lord, I love my Mom.   Help me to bless her.

Ephesians 4:29  Let no unwholesome word proceed from your mouth, but only such a word as is good for edification according to the need of the moment, that it may give grace to those who hear.

 

 

The Days Need To Be Sweet

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The whole saga about the memory patch seems like ancient history so much has happened this week.  I still don’t know if Mom took the patch off or not…. one phone call, yes; the next phone call, no.  It doesn’t even matter anymore.

Mom’s in the hospital — again.  Third time in as many months.  The nurses know her by name as her bed is wheeled into place.  She gained 20 pounds this week; all water.  I have called her every day, but I didn’t make it over there.  How can things change so quickly?  She gave no indication that she was retaining water.  The Cardiologist had just given her a stable report.  But here we go again….   Her heart won’t go out of AFIB….    And she is so confused; hard to hold a coherent conversation with her.  She is still trying to cover, and if I didn’t know the truth, she would be somewhat believable.  And that’s the hitch.  She isn’t doing well physically, and she is very confused — but tries to cover.  I don’t think she’ll be going back home alone.  I should have been better prepared.  We knew it would come to this, but it’s come much faster than we anticipated.

If she is sick, she’ll be willing to come here, but once she is a little better, she will be wanting to go home.   I don’t blame her.   It stinks.  Everyone wants to live in their own home.  So sad.

I need to get some books — I need to get educated on this.   I need to get prayed up!

God, please give us all the grace we need in the days ahead.   Help my siblings and I make these days loving and nurturing and sweet.  May my Mom feel loved and cherished.   We’re going to need your help.  And even as I write this, I feel a peace about it.  I know you will give all the grace we need to walk this road.  You have been faithful in the past … I can trust the days ahead to you.  And that is comforting.