Caregiver

My Life As a Caregiver

August 27, 2007 will forever be etched into my mind. 

Not only was it my Mom’s 62nd birthday, but I had just found out my Mom had Stage IV Lung Cancer (NSCLC) and of course I was beyond devastated.  She assumed it was stage 3 which can still be cured and was so excited by the news.  The surgeon’s nurse said “Your mom didn’t ask what stage it was so I didn’t tell her.  She will find out soon enough.”  

I called my father and we along with my brothers decided to let the doctors tell her when we went for the next appointment.  It was the hardest few days of my life not being able to share my agony and profound devastation with the one person who always understands, my mom.  From my limited knowledge on the subject I was sure her death was imminent.  We would lose her in a few short months. And I knew I wouldn’t be able to handle that. She was one of my best friends.   

Both of my brothers have kids, but I had just gotten married 2 years before. My husband and I were planning on getting a house and to start having kids that year, cause there wasn’t any rush. All of a sudden, all I could think of was “OMG my children will never know the most amazing woman, mother, wife, grandmother and friend that I’ve ever known!!!” And that was just unacceptable to me. But then I remembered two very important things she and my father always taught us kids. Knowledge is Power and you MUST be your own advocate. She was mine when I was in Sloane Kettering at age 12. 

After experiencing pain and other symptoms (and being told by our orthopedist that it was GROWING PAINS), my parents didn’t just ignore my complaints and eventually we ended up at Sloane Kettering. The doctors at Sloane found a tumor in my tibia bone. They were sure it was bone cancer and all the tests showed it had spread. But when they did a biopsy, they found the tumor and removed it instead. After testing and finding the malignancy hadn’t spread as the previous tests had shown, they were shocked and couldn’t explain how 3 different tests could be wrong. So I am a case at the Mayo Clinic for the Unexplained Medical Phenomena. One thing they were sure of though was that if my Mom hadn’t persisted on my behalf I would have definitely lost my leg if not my life. The only scar I have is about an inch and looks like a shaving scar. Crazy right? 

So I went into researcher mode and found a ton of information through some great books, websites, booklets, articles and support groups.  So when she did find out 4 days later, that her cancer could go into remission but would never be cured, I was ready.  I showed her stories of people with her same illness that now have been living for 5, 10 even 15 years with Stage IV Lung Cancer.  She said the greatest gift I gave her that day was HOPE.  

So when my family and friends, especially my Mom and Dad, told me how amazing I was in helping her, it’s only because she taught me how. And because of the Lung Cancer Alliance support board I remembered that doctors are great and statistics are fine, but doctors don’t know everything and statistics are just numbers. You MUST HAVE FAITH!!!!
 
If you believe you’ll get better and fight for it, I think you can definitely beat the odds for a lot longer than if u just give up.

And also EVERYONE at Memorial Sloane Kettering Cancer Hospital in NYC was so truly helpful throughout everything from her initial diagnosis to even making sure the insurance company pays the bills.  It’s about $10,000 just for each chemo treatment.  Crazy, right??

We thought about going to the Sloane Kettering facility @ one of the Long Island facilities, but heard mixed reviews.  I pulled aside the head nurse of the Chief of Thoracic Surgery at Sloane in NYC and asked her if it was her mom would she trek all the way in to the city or go the easy route and stay closer to home?  She said without a doubt, she’d trek to the city to give her mom the best care with the best specialists.  My parents, brothers and I all agreed and we’d take turns going in whenever possible. My Aunts, Uncles and cousins helped out too.   But for the most part it was me, my amazing hubby and my parents.  

It was tough because she broke her ankle and was in bed with a cast, got shingles, pneumonia and pulmonary embolisms. We almost lost her twice that year. My Dad and I did pretty well most days, but it was hard.  When we got overwhelmed, I tried to remember how my Mom must feel.  She was always so strong and independent.  I cannot fathom how out of control she must have felt.

It really does give you an amazing feeling helping others, especially loved ones.  I finally understand why people donate so much of their time to great causes.  It feels great to give back.  You almost get more out of it than those you help.  

A year since Mom’s diagnosis and Mom was doing great!!! It had been a rough year, but all 3 of her tumors in lungs were GONE!!!! She did have a spot on her liver, so they had put her on Tarceva, which they thought would shrink it. After that it was a runaway train that couldn’t be stopped.

It was a big shock and there was a lot of ups and downs.  But there was also a lot of love and laughter. My Mom has been gone for over 6 years. I am so glad that I had all the time with her that I did. We knew she didn’t have years to live, so we made each day count. I miss her so very much but I’m happy she’s at peace and no longer sick.

I am so lucky to have had her as a Mom. She wasn’t just my heart, she was my best friend. I miss her smell, her adorable little face, her smile and her laughter.

Feeling the Love

Thank you for all the kind words, support, love, prayers and encouragement. It means the world to me and helps my spirit more than I can ever express.

I’m glad my Mom-in-law and I have gotten so close over the past few years. She’s German and strong, so she can seem cold but she’s not. She’s loving and kind. I have definitely made her more affectionate with all my kisses, hugs and I love yous lol.

Until we get the pathology report back, we won’t know for sure but they think it’s lymphoma that is also in liver and chest. Her 4 kids are all hoping it’s stage 3 not stage 4, which anyone who has been through this before or has medical training knows is the difference between curable n terminal. I remember having the same hope. So while I am 99.9% certain it’s stage 4, I am not saying that to anyone except my family and friends.

For me, the biggest problem is the medical care she is receiving. She is in the hospital where my sis-in-law is a nurse. It is a decent heart hospital but personally I wouldn’t send anyone there, especially not my Mom. And they are not experts in cancer or pain. The nurses care but they are not equipped to handle severe cancer pain.

My Mom’s cancer went from her lungs to her liver, brain then bones. She had a huge brain tumor, pneumonia, pulmonary embolism, shingles and a bunch of other complications during the almost 2 years she was sick. In all that time, she was never made to suffer in the amount of pain my MIL suffered last night. I never allowed it to happen. I was there day and night because that’s how she was and how she raised me.

Finally at 2 am, after twice having to witness her screaming in pain and waiting almost an hour for pain meds, I stood over the nurse while she got the dr on the phone. I apologized, grabbed the phone and got him to agree to switch from oxycodone pill every 6 hours as needed to morphine via iv every 4 hours. I made him promise they would not wait til the pain got so bad that she was screaming. He apologized and said of course, he would take care of it. I was just happy I didn’t need to threaten hospital staff and get thrown out.

Today, she was sleeping and not in pain. My husband is staying tonight and hopefully Monday they will have answers for us when pathology report comes back. I would have moved her to a better facility today if she were my Mom.

But it’s not my call and after last night, I am relaxing tonight. She has 4 children and they all have to step up and be there for her. It sucks that they have no time to adapt but our lives are not important right now. She matters most right now.

Thank you again for all the love and well wishes. Hugs to all.

Smoke em if you got em

My mother-in-law and father-in-law worked out 5 days a week, eat right, don’t smoke and rarely drink. They did everything we are told by doctors, the news and society that we should do to live a long, healthy and happy life.  My father-in-law died 2 years ago at age 79, just 26 days after being diagnosed with pancreatic cancer.  He was the same weight that he had been since high school and in better physical condition than even my husband.

Since then my mother-in-law has obviously struggled, as she had just retired less than a year before.  They had 3 trips already booked when he was diagnosed.  But she is a strong, independent woman and she would not just give up and wither away.  She took a month off and then started working out again 5 days a week.  She joined a bereavement support group and got elected to her local library board.  I can only imagine how hard it has been since she lost her husband of 52 years.

In late July she walked around on a broken hip for 2 weeks before going to the orthopedist because she thought it was a pulled groin muscle from working out too hard.  My father-in-law used to say she didn’t work out hard enough, but he was a hard ass lol. She had hip replacement surgery a month ago and was healing beautifully. She exceeded all expectations and was looking forward to getting back to her life. Until last Thursday when she began to feel weak and exhausted. By Saturday she could barely get out of bed and she had aged 10 years seemingly overnight.  My husband and I were there all day Saturday and Sunday.  I made her soup as she had no appetite and didn’t even have the energy to leave her bed.  Sunday morning my sister-in-law came over, thought my MIL was in a depression and said she was taking her to the hospital.  My MIL refused and said she needed rest. Well even the difference between 9pm Saturday night and noon on Sunday was dramatic.  Her speech was slurred and her motor functions were affected as well.  I thought she might have had a stroke.  So I talked to her throughout the day and got her to agree to go to the hospital the next morning.  I said “T you are slurring your words like a drunk!  You are not depressed, there is something medically wrong and we need to figure it out so you can get well.”

When she went to the hospital Monday morning she had only half the blood volume we normally do and her liver enzymes were high.  They gave her a bag of blood and there was no increase in her volume.  After a colonoscopy and an endoscopy came back clean, we were extremely worried. Today they did a liver biopsy, an MRI of the liver and a Pet scan.  While we won’t know definitively until we get back the pathology report, there are masses in the liver.  They don’t think it originated there, so almost certainly it’s stage iv.  I am leaving work and spending the night with her in the hospital.  No one else was available tonight and like I said before, I’m a pro.  I can count on both hands the amount of people I would sleep in a hospital recliner chair for and my MIL is one of them.

So I am not in a very hopeful and joyous mood right now.  I am bitter and so angry at so many things I feel like my head is going to explode.  I have 30 minutes to get myself together, quit blubbering and paste on a smile.  She’s a very intelligent woman and she doesn’t know anything yet.  Please say prayers and thank you.

Date Night Nixed

My Mother-in-law is a pretty great person.  She was a stay at home Mom until going back to school to get her Bachelor’s Degree.  She then continued on to get her Masters, eventually becoming a Dean at a major university.  She’s strong, independent and has always been really good to me.

A month ago she had hip replacement surgery after walking around on a broken hip for two weeks because she thought she had pulled a groin muscle.  She was doing really well until a few days ago when she became extremely weak and tired.  We spent all weekend with her, making sure she ate and stayed hydrated.  My sister-in-law is a nurse and seemed to think she was depressed and that’s why she wouldn’t get out of bed.  I said she might know medicine, but I am the expert on depression lol. And depression doesn’t slow speech and motor functions as dramatically as she was experiencing.  She wouldn’t let her daughter take her to the hospital on Sunday, so we stayed all day into the night and I spoke to her a few times about how something was medically wrong and she needed to go to the hospital.  I said she’s only depressed cause she feels so sick and tired.

This morning she willingly let my sister-in-law take her to the hospital, saying I had talked to her and make her realize she needed to go.  She said I’m really good at caretaking and she appreciated all my help.  Turns out she only had 1/2 the amount of blood we’re supposed to have.  She was on blood thinners and they had given her a drug celebrex as an anti-inflammatory.  They think between the two, it caused a bleed in stomach. So they gave her a transfusion and tomorrow morning they will do an endoscopy to find the bleed and cauterize it.  She didn’t get into a room until about 9:30pm and my sister-in-law has to work in the am, so I went up to the emergency room to wait with her while they got a room for her.  After all the times with my Mom, if waiting around in emergency rooms was an olympic sport, I’d be a gold medalist lol.

Well as of this morning her blood count didn’t increase at all, even with the transfusion. They put the endoscopy on hold and tomorrow will do both an endoscopy and colonoscopy at the same time. This way she only has to be sedated once. But now she has to prep for that oh so much fun colonoscopy, complete with laxative drinks and enemas. Fun times so I’m letting her 4 children, my hubby, his sister and 2 brothers take the lead today lol.

At least they gave her some zanax to calm her as she is very agitated which is not like her at all. Last night she was picking at the dozens of wires coming thru her hospital gown from all the cardiac monitors. Frankly I think almost everyone laying uncomfortable in a hospital bed should be given something to relax them. Why the hell not right?

Oh yes I almost forgot, so unfortunately the Saturday night date of dinner and a movie my H had planned had to be put on hold. Actually we were so tired and worried when we got home that night, we didn’t even remember til we got into bed. He was worried about his Mom and I was too. I also had the added bonus of remembering all the days n nights I had done almost the same exact things for my Mom. And of course it made me miss her beautiful smiling face. I’m a good caretaker, not because I’m Mother Theresa, but because unfortunately I have had quite a bit of practice. Thankfully I had off from work for the Jewish holiday 🙂

My Life with Depression (Part 1)

Gosh this is hard to write.  Now I know why I have been avoiding it for so long.

I had always been a pretty normal, happy-go-lucky kid.  Then when I was 18, I had a root canal go terribly wrong.  The infection was so severe, my whole face blew up and was unrecognizable.  So 2 days before I was supposed to start college (a great school about 3 hours away where I was on academic scholarship) I ended up in the ER. Then it was back home for 2 weeks of heavy antibiotics, painkillers and rest.

A few months later, I noticed I was sleeping and crying a LOT.  I thought maybe it was a bad case of homesickness or PMS.  But I loved college and was having a ball.  My classes were great, I had a good  group of friends, and I was dating this really hot and sweet junior.

Things got serious very quickly.  I couldn’t get out of bed and I was just in so much pain deep inside.  It was like a black hole of despair was swallowing me up.  What made it worse was that there was absolutely no reason for the sadness and pain.  I had no idea what was happening to me and I was quickly losing all hope.  I was having horrific thoughts and nothing worked.  Everyone was really kind and tried to help, but there was nothing anyone could do.

I  had told my Mom but like me she figured it was just normal homesickness.  I finally decided I had to tell my parents when they came up for Parents Weekend. I will never forget sitting in this little cafe, just my Mom, my Dad and I.  Of course I started sobbing and shaking, cause that’s all I did during that time.  My Mom hugged me and my Dad said, “Are you expecting?”  I stopped crying and as one my Mom and I turned to him, utterly perplexed, and at the same time said, “Expecting what?”  He thought I was pregnant and wanted me to know that they would always support me, no matter what. But no, I wasn’t even having sex. LOL

I went home that weekend and my Mom took me to our family doctor.  After a bunch of tests and talking, I was eventually diagnosed with severe clinical depression caused by a chemical imbalance.  Say WHAT!?!?!?!   So does that mean I can’t drink at parties I asked.  I really had no idea how much my whole life had just changed.

Depression runs in my Mom’s family but I am the only lucky lottery winner in my immediate family.  Yay me LOL.  They think between the infection, all the antibiotics, and painkillers, it triggered a genetic predisposition.  Who knows?

All I know is I had to leave school and was basically a human vegetable for the next 6 months.