My Mom is Gone

My mother passed away today.

This afternoon, as my students were selecting choice time activities, I received a text on my phone.

Later, when I was able to view it, I saw it was from Alice. It read: JENNY AM SORRY THE TIME HAS COME AND SHE IS RESTING IN PEACE NOW

I was shocked. Even though I was so prepared, I couldn’t believe that it was possibly true that my mother was gone. Without thinking, I walked out of my classroom and dialed Alice’s number. As I spoke to her, questioning and re-questioning, I wandered into my principal’s office and took the hand of our amazingly understanding parent coordinator, Amy. As Amy and Anna realized what was happening at that moment, they both stopped working and turned their attention to me, hugging me and making a plan for how to cover Jonathan and me so that we could leave school and go to my mother’s house.

Elsa was at my mother’s house, in tears, when we arrived.

Then, a series of extraordinary events followed. I will describe these in another post.

For now, I want to say that in my experience, I agree with those who have said that one is never fully prepared for the passing of a loved one. I believed that I was very prepared, yet when my mother actually died, I was completely unprepared to experience the feelings that flowed into my body.

I also understand how all of the anger and frustration some people feel towards a loved one disappears upon death. I feel only loss and sorrow now, rather than anger and resentment towards my mother. And I’m sure, soon, I will remember her as the perfect person, make excuses for her behaviors, and describe her in completely new and different ways than I have in the past.

When I arrived at my mother’s house, her body was warm and she lay peacefully in her bed. She was no longer attached to her oxygen machine, so the room was quiet, other than the music that was playing on her iTunes, and she appeared to be sleeping, but without breathing. As the afternoon wore on, my mother became colder and stiffer, as we waited for the funeral home folks to come and remove her body-a strikingly emotional event.

I kissed her head, held her hands and said goodbye.

Each of us spent a few private moments with her to say goodbye.

I have lots more to tell, so numerous posts will follow. But I wanted to update this blog for the folks in similar situations who follow me and need to know what will happen and what comes next.

Thank you all for your support and interest.

End of Life Journal

I wish I had kept better records for a time-line of my mother’s illness as a resource for others. I am constantly researching on the web for the ‘next things I can expect’ on this journey I am experiencing with my mother.

Many of us want to know, “When will this end? How much time does she have left? When should a sit-and-be-with-vigil begin?” I want to be there for her, but there have been so many scares that turned out to be nothing…

I’ll try to briefly summarize my mother’s illness timeline:

January, 2014       diagnosed with IPF

March, 2014       hired geriatric social worker; hired full time live in nurse to assist

May, 2014       Last visit to primary care physician; given 6 months ballpark

Late spring       Enrolled in Visiting Nurse Program: PT, OT, Speech and Behavior support

Summer, 2014       confined to wheelchair; dementia evident; numerous behaviors surfaced

August, 2014       entered Hospice program

October 3              began morphine for comfort

Late October       complete incontinence began

Early November              24 hour care necessary

November 14       asleep, for 3 days, non-verbal, minimal food; first full prescribed dose of morphine; hospice nurse called in to check vitals, BPM dropped to 14 from 20+;

                             Mom called out to her dead father, “Daddy, wait for me!” all night long;

Today I visited. I noticed some reaction to what I said, “Your sister’s coming tomorrow, won’t that be nice?” with eyeball movement, frowns and vulnerable expressions. She also pulled her hands away from my touch more than once, which I thought was interesting. It feels like my mother hates me, even in her dying state. But I can’t believe that’s the case. She’s full of morphine-who knows what she is thinking and feeling?

I also called Hospice today to try to learn what happens after…?

It is not necessary to call 911 or to have the patient/body transferred to a hospital. We no longer have to be ‘pronounced dead’ in NY. The coroner no longer needs to come.

We call Hospice. We call the doctor. The doctor files a report to the city online. Then a death certificate is created. The funeral home orders the certificate and copies for the family. It’s best to get extras for various institutions that will need it.

I post all that I learn in the hope that it will help someone.

I must be an idiot!

I am a 56 year old woman. I am experienced. I am educated. I am not “well read” but I have read a book or two. I am in close contact with intelligent women. I teach six year olds and a large part of our curriculum is to give children language and tools to stand up to aggressive or assertive children who intimidate them. I have words at my disposal, I have skills, I have perspective and I have experience.

And yet, I am being bullied by my 22 year-old daughter.

And I am sick of it.

Tonight, I rehearsed things to say to her the next time she is being icky, aggressive or exceptionally critical.

I can start with the basic:

“STOP IT” or “GET OUT OF HERE!”

The natural follow up to this is:

“I DON’T’ LIKE IT WHEN YOU SPEAK TO ME THIS WAY.”

Then I can hit her with:

“WHO DO YOU THINK YOU ARE?”

and the classic

“ARE YOU THE BOSS OF ME?”

If all of these fails, I’ll counter with,

“YOU ARE NOT INVITED TO MY BIRTHDAY PARTY,”

a sure heart piercer!

The end is near, or is it?

Alice called me today. “Can you pass by?” she asked. “Your mom doesn’t look good.”

“Are you worried?” I asked.

“Yes,” Alice responded.

“OK, I’ll be by after yoga.” I’ll skip the mani-pedi.

Later Alice called. “You can come tomorrow. She is better now.”

“OK,” I said. “I’ll be there.”

I got a mani-pedi.

Morphine

My mother survived my weekend away…and then some. She was fine. It was amazing how she knew that I was sneaking away and that she could do something to sabotage my trip-but she was unsuccessful this time. We went anyway! All weekend, she ruminated about how I was getting married and didn’t want her at my wedding and/or that Elsa was getting married and that she had no dress or gift. But it was fine.

We came back. We have visited and even dined, many times.

A few weeks ago, the head hospice nurse called and expressed his feelings that my mother was straining and needed morphine. He asked me to speak to Alice about it. I did, and Alice did not feel it was time. We both deferred to her professional opinions. Several days later, Alice agreed that it was time, and she revealed to Elsa that part of her hesitation was caused by a previous lethal experience with morphine and her patient. At first, my mother was receiving morphine every other day or so, a half of the doctor’s dose. Now, I believe that she gets it every day, and maybe sometimes more than once a day.

We were all there for a big family dinner on Friday. My mother was up and at the table, alert, awake and looking around. It was amazing. 

But later, she was exhausted and went to bed and was fitful as she tried to sleep. She was moaning and tossing as much as she can, and I was devastated for her, believing that she was suffering. She had a frightened, hollow look in her eyes and seemed to be presenting only an outer shell of the person she has been as long as I have known her.

It was awful, and I was very sad. I left thinking that life, in the end, is cruel to those who live too long.

I visited again two days later. Although my mother was sitting up in a wheel chair, she had that gone, vacant look, garbled speech and unintelligible reactions to my conversation with Alice. How awful for her not to be heard and understood!

When I left, she was laboring to rest, even after morphine.

Today Alice tells me she slept deeply most of the day, but she also ate quite a bit.

I feel we are in a holding pattern: she’s steady, but declining a bit every day. We have no idea when this will end, and part of us hopes it’s soon, to end her suffering, and part of us dreads the day when there will no longer be opportunities to say anything more. And when the end comes, it will be final-no turning back, no, “But, wait!”

I feel actually peaceful. My anger has long dissipated and I understand that for many years, my mother has not been herself, her good/best self, that she once was. We have had a rough many years and I feel as though I have been put through the ringer on many occasions, but that’s ok. As long as I don’t repeat the pattern, I can accept how it’s been for us.

I only hope the morphine is keeping her from feeling too much pain.

What's has been happening for us…

What’s been happening?

My fellow blogger, MY DEMENTED MOM, has not posted since the death of her mother. While I completely understand this, I have to admit, I am curious about what is happening for her and for her family at this time.

In our family, we have been in a holding stage, so to speak. My mother is still able to get up each day, she talks, she sits on her balcony and watches the world, she eats, she talks on the phone, she complains and she observes. She cannot walk and she laments this fact all day, every day.

My mother is in Hospice care. She has a head Hospice nurse who visits weekly. She has a Hospice social worker and a Hospice spiritual care counselor who visit often as well. My mother has a sister and two cousins who contact her frequently. And she also has a devoted nurse who lives with her and sub nurses who care for her when her nurse is off duty. In short, although she is in Hospice, she is very lucky. She is home. She has quality care. She has company. She is loved.

My mother is sometimes completely coherent, and, is at other times, the opposite. Alice says that they have been in Amsterdam for the past two days. Amsterdam? On the flight home, my mother tried to disembark the plane and climb out of her bed in her sleep.

A sub nurse, Rhoda, texted me today, worried that my mom was not okay. The Hospice nurse was equally concerned that her breathing was strained during his visit and relayed to me that she did not look good. When Alice returned, she reported that my mother was vomiting-and this is dangerous because of her difficulty breathing. “I’m worried that she could aspirate,” Alice explained.

Of course this would happen now. My mom has been fine for weeks and months, but tomorrow I am flying out of town for four days for the wedding of a dear friend’s daughter. Once again, I feel trapped between the obligation to support my dear friend at a special time for her family, one whom I have not seen for 20 years,  AND my obligation to be ‘here’ for my ailing mother, who has been failing for 30 years.

I thought I would visit tonight, a quick one before my flight. But I had laundry and packing to do, and since she was sleeping anyway after her terrible day, I decided to stay home and prep for my trip.

I hope this wasn’t a bad decision and I hope my mother survives this weekend.

Did I mention that my aunt is returning?

My aunt, 92, is returning to visit her baby sister. This is a tremendous and very generous gesture and I, honestly, really appreciate it. I am pleased and proud that she is able to travel and fly and care for my mother at this stage in my mother's life.

Interestingly, I was not consulted about his visit. Alice, my mother's nurse, was not consulted either. The VNS and the Hospice Program that is overseeing my mother's care was not consulted either. My aunt's visit was ANNOUNCED to us. Once it was 'announced,' Alice requested that it begin on Sunday, 9/14, rather than late Saturday, 9/13.

I believe that request was honored, but I actually do not know. I was out of town today and was not able to call, chat, text and otherwise CHECK IN.

I think my aunt is staying 12 days, but I'm not sure. We'll see. 

I'm sure I'll hear plenty of feedback about what is working and what is not. I'm sure I'll hear many suggestions about what we could all be doing better. 

I'll let you know. I'll keep you posted.

Resting Bitch Face

Um,

I had never heard of this before until last night when my daughter explained to me that I have RESTING BITCH FACE and that this may explain why so many people whom I encounter, but who do not know me well, believe that I am mean.

I had no idea.

I was really hurt.

I was devastated!

Being a 1st grade teacher of young, impressionable children, this is quite a serious complication.

My mother is mean. My aunt is mean. My cousin is mean. My daughter can be mean. But I have never thought of myself as mean.

Rather, I pride myself on being clear, firm. and consistent. But I do not think of myself as being mean. However, many six-year-olds interpret these qualities as meanness. But, they are six.

But now, the world at large? This changes my whole perspective!

Actually, to me, RBF translates to: LOOKING UGLY!

My daughter is revealing to me that she believes that I have an ugly, mean, bitch face.

Great.

My feelings are really hurt. (Did I mention that?)

However, being a responsive and receptive person in her fifties, I consider myself open to hearing such (harsh, hurtful) opinions/criticisms and thus feel that I am open to the idea of making positive changes in my behavior and demeanor, (and to my face.)

Today, I went to school and adopted a constant, pleasant smile, trying to look open, affable and completely un-bitch-like.

My colleague, Tammy said, "You look psychotic."

Thank God for Ativan

A little more or less makes all of the difference in the world.

On a day when my mother does not have enough of her anti-anxiety medication, the world is ending: everything is awful, people are trying to harm her, she cannot laugh and she cannot see any light in life, at all.

On another day, with the proper dosage, she is cheerful, accepting and sometimes even humorous. I notice on these days, that she has more difficulty speaking and slurs many words as she speaks. Sometimes, it is difficult to understand what she is saying.

Still, overall, we prefer the slurred speech and cheerful attitude to the other option, the person I refer to as Mrs. Verderame or Eeyore, the depressed donkey from the Winnie-the-Pooh series. Mrs. Verderame was our neighbor when I was growing up in Chatham Green. She was wrinkled and bent, mean and scary-one of the grouchiest and unhappy people in the world. My mother often reminds me of her.

I suspect that MY AUNT does not approve of the use of Ativan for my mother. But, MY AUNT is not the person responsible for meeting my mother’s daily needs: talking to her, spending time with her, answering her nighttime calls, moving her, waking her, shopping for her, cooking for her, feeding her, toileting her, cleaning her, washing her hair, dressing her, wheeling her outside, checking on her, and attending to every detail of her health and well-being.

I am thankful for the effects of this medication. It makes the difference between possible and impossible.

I WANNA BE BERATED

I visit often (two or three times a week.) And, I call my ailing elder parent, my mother, every day.

I am wondering why I do this. I am wondering this because when I call or visit I am BERATED.

I am berated for a variety of things: my ailing elder mother’s condition, her health, the nurse’s cooking, the sub nurse, the other sub nurse, the fact that there are too many people coming to her house, the fact that there are not enough people coming to her house to visit, the fact that she can’t walk, the fact that she feels trapped, and mostly because, “this situation is unworkable.”  And this is, somehow, my fault.

Today I was berated because the dresser that was in my childhood room (for 46 years) was removed earlier this summer and replaced with a new one for my ailing elder parent’s live in nurse, who, for three months, had no place to put her clothes. The contents of the dresser were placed into storage bins and into a closet in a spare room.

My mother is “heartbroken” by this betrayal. She is furious that she wasn’t “consulted” and that all of these changes were made “in secret.” She is deeply disappointed in the nurse’s behavior, which is actually my attempt at making the nurse feel comfortable and at home in my mother’s house, in which she has lived since March.

My hat goes off to all of you who can endure this type of insanity from your demented and ailing elder parents on a daily basis and let the ridiculous accusations and hurtful stabs roll off your backs. Personally, it’s not fun for me to subject myself to such daily abuse EVEN though I know that my mother is not in her right mind and that she is not thinking fairly or sensibly or clearly. Each time I call her, I wonder why I have done so. It doesn’t make her feel better to talk or to vent to me and it certainly doesn’t make me feel better to be vented on or berated to. Is it healthy for her to wallow in her frustrated states and obsess about her unfounded concerns, at me?

I have read a lot lately about caregivers and health care professionals who believe that excessively medicating dementia patients is harmful for the patients. I find these theories fascinating and I would like to better understand the thinking. From where I sit, my ailing elder parent seems distressed and agitated about small things-such as: who bought the dresser and why the nurse’s personal belongings are in it-and if her state of mind could be altered and brought to a more peaceful and pleasant place with medication, to me, this seems like a good idea.

As it is now, my mother is miserable. She is making her nurses miserable. And she is making her family worried and miserable. And she is making me miserable. If increased doses of anti-anxiety and anti-depression medication were given, wouldn’t we all be happier?

Or, should I wanna be BERATED?