Routine

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.

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!

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.

Yesterday

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.

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.

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 Blessing....my 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.

Transitions

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.

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.

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.

Joy

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.