I Lost 20 Pounds! (In 4 months…)

This past summer, I was feeling fed up with myself about my weight. I felt that I was surrounded by people who had wrestled control of their body weight, and, who were feeling and looking good.  I was ready.

I considered joining Weight Watchers, again, but decided against it because going to meetings is time consuming and weighing in is stressful for me. It just doesn’t work. I didn’t feel that I would be successful.

On TV, Dr. Oz has a new plan for successful weight loss each week, but none felt just right to me. I’m not sure I trust a person who embraces 52 weight-loss methods per year.

So, I Googled other options. I found a blog post by a woman whom I do not know and cannot contact other than via twitter (I will ask my son to help with this.) The title is: HOW I LOST 20 POUNDS IN ONE MONTH.  That wasn’t my goal, but I read the article anyway. What I learned from this woman is that everyone one is different. What works for one person, may not work for another. Each of us must figure out what will work for us.

This is so true! I know what my Weight Watcher diet is, even if I’m not participating in a plan. I know how many points I can have, and I know how much food and what kinds of foods I can eat each day.

I also know that I must exercise regularly. I needed to develop a sustainable weekly exercise plan that is enjoyable. I do two yoga classes each week and I run one to three times a week, weather and daylight permitting.

The blog woman said to develop a daily morning workout routine. She does 20 minutes per day. I cannot do 20 minutes per day on workdays, but I can do 5 minutes per day. That’s workable. I developed one, that meets my needs, and that takes 5 minutes. And I do it everyday.

I did not lose 20 pounds in one month. I lost 20 pounds in 4.5 months. But, I lost 20 pounds! And I feel great! Having clothes fit well feels better than any food tastes.

What is interesting to me is that my weight was so, very important to my mother my whole life. She was constantly disappointed that I was not thin and fit. As much as I wanted to be so, it was impossible for me, despite 35 years of trying. I had a few temporarily successful attempts at weight loss, but none lasted long.

However, this summer, when my mother could not notice or acknowledge, finally, my success, I was able to stick to my goals and to reach my goal weight.

I guess I did this for me and not for my mother or for anyone else.

Go, me!

Good to know:

·     After a person dies at home, you call the primary care doctor to inform her/him.

·     Then you call Hospice, to alert the Hospice doctor and the Hospice team.

·     Then you find a crematorium or funeral home to take the body away. We used Greenwich Village Funeral Home. They came after four hours and were respectful and efficient. They prepared the death certificates for us and had them ready after four days. But we still have no ashes after 7 days. This is not cool, IMHO. (I don’t want the ashes, but my daughter does.)

·     Then you clean out the house of the deceased and try to put it on the market. (I’m leaving the furniture so that the apartment shows better. All of my mother’s possessions went to a holiday fair to benefit a church that we love.) We had help from close friends and family and we worked like dogs, through dust, to get this job done.

·     Then, daily, you answer many emails and calls from people that knew the deceased (even if you don’t) and you are polite and comforting and you describe the end in as much or little detail as you see fits the person calling.

·     In your down time, when you are not working, you try to process the reality of the fact that your parent is dead.

·     You call your therapist and see if you can be seen. My therapist was able to make time for me (suddenly, thankfully) and I will see her next week

·     You may call your spiritual care counselor to touch base with that person. With VNS/Hospice, you get one session. I also have appointment with my mother’s spiritual care counselor for next week.

·     You get legal counsel. I have an appointment with OUR attorney for next week to transfer funds, accounts, deeds, etc. I have no idea how to do this myself. I hope that he will help me.

·     You ask your spouse/partner to call the bank, SS, insurance companies, etc. and deal with being on hold for four days, only to be told that the funeral home has already notified them of your parent’s passing.

Post Mortem

What I find most interesting about the 9 days since my mother passed away is the sadness I feel.

Many people have been sympathetic and supportive, and as a result, things have seemed surreal. I get hugs at work, cards in the mail, emails from people I do not know and many phone calls-some from folks feeling guilty for not knowing or for not having been in touch and then, I am comforting them. Interesting.

But, somehow, hearing from all of these people makes me feel sadder because they are so sad. I wonder if I would feel as sad just on my own, without the influence of the outsiders.

Most of the outsiders view my mother as this magical, amazing person. It’s wonderful and refreshing! Some cherish moments with her, meaningful conversations and pure joy about who she was for them. It’s fantastic.

But, I think maybe these amazing reviews of who my mother was for them makes me feel hollow and empty inside. I am partially sad because she was not this way for me for a long time-quite the opposite in fact. And I am partially sad because other people feel attachments and loyalty to her that make them closer in some ways, and yet not close at all in that they were not around in the end and did not experience the real person that those who were close to her did. I feel false in pretending to feel as much of a loss and sadness as they supposedly feel.

It’s all so complicated!

And, despite my anger and resentment, my regrets and my remorse, I am stunned by the suddenness and the finality of my mother’s death. The person that I have had to contact daily, to worry about and to monitor, to deal with, to negotiate with and to argue with, is now gone. I am free from responsibility, but I am also alone now. I cannot speak to her ever again, either to complain or to apologize. It’s over. Forever.

And that makes me sad.

Relieved, free, done.

But sad, too.

What happens after death for a hospice patient at home

Many elderly people die in hospitals and nursing homes, but that was not our experience and therefore, I cannot write about it.

My mother died in a hospice program at home, so I can only describe our experiences with this scenario.

Although my mother’s primary care physician was also her hospice doctor, this is rarely the case. Hospice also assigns a back up doctor, or hospice doctor, for patients in need of a doctor for their duration in hospice. Once my mother died, the home nurse(s) placed a call to hospice to report her death. My mother’s hospice doctor then “called it in” so that the death was recorded. I’m not sure who gets the call, but it is recorded somewhere.

We, at home, had to call a company to take my mother’s body away. She wanted us to use a crematorium, but the number she left was no longer active. We Googled places and found a funeral home in Greenwich Village that also cremates bodies. We call them, secured their services, and waited for them to come.

After about four hours, two men arrived with a long gurney to take my mother away. In the interim, each of us had spent time with her, kissing her, holding her hands and saying goodbye. By the time the men arrived, we were eating Mexican food and drinking wine and champagne, having and impromptu celebration of my mother’s life. The arrival of the funeral home men seriously dampened the mood of the house quite quickly. Interestingly, no doctor came to our house to declare the death. No body had to be transferred to the hospital for verification of the death, and no one seemed to check to see if the deceased was, in fact, actually dead.

Two days later, I went to this funeral home to pay the bill, to order death certificates (20 @ $15/each) and to pay for the cremation services.

The certificates take two days to come; the ashes take longer, like five days.

I do not have them yet. “We’ll CALL you,” they informed me.

OK. Thanks.

The funeral home is clean, fancy and attractive. The employees wear suits and ties and look very professional. We got special parking passes while we were there.

So, I have the 20 death certificates but no ashes.

My daughter has ideas for where the ashes should be spread. I am glad because I had no ideas and was not even going to ask for the ashes, or for a container for them.

We hope to get the ashes sometime this week.

I have no idea how we can possibly know for sure whose ashes we actually get. I’m also not sure I really want to think about this.

More details next post.

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?

My Irascible Mother and My Bullshit Button

Ok.

I understand that your thinking is not rational.

But, your complaints about your nurses are identical. How can it be that four different nurses are UNWORKABLE, RUDE, UNCARING, and UNFIT?

How can I be expected to be attentive and understanding when what I hear every day is like a berating of the measures we have provided to accommodate your wishes to stay home and to be treated with dignity and respect? How can so many caring people be doing such a terrible job? How can it be that even trusted employees and family members who have cared for you have tried to mistreat you and steal from you?

This is insane!

YOU are insane! Clearly!

How can I be expected NOT to ignore your rants and complaints and NOT to detach from you and your crazy assertions? You are irascible!

Is this how you speak about me to others?

This is SO hard!

You make me crazy.

You make me hate you.

You make me envy Kathie Ritchie.

I need a BULLSHIT button that I can press when it is time for me to lie. If I had one, I could say, YES and HUH and UM and REALLY… when I need to so that I can keep my huge mouth, that wants to be truthful, shut.

Mom, you have no idea what is going on. You have no perspective. You do not realize how lucky you are and how bad things could be for you. You do not appreciate the fact that you are home, with your familiar things and your furniture and with people who are attentive  to your needs. If you were to switch places with my mother in law, Marilyn, for ONE day, in her nursing home, with no friends, no things and no visitors, you would go insane.

You do not realize that you have, not one, but TWO terminal illnesses and that you are NOT going to recover from and be able to walk and go wherever you want, whenever you want and to think and talk and function on your own. It’s NOT going to happen. You are in DENIAL and I do not know what to do about it. You don’t remember what we tell you and you don’t understand what professionals have said to you.

I don’t know how to help you.

And the sad thing is that all of these arguments and all of this tension simply detracts from the real business that we should be attending to: speaking honestly about our feelings and how we want our relationship to be at the end of your life. I am willing to bear all and to come clean, but that cannot happen without your willingness and ability to realize where you are and what is happening. And if it’s not possible for you to do that, then the end, for us, has already happened. 

And the rest of this is just bullshit.

Four Birds on a Tree Branch

Yesterday was a low talking day for my mother. Her voice was not strong and she seemed to strain for breath.

Earlier, on the phone, she has asked me to type up clarification about “this new program I’m in,” to help her remember what hospice is, what it does and what is different for her.

It’s hard to know how honest to be with her about her condition. When I explained hospice to her, I called it ‘palliative care’ because hospice has such a strong association with dying. And, really, hospice is about the care of a patient, helping to make him or her comfortable during terminal illness. Hospice is not a death sentence, it’s a pledge to care and to comfort.

My mother is either forgetting the seriousness of her conditions or is in denial about her prognoses. It’s likely that her bewilderment is a combination of both.

Yesterday she remarked, as she often does, that she’s tired of being sick and is anxious to get better.

Later, in the same conversation, she looked out towards the sky and told us that she envisions four birds on a tree bark (we assume she meant branch) waiting to fall.

“Evelyn was first, so that’s minus one, and now I am waiting to fall,” she said.

Here is a perfect example of how her brain is operating: my mother can make a beautiful analogy like this, but have it mixed up. Evelyn was the first of her cousins to become ill, but she is alive and living well at home with an aide.

Still, I am happy to have this lovely way to describe her circumstances to her. I wonder if she will remember the picture in her mind of the four birds on a branch.

Families Fractured Over Health Care and End of Life Decisions

“Many families are broken over elder-care and the inheritance after death,” my daughter informs me.

“Really?” I ask.

This seems to be happening in our family.

“Yes,” Elsa replies. “Look at Melody’s family. Her mother’s siblings are suing each other over their mother’s estate. One child feels that he did not inherit enough.”

This is sad. I know that it happens. In a way, it is happening to us.

I have no siblings, so my mother’s estate is not an issue. However, making decisions about her care IS the issue that causes conflicts.

There is a lot of tension and resentment between me and mymother’s sibling, my aunt.

My aunt is an opinionated person. She is intelligent and fairly informed. Even though she is older than my mother, (92) her mind is sharp and intact. She would like to be in charge of my mother’s health-care decisions, despite the fact that she lives 610 miles away. Even with her age, she has been willing and able to travel to see my mother several times each year, to visit, to keep my mother company and to be a support. It is kind, generous and lovely for her to do so. But her visits can also make life hard for me, for Alice and for my mother.

My aunt is distraught about many things concerning my mother’s care. She feels that Alice and I do not stimulate my mother enough. She feels that my mother does not get out enough. She feels that my mother does not exercise enough.  She feels that my mother does not converse enough. She feels that my mother does not have the opportunity to make decisions any more. She feels that Alice’s cooking does not excite my mother’s palette and therefore does not entice her to eat enough. She believes that my mother is not exposed to the news enough, either by having the opportunity to read the NY Times herself or by having articles read to her. My aunt wants one of us to deliver the paper daily.

My aunt makes good points. I hear what she is saying and I try to implement many of her suggestions as best I can. I ask Alice to make sure my mother’s music is on. I ask Alice to take my mother outside on nice days. I bring the paper over when I am done with it and am visiting. But, I am not my mother’s primary caregiver. I’m like a middle-man, and I try to support Alice, while making sure my mother’s basic needs are being met. I know that Alice is dealing with many other things besides the NY Times, including the daily routines, like teeth brushing, which may happen several times each day because my mother does not remember doing them and asks to do them again. And again. And like using the toilet, again and again. These activities are time consuming and can take hours and hours. And this can be my mother’s morning, or her afternoon. This is what Alice is doing with her, instead of fulfilling the needs that my aunt has deemed so important.

What is FRUSTRATING to me, is that whatever Alice and I are able to do, including periodic implementations of my aunt’s suggestions, is not enough. My aunt always has more that she believes needs to be done for my mother. Further, my aunt truly resents the decisions I have made for my mother, specifically the decision to enter her into hospice.

“How could the doctor recommend hospice without having seen her?” she asked. “Whose idea was this?”

The inference, of course, is that I am giving up on my mother and not ‘going the distance’ for her. I want her to die. I want to kill her off. I am ‘prepared’ for her death. Her death will make my life easier.

Well, my mother’s doctor actually explained in May that before long, hospice would probably be in order. A visiting nurse actually suggested that we enroll in hospice at the end of July. Three hospice nurses actually visited and interviewed my mother in August and felt that she was appropriate for the program. So, here we have numerous professionals who believe that this is the right course of action for my mother, although my aunt disagrees.

I feel badly that my aunt is so disappointed in this recent turn of events. But, I also feel that it will be impossible for her to accept the issues that my mother, and Alice and me, are actually facing. Denial is very popular in my mother’s family and I suspect that my aunt’s reactions to these developments are denial-related. It must be awful to think about one’s baby sister as being terminally ill. But considering their ages, I think it’s reasonable to expect death as inevitable, eventually.

On the other hand, I believe that my mother and her sister and cousins have been remarkably lucky that they are all alive and able to speak on the phone daily at ages 89, 90, 91 and 92. I sense an absence of appreciation on their parts that this amazing phenomenon continues. If I were this age, I might expect it to end any day. But they seem to feel it’s their right to continue speaking daily, and if any health issue or technology issue interferes, it’s someone’s fault.

Crazy as it sounds, I believe that I am being blamed (by my aunt and her cousin) for my mother’s failing health and subsequent inability to think clearly, to speak clearly or to answer phone calls. If my mother cannot function, it is because I have over-medicated her or I have not stimulated her enough. I have not provided pleasant meals, outings or other things that she needs.

Amazingly, I am a working mother, daughter and wife. I believe that my primary responsibilities are to meet the needs of: 1. my children, 2. my husband, and 3. my employer (and my young students). I am the daughter of an elderly woman for whom I have made sure the bulk of her daily needs are met. But my mother’s care is not my primary job and, honestly, it is not my primary concern. She has had a long life and has lived well for many years. She has not been happy for many of those years and for that, I am sorry, but not responsible. Regardless, she has had her many, many years of life prior to her current illnesses.

So, in our family, we are not fighting over money as much as we are fighting over power and decision-making rights. We are fighting over what are reasonable health-care decisions based on my mother’s conditions and prognoses. The cost of these conflicts is the strain in the relationships between my aunt, her children, (my cousins,) and me. We used to be very close and supportive of one another. There used to be lots of communication: visits, texts, emails, Facebook messages, phone calls and abundant support.

In recent months, that support and communication has evaporated. I believe that the evaporation centers around my aunt’s unhappiness about my mother’s current condition and my aunt's beliefs that I am a bad daughter and a poor care giver. I believe that she has influenced my cousins. I believe that now our small family is fractured, just as if we were in disagreement over a will or an inheritance.

It doesn’t have to be this way, but at this point in time, it is this way. I accept this.

But it is sad for all of us.