Mother’s Day, Two Ways

Today is Mother’s Day, 2014 (May 11- kind of early this year).  So much comes up whenever there is anything to do with moms and family.  I was put up for adoption at birth, though not at the wishes of my biological mother (by a long shot).  She was nearly 18 years old, but in the early 1960s, the ‘image’ of the family was one to be protected at all costs in most families, totally blowing off the wishes of the biological mother, AND biological father.  The fathers weren’t considered at all- his name isn’t even on my birth certificate, though I know much more about him now.

The mom who raised me, who I just call my ‘mom’ since she’s the one I knew the longest, and who raised me, died on March 13, 2003 after a brief illness (urosepsis that wasn’t treated properly at an ER near Phoenix, AZ).  She had become demented after radiation to her brain after a tumor was removed- that was the last cancer she had to deal with after breast, some suspicious pre-cancerous cells on the other breast, and lung metastasis.  She went through hell with cancer- and it didn’t kill her.  She survived cancer free for seventeen YEARS from the last cancer surgery when she died.

One of my favorite photos of my mom... Taken around 1988.

One of my favorite photos of my mom… Taken around 1988.

Our last Christmas, 2002... we had no idea she'd be gone less than 3 months later.

Our last Christmas, 2002… we had no idea she’d be gone less than 3 months later.

Cancer wasn’t the only thing my mom had to deal with, and that was much less emotionally painful than the death of two newborn sons about 2 years apart, by the time she was 26 years old.  She never got to see either of those babies.  They were a bit early from placental abruption (tearing away from the uterus – in her case, partially), and their lungs weren’t developed. Back in the late 1950s and early 1960s, they didn’t have NICUs, so it was sort of a crapshoot who lived and who died.  They both succumbed to hyaline membrane disease.  Now, they would have had an outstanding chance of survival, especially since they both weighed enough that they had no weight to gain in order to be sent home.  Their little lungs just didn’t work.   My mom wanted kids (so did my dad, but mom was the one who ‘needed’ a baby).  She was the oldest of four siblings, and she wanted the same. I ended up being an only child.

But the deaths of those two babies changed her, understandably so especially considering how infant deaths were handled back then.  She never saw them, never had photos, couldn’t go to their burials (which my young dad had to take care of on his own), and was basically told that it was in the past, don’t bother with it.  She was in the hospital for at least a week, so she was there as long as both of them lived- and never saw them. She was basically told to move on.  It was cruel.  She never forgot those boys.  It made bonding with me difficult for her, but I never doubted that she loved me.  My guess is that she didn’t want to get ‘too’ attached, should something happen to me, especially in my early years.  Later on, beginning when the adoption was finalized in August of 1964, she knew I couldn’t be taken from her, which helped.  But she still had a lot of grief that never was dealt with in a way that was of much help.  Things like that just weren’t considered  an ‘issue’.   And she hurt from those losses.  When I finally understood that, it helped me see her with much more compassion.

My mom did the best she could.  She returned to college and became an elementary school teacher.  Her students loved her, which confused me, since they saw a side of her I didn’t .  They weren’t a ‘risk’ to get close to- they went home every night, and she knew her relationship with them was just distant enough to allow for more displays of warmth and ‘teacher affection’.  Many of her students came to her visitation after she died, and still remembered her very fondly.  She and I had a strained relationship for many years.  I never doubted her love for me, and knew she wanted me. From the beginning, she read stories to me about how adopted kids are ‘chosen’, and how she and dad waited a long time to get me (about 2 years).

She and I had our worst battles when clothes shopping. There were some epic fights that dad learned to listen for the number of slams from the garage door when we got home. One meant one of us was mad, two meant he needed to lie low for a while, since we were both seething.  😮  I’ve never been a frilly girl.  I loved dolls and dollhouses, and also chasing frogs and turtles and climbing trees.  I was NOT cut out for fancy smocked dresses (Polly Flinder’s was her favorite brand), and much preferred shorts and t-shirts, and loathed anything ‘girly’.  My favorite dress as a kid had monkeys on it- no lace or smocking or bows.   But, she and dad made sure I had everything I needed, and then some.  I took all sorts of lessons (ballet, tap, tumbling, figure skating- my favorite, flute, piano, swimming, tennis, horseback riding- at camp), and I got to go to camp for a week every summer before 4th-11th grades (and later worked on summer staff there).  I went to day camps in the summer before then.  They exposed me to all sorts of art (which annoyed me- I much preferred the natural history and geology museum next to the local art museum, where I could look at rocks and fossils). They traveled extensively, and when it was appropriate (like being gone ON Christmas for the Hawaii trip, or when I was older and in my teens for the month in Europe, or traveling throughout the US), I went with them. On several trips, dad made sure that we saw historical and/or National  Park sites, as well as stuff that was just fun (the Olympic Ice Rink in Innsbruk, Austria, where Dorothy Hamill had won her gold medal the year before we were there- he had hoped I’d be able to skate during a public session, but they were doing lessons).

My mom drove me to Texas when  I moved there after getting my RN license in late 1985 (back in the days when they came by mail).  We had a GREAT time going down there.  Whenever she and dad visited, we had wonderful holidays together (usually they came at Christmas, but sometimes in the Spring- either going to or from their winters away from the cold Midwest).  I loved when they came.  The memories I have are mostly good, and as I’ve gotten older, I’ve become so much more aware at how much pain she must have had when those babies died.  She never had any image to remember them by- just that she had two babies that never got to come home.

My biological mother and I have a great relationship.  Out of respect for her wishes, I don’t post photos of her.  We had a brief connection back when I was 19 years old, but it turned out both of us needed some time to get it all figured out- suddenly connecting after 19 years of wondering about each other was hard.    Then we had many years of no contact, except via word through  an aunt and uncle, and cousins that I got to know during our initial contact and several months of letter writing.  She had wanted me.  Giving me up wasn’t her idea.  She went through a lot, and also had no image of me to ‘know’ after I was born.    We now talk about all of that stuff, and it’s been amazing to find out how much we’re alike in so many ways.  It’s been good to know where I came from, and where I get some of my personality traits and other characteristics.  While I was always accepted by my adoptive family, there’s a gap that can only be filled by knowing about origins- at least for me.  I understand myself a bit better by getting to know her.

It’s been awkward with all of the ‘labels’.  My mom is the one who raised me, yet without my biological mother, I wouldn’t exist.  I call her by her first name, or ‘bio-mom’ when writing.  When looking for Mother’s Day cards, this is the first year I’ve seen a ‘real’ one from Hallmark for birth-mothers. There are some  through some specialty online sites, which are fine- but it’s nice to be able to choose one… and one it was.  :/   They had one to ‘choose’ from.  I had to make a couple of adjustments, since adoptive situations aren’t one-size-fits-all.  And the ‘regular’ ones talk about years spent together from infancy on, and those aren’t appropriate.  For her, I’m her daughter- that’s the only term that’s appropriate.  For me, it’s a little more complicated.  But I’m so thankful for both of them.  I wish my mom could have met my biological mom.  She knew when we were writing when I was 19, and also wrote to her during that time.  But my mom died almost 7 years before my bio-mom and I reconnected.

When I was going through chemo for leukemia, I wrote to her- and wanted to give us a chance to reconnect should the leukemia stuff not go well.  I didn’t want her to hear that I’d been sick from someone else, especially since she’d already buried one son (I still have a very alive half-brother that I’ve met and had some contact with- he’s a hoot, and I really enjoy talking to him on some holidays, and whenever he is en route to see  his dad’s family – who have also ‘readopted’ me; there are also two half-brothers on my biological father’s side).  Turns out, it was the right time for both of us, and we have been in regular contact since then, sometimes spending 3-4 hours on a single phone call !  I love when she visits 🙂

I’ve been blessed.  I was wanted from before my birth, by two mothers. On the day I was born, my mom told my dad that she knew that ‘their’ baby had been born that day (this was in the day of closed adoptions, where there was never any contact with anyone in the biological family at all).   One was forced to give me up, and the other was doing her best to grieve the loss of two newborns of her own while becoming a mom to me.  One wondered about me for decades, while the other created memories for as long as she could.  I love them both.  One gave me life, and the other taught me how to live.  I was able to hug one throughout my childhood and until I was thirty-nine years old, and the other has been in my heart and thoughts since I was old enough to understand what it meant to be adopted- and now I have the personal relationship with her.

I’ll never know what it’s like to be a mom… but I have ( or had) two amazing women in my life in that role- however it’s described.

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Remembering Peeps and Mom

Mom loved Peeps

Mom loved Peeps

This week will mark the 10th anniversary of my mom’s death.  It really was a miracle that she lived as long as she did, considering bilateral breast cancer (one side was actually ‘pre-cancerous’ but required a simple mastectomy, but the other side required a radical mastectomy), metastasis to her right lung, and metastasis to the right side of her brain.  Those are ‘just’ the cancer sites…she also had other cancer-related diagnoses including seizures that started well after her cancer treatment and dementia as a result of brain radiation.  The dementia was the hardest to watch. On March 13, 2003, she died after becoming septic from a urinary tract infection. She couldn’t verbalize symptoms very well, so dad didn’t know how sick she was until she began to have increased seizures and became unconscious during their winter away in Arizona. She had been ‘fine’ the day before, and had been with him at an art gallery.   Mismanagement (neglect) by the emergency room where she had been taken by ambulance (unconscious) took away any chance she may have had (they sent her home when she needed IV antibiotics- not pills and an elderly husband as her only caregiver more than 2000 miles from home)…but dad and I have to look at it this way: at least she didn’t end up in a facility not knowing anybody, and being impossible to care for at home. She survived 17 years after her last cancer diagnosis… I don’t know many people who have survived the all of the various cancers she had, especially back then.  If I remember right, her first breast cancer diagnosis was in 1981.  Things have changed a lot.

My mom and I were never all that close. For decades, I knew she loved me, but didn’t have a clue if she actually liked me. It was a hard way to grow up, especially when I was little.  As I got older (as an adult) and was able to imagine things from a point of view of someone in her situation (she had two newborn baby boys die within two weeks of their birth about 2 years apart  by the time she was about 25 years old), it made more sense that she couldn’t allow herself the luxury of being  vulnerable to more loss.  She was able to convey warmth to her students during the years she taught 2nd grade and later 4th grade and in the resource room at Rockford Christian Elementary School; they weren’t hers to lose; she could risk more of herself… but I never saw that degree of warmth.  I get it now.  She wanted me. She loved me. And she was terrified of losing me (confirmed by her mother).  It’s heartbreaking to look back at what she went through.  As a kid, I didn’t get it.  I just felt like she wanted me out of her way. I’m glad I was able to get past that as an adult, and feel compassion towards her.  She did the best she could most of the time.  I may not understand her reasons for some things, but I think most people do the best with what they are equipped to handle.  Add the loss of two newborns before her brain was even done growing, and more makes sense. That in and of itself would change her brain chemistry.

As mom’s dementia progressed, she had fewer and fewer things that she remembered and gave her some degree of pleasure. She watched the same movies over and over again, since she remembered them (and do NOT call  her while she was watching them, or she’d hang up on  you- something she’d never do in her ‘normal’ years).  She loved sweet stuff, which I’m told isn’t how she was when she was younger. I do remember her liking ‘Fifth Avenue’ candy bars when we went grocery shopping when I was a kid. She also was quite willing to take my Halloween candy leftovers (I didn’t like Baby Ruths, peanut butter taffy, or most marshmallow candy).  All I had to do was sort it, and give her my rejects- and she loved them.  During her dementia years, spice drops (gum drops) and Peeps were favorites. I made sure she had gum drops when she and dad visited me in Texas.

Peeps began making their marshmallow candies for holidays other than Easter, so I’d go to the store the day after holidays and buy mom a bunch of Peeps when they were half-price. They hardly weighed anything, so I’d mail them to her in Illinois from where I was in Texas.  She loved getting those ‘care packages’. Dad, however, was not all that amused by having to police them, since she’d eat them all at once if left alone with them.  This is the guy who would go all over town in July looking for pumpkin pie since mom thought it was Thanksgiving.  With the Peeps, he’d hear “I want some Peeps” multiple times a day until they were gone.  She remembered they were there…

Whenever I see Peeps, I think of her and the simple things that made her happy during her last several years.  As hard as it was to watch her slip away and become someone who was so unlike the ‘normal’ her, it was also so easy to make her happy.  I never felt I could do things ‘good enough’ as a kid- it may sound sappy, but I wanted to do something to make her happy when she had so little of her real self left.  For dad, it was hunting for pumpkin pie (and other goodies) during the off-season for whatever she had in her head that she had to have. For me, especially before I moved back home to help dad take care of her, it was gum drops when they visited, and Peeps to mail to her.  I don’t like Peeps at all.  But they do make me smile when I think of how happy they made her .  🙂

Peeps remind me of my mom

Peeps remind me of my mom

The Legendary Swedish Christmas Parties of My Youth

My mom had friends who wanted their sons to marry me so they could get an invite to our Swedish family Christmas parties.  When I was a kid, they were THE family party to look forward to every year.  My paternal grandmother had  a dozen siblings, and while not all of them were in the Chicago area (or even in the United States- or alive), most were at least within driving distance.  They rotated whose home hosted the dysfunctional chaos, er…uh, party. In those days, it wasn’t a potluck- the hostess did all of the cooking.  That in itself was a major undertaking. Add 50-60 people in various ages and stages of sobriety to the mix, and it was a big deal!  I loved it!   One year, dad was anxious about driving in the bad weather… he’d heard about some folks who had skidded off of the highway (not the bazillion who got through).  Mom and I started bawling.  Dad ended up taking the plunge, probably wanting to risk ending up in a ditch vs. dealing with being blamed for ruining Christmas that year.  We got there and home just fine.

My dad’s parents both came over on a boat from Sweden in the early 1920’s.  They were on separate trips, but left from the same place in Sweden (Goteborg), and on the same ship (Drottningholm), though different years. Grandpa thought that anything was a party; he had a great time en route to a whole new life in America ( and later, just mowing the lawn). Grandma wasn’t as fortunate on the trip. Her many siblings were of some comfort, but at Ellis Island, they ‘lost’ one of their sisters in the fray and later found her at the hospital on Ellis Island.  She later was taken back to Sweden for medical reasons, and died as a young adult. On the train from NYC to Chicago, somebody (not family) slit their own throat in the train bathroom and they had to watch blood flow down the aisle of the train.  They were young- some just kids.  And they were terrified. Nobody spoke English. But they all brought their ethnic cooking and holiday customs with them.  All of the various great aunts and uncles, and assorted cousins of parents, second cousins, first cousins once removed, and so on all reaped the benefits of those celebrations.

The Christmas Eve celebrations began in late afternoon at someone’s home.  The women of the generation that came over on the boats were generally involved in helping with the final cooking and food prep, and getting the table filled with food that was served buffet (or smorgasbord) style.  The ‘middle’ generation (those born in the United States to those who came over on the boats) were busy getting caught up on the year’s events….and drinking glögg (more on that in a minute). The youngest generation were running amok. There were basically two ‘sets’ of ages to this third group. I was in the  younger group.  The older group was 3-12 years older than I was (give or take a couple of years).  We just had fun and enjoyed seeing each other.

 

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Christmas Eve 1932…. my dad was about 4 months old.

Before getting to that smorgasbord, there was a tradition of making a sort of semi-sedate conga line, everyone holding the waist of the person ahead of them, and making a chain throughout the house, moving to the song ‘Nu År Det Jul Igen’ (It’s Christmas Time Again).  It was mandatory. Only one person really knew the words to the whole song (one of grandma’s sister-in-laws), and the rest of us mostly mumbled to the tune.  It is a catchy little number!  If anybody has seen the movie ‘Fannie and Alexander’, it’s in there. And the song itself is  on YouTube.

The smorgasbord  was a precursor to the high protein diet craze. Most carbohydrates had a rough time getting on that table. There was always ham (and for the host family, ham for days in various incarnations), Bondost (Swedish farmer cheese with caraway seeds), ‘korv’ (pork and potato boiled sausage), pickled herring, sylta (think ground veal jello- not my favorite), Swedish meatballs (a very special recipe that I still make),  lingonberries (tiny Swedish cranberry-like fruit), and the other permitted carbs: hardtack (thick rye cracker) and limpa (Swedish rye bread), some baked brown beans that are like ‘regular’ baked beans (I hated them, and still do), a green lime and pear jello mold (another ‘I’ll pass’ item), and boiled potatoes. Must have boiled potatoes.  Carbohydrates were more like condiments than a food group for the holiday dinner…except for the cookies later in the evening.  It was an amazing meal that I looked forward to every year.

At midnight, lutefisk was served (with more boiled potatoes, a cream sauce, and nutmeg).  There are many jokes about lutefisk, and for good reason.  It’s cod that has been soaked in lye, and then dried (to preserve it back in the days before refrigeration or freezers for long journeys on ships, or just because; during the winter, living near the Arctic Circle made for some iffy fishing opportunities). Lye is the same stuff used to make soap, oven cleaners, and drain opener. The fish had to be rinsed in water for days (water changed daily) to be sure it didn’t create an opening between the esophagus and neck when someone ate it as the lye ate through the person.  Sounds yummy, eh?  It was/is so popular in Scandanavian circles that it is sold in plastic bags, packed in some of that final stage of rinse water, ready to heat and eat!  Once boiled, the texture is similar to gelatinized rubber bands. With fish flavor. Strong fish flavor. Are you hungry now?   I haven’t had the stuff for decades, but I did eat it as a kid.  Those who have read some of my other posts know that my food intake was very restricted when I was a kid; I’d eat just about anything when I was turned loose at the Christmas party. Except the cloyingly sweet baked beans, and that green jello mold. Not going near those.  Had to save room for cookies 🙂

For those who don’t know about glögg, it is a mixture of brandy, port wine, some ‘warm’ spices, orange rind, almonds (had to have one in the bottom of each cup, or some horrible Scandinavian evils would find their way to the unlucky imbiber) and Everclear…or basically the kerosene of drinkable alcohol. To make it so that it wasn’t a form of euthanasia, it had to be ignited to burn off some of the alcohol.  That just meant that more was consumed.  There were some bonafide alcoholics in this family.  For the most part, they just got rowdy and loved everything ! I don’t remember any mean drunks… and for a long time I didn’t even realize why Santa didn’t show up until 2-3 a.m..  One of the first generation had to sober up enough to dole out the presents in a Santa suit, and it had to be one of the older generation, as the middle generation had kids who would miss a parent during the gift opening.  Us kids would be dozing off, and jerking ourselves awake when we realized that we were still waiting for Santa to show up. They were long nights ! But the sort of dysfunction that made for amazing memories 🙂

The glögg did have some unpleasant effects; one year a neighbor of the host and hostess knocked on the door to inquire as to the identity of the person who was face planted in the snow pile out front, with his arse in the air…my dad and one of his cousins went and fished out Cousin B from the pile of snow in the front yard… Good times !

Eventually, someone would come stumbling down the stairs shouting ‘Ho, ho, ho’ and laughing in a jolly manner. All of us kids would suddenly perk up.  Often, someone was walking closely with ‘Claus, and I now wonder if it was for stability should ‘Claus start having trouble with his balance and gravity.  To me, it was the start of an amazing thing. It fascinated me that whatever I flagged in the JCPenney Christmas toy catalog  at grandma and grandpa J’s house would show up from Santa !  (I was the only grandchild of my paternal grandparents).  Grandma seemed to have some direct connections to the North Pole. (And Grandma J never told Santa I needed socks or undies). Imagine 6 of us ‘younger’ kids and 4-5 (depending on the age cut-off) of the ‘older’ kids all opening gifts at one time, in their respective ‘groups’ of families. Gift wrap, bows, and boxes would be coming down blizzard style. It truly was a magical time, especially when we were younger.  Looking back at the old photos, it’s obvious who was stuffed into the Santa suit; as children, we were mesmerized to be in the presence of the ‘real’ Santa Claus.

Every year was fun. It was a holiday that was steeped in ethnic traditions that made it special, and unlike anything I’d see on TV or heard friends talk about. The real reason for the season was sprinkled into the evening at some point, but Jesus’ birth was not the main focus of the celebration.  My parents and I always celebrated church Christmas events, so I was very aware of the meaning of Christmas; the Swedish party was the heritage part of the season.  I loved those parties. We still have smaller versions of the old days, with family who is in town (or at least nearby), and some years, those who have moved away will join in. Now it’s a potluck, which makes it nice to be able to contribute, and not as horrible on the hostess.  I’ve been limited in actually being at the parties due to the heat intolerance with the dysautonomia, but with the ice vest I now have, I’ve at least been able to go to the last part of the evening  It’s much earlier in the evening  than it was when I was a kid, and the glögg is enjoyed in moderation (I can’t drink at all for medication reasons).  I make the meatballs to send with my dad- same recipe that we had at the old parties. The ‘dance’ before eating is still done.

It’s still a very special part of the holidays, and wonderful to remember the ‘old days’. So many are no longer alive, but thanks to those decades of  incredible family parties, they are still there in spirit.

Swedish Christmas Eve, and my cousin's last Christmas…

Swedish Christmas Eve, and my cousin’s last Christmas…

Edit:  Christmas Eve 2013 was bittersweet… while the old traditions were still there, and our heritage was celebrated in familiar ways, it was the last Christmas for one of my cousins, who had been battling cancer since the summer.  At Christmas, I was still hoping things would be OK eventually, but I was also concerned about some new things she told me about.  She lost her fierce battle on March 2, 2014.   Her mother (dad’s first cousin) died later in 2014.   She was the hostess of the Christmas Eve parties for many, many years.

And, in 2016… it will be much different this year without dad.   SO much family history was tied up in the Swedish Christmas Eve party…. and it will be missed.   I’m so thankful for the incredible memories.  ❤

When Dad Had Surgery

Those who have read my blogs know that my family is no stranger to various cancers and health issues.  My mom had bilateral mastectomies (separate surgeries), a lung resection, and brain tumor removed- all cancer. She also had chemotherapy and radiation. I’m a medical train wreck, including leukemia (APL/ AML- sub-type M3), diabetes, dysautonomia, multiple pulmonary emboli (all three lobes- acute, subacute, and chronic -all found at the same time), lung scarring, seizures, multiple concussions, yadda, yadda, yadda…  My dad has been the rock for both of us (mom died in 2003, after being 17 years free of cancer, but with 10 years of dementia caused by the radiation to her brain; she died from sepsis- not cancer).  Dad is the one who takes care of my beloved schnauzer when I’ve been in the hospital.  He didn’t own a bottle of Tylenol until a month ago.

Dad had to go to the doctor for an annual look-see before getting his year of thyroid pills refilled. The doc poked and prodded on his neck, as per usual, and felt ‘something’. He decided he wanted to get an ultrasound to figure out what the hard pea-sized ‘thing’ actually was.  Dad got scanned (I had to reassure him that it was painless and very quick), and instead they found a large (2 x 1.5 x 1.5 inch) mass coming up from the right side of his thyroid.  That’s BIG for the neck area- there are a lot of veins, nerves, arteries, muscle, windpipe, and esophagus related structures in there.  Now they wanted a biopsy.  Numb it up, take some needles and withdraw some of the tissue. They did that, and dad did well… the results, however, were inconclusive.  He was sent to a neck surgeon to figure out the next step.

The neck doc had seen the biopsy and ultrasound results, and felt that it was a cancer, but that it had actually replaced the actual thyroid tissue on the right side; the left side looked OK, at least from the tests.  The ENT surgeon (neck doc) decided to get a CT of the area to check for any lymph node involvement. He did feel that it was some sort of cancer, but reassured dad, and myself, that the vast majority of thyroid cancers are fixed with surgery. Dad should be fine.  But, in the meantime, they wanted to get some more biopsy material, to see if they could narrow down what was going on in there- but bottom line, the thing had to be removed.  It was too squirrelly to leave in there.

Dad is a guy who is 80 years old, and takes a lousy Synthroid pill every day. That’s it. He lives alone, runs around ALL over the place, has a social life that pretty well has him ‘booked’ every day with something, and has really never known anything about chronic or life-altering illness. He has been incredibly blessed.  He had a busted appendix in the early 80s- that was bad. But he got well. He had his gallbladder removed, and aside from post-op vomiting, he was good to go in a week.  He’s been remarkably healthy.  SO, all of this medical stuff that involved HIM was completely foreign.  Mom had numerous surgeries and became totally dependent on him during her last 10 years (he was amazing as he cared for her at home). I’m mostly independent, but when I’m in the hospital, he’s been the go-to guy to make sure my dog is OK, and my laundry gets done when I’m holed up. He has been really healthy.  This whole ‘being sick’ thing isn’t something he really knew what to do with.

While I know that I’m likely to outlive him, I hate even thinking about him not being here.  I have very few people around here that are very present in my life. I’ve got friends- mostly in Texas. The people I know here are mostly interacted with on FaceBook- most I haven’t seen in 30 years.  Dad is the person I talk to daily.  He’s the one who I know always has my back. I don’t have anyone else who could take care of a schnauzer in heart failure with medications (or who even knows her very well), or who I can call for just about anything.   I have some amazing and incredibly dear family scattered about… but dad is just a few minutes away. They are wonderful, yet my physical situation doesn’t make it possible for me to be all that mobile to see them all that much; I certainly feel that I’ve been too much on the ‘fringes’ to just call anyone.  Thinking that something could be wrong- and BAD wrong- with him was a lot to take in.  I have been going to MD appointments with him during this- partly because I want to be supportive, and partly because I’m an RN (disabled, but still have my license since I earned it, and it is MINE) and understand more of the medical terminology, so when we leave, I know how to answer his questions better.

The day for surgery finally came, and while a friend of his got him to the hospital, I definitely wanted to be there before he went into surgery. I wanted to talk to the anesthesiologist about his severe vomiting after getting Versed for other procedures (the anesthesiologist practically challenged me on that- said it wasn’t possible- must be the gasses used, even though it was the only common denominator the times dad had gotten sick- and a few times he hadn’t had ANY gas….time to back off when the doctor thinks he’s always right- wouldn’t help dad, and the doc wasn’t going to listen).   He ended up giving dad Versed, and sure enough, he was sick- though not nearly as badly as other times since they gave him more anti-nausea meds post-op.  Evidently, this type of surgery is more likely to cause a problem with nausea and vomiting because of one of the nerves in that area- which dad didn’t need to hear minutes before going into surgery.  He was already terrified.

They wheeled him off, and his friend and I began the wait.  It took about 3-3.5 hours for the actual surgery, then about 2 hours in recovery. After the surgery, the surgeon (who is wonderful) came out and talked to us.  The initial pathology report sounded potentially ominous. He thought it was a low grade lymphoma, and it might require chemotherapy. It wasn’t thyroid cancer. But until the final pathology reports were back in about 5 days, there wouldn’t be any more information than that.  No point in telling dad part of the story, so he could worry- we all planned to stick with ‘the final pathology reports aren’t back’ which was true, and kept him from spending days in terror thinking he was up against something terminal.  Nobody hears ‘cancer’ and their first thought is that it’s positive.  Since I’d been through extensive chemotherapy, my initial reaction was that he’d have that to deal with, even though most chemo isn’t a daily occurrence.  Most chemo is anywhere from every few months to a few times a week (until the time when pills are used daily for maintenance for a period of time).  I cried. I didn’t want that miserable existence for him…he was always on the go.  Having an indeterminate amount of time to deal with feeling lousy was no way to spend the precious years he has to live.  He’s no where close to slowing down.

Dad stayed in the hospital for 2 full days after surgery. More on that in another post.  He did  pretty well from a nursing standpoint, but from the perspective of a daughter, he had one rough day after surgery and was gradually improving, but it was still tough to see my active, never-holding-still dad lying in a bed, or sitting in very institutional furniture.  My dad who can graze his way through the day eating anything in sight was doing well to get a diet Sierra Mist down.  This is a guy who likes to eat!  He was nauseated most of the time (but can’t be the Versed!).

We got to the appointment to hear the final pathology report…more anticipatory tension.  We ended up getting some relatively wonderful news- yes, it’s a low grade cancer, and he’ll need scans to check the rest of his body for other masses- which may or may not have to be removed, depending on if they were causing trouble.  The mass was well-encapsulated, so not just spreading willy-nilly in his neck.  Also great news. The surgeon thought it had been there for 5-10 years, it’s that slow growing. He’ll be seeing an oncologist after the scans to find out what was next (come to find out, he’ll be seeing my oncologist, so I could reassure dad that he’s a good guy).  I got some label for what the description of the mass was, but when I looked up the words online, it was more confusing than helpful; will wait to ask the oncologist 🙂

Dad is going to be OK.  The doc said that this kind of cancer won’t kill dad. It’s quite probable that he’s going to have another 10 years of quality living.  That is a huge answer to prayer.  Yes, one day dad will die. But thankfully, it won’t be anytime soon. ❤

Mom’s Final Days…Please Excuse Me While I Bawl My Eyes Out

This is still rough.  And yes, it’s long.

Mom had been through so much, and survived.  She had been through breast cancer, pre-cancerous tumors in the other breast (so bilateral mastectomies when all was said and done), reconstruction, metastasis to her right lung (so part of her lung removed), and then metastasis to her brain (so removal of a right frontal brain tumor, roughly the size of a golf ball). In the mix, she’d also had a hysterectomy, gallbladder removal,  and ankle surgery (she fell and broke it in the bathroom).   There were countless hospitalizations, radiation, chemotherapy, rehab, and progressive decline.

By March 2003, mom had been cancer free for 17 years.  Considering the number of sites  where she’d had it , that’s pretty amazing.  But the radiation for the brain cancer had left her with dementia.  Bottom line- she was goofy. Her memory was horrible.  She could still answer simple questions, and liked going out on rides in the car. She still had some things she enjoyed (if it came in the form of a candy bar, so much the better).  The day before she ended up in the emergency room in Sun City West, AZ, she had been to an art opening and visited with friends.  She may have had no memory of it later that day, but for the moment, she was happy.

Dad called me one afternoon to tell me something was wrong. She just wasn’t  right. Something had ‘dulled’.  I told him she may have had a seizure and to keep an eye on her. If he saw a seizure, dial 911.  I got a call not long after that from him; they were in the ER at Sun City West Hospital.  She’d had a seizure, vomited, and then been out cold when 911 got there.  He sounded scared, and he never sounded scared with all she’d been through before this.  I told him to call me with any updates.  I was near Chicago, so really depending on his reports.  I felt helpless.  I’m an RN.  I want to help ‘fix’ things when family and friends are sick.

He called me  a while later saying that they couldn’t get blood from her to do tests. Huh? This made no sense; they’d gotten an IV in her and had fluids going. Her urine test showed an infection. With the change in her normal behavior and the positive urine test, that told me she was septic. That is basic, BASIC knowledge in the medical field, especially with older patients.  I told him to tell them that they needed to restrain her, and get the blood. They refused to use restraints even briefly- so did an incomplete workup for their convenience.   We exchanged a few more phone calls (me getting more and more angry), and the bottom line was they were sending her HOME with him on oral antibiotics (well, their rental home).  A partially conscious woman with a urinary tract infection bad enough to make her lose consciousness and seize, and she was being sent home.  I was beyond livid.  Dad was terrified.  It took three people to get her into the car (a clue?), and he had to get help from friends on the other end to get her to bed.  Somewhere along the line, they got the antibiotic pills.

I’ll never believe that the ER people did what they needed to do because mom had dementia and was a ‘no-code’ (but she wasn’t actively dying yet; the no-code was not in effect).  And the hospital was full (like they couldn’t move her to another hospital; she NEEDED IV antibiotics and fluids).  The doctor signed off that she was safe to fly later on… that’s nuts, but she’d be out of his hair.  I’ll never know if it would have made a difference.  I just wanted her to have a chance. As it ended up, dad and I have to look at the one positive: she didn’t end up curled up in a nursing home, not knowing anybody or anything.

Over the next few days, dad came up with various ideas on how to get her home. She was taking the crushed pills in applesauce, and when I’d talked to her, she sounded exhausted but was answering the usual basic questions. She was doing better- but not great.  I didn’t know exactly how badly her body was doing, but I knew I supported dad’s plan to get her home.  Except the plan to drive her home.  I had visions of her dying en route, him being arrested for transporting a body, and mom left in the car in some car impound area…. sometimes an imagination is a bad thing.  I made him  promise me NO DRIVING HOME. He promised.  The final option was for her to fly to O’Hare where a friend of dad’s would drive me in with his van so we could let mom lie down in the back while he drove us back home. Dad would then drive on his own, and be back in about three days.  When I talked to her, I was satisfied that she was ‘back’ enough to be near her baseline.

Well, part of that worked out.  Dad got to Sky Harbor Airport in Phoenix, and the folks at American Airlines said she could fly, but only if he was with her.  He left everything but what he was wearing and got on the plane with her.  A few hours later, they were in Chicago.  I was allowed past the security gates to help get her off of the plane. The folks at American Airlines were wonderful. Her wheelchair was waiting (as were a few others- must have been handicapped day for flying), and the flight attendants said “Oh, you must be J”…. Uh, yeah?  Mom  smiled when she saw me, and we got her into her chair, and headed for the van.

When we got to the van, it’s like mom knew she was near home, and partially collapsed. She didn’t have to fight. I was getting nervous that we wouldn’t make it back home to the hospital where her doctor practiced. (why do they call it ‘practice’?  Shouldn’t they ‘know’ at that point?) I’d brought a blanket to use as a sling to ‘arrange her’ in the back of the van- which dad’s friend helped me do while dad put the wheelchair in the way back part of the van.  Dad was muttering about getting her home to bed, and after a good night’s sleep, she’d be fine.  I looked at dad’s friend, and shook my head no.  We weren’t going home. We were going to the ER.  If I had to get out at some toll booth area, and do some psycho dance, we were NOT going home.

Mom moaned most of the way back to our home town. Somewhere along the way, dad knew that we needed to go to the ER (thank God).  We got her there, moved to a stretcher from the parking lot, and thus began the end.  The ER people knew by looking at her that she was going to be admitted, and when they started an IV, they got blood.  Hear that, Sun City West ‘Hospital’???  It was BAD.  She was septic (duh) and her kidneys were failing. She also had a high blood sugar (she wasn’t diabetic and not on steroids).  She did know the name of her doctor when he came in to see her.  Dad and I stepped out into the hall with him and one of his first questions was about resuscitation measures that we wanted.   We’d discussed this before. If it got to this point, comfort was the primary issue.  It was fine to do fluids and antibiotics in this situation since she was in and out of lucidity, and she theoretically could get better…but her kidneys had never looked this cruddy. She was dying. The blood sugar issue wasn’t helping anything. Her white blood count wasn’t good.  We decided to get her admitted, see her through that and then go home to bed since she was relatively stable.

I’ve seen so many people die I’ve lost count.  That sounds rather cold, but as an RN of 18 years at that point, it just wasn’t possible to remember them all.  I knew the signs. I was seeing some of them, but I was still in and out of denial.  I felt OK going home that night though.  Dad and I told the nurses to call us if anything changed; we lived about 5 minutes away. We went home. She was awake, and tired, but looked ‘settled’.

The next morning, mom was getting the last part of her bath when we first got there, so we waited in the hall for a few minutes.  When we went in, she was awake, and recognized us. She was even drinking some nutritional juice-type drink (not the milky based stuff). She’d had a seizure during the night, and got some IV medication for that, but was doing a bit better. The nurses were wonderful about letting me see her lab work, and her white count was down, mostly from being diluted somewhat from the IV fluids. It was still in the septic range, and her kidney function was still in the ‘not-going-to-get-better’ range.  But she looked a bit perkier.  That was nice for the moment.

At lunch, dad’s friend (who did the van driving the day before) had offered to fly to Phoenix, and get the stuff from the rental house. He then offered to drive the car back to the Chicago area.  Wow.  We all went to the hospital cafeteria to talk about the plans.

We got back to mom’s room about an hour after we’d gone to the cafeteria, and there had been a huge change.  She was beginning to mottle, and was groggy. I’d seen that  mottling SO many times, and that is one of the things that people don’t come back from.  It’s when the circulation starts to shut down, and blotchy dark purplish-blue areas are visible.  Hers had reached her knees.  I ‘knew’.  I told dad that if he wanted to tell her anything he needed to get after it; she was dying. He figured she’d be fine (after all, she always got better, right?), but must have sensed something about my reaction. He asked me to step out for a few minutes. I did.   She was quickly going into a coma, and even at that point, I’m not sure how much she was hearing.  But it wasn’t just for her. I wanted HIM to have closure.  Then I took my turn.

During that afternoon, she went deeper into the coma, and I’d let her nearby brother know earlier that if he wanted to come, it was probably better to do so sooner rather than later; he and my aunt and cousin came.  I was also in contact with mom’s other brother, and only sister.  Mom’s mother was on her way back from  the winter in Florida and with the brother in Tennessee.  They were making plans to drive up here (near Grandma’s home also).  Her sister was looking for a flight ASAP.  A very few family friends also came; we didn’t make it broadly known what was going on.

Mom never regained consciousness, and I decided to spend the night at the hospital. She couldn’t tell anybody what was going on, and I wanted to keep track of how hard her breathing was (or wasn’t), and if she showed any signs of pain.  It was a long night. She did start having some respiratory patterns and sounds that indicated she was having a bit of trouble. I asked for some medication to be ordered, and the nurses were great about contacting the doctor (at about 3:00 a.m.) and getting her something. That helped her breathing ease up.

That was the same night Elizabeth Smart was found alive in Utah.  I’ll never forget that. One family was welcoming someone back home, and I was watching someone leave this earth.  I still remember that so clearly. CNN was all over it.  Mom would moan occasionally, so I’d move the chair closer to the bed and hold her hand and talk to her. I also let her know (whatever she could hear and  understand) that dad and I would be OK. If she wanted to keep fighting and come home, that was great!  We wanted her with us- but if she was just so tired of fighting all of the medical stuff she’d had go on over 20+ years, it was OK to stop, and  let go.  I also let her know that whatever had gone on in our relationship, everything was OK.  We were good.  It’s important to let folks know that the living will be OK, and give them ‘permission’ to be free.

She made it through the night, and remained in a coma.  Dad came back up in the morning, and we both stayed during the day.  Another couple of friends came by, but mostly we answered the phone calls, and just talked to each other.  Mom would only respond to discomfort, so we let her be.  I did agree to the air mattress the night before to make her skin less likely to break down- nobody knew how long this was going to go on (though the mottling is not generally something that happens until near the very end).  By that morning, her blood pressure was so low they needed an ultrasound gizmo to check it- so we didn’t bother with that other than once a shift.  The blood sugar wasn’t going to get fixed- so no point in making her wince and groan with each fingerstick and insulin shot; they weren’t doing much good anyway.  Had she shown signs that she was going to get better, I would have agreed to those things. At that point, it was just pain. She had no periods of even being remotely awake, and the mottling was getting darker.  She needed peace and comfort.

Dad’s friend had made it to Phoenix, and found the obituary mom had written for herself many years earlier, and left in her address book. He faxed it to his wife, who brought it to the hospital for us to have handy.  That was a huge help.

I was so torn about what to do that night. I didn’t want her to be alone, and dad wasn’t up for pulling an all-nighter (understandably at age 70).  I needed to get some rest if I was going to work the next night at 7 p.m.  But I really didn’t want her to be alone. The nurses were great, but it’s not the same as having someone next to the bed, watching.  I finally had to make the decision that I’d have to go home that night so I’d be OK to work the following night.  I hated that.  Dad knew I was struggling with that, but we knew that we could both be at her bedside within 10 minutes of getting a call from her nurse.  And we told the nurses to call for anything.  Anything.

Around 8:30 p.m. or so, her breathing got funky.  Like ‘here it comes’ kind of funky, but also somewhat labored, so I asked for the medication for her breathing to be more comfortable.  The nurse gave it, and it did help. Her breathing became less gravelly. (She didn’t have the ‘rattle’; it was different). At about 8:55 p.m., her breathing became sporadic, and I told dad this was the last pattern I usually saw ‘at the end’.  He was still hanging on to the idea that his partner of 46 years was just going through a rough patch and would recover.     I told him no. This was it.  And it was fast. Really fast when it finally happened.

At 9:00 p.m. my mom took her last breath. She was gone.  Dad and I were on either side of the bed, holding her hands. She wasn’t alone. She didn’t have any more pain or confinement to a body and mind that had been ravaged by disease and the effects of radiation.  She was free.  There was a brief moment a couple of seconds after she died when she looked like she had 30 years earlier.  I don’t know if my fatigue was making my vision wacky, or what- but I saw my mom. The one I’d known before anything was medically wrong with her.  She was at peace. I’d like to think that’s when she saw Heaven, and the Lord she loved so much.  She finally got to see the two baby boys that had each died soon after being born, that she’d never seen in life.  She wasn’t held back by anything.

On March 13, 2003, she was healed.

ROFL at Dementia…or Die Crying

My mom ended up with dementia as a result of radiation for brain cancer. She had the tumor surgically removed, but they wanted to zap the surrounding area a bit to make sure they nuked everything that might cause trouble later.  Seems nuking a brain doesn’t always go without issues.  I was 1200+ miles away, but saw her nearly every Christmas when she and dad came to visit me en route to their winters away from the Midwest. Sometimes the changes were very noticeable.  Mostly, I heard things over the phone; we talked often.

I remember a brief period of time when she knew she was starting to decline. That was terribly sad. She’d tell me “I don’t remember things as well anymore”.  She started labeling things, and even wrote her own obituary; she knew she wouldn’t be able  for much longer. It was heartbreaking. I’d been an RN for many years at that point.  I knew what was coming.  It didn’t really take that long for her memory to be unreliable for current things. She still remembered the past fairly well, so we talked about that.  I’d ask her questions about recent events now and then to assess where she was in the progression of the dementia. If I got too inquisitive, she’d ask to talk to the dog. Literally.  SO, I’d put the phone to the dog’s ear, and get the dog to ‘talk’. That would make mom happy.  She loved her ‘granddogger’.  She thought it was a riot when Hannah (dog) would howl if I said “woof”, or “bow wow”.  That was the cue for showtime. Mom loved that. And it got her out of answering my questions.  The dog was ‘safe’.

Mom went through the usual memory issues, and then her judgement got weird. Normally, before dementia, mom was very polite and had great manners- sometimes even a bit prissy. Not with dementia !  She was generally agreeable, but it was better not to tell her ahead of time if she was going to get out of the car on outings. For a long time, she preferred to sit in the car and wait for dad- doing word find games or reading when she still was able.  But then the dislike for doing anything unfamiliar started. On one Christmas trip to see me, we went to a nice little town known for their antiques, and a little town diner that had great bread pudding (I’m told; I hate the stuff).  SO, Dad and I got her into the wheelchair and got ready to move the chair up the three steps into the restaurant. Other patrons were immediately helping with the door, and before she could get too bent out of shape, she was sitting at the table.  If we would have told her ahead of time, there would have been all sorts of wailing and gnashing of teeth.

She was wheelchair bound except for a few steps, but would order the buffet at a restaurant… like the buffet fairy was going to whisk it tableside for her.  Dad went and got her what he figured she’d like, as many times as she wanted (she wasn’t a big eater, so it wasn’t more than one refill- usually of something starchy).  He and I, with our stable feet, would order the sit-down stuff.  But, mom would be happy.  He did all he could to make every day something that was as pleasant, and pleasing, as possible.  Her last years were one long, huge gift from him.  There weren’t many days when he didn’t at least get her out for a ride, even if just to some random place, and home again.  He didn’t let her just ‘sit’.

Dad took most things in stride. He’d been through a lot with mom, and figured they’d just get through whatever came along.  He called me one day in a moderate panic.  “I don’t know what I’m going to do with your mother”.  Uh oh. She was “MY mother”…. that couldn’t be good.  I asked him what was going on.  Seems that whenever a telemarketer called, she’d say “yes” to whatever they were peddling.  Anything.  Stuff started showing up on the doorstep that was baffling him.  When he asked her, somehow he got an answer that involved some “nice person on the phone”.  Oy.  I suggested unplugging the phone when he ran to the store, or some other brief outing. She couldn’t use the phone any longer, but he didn’t like that idea; he wanted to be able to call her. She wasn’t one to get up on her own, and wasn’t able to wander, so he could get out for up to a couple of hours if he popped in a movie, and helped her to the bathroom before he left; it was their system, and it worked for them.  Anyway, he ended up getting a Tele-Zapper, and calling the various vendors of the stuff that showed up; they were understanding and cancelled any subscriptions, and accepted returns of any items.

And don’t call her during a movie.  If dad had put a movie in for her before stepping out for a bit, and mom got a call, she’d say “I’m watching a movie. I can’t talk.”   Click.  Dial tone.  Manners?  Zippo.  It would be a movie she’d seen about a bazillion times, but it was all semi-new to her.  She especially liked “The Cutting Edge” skating movie.  I used to skate, and she took me to lessons.  The town they lived in was a big winter sports area, and skating had always been part of the local culture.  She used to sew costumes for local skaters when I was little.  She made my little skating skirts when I was four years old.

Thanksgiving often occurred repeatedly in June or July.  Instead of trying to force her memory into reality, Dad went looking for pumpkin pie.  It might take  3-4 stores, but he’d get it, and make her happy.  She’d be clueless a couple of hours later at most, but he didn’t ever want to be ‘mean’ to her.

One trip to some 5-star resort in the Phoenix area got a bit awkward.  After finishing lunch, dad went to wash his hands. When he got back to the table, the head waiter and some guy with a tray of chocolate and bottle of champagne were talking to mom.  What now? The head  guy then congratulated dad on his anniversary (this was in February; their anniversary was in August).  They left the chocolate and champagne (which mom couldn’t have with her seizure medication), and left.  He called me and asked me what he should have done; he didn’t want to embarrass mom.  I told him just don’t show up again at that place for another year. They’d already left the stuff at the table; it wasn’t usable for anyone else at that point.

When the seizures started, dad was dumbfounded at the weird behavior mom displayed. One night he called me all upset. “She’s speaking in tongues again” he half hollered.  Huh?  We’d all gone to the same church since I was a baby, and while they believed in tongues, it wasn’t a holy roller tongue-speaking crowd. Clapping was considered a rousing expression of appreciation.  (Swedes, ya know!). And ‘again’ meant she’d done this before.   He put her on the phone.  She was making NO sense.  He got back on the phone and said she was also taking her clothes off.  MY MOM?  Stripping for the heck of it?  Something was wrong.  I told him I thought she was having temporal lobe or frontal lobe seizures, and he needed to take her to the ER.  I didn’t know how long it would last, and with her history of the right frontal brain tumor, this needed to be checked.  So he got some friends to help load her in the car, and off they went. She was admitted, and started on seizure medication.  The ‘religious’ outbursts stopped.

The dementia progressed, and every Christmas I’d see the latest level of decline.  She could still talk, but her memory was shot.  She transposed past familiar places into the city we would be passing through.  “Where is the Talcott building?”.  Well, gee mom, about 1200 miles northeast of here…. but I couldn’t just say that; she still had feelings, and now and then would feel badly if she was ‘wrong’.

I had decided to move back home to help dad take care of her. He was so adamant about not putting her in a nursing home, even though she was a full-time job.  He wanted to be the one taking care of her.  I didn’t want him to be alone in that.  One of the last things I remember about her  was him calling me to come and “look at your mother”.  When I went upstairs and went to the bedroom where she was sitting in her favorite chair, I had to keep myself from cracking up.  She had put her wig on backwards, and it looked like a fuzzy ski jump hanging over her nose.  I asked her if she was coming or going. She said “It’s really on backwards? He’s not messing with me?”.  I assured her it was indeed on backwards.  She fixed it. Sort of.

They went on their planned 3-month trip to the Phoenix area for the winter. I was staying in their house as I got used to being back in my hometown (a big adjustment from the friendly South).  I had no idea what was going to transpire towards the end of that three month trip.  That’s for another post.  But I will always remember that dealing with dementia is a very difficult process.  Without some humor, it would be soul consuming.