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. 

I LOVE Hospice!

So, it started today, officially: Hospice. I got a call this morning that our new social worker was coming to meet my mother today at 1. I arranged to be there.

Shortly after Guay’s visit, Charles, our new head nurse arrived. Both are amazingly interesting, attentive, caring and, well… cool people. Guay is thin and stylishly dressed; and she was clear, honest and direct with my mother. Charles is tall, lanky and longhaired. He was great: very respectful, very polite and very gentlemanly.

Guay told me that she could see that my mother is clearly demented and living someplace in the past. She questioned her and was gentle, but responded honestly to my mother’s concerns about how she is being treated by Alice and me. Guay said, “You are weaker now than you were before, and less able to do what you used to do. I can tell that you were an independent woman, and I understand that this must be very hard for you.” Later Guay told me that she is here as much for Alice and for me as for my mother. Yay! AND, she offered to call my aunt for me and speak to her about the Hospice program to address the resistance to Hospice that I am feeling from her and from my mother’s other relatives.

Charles all but kissed my mother’s hand upon meeting her. He was very attentive and polite, and my mother was honored.  He gently checked her physically, carefully asking permission before he listened to her breathe, took her blood pressure and examined her feet, among other things.

Charles will visit about once each week. He will be in touch with Alice and with my mother’s doctor about her medications, her sleep and her progress. We are to call Hospice if we have ANY questions or concerns, any time of day or night.

The Hospice team meets every week and every other week they will discuss my mother’s case. She will be cared for by a neighborhood team: the social worker, the nurse and the spiritual care counselor.

I love the team approach, I love the respectful demeanor of the staff and I love the feeling support that I now have.

The final days and last hours of life

What are the final days and last hours of a person’s life like? 

People who have experienced it know, I guess. But those of us who have not been at a deathbed do not know what to expect. I remember my mother telling me about my grandmother’s last days. She was asleep in bed for a long time and it wasn’t clear if she was alive or not. Her devoted aides would periodically place a mirror in front of her mouth to see if there was evidence of breathing. Eventually, there was not and she was gone.

The pamphlet that the VNS gave us indicates the following ‘situations’:

• ·     No appetite
• ·     Urine output decreases
• ·     Arms, legs, face are cool
• ·     Person cannot be aroused
• ·     Breathing my be noisy
• ·     Breathing patterns may change and be faster or slower
• ·     Depth and frequency of breathing decreases more and more until the heartbeat stops
• ·     Eyes and mouth may be open

Family should stay calm and hold the person’s hand. Family should also continue to speak as though the person can hear and understand. Family should be reassuring. The dying person will feel love, support and honor. 

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We are in HOSPICE now…

The HOSPICE team came today to enroll my mother. The team consisted of two nurses, Olong and Nancy . They were pleasant and carried huge backpacks. When I arrived, everyone was sitting around a small table in my mother’s living room. Nancy and Olong were describing the program and benefits, and explaining what would be different, insurance-wise and medication-wise with Hospice. Apparently all future medications are dispensed through Hospice, which may include some changes. My mother was receptive to the idea but was confused about ‘what would be different’ with “palliative care.” Both nurses were careful to use terms like ‘comfort care’ and ‘stay at home care’ rather than ‘end of life’ care. The team is reachable 24 hours a day and will supply us with an emergency kit to deal with anything that may come up. I asked about falls and bone breaks. The team can even treat that at home without surgery or resetting the bone. Amazing.

The nurses left a pamphlet of emergency, WHAT TO DO’s. From this I learned about some common problems and behaviors at the end of life. Some of the situations mentioned are: constant fidgeting and moaning, complaints of pain, acting cranky and moody, having difficutly breathing, making strange noises while breathing, having a decreased appetite, refusing to eat, experiencing nausea and vomiting, no longer urinating or having bowel movements, anxiety, feeling confused and agitated, feeling restless (and talking about needing to go somewhere, having to leave, and believing someone is waiting for them,) saying hurtful things, hallucinations (!) acting as if in a dream world, acting tired, sleeping more, having difficulty waking up, napping, staying awake all night.

Many of these behaviors mimic dementia, making it all very confusing to know what is going on. Regardless, I think she is in a good place and will be able to stay home no matter what happens.

"I'M OKAY"

When I call her daily, after, “Hello,” the second thing I always say to my mother is, “How are you?” I always ask cheerily and with hope. Her answer is almost certainly something to the effect of, “Not good,” or “Terrible,” the Eeyore response for Winnie-the-Pooh readers. I then have to follow with words to the effect of, “Oh, what’s wrong?” or “I’m so sorry, Mom.”

To my surprise, I called earlier this week to inquire about her health that day and she responded, “Okay.”  My jaw dropped. I was speechless for a moment. That was the first time I had had a non-negative response from her since January of this year. Seriously.

My mother’s friend Pat, from Seattle, was visiting for a week. Pat was the best medicine possible. My mother was, during Pat’s visit, alert, talking, making jokes, understanding jokes, remembering things-it was amazing. Pat really brought her back to reality, to herself and to us.

Pat showed us the power of positive love.