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.