Tuesday, December 31, 2013

The Will to Live

I have to admit, I had been putting off another blog post thinking that there would be one last amazing story. But I should have known better. This is Mom we are talking about; a survivor, a widow, a miracle. This is a woman every week who never missed a hair appointment in order to get her hair done in that perfect bouffant style —half can of hairspray for the extra hold.

Fortunately we got through Christmas Eve, Christmas Day and Blake's Birthday without any major events. There have been small peaks and lots of valley's. The valley's consist of shut eyes, little discernible talking, shallow breaths and lots of hand holding. The peaks have brought more miraculous memories and words. Christmas Eve was a valley. I decided for my kids sake since I missed the family get together on Thanksgiving, I needed to attend our annual Christmas Eve celebration where we all take a part and sing the twelve days of Christmas. Christmas day I made my daily morning call to check in on her, and her care giver said to rush over because she was talking again. My family was just about ready to go downstairs and see what Santa brought — but Shawn and the kids heard my conversation with the care giver and selflessly said "Go! We'll wait for you". And so, I was able to have another amazing memory to fill my wonderbox that morning. It was the best gift I could have ever wished for. Mom very clearly told me "I love you more than you know".

Honestly I considered the title for my post "Groundhog's Day". Like Bill Murray, I feel  like I have been stuck in one place and every day is exactly the same. Every night before I shut my eyes I say the lord's prayer and finish it off by asking god to escort my Mom to heaven. Then every day I wake up realizing I did not receive a phone call during the night about her passing and realize I have another day to live in this depressing but magical state of life.

Everyone has asked if I have given her permission to die. I not only have given her permission but I go there multiple times a day to help plan her exit. Not because I want her to go but because she needs to go. She has not eaten in more than two weeks. She is so weak. My Brother and Sister-in Law were both saying yesterday that the opposite has happened; now her mind is sharp when she is present and her poor little body, physically just can't keep going. Just yesterday during another peak she said "I have had an amazing life. I just thought I had longer to enjoy it". She asked us "What would Fonie do?"

Here is what we have said to her, hoping one of these statements will help her to feel at peace:
-"There is a party waiting for you in heaven. There is a table full of food. Lot's of chocolate. All the cocktails you can order. And everyone you love is there. Daddy, Aunt Fon, your Mom, Aunt Bun, Jenny, Char..."
-Let's get on your favorite outfit, your jewelry, your sun glasses and scarf and I'll send you off in your convertible with the top down"
-"You are the best Mom anyone could ever wish for. You are beautiful, strong and have taught us everything we need in life to be ok without you. You have done your job! An amazing job".
-"We will meet again. One day you will have a party waiting for us in heaven".
-"I'm ok. I will be ok"

I have come to the conclusion, this is not my story. That is why I created this blog in the first place. This is her story. Her life. Her journey. I am just the story teller. Trying to make sense of something that I honestly have no control over. That my friends, is the lesson here. Who am I to tell her when she needs to go? It is clear she has the will to live. She will be alive down to the last breath. Obviously she wants to see 2014. Who wouldn't? She knows how wonderful life is. She is not quite ready to see yet how wonderful life after life is too.

Maybe it's time to make another hair appointment for her? The story continues.

Sunday, December 22, 2013

Eat. Pray. Love.

I would agree with the best selling author Elizabeth Gilbert that these three sensations are what makes life worth living — or perhaps fills us with pleasure beyond anything else.

Mom has loved to eat her entire life. Luckily for her, with her 5'9" height, slender shape, and legs that go on for days, she has never had to worry much about watching what she eats. As you all know one of her favorite things to do this past year was eat; "let's do lunch!". That is why it is sad to say, Mom has finally decided she is no longer hungry. Not even the temptation of her favorite meal — a cheeseburger and chocolate shake is getting an eyebrow raise.

The hospice staff and caregivers say we are moving in to the last phase of "active dying". This is the phase I have googled numerous times hoping to read something that is a different outcome.

Mom is spiritual. She is a member of the Congregational Church in downtown San Mateo. In fact, her and Dad got married there. When it came time to choosing a place for my wedding, there was no question. Shawn and I also got married there. And that church baptized me, my brother, Shawn and all my kids. Mom up until a year ago this month, had volunteered every Friday religiously in the church office helping to type up the Sunday bulletin. She is a wiz at shorthand and a super fast typer from her days being a legal secretary for all the judges in the San Mateo courthouse. You remember how spiritual she became the day the Minister visited our house a few weeks back.

I think the "Pray" part is covered not only by her, but by all of you. All the friends and family who have reached out online, by phone, by cards and physically visited. Mom and I are blessed by the people we surround ourselves with.

Love. Is there even a question? Friday was the last day that Mom was really chatty. Once again she had a lot to say. I recorded a few things that I think will bring a smile to your faces:

- It will be nice to finally get out of the house
- I see little valentines all over the place
- I need your room number in case I need to contact you
- I hope we don't have more than two blocks to go?
- Merci

These random words I don't think are random at all. I am convinced they are all things that she is thinking about and seeing on her journey.

Yesterday may have been the last day she could physically "see" us. They say sight goes before sound. Shawn and the kids came over.

She had woken up from a pretty deep state when we entered her room. It was such a surprise to see her baby blues again. She intently stared at each and everyone of us.  It was if she was talking to each of us without saying a word. Tyler. Then Chase. Back to Blake and over to Shawn. And always back to me. Shawn even cracked a joke that she was having a staring contest. I knew she was taking it all in perhaps one last time. I told her to take pictures with her eyes. I knew she knew what I meant.

Love filled the room.

Love will physically visit her today and everyday until Mom peacefully decides it's time for her to go on and "do lunch" again. As we all know — she is the one in charge.

Tuesday, December 17, 2013

Fear the Beard

Mom is stable. Obviously she is the "fifty percent more" that the Doctor described 3 weeks ago when she said "some can live less than two weeks and some can live more than two weeks". We continue to visit her multiple times a day and let her just talk. The conversations go from present to past to lala land. Visits can be quite entertaining.

Over the weekend she wanted to make sure she was dressed. She told us she had been talking with Fonnie and looking at photos. She said she wanted to wear white. We are told she is still in the active dying process, but is "stable" for now. So we take that to mean, this could go on for some time or the tsunami could hit at any second. Maybe it's time to hire the Long Island Medium?

The boys came by and Mom wanted to make sure she was near a window. She told them to not leave any lights on, turn down the heat and not let anyone else in. She wanted to make sure they stayed by her porch. The boys thought it was her way of making sure her house was secure in her journey.

Today the visit with Ty and I was all about caps and beards. Ty had a cute stocking cap on. Mom was quite intrigued with it. She told us she thought Ty should have one in every color. She also told Ty she should travel and have fun. Ty of course told me that meant she should study abroad and perhaps continue to just live care-free....uh huh Ty, let's not get too carried away....

Mom asked us "To look out for her Mom who was going to drive by any second". She also told us to watch out for all the animals that were running around. "You mean the squirrels on your lawn?" "No, I mean the ones with tails in the room". "Are they mice?" "Well yes, and mice don't bother me, but if you see a cat or a dog, let me know". Uh ok, I will...

Her caretaker was wearing a "fear the beard" Giants shirt so Mom wanted to get a photo with her. By the end of the visit Mom said she was hungry and wanted to have a "beard" for lunch. I told her I needed to go back to work so she ended my stay with some great advice "If you get fired, tell them it's because someone is in the ground". Good to know. I am my own boss, so I certainly will pass along that information. Today we left laughing ear to ear. The story continues.

Thursday, December 12, 2013

We Make a Great Pair

Mom sat up. Exactly two weeks from the day we brought her home.

I was at work Tuesday and the caregiver called in a panick. At first I thought something horrible happened to Mom. Then I really listened to what she said, "Your Mother is up! She is up! She is sitting here on the edge of the bed waiting for you to see her!" I dropped everything and rushed out the door.

I ran into her room and found her very peacefully sitting up in her blue hospital gown, legs crossed, holding a kleenex. "Mom, this is a miracle!". Her response "Yes, I am a miracle". I asked her what she wanted to do and she told me to take her picture and tell everyone. I immediately sent it out through text to my family. They all replied within seconds with astonishing responses.

She went on and crossed her legs, asked to look at her note pad next to her phone and have her glasses put on. Being able to share this moment was absolutely fun. Really fun.

After about 45 minutes we convinced her to lay back down. "Back away. Be quiet". It was on her own terms. She continues to want to be in charge. I ended up staying for a few hours. Her speech went back to being compromised but she grabbed my hands and continued to give me some words of wisdom but every few minutes commented on how she loved my jacket and "I looked so cute". She went on to tell me that she thought she had more time with me, but since it would be cut short that I should carry on without her. She told me "We make a great pair". That really got the tears rolling on my end.

She also told me the following in this exact order (I was feverishly taking notes on my iphone):

-Take care of my kids
-Take care of myself
-Take her place in the family
-Do my best
-Always dress nice

Today I received another panicked call. This time Mom had made it to a wheelchair. I dropped everything and rushed over.

I found her peeking out her bedroom window. She said she was looking at her lawn, the trees and her car in the driveway. She said people were coming for her and then she looked at me and clearly said "People will be dancing in the streets really soon".

I convinced her I could wheel her out into her den to see her roses in the backyard. She said "look, my apple tree. I want to eat a big red apple! Wait are those bugs? Is this my house? Fonnie is talking to me. Did you hear her?" Her thoughts went from clarity to hallucinations to heaven.

Ironically Fonnie tragically passed away on December 18th. Could she be waiting until next Wednesday?

As we wheeled her back to her room, she passed her living room and said "Oh, wait, I need to sort through my mail". I felt like she was making her last rounds. Perhaps making sure everything was in the perfect place. The story continues.

Tuesday, December 10, 2013

The Wonder Box

People have told me that death can be beautiful. I was not buying it at all — until Sunday.

We decided to have Mom's Minister over to say a prayer. We had about 3 back to back days with not a lot of signs that things were going to improve. Her speech was impaired and she had been sleeping most of the days.

I brought Chase and Blake with me. She was sitting up in bed, lipstick on, crying tears of joy. I was shocked. She had not cried in months. This was a different sign. A spiritual, possibly accepting sign perhaps? These were not sad tears, but tears of joy.

She greeted us with a big, loud clear "Hiya". The boys both giggled and looked at me like I was crazy to have thought she was going anywhere, anytime soon. She went on to tell us that "today was a party — the best day she could ever have planned". I quickly grabbed the opportunity to have her talk to Tyler up in Eugene since their last "good-bye" was not anything really special. Clear as day she said to Ty, "What are you doing?" I could hear Ty reply "I am at a coffee house studying for finals. What are you doing Grandma?" Mom replied as clear as the blue sky "I am going to heaven". She then went on to ask Chase "Will you be my cloud?"

I could not believe what I was seeing and hearing. The Minister arrived and the tears of joy and love and admiration continued. She grabbed the care givers face and told her how appreciative she was of her taking care of her. She turned to me and said I looked more beautiful than I ever had (keep in mind I had not showered for two days and had a stocking cap on)...well, ok...

It was hard to leave her bedside. She physically grabbed my hands that day and held them tight and looked me straight in my eyes with her gorgeous baby blues.

I reluctantly had to go. I took Chase to a meeting and then we both watched Blake play basketball. Blake was also on fire that day. He had a game like no other. We went out to dinner to celebrate him and then I returned to Mom's thinking I would arrive and she would be fast asleep after such a big emotional day.

"You're back!" she said. She was still sitting up in bed. "Yes I'm back. You'll never guess the kind of game Blake just had. Guess how many baskets he scored Mom?" She looked off in the distance then very carefully and clearly yelled with lifted arms "20!". I was flabbergasted.

How did she know he scored 20 baskets? I mean, that is a pretty high and random number. "How did you know?" I asked. Mom looked straight into my eyes and grabbed my hands "Because I am a woman of wonders. You see I am collecting all of these wonderful family memories in a wonder box to give to you". I was speechless just trying to process all of it. Then without a break in her sentence she went on to say "But me, I am building myself an escape box. And I am going to escape right through the top when no one notices" and she lifted up her finger straight above her head as if she was showing me how she would escape.

She grabbed my face and grabbed my shoulders and gave me a kiss smack on the lips like no other and said "I love you. I love you more than anything". And then said "Do you see that little girl?". "Uh...no". "There is a little girl holding a balloon waiting for me." and then she gave a huge smile that never left her face.

I can honestly say Sunday was magical, perhaps even beautiful like people describe. The story continues.

Thursday, December 5, 2013

Waiting for the Tsunami

Music continues to be the therapy. Last night I brought the boys to see Mom. I asked if she wanted to hear some music and she quickly said "Elvis". Sure enough I tapped my 50's radio icon on itunes and the first song was an Elvis one. Mom likes to hold my phone and look at the screen. She says she likes to see the pictures of the people singing the song. The boys got to see her yesterday when she was the most alert, so I was thankful for that.

This "active dying" process is like a marathon. When I ran the San Francisco nike for the first time and approached the visual of having to run all the way around lake merced at mile 20, I shut down. I told my running girls "I need to stop talking and dig deep to get around this lake". My girlfriends totally accepted my response. I focused on the goal, got introspective and got through it.

The past few days I've laughed. I've been mad. I've cried. It's like waiting for a Tsunami. I know it's coming. I know it will be devastating. I just don't know when it will hit.

Monday, December 2, 2013


Some fans to this day think Elvis is alive.

When I came home from school in 7th grade, Mom was not home. Instead Aunt Fon was there. She told me that Mom was not feeling well and she had to spend the night in the hospital. That seemed like a reasonable response. I asked if I could speak with her. "Sure" she replied. I called Mom and spoke with her. Thinking back she sounded weak but I don't recall anything out of the ordinary.

Days turned in to a few weeks. I had not had another conversation with her. I can remember asking if I could talk to her, but my Aunt always had some good response to divert my attention to something else.   I came wheeling up the porch one afternoon. Aunt Fon was waiting for me and my Brother in the  living room along with my other Aunt and Uncle. They asked us to sit down.

They went on to say that Mom was still in the hospital but she had slipped into a coma the day after we last spoke. Mom's last words to Aunt Fon were, "Whatever you do, do not tell the kids". Now two weeks later the doctor's told my Aunt that Mom was most likely not going to wake up. He told her it was time to tell the kids.

I was devastated. I was angry. I was sad.

I took my Mom's favorite flower in and lay it on her pillow. I gave her a kiss and said I love her. Then I got as far away as I could from the hospital.

My brother and I took the next flight up to Washington. My cousin was getting married in less than a month so I think the family thought it was best to go there and take our mind off Mom.

I have told you Mom is a miracle. Shawn and the kids are the first to say she is a cat with nine lives. Mom started to hum and whistle. The doctors were astounded. She ended up completely coming out of the coma. Her kidney's failed. She did the dialysis. She had to learn to talk, play cards, walk again. But she fully recovered. Turns out Mom had cancer and was hiding it from myself and my brother, until she got so sick she had to call Aunt Fon. Just like her — privately battle cancer so she did not impose on either of us. I tell people this story and they just shake their heads in amazement.

I knew Mom would not leave us on Thanksgiving — she would never want to leave that sad memory on a holiday. Friday however, was another story.

I have a routine. I come over every morning to help change her and see how she is. Friday she was not eating or drinking. She told me she spoke to her Mom that morning for quite a while. I was sure this would be her last day with us. She was fast asleep. Until I found a 40's radio station on itunes.

Music is magical. An old Elvis song randomly served up. I looked at Mom and all of a sudden her shoulders started to move, her head bopped around and Veronica and I couldn't help ourselves but stand up and start dancing with her. We both grabbed one of her hands and Mom perked up like she was ready to boogie on out to the dance floor. She asked us to remove her cover, take off her socks and wiggle her toes. It was a glorious few minutes. I will never forget it.

Now, almost a week later from getting the "hours, days or weeks" news, Mom is rallying again. Another miracle? Who knows, maybe Elvis is still alive too.

Thursday, November 28, 2013

Hours. Days. Weeks.

My wedding day. My kid's birth. An encore at a Cold Play concert. A winning play in Hillsdale's CCS softball game. Last year's fireworks finale boat side in Tahoe. I have experienced all these moments in life that have been both life changing and bittersweet but never before have I seen death come upon us.

Today is a special day of Thanks. And I am thankful to spend the entire day with Mom — holding her hand through this journey. Don't read today's post and be sad. Be thankful that you are spending another day with your family, building precious memories.

Mom came home Tuesday. This time it was different. I didn't get to drive her home. She arrived on a gurney by transport. She did not say a word and did not open her eyes. When they lifted her across the door threshold I said "Mom, you are home!" and we all got an "ok" sign. I knew that meant she was happy.

Tuesday was tough. There were lots of visitors that day. Two deliveries from the pharmacy with the hospice kit and extra morphine. Two deliveries from the medical supply company; one with a wheel chair and bedside table, one with oxygen and diapers. One visit from the hospice nurse Susan.

When Veronica got the call at another client's house that Mom would be coming home, she rushed at the chance to come over and nurse her back to health. Veronica and I were a tag team that night. I will forever be grateful to her.

Wednesday I met Mom's new doctor at the house. Yes, after 11 months of having a primary who was totally not involved, we had a doctor who personally was coming to the house. I had decided I needed to ask the tough question; how much time does Mom have?

The doctor went straight into Mom's room. She immediately grabbed Mom's hand, something no doctor had ever done through this process and just watched her. She told Veronica to stop all medications other than the two that are prescribed for pain. I asked her if we could speak out in the living room.

We chatted for quite a while. Honestly it is a blur. She very compassionately went through Mom's case and said that she just has had "one too many hits". She talked me through the active stages of death and I did listen to her every word, but I can not tell you anything she said. The only thing I clearly heard was that "Mom has hours, days, possibly weeks". My heart sank.

This was the first time her fate was very clearly articulated. I asked her if I should have my kids come and see her because I told her how Mom did not allow my brother and I to be involved in Daddy's death, nor were we allowed to say goodbye at the funeral. I told her about this blog and the desire to allow my kids to have some kind of closer with their Grandma. She gave me some comforting advice. She too did not get to say goodbye to her grandparents. She said "death is really a hot topic right now. With no disrespect, people are talking about it. This is not our parent's generation when everything was private. Read the NY Times or go online on facebook or yahoo. Our generation is involved. We are facing death and allowing our kids to see it in order to hopefully one day allow them to have the strength and knowledge to take care of us one day. So you should absolutely rush them over here and let them have their peace". And so I did.

Chase wanted to know what her favorite number was? He wanted to request wearing it on his jersey this soccer season. Mom told Chase "She loves his hair and thinks he is a looker". Mom just wanted to look at Blake, and she asked him for a hug and kiss and told him to sit closer to her. Tyler thankfully flew in to town Tuesday night. She wore a gorgeous scarf Mom had hand knitted for her last Christmas. Mom told Ty how much time it took to knit it and told her she could do anything she wanted. Shawn came in with a lightbulb. He had searched high and low for a bulb that would fit into a lamp that Mom probably bought when her and Daddy got married. Mom loves having Shawn and my Brother around to fix things. She loves Shawn dearly.

Mom told my Brother that he could fix her stairway. She has no stairway. I was hanging on to her every word; looking at signs of her closeness with god. She also told us "she was leaving on a jet plane". She talked about packing and at times her arms were lifting and moving as her eyes were shut. I would ask her what she was doing and get responses like "I'm sorting through some bags" or "I'm working on a few things". It is clear to me she is very busy wrapping things up. She would never leave any loose ends for us to have to clean up.

She is in and out of it due to the strong meds and her lack of eating. But there are moments of full clarity and that is why I need to hold her hand and observe. I can actually equate to watching my kids as a newborn. You sit and watch and wait for any small sign of a smile, a gesture. The pure joy of staring at this person you have created.

For the first time through this whole journey she asked my Brother and I very clearly, "am I dying?" I paused. I looked at him. Do I say no? What will he say?  Do we lie and appease her to lower her anxiety? "Yes" we both responded, "Yes". Mom didn't skip a beat, "well, I have had an amazing life".

I stayed by Mom's bedside until late last night. Veronica made her some home made soup and got her to eat a few spoonfuls. Who knows, maybe she is planning on staying around for Thanksgiving?
The journey continues. Happy Thanksgiving my friends. Enjoy this special day.

Monday, November 25, 2013

This Hotel Has Great Service.

I wish I was blogging about our weekend. I'd love to fantasize about turning this into a trip advisor post. Or a story about helping your high schooler choose the right college. Or maybe talk about why the Oregon Ducks got obliterated by the Wildcats? Instead I'll give you an update on my Mom.

She went in for surgery late Friday night. The doctors all agreed that the only thing that could save her life was to try and unblock the bowel (so she could eat again). And they all agreed she was getting weaker, so they needed to strike while the iron was hot. I had mixed emotions because my Brother and Mom had said to continue on with our plans and visit UofA.

I stopped by the hospital on my way to the airport to say one last "goodbye". Mom was being evaluated by her kidney doctor. I came in as she was saying "This hotel has great service". He gave me quite the smile! She was more confused then ever. On one hand she would say to me "I have more living to do". Then she would say "I can't take any more of this Betsy. I just want to go home". I was a mess. I even had the doctor in tears when he left the room.

We convinced her that it would be best to take off her rings during surgery. She asked that I wear them around my neck close to my heart but she was apprehensive to take them off since one is her original diamond from her wedding ring and the other is a vintage ring her Grandma and Mom handed down. Shawn bought me a beautiful a cross last year when this journey began — so it was fitting to add the rings to that necklace for my weekend away. It was a way to keep her close to me.

Chase and I were on pins and needles. He loves to root for the under dog. He thinks Grandma is invincible. I received a call at 11:30pm between our flight from Los Angeles to Tucson. Mom was finally going in to surgery. The whole flight to Tucson Chase and I stared out the window. I was looking for a sign.

2:10am we got the call. She was awake and they had unblocked her bowel! Miracle #7 in the works. The boys and I were jumping and high-fiving in the airport while Shawn was getting the rent a car. It was bittersweet.

Saturday we called her. She was tired but pretty chipper. She talked to Blake forever. Then about 5pm we got a call from the nurse asking if Mom could talk to Blake again. She said Mom thought Blake was lost. When I got on to say hi she said "I hope you know where Blake is? I can't find him so I have 2 barber shops out looking for him". "Uh, ok Mom, I'll keep him close by"...

Next steps. We meet with the Palliative Care physician today to see when Mom can come home. They also think they have found a cyst on her ovary that might be cancerous. Honestly that news is awful, but at this point, as long as it is not going to interfere with her having a little bit more time with us, we can handle it. And so we prepare for a very different but very thankful Holiday this week.

Friday, November 22, 2013

Today is Shitty

I'm not going to sugar coat this one. I'm literally at work in tears but I'm on a conference call, so no one knows. This is my life. Keep business, business. And personal stuff out of business. Clients are human but when you are a vendor like we are, deadlines are deadlines.

Mom has not left the hospital since Wednesday night. Looking back I am so glad I challenged the ER Doctors. Turns out her condition is not actually what triggered this new problem. She has a blocked bowel. Yes, a blocked pooper. "You mean to tell me after this whole journey and horrible kidney diagnosis, she could die from a blocked bowel?". Today is shitty. Or in Mom's case not shitty.

My brother just called. Mom has not been able to eat since Tuesday. Mom is getting an IV. So for now, she is getting nutrition. They also are looking at a cyst on her ovary. This cyst has been there for a while. It is only being looked at closer because I called Mom's new doctor. This new doctor is a specialist in Palliative Care and Geriatrics Care. Turns out she shares offices with the Doctor who helped us "stop chasing magic fairy dust". She has been more helpful and definitive in the last 24 hours then the answers we have received from multiple specialists for the past year. And get this people. She told my brother today "SHE HAS DEMENTIA". So screw you Mr. "Apple. Hammer. Penny!"

I digress. Back to Mom. If we can not get her bowel unblocked with non evasive procedures then Mom will only have an option for surgery. And that option is bleak. Mom most likely will not be able to make it through surgery. So my brother (the doctor) told me to not cancel plans this weekend. He said go to Tucson as scheduled, show Chase UofA, enjoy the big game because Mom is not going anywhere this weekend. She can survive on the IV. We will meet Monday and weigh the next steps.

Mom last night told me, "Go have fun. Don't come here every day. Come every other. You are busy. You have lots to do. Your family needs you". What a decision. Do I go and have fun and take the time to enjoy this trip with the boys since it sounds like I might not get a fun break anytime soon? Or do I sit by Mom's bedside and get as much together time as I can since our time together is like liquid gold? Did I say TODAY IS SHITTY?

Thursday, November 21, 2013

Tell Me if You've Seen Fontelle Willacine

Yesterday was a long day. I started receiving calls in between work meetings that Mom was sick to her stomach and only able to hold down 7up. I had my last client call finished at 6:30pm. I came home and decided to squeeze in a quick workout before I was going to make the boys dinner. The workouts are essential to my mental health these days. 5:08 into my treadmill run I got a call.

Mom's care taker said Mom was still not feeling well, confused and her blood pressure was 200/100. I asked in her opinion if I really needed to take her to ER. The process of going there for her both mentally and physically is very draining. Then one of us, either myself or my brother must accompany her in order to tell the complete story.

To make a long story short, we decided due to risk of stroke, she should go to the ER. Plus her abdomen was severely swollen and very sensitive. Mom would say "I am in pain, I need to see a doctor" but then finish it by saying "where are we going and why?"

A friendly face checked her in. It was not our first ER rodeo, so she recognized us. Mom went to room 9. "Wow, I think I was in room 11 before". They asked if we wanted tests to be run. "Well, she has graduated from hospice and they just released her from the at home program, so yes, please treat her". Duh! During all the tests Mom was pretty chatty but also had long pauses where she would stare off in the distance. If only we could read her mind what would it be saying?

Out of the blue she says "You know it was my sister's Fonie's birthday this past week. Have you seen her?" I look at Shawn. Fonie, "Aunt Fon" to me, was one of a kind. She and Mom had the closest relationship any two sisters could ever have. Fonie was two years older than Mom. But, Aunt Fon tragically passed away more than 10 years ago.

"Some people told me Fonie lives close to me. Are you sure you have not seen her?". I avoided a response as I processed what she was thinking. Am I reading too much in to this to think that perhaps this was god's way of bringing the two of them closer? Is Mom perhaps shutting down and feeling closer to her now since she has never brought her up in this journey so far? "Well, please tell me if you have seen Fontelle Willacine"she said again (this caught me off guard — the fact that she said her full name, and crazy middle name too). This time I looked her into her eyes and said "I'm sorry Mom but Aunt Fon passed away more than 10 years ago". Long silence. Long pause. Long stare in space.

Mom was admitted overnight for severe swelling of water in her abdomen and some in her back lungs and heart. As they wheeled her off Mom said "Make sure I am tagged, so they know where to find me and I know where to find you".

Wednesday, November 20, 2013

Hammer. Apple. Penny.

Mom is "back". Back to her current state of mind (happy confusion) versus ever being back to her old state of mind (managing her own life). That stage of life is in the past.

There have been no emergency phone calls, no police, no issues. I did offer to "do lunch" which she took me up on. Today the topic was "boredom". She said she thought it was time to start driving again. I told her that she could not drive and she responded "Who told you that?" I reminded her that the doctor told her she could no longer drive. Her response, "well, that is a bummer! Are you sure that is what she said?"...."um, yes Mom, I am sure that is what she said". "Well then, I think I need a job. I think it's time to go back to work".

Isn't the body and mind interesting? How can she one day be completley distraught with anxiety and the next day be wanting to go back to work? It's as if her brain is only remembering all the good memories. The neurologist says she does not have alzheimer's or dementia. "How can that be, I say?"

The neurologist says it's because she can create new memories. "What day is it?" She responded "Wednesday" (it was Monday). "What month is it?" "November" (right). "What year is it?" "2020" (ugh). "Ok, I am going to give you 3 words. I want you to remember them and then I will ask you some other questions and then I'll ask you those 3 words and you will need to tell them to me". "Ready? Hammer. Apple. Penny". "Now name as many farm animals as you can in one minute".

Mom took this all very seriously. As the family and care givers would say "Mom really knows how to show well". In other words, she is vain. She is dressed to the T. Her hair is perfect. Her make up is all there. She can charm the sox off anyone new she meets. That is the Mom we all knew. It is like when she crosses the doorway into any doctor's office she goes back in to work mode —her mind knows what to do. We just can't explain it. Maybe it goes back to working for so many demanding judges at the courthouse? Or all those years organizing events for her peers in law? Or perhaps keeping all the secret service agents feeling confident that she could keep a secret? Or having to raise 2 children without any support? Whatever it is, she knows how to make doctor's puzzled.

"Hammer. Apple...hmmm...I can't remember the third word". "I'll give you a hint. It starts with a p"..."piano?" "no close, penny".

"Well Betsy, she got two out of three right. Her left hand has more tremors. But all I can account this to is her underlying condition. There must be something systemic. Something we can't unfortunately diagnose". "Of course" I respond. "Of course".

14 phone calls

I called Mom this week to check in. It had been a hard week last week. She called the police on the care giver. Mom thought she took her purse. Come to find out her purse was under a blanket in the family room where she had been watching tv. The very next night I had to go over and get her out of the house because she called my brother while he was on vacation in Maui threatening to call the police again.

For some reason this week Mom has had a lot of anxiety and like clock work her confusion and paranoia seems to happen when the sun goes down. Is she "sundowning again" or is it just part of the kidney diagnosis? No one can tell us.

I rushed over to her house and had to almost physically carry her out of her house this time. She had just had a great drive with the caregiver over to Half Moon Bay yet she doesn't know why "Ava" is even in her house..."Why is she here?" "She doesn't live here". "She is not my room mate — I want her out of here".

Mom was hungry. We got her her favorite meal; a cheeseburger and a milkshake. I thought that would get her mind off of Ava. It wasn't until I got her back to my house and she saw my boys that she started to calm down a bit and be less agitated.

I calmly reminded her that we were all leaving for Eugene Oregon bright and early in the morning to visit Ty (my daughter) at College. She processed that and asked if she could stay at our house with Idaho, our dog, while we were away. All of this got her mind off of things. She watched me pack and even offered to run errands for me. I love when she says stuff like that because it means she is coming back to her true state — a state of wanting to feel needed and reminiscent of her life 10 months ago.

We got up at 5 am and left for the long 9 hour drive to University of Oregon. I thought everything was behind us. Then the phone calls started to happen. 14 phone calls to be exact. I know there were 14 because I save most of them in case I never get to hear her voice again. They started around 9am when she got up. They went on and on for the next 5 hours. She wanted to know why there were people in her house? How long would they stay? Why couldn't I rush over to take her for a drive? I finally had to say "stop calling me!" She hung up. I felt awful. We did not speak again until I called her when we crossed back over the bay bridge on our way home.

Monday, November 18, 2013

The Lake

If you are from San Mateo County all of us know there is no lake here. The only lake I grew up knowing about is the Crystal Springs Resivoir. I dream about water-sking on it because it is so flat. I even asked my girlfriends for my 50th, if they'd be willing to do some jail time to make that dream a reality for me.

Mom's lake is the Foster City Lagoon. She asks to drive over to it daily. Jane use to take her there to eat lunch, stroll along the lagoon, watch the wind surfers or peek in at the senior center. Now Mom convinces every new care taker to take her there to enjoy the sites.

Last Friday I called to check in. I had been on a business trip to New York City for a few days so I thought I'd work a half day Friday and take her to lunch. That morning she said she had a slight cold, cancelled her weekly hair appointment and was going to "take it easy". She asked for a rain check.

Of course I rescheduled my day accordingly. Then not more than an hour later around lunch time I got a phone call from Mom, "Hiya. I was hoping since we have not seen each other in days, we could do lunch". She loved to "do lunch". I kind of reminded her that she had declined lunch due to her not feeling well. She just responded, "Well I feel great now and I'd love to get out of the house". How could I refuse?

I grabbed some tacos and drove her to the lake. She loved every second of it. "Look at the ducks. Look at the beautiful sparkles off the water. Look at the windsurfers". We were parked in the handicap spot overlooking the lagoon. She acted as if we were vacationing and overlooking the Italian Riviera. It was sunny. It was magnificent.

Where's Shawn?

Mom's 85th Birthday was this September. We decided to not throw a huge party, but instead make it a more intimate celebration with Shawn (my husband), my kids and my brother and his wife. We took her to a fun place to eat and sing happy to birthday to her.

She was loving every second of it. Every course she thought tasted better and better. At one point she had total clarity. She went around the table, starting with Shawn and pointed at each of us as she said "I love you and you, and you, and you and you and you and you!". It brought tears to my eyes. She said "How could I be so lucky?". Then I lost it, I almost had to excuse myself from the table. She on the other hand was as happy as happy can be. That was until she immediately turned to me and said "How is Shawn? Is he traveling?". As I looked down at Shawn on the other side of the table the reality collided with the laughter. I reminded myself to just live in the moment.

I Don't Think I am Here

This story is a bit out of the norm. What I mean by that is, please do not take offense to it. My Mom is anything but a racist or judgemental. This all has to do with her confusion as to where she is from day to day —even though she is still at her house with her beautiful roses and apple tree.

As I have mentioned, there have been a lot of caregivers in and out of Mom's house since last January. It all comes down to chemistry between the care giver and Mom. In most cases a soft spoken, polite, fairly older care giver seems to be the right mix. She loves someone who can cook, drive and have a little fun on the side.

My brother had a missed call from Mom. Not out of the ordinary. Then another call came in. We all know that once the phone keeps ringing with Mom's number, we need to take the call. The calls can be anything like talking her out of something like wanting to drive, calming her down because she thinks the care giver is stealing her clothes or just reminding her over and over again about an upcoming appointment.

This time she said to my brother, "What is my address?", he replied "XXXX Pasadena Drive", She replied "I don't think I am here". He kind of chuckled and said "Oh, I know you are there Mom". Not convinced she said "Well then, what is my phone number?" and he replied with it. She then said, "Well, if you say I am at home, then what the heck is this black person doing here?". Honestly it was a legitimate question. At the time we did not know the service had sent a new care giver out. This kind of event causes us to decide who is most available to go in person to talk Mom off the panic wagon. I was the best candidate that day.

I rush over to the house and before I can get to the door Mom is outside without her walker asking "Who is this?" and I say "She is your new care giver". Mom then says "Well why didn't one of you tell me?" It wasn't the person's skin color that she had a concern with. It was the communication. Lesson learned. Even though Mom will forget what you tell her ten minutes later, she still wants to be in charge. Goes back to her days at the secret service and courthouse. God love her.

I'll Have a Taco Supreme

It's the simple things in life these days I am learning to appreciate. Some days I wish I had time to take Mom to places she once loved to go like Maui for some cool air, Tahoe for sites and a casino or two or Half Moon Bay for lunch at the Miramar Beach Restaurant. Today all I had time for was Taco Bell. 

Taking her for a drive down El Camino and eating at a place like Taco Bell is like me going to Santa Barbara and eating at my favorite sushi place. I can't help but embrace the simplicity of it all. Mom ordered a Taco Supreme. I noticed for the first time how shaky her hand was holding the taco. I never say anything about it because I do not want her to focus on it or feel embarrassed by it — after all she has a ton of pride. She said "gosh, I can hardly hold my taco today". I just said "who cares, as long as it doesn't hurt, it does not matter". She changed the topic and responded "Gosh, this is the best, best,  taco I have ever had". Perspective my friends.

The Doctor. The Accountant. The Lawyer.

As you might guess it takes a team of people to help manage Mom's new life. Luckily my brother and his wife are one hundred percent in it with me. Each of us has taken on a role. I do not know what people do that have life altering medical issues with no family support.

My brother has become the medicet specialist (the Doctor). He makes sure all of the prescriptions are in order, filled and actually dropped into the two plastic medicet's at Mom's house. He stops by every few days and makes sure everything is in order. My sister-in-law has taken all of Mom's bills and expenses and put them online so she can pay all her bills and manage her finances (the Accountant). I tend to make a lot of the doctor's calls, listen to their diagnosis, help to initiate and collaborate on what is "next" for her, and help to consult with the Agency we hired to help care for Mom (the Lawyer).

However Mom's point of view is this. The other day while my brother and I were consulting with the Agency on her care, she said to the Owner, "My Son, is great! He is a Do-er! He gets things done. He tells me what to do, and I do it". So the owner says, well then what does your daughter do? There was a long pause. "Well, she is a great caretaker. She is a Mom".  The owner kind of gave me a smile and said "Oh gosh, I know she owns her own business, so I am guessing she does more than just take care of her children". I chuckled. She was right about one thing, I am a Mom, and I love being one, but people that know me — know that would not be the first description they would give me.

Mom continues to have her rose colored glasses on. She wants me to be a Mom, not a lawyer or an Agency owner. This is a metaphor for my life growing up; she always was very proud of me, but I was never convinced she really "got me". I mean I think she sees me how she wants to see me versus who I truly was. Some things don't change. It's ok though, I don't hold it against her.

It's a Little D-U-L-L

Mom graduated from hospice. She is like a cat with nine lives. She is now in a program called "Aims". It allows a nurse to come every week to check on her at home and allows us to start talking with all her subcontractors again. I am not sure how I feel about this. It is bittersweet that she has overcome the awful timeline we were given, but the thought of having to take her back and forth to all the appointments again is mentally exhausting.

Mom calls any day that she does not get outside. In fact even when she does get outside, she still calls and says that she has not been out for days. On top of that, she has probably had about 25 different care givers since Jane left. Jane's husband got a job a few hours away, so we lost her. Mom loved her. But on the bright side, if there is a bright side, Mom never remembers any of the care givers names or faces anyways so I think she thinks Jane is still around. Well, except for the day I called to check in with her and I said, "Hey Mom. How are you today?" and her reply as cheery as she could be was "A little D-U-L-L"...It took me by surprise, I had to process it and say it over in my head before I got it. It made me chuckle. As if the care taker couldn't spell. Even in her state of mind, she is sharp as a tack.

It Would be Better If There Were Men Here

Mom always loved to socialize. The interesting thing is that she never remarried after Daddy died. To this day she still wears a ring on her wedding finger. In the late 80's I finally talked her into wearing more of a cocktail ring on that finger in hopes men would not mistake that for a wedding ring. She still talks about Daddy in the present tense. When I reflect on her charisma, her beauty and her personality it really is noble of her to have loved my father that much but now being a wife and mother myself, I feel like she gave up a part of herself that she didn't need to.

Mom gets anxious. I always host a "girls only" cocktail party for my Birthday. This year I dedicated the party to my Mom thinking she would not be here next year. In the past she would always buy me something to wear (for the love of fashion) and get me a mushy card. This year she forgot entirely. The night of the party more than 30 girls were there. Most had either met my Mom at school pick up when she use to help get the kids home from school or they had run in to her at the kids games. None the less all my girlfriends were there that night to support me and say "hi" to her.

She called and tried to back out of coming over. She looks forward to things and then tends to get anxious and back out at the last minute. This is part of the disease, perhaps undiagnosed dementia? This night I insisted she come.

She arrived looking "like a million bucks". I escorted her out into the backyard and she beamed with excitement. I knew I had made the right decision. She loves people. Being isolated at home, not being able to drive and get out is like asking a singer to not sing again. Being social is her livelihood so we always try to find caregivers who can drive — even if it's just down el camino.

Mom loved the party. She nibbled on some food and even tried to show off and kiss me dancing around without her cane. But the best line of the night was when I over heard her saying to one of my girl friends, "It is a great party, but there are a lot of girls here — it would be even better if some men were invited". And so you have it. Living in the moment once again. Another bold statement that would not have slipped out of her lips before the disease. We are seeing her in her true state of mind. How refreshing.

Is Blake Driving Yet?

It is amazing to think that last December Mom was walking up and down our monumental outdoor stairs without a railing or help. She was taking Blake and and his best friend Oliver to McDonald's every Wednesday after school. She even had memorized their orders. She was working at the Church office doing shorthand every Friday. But now she asks the same questions over and over like a bicycle spoke turning around and around. She was told she could not drive when she came back from the first hospital stay. That was a hard blow to her. She equated this with loosing her freedom, her independence. She asked me if Blake was driving yet? "Um, no, Blake is 11, but Chase is driving"...."Is Ty driving?" "Yes, Ty is away at College and she drives"...."Oh that's wonderful. Is Blake driving?"

It is amazing how the brain works. Luckily the kids love her unconditionally and think that her mind is as healthy as it always was. Every time we visit they will each say, "Mom, she only asked me what school I went to six times today — she is fine!" My kids obviously put on the rose colored glasses before me.

I'm Ready to PARTTTTTY!

We got mom home stabilized with 24/7 care with hospice as a support system. Her favorite caretaker is Jane. Jane drives her to Burger King, to Foster City lagoon and takes her to her weekly hair appointment. It is expensive to have care around the clock but I offered to have Mom stay with us and she kind of gave me the crazy eyes. There is certainly moments of pure clarity.

The night before Easter I got a call in the middle of the night. It was my worst fear. It was Mom's number in the auto dial. I answered with hesitation thinking the worst, "Hello?" "Hiya! It's Mom. I am ready to parttyyyy". When I type this, I am trying to accentuate the "t" like she did when she said it. I responded "Mom, it's 2:00 in the morning. You need to go back to bed. Besides the party is not for 12 hours"...and she says again "I am ready to parttyyy"...I had to laugh. What has happened is this shift from a mom who use to worry all the time and would never have called me in the middle of the night for fear of disturbing my sleep, to a mom that was embracing the moment. Living every day, actually every hour to the fullest. She had found rose colored glasses. And so, I decided to find a pair and wear them too!

I Am At Work and I Have No Clothes

We finally had a diagnosis: A terminal kidney condition. I went from not knowing any of my Mom's doctors to having them all on speed dial. The doctors on the other hand don't talk to anyone unless called upon. Welcome to the tangled web called the medical system. What I learned rather quickly is that each doctor treats for their own speciality; the kidney doctor is trying to save the kidney, the cardiologist is trying to keep the heart healthy, the neurologist is trying to keep the brain sharp. I started to equate all these specialists to "subcontractors". But the "contractor", her primary care physician was not a collaborator either. I found out through numerous phone calls and speaking with many nurses, care givers and wellness case workers that the only doctor that really likes to collaborate with the family in this sort of case is a Palliative Care Physician. Thank god for Dr. Perch!

I received a call from Mom, "Hi Betsy, It's Mom. I'm at work and I have no clothes". I need you to come get me so I can come home". That broke my heart. She was equating her hospital room with a place she did not want to be; work. I knew at that moment it was time to bring her home for good. I look back on that call and the look on my mom's face in the hospital and truly believe had it not been for that meeting with Dr. Perch where she told my brother and I that we were doing the right thing; to remove her from the medical system and put on her hospice, she would not be here today.

No one wanted to tell us what the answer was. No one would tell us how much time she had. No one wanted to take responsibility for taking her out of the hospital or removing her from the medical system. Including Mom. We asked her if she wanted to go home so that she could be closer to Daddy and she would just say "well, I guess there is really no great outcome". So Dr. Perch helped us decide by saying "You need to stop chasing magic fairy dust". And so we did. She was given six months to live.

I Dont' Want a Funeral

Mom was admitted to the hospital. They did all kinds of tests and concluded she had severe Edema and that she was "sundowning". I had never heard the term "sundowning" before but once I stared talking with girlfriends that also had been down a journey of taking care of older loved ones I learned more about it.

Mom use to cry over spilled milk. She was very emotional. The last thing she ever would want was to see me or my brother cry. I visited her in the hospital the next day and she was like a different person. In a weird way. My intuition told me that her behavior was not normal. She went on to tell me that she did not want a funeral. She wanted to be buried next to "Daddy" and we should only invite the immediate family. She would have never spoken of such a sad topic due to her obsession with privacy. I of course could not hold in my tears any longer, and started to cry. In the past, this would have made her completely upset to see me upset, but today she just looked into my eyes with a blank stare and offered me a kleenex. She never was the same.

The Silver Lining

Mom was overprotective. My brother and I were adopted. My father died of cancer when I was four. All of this is background to my story. I am forty six years old, married to a wonderful guy, a mother of three children who are 19, 16 and 11, founder and partner in a creative branding agency and faced with caring for my Mother. If you knew me last year, I would have told you that my Mom was a bit of a worry wart and my brother and I were not that close. Fast forward almost a year later and I will say my Mom embraces every ounce of life with rosey colored glasses and my brother and I are a true team.

Mom drove across the golden gate bridge in her twenties searching for success. She worked for the secret service as a secretary and met my Dad in San Francisco. It was a fairy tale life. He graduated from Boston College and was an avid sports fan — especially baseball. My family who had the pleasure of knowing him tell me he was the nicest guy you could ever meet. I really don't remember much. I see myself in a few photos and think I remember him, but honestly I was just too young to remember. Or perhaps because Mom didn't allow my brother and I to attend his funeral, I just blocked it all out.

Last January my life changed. Her life changed. Actually all of our lives changed. Mom called me late one night in a panic. She was really scared. I rushed over to her house to make sure she was ok and to evaluate the situation as I had been through a few false alarms due to her over sensitive nature (it wasn't my first ER rodeo with her). I found her in a completely different physical and mental state then I had ever seen her before. Her legs, hands, arms and face were severely swollen and she was looping around the house obsessing over making sure her doors were locked, the stove was off, her pills were taken, and at the same time she really wanted to go to the ER.

My brother and I had never really had to get involved in any of her health issues. She after all had raised two children on her own through social security payments and part time jobs after my father's death. With his life insurance she paid off the house so she could stay at home while we were at school. She raised us through 5th grade until we were in school long enough for her to get a full time job (she worked as the superior court administrator for San Mateo County). I don't remember ever not having anything that I wanted — especially clothes. My Mom loved fashion and so she was happy to spend money on clothes to look and feel good. She would always say "I love to look like a million bucks". I wouldn't call her vain, but in some ways she is. She was the beauty queen of her home town in Ephrata, Washington. 

I could not tell the ER doctor how old she was. After all Mom did not like to tell anyone her age. Even my kids would get the same response I did growing up; "I'm old enough to be a Mother". That night Mom brought up my Dad. Her mind was in other places. The doctor started to review her files. We had to walk him through what we knew; Yes, Mom had a pre cancerous tumor removed in the side of her cheek shortly after she was married-so she is not having a stroke; yes, she had breast cancer, yes she had non-hodgkins lymphoma back in the 80's and went into a coma; yes she had dialysis because of kidney failure; yes we are aware she has high blood pressure.

As we waited for her to be admitted my brother told me that he found out Daddy died because his best friend "Bobby" told him on the playground at school. After all these years of not being close to my brother, I finally had something I could relate to. To my surprise, he too, had been holding in some pretty life shaping memories. That moment everything changed. Mom got what she always wanted in her own unique way. My brother and I would be closer than we ever had been. She knew how to work miracles.