You Never Forget…

There is something uniquely inexplicable about a mother-daughter relationship. It can take on many forms and evolve over time into something completely different, but it’s a sacred connection that can only be understood by women. For me, that relationship was one of student to mentor, authority to rebel, war to peace, respect to admiration.

Me and My Mom circa 1958

Me and My Mom circa 1958

My mother was a strong personality with very clear ideas of how things should be done. Her beliefs were strong and unwavering. And because she was so set in her ways I rebelled and we often clashed. To say our relationship was tumultuous would be an understatement. I was the ying to her yang, only there was no seamless joining of the two. In a way you could say I was just like her and in a way her polar opposite.

I laugh when I think about it now, all those times I felt my way of doing things was so much better and the lengths to which I would go to try to change her to my way of thinking. It wasn’t going to happen – for either of us. We recognized it, we fought it but in the end it never affected the unconditional love we had for one another. She was my nemesis and my rock and she taught me all I know about being a strong, secure woman.

Today is the seventh anniversary of her death and I still remember holding her hand as she took her last breaths and the tear streaming out of her left eye as she exhaled for the final time. I felt blessed knowing that for the length of our relationship on earth, it was she and me when I came into this world and she and me when she left it. I knew she wouldn’t want it any other way. It was the best gift my mother ever gave me.

Mom and me in Las Vegas circa 1999

Mom and me in Las Vegas circa 1999

Today the pain is much less intense. There are even days when I don’t think of her, but those are few. I know she is with me, I feel her. I talk to her and she answers me in very visible ways: Please mom, help Mia be more comfortable so that she’s not continually shaking her ears until we can take her to the vet tomorrow – Mia lies down and has a peaceful night. Please mom, make the operation on my back a success so that I no longer have pain in my legs – the operation is a success, the pain is gone. Please mom, intercede for us so that the rain holds off until our special event is over – the rain holds off and starts immediately after the event has concluded. Please mom, let the predicted bad weather hold off so that I can have a safe plane ride – the predicted bad weather never occurs. Please mom, help me deal with the pain of your death and let me know that you’re ok – the Celine Dion song “I’m Your Angel” immediately begins to play on the car radio (that one reduced me to a crying fit that necessitated me pulling off to the side of the road). She is with me in spirit and of that I absolutely have no doubt.

So today I honor her. The first lady on our block to go back to work. The first lady night manager at the bank where she worked. The mother who made sure both her children went to private schools and saw to it their college educations were paid for so they did not have to work and could focus on their studying. The woman who stood by her husband when he battled alcoholism. The mother that I could rely on no matter what, time after time after time.

I love her, I miss her, a part of me died with her, a part of me carries on for her. She occupies a special place in my heart and will for as long as I live. She is my angel.

My Beautiful Mother

My Beautiful Mother

Old Friends, The Ultimate Comfort Food…

We are a very mobile society. People change careers like they change their clothes and move all over the world as if it were only next door. Years ago, if anyone told me that I would be living in Colorado during the latter stages of my career I would have laughed. But today’s world is far different from that of my parent’s who chose a company and a career and stuck with it all during their working lives. Today families and friends are spread out throughout the world and although in many ways it is exciting in some ways it can contribute to not being able to capture the comfort of feeling at home.

But really, what exactly does the word “home” mean? Some would say home is where you grew up, some would say home is where you live now and others might say home is where the heart is. I say it is a combination of all three. And never was that more apparent than this past week when a bunch of old friends got together for a vacation trip to Santa Fe, New Mexico.

It all started out innocently enough with a bunch of us talking about getting together. Some friends from Chicago visited the Boulder area last year and we discussed the possibility of getting a larger group together to go “somewhere”. And you know how those things often go, lots of conversation and often very little action. But this time it was different. This time the email conversations became more specific – when could we do this, where would we like to go and for how long. The suggestions started, then the schedule conflicts, the counter offers, the semi-decisions, changes of dates, where to stay, and on and on and on until all of a sudden – bingo – we had a plan! But a plan is only as good at the commitment to it and once the first airline reservation was made the chain reaction occurred and everyone was on board.

And although it took time and energy to get it off the ground, we finally did it last week. Nine old friends from Chicago got together, people who had known each other for decades, lived within walking distance of one another, worked together, partied together, stood up to each other’s weddings, helped each other remodel their homes, watched the Bears win the Super Bowl together, celebrated holidays together, went out to dinner together, had disagreements and fights – all those things that are normal human experiences at the time but wind up being so much more than you even realize. All these people got back together for a reunion.

Now reunions can be tricky. As one of our friends said, “I’m not a big fan of reunions. They are created to celebrate the past and I’ve always lived my life moving forward.” And I think for that reason reunions can be disappointing and often bittersweet. But our reunion was far from that. What I discovered during our four days together was even though we had all been apart for a very long time, it was not simply about “reliving” our past relationships but also very much celebrating who we are now and enjoying each other all over again for the gifts we currently bring. And that is true, long lasting friendship – knowing you can move far away, grow progress and change and still say – ” I really like you for who you are now and I still want to be your friend”!

And so we recalled the many things we did together, laughed until our stomachs hurt, drank too much wine, ate great food, reminisced about the old days but also enjoyed each other as the people we are today. We were aware that a lot of time had passed and yet it was as if no time had passed. What a great group of people, old friends and yet new friends. No stronger bond can you create with other human beings and I have no doubt that wherever life takes us in the upcoming years, these bonds will never be broken. I am so proud to have such a great group of friends.

The Chicago friends - photo courtesy of Dan Miller

The Chicago friends – photo courtesy of Dan Miller

The Gang - photo courtesy of Dan Miller
The Gang – photo courtesy of Dan Miller

Five Years Ago Today…

I held her hand. I told her not to worry about me. I told her she had raised a strong independent daughter who could take care of herself. I told her to go to dad. Then I made one final request of her. I asked her for one last Christmas gift. She and I had been together when I came into this world  – I asked her for the gift of being together with her once again when she left this world. Her breathing became shallower and shallower. Soon the breaths were so shallow I knew they could not sustain life. One last small breath, a tear ran down her left cheek and she was gone. Peaceful, quiet and eerily beautiful. At that moment, my mom gave me the most precious gift of all.

I cannot think of a better way to honor her than to reprint what I blogged the day after she died. It captures all of the emotions I felt and continue to feel to this day.

WRITTEN NOVEMBER 15, 2006 

Euphrasia Dolores Miksis Drabik – born September 23, 1922 – died November 14, 2006. How do you even begin to put into the words this very special life?  She was one of four children (the baby) of Apolian and Marcella Miksis (Victor, Genevieve and Bernice), born in Chicago and lived under very modest means on the south side of Chicago (a large Lithuanian stronghold at the time). She married Edward Joseph Drabik (1915-1998) and had two children, Robert (1947) and Janice (1951). She lived in Chicago until she retired with her husband to Clearwater Florida in 1982 and moved to Colorado to be near her daughter in 2004.

The Last Picture of My Mom taken September 22, 2006

Mom, I miss you terribly already, but I am at such peace because you are not suffering any longer. I had two + great years with my mom here in Colorado. We went shopping, went to movies, saw plays had regular ladies nite out dinners – and I was blessed to have had the opportunity to really spend some time with her after living far away from her for so many years once she and dad moved to Florida. She always felt I was going to follow them down there, but little Jan who always had a boat load of independence decided that Florida was not for her and lived in Chicago, Dayton, Ohio and now Boulder, Colorado.

I had never experienced a death before and so I was really not sure what to expect and how I would feel about it. Yesterday started with a call from Hospice. They asked if I wanted a nurse to stay with mom all day, because they had one available. I jumped at the chance, because I had planned to be there all day as well, and knew I would appreciate not only the company but also the professional assessment of mom’s condition.

We sat all morning and chatted about mom. There were some changes in her condition since the nurse spent the day with her on Sunday, but nothing to indicate eminent death. The nurse was quick to remind me that those conditions could change at any time, and could change rapidly.

At about 11:30 am, the nurse suggested that I go out for a while and grab some lunch. I decided to do so – nursing homes are tough environments to be in when you are sitting at the bedside of a dying person.I was just finishing when I got a call on my cell phone – some things appeared to be changing, they recommended that I come back. I got back relatively quickly, and to my untrained eye I could not notice any type of change. But they told me that her heart rate had increased significantly and that her breathing was changing.

So, I sat by her bed and held her hand. I told her that she was the one who was there when I entered into this world and I asked her to give me a final Christmas gift – to let me be there when she left this world. I kept encouraging her to go, I told her daddy was waiting, I told her that I would be ok, and I told her that she should give in and be at peace. Over the course of about 20 minutes, as I continued to talk to her and to hold her hand, her breathing became more and more shallow. It finally got to the point where her breaths were so insignificant that it made me wonder how that little amount of oxygen could sustain life. Then there were a couple of more very shallow, very small breaths, and nothing. A tear streamed down out of her left eye, and it was all over.

When I came back from lunch, not only was the nurse there who was assigned for the day, but mom’s regular nurse, the hospice social worker and a nurse being trained to do bedside assessments. She had a room full of people, pulling for her to be out of her pain and wishing her a speedy journey to dad. I have to say, although I was fearful of what to expect, it was the most beautiful experience of my life. My mom gave me the ultimate gift, and I will always be grateful to her for sharing her last moments of life with me.

Since last Wednesday you could see that she was accepting what was happening and preparing for the next phase of her life. On Friday she asked me what was happening to her. When I asked what she thought was happening to her, she said, “I’m dying”, and I told her yes. With tears in her eyes, she told me that she would not be able to go Christmas shopping with me, and with tears in my eyes, I told her that she would always be able to go Christmas shopping with me, because for as long as I live, I will always have her in my heart wherever I go and whatever I do. She smiled.

On Monday I had both my aunt and my brother talk to her. I held the phone by her ear and they told her it was ok to let go. When she heard my brother’s voice, she opened her eyes and I got cognitive recognition. I said hi to her, and she very weakly and softly said to me, “I love you.” Those were the last words I would ever hear her say.

Today we will finalize the arrangements and my last job is to get her back to dad. I can’t believe that it is over, and yet I am so happy that she is finally out of her pain. This journey was a tough one, but she handled it with grace and a positive attitude. I truly believe that until this last week, she thought she would beat this thing and walk out of that nursing home. She was a fighter until the end.

Euphrasia Dolores Miksis Drabik – born 1922, died 2006. I love you with all my heart, mom. And until the day that I die, you will live on in my heart. I am counting on you to be my guardian angel now. It’s a dirty job, but I know you are up to the task. Thank you for everything, mom. I will always love you.

Your baby,

Janice Marie

 

 

Her Last Day…

She died on a Tuesday. The day began just like most with coffee and the newspaper. The phone rang. I jumped. I had this feeling it was going to be the call. But it was only the hospice nurse asking if I would mind if she spent the day in my mom’s room evaluating my mom. She wanted to bring a nurse in training so that she could learn more about the latter stages of hospice care. I was thrilled since I planned to be there all day and would love the company. For the past few days mom had only snippets of consciousness and although I knew she knew I was there it was still a lonely vigil.

Me and mom on my wedding day circa 1982

The last time I had any substantive type of conversation with my mother was the Friday before. I brought my laptop with me so that we could watch our favorite holiday movie – the George C. Scott version of “A Christmas Carol.” My mom and I must have watched this movie a thousand times over the years and we could almost say the lines verbatim. I pulled the tray table over to her bed and we began to watch. At first she seemed happy to be watching the movie once again. She even said some of the lines as she would normally do when we watched it. About half way through she began to say, “I’ve never seen this movie before – I’ve never seen this movie before” and she began to get agitated. I decided to stop playing it and put the laptop away. I sat on her bed and she looked at me and asked, “Jan, what is happening to me?”

“What do you think is happening,” I replied. “I think I’m dying” she said. I shook my head to say yes. She got tears in her eyes and said, “I’m sorry I won’t be able to go Christmas shopping with you this year.” I looked at her and said, ” Mom, you will always go Christmas shopping with me because I will always carry you in my heart.” She smiled, closed her eyes and went to sleep.

The last food she requested to eat was orange sherbet, the last words she said to me were “I love you.”

On Tuesday I spent the entire morning in her room with the hospice nurses just talking about mom, her life, her recent struggles. As we talked the hospice nurse explained that if my mother wanted me to be there when she died that I would. But if she didn’t then I most certainly would not. In her experience she had all too often seen family members keep vigils over dying loved ones only to walk out of the room for a minute and come back to find that they had passed away. She wanted to prepare me for the fact that my mom might choose not to involve me in the process. I was fine with that. I wanted to be there for her but I also wanted it to be easy for her, if that was at all possible.

At about 11:30  a.m., the hospice nurse suggested that I go out and get some lunch. She felt a change of scenery for a short time would do me good. She told me if anything changed that she would call me on my cell phone.  I was just finishing lunch when my cell phone rang. Her heart rate had changed and her breathing was becoming more shallow. I needed to get back to the nursing home as soon as possible. Five minutes later I was there. I walked into the room but nothing really seemed changed to me. I walked up to my mom’s bed, sat next to her and took her hand in mine. The dying process began.

Perfectionism…

My mother was a perfectionist and that is where we differed the most. Everything had to be perfect – from her penchant for ironing underwear and socks, to using a toothbrush to clean the baseboards around the floor to folding military-style corners on bed sheets to having perfect attendance at work. She was very disciplined and tried to instill that into her daughter. Unfortunately her daughter was just not wired that way.

I have to say that eventually some of it did rub off and I am grateful for that. I learned the discipline to get things done and to work hard but the rest was just not for me. I would watch as she would meticulously clean every corner and dust every inch of the house and have everything in place in her cabinets, dresser drawers and closets. You never had to worry about what our house looked like if you stopped by for a surprise visit. It was always immaculate … except for my room. My mother finally resolved that issue by simply closing the door of my room whenever she felt it was necessary. Every house she lived in was always that way until she became very ill at the end. Her homes were always sparkling clean and company ready.

She tried and tried and tried to instill the same desire for meticulousness in me, it just never worked. She thought being disciplined would motivate me but it did just the opposite. It made me not want to be a perfectionist. I will never forget my first high school report card. Going to high school was a very scary thing for me. I excelled in grammar school but was uncertain if I could cut it in high school. I remembering giving my mother my first high school report card and being very proud of what I accomplished. I had one B and all the rest were A’s. My mother looked at my report card for a minute, turned to me and said very seriously, “so what’s with the B?” I was crushed but she did not know it. She thought by saying what she said she would motivate me to try harder. I took it to mean that I was a failure. And that was the beginning of me being harder on myself than anyone else ever could for many many years. I know now that was never her intention. In later years she told me how proud she was of what I achieved academically. When I told her the story of the report card she didn’t even remember saying it although she did admit that it sounded like something she might say. One of the many push-pulls of a mother-daughter relationship.

Two pictures of my mom

She was also a stickler for my school attendance record and single handedly saw to it that I had perfect attendance for all four years of high school. My mother worked nights at Harris Bank in downtown Chicago when I was in high school. My dad had the responsibility for getting us up in the morning, making our breakfast and getting us out of the house. Mom usually came home after breakfast and just about when we were ready to go out the door. One morning I woke up and had bad cramps, I was getting my period. I really felt lousy and my dad said I could stay home. My mom got home, saw I was still in bed, got me up and made me get dressed in the car while she drove me to school. After all, we couldn’t spoil my perfect attendance record. I have to say once I got to school and started moving around I felt better, but to this day still find it hard to understand why she thought perfect attendance was so important.

My mom was famous for speaking first and thinking second, especially when it came to me. I think she felt so comfortable with me that she never felt she had to mince words – and she never did. Once we were on the phone and she was talking about an article she read in a magazine about John F. Kennedy Jr. Without thinking she blurted out, “and guess what, Jan. He’s a slob, just like you!” By that time I was more mature and not so easily crushed by some of the things she would say and when I called her on it she immediately backpedaled and said, “the article talks about how it is common for slobs to have a lot of money and I know you have a lot of money so I was making a financial comparison between the two of you.” To this day that logic still escapes me, but somehow I feel comforted knowing that John F. Kennedy Jr. was a slob.

I share all of this because I want to create a realistic picture of my mother. Like any other mother and daughter relationship we certainly had our ups and downs. Things weren’t perfect, often messy but there was always love. Although I wish my mom had done things differently in certain instances, I have yet to meet the parent who found the book that tells you how to raise the perfect child and be the perfect parent. As a matter of fact I am glad a book like that didn’t exist as my mother, in her never ending quest for perfection, may have memorized every chapter of it. And although my mom and I were both headstrong and opinionated, it was she who taught me to believe in myself, she who made me believe I could be whatever it was that I wanted to be, she who made me believe that I could compete with and be better than any man, she who gave me the independence to strive and achieve far more than I ever dreamed. In an era where women were still expected to play a more subservient role, she was the first woman in her peer group to go back to work and the first female head of the bank’s charge card division. I learned from her that women could play whatever role they chose to play in life and not necessarily the role that society had perennially designated for them. I grew up not fearing competition and not ever settling for being subservient to anyone – one of the greatest gifts I think my mother ever gave me. The role model that she was and the unending love that she gave were and still are today the things I cherish the most about her.  They are also the things that I continue to miss the most.

It’s That Time Of Year…

Three weeks from today is Thanksgiving better know as Turkey Day when I was growing up. For quite some time the stores have been looking past this event and stocking their shelves with Christmas items. Now that Halloween is over retail is officially in holiday mode. All of the stores are pulling out the stops with bright colors, ornaments, food gifts and of course the elfs, snowmen and all the other traditional holiday characters. I think we have come to merely validate Thanksgiving and have it serve as a placeholder for what is to come next – Black Friday.

But these next few weeks are an important and very bittersweet time of year for me. The holidays have always been the time of year I look forward to with great anticipation. And in some respects I still do. But now it is a time of year that will always have a mark of sadness attached to it as well. It was this time of year, five years ago, that my mother was living out her last days. And although I was happy she was going to be relieved of her pain and suffering, I never anticipated the emptiness I would feel and continue to feel since she died on November 14 2006. So as I was thinking about the five year anniversary of her death I decided it was time to focus on the gift that was her life. To that end, I am going to devote my next couple of blogs to remembering one of the most influential women in my life, my mother. And instead of wallowing in sorrow that she is no longer here, take time to share the memories that I have of her and rejoice in the life of Euphrasia Dolores Miksis Drabik.

My mom at 18 years of age

So, let’s start with that name. Yes her name was Euphrasia. My mother always told me that my grandmother found that name on the last page of the bible. But no matter how many bibles I have looked at over the years I have never been able to find that name on the last page or anywhere else for that matter. Although I do remember an old Elvis Presley movie where he claimed to have an aunt Euphrasia but that’s about the only context I could ever associate with her name. My mother was a very beautiful woman. I know you think I am prejudiced but just look at her picture for yourself and then tell me if you disagree. She was the baby in her family – she had an older brother and two older sisters both who became nuns. I once asked my mother why she didn’t become a nun and she said she just liked boys far too much and the thought never entered her mind to live the life of a nun. She was just too worldly. She always imagined herself famous – she even created a stage name for herself. At that time Hollywood stars rarely kept their real names and she didn’t think Euphrasia had marquee appeal. So, she was going to be Dolores Woods star of stage and screen. (Now do you see how I was destined to be involved in theater arts).

She never went to college. She graduated from high school and immediately started working as a secretary in a law office. Her looks did not go unnoticed by her employer. He continually made sexual advances to her. My mother had lived a very sheltered life and she was not sure how to deal with the situation at the time. She told me that these uncomfortable advances went on for a while and then finally stopped. When I asked her why they stopped so suddenly she turned to me and said, “Honey, never underestimate the power of a good strong fart!” Yep, that was my mom.

So in the coming days I will share some of my most precious memories of her. I look like her, I talk like her, I am no doubt her daughter. And she was by no doubt the best mom a girl could ever have.

A Mother’s Day Tribute

I’m sitting on my deck right now enjoying the warm Spring sunshine, watching the birds feverishly build their nest, smelling the lilac perfume in the air and desperately missing my mother. This time of year, Spring, sunshine, trees budding – the time of growth and renewal, and their is a part of me that is somewhat empty.

My mother, Euphrasia (yes that was her real name) Drabik died in November of 2006 of lung cancer. The doctor’s said she must have had it for quite some time but once she was finally diagnosed she was given three to six months to live and she lived for five. When she was younger she was fiercely independent, one of the first mother’s to go to work with young children still at home. She rose up in the ranks of the male dominated banking business and became the manager of one of their largest departments, the charge card division. I remember my mother saying that one day a plastic card was going to replace money – they were already in the process of developing what we now know as a debit card. She was beautiful, very religious and very self confident.

She and my dad were married for 57 years – and no, they were not the perfect couple. They certainly had their ups and downs. But they managed to live through the bad times and their relationship got stronger and stronger as the years went on. My father was seven years older than my mom and when he turned 65 he wanted to retire and move to Florida. My mom was still going strong working at the bank, but my dad was firm in his resolve and my mother retired at 58 and moved with my dad to Clearwater. There they had the home of their dreams and over 20 years of an active and healthy retired life. My dad suffered an injury in 1996 that made him quadriplegic. She took care of him for 18 months in that condition until he died in February of 1998.

After my dad died, I saw a lot of changes in my mother. Once the confident go-getter, she was now fearful and insecure. She lost some of that self-starter quality that I so admired in her. I guess when you lose someone who has been a part of your life for so many years a part of you dies with them.

A few years after my father’s death, I finally talked her into moving to Colorado where she spent the last three years of her life. I was so grateful for that time. For most of my adult life she lived in Florida and I lived in Chicago and we usually saw each other once a year around the holidays. We talked on the phone once a week and for many years she was a voice on the other end of the phone.

We crammed a lot into the three years that she was here – we went on trips, went out to breakfast, went to movies, saw theatrical productions – we did a lot together. And then one day as I was driving to work I called her and she was in tears. She was experiencing terrible pain in her back

and her side. An ambulance trip to the hospital, the diagnosis, home health care, nursing home care and then she was gone.

She never got a chance to sit out on our deck – it was under construction when she became ill. She never got a chance to see the new landscaping – to smell the fragrance of my lilacs, to enjoy the rose bushes. Those all came during and after her illness. But she would have loved them. She would be out here with my right now, enjoying the sunshine and fresh Spring air.

She was a woman from a very humble background who was determined that her daughter would be educated, confident and fearless. When I was a child I so remember her always saying to me that I would get a college education. No woman in her family at that point had, and she knew that in order to be independent and successful that education was the key. We laughed, cried, fought and loved together. She was my rock, my inspiration and my safety net. The apple did not fall far from the tree – I had so many of her qualities that it was scary.

Now there is a part of me that is gone. Time has healed the deep emotional pain I felt when she died and immediately after but time will never completely heal the hole in my heart. But now, when I get sad, I think of her sitting next to me and saying, “Now, Janice Marie – this is not the woman that I raised you to be – strong and confident. So, buck up and keep moving forward. You can do it. I know you can. I raised you to be nothing less.” And all I can say is, yes Mom you did!

So as we approach another Mother’s Day, I want to pay tribute in writing to my mother, Euphrasia Drabik. She was beautiful, strong, courageous and smart. And every day, I hope that I will become half of the woman that she was. I love you, Mom. Happy Mother’s Day!

Your baby,

Janice Marie

It’s finally over… peace

Euphrasia Dolores Miksis Drabik – born September 23, 1922 – died November 14, 2006. How do you even begin to put into the words this very special life. She was one of four children (the baby) of Apolian and Marcella Miksis (Victor, Genevieve and Bernice), born in Chicago and lived under very modest means on the south side of Chicago (a large Lithuanian stronghold at the time). She married Edward Joseph Drabik (1915-1998) and had two children, Robert (1947) and Janice (1951). She lived in Chicago until she retired with her husband to Clearwater Florida in 1982 and moved to Colorado to be near her daughter in 2004.

Mom, I miss you terribly already, but I am at such peace because you are not suffering any longer. I had two + great years with my mom here in Colorado. We went shoppping, went to movies, saw plays had regular ladies nite out dinners – and I was blessed to have had the opportunity to really spend some time with her after living far away from her for so many years once she and dad moved to Florida. She always felt I was going to follow them down there, but little Jan who always had a boat load of independence decided that Florida was not for her and lived in Chicago, Dayton, Ohio and now Boulder, Colorado.

I had never experienced a death before and so I was really not sure what to expect and how I would feel about it. Yesterday started with a call from Hospice. They asked if I wanted a nurse to stay with mom all day, because they had one available. I jumped at the chance, because I had planned to be there all day as well, and knew I would appreciate not only the company but the professional assessment of mom’s condition.

We sat all morning and chatted about mom. There were some changes in her condition since the nurse spent the day with her on Sunday, but nothing to indicate eminent death. The nurse was quick to remind me that those conditions could change at any time, and could change rapidly.

At about 11:30 am, the nurse suggested that I go out for a while and grab some lunch. I decided to do so – nursing homes are tough environments to be in when you are sitting at the bedside of a dying person.

I was just finishing when I got a call on my cell phone – some things appeared to be changing, they recommended that I come back. I got back relatively quickly, and to my untrained eye I could not notice any type of change. But they told me that her heart rate had incresed significantly and that her breathing was changing.

So, I sat by her bed and held her hand. I told her that she was the one who was there when I entered into this world and I asked her to give me a final Christmas gift – to let me be there when she left this world. I kept encouraging her to go, I told her daddy was waiting, I told her that I would be ok, and I told her that she should give in and be at peace. Over the course of about 20 minutes, as I continued to talk to her and to hold her hand, her breathing became more and more shallow. It finally got to the point where her breaths were so insignificant that it made me wonder how that little amount of oxygen could sustain life. Then there were a couple of more very shallow, very small breaths, and nothing. A tear streamed down out of her left eye, and it was all over.

When I came back from lunch, not only was the nurse there who was assigned for the day, but mom’s regular nurse, the hospice social worker and a nurse being trained to do bedside assessments. She had a room full of people, pulling for her to be out of her pain and wishing her a speedy journey to dad.

I have to say, although I was fearful of what to expect, it was the most beautiful experience of my life. My mom gave me the ultimate gift, and I will always be grateful to her for sharing her last moments of life with me.

Since last Wednesday you could see that she was accepting what was happening and preparing for the next phase of her life. On Friday she asked me what was happening to her. When I asked what she thought was happening to her, she said, "I’m dying", and I told her yes. With tears in her eyes, she told me that she would not be able to go Christmas shopping with me, and with tears in my eyes, I told her that she would always be able to go Christmas shopping with me, because for as long as I live, I will always have her in my heart wherever I go and whatever I do. She smiled.

On Monday I had both my aunt and my brother talk to her. I held the phone by her ear and they told her it was ok to let go. When she heard my brother’s voice, she opened her eyes and I got cognitive recognition. I said hi to her, and she very weakly and softly said to me, "I love you." Those were the last words I would ever hear her say.

Today we will finalize the arrangements and my last job is to get her back to dad. I can’t believe that it is over, and yet I am so happy that she is finally out of her pain. This journey was a tough one, but she handled it with grace and a positive attitude. I truly believe that until this last week, she thought she would beat this thing and walk out of that nursing home. She was a fighter until the end.

Euphrasia Dolores Miksis Drabik – born 1922, died 2006. I love you with all my heart, mom. And until the day that I die, you will live on in my heart. I am counting on you to be my guardian angel now. It’s a dirty job, but I know you are up to the task. Thank you for everything, mom. I will always love you.

Your baby,

Janice Marie

 

Update

I realize that it has been a long time since I added a blog. Now that I am back to work, I have so much more on my plate that sometimes I just do not have the energy to blog.
As the hospice nurse might say, the disease is progressing. We had a care meeting for my mom in her room last week. I was not convinced that involving her in the meeting was a good thing as I felt it would scare her. I have to admit that in retrospect, I was wrong. I think my mom really needed the opportunity to talk, to share her thoughts and to ask questions.
Right now she goes from being lucid to having trouble sometimes remembering even simple words. But, for the most part she is still very lucid. She was able to ask for a couple of things – mostly she wanted to be able to go outside at least a couple of times a week and she wanted to make sure that she was not being moved out of her room.
It was very hard for me to watch her during the meeting. Her regression is very evident and sometimes painful to watch. She sat in a chair with a stuffed animal in her arm acting more like a little girl than a grown woman.
She started to talk about being tired and losing her will to fight. She asked us all to promise that before we close the lid on her coffin to make sure she was really dead as she is claustrophobic. She asked the hospice nurse what dying would feel like – I really had a hard time with that one. But it was obvious that she wanted to talk about dying and it gave her an opportunity to do that with all of us in her room.
She asked for a special lunch on Saturday – an open face hot turkey sandwich with mashed potatoes, gravy and extra cranberry sauce. We set up the lunch in a small dining room and after that I took her outside and we sat for quite some time and chatted.
I’ve also noticed how quickly anything tires out my mother, now. I remember when I would be with her, she sometimes seemed to talk incessently. She would recount even the smallest details of her day. Now it seems like talking is a drain for her, and she shows little interest in carrying on any long conversations.
She is sleeping a lot now – and the nurses tell me that is common. I keep asking her if she has any pain, and she says no. But she is starting to say that she sometimes gets tired of fighting, and today she even said to me that she thinks that loss of interest in fighting is normal when someone is dying.
Sometimes I feel I am in daze, moving around in a situation that changes by day and by minute and just waiting for something to happen – but what that something is, I really don’t know. If the roller coaster tires me out, I can only imagine how it makes her feel.
Next week I am supposed to attend a conference in Seattle. I am still planning on going, but I have now way of knowing what will happen and when. It almost feel like something is constantly hanging over my head and can drop at any time and there is no way I can protect myself from it. That must sound selfish – I can’t begin to imagine what is going on in mom’s mind.
So, we move on – day to day – taking things as they come. What I try and focus on is being grateful to still have her- because I have to say, I still can’t imagine and don’t want to imagine what life would be without her.

Some perspective…

Yesterday I finished getting everything out of my mother’s apartment that I wanted. So her place looks neat and clean and ready for the estate manager to being the process of selling what’s left. I wish I could say the same about my house. I have piles of stuff that I took from her apartment both in the basement and in the office. I did not have the time to sort through things at her apartment and have it ready so that I could go back to work today. So I’ve moved stuff and now I have piles.
 
I was not going to stop to see my mom yesterday, but when I called her she seemed pretty confused and she sounded like she was speaking with a thick tongue. So, I stopped by for a few minutes. I can always tell when she is not 100% lucid – the look in her eyes is sort of glazed over and she cannot seem to focus in on anything.
 
Today I spoke to the hospice nurse about it – I wondered if by chance someone had given her too much medication or inadvertantly changed the dosage. She said she would check, but she also said that these bouts of la la land are also part of the cancer process even without changes in the medication.
 
My mom is also having some problems with the development of some bed soars on her butt. Pat, the hospice nurse, said that this is a common occurence with cancer patience – it is the effect that cancer has on the skin making it almost paper thin. My mom definitely has that.
 
Pat said to be thankful for the lucid times, because they will be interspersed with dillusionary times, and that this was common. It was just that my mom had come off of a three week run of being tremendously  lucid. Every once in a while the danger that is lurking behind rears its ugly head.
 
So, at least mom’s apartment is ready for the next phase of the close down process, and I have a boat load of stuff to sort through. My mom saved old greeting cards and other mementos, but what really surprised me is that she saved all of the old nursing home bills and medicare receipts from when my grandmother was in the nursing home. My grandmother died quite a few years ago – I am not sure why she saved all of those bills. Needless to say, the shredder got a good meal yesterday an probably more to come.
 
I went back to work today, and that was a new kind of tired. But, I am glad to be back at work. I will be in sporadically this month as I will still need to take Nick to some follow-up doctor’s appointments and I will still have some things to handle closing down my mother’s apartment. I see the end of August as a milestone. Once I have closed down that apartment, that will be a big relief.

What a week!

It has really been quite a week – non-stop. I got a lot done, but there is so much more to do, and it just seems like it never ends. And on top of everything, my car started making strange noises yesterday – I think it is related to the brakes. I will have to get it in, but it is not like I can just use Nick’s car while it is getting repaired. Sometimes I wonder if it will ever let up.
 
I was amazed at how hard it was to get rid of my mother’s furniture. Most places have strict requirements as to what they will take. For example, I called Habitat for Humanity. They will not take any furniture that is older than 5 years old. One other place said they would not take any white furniture (my mom does not have any) or any glass furniture (my mom has quite a bit of glass in her end tables and coffee tables). A lot of places do not pick up.
 
I contacted someone who is a relative of the person who owns my mother’s building. They operated a flea market in Longmont. He came by, looked at what was there and said he would call me back the next day. He left a message late in the day the next day saying he would take a pass. I guess I should have not just felt that he would take it and continue to pursue other avenues, but I waited and lost all of that time. I really felt that he probably knew at the time that he would not take the stuff. Why he waited a day and a half before calling me, I’m not sure, but I was a little disappointed in him.
 
I got a lead on a place that provides furniture for people just starting over after a family crisis such as divorce or spousal abuse. They made an appointment to pick up, but they said they had the right to refuse any piece once they got there. That was not very affirming to me, as then I would be scrambling to figure out how I could get the rest of the stuff out of there.
 
Finally I found, in the Yellow Pages of all places, an estate management person who also operates a consignment store in Longmont. She came out and offered to do an estate sale by appointment throughout the month (we worked out the details with the building’s owner), and then if things were not sold by the last Saturday of the month, have a day long sale. Any furniture that was not sold, she would take and put in her store. All of the other small things, I would be responsible for.
 
I already made arrangements with the Salvation Army to pick up the small stuff the Monday after the sale. So, it seems like we have a plan. Doing this took an entire week to organize. It doesn’t sound complicated now, but by the time you call people and find out what they can and cannot do, deal with call backs because most places that you call do not connect you with a live person, and organize the logistics – well it was just crazy.
 
Don’t forget that sandwiched in that was Nick’s surgery on Tuesday, so for all intents and purposes, I had four days to do this stuff. Today and tomorrow I need to get all of the stuff out of there that I want. And today, one of my mother’s friends is taking out the stuff that she wants.
 
This has been very surreal – closing this down with my mother still alive. The reality of it all has not hit me yet. I know it will at the end of the month when I walk out of that apartment for the last time.

Moving and surgery…

Things appear to be moving at a clip right now. Today we had a doctor’s appointment to do some blood work on Nick to determine if he could have surgery on his ankle tomorrow. Then it was phone calls to the insurance company to determine all of the paperwork needed to document my mother’s care so that we can begin to access her long term care benefits. Then it was off to mom’s apartment to start the process of getting things prepared so that the apartment can be vacated by the end of August.
 
At the apartment, I put aside everything that I would take, checked with my brother who only wants two things, a wall hanging and a picture of my mother, I checked with my aunt and I know what she wants, then I called my mom’s best friend and she showed me what she wanted.
 
I got some information from the woman who manages my mother’s building. She said there was a flee market in town that would come and look at the furniture, clothing, etc. and make an offer. If I accepted it, they would come and pick it up. I have an appointment with them on Wednesday morning. Then the hospice thrift shop might be interested in some things, and after that I will call the Longmont Senior Center and see if they have some ideas or resources that can help.
 
After that, both Nick and I went to visit mom for a few minutes. Then it was off to rent some crutches for him for after his surgery tomorrow. And then, finally home.
 
I took pictures of my mom’s apartment, but I left the camera there. I will go back on Wednesday (maybe tomorrow depending on Nick and his surgery) and then I will post them on this website. My mom really loved that apartment and she really enjoyed living there. It was hard to take those pictures, and I know it will be very hard when I walk out of that apartment for the last time. Right now, I really don’t have a lot of time to dwell on that, but every once in a while the thought creeps into my brain, and it is gut wrenching.
 
This morning, my mom was a little dilusionary. When I called her this morning she said "Guess what, Jan. Sister Teresita (my aunt from Chicago) came to visit me. We had such a nice talk, and then she got tired so now she is sleeping in my bed." I told her Sister Teresita was not there but she insisted that she was. Then finally she asked me if I wanted her to wake Sister Teresita up to prove it to me. I said yes and she called Sister Teresita’s name two times. Then she said, " Oh, oh, I guess she really isn’t here, is she?" I said know and assured her that I would let her know when she was having halucinations.
 
She is on some additional medication because she developed a kidney infection. The hospice nurse told me that that most likely was the cause of her confusion, and that medication related confusions generally occur early in the morning and late at night. When I visited mom this afternoon, we had a good laugh about her halucination and she was just fine.
 
But, it’s hard not to be aware that there is this cloud hanging over us and someday it is going to burst. While we we there, she talked about the fact that everyday between 3-4pm, the pain around her waist seems to start building up and she has to call the nurse for a Vicadin. She called the nurse while we were there, got the pill and before I left she said the pain was completely gone. But it just serves as a reminder that it is there, lurking underneath the mask of medication, and that it will eventually get stronger and require stronger medication. Sometimes you wonder how long you have. I really try to suppress those thoughts and enjoy what I have for however long I will have it.
 
So tomorrow, surgery and more moving. I am hoping the get a lot handled this week so that I will only have to take isolated days off to complete the move and get back to work. In some ways, there appears to be a light at the end of the tunnel, and in other ways, it seems like I am just entering the tunnel.
 
It is so much better than when this all started, though. And no one is more grateful for that then I. What is happening now, I can handle. Before, it almost seemed too much. One day at a time – my new favorite motto.

Not for the weak of heart…

Yesterday I met a friend and we went over to my mom’s apartment to plan the process for closing the apartment down. There has been so much going on lately that I asked her to help me think through a plan since all my brain could do was be overwhelmed at the thought of orchestrating a move.
 
Kathy was great. She took one look around and said, "Don’t worry, Jan, this is really doable." Then we started to talk about some logical steps to get this all done by the end of August. Kathy has a similar position to mine with the City of Lakewood, CO. She is the Director of Community Resources there, and she not only manages all of the Parks and Recreation functions, but maintains all of the city’s buildings and cultural programs as well.
 
So, first step, take the things that I want. Kathy felt very stronly that anything that I wanted I should get – and then from there ask my brother and aunt. After that, my mom’s best friend in the building, Alice and then I will also talk to the building owner. I have a call into my mom’s social worker from Hospice to see if she can align me with resources that will pack and move. If not, then Kathy will get a crew together to help pack things up and whatever charitable organizations I decide upon can gave the stuff to use for the good of others. I really do not want to sell anything – although some of my mom’s stuff is old, it is in very good shape and I would like her legacy to be that of helping others less fortunate.
 
So, I have a plan. Next week I will start. Nick has a doctor’s appointment on Monday and then he may have surgery on Tuesday depending on whether his potassium levels can be better regulated. i will take a few days and get what I need to get done in that apartment and get all of the the players and organizations lined up so that we have a system mapped out to get us out of there by August 31.
 
The hardest thing about the visit to my mom’s apartment yesterday was choosing the "outfit". By that I mean I had to choose the clothes that she would be wearing in the casket. I know, I know, how morbid can you get. But before her clothes are packed up and given away, I need to choose anything else that I think she may need at the nursing home (which is not all that much) and then I had to take into consideration"the outfit".
 
For some reason, I was pretty rationale about the whole thing – maybe because it just seems so bizarre and so distant. I choose a couple of her favorite things – a beautiful blue/black and white brocaded jacket that I bought her for Christmas, a white brocade blouse that she bought at Coldwater Creek that she just loves, black pants and black shoes. My mother never really liked to wear dresses because of her vericose veins, and so that was not an option. I brought the outfit home and put it in the back of my closet – for another day, another time.
 
Health-wise, my mother has been holding her own from a lucid perspective, but she shared with me yesterday that she cannot feel the big toe on her left foot at all, and as I mentioned a few blogs ago, her legs are no longer supporting her weight. That could very well be the result of the tumor pressing up against her spine.
 
What truly is impressing me these days about my mom is her attitude. We had a long conversation yesterday about her apartment. I felt I had to give her one last chance to say that she wanted to keep the apartment in case she becomes the "hospice miracle". She could not see paying $1,400 a month to have an apartment sit empty, especially with her nursing home bills.
 
I assured her that if she truly became a miracle, that we would waste no time finding her another place to live and have one heck of a fun time picking out all new furniture for her. She liked that.
 
She is really keeping an amazing attitude about all of this. She doesn’t dwell on the prognosis, and she is very pleased with the care she is getting at the nursing facility. From that standpoint, she has really made this much easier for me as I am not walking around with any guilt about where she is and thinking that she would be happier some place else. Thank you sooooo much, mom!
 
I think the hard part is yet to come – when I close the doors on that apartment for the last time. I think I am going to take some pictures of it. I’ll post them on this site, so that you can she the great place that she spent the last 2 1/2 years and I can have as a keepsake.
 
More later….

If it’s not one thing…

 
In a conversation with a friend of mine today, I was reminded that I need to try to keep my life as uncomplicated as possible because it ain’t over yet. I know it’s true. Right now it seems to toggle between issues with my mom or issues with Nick.
 
First, let me advise all of you – get long term care insurance. I got the bill for two months of my mother’s care – to the tune of $11,000. I need to check with the nursing facility to see if they put in a claim to my mom’s long term care insurance. The thing with her policy is that is has what is called a 90 day elimination period. What that basically means is the first 90 days is on her and then after that she has 3 years of paid benefits amounting to $145/day for her care.
 
It may be that all of her care has not amounted to the 90 day elimination period – but I want to make sure every avenue has been pursued before I pay that bill.
 
So today, I put in a full day of work and everything went along rather smoothly. After dinner this evening, my cell phone rings and it is the nursing facility calling. Apparently my mom’s legs gave out when she was being transferred from the commode back to the bed. This happened a few weeks ago as well- one of her legs gave out. This time both of her legs gave out and the aide had to lower her to the floor and get help to get her back to the bed. In speaking to the nurse, we agreed that from now on two people should be involved in transferring my mom out of bed to either the commode or to the chair in her room.
 
So, I called my mom and when I said, "So I heard your legs gave out – she began to cry" – she told me that she thought she was having a heart attack and when I asked her what a heart attack had to to with her legs giving out – she said she did not know. But she was really upset that this time it was both of her legs instead of just one of them. She said when her legs gave out it surprised the aide and that she lowered her to the floor but the aide hurt her under her arms while doing it. She said she began to cry right away and that upset the aide, but that she told the aide it was not her fault. She alluded to me that she feels that she is experiencing changes, but when I remained quiet to see if she would elaborate on what changes she meant – she just dropped the subject.
 
So, although an uneventful day at work and an uneventful day with Nick, we ended the day with a "blip" involving my mother.
 
Sometimes I feel like I am in a bad dream and that I can’t wake up. Dealing with insurance companies, monitoring all the bills (and there are many and the benefits can be confusing), monitoring my mother’s care, taking Nick to his doctor’s appointments (a nurse’s visit tomorrow and an appointment with his PCP on Monday followed by rescheduling his surgery), dealing with the insurance company for Nick’s car (which the adjuster totalled today) – which will mean at some point the thought of pursuing another car – closing down my mother’s apartment, working my full time job – yada, yada, yada – that’s the dream that feels that I can’t wake up from.
 
And yet there is a part of me that knows that are others that have it much worse than me – I am at least getting some breaks in the action. The key for me is focus – focus on just one day at a time – and truly sticking to that. It all doesn not have to be handled in a day, and it all does not have to be handled by me.
 
So, mom needed me today – Nick need’s me tomorrow and who knows what will happen next. Thanks for listening.

A breather…

I took my aunt to the airport and then went into work. It is very hard to pop in and out of work and be engaged, much less be helpful or supportive of staff or provide them with some sort of leadership. I will be at work for another day, then off for a day and a half and then…. who knows?
 
They are all so supportive – I am amazed at how supportive they have been with the burden I have placed on them. But they are great people and I am blessed to work with such a great group of people.
 
As this whole series of events have been unfolding (and as I have mentioned before) people tell me that there will be positive things that come out of this. So far, the kindess of the people in Wyoming, the support of some very close friends, and the great support I have gotten from my staff have shone through all of the clouds. I realize that even in hardship, that I am blessed – I work with a great group of people – there are still people who will be empathetic and compassionate even though they are strangers – and I still have my mom, and I still have Nick.
 
So, today has been a take a breather day – and that is what I have done. A colleague of mine who has gone through some very difficult times in recent years reminded me not to let the highs get too high and the lows too low. I think that is pretty good advice. It is not that you are selling yourself short – but in times of uncertainty it is good to remember that happiness and smiles do exist and will come – as well as sadness and grief. Try to ride the waves and remember that when you’re in the thick of it, whether good or bad, that things will change.
 
More tomorrow…
 
 

The Calm Before the Storm?

Isn’t it strange that as human beings we sometimes can’t feel good about things when they are going well. I guess I have been through so much within the past 6 weeks that now that things are holding their own, I am waiting for the bomb to drop.
 
I really have to let this go. It is so important to appreciate the moment and what you have, because that is really all that you truly have – yesterday is gone and tomorrow we can only speculate about. Making the most of the moment, of the time you have with people you care about and trying to keep the noise in your brain from taking you somewhere else is so important. If only I could get better than that.
 
I think we really hit the jackpot with my mom’s meds. She is still as clear as a bell and has been that way since last Friday (the longest run so far). We have discontinued some meds, but we are keeping an eye on that. For example, we have discontinued my mothers lasix (I diuretic that assists the body in releasing fluids).  Since then, we’ve  noticed that her left foot is slightly swollen. That is not a big deal, but we need to monitor it and if it gets worse, we may need to consider reinstating the drug.
 
I had a great conversation with mom this morning. And she is so enjoying my aunt being here. It has been such a gift for her and I am so glad that she is enough in the here and now to enjoy it. So, that is what I should focus on and count each day as a blessing. It is hard when you feel like you have this ominous thing hanging over your head. But I will continue to try.

And the beat goes on…

 

  I’ms not sure I told everyone this part of the story, but during all of this adventure with my mom (the past 6 weeks), Nick was sick, in the hospital and then in rehab. I am not going to go into the details of his illenss, that is his story to tell, but needless to say during all of this time I was dealing with health crisis with the two closest people in my life.

 
The good news is, Nick came home today. He is still a little weak, but he is on the mend and that is very encouraging.
 
I took the day off today to pick up Nick and get him settled at home. Since I did that, I decided to take a quick trip and visit mom. She is still very lucid – I think our decision to change some meds really did the trick. She is also really enjoying visiting with my aunt – it has given her a resurgence that I am very happy about.
 
For the past two days my mother was saying that she had a taste for cheese curls and cracker jack, and so I brought some to her today. It was as if I had given her a million dollars. (Oh, the simple pleasures of life).
 
I have a killer week this week – two night meetings and so my time will be spent concentrating on work. Slowly but ever so slowly, things are moving in a direction – I’m not exactly sure what direction, but it at least appears to be moving into something that resembles a little more normalcy and a little less crisis.
 
I really have to say that I appreciate the small things much much more now – reading the paper, walking the dog, going to work , etc. It is so nice, at least for the momtent, not to have some intense crisis in my life – and things that I used to think were crises just don’t seem to measure up to that standard anymore. I think that has been one of the blessings of the past 6 weeks. I am really thankful for the little things.
 
 

Thank you for the calm

I am so grateful for a calm weekend. To do things that we take for granted and consider normal have been such a joy for me. Yesterday I went out to breakfast – WOW. I also went grocery shopping – DOUBLE WOW – what fun! The truth is, it was relaxing and calming to do just mundane things and not to worry about life or death or making health care decisions or worrying if someone is going to recognize me.
 
I visited my mother yesterday afternoon. My aunt, Sister Teresita, was there along with her travelling companion, Sister Grace Carol. My mom was very lucid – like she was entertaining guests in her home. I could tell she was feeling more like herself because she was not liking the fact that her meal tray was still in her room (my mother is anal about neatness – the second you are finished eating, according to her, you are supposed to get up, clear up the dishes, wash them, dry them and put them away. Oh, and dishwashers are a no, no – use the sink because the old fashioned way is better). Then I got a compliment from one of the sisters and my mom’s reply was – of course she’s good – she’s my daughter (another innate part of my mom’s true personality – I am not good on my own, I am good because I came from her). And then the orders started – Jan you need to do this, and Jan you need to do that….   Normally, these aspects of my mother’s personality are the one’s that always drive me insane and the ones that generate the most tension between us. But, I have to admit, with being faced with not being able to experience what is truly my mother again, I was able to let things just roll off of my back and simply be grateful for the fact that she was with us in her true personality and in her own unique way.
 
She also got a new medication patch put on yesterday so we will see if there is some sort of correlation between her delusionary episodes and putting on a new patch. According to the hospice nurse, this roller coaster of ‘"is mom going to be playing with a full deck today" could be a result of the changing of the patch and the initial infusion of the strong medication, or it could be the cancer spreading to the brain. We’ll see what happens with the patch change.
 
It was so nice to spend so much time with her and with her being as clear as a bell. Everything was going along very pleasantly and then she started to feel some new pains in her back and so we had to call for some pain medication. It was almost a cruel joke – she seemed so normal, almost like she was ready to go back home, and then the cancer reared its ugly head in the form of pain and reminded us that it is truly lurking in the background. I am so glad we have the ability to manage pain now and keep people as comfortable as possible while the cancer does its dirty work. That is definitely a comfort.

I’m so glad my friends are reading this…

It has been interesting and rewarding to do this journaling and also very therapeutic. As I reread some of the entries, it is amazing how cathartic it is for me. But one thing that I didn’t really think about when I began this process was the comments, opinions and words of support that I would get from my friends who are reading my ramblings. That has just been a totally unexpected blessing – almost like being covered by a warm blanket or snuggling with a puppy. What a joy and a comfort.
 
It was amazing how much support I got for the decision I made regarding not doing the cat scan and the potential brain radiation. People shared stories of similar situations they had been in – one colleague at work told me that during her treatement for breast cancer, and while she was doing radiation therapy, there was another woman she met who was getting radiation on the brain. She told me that that woman suffered many complications and that the side effects where intensified because the brain was the targeted area. So, for as much angst that I had when I made the decision, now I am completely comfortable with it – thanks to all of you.
 
This journaling process has been another very important way for me not to feel so all alone during this time. It is an unbelievable responsibility to manage someone’s health care. (Makes me appreciate even more what it must be like to be a parent)  You are constantly second guessing yourself (or at least I am) about are you making the right decision for the person, or are you making the decision to suit yourself?
 
I am beginning to believe that all decisions made with care and love are the right decisions. We are not God and we certainly do not know what the future will be – so all we can do is simply the best that we can. And that is what I try to do.
 
Now, on to my mom. Well, yesterday was one of those great days. I did not call her in the morning since she was pretty out of it the day before and I knew my aunt would be there. So after work I called her, and she sounded great – 100% normal. So, this delusion phase thing seems to go in and out. I’m not sure if it is tied to my mothers medication patch which is changed every three days (we are going to monitor this to see if the pattern coincides) or if it is the cancer spreading to the brain, which the hospice nurse tells me in all liklihood it will.
 
I remember when my mom first starting experiencing the pains in her back. She would have them for a while and then they would disappear. For a while she would have them in the morning and then at 1pm they would magically go away and be gone for the rest of the day. She would never have them when she was sleeping and then all of a sudden the pain would start waking her up. The pain continuted to intensify and laster longer until it became unbearable.
 
I wonder if this could be a similar pattern beginning to occur. I’m not sure if these phases are due to the changing of the medication patch or perhaps to the spreading of the cancer – I think time will give us a better indication of that.
 
All I do know for know is that it is so wonderful to have my aunt here – she is being so helpful and I know she is relishing the time she is having with my mom.
 
One more thought… because my mom was so lucid yesterday, I shared with her my decision about the cat scan. She totally agreed with me and said that she did not want to do any radiation on the brain. She also said – oh I forgot – when the doctor visited her on Monday, the doctor told her to tell me to call her. I’m not quite sure why the doctor would put that responsibility on my mom, particularly in her condition and with the phases she goes through – I did not think that was very smart. But no matter, the procedure is not being done and yesterday was a great day for my mom. Just one day at a time……

Quality of Life or Needless Treatment?

I picked up my aunt at the airport this morning. It was great to see her and great to know that I will have some support the next couple of weeks dealing with my mom.
 
I warned her to be prepared – that mom was looking pretty frail. She handled seeing mom very well. While I was at the nursing home, mom’s hospice nurse pulled me aside and asked me if I was aware that mom’s primary care physician ordered a cat scan of the head for my mom. I said no and asked what the purpose of that would be. The nurse said she could only think that the purpose would be to see if the cancer had spread to her brain. The nurse asked me how I felt about that, and I told her that I did not think that my mom should be put through any more medical procedures  unless it was going to produce some significant change in her. The nurse agreed and said she would call my mom’s primary care physician.
 
A few minutes later the nurse came into my mom’s room and said the doctor wanted to speak to me. The doctor told me that she thought that if the scan showed the cancer had spread to the brain, that some radiation treatments might give her more lucidity for her remaining time. She was careful to say that the treatment would not give my mom any more time, just perhaps some better quality of life.
 
I told her that I did not think it was a good idea – that the prior radiation treatments had been hard on my mom and that as she is getting frailer, I just did not think the trauma of this was a good idea. I told her that my mom had gotten sick after every prior radition treatment and threw up. She insisted that vomiting could be caused by the brain tumors and not the radiation, but I told her it was strange to me how mom only vomited after the radiation treatments and never at any other time. She kept insisting that my mom was aware that there were times when she was delusionary and that was different than a patient that had dimentia and was not aware.  Thtat the current situation was affecting her quality of life.  I told her I needed to think about it and get back to her.
 
Thank God my aunt was here. I asked the hospice nurse to meet with me and my aunt and I explained the situation to my aunt. She immediately shook her head no and said that she did not think that we should put mom through that. I was so glad. I started to cry and asked if they thought that by not doing this I was killing my mom. Both said no, and that at her age and in her present condition that this treatment would be too difficult for her. And in the end, it was not going to give her any more time.
 
I was so grateful to have my aunt there to assist in my mom’s health care decisions. I have been making them all on my own up to this point, and it seems that at a certain point you really question if you are doing the right thing or not.
 
I also think the medical profession could do with a little less treatment and a little more sensitivity. I have asked the facility to inform me if the doctor orders any more treatments of this nature so that I can be part of the conversation to determine if it is in my mom’s best interest to pursue.
 
I know in my heart I am not killing my mom – I just pray that I am doing the right thing.

The Money

I never know what to expect from day to day. This morning I called my mom and said,  "Hi mom, how are you" and her reply was "How do you think I should be?" – so I thought, here we go.
 
So mom, what’s wrong. She proceeded to ask me why my aunt wouldn’t say anything to her – that she was doing all the talking and that my aunt was just sitting there and tsking at her. I told the reason why my aunt wasn’t talking is because she was not there yet and would not be there until tomorrow. She said that I told her that she would be here today. When I told her that when I talked to her yesterday I said she would be here the day after tomorrow, she insisted I told her tomorrow (meaning today, Wednesday).
 
I told her my aunt was not in her room, and that she would not be here until tomorrow. Then she asked me about her money. She said that I told her that I had a conversation with Bob (my brother) and that we "cut a deal" and divided up her money. When she asked me how her health care bills would be paid as a result of this deal, I supposedly told her that that was not my concern and it was her problem.
 
Then she told me that I told her that I lost her wedding ring.
 
I proceeded to tell her that none of that was true. I asked her if they changed her medication patch today – she said yes- and it seems like the first day when they change that patch that she is more delusionary than on the second and third day (the patch gets changed every three days). I told her that I understood her fears and that because of her situation that she had to put her complete trust in me, but that I guaranteed that her money is her money and that it will be used to take care of her and that I did not cut any deal with Bob. I told her that I had her wedding ring in a safe place (she gave me both her wedding ring and my grandmother’s wedding ring when she went into the hospital.) I told her that I was wearing grandma’s ring but that I would not wear hers, because it was hers, and if she "graduates" from hospice as she maintains she will, that I will be more than happy to put that ring back on her finger.
 
She started to cry and said that she was sorry for putting me through so much and that she must be losing her mind. I told her she was not losing her mind and that she was taking very powerful drugs and unfortunately that was part of her pain management and unfortunately they do play havoc with your mind. I told her it had to be hard to deal with all of this, trying to separate what is truth from what is not, but I hoped she believed in me and had enough faith in me to know that I was not lying to her and that I would indeed take care of her.
 
When I called her this evening, she was still a little loopy but when I asked her if she remembered our conversation this morning, she said that she did and that the conversation was such a comfort to her that she was able to get some sleep during the day – she said her worries prevented her from getting much sleep the night before.
 
So, I was happy to hear I was able to comfort her. But it got me to thinking how terrifying it must be for someone to feel so out of control and out of the loop and truly have to rely totally on someone else for everything in their life. It’s not that she doesn’t trust me, but the thought of being that completely dependent is mind boggling.
 
The good thing is that there is a part of her that can separate herself from the drugs and see the delusionary side for what it is. I’m not sure how long that will last, but I am glad she has the capability to do that.
 
How terrifying this has to be for her. That really makes me very sad.

Caring for older adults

As I was leaving the nursing facility today I stopped and had a chat with the facility director. She told me that the feedback she got from staff regarding our care meeting was very positive, and she was glad that they listened to me and that they came up with some ideas on how to enchance my mother’s care.
 
I mentioned to her what I said to the staff at the beginning of the meeting. I feel that people who do this type of work are truly extraordinary people – I think I called them angels. The work is so hard and sometimes thankless and can also be depressing. I told her of my concern for the future – for us "baby boomers" and how our care will be approached.
 
I remember I felt this way when my dad had his accident (he had an accident that made him quadriplegic and he died 18 months after the accident), and I find myself feeling this way again. I really question whether we keep people alive too long.
 
I am not trying to say that we should kill people off, but at some time we lose our quality of life and we become something that is not us – not even close to us. And yet we have the drugs and the technology to keep people confined to beds for their entire day, or confined to beds and wheel chairs where they sit, stare and just exist.
 
I’m not sure what it right – but the thought of living that way really scares me.
 
And then, there is this whole group of wonderful people who dedicated themselves to caring for people in this stage of their life. Not all of them are all that altruistic, but most that I have seen in this facility do things on a day to day basis that I cannot imagine myself doing  – and yet they do it in a graceful and caring way.
 
When I spoke to the facility director, I mentioned that I though that as a society we do not have a clue of what to do with people as they age and get sick. And the problem may only get worse as my generation continues to age. Where are we going to put people – who will take care of them – what is it going to cost?
 
And the saddest thing of all, what do we pay people who devote themselves to providing this critical kind of care? This profession and the teaching profession, in my estimation, are the two most underpaid professions in our country. And yet we say we value older adults and that our youth are critical to our future success. The logic escapes me…..
 
I truly hope their comes a time when we figure out what top notch care for older adults is, and provide it as a matter of course, and not simply to those that can afford it.
 
My mom is fortunate. When my dad died, she decided to take out nursing home insurance, so much (but not all) of her expenses are being covered. And she has me to watch over her care and to make sure things are going the way that they should. But I understand from the staff there that she is the exception and not the rule. So what do you do for those who cannot afford and do not have family or friends that can  adovcate for them and/or assume the 24/7 caregiver role (and should that ever even be an expectation) – who worries about them – who cares for them.
 
My mom has me – I have no children – I guess maybe someday I may be faced with being in some broken down institution with no one to advocate for me and no one who cares. That also is scary. But if that occurs, hopefully I will be so blissfully unware because I have been kept alive longer than I should have and my brain is mush, and I won’t even be aware.
 
Just some dark thoughts that have crept into my brain…….
 
 
 
 

Back in the world of the living!

I just got back from the nursing facility – the nursing staff, the hospice staff and I had a general meeting about my mom, her medication, communication, etc. It was a great meeting – everyone was open and willing to listen and roles and responsbilities were further clarified.
 
The interesting thing is that my mom is so lucid it is scary – it’s almost like she doesn’t have cancer but is merely recuperating from some type of illness. She is herself, and that is so great to see – of course we do not know how long it will last – but I am focusing more on now and the future will bring what it will bring.
 
This is so weird – going from a place where I was afraid she was in the process of dying (Friday) to today where it looks like all she might need is just a little bit of physical therapy and she could walk out of the joint.
 
One indication that she is ill is that the least amount of activity really tires her out. The nurses aid came into her room to bathe her and change her clothes and after that she needed to get some rest. But, I am so happy the the personality that I know is my mom is here – I hope it can hold on during my aunt’s visit – that would be great for both of them.
 
So, back to work – and let’s hope for the best for as long as we can have it!

Back to Work

Today I went back to work after being off for a month. I never thought that on a Sunday night I would actually be thinking about looking forward to going back to work on Monday – but I did.
 
It was great to do something that had a sense of routine – a sense of "normalcy".  Everyone was so sweet – so many people commented on the fact that it was nice to see my car in the parking lot again.
 
Before all of this happened, I was in the habit of calling my mom every day – once on the way to work and once on the way home. So, when I got in the car, I hooked up my bluetooth ear piece and called mom. It was unbelievable. Today, she was more lucid than she has been in a long time. It was almost like she was home in her apartment and I was doing my usual weekday routine.
 
Later in the morning Pat, the hospice nurse, called me to report on my mother. She confirmed how well my mom was doing today and she said she thought the new medication regime that hospice prescribed may be a contributing factor. I was just so glad to have mom back – and I intend to enjoy it for whatever precious moments I may have it.
 
I called mom on the way home from work and she was just as lucid, if not more, than she was when I called her this morning. We talked about work, we talked about her sister coming for a visit, and she wanted to make sure that all the arrangements had been made to pick up my aunt at the airport and to get her to the apartment, pick up the rental car and map out directions to the nursing facility.  I was blown away that she was thinking with that degree of detail. She also appeared to be in a good mood and positive about getting stronger.
 
I am so grateful that we are having this glimpse of time with her. I hope that she can stay this way until Thursday and beyond when my aunt arrives. I called my aunt to let her know the good news, and she was so happy to hear that mom was doing better. It is a small but also a very big blessing.
 
I told my mom that her condition today eased for me the anxiety of going back to work. I know she is happy about me going back because she does not want her situation to jeapordize my job in any way. And, I know she is aware of the stress I have been under and she wants to see it as minimized as possible.
 
So today was as normal as it can get under the circumstances. I told people at work that the one thing that I’ve learned so far is that difficult situations like this really put the pressures of work into perspective. All of the things that we get worked up about or that seem so significant pale in the light of dealing with the life and death issues regarding your loved ones. So bring on the prairie dog issues, the mosquito spraying issues, or even the contentious opinions about our department’s master plan recommendations – because in the scheme of things, it’s just a job.
 
 
 
 

The Roller Coaster

What a roller coaster ride I am on. Friday I thought my mom had one foot in the grave and then yesterday I go into to her room – she is sleeping and I wake her up – and the first thing out of her mouth is "I’m hungry, when is it time for lunch? So lunch comes – cottage cheese and peaches with pudding for dessert and she proceeds to eat about 3/4 of it. She drinks milk (which she never used to do unless it was with cereal) and then asks me to get her some coffee.
 
I spent a couple of hours with her, and she was as lucid as I have seen her in a long time. I felt bad about leaving, because she looked like she could get out of bed and walk around the block. As I was driving home, I called her to see if she was bored and she told me she was sleeping and that she was tired and wanted to go back to sleep. OK – so much for all of that energy.
 
While I was with her, I got her sister on the phone. My mom had two sisters (both nuns  – Sisters of Saint Casimir in Chicago- one taught at Maria High School and one was a nurse at Holy Cross Hospital). My mom’s oldest sister (my mom was the baby in the family and there was one boy in the mix as well – my uncle Vic who died two days before 9/11 so no one could get to his funeral) died last October. She had anorexia of all things. My mom had pursued a fitness regime ever since she retired. My mom and her oldest sister were always competitive – the looked almost like twins and had very similar personalities. When my mom started to lose weight, Sister Margaret started as well – except at one point it got out of hand for her.
 
I read an article recently that stated that the next highest risk group for anorexia other than young girls are senior women. And anorexia killed Sister Margaret. So now my mom’s other sister, Sister Teresita, is in the process of losing another sister all within one year. I have been keeping in close contact with her, so she has ridden on the roller coaster along with me. Friday my mom was so out of it I wasn’t sure if she would last until her sister arrives this coming Thursday. So on Saturday when mom was so lucid, I got Sister Teresita on the phone so that she could talk to her while she was lucid. She told me she really appreciated that.
 
So all is going along as well as can be expected when I call my mom last night. The first thing I am greeted with is "Jan, what the hell is going on here. They are not feeding me, they won’t take me to the bathroom – they even woke me up at one in the morning (and it was only seven at night).
 
The nurse was in the room with her so I spoke to her. The nurse said that she was getting agitated (something very common with the spread of cancer, especially if it is spreading to the brain) and that they were going to help her go to the bathroom and give her something to calm her down.
 
I called my mom a few minutes later and she did confirm that they took her to the bathroom but that they literally had to carry her back to the bed because her legs were not working. My mom’s take on that was, if they let her get out of bed and use her legs, they would work. The problem is that this is probably a result of the cancer spreading to her brain and that ultimately affecting her legs.
 
I spoke to the nurse this morning. She said my mom was agitated for a while but then calmed down. My mom wants me to get them to put a catheter back in for her – but the doctor is hesitant as she can, when she goes into one of these episodes, pull it out like she did the other day and that is not safe for her to have that inserted and taken out on a regular basis.
 
The sad thing was that at one point my mom said to me "Are you on my side or their side". The cruel part of all of this is that you get periods when the person is lucid and then periods where they are not, but there are also periods where they slip in and out – and that is the toughest. One minute they are there, and then they combine it with delusion – and consequently you do not know what to believe and you begin to wonder if they are telling the truth and the others are lying to you.
 
I have spent enough time there to be very comfortable with the care they are giving my mother. Also, when her sister comes this week, she will be spending a lot of time there – so she will be able to see if anything is awry.
 
My mom said something to me yesterday that makes me feel that she is frightened about death. She asked me about her decision not to recessitate.(spelling?) – She asked me if she changes her mind and wants to be recessitated, would that affect the type of care she had. I told her that her health care decisions were hers and that I would only make them when and if she ever becomes unable to make them. I also told her that her care would be consistent no matter what she decides. I then asked her what she was afraid of – and she told me that she was afraid that people were closing the lid on her. I had that conversation with her yesterday afternoon – and she repeated that she did not want the lid closed on her again in her agitated state last night.
 
I am going to let the hospice social worker know about this. It seems that my mom is fearing that we are giving up on her life, and nothing could be farther from the truth. I think she needs to have that reinforced as we move forward.
 
So, I called her again this morning and low and behold, everything is fine – she ate breakfast and she was tired and wanted to sleep. So I told her I would call her at dinner time (I have a lot to do today and will not get a chance to get out there – plus I am going back to work tomorrow after being off for a month and I will not be able to be there for as much time as I have been)  and we’ll see what happens then.
 
As you can see, this has been up, down, up, down, up, down. It is very tiring emotionally and the only comfort that I have is that, in my heart, I feel I am doing all that I can and the best that I can for her.
 
I think all of us, at some point in time in our lives, will be faced with this. Hopefully we can all learn from our experiences and help each other out while we are going through them. That is all we can do.

Terminal Agitation

Yesterday was a very emotional day. I called my mom in the morning and although she did know who I was, I could tell that she was hallucinating more than not. A short time later, the hospice nurse called me and said that mom was experiencing terminal agitation. She pulled out her catheter and was very anxious, grabbing at things that were not there and talking to people in her past.
When I asked the nurse to define terminal agitation, she said that this was part of the dying process and very common for people to go through. No one can predict when things will happen – and she could rebound again, as she has in the past. It is just such a roller coaster ride to go through this.
I told a close friend of mine, Kathy Hodgson, yesterday that I was just so tired of crying. My eyes hurt all the time and I am always tired, but when I lay down to sleep I can’t.  I am a little taken aback at how deeply this has affected me. I knew I always loved my mom, but I guess I never realized to what extent. I look like her – I have a lot of her characteristics. And I feel like I am losing the one person who probably knows me better – inside and out  – from anyone else. This is my last experience with unconditional love, and losing that is hard.
When I went to see her yesterday, at first she knew who I was. Then as time went on and I would ask her who I was, she would call me by various names – some I did not even recognize. But, I knew she knew I was there. The nurse finally gave her something to calm her down and she slept. I just sat in the chair next to her bed and stayed with her for a while. Then I kissed her and left.
This morning, the nurse said that mom had a restful night – but I am not sure how lucid she will be today. I am going over to her apartment to do some light cleaning up before her sister arrives on Thursday. I hope mom hangs on until then, but I did tell her yesterday that if she needs to go, that I will be ok and that I will handle everything.
I go back t work next week, and even though I am looking forward to it, it bothers me that I will not be spending as much time with her. It’s true, there is not much I can do for her now, but I do not want her to think I am abandoning her. I know somewhere deep within her, she knows that.
The people at the nursing facility are amazed at how many visitors that she has been having and much she is loved. They told me it is refreshing to see that someone is admitted and not just forgotten about. I really admire the people who work there – what they do on a day-to-day basis is incredible. And it is interesting, there are very few men who are doing this kind of work – it is such hard work and the pay is not that great – but it is such important work. It is a shame these caregivers are not being compensated more for what they do.
Bob’s visit went without a hitch. I was afraid that maybe after he visited that she might go into a decline. We’ll see what the next few days bring.

Hospice

Yesterday I signed my mother up for Hospice. That is a very scary thing, as Hospice is equated with eminent death, and in reality part of that is true and part is not. Hospice is a program, not a place and what Hospice professionals due is deal with the physical, emotional and spiritual needs of a person who is facing the fact that, due to a medical diagnosis, they in all probability will die – most likely within six months or less.
 
I felt compelled to bring Hospice in after what happened this weekend with my mother’s medication going out of wack and with her being dilusionary and hallucinating. Hospice professionals are dedicated to providing as much quality of life and managing pain in these types of situations. I wanted to make sure we had the best dealing with my mother’s situation at this point in time.
 
What Hospice does is allow natural death with comfort support. The goals of Hospice are not curative – the program is comfort care oriented and emphasizes the alleviation of symptoms and promotion of quality of life. At this point, I feel this is all that I can do for my mom.
 
I wasn’t sure how I would feel about this – but I found that I was ok with it. I want to make sure that my mom has quality of life and dignity as we face this – and now I have made sure that that will occur.
 
Mom is much more lucid which I am so happy about. That medication imbalance really caused crazy things to occur. In a way, it was a blessing in disguise, because faced with the fact that I may have had the last lucid conversation with my mother and then seeing that I have not – it has made me much more tolerant and much more grateful for what we have left.
 
On another note, my brother is coming into town today. My brother and my parents have/had a love-hate relationship for many years. As for me, I have estranged from him for many years – yet I felt he needed to know what was happening to mom and make his decisions from there.
 
He is speaking like he wants to reconcile with me, and I am not sure about that. There have been many things that have occurred during the years that were not talked about and need to be resolved. I am not sure that this is the time or the place, but I also do not want to move forward without some recognition of the issues that caused the situation and how things are going to changed.
 
My close friend Kathy says I need to think about the concept of forgiveness – and I am willing to entertain that. But I also know that not dealing with past issues and sweeping them under the carpet only puts them in a place where they will resurface during the next inevitabel conflict. So I need to resolve for myself how that will work for me. I am glad that he is seeing her. It will be interesting to see how she treats him.
 
Anyway, despite everything, yesterday was a pretty decent day. My concept of normalcy has changed since all of this happened, but I think my "new normal" was yesterday – and I was very grateful for some normal in my life again.

Seeing mom today

 Today my mom was so much better. She was coherent and almost back to being herself. In talking to the staff at the nursing facility, it seems that my mom had an unusually high level of digoxin (heart medication – mom was diagnosed with congestive heart failure in March) in her blood. According to the staff, that could have been the cause of her being so delusionary over the weekend.
 
It was pretty scary to see mom that way. She had this very blank, far away look in her eyes. She was seeing things that were not there, pulling at things in the air, talking to people that were not there. She even tried to get out of bed to turn the tv on – and the nurses found her on the floor. When I told her about that today, she had no memory of it.
 
It is so hard to know what to do for her. The doctors say that she hads 2-6 months to live, and so it is hard to know if these episodes, when they occur, are caused by the medication or by the cancer progressing. It is so important for people in these situations to have someone advocate for them. Although the doctors and nurses try to do there best, communication can get miscontrued and you need someone who is on top of things all the time.
 
I have off of work for 3 weeks now and I am anxious to get back – if just to have some time that I am concentrating on something else other than sickness, medication, death, etc. This experience has been very hard for me, and it has given me a new appreciation for the protected life I had for such a long time. We will all be faced with this at some point in our lives, and this is very difficult and gut wrenching when you are making decisions for someone who is so important in your life. I know my mom knows that I am doing my best – but you feel like your in Las Vegas playing the odds of when someone will live and when they will die and what is the best thing to do for them at the particular stage they are in.
 
Everything I have read about small cell lung cancer, which is what my mom has, is not pretty. Chemotherapy is the preferred treatment, and even in the best of all situations, the prognosis is no longer than 5 years. Without chemo (and the doctors do not recommend this for my mom as her lungs are so scarred from 60 years of smoking) the prognosis is less than one year in the best of circumstances.
 
Every time I see someone with a cigarette in their hand, I want to rip it out of their hand and have them see what my mom is going through. Her cancer is most typically caused by smoking. And the deadly part about it is that it generally is not detected until it has spread and caused some other type of complication. In my mom’s case, it was a tumor that pressed on her spine and caused a compression fracture of her vertebrae (bone resting on bone). The pain progressed until it was unbearable and then she was hospitalized and diagnosed.
 
It is very therapeutic to journal this journey. I will continue to so do on a daily basis.