Tag: family

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A reluctant peek over the wall

It’s been over four years since my last confession. I was about to write that it’s been four years since my last foray down the dimly lit hallway that is my memory and imagination. I took a rather long break from writing. This pause was brought on first by a crisis that turned into obligation and necessity. My journey as primary caregiver and power of attorney to parents each having a different variation of dementia started in 2010. From 2010 to 2018, my role was important, but I operated more in the background of their lives. I helped with their medication, their bills, shopping, driving and taking care of daily tasks. I was not helping them dress yet, nor bathe- nor prepare meals. However, on the weekend following Thanksgiving in 2018, everything changed. Mom fell and ended up with a pelvic fracture. She had to stay in a transitional care home for a month through the Christmas season. That is when Dad’s dementia became more severe. My role in their lives took on a new dimension. It was full tilt and responsibility for everything in their lives. That combined with my full-time job resulted in the loss of any “me” time. The time that I had previously carved out for myself to write was gone. In fact, I had no time for myself at all. As an only child- with no children and no spouse… I was it. I was and still am the only relation to care for my parents.

For the next 14 months, I never slept through a night. I rushed up the stairs to their bedroom every night when I heard a fall or a scream. I ended up installing video cameras and baby monitors so that I could hear them better. Middle of the night bed linen changes due to incontinence- experimenting with various incontinence undergarments did not help- they always leaked. I found that if I put multiple sheets on the bed and in between each sheet layered a plastic disposable tablecloth, then I could just pull off the wet one and one tablecloth- and have a new fresh sheet for them. This was amazing at 2am as I did not have to spend too much time worrying about their balance and safety while they waited for me to do a more involved bed change. That was a game changer. The incontinence bed linen changes were almost a nightly experience. And at times, those nightly interruptions involved falls- for both of them… at different times.

I endured a tremendous amount of stress managing two parents with fall risk and dementia. Even with help from an in-home care service, my world turned to chaos. The expense of the in-home care service which I employed so that I could continue to at least work full time in the home (remote work prior to the pandemic) was astronomical. We were blowing through my parents’ savings at around $6K-$8K a month depending on the extent of the needs on any given month… to care for them both daily! Even with that help, I went to a very dark place. On the December prior to the start of the pandemic, their doctor, family members (their siblings mostly) and social services urged me to move my parents both to an Assisted Living Facility because their care needs were more than one person could handle safely. Especially Dad now with his vascular dementia and Mom with Lewy Body Parkinsons and her continued balance issues. The move was the best decision.

After the move, I was still very involved with their care and handling their medical records and care was still an intense job. But their safety with trained professionals to help with daily care, was an incredible gift. The guilt was present most days as I listened to those voices tell me I was a failure for not being able to manage on my own. To make sure that they stayed in their home to the end. Logic helped to quiet those voices as I saw the amazing benefit of being able to return to the role of daughter once again. Our relationship improved and we were able to just enjoy each other rather than working in a role of daily service. And, for the first time in well over a year, I had a full night’s sleep.

Until someone navigates a world that includes baby monitors, video cameras in bedrooms and bathrooms in order to ensure safety… until someone has had to lift a parent from a bathroom floor covered in blood because of a fall due to balance issues… visit the ER many times in a year due to various scary medical incidents- some involving Trans Ischemic Attacks. Until someone has had to juggle full time care including making meals, helping with toileting (for both parents), bathing, dressing and ensuring their safety while working full time… until a person experiences a world that includes daily trauma- they should not judge a person’s step to having their loved ones move to a long-term care facility. The staff where my parents ended up- were and are still amazing. I had done a lot of work to find the best place- many tours, many hours filled with assessing. I worked with an elder care attorney to help me navigate my state’s laws and the benefits my parents could receive through government programs so that we could afford this solution long term. And while that was and continues to be an expensive service- the alternative would have been disastrous. The elder care attorney saved us in the end. I don’t know what we would have done without them and other social service programs. The quest for a perfect care facility is always nerve wracking and never a guarantee that those hours of searching will result in a perfect situation. Some friends commented at how terrible it was that this move happened just before the pandemic. For me, it felt like I had gotten them in just in time. I couldn’t have imagined our world in a pandemic situation with in home care givers not being able to come due to sickness or policies… I would have been completely on my own. Instead, my parents had professionals to help them daily and I could rest knowing that they were safe. And, because I was their primary care giver I was given permission to visit them starting the summer of 2020. While we had a few months of being limited to only phone visits, it was fine. We made it through. And, in the end, my parents ended up in a place that to this day, over three years later- is one that my Mom continues to praise. She often shares her gratitude with me and compliments the place that is filled with her friends (many of those friends are actually caregivers/staff). And, she has made friends with other residents and enjoys her days for the most part. Is it perfect? No. Is it what she had in her beautiful home all those years? No. It’s a different stage of her life that is playing out nicely- with good experiences, beneficial activities, friendships and solid care. She has friends there, she is content, and she is cared for and she is safe. And I can breathe knowing she is ok; she has the care she needs for the rest of her life.

Dad passed away almost two years ago – he was in his 90s with vascular dementia and his decline had been dramatic with his days in a Giudi Chair (a reclining chair used for dementia patients) and the staff having to use a Hoyer lift to move him from bed to chair.

So, my world changed dramatically. And writing was just no longer a part of it. Even if it could have been therapeutic, I did not want to write about what I was dealing with on a daily basis. I needed to escape, not relive every moment on the screen. So, I turned to knitting. The meditative quality of it helped more than I can even express.

Today something shifted in me. I decided to find my way back to the page. To dip my toe back into the water. I am essentially just peeking over the wall for now. I am not making a daily commitment. But rather, trying to find my balance again. Do I have it in me? Does the idea of a regular writing practice lure me as it did years ago? Does it excite me? I am not sure. But I like this first step.

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Dear Uncle

Dear Uncle Kjell,

I must preface this letter with an important request:  please do not share this letter with anyone other than Tante Siri.  I respect that in a marital partnership, secrets are devastating so I do not wish for you to have to carry a burden of secrecy between yourself and your wife.  However, I do hope you can keep this letter confidential otherwise.   My mother knows I am writing a letter, but she does not know the contents of this letter.  She only knows that I am writing to you to urge you to reach out to your brother in love.  The rest of this letter is private, with details I have kept hidden for decades.  Thank you, Uncle.

I have been struggling with the idea of this letter ever since I heard the news that you and Per are no longer talking.  My struggle comes from a conflict between minding my own business (after all what do I know about it all- probably very little … if nothing), and the pull inside my soul that urges me to speak up (I believe this is the spirit of God urging me to say something to you to help you).  Saying nothing to you would mean keeping things safe.  Saying nothing carries little risk for me.    Saying nothing carries a tremendous burden, because saying nothing is the coward’s way out.  Saying nothing results in my ability to carry on as if nothing is happening.    I have lived with the burden of saying nothing about certain things that happened in my own life, surrounding my brother, for about 37 years.  Saying nothing got him killed.  And now, all these years later, I have no brother alive; I am an only child living out my days supporting my parents (and they support me).  But I have lived with regret most of my life.

Speaking up, voicing concern, vocalizing the perspective that lies within- that is scary.  My mind reels as I consider all of the possible reactions and the fallout from this letter.   Some possibilities include: your anger, your disdain for my meddling, and your wrath on my mother (this the worst of all fears).  I have witnessed parts of your harbored anger or resentment towards people in your life (recalling various conversations over the years).  I recall your disdain for my father at your perception that he, in his old age, was careless of others (the ice cream incident in your village), and it is a bit scary to me.   My Dad has really had no money of his own for many years (Mom manages everything).   With his illnesses and vulnerabilities, Mom gives him a small allowance, that’s it.  So he has become used to not having money in his pockets- so his ice cream purchase that day which was just for him- was likely because he only had money to cover his own ice cream.  While their stay with you should have resulted in him “springing” for everyone’s ice cream, to harbor ill will towards him and label him stingy for this action, is misguided.  You wouldn’t have known that, but your judgment of him which you voiced to me- haunts me to this day.  In his old age, certain behaviors have changed- they are more childlike; something I have become accustomed to witnessing and also accustomed to overlooking.  For some years now, he has changed- and in some ways, I see a regression.   And, it’s not something I disrespect but rather, something that I have compassion for- it shifts something in me to see him in this way, so different from the strong and marvelous personality of his youth.   I don’t want you to be mad at me for mentioning these things, I only bring them up to tell you that over the years, your words have hurt others.  Your insensitivity has hurt others.  You have a strong generous side, and you also have a strong opinion and judgment side.  We all want to be loved, accepted, encouraged, cared for and we certainly don’t want to be discarded.

Over the years, I have found that people have a tendency to judge others.  I am not immune, I do not suggest that I am free of this tendency.  In fact, because of my own judgments, I recognize when folks around me exact judgment on others. And, this judgment can result in a strict penalty for behavior unbecoming.   We are not generally a merciful society.  We do not love one another.  We look out only for our own interests.  This is the godless society, the one that has not a care for the other soul but more interest in self-preservation.  What’s in it for me?

My heart broke when I heard about your reaction to your brother’s behavior.  I am not certain of the details of the incident, and I know that likely, this one incident was not the only sin he may have committed in your world.   I do know that you are a very wealthy man now.  That money is king in your life.   And, that something occurred which was based in a money transaction.  And this transaction has led you to mistrust him and feel betrayed by him.  This decision you have made to eliminate him from your life is a decision likely made because of buildup.  Perceptions and irritations over the years have indicated to you that his behavior and perhaps personality is in conflict with yours.  Being around him is unpleasant.  It brings you stress and strain.  It is uncomfortable.

I know a little bit about this discomfort.   I have had to forgive myself and my brother for several years of discomfort that I experienced with him which I held secret until one day, I cursed him, I told him to bugger off and leave me alone.   And he did just that.   He took my mother’s car keys and with his cousin, they headed out for a joy ride.   And, Joseph died.  What was so bothersome about his behavior that led me to scream such obscenities at him?  What could have possibly been so horrible that I used such strong language to tell him to go?   For a couple of years, there was sexual abuse going on.  It started innocently enough as one of those games certain children play which Joseph started:  you show me yours, I’ll show you mine.   This was generally done with cousins around so it was a group thing.   Later, Joseph threatened – show me yours because now you are a whore.  You have to show me yours.  He had paid me a dollar, so he said that now… I was a prostitute.  I had taken money for sex.  I was 11 years old.  Literally, this went on for about two years.   In my room, in the car (parents in front seat) he would taunt me.  Open his fly and look at me.  He would come in to my room at night, sometimes drunk and want to explore.  He was always getting into trouble, I was the good girl.  So I let him.  And I hated him.  And I hated me.  On May 13, 1979, we had family over at our house for Mother’s Day weekend, and once again, Joseph started the game in the basement with the cousins.  He was trying to get me paired up with my cousin Calvin.  He laughed that he was my pimp.  He mocked me.  And, I had enough.   My biggest mistake was that I had never told my parents.   And, I screamed at him.  And I cried.  And he left.  And, he died.

I have forgiven Joseph long ago- he was only a child himself.   I have forgiven me- I was only a child.   It took me a long time to get to a place of forgiveness.  When I was 16, I tried to kill myself with pills because I couldn’t handle that I turned 16 and Joseph didn’t.  I was rushed to the hospital, I went to counseling for a while, and they never heard my story, because I wouldn’t tell it to the counselor.  I was too ashamed of what had happened.  I felt I had killed my brother because I had kept silent.  Then, since counseling was not really working, and it was expensive, my parents asked me:  are you getting anything out of this?   I said no.  So, it was back to normal life – as normal as it could be.  And, my life since then has been deeply affected by this tragedy.  I have not had a normal life in the sense that 1978-1979 has affected my perspective on intimacy and on trust.  And, now perhaps I have shared too much, and even more important, this letter is not about me.  I bring it up only because it is about siblings.  It is about forgiveness and bearing with the sins of our blood relatives.  It’s about providing grace and mercy and not shutting each other out.

What sin has Per done that is so grave that you can’t reach out to your own brother and forgive him?   What has he done that is so horrible, that you can’t hold out an olive branch and say to him:  “it’s ok, let’s reconnect?” – that you can’t wrap your arms around him and say, “never mind- let’s get passed this?”  Can you not live with the idea that: while you don’t maybe like him very much, you must love him?    You have a brother.  He is a man who is flawed (as are we all).  You are flawed.  He is flawed. I am flawed.   We all need forgiveness, we all need love and we need each other.    We need forgiveness and mercy – not isolation.

Imagine if on this planet, people would forgive each other.  That they would reach out in love and mercy to one another and live peacefully together.   No war.  No murder.  No hell on earth.

I think about God in all of this.  I know that you don’t necessarily believe in Jesus and God literally.  Nor that you might speak with him regularly in prayer (how odd would that be? To actually talk to a God that is not physically present?).   But I do think about God.  Because he provided these amazing stories in his book- the bible.   Stories of deception and reconciliation.  Stories of hate and love.  Stories of loss and gain.  Examples on how we are to live our lives if we are to live them victoriously and pleasing in His eyes.   I think of the story of Joseph and his brothers.  How they sold him into slavery and abandoned him.  How in his slavery and in the many struggles, he maintained his love for his brothers even though they had betrayed him.   And, how he showed that love to them later in mercy … when he became a powerful man – he forgave them, and he loved them.  This story is found in Genesis 37.

God gave his son Jesus – who suffered and died on the cross, so that all sinners (me and everyone in this world) could be saved.    His death on the cross saves me because it prevents me from being separated from God for all eternity.   His love for me in sending his only son is so merciful and his forgiveness so undeserved by me, but he did this for all humanity.  If God can forgive me in this way, through the suffering and sacrifice of his son for me, and Jesus- suffering as he did (God incarnate) … how then can I not forgive others for their minor sins against me?    I must show mercy, I must give my love freely to others.  I am obligated to show grace (grace = undeserved favor).

I hope you receive this letter well. That you are not angry with me.  That you can see that I am concerned about you and Per out of a deep love.  I hope you can find a way to restore your connection with Per.  You don’t have to be best friends.   It shouldn’t be fake.  But that you can love him as your brother.    To honor him as your parents would want you to honor him.  To take care for him even when it seems he is unworthy of that care.  To put aside your own needs in favor of him.  He lost his daughter recently- she rejected him.  Now he loses his brother.   His sister is in America.   It’s tragic.  It is not right.  And, it’s not too late to right this wrong.

With love and care for you and our family.

Your niece,

Solveig

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The Box

I have now launched myself into the full depths of commitment to a specific theme and focus for the November Novel Writing Challenge within the NaNoWriMo 2015 writing contest. When the contest first made itself known to me through the Writer’s Digest Magazine only a few days ago, I didn’t have any ideas of what my novel might be about. This of course made me a little nervous, but somehow I knew it would not be an issue for me. Lately, having taken up the daily writing task once again, there are many threads flowing through me.. ideas that I want to explore and delve into.
Many weeks back, Mom and I had been talking about her aunt and the affair and this aunt’s family alliances and interests in communism. This brief discussion ended up being a jumping off point, an entree point into, the romance novel. I’ve never been a fan of the genre… so it was almost on a lark that I continued typing and bringing the characters together with the tension and conflict of their current condition. In one daily writing session,out flowed this story with twists and turns and character development that I tucked away for later. Again, I am not planning to be a romance novelist. But the story came back to me a few times during later days nudging me to pay attention to it.  Then one day, sitting at the kitchen table with my parents, I ask Mom if she remembers our discussion about her aunt. She nods, her eyes squint and she cocks her head slightly “Yes” she says tentatively “why”? “Well, you see, I sat down and wrote a piece after our talk, and I wondered if you would like to hear it”.   Dad beats her to it “yes”, he says.   She nods in agreement “Sure”.   Shoot, I think did I really want her to hear this.   I wonder how she will react and my brain scrambles back into my memory bank for a moment in an attempt to quickly recall what I might have written that could be awkward when read to parents. I can’t think of anything, it was pretty clean. I leave the kitchen to retrieve my iPad from my bag tht is sitting out on the chair in the hallway. I return powering it up.
I read the story to them. Through it, I hear their sighs and gasps and a small giggle here and there.   At the end, a long pause. Silence. They are both looking off into space – facing each other but each one’s vision is focused on a different point, high up on the kitchen walls just beyond one another. “You should really submit that to True Confessions” says Dad. “Thanks, but I don’t think I am ready for that just yet, I just wanted to share it with you to show you what I am up to lately”.   Mom is in deep thought. This is when she mentions that she has a picture of her- of her aunt.
So this kitchen exchange has been covered in previous posts- but what’s different now is that I pulled out that story again a couple of days ago. In my reread I see something different. I see possibility- a historical fiction piece with layers of various other themes. World War II, what led up to Norway’s occupation, what life was like during those years – for families and couples and lovers.  The aftermath.  The pulse of politics of the day in Norway. The various sides of the equation. An adult’s point of view as well as that of a child. I have a ready source right there under my roof. Mom’s memories of what life was like could be the start. My own childhood in Norway – visiting frequently with our cabin there and time spent in Oslo, this gives me a strong knowledge base for place and culture. My interest in history and politics will take me on an historic research adventure to a time and place that lends itself to intrigue, espionage, resistance movement, passion and fear.
Last night, I asked Mom: “What was it like really to be a child living during the war and the occupation in Norway?”. “Well, I was just a small child really. Unlike other places, Norway didn’t have any outward appearances of upset, we just quietly went about our business- we were quiet when we walked the streets. There weren’t any visible fights or conflicts between the german soldiers and the people of Norway. I remember the soldiers walking quietly down our streets with their german shepherds.” And I nod as this part of her story  that I recall from many earlier tellings over the years. It’s not that she didn’t share, but now I am wondering about the detail of it all. I am looking for a deeper reach into her memory. And then it comes, something new. “I do remember that we used to get a box once in awhile. These boxes came from Sweden..  You know, they were neutral and at times, we would get these donations boxes from over there. I remember Dad opening up the box and how disappointed we were sometimes – because really, the contents were just people’s throw aways. You know, stuff they didn’t want any longer. That’s why when I donate now, I only put things in that I feel the person would enjoy, something they truly need- you know, for a job interview or something like that. I don’t put things in that are worn out or dirty or just ugly. I put things in that I would want to find if I opened up a bag or a box llike that- give people not just what they need but dignity too.”  The box affected her – lasting her whole life.
Listening to her, I imagine a family and a young girl of around five years old, eager to open a box which would contain basic things that they might need because of shortages due to war. Maybe a clean fresh pair of tights and some shoes. Socks for everyone. Maybe a shirt for Dad. Sweaters, mittens, a hat and a scarf. Pants. Needing winter garments. And, even toys to keep the children occupied and content and mostly distracted, during the blackouts and air raids. A doll for a little girl that she could hold on to and craddle during those times of stress and fear. I hear Mom echo her recollections of years gone by: “I used to ask my father all the time: do you think there will be another war?” She was so afraid of another war.. and never really trusted that it was truly over. When the war ended, and Norway was once again free, Mom remembers the parades in the street – with music being played at full blast. She remembers the other parade as well- the one with the women who had been having affairs with the Nazi soldiers during the war. Any woman who had been involved with a Nazi was brought in, head shaved and she would have been paraded on a flat bed truck through the streets. The truck’s flat bed had been outfitted with a wall of wood as a backdrop and these women were now exposed for their war crime- for everyone to see. This was a stigma for these women that lasted for years to come. Some women fled to other countries, in the hopes of starting over.
So many impressions to explore. So, I use my Nina story from weeks gone by as a starting point and my mother’s memories and my history as a treasure trove of possibility. My travels to Norway, my understanding of language, religious perspective, political slant and relational backdrops to flavor and feed this novel. This NaNoWriMo 2015 is a challenge to finish a first draft. This opportunity is perfectly timed. So now, I work on the outline, the research and preparation of the basics for the official start date: November 1, 2015. My prep time is fairly short, but my background and my daily pages practice over the years (off and on I know- but nevertheless, I have been writing for most of my life- it’s just never been focused before). Now, I feel a focus and a wave of excitement that I have never experienced before… I am poised for lift off.