Giving Thanks

Our evening was just as Mom would have wanted it. Siblings and friends drifted in, visited with her, and were otherwise planted around the fire place in the lobby eating, drinking, and sharing. The lights in the lobby went off at 11:30pm so we set up camp by firelight. It was kind of perfect.

Mom had a quiet night in comfort and peace. Our amazing Lissa sat bedside while Gwennie and I got some shut eye. Her morphine has been increased today to prevent any respiratory discomfort, and she's become non-responsive. She'll throw a smile here and there when someone she hasn't seen in a while enters the room, but otherwise she's quietly inside of herself, receiving endless gifts of love and prayer.

I've spent a lot of time reading entries from the past, and it is strange to see where we were a year ago. In fact today we were delivered a basket created by the hospice volunteers, that a year ago this weekend, Mom spent preparing and delivering to families herself. I wish losing a mother on no one, especially as prematurely as this, but if it has to happen, I feel confident that we've created the best possible scenario. Today Gwennie and I shared in a ceremony of giving thanks with Lynn, Mom's trusted spiritual counselor. She anointed each part of Mom's body, and gave thanks for how each part has helped support and nurture us in our growth. It was incredibly meaningful to share that time together as mother and daughters.

We're all here, supporting one another, eating incredible food delivered by friends, drinking beers cold off Mom's porch, and taking turns visiting.

Energy is low, need to refuel (cookies + beer), but will update later this afternoon.

Transitioning

Since I last wrote, each day has brought a tremendous amount of change in my mother. She did not want to get up to her chair Tuesday or Wednesday, managed to sit in her chair for about 45 minutes yesterday and 20 today. She's stopped eating, but asks for sips of liquids or a bit of something smooth to "wet her whistle" from time to time. Swallowing is difficult and often invokes these little coughing spells where Mom cannot seem to comfortably clear her throat. For a while now she's had some audible congestion in the back of her throat, and found some relief with nebulizer treatments every few hours.

Confusion has been subtle, but pops up out of nowhere. She and I were talking yesterday afternoon and she said, "I'd like to take a vacation with my brothers and sisters." "That sounds lovely, where do you want to go Mom? Block Island?" "No. Too close. Too boring." Well okay then. We settled on a cruise to Chile. This wasn't even so much confusion as a sign that Mom was slowly transitioning to a place where she is more inside of herself, dreaming of how the next stage will be. These types of conversations about going away, vacations, changes, etc. are often a way in which the dying can express their desire to move on.

Today, she sleeps. Quietly and comfortably, Mom is snoring gently and listening to the Nutcracker on her iPod. Paul, Gwennie, and I had a meeting with her hospice team and we discussed the fact that she is truly starting to make her transition in to the dying process. This afternoon we will access her port and start morphine. Morphine is a miracle drug that serves many purposes, the most commonly known being pain, however morphine is excellent at treating respiratory distress. When people are passing away, they can experience what is known as "air hunger," which is a sort of gasping and rapid breathing when the body shouts to the brain "I need oxygen, breath MORE." Morphine blocks this function, allowing someone to be pain free, and breathe comfortably. If at any point Mom seems at all uncomfortable, she can get a small dose of morphine to relieve the symptoms almost immediately. For anyone who's lost a loved one in hospice, they're probably well aware of what a gift morphine can be.

We are all hanging in there. This isn't easy, but this isn't our mother, and that is so much harder to bear than the prospect of losing her. In the past few days especially, Gwennie and I have been able to make our peace and say our goodbyes. In our counseling with the staff here, they've all instructed us on the five steps of letting go, which are:

1. I love you.

2. Do you love me?

3. I forgive you.

4. Do you forgive me?

5. Thank you.

We've had the conversations at length and on many occasions, and she knows she has our permission to leave whenever she is ready.

In the meantime, I've thrown her schedule book out the window. We're setting up shop in the hospice family room, pulling together snacks, kleenex, family, and friends. The French do nothing quietly. Mom always said to me that when the time comes, she wants to be surrounded by those she loves and those who love her. Done and done.

We were visited by some chorus members from The Cobb School, Montessori where Gwennie and I both attended as children. They entered the hallways singing carols with a holiday arrangement and huge card for Mom. If only I could do justice to the look on the faces of the residents here. An impromptu holiday concert lifted all of our spirits, and even if Mom wasn't able to enjoy it herself, she made this happen by just being who she is.

Now we wait, talk, hold hands, cry, laugh, and eat Beth Holland's cookies (thank you!!!). Mom is at peace. We are at peace. Casey is lying right in the doorway of her room blocking the way: all is as it should be.

Housekeeping: Correspondence

Just a little request- email has gotten VERY difficult for my mother, however the more she continues to get, the more she feels she has to read and respond! Phone is no longer ideal. It is hard for her to hear and her faint voice does not travel well.

If you have a message to send to my mother, snail mail is wonderful and someone here can read the note to her.

McLean

Attn: Elisabeth Talbot

75 Great Pond Road

Simsbury, CT 06070

She also enjoys reading messages on the blog, so please feel free to write notes there as well.

If you do send an email, consider making the font at least 16 point, and email her at talbot07@gmail.com. You can also feel free to send messages to Gwennie or I and we will pass them on promptly. mmtalbot@gmail.com or gwennie.talbot@gmail.com.

Thank you for your understanding!

Little Battles, Big Differences

This last week has been filled with ups and downs. It seems that with each passing day, symptoms get a bit more severe and even simple things more tiresome. For example, Gwennie and I went on a pharmacy mission to grab up various types of reading glasses to see if any would help her eyes focus while reading emails. And of all things, dental floss became an issue. Her teeth feel tighter, and all the floss we had was either too stringy, not stringy enough, too smooth, not smooth enough, you get the picture. After days of trial and error, the little floss sticks were a major home run.

We roll our eyes when Mom starts a sentence with, "you know what I need?" but the truth is there's nothing we'd rather be doing than reading up on dental floss on consumer reports. This is why we're here, and every little effort people make to accommodate Mom's ever changing needs make such a difference in her daily life.

Because our mother is so proactive and such a fighter, our conversations of late have been about what does Mom feel like she has to do versus what she wants to do. For some, the answer might seem very obvious, but for my mother, who is an infinite do-er, it has been hard for her to slow down. We've talked about what enhances her life from here on out, however long that may be, and how does she want to spend the time she has. She continues with her acupuncture, meditation, and massage regularly, which helps control pain, stress, promote circulation, and allow for healing energy to be accessed. There's no question that these tools have helped and will continue to do so.

So the big question: when is enough enough? Imagine you had advanced, metastatic disease, and someone told you they thought if you followed their strict regimen of filtered water, supplements, smoothies, and therapy, you might cure yourself. Would you do it? Would you go to another country and do clinical trials? Would you be able to find peace or rather die fighting? How often are we forced to think about these things?

Ever since the first time cancer entered our family's daily vocabulary, people from all walks of life have offered up suggestions. With Mom's disease being as advanced as it is, she's taken a "well, then I just need to fight it harder" approach. She is truly unbelievable. If most of us were in her shoes, we'd put on our slippers and eat ice cream for every meal.

With all these symptoms, it has really forced my mother marinate in reality. I think she's realized that she can refocus her energy from working towards a physical healing, to just living the life she has in happiness and peace. Just when I think my mother can't amaze me any more, she recently said to me, "I just don't want to stop fighting because I don't want you and Gwennie to think I'm giving up. I want to set a good example." Sniffle...

I just had absorb that for a minute. It seemed CRAZY to me that she would be doing this all for us, the hours of therapy with healers, the timeless research on vitamix blenders and alkaline water filtration systems, the homework. All I could do was reassure her, that the decision to be less proactive is not to welcome death, but to move forward bravely and with grace.

Any book on death and dying will discuss the need to give permission for loved ones to go. But my mother is very much alive and living, and nothing prepares you to look one another in the eyes and have a discussion about giving it everything you've got, or just enjoying your time together.

Since my mother's decision to ease up on her therapies, it has allowed more time for visits with friends and family, which she believes is really where she draws the most quality of life from. We've been able to just sit for hours, and sometimes we're just working on our computers side by side, but we're present, and we're there together. We talk about how cheated she feels; wanting to see Gwennie graduate from college and me get married and become a mother. We acknowledge it is unfair and it sucks, but then we talk about those events in our future, and how Mom imagines those times, what she would say to us, how she would participate, and we know, that when those times come, she will be there and active in spirit.

My mother has only ever wanted to be the miracle patient who walked out of hospice. It has taken her a long time to absorb that no matter how much she does, she may not impact the outcome, but to do less, makes her no less a failure. She is brave, graceful, and is setting an example not to just my sister and myself, but to all of us. Perhaps the miracle won't be her physical healing, but there are other miracles happening every day. My sister and I are together, with our mother, almost every day. My mother has had the opportunity to make amends with people and emotions of her past. She's found a place for spirituality in her life that never existed so strongly before. These are the real miracles, and we are grateful for them.

Gestures of Love

I could dedicate a blog entirely to the kindness bestowed on our family these last few years. But Miss Mollie O'Hara, this post is dedicated to you.

Mollie is the daughter of one of my mother's Talbot Group counselors. When my mother first underwent chemotherapy, Mollie donated her hair to Locks of Love in honor of her. Mind you, she's never met my mother, and was 12, maybe 13 at the time. A few weeks ago, Mollie sent a letter to my mother with two drawings she did herself, citing that "one is for quiet times, and the other for happy times."

Mollie, I hope you don't mind me sharing your drawings and letter. They're too amazing not to. She wrote:

I have never even met you, but I love you because what you have done for yourself, my mom, and your company. You are in my prayers. It takes a lot of courage to do what you have been doing and I am proud to say that I have even an acknowledgement of who you are. I'm sorry I could not come visit you in hospice, but I guess it's not my fault that I'm not 18 yet. The best I could do was make you these pictures and send this letter to you. I hope it has made your day a little brighter, because that was my goal.

Well mission accomplished Mollie. You made not only my mother's day a little brighter, you make every day a LOT brighter because we have your pictures to admire.

This is one young lady who is destined to do incredible things.

And speaking of impressive pieces of creativity, an honorable mention is due for my Aunt Coco. Mom had mentioned that she has a hard time keeping things in reach and organized on her bedside tables, which is nothing new. It has taken a village to come to a halfway decent solution. First it was containers to keep everything gathered in, but those made the table to heavy for Mom to role. Then we tried little upright organizers with little slots, but still too heavy. Of late, we've had success with that rubbery gripper stuff cut to the size of the tables, so at least loose things don't slip off the table easily. But today, ah HA! Look what arrived...

It's a tool belt, covered in words that might come to mind when thinking of Mom. It's tied around the bedside table, and already holding purell, pens, remotes, kleenex, you name it.

A+ for creativity.

Recommended Readings

Thank you to everyone! You were spot on. The following three books were assigned to me when I took an elective in nursing school called "Care at the End of Life." I've picked them up a few times since because at each point in my life, they've meant something different. I would highly suggest any of the following:

On Death and Dying, by Elisabeth Kubler-Ross, M.D.

Final Gifts, by Maggie Callanan and Patricia Kelley

Dying Well, by Ira Byock, M. D.

Day by Day

Since Thanksgiving, we've noticed a few changes in Mom. They're mostly neurologically related, such as her left eye looks slightly weaker than the right, her double vision has returned, she has to lift her right arm with her left in order to extend that arm fully, and her right foot seems to move involuntarily while she is in bed. Her pain symptoms have morphed a bit as well, but remain relatively well controlled having increased her pain patch and added ibuprofen around the clock. The swelling in her legs is not concerning, and certainly improves when she spends less time sitting up in the chair. It is a lot of little things that we seem to chase, but put them all together, and the big picture reveals that overall things may be heading in a different direction.

It's hard to believe that Mom has been at McLean for a month now. She built up a lot of strength and energy over that month, and spent a lot of that energy and time crossing things off her list while she was feeling well. Although a bit less energetic this past week, she is still plugging away on a few projects that mean a lot to her, and despite some of her staff recommending she slow down a bit, she is really happy to be accomplishing so much.

And so we come back to balance, because despite the fact that we see physiologic evidence of change which could be considered decline, Mom is purely not ready to go there. Nor should she be. I've had the opportunity to sit in on a few discussions with her nurse, counselor, and doctor over the past two days, and despite these changes, she's made it clear she wants to continue living her life as best she can. We acknowledge, but we don't dwell. We breathe it in, then we move on.

This hasn't been as easy for me. I'll admit that at times I get fixated on my mother's physical health. I analyze and I worry. I get nervous that her continuing to push, fight, and believe means that she is in denial of reality. Sure enough though, mother knows best. She isn't in denial of the changes that are happening, she is just choosing not to be defeated.

We did an exercise with her counselor, where she asked Mom, "if tomorrow were your last day on earth, how would you want to spend it," and Mom said, "with my girls." Of course "tomorrow" was not her last day, because "tomorrow" is today, but you get the point. She is trying to live as best she can, without dwelling, and we are trying to soak up as much quality time with our mother as we can, without dwelling. Welcome balance.

I don't know what I would do without a hospice team to lean on. They've not only escorted my mother through this process, but my family as well. We're not the first to be winding down this path, and they're understanding and knowledge keep us empowered.

Thank you Beth H. for pointing out the excellent article in the New York Times yesterday about hospice. And if you're a 60 Minutes fan, there was a fascinating segment on about the cost of care in terminally ill patients (it is also very pro-hospice).

These concepts and ideas are hard to wrap one's head around. I remember right before my mother's mother passed away several years ago, and many of us felt unsure of how to act or what to say to my grandmother. Mom on the other hand, was a natural. She never shied away from the topic of death, dying, wishes, amends, and tears. She passed around a book to all of us that I would highly suggest everyone read, regardless of whether you've lost or are losing someone in your life. I'll give a hug the aunt or uncle who names the title first because I'm having a serious brain fart at the moment.

I'm heading back to McLean now, with clean laundry and lots of obnoxious holiday decorations for Mom's room, which is looking beautiful by the way. See for yourself...

Mom's gallery continues to grow!

And her desk is filled with books, pictures, and cards from all of you.