Who Cares What Nansi Thinks?

The entire purpose of this blog is to offer my experiences in hopes that someone may benefit. I recently joined a yahoo group consisting of people who are caring for elderly parents. It's a huge list. One of them is moving her father in with her. I offered her this advice today, and I offer it to you....

My employer places a strong emphasis on "resident rights". It's the main thrust of almost every meeting, or goal we set. We are very conscious of the resident's right to dignity, freedom of choice, simple pleasures and basic living essentials. As a means to that end, our building established a resident counsel. I don't know if all nursing homes have that, but ours does.

Mom would rise up from the dead to attend a resident counsel meeting. I've seen her be sick as a dog, but perk right up when she finds out it's meeting day. I don't attend, but I hear she holds court every time there's a meeting.

Mom usually stops by the business office to complain about what was said and who did or did not attend. She takes great offense if the administrator is not there.

The other morning, Mom triumphantly wheeled herself into my office and bragged about her latest encounter with my boss. "I told her that I understand it takes an engraved invitation for her to attend a counsel meeting so here it is." With that Mom handed her a written invitation.

Mom was so proud of herself. I could have died. Mom doesn't consider that this is where I work. I have to stop thinking that my performance is being judged by Mom's actions. It's hard to make that break.


As it turns out, Mom did what she was supposed to do. By law, the administrator is barred from the counsel meetings unless she's expressly invited to attend.

See? Mom's not all bad. :o)

Yesterday marked the one year point since Mom and I entered the nursing home. She as a resident, I as an employee.

In many ways Mom's life is much improved. Before she went in, she would sit in her apartment for weeks on end. The only company she got was me, or the mooches in her building who were always trying to hit her up for cash, or worse-drugs.

Most of the mental hospitals in my state have been closed down. The surprising result has been an upswing in younger disabled people populating what once was senior high rises. The last years in Mom's building were frightening. There were several very mentally ill people residing there, and "home" wasn't so sweet anymore.

The night I went to begin clearing Mom's apartment, I came upon a very surprising event. The place was swarming with police. It was the culmination of a months' long investigation into a drug and prostitution ring. IN A SENIOR HIGH RISE???? Yep. A woman had gone into a nursing home permanently, but her granddaughter had maintained her apartment for over a year. The rent was based upon her grandmother's income, so for about $200 a month, the girl had a nice one bedroom apartment. She was selling drugs and turning tricks in the old folks' home!!! Sheeesh!

I digress.

It's the one year point at the nursing home. It's good to see Mom making friendships. She's much more active socially than I remember her being for decades. But sadly, she's also doing less and less for herself. Mom's always been somewhat of a prima dona, expecting special service and complaining loudly when denied it. But now she refuses to do the simplest things for herself. It's not disability, it's choice.

An example of this would be, she insists that she can sew by hand and keeps demanding needles and thread, yet she won't peel and slice a banana for herself. Both tasks require the same motor skills, yet one task she insists be done for her.

As for my own one-year mark, I worry about me. I'm tired. I miss my old job at Fox's. I miss the people I had come to love so much. My job is so entwined with the difficulties I experience with my mother. At times, I wish I could just enjoy my work, at other times, I'm grateful that all my life-stress is encapsulated into an eight hour day. I can't imagine how I'd "work my mother in" to my busy life if she weren't with me every day....

One of my dearest friends-who also has worked in a nursing home- wrote this to me today:

I understand this intimately, Nansi. You are in one of the most draining "industries" of work. There is no easy way to manage the end of life. No one is winning: not you, nor your mom, nor any of the old people and their stories who haunt me sometimes still when I go to bed. There is only so much one person can do for our elders. I think, hard as it is, you are giving all you can. Please, find room to recharge yourself so you don't burn out at your job. Humanity needs you there.

I'm going to do my best to take her advice this weekend, although I think I've already failed. It's four in the morning, I can't sleep, I lay here and worry.

My co-workers are exhausted. I appreciate their efforts so much. Working in a nursing home is more hectic that I ever imagined. I walk down the halls and the call bells are going crazy, the CNA's are running like crazy! The place just hammers.

I always imagined a nursing home to be quiet and peaceful, and maybe a little sad. I was wrong. We're always running. There are not enough hours in a day and I find that I always leave with so much undone. I think the residents pick up on it.

Chaos feeds on chaos. It seems that when administration is stressed, the residents become agitated, thus creating more stress.

Earlier in the week we had a resident whom we knew was dying. This resident was fighting the inevitable. There seemed to be a swelling atmosphere of restlessness throughout the building. The morning and early afternoon was full of oddball things like a meal cart upsetting, two perfectly friendly residents lashing out at each other, family members complaining loudly. It all rose to a crescendo at around 2:30pm. Then suddenly, peace reigned. Everyone quieted down. I remember that time because I had an appointment that wrapped up and I noticed that things seemed to be settling down. I later found out that this was precisely the time our dying resident gave up the fight.

What happens in the atmosphere around us when death is so near? I wonder.

We recently moved an entire wing of residents into a newly renovated section. The old rooms sit empty. There's no one at the nurse's desk. The only person remaining in that wing is a Registered Nurse who has her office there. She tells of call bells going off, sounds of clattering trays, and voices. This wing is an entire floor of the building. There's no way these sounds are coming from any other section of the home. Creeeepy!!!!

Mom has another UTI. (Urinary Tract Infection) She rarely goes for more than a month before she's infected again. You might think it's a hygiene issue, but it isn't. The bacteria that we can't seem to thwart is a result of kidney stones.

I thought she might be getting sick again last week... and I was right.

How did I know? One of the most surprising things I've learned is that UTIs often manifest as dementia in the elderly. Mom hallucinates, becomes very agitated and disoriented.

I noticed a change in her 10 days ago, but I attributed it to the recent room move. Wrong. I'm hoping that the antibiotics will bring her comfort. She's been miserable.

Introduction

I'd like to tell you about three special people who grace my days.

The Divine Mr. M.

The first is Mr. M. If you passed him on the road, you might walk across the street to avoid him. He's scruffy and sometimes smells bad. He rarely wears his teeth or hearing aids, and squints a lot. He refuses to use a walker, preferring to scamper along behind his wheel chair. When he gets tired, he sits in his wheel chair and scoots along with his feet.

Mr. M. is a bit demented. He always thinks he's going to Philadelphia. He comes and asks for $200 for a bus trip, but can be convinced to be happy with $5 instead.

One day I found him crumpled beside his toilet. He was partially nude and pretty badly soiled. I covered him and ran for a nurse to help clean him up. Later that day, I stopped in to make sure he was OK. He seemed embarrassed that I'd seen him so exposed. I pretended the incident didn't happen and went on to tell him about my new grandson.

Later he showed up in the Business Office with his mandolin. Secretly I dreaded what was probably going to be a painful performance, but I offered him a chair and braced myself.

The transformation was amazing. He played beautifully. First he played Amazing Grace, then a couple of tunes I did not know. While Mr. M. played his mandolin the years melted away. His physical challenges became invisible. Both of us were transported to a time when he was young and vital and very talented. His performance brought tears to my eyes. When he was done, he plopped his instrument into the seat of his wheelchair, kissed the top of my head, and skittered off on his merry way.

Miss G

Miss G is relatively young to be in a nursing home. She's pretty much alone in this world. She never married and never had children. I've seen a niece once or twice, but her sister from New Jersey makes regular visits and takes her on trips to the casinos.

Miss G always smiles. She's so full of love that her glow can be felt even when you can't see her. She doesn't have much to smile about. Her hands are gnarled with arthritis. Her feet are stuffed into corrective shoes and her spine is riddled with degenerative spine fractures. I know she suffers every waking moment.

Every time her sister takes her to the casinos, Miss G vows to "Make a million bucks, buy the nursing home and turn it into a cat house." (And she doesn't mean pet store!) She'll tell you that Hooters is always after her to be the star waitress. And her favorite pass time is to sit in the lobby and ask the handsome ambulance drivers to take her out for a date or give her their phone numbers.

It is impossible to be down when you're around Miss G. She's always got a kind word or an "I love you, honey!" I thank God everyday that I know her.

My heart belongs to Miss V....

I'm the fashionista of the building. I have over 40 pairs of shoes in every color you can imagine. One day I was walking down the hall in my orange Enzo's when I heard someone shout "ORANGE ORANGE!! ORANGE ORANGE!!"

It was a new resident. I went to introduce myself to her and was told that she hadn't spoken since her stroke. (I promptly went home and informed my fiancee that Jesus WANTS me to wear my shoes, they heal the sick!) The next day I wore green shoes and I got the same excited reaction.

We began a daily routine. I check in with her and she admires whatever I'm wearing.

As the months passed, her speech got better and better. Her speech got good enough to royally cuss her son out when he told her she wasn't going home. She was devastated and irate.

Her son isn't wrong. She's not able to care for herself anymore.

Her life is so interesting. She served in the military. She never remarried after her husband was killed in World War Two. She raised her son alone. She weathered this world all by herself. I could spend hours a day just sitting and talking with her.

One day she didn't seem right. She was rushed to the hospital where she stayed for several days. When she came back she didn't know me. I'd walk up to her and smile, say "hi" and touch her hand. She just looked confused and would say "why? why? why?" It made me so sad that she didn't know me anymore.

A few days ago I ran into her son and his wife. I lamented that she just wasn't the same anymore. He said, "Yes, it's sad that she's lost her eyesight." I confess that I just broke down and cried. I didn't know she couldn't SEE!!! No WONDER she didn't know me.

The next day I went to her. I sat by her and said, "It's me, Nansi." I took her hand and let her feel my hair (she loves to feel my hair). She grabbed me and said, "Oh honey. Why? Why? Why"" We both cried a little, but mostly just comforted each other.

She may be mad that she's in a nursing home, but I am so grateful that I have had this opportunity to know her and to make a difference in her life. She's certainly made me a better person for having known her.

These are our National Treasures, folks. Don't be afraid of your old people. Let them talk to you. Hear their stories. They're telling you YOUR story. They're the foundation of our society. The highest prize you can win is the friendship of a person at the end of their life. Listen. Listen. Listen. And when you do, you will have given Love.

A week or so ago I took my Mom to the doctor. We had a lot of time to sit and wait... and talk. It was a good talk, one of her more lucid hours. She talked about her past, how she was raised, and that she knows how hard it is on me to be doing this with her.

I told my mother that I feel like I have to pave the way for her in the medical community. I don't want them to see her as a lump. I want them to know what I know, that she's a person worth getting to know. Mom and I sat tearfully holding hands.

It's funny, I hug and kiss a lot of the residents in our building. But not my mom. We just didn't have a relationship that included physical affection. It's hard for me to touch my mother. It doesn't feel right.

So why is it so easy to give my affection to virtual strangers?

Today I was approached by several members of the Activities Department. They said my mother had stolen a pair of scissors. Great. Mom's stealing again.

The hardest thing for me is to see Mom as just one of the crowd. If I'd heard that Geraldine or Tom had stolen a pair of scissors, it wouldn't have phased me. I certainly wouldn't have thought, "Their children must be WORTHLESS!!!" So why do I feel so worthless when my mother steals or lies?

When Mom pulls another of her antics, I feel compelled to work twice as hard at my job. I certainly don't want my boss to think *I* am capable of such things. Something to work on, I suppose.

The saddest part of Mom's behaviors is, they're not new. I wish I could say, "Well, if she weren't a stroke victim, things would be different." But the truth is, my mom stole. My mom lied. My mom cheated, all when I was a young girl.

Mom called me in tears a few minutes ago. She desperately needed help, and no one would help her. I called the nursing home, spoke with the charge nurse-whom I trust- and was assured that Mom's aid was with her as we spoke.

Mom and I go through cycles. We spend good time together, she becomes very clingy and needy. No matter how much I do, she wants more. She'll escalate in the next few days. It will culminate in her standing in the administration offices shrieking my name. (Please God, don't let her be naked this time.)

So, here we go...chink...chink...chink.... up the track. Before long, we'll go careening down the track, hoping we don't fly off the ride.

We just got home from a family gathering at Mike's mom's house. Mike is the man I'm about to marry. This is the third marriage for both of us. Mike's mom is an amazing woman. She takes care of her disabled brother, full time. She does it with a pure heart and without agenda.

Mike is the oldest of seven children. They grew up on a Pennsylvania farm that had no indoor bathroom for much of their lives. The kids all worked the farm. They raised their food in livestock and gardens. His dad worked nights at a grocery store. His Mom stayed home and kept the family running smoothly.

Mike doesn't remember ever seeing his parents argue or fight. I've never had the pleasure of meeting Mike's dad, he passed away many years ago. His mom never remarried.

The stories of Mike's childhood are so different from mine. He talks of naming the cows, and crying when it was time to send them to slaughter. He talks of being chased by the neighbor's dogs on his way home from school, his first job in a grocery store, sharing space with his six siblings. Nothing too dramatic. Nothing too exciting. Normal? Is this what normal was?

I have fantastic childhood memories. Both good and bad. My earliest memory is of a terrible fight my mother was having with my oldest sister. Mom picked up a leather bull whip which our neighbor had gotten at "Six Gun Territory" that day. She snapped it like a pro and laid whelps on my sister's legs. I was four or five, which would have made my sister around eighteen years old. (My next memory is of that same sister coming home for a visit. She must have moved out shortly after that altercation.) I remember Mom chasing my other sister with a butcher knife. I remember her hitting my sister with a cast iron frying pan. I only remember violence against the girls. I never saw my mother mistreat my brother.

Dad. He was a handsome, jovial man. Everyone loved him. He sang and played the piano. He wrote funny skits for church youth rallies. He was a dead ringer for Benjamin Franklin. He waited on my mother hand and foot.

When mom was in her towering rages he would try to divert her away from us. Later he would come to us girls and say, "You know, your mom is unstable. Just hang in there. You are good girls and I love you." Then he would go to Mom and say "Our daughters are the spawn of Satan. No wonder you're so upset. I'll try to keep them in line."

We all thought we were right. Dad was trying to keep the peace in the house. But by playing both sides, he kept the conflict alive.

Both of my parents got jobs at Disney World when I was about 11 years old. That was the beginning of a few years of calm in our house. By this time, all of my siblings were married and it was just me. Like I said before, I knew how to gauge the situation and act accordingly. I figured out that if I kept the house clean, the laundry done, and dinner cooked, there was a better than 50/50 chance that all would be well.

The Disney Years were amazing. There was enough money in the house. We went to the theme park often and we even went on nice vacations. Just the three of us. I went to private school. I behaved. I only dated boys that who met with my parents approval. Life was good and life was relatively calm.

I once wrote in my diary that I'd rather spend time with my parents than anyone else. I'd say it was about a three year period of normalcy. I later learned that Mom had been on a good anti-psychotic.

When I was 14, Mom went to bed. She stayed in bed for weeks. She said it was arthritis. My two strong memories of that period were 1) She was unable to put on her bra. She made me do it. (for some reason that was absolutely revolting to me.) 2) She insisted that our very conservative pastor anoint her with oil and pray for her healing.

I envy Mike his mediocre childhood. I admire their frugality and wonder at the simple pleasures of life. My childhood was filled with the highest of highs and the lowest of lows. Rarely was there a middle ground.

Introduction

There are four of us. We are far flung. One in Tennessee, one in Texas, one in Michigan, and one in PA (me).

In the early years of our adulthood, Mom and Dad lived in Florida. To live anywhere near them was to choose a life of upheaval. Eventually, we all moved as far away from Florida as we could get.

I think that my life with Mom and Dad was easier than theirs. I was the youngest and lived alone with them from the time I was twelve years old. I had sat back and watched the battles in my early childhood years. I became an expert in determining the atmosphere, and adjusting to the climate.

When Dad died, I moved Mom to Pennsylvania with me. I think they were all relieved that she wasn't going with one of them.

I've said this to them a hundred times, but I don't think they believe me: While I envy them their ability to live their lives without the day-to-day struggle of getting Mom through, I do not resent them. I'm glad that we're not ALL embroiled in Mom's drama.

I feel the prayers they send up for me. I also feel the guilt they struggle with. If I had one wish, it would be for them to be relieved of that guilt. They're not guilty. They've done nothing wrong.

I chose this life. I knew at my dad's deathbed that bringing Mom home with me was a commitment to either her grave or mine. (Some days I swear she'll be the death of me!)

I love that my sibs call Mom, send her care packages, and send her cards. That's really all she needs from them. Just to know they care.

In 2002 I landed the job of my dreams. I worked in the corporate offices of a local chain of grocery stores. Fox's Markets. I adored my job and the people I worked with. I thought I would work there for the rest of my life. I was certainly committed to the Fox's for that long. Turns out, I only worked there for about five years.

Being so in love with my job blinded me to the reality of the situation. We were a handful of small grocery stores competing against huge chains who had no remorse about opening a superstore in a small town where Fox's had been the only store since 1968. I couldn't see the handwriting on the wall. I was gob smacked when I learned we'd been sold.

Sure, I could have clambered for one of the few positions they were offering to the corporate employees. But I couldn't stand the thought of being in the business without the Fox's. So I ventured out into the job market. Forty five years old. It didn't occur to me to be afraid I might not land a job!

As it turned out, I walked out of Fox's on the last day and the next day I started a job in an accounting firm. I lasted there five weeks.

Now, here's the magic that is my life... In the last week at the horrible accounting firm, I got an email from a place who had seen my resume on one of those on-line job search places. They called me and described the job. It was back in the health care field. A field I'd spent many years in.

I interviewed on a Wednesday afternoon. Turns out, it was a nursing home. I'd never worked in a nursing home. But the people seemed nice, they were desperate for help and I was desperate for a change.

That Wednesday night, I got a call from the alarm company that monitored my mother's apartment. She had pushed her "I've fallen and I can't get up" button, and an ambulance was on their way to her house. No sooner had the alarm company called, my mother called. As usual, I rushed over to her house.

Ugh. I found her covered in every excreted substance you can think of. Her apartment was covered as well. The ambulance guys were gagging in the living room. I managed to get my mom into the shower and clean her off, hoping we could get her to the hospital before the next bout hit.

They took her out. I surveyed the carnage of her apartment. My impulse was to lock the door and forget she ever lived there. But that isn't how I deal with things. I rolled up my sleeves and cleaned up a mess that I cannot begin to describe to you.

On Thursday, I was told that Mom had suffered a third stroke. She would not be able to return to her apartment. She'd already been looking into nursing homes, but was rejected by all of them. She had nothing and they didn't want her. Also on Thursday, the nursing home called me in for a second interview. They were desperate.

On Friday, I had my second interview. I also asked them to take my mother.

Doesn't that sound like a GREAT IDEA???? I can WORK where my mother LIVES!!!

I got the job. Mom got the bed. And we descended into a year of hell. I won't even drag you through all the things my mother has pulled this year. Suffice it to say, "My co-workers have seen my mother naked." My boss tried to make a joke of it by saying, "Nansi! I saw your mom walking down the hall yesterday, I thought we should iron her pants suit. Then I realized she was naked." Ba-dump bump.

So here I am, a year later. A lot of experiences have been logged in my brain. I've cried a bucket of tears. And honestly, I have not slept more than a couple of straight hours since this journey started. I spend many hours worrying about Mom. Worrying about my job. Wondering if I'll ever pull it all off.