Driving Ms Shirley

Today was a big day in the life of Mom. A trip outside the nursing home walls. A trip approximately a mile away. So why did I over-think it and get up early to make sure I had everything ready? For the same reason you pack a suitcase to take a toddler to the park. If you think you don't need it, you will. If you forgot it, you'll regret it. Rain hat...check, extra coat...check, kleenex...check, ginger ale...check, package of cookies...check.
See, Mom has, well had..a growth on her thumb. We didn't know what it was but it was icky and hurt her and grew and grew. After a mishap last month where it was partially torn off and bled like a geyser then promptly grew back, the doctor and I decided the best thing would be for her to see a dermatologist. And today was the day. After an early lunch and early meds the nice gentleman arrived to take us in the medi-van. We hooked her in and off we went. Mom was not happy and didn't really enjoy the whole three minute ride.
 It's hard to take her out because she's afraid of riding in vehicles, she can't see so the motion makes  her queasy and because she doesn't look out the windows she doesn't understand where she is. But we got there, her complaining and making dry eyed crying noises.
Then they gave me forms to fill in. Medical history and details. Any cancers, yes. Any surgeries, too many to list. Any medication allergies, yup. I gave up halfway down the last sheet. I had to, I had started to giggle and was concerned I'd be laughing so hard I'd start tears flowing. Why? I ame to this question:

is the patient pregnant or planning to become pregnant?

Even now I'm snickering. I wanted to answer "no but who knows what can happen". I didn't. I wanted to answer "she's eighty frikkin nine years old, chances of being with child are mighty slim". I didn't. I wanted to write "if she is you'd better look for the three wise men and a handful of camels" but I didn't.
Not everyone has my sense of humor. Especially Mom. Filling out forms is not a participation sport for Shirley. Every question I asked her she couldn't answer and it was making us both sad especially when I asked her "Mom, when was your mastectomy (or boobage removal procedure) and she said "ask Tia, Tia knows". Tia didn't know but Tia had had enough. So Tia handed back the forms and fed her a graham cracker and ginger-ale. And Tia hates people who talk in the third person so Tia will stop.

Fast forward to today, the day after. Mom's thumb doohickey was removed, we waited 45 minutes for the less than 5 minute ride back. I met a lovely lady in the waiting room and we had a nice chat about dogs and the elderly. Mom had a possible pyogenic granuloma on her thumb. That's fancy talk for what the dr thinks, pending the biopsy, was a blood blister that overgrew to heal itself. The Dr. removed it with a scapel and a laser and Mom did great. I was thrown back in time to when the boys were young and I'd be more nervous than they were when they were hurt or ill. Other than the injection for the numbing meds, Mom sat quietly and from time to time asked me where we were and would we miss the cake. I would tell her and ask her if she wanted some of the cake and she'd say no but she knew she'd miss it.

It's scary when my youngest child is my oldest family member. Now we will wait for the biopsy results but when they said we could discuss treatments if the results showed cancer I kept thinking "no we won't". We wouldn't treat it, we couldn't. Just as we cannot treat or diagnose the mass in her colon. We can just keep her comfy and hope for the best, whatever that is.

This post has no conclusion or drawn up lesson on life. It was just a day in my life with Mom. Her pain, her fears, and her boo boo. It isn't always funny and it isn't always meaningful. Sometimes it's just a break in the every day routine and arriving back to her room safe and as sound as she can be. Today will be a new day and at the end of it I'll arrive home safe and sound to my own life. Wondering what the best part of the day with Mom was. Yesterday it was twofold, her thumb is repairs and........ hey, she's not pregnant.

Imagine a world

Imagine a world where you wake up and don't know your own name. Imagine a day when you sit by the window waiting for your children to come. Imagine the end of that day going back to your room only to sit by that window tomorrow waiting for the family who never comes to see you.

Imagine sitting in your room alone, without your belongings, without your friends or family. Depending on a stranger to answer your bell and put you into the bathroom if you are able to do even that. Your home is gone, your spouse has died, your children rarely call. You wake up in pain, go to bed in pain. The memories you have are skewed, what was real and what was a show on your tv last night? You live to eat but don't eat enough to live. Your eyes are failing and your mind plays tricks on you. You cannot even tell who the photos on your wall are. You nap between sleeps, you sleep between naps.

Imagine that man or woman who shares your room is a stranger to you. No one asked you if you wanted them, no one cares if you don't. Other people touch your things, other people brush your teeth and comb your hair.

Imagine being reduced to crying alone in your room because you need something and don't know what the word is for it. Imagine knowing you are fading and knowing you cannot stop it. Your mind is going blank and you can feel the words being erased inside your head.

Imagine being told when to get up, what to wear, when to eat and what to eat.
Imagine sitting at the end of the hall, people passing by but no one stopping to talk to you, to say your name, to listen to you.

Imagine wheeling yourself through the halls all day long, hall by hall in a circle, looking for your sister, mother, father. Imagine talking to a picture on your wall because you think your beloved husband is there.

Imagine living in a world of memories because there is no dignity in reality.
Imagine wishing you were done, that life was over.

Imagine being old.

It smells just like Sunday

The less my Mother remembers, the more I do. And the memories that were so painful yesterday aren’t so bad today. It’s a good thing or I’d be a basket case. It’s hard to stop the flow of memories once they start.  I know this is true because no matter how hard I try I cannot do it. Little things set them off, a word, a smell, a sound and off my minds goes on a vacation down memory lane. These memories  spark in the oddest places, today in the grocery store it was the smell of perfume. Chanel No. 5 to be exact. Just a lingering smell left in an aisle by a wandering customer who will never know that her perfume took me back to Sunday mornings of my childhood. Waiting to go to church, everyone’s ready. My brother and father in their matching powder blue leisure suits, me in my over ruffled dress, hair in thick sausage curls, toes pinched by black patent leather shoes with stupid bows and buckles. We’d gather by the door to the garage and wait …and wait … and wait and finally Mom would come down in a cloud of Aqua Net  thick enough to make our noses plug, with an underlying smell so familiar to me that I can imagine it right now. Mom’s perfume, special for Sundays and other important occasions.  Then before my mind and nose could process it she’d rush us out the door and into the station wagon and off we’d go. Late for church as always.

We’d drive up Wood Road, onto the Ridge and arrive just as the opening processional started. The Robinsons, late as usual. Arriving in a sea of blue and pink, all of us smelling like Mom’s Chanel No. 5 as we snuck down the aisle behind the choir.

In HS my brother got the station wagon and he’d load it up with all of us and off we’d go to basketball games, United Skates of America, midnight movies, and other teen activities.  The wagon full of teenagers, rock music blaring on the 8 Track, perhaps a warm beer or twelve stolen from someone’s Dad’s garage. Old Spice, Love’s Baby Soft, hair spray and other teenage smells clogging the air. After we’d drop everyone off and head home the car would be empty except for my brother and me and the lingering light smell of Mom’s Sunday perfume. No matter how long we drove or what we did that scent always remained like a ghost just hovering and doomed to be there forever.

I have a few of Mom’s things in my bedroom. A jewelry box, a memory box and an empty bottle of Chanel No. 5. Sometimes when I’m dusting or cleaning or just feeling little I open the bottle and sniff and am instantly back in my god awful black patent leather shoes, hair in thick curls, frills out the wazoo, sitting on the bottom step in our old house waiting for Mom to hurry the hell up so we won’t be late for church again. A second sniff and in my mind she rushes past in her Sunday best, smelling just like Sundays should always smell. Smelling just like today smells.

if you don't eat your vegetables you can't have dessert (11/14/12)

and when it’s broken glass… who wouldn’t eat their green beans.

I get to play mom to my mom now-a-days. I go up three days a week and try to get the right before lunch.That way the staff gets one less person to deal with. My mother is one of the better ones but she still needs the help occasionally. They give her meals fancy names but chicken is chicken and they grind up all her meats anyway. I’m not sure why but it comes out all ground up. Usually she gets three bowls of food. Meat, starch, veggie. We put the bowls in certain spots, her cranberry juice always on one side, her veggies on the other, her meat at her left hand and her potatoes or rice at the other. She won’t eat the vegetables. No matter how many times I ask her to, she refuses to eat them. Today I tried to switch her bowls but for a blind old bat she sure does know when I move something. Good thing she can’t ground me because I racked up the dirty looks today.

We have a routine. Mom likes routines. I get there, she complains for 20 minutes, lunch is served and the whining stops. Usually. She always has it in for one of the staff. I think it gives her a sense of power to complain. She has no real control over anything in her life. I never knew why the elderly always seemed so unhappy. Now I get it. I can’t blame them. I’d be unhappy if I didn’t get to control anything any more and people were telling me what to do. To go from bossing your kids around to being treated like a child. No thank you.

Today I tried to get her to eat a few green beans. She refused. I was about to bribe her when it occurred to me that it really doesn’t matter if she eats her damn beans. She’s eighty frikkin seven. If we were in Alaska she’d be in the ‘board big ice cubes here’ line.

Still, the stubborn in me came out and I went with one last threat..

“Mom if you do not eat your beans you will not get dessert.”

if you ever have kids and need a threat, keep one thing in mind … do not make a threat unless you think the other party actually wants what you’re holding over their head. Know the enemy. I failed to do that. Apparently today’s dessert was broken glass. The woman who tried to kill us with JELLO now won’t eat disgusting JELLO concoctions. Broken glass is red, green, and orange JELLO chunks folded into vanilla pudding.. Geh.

Our biggest problem is the Alzheimer’s. She is not able to discern when things happen. She can’t remember what she had for dinner the night before, hell..sometimes not even 5 minutes after eating it but she sure can remember everything that ever went wrong for her up there. She just thinks it happened now. We’re muddling through this mess.

Today it was one thing and next time it will be something else and every time I go up a little bit more of her is missing. However, knowing her, she’ll remember and  end up grounding me for trying to make her eat her green beans. At least I really really hope so.

of boobs and bras (written 11/16/12)

with an assist to my friend Sus who sparked this memory (mammory??)

My Mom’s boob went missing a while back. Luckily she has old-timers so she forgot for the summer. Sadly, the staff did not and now Mom’s up to her neck in boob drama. My Mother is a Breast Cancer Survivor. Nothing could kill her, she’ll out live us all. I’m finding out I actually admire her. She may take the loopy road to get there but she is a fighter that’s for sure.  Because of her cancer, Mom is a boobclops.  Kind of. She’s has a mastectomy and a lumpectomy. Because of said chopping, she has a prosthesis (yes, I had to spell check it). All it was/is is a disc made of a jelly like substance that goes into a pocket on one cup of her bras. After she came to the nursing home her’s went missing. She mourned her lost boob and they search high and low for it but it never showed up. She treated it like Boobgate, a conspiracy of the worst kind. SHe ranted and raved and saw us all working together to keep her from having her boob. The nursing home offered to replace it and everyone kind of forgot. Every once in a while Mom would have a snit over her loss. But it passed and we rolled merrily along. Until the other day when the Social Worker came up to us at lunch and announced that she has a boob for Mom. Mom gave it her usual “why doesn’t anyone ever ask me what I want? maybe I don’t want it . They’re more trouble than they’re worth” and then was glad. I do think I agree with that last one.  So after lunch we go back to her room and do the popping in of the boob like substance. I really couldn’t see a difference but I’m really not one to notice boobs. coughmencough. She seemed okay with it so all was good.

Then I get up there Wednesday and Mom is all upset. Seems there are boob storage issues. No one knew where the other one put the boob. Luckily the social worker bought back up boob. I finally found it in her bed and was declared a hero. It has now been decided that after Mom gets undressed her aide will give the boob to the nurse who will then lock it up in the cart overnight. All this for something I could make with a balloon and some pudding. But the best part of this is this: Mom now refers to it as a boob and tells people that she has a new boob. My brother said he had tears from laughing the first time she said it. I’ve never felt so powerful or so amused with my Mom.  I am Super Tia, I can find lost boobs and warp elderly minds with ease!

today I saw my parents (written 4/16/13)

while at the eye specialist with my Mom. We were waiting for her appointment, it was a long wait. I’m not sure why we were there. Her new case supervisor requested it and I’m always up for a road trip. I think these occasional visits to the specialists are kind of mean. We know nothing can help her see. Her light bulb is flickering off and her world is mostly dark. I’m a reader, it would scare me half to death. It does scare me half to death. All things considered, she is an amazing little thing. Except when she has to wait more than five minutes for anything. Then she’s a screaming three year old I bribe with graham crackers and sips of juice. We waited over an hour in the waiting room, another hour in the exam room, and forty minutes for our medi-cab home. And it was during this time of pure boredom that I started watching the others who were waiting. A man in his twenties who was there to drive his Dad, a couple of business men, a lone woman reading and texting, another nursing home resident with an aide by her side, and us: my tiny grey haired Mother and me, her slightly pudgy (I’m working on that…really) almost 50 yr old daughter. People came in and out. The floor shook a little. They are removing a building in the area and you can feel it. Mom would complain now and then. She’d doze back off. And then I saw my Dad and Mom walk in. 

I know they weren’t my parents. I’m not there yet. But they were my parents at the same time. He came first. Aging, grey, stooped over. He looked tired. And he held the hand of a little old woman. She followed along, obviously unable to see well. He wasn’t mean, he’d wait a step or two for her to catch up. He’d tell her what they were passing and she’d look less scared. That was my parents. Before that call, before I showed up and altered everything. Before Dad died. That was my parents. Married 63 years and taking care of each other all that time. Toward the end, my Dad would lead Mom around, holding her hand. He’d reassure her when she was scared and help her find the way. They were a ‘them’ forever, they took that vow and stood by it. I never saw them like that. Just that hour or two before they were separated at the hospital. But today I saw them clearly. Those two people in the waiting room, walking together holding hands were my Parents. Even though they weren’t.

the long and twisted path to here

I guess it bears telling. Three hundred years ago, but really just shy of three years, the phone rang. It was my parents neighbor or in Florida and she was concerned about them. So off I went early the next morning, down to Florida with my brother`s so I thought girlfriend but she’s a whole different story for a whole different blog. We arrived and were picked up at the airport by a resident in my folks community. We knocked on their door unannounced and life as I knew it was done.

It’s not funny yet funny that I can pinpoint the very moment my life, and theirs changed. I knew in that tiny moment of time, as my Dad answered what he thought was a friend stopping over for a chat, that they would be going  home with me. Home to NY.  I just didn’t know how,when or why.

They did come home with me, Mom by air flight that led to this nursing  home. Dad in a box at my feet in a van filled with as much of their belongings as I could fit in.

By noon of that first day I had both parents in the emergency room of their local hospital. Soon Dad was moved to ICU with double pneumonia and Mom to another wing with a severe UTI. She never saw him again. Dad died four long days later. I signed the paperwork disconnecting his support and sat with him as he died. The monster of my childhood was gone and before he lost consciousness I promised I would become my Mother’s keeper. And so I am. My other monster is now my elderly child who looks to me for the simple things I can do and the impossible I cannot. These people who were so terrible had to be forgiven. I had to let go of anger and learn compassion. They could not change, I had to.

She is near me, I am here everyday. I reassure, cajole, comfort, defend, and tend to her. I clothe her, feed her, dry her tears and when she asks me over and over  ”Tia, what am I going to do, what will happen to me”, I tell her “I don’t know Mom but we are going to get through it together. I’m not going to let you face it alone”

I am indeed my Mother’s keeper, I am her daughter in spite of our past and no matter the future.

soothing the soul

This will not be a sweet and well written blog. This will not make you laugh and see only good things. This will be an honest account of life with a Mom who is learning to die and how I became a professional daughter. My path was never meant to stray to this, I was not raised by this woman I now reassure and tend to. The woman I knew as a child is not the woman I know now. I am alone facing her now and all thoughts, comments, and shared stories are welcome. Please join me in my tears, my humor, and my path as a professional daughter.