Monday, December 29, 2008

A Gift

We brought my mother to my sister's house on Christmas day where she sat embraced by her family...daughters, sons-in-law, grandchildren and great-grandchildren as presents were exchanged, children were excited and she was loved. We were loved, all of us, each in our own way and for our own reasons we loved and were loved and shared the best of Christmas with each other. I worked at not watching her, not forcing the moments of our time together on that day to burn into me so I could hold the memory of this Christmas forever. It was hard to look away.

I never knew my Grandmothers so what I know of how grandchildren love their grandmothers comes only from watching my children, nieces, nephews and grandchildren. The love I saw on Christmas came in the form of my nephews' hands extended to help their grandmother up the steps, genuine smiles, the deep from the heart smiles from 'the girls' that revealed raw emotion that most of us don't allow to surface often enough, and throughout all the food and wrapping paper and laughter there were my mother's great grandchildren, those beautiful children who wove themselves into the fabric of our family and the celebration of our time together.

We took my mother back to the Nursing Home and as she walked in I watched her greet everyone in a style becoming a reigning monarch. She drew broad smiles from staff, warm greetings from visitors and mild glances from others who live there. She announced her return to all who would listen and even those who couldn't. Her room awaited and she sat in the chair beside her bed with the same sigh she uttered when she returned to her chair in her house after an outing. A sigh that, for me, translates to a degree of comfort, a level of contentment, maybe even the beginning of satisfaction. Whatever she truly felt on that day, at that moment I have no way to know. But what I saw, what I watched, what I believe she felt was acceptance. Acceptance of her, acceptance for her and at some level acceptance of this transition in her life. This transition that has affected all of us so deeply but none more than my mother.

As she fades away from us I will try to hold fast to what I saw on Christmas day. Her ability to love and be loved. A gift that now extends to the third generation. A gift she has given freely and gladly. A gift of true value.

Monday, December 15, 2008


This weekend we shared a day with our daughter and grandchildren of fairy tale proportion. A day of preparation, a day of anticipation, a day of celebration. On this day we carried the boxes down from the attic, the boxes so well known to us even though they are seen only twice each year, once when we unpack the decorations and again when we repack them. The boxes that hold our years of Christmas. Boxes that look very much like those we are packing at my mother's house. Unlike those boxes, these hold the excitement of Christmas, excitement clearly marked in black magic marker.

As we unwrapped the ornaments, put the baby in the manger and tested the tree lights we told stories of our past, stories of family gatherings, Christmas Eve with 'the cousins', Christmas mornings with our parents and grandparents. We hummed along to Christmas carols and made subtle adjustments so all the bulbs didn't remain on one branch. On this day we brought Christmas past into our home and into the lives of our grandchildren.

When we thought the day, this day, our day, could not be more we were treated to a visit from Santa himself. In our house, on our day, a family memory was made. A memory that will live on in our family for years to come. A memory that will one day be brought down in a box from the attic and shared on a day like our day. A day that bridges gaps. A day that brings us together. A day when life finds its way down the stairs, out of the boxes and into the lives of those we love.

Monday, December 8, 2008

The Right Time

My daughter called me today to tell me she shared my blog with her friends. She read some of their comments to me at just the right time. A time when I needed to hear kindness, needed to hear her love, needed her. She's like that, quietly entering my days at the right moments, moments when I need to be reminded that work is not my entire life and sadness is not the only emotion I can feel.

My sister is like that, too...there at all the right times. Tonight our right time was at our mother's house, just the two of us drinking tea at the kitchen table surrounded by boxes of our mother's life. We talked of old times and new times and good times and bad then moved things from one room to another, pretending to pack, pretending to be ready for this transition in our mother's home.

Whether we are ready or not, transition comes and we must rely on ourselves and each other to help us through. I am blessed to have people in my life who do just that....let me rely on them. I hope I return the favor.

Sunday, December 7, 2008

The Hardest Part

I sat with my mother this afternoon and did something I've never done before (well, I guess I have done it but that was when I was a teenager so it doesn't really count!). I lied to her. Straightforward, bold faced lie. When she asked me if her cat was okay and was everything okay at her house I told her the cat was fine and so was her house. In fact, we haven't seen the cat for several days and yesterday we spent the day packing up her belongings, tearing up her carpets and set her living room couch and chair on the lawn in front of her house with a sign on them that read "Free". They were gone before nightfall. The couch, her couch, the place she sat every day to watch tv, read or visit with her friends and with us now sits in someone else's house while my mother rests comfortably in the Nursing Home fully trusting that we are caring for her things. She doesn't question it. She trusts us. That's the hardest part, her trust.

Intellectually we know we are doing the right thing. I know she won't come home again. Her dementia worsens every day now and it is more clear than ever that she is in the right place. It is evident. We see it. We know it. We believe it. We just are having a little trouble getting our hearts to accept it.

My sister asked me the other day if I thought the dementia patients who are no longer able to speak were screaming in their heads. I don't know if they are, I hope they are not because I know from experience how exhausting that is.

Sunday, November 30, 2008

This Is The Day

Thanksgiving is over. The holiday that brings families together was a rough one for me this year. My sister and I worried endlessly about how we would celebrate this day with our mother. We talked it over and over and over and when our plan was finally made we continued to worry that we still had not managed to carve out enough time for our mother, time to be with her, time to share our thankfulness with her. (A trip to either of our houses was out of the question since simply moving her room from one side of the hall to the other set her back weeks!) At the end of the day, with our worry behind us and hours of time spent at the Nursing Home, our celebrations with our families orchestrated around our time with her, my mother looked up from her slice of pumpkin pie and wished me a Happy Easter.

My tears mix easily with laughter these days and they arrive often unannounced and with a rapidity that sometimes alarms me. This afternoon as I sat between my mother and my husband and listened to a choir sing in the gathering hall of the Nursing Home I thought of all I had to do at home and all I had to face in the coming weeks. I thought the choir was off key and the songs poor choices and then I looked at my mother. Her smile was genuine, her pleasure in this music apparent with her foot tapping and her hands brought together in soundless claps and all I have to do for the weeks ahead vanished and I let the tears fall and sang along with her...."This is the day that the Lord has made, let us rejoice and be glad in it.....This is the day that the Lord has made!" There are some things about dementia that aren't that bad.

Sunday, November 23, 2008


It's difficult to know where to begin, where to focus after several days of emotions that soar one moment only to crash the next. Grief is exhausting and once again I find myself weary. Weary and yet thankful for the friends who support us and love us and family who do the same. At this point in our journey I would not be whole without them.

There is subtlety that comes with having someone you love live in a Nursing Home, an unspoken language of averted eyes, nods of acknowledgement and sadness, always the sadness. This is the almost telepathic communication the families have with each other as we pass in the halls, the dayrooms or even in the parking lot. We do not have this connection with the staff. Theirs is different, their connection is with our loved one not with us. They know our person, my mother, in an intimate way that I no longer claim. They have not replaced me or my sister in my mother's life, they have simply taken up residence in her everydayness, her waking and sleeping, her meals and snacks, her jokes and smiles. They can do this because they haven't lost her.

My mother made a connection this weekend. A connection I have dreaded. The connection that she no longer lives in her home, her safe haven. Her world has dwindled, shrunk, evaporated into half a room with a bureau and a chair. She understood for the first time that she must stay at the Nursing Home now and no matter how many times she takes her photographs off the bulletin board and puts them in a bag, we will take them out and pin them back up for her. That is her view now.

My view is to smile at the staff, say hello to the others who live there and share my sadness with the other families.

Wednesday, November 19, 2008

Caring Isn't for Sissies

Today we sat in a small room off the Social Work office at the Nursing Home where my mother now lives. In that room we listened as the Therapists, Nurse and Social Worker talked about the woman our mother is. The woman who asks us every day when she is going home. The woman who easily asks for help from the staff, who greets everyone in the hallways, day room or lobby with a smile. The woman who participates in activities and leaves them without hesitation when a friend stops by for a visit. The woman who will not return to her home.

At another meeting, this one at the hospital, I led the discussion of what to do with patients who have no resources. Patients who have no home. Patients who no longer require acute health care but to return to the street places a burden on our community resources. Resources that are already strained beyond capacity. For my staff, those who receive the calls, hear the pleas of the case workers who beg us to keep a patient just one more day, one more day to gain strength, one more day to find resources, one more day to not be on the street, the gap between what we can provide and what is needed widens daily and they carry that burden with them and try to explain it.

We have this discussion regularly but today, in this economy with winter approaching, the reality of having to say no, of sending patients with health care needs out of the warmth of our hospital to stand in line at the soup kitchen, to sleep on a mattress on the floor of a shelter, to have their health care needs met at the Homeless Health Clinic, this reality hit my staff hard. It sat on their shoulders and weighed them down and they turned to me and asked what they are supposed to do. What we are supposed to do. What our community is supposed to do. The question is so much bigger than us.

Today I faced my mother who cannot go home and patients who have no home to go to and I was struck by the compassion and depth of caring people in healthcare have. The looks on the faces of the Nursing Home staff as they gently guided us to the realization that we were right, my mother will live the rest of her life in the Nursing Home, matched the looks on the faces of my staff as they accepted the fact that we have no alternative but to send patients who no longer need our level of care back to very difficult lives that rely on soup kitchens and shelters.

What we have to do is not always what we want to do and we may not have the capacity to change that. What we can change is how we do it, how we treat the people who need us, the people we care for. Whether we care for them personally or professionally, what matters is that first and foremost...we care.

Sunday, November 16, 2008

Day After Day

It takes little effort for me to bring forward the emotions I felt as a child when I had to be away from my mother for any length of time. My need to be with her, to have her in my sight, was more than strong, it was a necessity for me. Perhaps it was more my need for the familiar. My longing to be surrounded by the known, the comfortable. I still have that to some extent.

I want my mother home. Not simply home in her house but home in her. I want her memory restored. I want her restored. I want to go home. When I stopped in to see her this afternoon the picture that rests on top of her television, a picture of her with her beloved sister, was not there. I asked her where it was but she didn't appear to know what I was talking about. As my daughter engaged her in conversation I looked through her drawers and discovered the picture. Tucked in a bag with a few candy bars, a pair of socks and some tissues. She chose these precious items to have ready. To be prepared to go home. In preparation for and in search of a return to the known.

I sat in church this morning and as I rested in the company of my friends surrounded by the stone and stained glass of my church home I was aware that one of the things I miss the most is the known, the expected, the routine. In the same way I anticipate the next note in the hymn because I've heard it so many times, sung it so often, I need to know what comes next. I don't know the next note in our journey with my mother. I cannot anticipate what comes next and that leaves me ill prepared, uneasy.

The next steps will come to us, but they will come only as we take them. But we take them with friends and family to support us. Friends and family who love us and love her. The emotions stir and the uncertainty rests in my chest but I make my way through the days, the days away from my mother and try to take comfort in the known, the routine of my life and hope that she is able to do the same.

Wednesday, November 12, 2008


Today I am weary. I made excuses to myself and didn't visit my mother. At the end of the day at the hospital, after meetings that brought more projects to work on and endless discussions of patients without resources and staff who put their heart and soul into their work only to find that there is no end to the causes, no end to the patients in need, no end to the work itself, I made the choice to go home to my family and give my last ounce of caring to them.

Today is a weary day because it is the 12th of November. The day two years ago when we lost my brother-in-law to cancer. A day of great sorrow for our family. A day of loss that comes in waves. On my mind is my sister-in-law and my nieces. If I relive this loss today what must their day be?

Today is a day of emotion as reality and memory mix and stir together. The image of my mother in her bed at the Nursing Home, eyes clouded with confusion and fear, prompted when someone asks how she is. The remembered sound of my brother-in-law's voice as he told, or attempted to tell a joke but missed the punchline (he never told a joke right on the first try!) when I passed someone in the hall whose ID badge carried my brother-in-law's name. Another image of him on his Birthday, dressed as Elvis. The soft breath of my granddaughter as she crawled into bed with me this morning, a snuggle before the start of the day, a snuggle I fell into and thanked God for. An email from a long lost friend from High School who lives in California but wants to come home. Imagine that, coming home after all these years! The unexpected voice of a friend on the phone and suddenly plans for the weekend ahead take shape.

Today is a day of life. Part sadness, part joy, part sorrow, part thankfulness. Not equal parts but parts nonetheless. Parts that combine to form the whole. The entirety. The broad balance that pulls all the parts of my life into focus and lets me see that at the end of the day, a day like this one, a day of life, I have sadness, I have joy, I have sorrow, I have thankfulness. Most importantly....I have life.

Sunday, November 9, 2008

The Hard Part

The hard part comes when my mother calls me and she is scared. Scared because she doesn't understand where she is or why people have given her a bath, a real bath with all her clothes off. This is the part that scares her the most, I think. This and the fact that she often truly doesn't know where she is. And if she doesn't know where she is, how will we know? I can't imagine that fear. When I walk into her room her face brightens with recognition and then as quickly as that smile arrives it fades and her eyes remain on me for a few seconds then wander to her photo album or her blanket or nothing at all.

In our routine what I see now is the complete lack of privacy for anyone in this situation. We visit and share our visit with staff who come in and out of her room freely, her roommate who may or may not hear and understand our conversation, anyone and everyone in the dayroom or in the lobby where we often sit hears our conversation and often joins in, as we do with theirs. In my career in health care I've often heard of the importance of developing a community within the long term care facilities, but it never occurred to me that some may not want this community. I don't. I want privacy when I visit my mother. I want her to myself. I want her to herself. I want my mother. Knowing I will never have her again, do not have her now, that's the part that scares me the most.

Wednesday, November 5, 2008


Over the past few months I have experienced bouts of insomnia, not that this surprises me given the events in our family, but nonetheless sleepless nights bring with them random thoughts and escalated worry. When I wake at 2 or 3 in the morning my first thought is of my mother. I picture her in her bed at the Nursing Home and wonder if she is asleep or if the noise of the CNAs making their rounds has disturbed her. I worry that she is afraid, that the dementia hasn't stolen enough of her to quell fear. I worry that she is awake and afraid and doesn't understand why I am not there. The source of this particular fear is her concern that since she doesn't always remember where she is that we won't know either and won't find her. How well I remember that fear when my children were young and I would turn my back for a second to manage one convinced that the others would be stolen or lost to me. Combine this worry with sleep deprivation, add concern for a new son-in-law facing deployment, his new wife, my daughter, contemplating more than a year of separation from her husband and top it off with an equal blend of my own husband, second daughter, grandchildren and a career in healthcare and the insomnia becomes a natural result.

I didn't visit my mother today. When I left my office and walked through the hospital toward the parking garage my exhaustion overtook me and I knew I could not go. I also knew she would forgive me. She would say it was okay, that I was tired and needed to go home and rest. She will love me anyway. These are the thoughts that will keep me occupied tonight.

Sunday, November 2, 2008


I still cling to the afterglow of our daughter's wedding. The beauty of that day and the confidence with which she entered into her marriage fills me with admiration for her and the woman she has become. As I watched her that day I was struck by the connection of the women in our family, the generations in our family (immediate and extended!) who have passed from one to the other the love of our family, the strength of our women and the joy of our lives together.

My mother passed these things on to my sister and to me. We have passed them on to our daughters. Our daughters and her daughters-in-law now pass them on to their children. How blessed we are to have had such strong role models. Women who loved their lives. Women who lived their lives with strength and dedication to their families, to us.

As I sift through the memories of my daughter's wedding my wish for her is that she recongize the beauty in her life, in her heritage and holds tight to it. Holds it close to her heart until it is time for her to pass it on.

Friday, October 31, 2008


We have fallen into a routine. After all the pain of the past several months, the agony of indecision and the horror of our descent into dementia with our mother, we now find ourselves at the Nursing Home every afternoon, styrofoam cups in our hands, Oprah on the big screen tv in the dayroom and our mother behind her walker as she asks yet again how long she has to stay. We tell her we'll take it day by day and remind her how weak she is and how sick she was. These are the moments when her eyes clear for the briefest of moments and she looks at my sister and at me. She looks at us and knows she won't go home again. She knows it and we know it and yet saying those words to her is impossible for us to do. Impossible for us to believe.

My routine has taken back its shape after the mayhem of the wedding. My days are once again filled with the problems of modern day healthcare and doing more with less for more and more patients and trying to make sure my staff has all they need to face their days. In meeting after meeting, phone call after phone call and email after email I work to cover it all, meet the needs and demands of those in need and an organization that has grown and is growing rapidly. The days are full. At the end of the day I shut down my computer, lock my office and drive to the Nursing Home where I sit with my mother, drink a cup of tea and watch Oprah. Never telling her the truth. The truth she already knows. That this is our routine now.

Tuesday, October 28, 2008

The Wedding

This morning I am alone at my house. Alone in the stillness. The silence wraps around me and settles as if the walls themselves are in need of recovery. Recovery from the chaos and mayhem that surrounded our past week. The walls of my office, my deep purple walls, a color that convinced my family I had suffered a traumatic brain injury, absorbed the pre-wedding events that accompany every bride's preparation for her wedding. The last minute rush of makeup, petticoats (what a delicious word....not such a delicious garment), hair pins, dresses, shoes and the main event.....the gown. This room, this purple room held my daughter and 6 amazing women who love her (7 if you count me!) as they prepared. They followed the rituals that they've learned from all the weddings before them. Those rituals that appear corny until it is their turn, our turn, her turn. A garter slipped on the bride's leg by the Maid of Honor takes on enormous significance when it is her turn. The garter, a simple band of fabric covered elastic that serves no purpose in these days of pantyhose and hose-less brides, became a focal point of emotion for me on that day as I watched it slip up her leg. Saw the camouflage colors of it hide itself under her gown. Hide itself and hold her leg with the reminder that her husband to be, my son-in-law to be wears those colors. He and his friends, his groomsmen who at the very moment we struggled with makeup and petticoats and gowns donned the shirts, pants, jackets and medals that signify their ranks and military history. Each of them with chests adorned with color, row after row pinned in order, precise placement to match the stripes on their sleeves, their shoulders, their bravery.

To say our day, their day, was magical understates the beauty of this wedding. To say our time leading up to the wedding was fun defiles the events of our week. Eventually words will come that capture the moments, the excitement, the joy of our daughter's wedding. But at the moment I wait for pictures. Pictures that capture the joy we shared for 3 days in our lives. Joy my mother shared with us as she sat in the church where she was married, where my sister was married, where I was married and held my hand as Michelle and Jay said their vows. Vows that declared their love for each other, their promise to each other, and their belief that life is good. How right they are!

Tuesday, October 21, 2008

They Don't Know

I began my career in the medical profession as a Nurse's Aid in a Nursing Home. It is there that I learned to care. It is there that I saw dementia for the first time, every face of it in all its humor, its sadness, its beginning and its end. It is there that I helped the families of these victims of this disease. I helped them see that there loved one was safe with me, with us. That we cared. I loved that job.

Tonight my mother is under the care of the people in that same Nursing Home. Someone will take her into the bathroom and undress her, wash her and help her into her nightgown then walk her to bed, not her bed, but the bed assigned to her. The bed where my sister and I left her this afternoon. The bed from which she glared at me and said, "You tricked me. I want to go home."

All those years ago when I told those families that it was okay, we'd take good care of their loved one I couldn't possibly know that it wasn't true. Not for them. I know that now because now I know that no one will take care of my mother the way I want to. No one will love her the way my sister and I love her. They won't because the can't, they don't know what we've lost. They don't know the pain of this day.

Sunday, October 19, 2008


Yesterday memory came alive. Not just for my mother, but for my sister and for me. It came alive in the form of a friend. More than a friend. A friend who feels like family. A friend who is family. Family whose voice evokes childhood games, bicycle rides, seashore adventures and days and evenings filled with shared joy and laughter, the joy and laughter of our families, blended together in our home in Portland, their home in Barrington, Rhode Island and every summer a cottage in Maine with the endearing name of 3A.

Our memories came alive together through the pictures she brought and the stories we shared. Right down to the potato chips we bought for lunch (a treat our mothers bought only when our families visited...we conceded to our modern consciences and bought the baked chips!) we paid tribute to the gift our families were to each other. The joke for both families is that we have known each other since before we were born. When that is your history, your heritage all else falls away. All else fell away yesterday. The loss of my father, my friend's father and mother and even the loss of my mother faded as we sat around her bed and listened to her tell the stories again, the stories we know so well, the stories that we now tell as if we were there. We sat together in her hospital room and laughed, laughed out loud, full laughter that so often does not reside within the walls of the hospital, that laughter that does reside within our families. We laughed and knew that tears will come soon enough. Sadness will come soon enough for all of us. Grief is already here.

Yesterday memory came alive. Yesterday friendship brought us together and held us in its hand. Yesterday we were thankful once again to have had such strong examples, strong teachers of life, love, family and friendship. Yesterday I was reminded how big our life is and I am thankful.

Thursday, October 16, 2008

Day By Day

We take it day by day now. Day by day to the wedding (9 days!) and day by day with my mother. This day was not a good one for my mother, it was a good one for my daughter. Where does that leave me? At my mother's bedside, her thoughts and questions rabid in their wandering, my inability to anticipate what would come next and how I would respond left me weary. The compassion of the Nurses, the thoughtful looks from my colleagues as they see the pain of this disease, we see it everyday, we who care, but when it is one of us, one of our own who suffers the pain intensifies. I see the pain in their eyes as they see the pain in me. Today I buried myself in my work, intellectualized the pain of my loss and discussed dysphagia, potassium levels, oxygen saturation and barium swallow studies in full Nurse mode. I distanced myself to make it easier for them, for those who care for my mother. Another betrayal.

It was a good day for my daughter, 9 days away from her wedding. A good day as she prepares to be a bride, a wife. Her day filled with wedding minutiae and a welcome call from a recruiter with a job interview. A good day as friends call and email and share the excitement. I assure her her grandmother will be at her wedding. Do I betray her with this promise?

Tomorrow is another day. I'll take it and all that comes with it. A good friend once told me, "Life is big." I hear his words and agree.

Wednesday, October 15, 2008

Strength Gained

Today was fluid. From the moment my husband woke me this morning (long after the alarm....he's an early riser, I am not) my day ebbed and flowed among the many roles I sustain. From the early morning hugs for my grandchildren, waking my daughter when the bathroom was free for her (she's not a morning person either....she gets that from me), a Clinical Ethics Committee meeting, a phone conference with the Acute Rehabilitation Hospital detailing how many beds they have available and which of our patients can they take, conversations with the Central Bed Manager about how many patients will be discharged and how many more wait for a bed (if you don't work in healthcare the latest crunch of the healthcare system is bed availability and patient flow....or lack thereof), several visitswith my mother who looked better today but still had not had a speech and swallow evaluation performed which meant she could not eat or drink anything and had not for almost 36 hours (she was receiving IV fluids), the phone call to the Director of Therapies to find out why the speech/swallow hadn't been done, emails with my sister to let her know how Mom looks and what's happening, a celebration for my staff of National Case Management Week (hug a Case Manager....they've earned it!), emails from my daughter with last minute details (10 days to the wedding!) and how is Grammy?, back to my mother's room to learn that the speech/swallow had been completed (thickened liquids and blended foods only, a tray was ordered), plans for the Department Holiday Party, conversation with my other daughter about her trip to her sister's this weekend, calls from my husband (his truck repair was only $941 and don't forget to stop at the ATM on my way home), another phone conference with a colleague in Tuscaloosa, Alabama to develop a dashboard for my Department (again, if you're not in healthcare you'll just have to take my word for it....this is exciting stuff!!!), an off the cuff hallway explanation of the current state of Case Management at our hospital, an unexpected reunion with an old friend (whose mother is in the hospital and can no longer care for herself.....hmmmm), another unexpected visitor (my niece who works as a liaison occasionally at my hospital), another visit with my mother so my niece could say hello, end of the day conversations with my staff about the lack of resources in the state and increasing scrutiny by insurers so patients are stuck in the middle and that's simply not fair and what are we supposed to do about that, home in time for dinner with the family (Blessing upon husband cooks!), a little homework assistance for my grandson, snuggles after bathtime with my granddaughter, good night to my husband (he works nights), phone calls from my mother to let me know she's going home tomorrow (she isn't), my weariness exhibiting itself fully as I tell her probably not and she'll need some time in a Nursing Home (coward....some time, not the truth, all of her time), lunch prepared for tomorrow, another call from my mother this time telling me she's not going to a Nursing Home and that I've ruined her evening (we've had the discussion for days now but it is only old news to me, she hears it for the first time every time), calls to my sister to let her know I ruined Mom's evening to now, time at my computer to pull it all together and frame it before I start again tomorrow.

Today was fluid. The everyday events of my life combined in a seamless river of activity, responsibility, accountability and emotion. I led, I followed, I asked, I answered, I celebrated, I laughed, I complained, I hugged, I loved, I thought, I talked, I smiled, I observed, I appreciated, I prayed, I cared, I survived. And at the end of the day, on my way out of the hospital parking garage, from that roof I saw the most amazing sunset, so amazing I stopped the car and watched it, watched the colors change, the sun rays reach down and the outline of Mount Washington so dark in contrast to the sky it looked like a backdrop in an old movie. From that perspective, that view that is one of my favorites I was thankful. Thankful for the beauty of where I live, the people in my life, the hospital where I work, the people I work with and most of all thankful for a day, a normal day in my life, my filled up life.

Today was fluid. Tomorrow will be, too. And the next. And the next. And the next. Michelle's wedding will come. My mother will move to the Nursing Home. My hospital will not solve the healthcare crisis (but we'll keep trying!). Through it all I will move from one role to the other, laugh and cry, regret and rejoice, tell my mother I love her, snuggle my grandchildren, bless my husband for who he is, love my children, hold my family and friends close and know that when it is over for me, when it is my turn to prepare to leave I will have given it my all while I was here. My mother has taught me well.

Monday, October 13, 2008


We are a family in transition. For each of us there are challenges, joys, sorrows, beginnings and endings and we see in all of us the past, present and future. As my mother weakens in her hospital bed my grand-nephew incubates in my niece, my grandaughter leaves her crib and sleeps in a bed, my grandson's first loose tooth places him squarely in the midst of the 'big boys'. Our daughter Michelle counts down to her wedding (12 days!) while our nephew and his new wife arrive home from their honeymoon. My sister's granddaughter crawls to the coffee table and stands, her smile reflected in the eyes of her parents. The sweet joys of life.

There are more changes, shifts in our lives and the lives of those around us, although none more profound than my mother's. None that equal her advance from the hospital to the nursing home. Not just any nursing home, the one where my career began, the one whose halls and rooms I know so well. The one where I learned to bathe, position, and feed those who lived there. The one where I learned to care.

My sister and I have been told by so many of you that we should take heart in how much we cared for our mother, that we've done more than could have been expected of us and we should not feel guilty. In my head I know this is true. It's my heart I'm having trouble with at the moment. It's hard to forgive the frustration and even outright anger I felt during some of my time with her even though I knew at the time that one day I would miss being at her house with her. That day is here already. That day was today. Today I told my mother she wasn't going home. She said she didn't like that, but that was all she said.

I've prayed for a lot of things in my life, strength, tolerance, peace, money (I know...I feel guilty about that one), mended relationships with family and good health. I've prayed for my family and my friends, for healthy babies and happy marriages. I've prayed for safe airline flights, good decisions and happiness and all the things most of us ask God to help us with. Big things and little things, majors and minors. Today my prayer is for time. Time for transitions. Not years, not even months. Simply days. Enough days so that when Michelle walks down the aisle to join Jay at the altar where my mother and father were married, the altar where my husband and I and my sister and brother-in-law were married, that my mother is there to share that moment with us. That she sees the third generation of our family married in her church, our church.

As most of us do when we grieve I have become acutely aware of the transitions in our lives and have attached deeper meaning to everyday occurrences. The lyrics of a song, the clouds around the moon, even the date on the calendar can evoke tears and a sense that life is profound. Profound when it is new, profound when it is old and profound in all the transitions that take us from one to the other.

Thursday, October 9, 2008

The Right Thing

Today I did the right thing. In the ultimate act of betrayal of my mother and the love and kindness she has shown me, my family and the world around her, I had her admitted to the hospital because she has grown so weak she can no longer walk alone, climb the stairs or even dress herself. With her words slurred beyond recognition I convinced myself she had suffered a stroke or perhaps had bled into her brain after her last fall. Neither had happened, the CT Scan revealed only significant progression of her disease. I don't know whether to be thankful for that or not.

She let me dress her and lead her from her house because she trusts me. Trusts me to do the right thing for her. Trusts me not to deceive her. She trusts me to be honest with her and yet today I was not honest with her. I didn't tell her I was taking her to the hospital because she can't stay home any longer. I didn't tell her we can't care for her in her home any longer. I didn't tell her she can't even go to assisted living because she's too weak. I lied. I told her the Doctor wanted her to go to have some tests. The worst part about it all is that she believed me. She went willingly because that's what the women of her generation do when the doctor tells them to do something. They go willingly and do it. She went because she trusts me.

I took the coward's way out and in doing so I robbed her of goodbyes. I stole from her the chance to look at her things, her home, her cat for perhaps the last time in her life. I took her away without letting her know she won't be going home again. She never took anything from anyone in her life and today I took everything from her.

In my head I know it is the right thing. That she cannot care for herself any longer. She cannot be alone and we are not able to provide for her at home any more. We have done all that we could, more than many who have lived this nightmare and maybe less than others, but it is all that we could. The time has come. I wish I could breathe.

Sunday, October 5, 2008

The Collapse of Joy

Today my joy of yesterday collapsed around me and I desperately wanted to be at home with my family, with my husband and daughters, my grandchildren and soon to be (19 days!) son-in-law. I wanted to be there for the blueberry pancakes my husband cooked, to welcome our grandchildren into their day, to talk 'wedding stuff' over a hot cup of tea and Tony's donuts.

My mother did not want to go to my house today. She wanted to stay at home. Her home. I insisted. She insisted back. I insisted more and since I'm the one in charge, we went. I am not in charge, I'm simply more selfish than she is, so I won. I took her to my house where my grandchildren were delighted to see their great-grandmother. That helped alleviate some of my guilt, but not enough. Not enough for me to forgive myself, to erase the sound of my raised voice when I 'insisted'. This day will haunt me. It haunts me already.

Tomorrow after work I will go home. I will enjoy dinner with my husband, our daughter and our grandchildren. Tomorrow night I will enjoy the evening at home, go to bed in my bed and start the next day in my home surrounded by my family and the comfort of the familiarity of that and move one day closer to our daughter's wedding. Tomorrow my mother will move one day closer to leaving her home. Her home of more than forty years. The home I forced her to leave today.

When my mother got into bed tonight she thanked me. Thanked me for helping her. After the way I acted toward her today, she thanked me. Eventually I will understand that it is the disease I am angry at, that it is the dementia that makes me weary and angry and sad and so very lonely. But I am not at that point yet. I am a day closer to it, but I am not there yet.


Our family has grown! My sister and brother-in-law welcomed their second daughter-in-law and our extended family has grown not just by one, but by many. And if the wedding and reception are any indication, there will be years of events in which we, a large collective we, will share the joys and sorrows of family life together. This weekend was not about sorrow but about joy. Joy at watching Joel and Kelley as they prepared for their wedding. Joy at performing the last minute errands and tasks that contributed to a magnificent wedding. Joy at watching the clock as Saturday morning became Saturday afternoon and finally Saturday evening. Even joy at the failure of the white runner in the church to unroll smoothly in preparation for Kelley's bridal footsteps to Joel (the Best Man and Groomsmen did get it unrolled, much to the delight of the congregation!).

My sister is blessed to be part of a large family. A large vibrant family who share their love for each other loudly, publicly in a 'hearts on their sleeves lookout world here we come' kind of way. They are exuberant, excited and carry a sense of family that is palpable and extends through the generations and last night they embraced Kelley and Joel with that enthusiasm and it filled the room (and the dance floor!) and there was joy. Joy on their faces, joy in their dancing and joy in their being together.

We are blessed that there is room for my mother in this family. Room for her particularly now, when it would be easier to not make room. Room for my sister's mother-in-law and father-in-law to share their pre-wedding time with her, not because they had to but because they chose to. Time for my sister's nephew to escort "Grammy Lois" down the aisle. Time for my sister's brother-in-law to stand and talk with her as she paused to catch her breath from the long walk from one end of the church to the other. Time for my sister's sister-in-law to walk with my mother when she needed to stretch her legs at the reception. Time for my mother.

On the dance floor my body moved in rhythm to the music as my eyes surveyed the ballroom in search of my daughters (were they having fun? did they need me?...they were...they did not) and then my mother (was she having fun? did she need me?...she was...she did not). I relaxed into my husband's arms and let him lead me in the dance, let him hold me up as he has done on so many occasions, and let myself enjoy those moments, those rare precious moments of peace, moments where I could be his and only his because my daughters were in the company of their cousins and my mother, in her dusty rose gown with the sheer sleeves sat in the arms (literally) of my sister's family. My brother-in-law's tuxedo jacket over her shoulders, his brother-in-law's arm over the back of her chair and a smile on her face as she joined the celebration of her grandson's wedding.

At the end of the night my husband escorted my mother out of the ballroom and in his gentleness with her, his arm around her, her hand in his, I saw another aspect of joy, a quieter, softer joy. This joy contrasted with the joy we shared with Joel and Kelley, the joy of new love, a new life begun together. This joy spoke of family, of commitment, of 'for better or for worse'. This joy spoke of the ability of family to cope. To bear not just the joys but also the sorrows of our lives and to bear them together. I struggled to feel this joy again a few moments later when he walked into our house alone. Alone because it is the weekend and even though the wedding consumed our hours, when it was finished, when Joel and Kelley were husband and wife and heading to their honeymoon, I was headed to my mother's house and my husband was headed to ours.

My sister and I are blessed. Through joy and sorrow, happiness and weariness we are blessed. It is easy to love when the challenges are few or small. But to know love, to see it and feel it in your soul when the challenges grow, in number and in size, that is something else. Something that not everyone is fortunate enough to have. But we do and we call it joy.

Monday, September 29, 2008


This weekend, just when I thought I was familiar with all the faces of dementia, I was introduced to another one. Isolation. Over the course of the last few days at my mother's house I saw into the length of her days, the drawn out periods of time with nothing but time to fill the space. I don't want to imply by any means that her friends and our family have not been supportive, they have. They visit her, they call her, they love her and I am grateful for their love of her and support of us. My daughter and granddaughter spent most of Sunday with us, filling the house with two year old activity and laughter. Her attention to her great-grandmother able to break through the barriers of dementia with no effort.

This isolation I saw is different, it is present whether others are with her or not, it has crept into her and pulled her away from the world she lived in, the world she connected with, the world she loved. Her new world is internal. It holds her old memories, having stolen her more recent ones. Her memories of her childhood, her young adult years and her marriage to my father. These memories, which are more vivid and reliable than her surroundings, keep her company in her isolation.

My attempts to pull her from this world for simple conversation or even to watch a movie were only minimally succesful. I gave up after a few attempts. The struggle too painful for her, for me. As a result my weekend was one of isolation as well. Not something I'm accustomed to.

Hurricane Kyle was supposed to arrive in Maine this weekend. It changed course and we were left with rain, steady and persistent. It reflected our weekend.

Saturday, September 27, 2008

Grampy Past and Present

My sister found a note in one of our mother's photo albums. There, on yellowed notebook paper in perfect six-year-old script is my daughter's love for her grandfather. Her wish for him to get better after his 'hardatack' (he didn't) and her countdown to Christmas (27 days). To hold her love from 1983 in my hand last night, to relive the child she was and the love she had for her grandfather allowed me an opportunity to see that love transcends the generations and remains alive.

Michelle's excitement whenever her grandfather arrived, her leaps into his lap, the shadow she became as she wound her way around his long legs, her insistence that he sit with her, that he was hers and the rest of us could fend for ourselves had faded for me. This note brought that back. What a lovely gift to receive, not just the memory but the ability to open my eyes and see history repeat itself with our grandchildren. To see the adoration in their eyes as they cling to their grandfather, to me.

When Michelle walks down the aisle of our church (in 29 days!), the same aisle I walked down, the same aisle my sister walked down and the same aisle my mother walked down, there will be a candle on the altar. In the flame of that candle will burn the memory of those we loved. No, not loved, love. Those we love who, even in their absence, remain with us.

Friday, September 26, 2008


Tonight the Presidential candidates debate. As I sit on my mother's couch and their words spill from the tv and fill the living room I am aware that I should care. I should listen attentively to their opinions, watch their body language as they speak, evaluate their opinions on the economy, energy, Iraq and all the issues that plague our world. But tonight the only words I care about are my mother's. Words she spoke to my sister last night, words that let me know she is getting ready. She is preparing to leave us.

I balance those words with my inability, no not inability, my unwillingness to leave the hospital early today when she needed me. She needed me and I could have gone to her, I would not have lost my job, in fact I didn't accomplish much after I knew she was alone. Alone and waiting. Waiting for me to help her. Because she wasn't hurt, she hadn't fallen, there was no real emergency I chose not to go to her. She was safe. I was selfish.

I should care about the debate and on some level I do, I am concerned about our future. But tonight it is my mother's future that consumes me and as I help her into bed, look into her eyes I see what I fear the most. I see that she knows. She knows on a deeper level than I can imagine that her future holds more time like today, time when she will need help, when she will have to rely on others even more than she does now. With all she has forgotten, I hope she'll forget that when she needed me today I wasn't here.

Wednesday, September 24, 2008

It's The Little Things

My husband is home on Wednesdays, it took months for me to convince him to give up his mid-week tractor-trailer route but I don't think he regrets it. That extra day in his schedule, the extra day of rest is worth a bit less money. I can't hide my envy, my jealousy as I struggle to get to the hospital on time and he pours another cup of coffee and wishes me a good day.

On his day off today he went to see my mother. By himself. Just to check on her. The man I've been married to for 34 years, this man who to this day when we are with my mother does not call her by name, simply looks at her and talks, went to check on her because he knew she was alone and that worried him. So he went to see her.

It's such a small thing, a visit. Time taken out of a day to be with someone. Say hello, how are you, share small talk. That's what my mother does now, small talk. When he arrived she was on the couch reading, so he stayed for a little while, gave her a few miniature candy bars from the cupboard then went home. No big deal, he told me.

She's still talking about it tonight, this 'no big deal'. This unexpected visit from her son-in-law in the middle of the day. His day. His day to spend however he wanted to spend it and he chose her. Chose her with candy (the fact that the candy was hers to begin with is irrelevant!).

While he was with her I was at a celebration. A celebration of patients who have overcome obstacles and won. Patients, people who fought to walk, to talk, to live. People who struggled. What they talked about was not how great it felt to win, to beat the odds, but how important the little things were and are. How they didn't do it alone. Couldn't sustain it alone still.

There weren't many dry eyes around the tables of that celebration today. Tears of joy, of thanks, tears of sympathy and even those of victory. For me, tonight, when my tears come, and they will, they will be a mix of all those things, all those emotions, but mostly they will be shed in thanks. Thanks for all the little things, the small things that might seem like no big deal, but in truth are everything.

Monday, September 22, 2008

Halloween Rabbit

One thing my sister and I are known for is laughter. We have a sense of humor that rivals many. Our mother told us once during a shopping trip that she never worried about being separated from us in a large store because all she had to do was wait a minute and our laughter would direct her to us. We come by our humor rightly, our parents raised us on theirs. Dry, spontaneous and quick with a comeback our father could crack the veneer of any serious occasion, and often did. Mom's humor, a bit more reserved, appears now at the most unexpected times, like when the paramedics asked if she knew who the President was (her answer a safe one..."Why? Don't you?" quickly followed by "He's in trouble!") or after looking at my new necklace, handmade in Africa..."you could probably send it back".

While there is still the spark of humor in her it has faded and she jokes with us less and less. I miss that. Conversations between my sister and I and even the family in general carry less laughter these days and of all the things I miss, our laughter is at the top of the list. Which brings me to my point today, the point of a ridiculous thought that brought with it laughter, rich strong 'church giggle' laughter.

Like her father before her, my mother loves sweets. Cookies, cake, pie, candy, the form irrelevant, she loves it all and we often find candy wrappers in the pockets of her sweater, jacket or slacks. Sweets bring her pleasure so we bring her sweets.

I bought a bag of candy corn, those syrupy sweet yellow, orange and white triangles that herald the arrival of fall and, I must confess, tempt me beyond reason. We ate them throughout the evening last night, passed the candy dish between us. (When I helped her to bed and returned to the dish I was embarrassed to see how little was left and pledged abstinence for myself for the next week to make up for the amount of sugar I ate in one sitting.)

The lights turned out I climbed the stairs to my old room with its small bed and noticed a piece of candy corn on the stairway landing. Thinking of the nightly toy pick up at our house I scooped it up and continued my climb. A few stairs up and another piece of candy, more stairs, more candy. Much like Hansel and Gretel I picked my way along the candy path to my mother's room where the last piece of candy rested on the threshold.

As I threw the candy in the wastebasket I couldn't help but smile, which led me to giggles, which led me to laughter. All by myself, in my little bed in my mother's house I held my sides and pictured the candy trail, the trail that led me to my mother's room. Blazing that trail I pictured a bunny in full Halloween regalia leaving candy corn droppings in his wake.

In the light of day this morning the Halloween Bunny wasn't as comical as it was the night before, but my memory of laughing about it, of the pure joy of the humor and the trail of those candy pieces surfaced throughout the day and made me aware of how fortunate we were and are to have the ability to laugh, the ability to still find humor. Even though we may have to dig deeper for it, we still seek it out and take comfort in it when it is found. I know we will laugh again, share those moments together when our mouths open and joy spills out, spills out and rises above us, carries through the air and helps our mother find us.

Sunday, September 21, 2008

Window With A View

My view this weekend was not from my mother's house but from the windows and decks of the Haystack Mountain School of Crafts where writers from across the state and beyond gathered for a weekend of workshops, seminars and readings. We gathered in the rooms of this artist's retreat and shared our work. On this weekend, this weekend of words and stories, a common thread emerged. The thread of mothers and daughters. Not just mothers and daughters, but the pain daughters live with when their mother's leave, regardless of how they leave or where they go.

This relationship, this intertwining of lives that mothers and daughters share runs deep among us, molds us, shapes us into the women we are and the women we will become. We open our mouths and our mother's words flow out, we look in the mirror and are surprised when our mother looks back at us, then turn to our daughters and hope they hold some understanding of the amazing people they are. Hope we have given enough to them so they will carry it forward, to their daughters as our mothers carried it to us.

I shared my story this weekend, my story of pain and loss, my story of the darkness of dementia, the fear my sister and I share with each other and with our daughters. I shared my story with writers who live their own version of this life, this loss and in the sharing of it lived once again with guilt and shame. Neither directed at my mother, both directed at me. At me and my relief of this weekend, this weekend 'off', this weekend away from my mother's house, her photo albums and her words, the limited vocabulary that is hers now. The vocabulary that shrinks each day, word by word, letter by letter.

From the windows that open on Deer Isle, the windows that open to the sea and salt air, the view is breathtaking. From the window that opens into me, opens to the guilt and shame, the view isn't so great.

Wednesday, September 17, 2008


Today it is easy for me to see my time with my mother as a gift. Today, this day when it is my sister's turn to interrupt her life. This day when I have returned from a day surrounded by people from my hospital, nurses, physicians, therapists, social workers and others with their only connection to us the fact that we cared for someone they love, surrounded by them and engaged in earnest discussion of clinical ethical issues we face every day and how we can make it better, work harder to help support our patients, our staff and each other. This day of retreat from the hospital itself to the shore of Sebago Lake at a lodge with gardens and views and food that was a gift in itself. This day her gift is easy to see.

Her gift to me is time. Time to slow my pace, time to remove myself from the frenetic pace and responsibilities that have become my life and sit with her as she recounts her time, her pace, her life. It is easy to see this gift on this day.

I see her gift and I am grateful for it, today. My challenge now is to keep her gift in sight when I am there, when it is my turn again to pack my bag, leave my home and family and sit at her house and hear the same stories, look at the same pictures and want to go home.

Tuesday, September 16, 2008


I see joy in things, small blessings that appear throughout the day and I am strengthened. At the hospital, the world I live in and have lived in for most of my career it is sometimes difficult to see the joy amid the sadness, the pain and suffering of our patients, the agony of their families and the passion and commitment of the staff who care for them all. I have been on both sides and am thankful that today, this day, our health is strong. Today we do not suffer.

My joys come in all shapes, sizes, colors, sound and time. From the obvious, my grandchildren as they tumble out the door of their bedroom into my arms, to the less obvious, morning air my husband and I call "Idaho mornings", a morning with air so crisp and clean it begs to be touched, to be walked in, to be inhaled. Air we shared together on an Anniversary trip out west that we recall with joy. Memories that surface and let us relive the intensity of that journey.

There is joy in my days, though at times I have to search for it, move all the junk aside and purposely seek it. Sometimes I find it readily and on those days I hold it close and move through the work of the day, or night with a lighter burden. Other days it takes longer to find, maybe not find but recognize. I'm working on the recognition part.

I treasure these moments, moments when I recognize the beauty of my life, the good fortune I have, the family I have, the friends I have and realize that it has become easier for me to acknowledge what is meaningful, what I value, what I hold most dear. It could be my age, our 50s are supposed to bring us wisdom afterall, and maybe that's it, at least part of it. I think it has more to do with loss. With having something disappear, something I loved, something I still do love. Not something...someone. Little pockets of joy can brighten your whole day.

Sunday, September 14, 2008

But I Digress...

Today I am compelled to veer from my mother and family and look at another family, another generation with problems beyond the scope of my understanding. Problems that result not from their own doing but from this family's physical presence in a land beseiged by violence. A land where political unrest, religion and hatred have caused their world to explode, figuratively and literally. And in the midst of it a child pays the price.

The lead story in the Maine Sunday Telegram today tells the tale of this child and how a sniper's bullet shattered her skull and left such damage that after multiple surgeries in Iraq she was left with a dangerously unprotected brain. A situation that could end her life with a bump to the head.

This little girl now rests in our hospital, my hospital, under the expert care of two of the finest surgeons in Maine. Knowing their work as I do I suggest that they stand out farther than just Maine in their expertise, skill and dedication to their patients. And for the hospital itself, the donation of time, services and compassion are unsurpassed.

With that being said, as the Director of a mission team and participant for many years in medical mission work I have to question the long lasting results of bringing patients from other areas of the world to our hospitals for treatment. How much better is it to bring our services to them? To bring our skills, our equipment, our physicians and nurses and therapists to their hospitals to teach. To train the doctors and nurses there to care for their people and let them train the next generation of health care workers how to replace the missing piece of a child's skull, how to surgically repair a hole between the chambers of a heart (a relatively common birth defect), how to repair the damage of birth, accident or war.

While I commend my hospital and its physicians for the work they are doing, the restoring of this child, I grieve for the others who will not have access to the privilege of health care. Those who will rely on the hospitals, physicians and nurses of their country who may not have access to the education that will allow them to provide this level of care. I grieve for the doctors and nurses who know the skills exist but are at a loss to attain them through accident of where they exist in the world, the political walls that prevent education.

I look at the pictures in the paper today and while I celebrate the success of this child, of this family and their eventual reunion I can't help but feel overwhleming sadness at the missed opportunity for even greater successes if our physicians had traveled to an area in the world where they could have shared their knowledge and skill with others in their profession. Shared through teaching many who could then teach many more who could then teach many more and on and on, in exponential growth. Think then of the numbers of children and adults who would be saved. Give someone a fish and they eat for a day. Teach someone to fish and they eat for a lifetime.

Saturday, September 13, 2008

Picture Albums

The farther my mother slips into the past, the more I look into the future and while I long for a return to my normal life with my husband I know that when that happens she will no longer live in her home. Her home of more than 40 years. The home she shared with my father. The one place she is comfortable in now that her world has become fragile, unreliable. My loyalties are divided and as much as my husband is understanding of the need for me to be away from him and from our home, we miss each other. We miss our life, much like my mother must miss hers.

Today she focused on her photographs. I marvel at the fact that she has almost all of her pictures in albums. Hundreds of them in dozens of albums. It doesn't matter that you go from her childhood to my grandchildren with the flip of a page, at least they are in albums. I never know which picture will capture her attention, Walter spiking the punch at an Anniversary party ("and he didn't drink"), Barbara and Thelma at the piano ("something was funny") or her parents ("wasn't my father handsome?"). Today it was my son ("wasn't he cute?"). I cannot look at the picture again. His smile reaching out from the page, a smile I haven't seen in a while now, now that he's chosen to to live his life without us. Chosen to separate from us. Her gift to me is that she doesn't ask where he is, how he is, why he is not here when all her other grandchildren and great grandchildren share her days. Somehow, on some level she must know not to ask, not to touch that pain. I don't know what I would say if she did ask, how to explain to her what I don't understand myself.

Today is filled with my attempts to hold on to people and times that are unable to be held. People move in their lives, at their own pace. A pace I am out of step with, either just ahead or just behind. A look forward, I lose. A look back, I've lost. If I had time I would simply stop looking and find my own pace, my own timing. But I don't have time, not today. Today I have my mother's time and with that time we look to the past, a past that is filled with people and places and events and joy and tears and love. It could be alot worse.

Friday, September 12, 2008

Tears of Strength

I cried today. Not that there is anything wrong with that, there is nothing to be ashamed of in crying, to allow pain to flow in liquid form, give it substance. Crying is underrated. However, when it occurs in the office of your boss it causes a bit of 'loss of face'. Or could, unless you work with people who understand, people who care, people who know there is more to you than your job title or your responsibilities. Today I got a sympathetic ear and a hug along with the acknowledgement that everyone has something. Something that lives with them, something we put aside while we work, work to solve the problems of others, others with difficulties beyond ours.

It occurs to me that through this blog, through this internet 'outing' of my story, I inadvertently exposed my family to the public, left the windowshades up in our living room so everyone can look in and watch our life without our knowledge, without permission. But I granted permission, without consent of my mother or my family I granted permission for the world to watch us lose her. I'm not sure how I feel about that. Selfish? Probably. My mother knows nothing of my public exposure of her. Is this yet another betrayal?

While I wonder how many more ways I will find to betray my mother I read your posts, your e-mails, listen to your voice mails (I've saved several and listen to them over and over) and remind myself that what you say isn't how sorry you feel for us, what a shame it is that this has happened to my mother, our family, but what it was like when it happened to you, what scares you as you look into your future and see yourselves walking the path we now walk. You talk to me of comfort, of the burden shared, of the relief that the emotions, the fears and worries you feel are common among those who take this journey. What I hear from you is "don't stop".

I did not intend to lead the way. This is not a sojourn I volunteered for and would shed it immediately if given the choice. I don't particularly admire the way I handle things or relish the thought of more to come, the thought that it will get worse, that we will lose even more of our mother before we come to the end of this. Those thoughts are too big a burden, too much to hold through the busy days of work faced with the problems of health care in crisis or in these quiet hours of the weekends at my mother's house. But while I did not choose this, it is mine. Mine to handle, to hold. I have no choice. The sheer magnitude of that thought alone both bolsters and weakens me. Raises me up and brings me to my knees.

And so we walk this together. My family now, others before us, more to follow. We hope and we pray and we lean on each other and learn from each other. We hold fast to the memories we have knowing they may be soon lost or like others, long held. But either way we walk together with strength and dignity, humor and compassion and along the way shed a multitude of tears that sometimes cling to our throats, sometimes flow freely in the quiet of the night or worse yet, appear at inopportune moments. Regardless of when they surface, my tears will continue, will fall when the need is there, when the loss becomes too large. In that way I will honor my mother not betray her.

Wednesday, September 10, 2008

And the Winner Is...

I walked with my mother and sister today. They were with me at my desk in my office, through the halls of the hospital, in the meetings, phone calls and e-mails. They walked beside me, every step of a busy day that was faced with all the difficulties of our heath care system, the stresses of too many patients, too much illness and too many sad stories. They were with me for the successes, the thanks of a Charge Nurse for understanding and letting her vent, the warm welcome of a colleague not seen since Spring, the excitement of the upcoming move into a new building where new life will be delivered and the smallest will be saved. They shared my day.

They held me up when I thought the final straw, a call to the President's Office, would break my day, they chuckled with me at the joke a staff member emailed because she thought I could use the laugh and they hugged my secretary when she sent pictures of her son's climb in the Tetons. They shared my tears as my sister told me on the phone of her conversation with Mom last night, a conversation that ended with Mom understanding that she could not live alone any longer. An understanding that may be transient, but on some level sits on my mother's soul, an understanding that sits heavy on our hearts, heavy enough to break them.

They listened in the hospital cafeteria when the cashier couldn't remember who co-starred with Gene Kelly in the movie Singing In the Rain. They shook their heads at the guesses: Judy Garland, Julie Andrews, Doris Day, and agreed with me that even though I didn't know the answer, I knew those were wrong. My mother grew up with the movies. She and her friends went to the theater every week and pined for the greats, Nelson Eddy, Betty Davis, Clark Gable. Penny and I joked that our husbands would have to pass a Gone With the Wind trivia test before we would be allowed to marry them. My father agreed to name me Bonnie but drew the line at Bonnie Blue. (Thanks, Dad!) Melanie was choice number two. I was almost a teenager before I watched the movie and discovered I was named for a spoiled child who died at the age of four. Probably a good choice, I'm no Melanie.

And so they walked with me then, up to my office, and held my hand as I dialed Mom's number and asked the question so I could put my mind at ease. Solve one problem that was simple. One problem that didn't involve the technicalities of health care or the hospital or the complexity of meeting the needs of critically ill patients while balancing the business side of the work we do. One that involved nothing more than the name of an actress.

I think it was only my sister's hand I felt in mine after I hung up the phone and googled Singing In the was Debbie Reynolds.

Tuesday, September 9, 2008


Tonight it is my sister's turn to pack her bag, leave her husband and home and climb into my old bed at our mother's house. Tonight she will hear the same stories (verbatim), be shown the photos in the album (again) and eventually help Mom up the stairs, those stairs that get steeper every day. Tonight I enjoy the luxury of my own home with my family and new conversation. My sister carries my burdens for me, tonight I carry hers.

We celebrate a milestone in our family. Our grandson Brandon has turned six and so we celebrate in the usual cake and ice cream way with our off key voices raised to him and his baby sister mesmerized by the candles. We celebrate with pizza for supper, his half eaten on his plate so he can sit near his presents, ready, anxious. We take our celebration to my mother's house, to her dining room with the butterflies on the wallpaper, the plates with the names and pictures in bright colors, all places of our father's journeys, business trips where he thought of us, of her and brought her these china memories.

With less than three weeks to their wedding Joel and Kelley come to share Brandon's time, to be part of his day. They stand with us and sing and as I watch my nephew he becomes the six year old with Osh Kosh overalls and matchbox cars in his pockets. The memory visceral. We tell Kelley the story of another birthday, a birthday with a Dukes of Hazard cake on this table. Her soon to be cousin Lacey initiates her into the family ice cream scooping debate and Lacey's son and daughter watch her, watch us and learn more about who we are, who they are and where it all fits.

And through it all there is music, not the radio, not an album from the collection stored in the 'hi-fi', but real music from the piano, a player piano that requires a player to pump the pedals that scroll the music that moves the keys. The kids dance, I sing the words that are printed along the scroll and Mom's feet tap without hesitation to the notes. I look at the pictures that rest on top of the upright and there is our father, at the piano with us.

Tonight it is my sister's turn for the memories of our family to swirl through the house for her. Her turn to hear the echoes of our childhood and allow them to lull her to sleep. Her turn to be surrounded by the silence that will come after the presents are opened, after the candles are blown out, after the ice cream has melted into the frosting. Hopefully, with the echoes stirred the silence won't be as strong and she will sleep.

Monday, September 8, 2008

The Sound of Silence

I talked with some friends at work today, women friends, strong women. Women who are in similar situations with their mothers or have been there with other family members. I wanted to tell them how it felt when my mother said, "Thank you" when I got her into bed last night. How it got worse, the shame. But I couldn't manage to speak the words out loud so I hid them and struggled with them all day as they tried to force their way to the surface. They finally found their escape and rushed into the comfort of my sister's voice on the phone. She carries my burdens for me.

But we have good news today. There should be an opening in Assisted Living within a month. Maybe sooner. Maybe before the weddings. Maybe between them. The translation of that is that another family will soon suffer the agony of moving their loved one to the next level of care, a Nursing Home or maybe heaven? How do we put that aside and think of ourselves and our desire to return to 'normal'? Is there normal once dementia arrives?

One of my staff members asked me today if I was tired, she said I looked tired. She quickly said she didn't mean to be uncomplimentary seeing as I'm the boss, but she doesn't usually see me look tired like this. I smiled (only a smile, I was afraid if I laughed it would become maniacal and never stop) and told her yeah, I was a little tired.

So I am at home tonight, my husband sound asleep in our room, my grandchildren tucked into bed, my daughter downstairs on the phone and our house is quiet. Not like the quiet of my mother's house, this quiet is a content quiet, a quiet that predicts the preparation for the next day at work, at school, at daycare. The quiet at my mother's house is there because the sound has been stolen. I am terrified of silence.

Sunday, September 7, 2008


Rarely without a book in her hand or a smile on her face, my mother has faced her life with grace and dignity. While others rage against what life offers, my mother has accepted it all with thanks and joy. We could use more people like her in the world.

What's Normal?

As a trained professional I know there is no fundamental reason to argue with a person who has dementia. I would never dream of such behavior with a patient and would assuredly advise the families of my patients to understand the nature of dementia, remain calm and pleasant and simply go along with whatever the conversation happens to be. Knowing that, why is it that tonight I find myself insistent with my mother that her father's last wife was Betty, not Gladys?! What difference does it make? They're all dead now so who cares which one came first (there were six in all, a fact my mother inserts into random conversations with complete strangers.) What is it that makes me push against her tonight, to prove her wrong, to state in no uncertain terms that we were not there when Martin died, we were there a few weeks before? Again I ask (a few seconds too late) what difference does it make to anyone, particularly when in this instant, this memory is so important to her. She needs to believe she was there and it was at the hour of his death that he told her, "I love you and I'll miss you". What harm is there in letting her believe that when one of her dearest friends died, she was by his side? How much better for her to end her day today with the comfort of knowing that she was a good friend to someone. I took that away from her.

So tonight I have made my mother feel bad. I have forced her to come face to face with her dementia, and it is ugly. I can't think of anything worse I could do in the course of a day. I am willing to bet I am not alone, that there are many daughters and sons out there who have done the same and are as ashamed of their behavior as I am. In this instance, there is no safety in numbers, no assurance that if all these other people have done the same thing it can't be that bad, it must be expected. I am willing to bet the literature labels it a 'normal stress response'. Trust me, there is nothing normal about it.

Sheer Sleeves

My kids are horrified that I have a blog. "Don't use my name!" their first response. These are the same kids (women if truth be told) who encourage me not to act old, to be up to date with the world, with technology. Now they fear my ability to utilize technical tools will translate into embarassment for them. Oh, the power of my laptop! (Relax girls, as much as I love you, it isn't always about you!)

In October my sister and I will each gain a family member. For her, a daughter-in-law, for me a son-in-law. These weddings come with all the joy and fanfare befitting the expansion of our family. For Penny the addition of Kelley a joyous occasion, for us the welcome of Jay no less joyous but truly a technicality because he long ago became one of our own. Regardless of who is joining which segment of our family, both events are formal affairs with all the trimmings. Trimmings that require details and errands and follow ups and appointments and last minute work. What can not wait until the last minute is a new dress for our mother, so today we shopped.

We knew we were in trouble as soon as we walked into the store and she said she had to sit down. A chair near the dressing room came in handy...handy for her as my sister and I walked back and forth with dress selections. A selection made it was into the dressing room, again no easy task but once accomplished I led our mother out to my sister. In the mirror I saw my mother, not as she is now, but as she was. Whole. Beautiful. Draped in dusty rose chiffon that encircled her waist and streamed to the floor. My sister saw her, too and we swallowed the lumps in our throats together as we faced all that we have lost.

My sister stood behind our mother, looked in the mirror at her and reminded her that she always used to say that one day she wanted a dress that had long sheer sleeves. "I did?" She faded from us again as she moved back to the chair in her new dress.

These are the moments when the world collapses for me, the moments when there is no escape from the reality of the disease, the course of our path that steals her from us. We have watched others travel this journey, some with grace, others with anger, and try to find our way. We rely on the love and friendship of our families, our husbands and children, our in-laws and lifetime friends and can't imagine how anyone lives this without faith. We cherish the moments we have her with us, the moments like the one today when we saw her in the mirror and steal ourselves against the knowledge that these moments have become fewer and will become fewer still.

But in October Grammy Lois will have her moment in her new dress with the sheer sleeves and she will walk down the aisle at the weddings of her grandchildren and everyone will know that our family is there, sustained by our love for each other and our love for her and we will welcome our new family members with open arms and create new memories together.

Saturday, September 6, 2008

If A Tree Falls....

I wake in the memory of my childhood, surrounded by the walls that house the echoes of my past. My mother's house is quiet this morning as it is every morning, the sounds of our former life here lost in the walls and ceilings of the rooms just as her memory of much of that life is lost to her. My feet reach the footboard of the bed, the same one I slept in as a child, the one that held me while I grew, and grew, and grew, a process I thought would never end. It did, but not until the mark on the doorframe was just shy of six feet.

My sister and I share this bed now. Not on the same nights, but it is shared space. Our space, sacred space that we sleep in with one ear open, one ear trained on our mother's room just as we did when our children were babies. An ear that will wake us to sound, any sound. A cough, a moan, our name. The sound we fear the most, the sound of her falling. We have not heard that sound but we know it exists.

If there is an up side to this disease, this silent erosion of a person, the erasure of our mother, it is that unpleasant events are soon forgotten. The five hours on the hardwood floor of her bedroom, the fall the next day that blackened her eyes, her face, her arms, her hips. The month of July spent in the hospital, Rehab and then the Nursing Home. The fall that brought us, my sister and I, back to this house, to my old room, this twin bed.

We are back but we are not alone. Much of the village that raised us, our children and now our granchildren still stands with us as we walk together. Walk as other families walk, slowly, gently toward the quiet. The quiet that steals from us. The quiet that removes one word at a time from our mother. The quiet we are helpless against.

It is quiet in my mother's house this morning. Quiet that contrasts sharply with the sounds of my house, my husband awake long before the rest of us, our grandson gliding into his mornings with sweet smiles and a gentle voice, our granddaughter slamming into hers with her mother's dread of morning clearly embedded in her genes and our daughter following them down the stairs, eyes almost open as she referees the start of the day.

If I relish this quiet, take time and wrap myself into it, is it a betrayal? Have I become the enemy's consort? Have I sided with the thief who steals my mother from us? These are the thoughts the quiet allows to surface. Thoughts that remain hidden behind the noise of the day, the noise of life, the noise of the creation of memories.

Hurricane Hanna will arrive today. I hope she is loud.

Friday, September 5, 2008

The Filling in the Sandwich

I used to love watching my mother make sandwiches. She put just the right amount of peanut butter and jelly, egg salad or sandwich spread in the middle before the slices of bread pressed together and my lunch was ready. Before she placed it on the table she would cut it in half from the middle to one corner, turn the plate around and finish the job. Coming home from school for lunch brought me comfort, brought me sustenance, brought me my mother.

Memories like that are precious to me now. The more common the better. Somehow it is those simple moments, those times with my mother and father, my sister, our family friends, all those simple events that make up a life. Those memories we worked so hard to create and to hold onto. Those memories now live with me but elude my mother. They have escaped her grasp and vanished into the depths of dementia. Daily I am aware of another piece of my past, another piece of my family that has disappeared and I grieve for the parts of my family that no longer exist.

At the other end of the day I work to create memories with my grandchildren, these most amazing children who live with us and enthrall me with their simple presence, their mere existence causes me to marvel at the wonders of the world, the universe, the miracle of their lives.

I live the sandwich. I am the peanut butter and jelly, the egg salad and sandwich spread. My mother is one slice of bread and my children and granchildren are the other. My husband rests somewhere in between, with me.