Saturday, February 28, 2015

When the Parent Becomes the Child

I have no idea how to write this post.  I really don't.  But I know it must be written.  For me.  For her.  For others.

I try to always tell the truth.  My truth (because that's all I really know).  Especially when I write, because I know it will last.  It will stand as a testament to who I am long after I remember saying or thinking it.

But sometimes our truths intersect.  My truth crosses your truth.  Who owns that portion in the middle, that shared truth?  Who has the right to present that to the world?

I want to be careful about that.  I want to honor the person who shares that space with me.  But I also want to tell the truth.

I hope that by owning up front that this is MY truth and not necessarily THE truth, it's okay for me to share.  This is about me and my mom.

My ability to recall memories is not great.  I have vague images.  And pictures.  I have those, and they help.

This is me and my mom on my wedding day.

As a teen, I always thought she wore too much makeup, and I never understood the hair.  But she was always put together.  She wouldn't leave the house until she "put her face on" and "cleaned herself up."  How she looked mattered to her.

And she was so sharp!  She was the one who edited my papers.  She could type and take shorthand like nobody's business.  She was the Administrative Assistant to the President of the local state college and totally rocked that job!  She was loved and admired by all who knew her.  I don't remember ever hearing anyone say anything negative about her.

That was twenty-five years ago.  She was two years older than I am now.  And things have changed.

It's been gradual.  Little things here and there.  Her asking me how to spell things.  Her not remembering the proper noun/verb correlation.  Her not able to figure out how to use a new cell phone.

This is the profile picture she chose for her facebook account when someone helped her set it up five or six years ago.
She felt it represented well her many moods.  I liked it then. 

It's painful for me now.  It feels like a way too accurate representation of her current fractured state.

I have these vague recollections of her coming to my grade school to do an art presentation.  Of her taking me garage sale-ing on Saturday and then to Arctic Circle for lunch.  Of her telling me I was her saving grace.  The only daughter she got.  The one who could understand her in a house full of men.  I remember her being my best friend - so many years ago.

I don't have a picture of her now.  I'm not sure I'd share it if I did; it wouldn't be a happy picture.

She's seventy-two now.  Only seventy-two.  I wasn't ready for it to happen so soon.

Because she's not her anymore.

I still live in the town I grew up in.  And it's the town she grew up in.  So I regularly run into people who knew me when I was little and she was so capable.  I even run into people who knew her when she was young, long before I was around.  People who grew up with her.

Inevitably the moment comes.  They ask the question.  The question I don't want to answer.  "How's your mom?"

And the only answer I can give is, "Not good."  As I start to tear up.

They ask what's wrong.  I don't know the answer.  None of us do.  My dad.  My brothers.  Me.  Her doctors - many, many doctors.  We each have a guess; we think we know.  But we don't.

My mom has fought anxiety, PTSD, and PMS for longer than I was aware.  I remember when I was young and she discovered walking.  Walking stabilized her.  Walking cleared her mind.  Walking was the mental medicine she needed that made her able to face her life again.  And so she walked.  Miles and miles all over town.

Back then, when I would run into people, they would say, "I see your mom out walking all the time."  Back then it meant they saw their friend and she looked good.  Like she was okay.  It was said with positive energy.  Now when they say, "I see your mom out walking," it's said with sadness and concern.

My mom still walks, when she can (she's injured right now).  And those miles she used to walk pale in comparison to the miles she walks now.  She's tiny and frail, and she will walk ten or fifteen miles a day.  Maybe more.  Because she no longer has a driver's license and she can't stay in one place.  Honestly, it feels like she's trying to escape her own self.

She no longer leaves the house beautifully coiffed.  She doesn't always have her makeup on.  She can't smell well enough to know if her clothes are really clean.  As long as they don't have major spills on them and are the right warmth for the weather, she'll wear them.  And off she goes.  Pulling her little rolling suitcase behind her.  Looking like a bag lady.

I remember many years ago, as her own mother was aging and having difficulty walking and preparing meals, my mom said, "If I could choose between losing my mind and losing my ability to walk, I'd choose to lose my mind.  As long as I can walk, I'll be okay."

I'm afraid her wish was granted.

I remember when she was strong.  And healthy.  And competent.  And happy.  But just vaguely.  Because I feel trapped in this moment.  I feel trapped in her hell.

She is angry much of the time, maybe most of the time - usually at my dad.  She has difficulty keeping track of what day it is, even when I've told her three times already in the last hour.  She doesn't prepare meals for herself, do her laundry, or meet most of her own care needs.  And she still thinks she's independent.  Most of the time.

She feels abandoned by my brothers who moved to another state years ago.  She feels abandoned when my dad leaves town, for an occasional respite - which he so badly needs and deserves.  She feels abandoned when my adult daughters stay with her instead of me.  And she feels abandoned when none of these things are true.

She feels abandoned that we don't understand.  Like we've left her alone to her anguish.

She will spend hours upon hours reliving all the traumas of her past.  Over and over.  Telling me the same stories again and again.  Of her pain.  Of all the things people did.  Of all the ways they hurt her.  And they are all true.  They are her truth.  And she is trapped there.

But it hurts.  It hurts me.

When my dad leaves town I become her primary caregiver.  It's my job to help her get where she needs to go, even when she can't decide where that is.  Even if it means dropping everything and going to pick her up at her motel room (which my dad rents for her by the month, because she has to have somewhere to go other than her house).  For the third time that day.  Or taking her to my house, because she feels peace there.

But those are the good days.  If all I have to do is take her where she needs to go and listen to her tell me for two hours straight how horrible my dad is and was, that's a good day.

Lately they haven't been good days.

Lately it's been her showing up at my door, pounding and pounding, hysterical.  Or calling.  Any hour of any day.  She's crying.  Sobbing.  "No one understands how bad I am!  I can't make it!  I just can't make it!  He doesn't care!  All he thinks about is himself!  No one cares!  No one will help me!"

And if I don't answer (because I'm not home and can't answer my door or I'm at church and have my phone off) then she feels abandoned by me.  And sometimes in those moments she'll turn to my brother in town.  And he'll help as best he can.

But usually it's me.  Often even when my dad is in town.  Because he and she have had another screaming match and she wants a divorce and her life will be all better if she could just get a divorce.

Because she can't see that he manages her world.  That he wraps his life around her and what she feels and what she needs.  That he drops everything, including his job, to come get her.  To take care of her.

Yes, they have an ugly history.  I know that.  I was there.  There were many years I prayed they would divorce because he was so mean.  So controlling.  So angry and unkind.

But he isn't that way now.  At least, not that I see.  I am sure there are times when he loses it and he yells back when she's screaming at him.  But not nearly as much as she is horrifically unkind to him.

Those rants I hear for hours and hours?  He gets them, too.  She just rips him up one side and down the other.  All while he is trying to help her.  Because sometimes she isn't clear in her expression of what she wants (when she can figure out what she wants).  And when he, or any of us, gets it wrong she says it's because we don't care what she wants.  We don't give a damn about her feelings.

A month ago, when she found out he was going to leave town to go golfing with my brother for six days (which we were happy about and fully supported, because he needs refueling - even if he won't admit it), she lost it again.  She showed up at my house - hysterical - and just cried and cried.  Not quiet I'm-so-sad cries.  Anguished end-of-the-world crying.  Lost.  Alone.  Abandoned.  Sobbing.  Screaming.  And somewhat slurred.

Because it turns out she took twice as many pain pills as she should.  Along with Ritalin.  And Valium.  And progesterone.  And whatever else she could think of that would take care of the pain and help her be calm enough to survive in her own skin.

I called my brother, who had prescribed the pain pills, and asked him what to do.  He sent her a text begging her to give me the pills.  He couldn't live with it if she died as a result of something he'd prescribed.  She gave me the pain pills.  And then I kept watch over her as she slept and watched Elvis in my living room for the next seven hours.  I tried to feed her, but the most I could get her to eat was half a banana.

You see, her teeth are very bad.  So bad that I don't think she brushes them anymore because it hurts.  She knows she needs to have work done on them, but her anxiety is too intense to sit through it.  So she can't eat anything that's not soft.  And she has gotten to the point that she usually doesn't even want to try.  She lives on Ensure and chocolate.  And water.  She will go days without having anything else.  I know this because I've lived with her for several days at a time.

That day when she took too much medication was a major turning point.  (Oh, who am I kidding?  I think she takes too much medication every day.)  Since then, she has needed nearly round the clock care.  Someone to be with her all the time.  Yes, someone to try to feed her and get her where she needs to go.  Someone to tell her when she can take what pain pills.  But mostly, someone to help manage her panic. 

She can't sleep well.  She can't walk much, because of her injury.  And the meds just don't manage the anxiety like they used to.  So she melts down.  And she needs someone there when she does.

This last week, which started with her pounding on our door at five in the morning on Sunday, was the most difficult for me yet.  There were at least five times in the four days I took care of her that I was sure we would be heading to the ER in the next five minutes.

I've taken care of a lot of people over the years.  I've acted as nurse to many people through surgery recovery, illness, and many emotional breakdowns.  I've raised five children (as a stay-at-home mom, so around the clock) from birth to adulthood.  I'm good at it.  I'm good at taking care of other people.  I am patient.  I am knowledgeable.  And I truly care.  I'm really good at it.

But this last week broke me.  Over and over.

When she showed up at five in the morning, my husband answered the door.  She was in a bad way again.  My dad had told her he was leaving town the next day and she'd lost it.  They'd gotten into another screaming match.

My husband was able to get her to lie down on our couch and try to sleep.  And then he let me know she was there so I wouldn't be hit with it unexpectedly when I got up.

I had a long day ahead of me at church, on my feet in an energetically demanding calling for two hours.  I hadn't had more than four hours of sleep the last two nights.  So when he told me she was there I tried so desperately to go back to sleep.  But, knowing she was there and was likely to throw off my entire morning (possibly the whole day) and bring that angry energy to my family and completely drain me on a day of rest, made it impossible to sleep.  I did stay in bed and at least try to rest.  Even as my panic and anxiety began to set in.

A couple hours later I got up and got ready for church.  I talked to her a bit as I put the evening's dinner in the crock pot.  Well, talked with her is not exactly right.  Two-way conversations don't happen much anymore.  She just talks and talks and talks and I just listen.  So as I walked around getting ready, she kept talking at me.  I have no idea what about, except how awful and self-centered my dad is.  (I would be lying if I said I don't sometimes tune her out while she's talking at me.)

Eventually I was ready and told her I needed to go, but my husband was there and would help her if she needed him.  I told her he could take her anywhere she needed to go.  And then I called him and told him he was on duty.  I could hear his heart drop in the answering sigh.

I went to church.  I had a wonderful, soothing day, as I almost always do.  And as I came out of church I checked my phone.

I had missed several calls from my mom.  And I had a voicemail.  The worst voicemail I've ever received.  Sobbing - "Robin, I need help!  I've made a mistake! I need you to come and get me! I need somebody to because everybody just doesn't think I'm as bad as I am! I can't make it! I can't make it anymore!!!  Please!" - followed by more sobbing.  I can't describe the emotion, panic, pain, and terror that I heard in her voice.

I also had a missed call from my local brother.  I called him back.  He was on his way to pick my mom up from her motel (where she'd had my husband take her).  My brother told me she had called my other brother, the doctor, and yelled at him about how worthless he was.  She also called my dad and told him she'd taken a bunch of pills and would see him in the morgue.  My brother was on his way to a job when she called and wondered if I could take over.  I told him I would meet him at her house.

You may be wondering why we didn't go immediately to the ER, after the statement about pills.  Honestly, she says a lot of things in anger that aren't even close to reality.  Especially to my dad.  She tries to punish him and strikes out quite frequently.  She wants to hurt him; she has said so.  But when I ask, she has no hesitation in telling me what she's taken.  As long as she can remember what she's taken.  So I knew the ER was a possibility (one I was terrified of), but wanted to talk to her first.  To assess the truth of the situation.  As it turns out, she didn't take a bunch of pills.  She didn't take anything other than her regular stuff.  She admitted she just said that to my dad because she was mad at him.

I stayed with her at her house for many hours.  (I wish I could truly convey what that day and those to follow were like.  It felt like she was an 18-month old child who is overly tired.  A child who is so tired but won't sleep.  She wants to be picked up and then when you do pick her up she hits you and wants to be put down.  She wants the toy but when you hand it to her she throws it back at you and hits you in the face.  You feel bad for her because you know she has no idea what to do with the emotions she's feeling but you don't know either and you're sure if she could just sleep things would be better.  And even though you feel bad for her your frustration at her unwillingness to comply grows.  And your stress grows.  And your sadness grows.  And you want to throw things, too.  You want to hit someone, too.  And you're getting no sleep, or even rest, because of her temper tantrums and she won't let anyone help her but you.  And it goes on for days and days.  It's a lot like that.  Except this toddler takes prescription medication [not always hers] according to her own whims and walks all over town any time of the day or night and has money and a cell phone to call a cab and is considered an adult who is in charge of her own life.  Oh, and she is completely verbal so she can tell you over and over how much you've failed her and how much everyone else who's trying to help has failed her and how none of you care and are all so selfish.  It's like that.)

As I said, my mom doesn't sleep well.  Even when she's taken enough meds to put down a horse.  So it was a day of trying to sleep.  Pacing and panicking because she can't sleep.  Her calling and texting my dad about what to do.  Him trying to help from another state.  Him calling and texting me asking what's going on and suggesting other things to try.  And encouraging me to try to keep her from going to the ER (which she does at least once every month or so).

My 24-year old daughter came over to relieve me for a few minutes so I could go home and finish dinner for my family and get some food.  I was only gone about fifteen minutes.  I then stayed with her until my 20-year old daughter (the one my dad had asked to stay with my mom while he was gone) came over at about ten thirty to spend the night.

I went home, hoping that now that my mom was finally sleeping she would be a bit better and my daughter could cover for a bit.  But my mom showed up at my door early the next morning telling me she couldn't make it.  And it started all over again.  A couple more times thinking we were going to end up in the ER.  Then she called her therapist who said she could see her later that day.  I know this usually calms her, so I was eager for this to happen.  Even though I don't always agree with this therapist.  Or what my mom presents as the things this therapist says.

Somehow we got through that day and got to the therapist.  I was hoping to get her in and go lie down in the car for an hour.  I just needed a few minutes alone.  A few minutes of not needing to take care of her.  A few minutes of not having to calm anyone but myself.  But it didn't work out that way.

My mom asked if I wanted to come in with her.  I said I would do whatever she wanted.  Her therapist suggested they meet together first and then invite me in if they needed me.  Which meant I needed to stay in the waiting room.

Half an hour or so later, her therapist invited me into the room.

This was rough.  My mom had gone there to get help from the therapist on how to divorce my dad.  The therapist asked me how I felt about my mom divorcing my dad.  I told her I didn't care at all if she and my dad stay married.  I spent years as a child praying they would get divorced.  I truly didn't care if they were married.  And then I paused.  I am always as truthful as possible in therapy.  This was the moment I worried about.  This was the moment I had to tell a painful truth to my mom.  This is the moment I knew I would hurt my mom.  Just the first of many that would happen in that session.  I said I didn't care if they divorced, but I worried about who would take care of my mom if that happened.  He does so much for her that she can't do for herself.  And I couldn't take that load on.  I just can't.

Lots of other discussion.  Lots of other distraction.  More truths I told her.
*  When she rejects one of us, she says it's because she needs someone who sees reality.  I challenged her on that and said, "Your reality.  Your reality isn't the same as the reality I see or others see."
*  When she called my dad manipulative I challenged her on that.  "What about when you called him and told him you'd taken a bunch of pills and would see him in the morgue?  Don't you think that was manipulative?"
*  When she said my dad has everyone on his side because he gives them money I challenged her on that.  "I have never felt obligated to take his side because he's given me money.  None of us do.  We're not taking sides.  We listen to both of you.  We try to help both of you.  We are not against you."

There were other truths I shared.  It did hurt her.  She's brought at least one of them up again since.  The one when I said I couldn't take the whole load on by myself.  Later that night or the next day (things are kind of blurring together), as I was getting my stuff together so I could go back over to her house with her, she walked out the front door.  She didn't tell anyone she was leaving or where she was going.  She didn't ask for a ride.  She just left.  I sent my daughter after her.  My daughter came back and said my mom was unwilling to come back.  She just needed to leave.  It was cold and my mom was in no condition to be out walking to who knows where.  I told my daughter to go get her in the car and bring her back.  My daughter said she wouldn't come back.  I told her to just bring her to the driveway and wait for me, she didn't need to come in.

I went to the car and asked her where she wanted to go.  She said she guessed she had to go to her motel.  She just couldn't go home.  She couldn't be in that house.  I asked her if she felt like she could be okay alone at the motel.  She said what other choice did she have.  She couldn't go home.  I asked if she wanted to come back into my house.  She said I had said I didn't want her calling me with her problems.  She said I had said I didn't want to help her.  I said that just wasn't true and what was she talking about?  She said that I'd said it in her therapy session.  I tried to clear up what I'd said.  I do want to help her, but I can't take on the whole load without dad.  I again asked if she wanted to come back in my house.  She said yes, if there was somewhere private and quiet that she could be.  (So far, she'd been in the living room.  It's the center of the house and the only gathering room other than the kitchen - we don't have a large house.)  I said she could try my bedroom.

I led her to my bedroom.  I helped her get settled on my bed.  I made sure she had what she needed nearby.  And then I sat in the chair by the bed and listened again, for half an hour or an hour.  When she finally felt stable, like maybe she could sleep, I left and closed the door.  She must have slept because I didn't see her again for hours.  (You would think I would rest during this time, but not so much.  In those moments I'm still on constant alert listening for her and knowing at any minute I could be called on again to manage another crisis.)  She got up and went to the bathroom once, but then went right back.  Eventually it was bedtime and I just curled up on the couch, hoping she'd get lots of sleep and finally feel better.

She came out a few times starting at about three in the morning.  I pretended to be asleep, although I woke up each time.  I was hoping if she thought I was sleeping she would go back to bed.  It worked three or four times, until it started to get light and she could see for sure that it was me on the couch.  She woke me a little after six, in another panic and wanting to go to the hospital.  I spent the next hour trying to settle her enough that I could get my kids up when I needed to and another hour after that as I tried to get my kids out the door for school.

A couple more days like that.  One night when she actually let my daughter be in charge and I got some sleep.  And so much panic and anger and recycling trauma.  And so many hours of me suppressing my feelings so I could do what needed to be done without causing her additional stress - and then going into the bathroom to break down in sobs from the emotional weight of it all.

Near the end of her therapy session, her therapist had asked if she could talk to me alone.  My mom said that would be fine and went to the waiting room.  As soon as the door was closed her therapist looked at me and said, "Do you think your mom is competent?"  Without missing a beat I answered, "No.  Absolutely not." 

Her therapist said she'd seen a noticeable decline in my mom since the last time she'd seen her.  She was very concerned about all the meds my mom takes and the addict behavior she displays.  Then she said she wanted her to have a neurological evaluation, to have her competency assessed.  She spelled out how to do that, recommended who to call, and told me what could happen afterward.  She said if my mom and dad divorce or separate that we would likely have to put her into assisted living.  And she told me my mom would likely be very angry with me and with her.

And I felt another weight drop heavily on my shoulders.  I now have the expectations and wishes of the therapist.  And the feelings and needs of my mom.  And the feelings and beliefs and stewardship that is my dad's.  And my brothers.  And my own issues, anxieties, panic, and sadness.  And somehow I am supposed to balance all this and figure out what is right.  What am I to do?  My dad is her primary caregiver.  How am I to tell him?  Should I tell him, knowing how my mom feels about him?  How much do I involve my brothers, not wanting to place extra burden on them?  And honestly, not wanting them to make my job harder by disagreeing with me when they aren't here and don't see what I see.

She thinks if she could just get on the right meds she'd be her old self again.  My dad thinks if she would just get off all the meds she'd be her old self again.  I'm not sure what my brothers think.  I think her old self is gone.  I think the meds are a problem.  I think she needs to be in a treatment center where they can take her off all the meds and figure out which she really needs and teach her to manage them properly.  Or hand the management off to someone else.  But I also think her mental capacity is declining.  A lot.  I think we are past the point of no return.  I think she will never be competent again, no matter what we do.  I think we are on a downward slope and we will just continue down until she dies.  But I could be wrong.

So, for now, I am sitting on it.  I'm not making a decision about what her therapist said and what to do with it.  My dad is back and has taken over, although I'm still getting calls for rides.  It's only a matter of time until another crisis.  And she will turn to me.  Or he will.  Because I've managed them well in the past and none of us knows what to do and we all reach out for the piece of driftwood that will keep us afloat just a little longer.  And I am often the driftwood.

And sometimes I'm the one sinking.

4 comments: said...

Oh, Robin. I am SO sorry!!! I just absolutely can't imagine how awful this must be for you, your family, your mother. Praying for you and your family as you face each day.

Unknown said...

Robin, my dear friend. I wish there were something I could do to take some of this away or shift this to something manageable or do something to give you additional strength. So I pray. My heart knows your experience even without living it because of him. So hard when the things that will heal us come with such terrifying side effects, like Job. I love you with all the love I am capable of loving and I know you will make it through this.

Katy said...

I'm so sorry, Robin! It all sounds so hard! :(

Ann said...

You are in such a difficult position; your whole family is. I wish there was a simple solution out there for all of you, but (from experience) I know there isn't.
You need to find someone to talk to for yourself, not necessarily a therapist, but someone who can help you sort out your feelings and show you that you're doing a good job; that you can't fix this and that you shouldn't feel guilty about that. I hope you can find that person, whether its a friend, a minister, or even a therapist.
When we put my parents into a hospice program, one of the best things about it was that they were concerned about my sister and I (as the main caregivers) as much as they were about my parents.
Good luck and prayers to you all.