Coming to Terms

April 28, 2011

Placing my mother in a nursing home has become, at least initially, more draining than caring for her at home. In one week, she has gone from mildly confused to full-blown dementia. She is fearful of the small children running around her, the bugs on the wall, and the water splashing off of the roof – none of which exist. She calls us at night wanting us to come to her, fearful of being alone although she’s surrounded by other residents and staff. She tells my father that she’s going to jump out the window. He tells her it’s a four foot drop. Today is day ten of her stay.

We requested that her doctor be changed and the new doctor has seen her now. It seems that the pain meds that she is on could be causing the hallucinations and sudden fall into dementia. We are hopeful that she will improve. If not, she is where she needs to be.

My father asks me, “What did we do to deserve this?” It makes me angry, furious in fact. I ask him, “Did I do something wrong to deserve the life-changing challenges of raising Lauren? Did people who suffer with cancer do something wrong?” He is, no, they both are, so ungrateful for the life that they’ve had. They have not been rich or famous but they have been comfortable, healthy, and unchallenged by adversity. They have enjoyed thirty years of retirement. I am about to enter into a time of unprecedented freedom in my life. I will still be involved and responsible for Lauren’s life as she moves into her own home, but it will be in an “as needed” capacity instead of a 24/7 capacity. I feel that my parents expect me to take on the responsibility of dealing with the results of their poor planning and selfish assumption that they need not plan for their declining years. I have been so caught up with the crisis mode that my mother’s sudden decline sent me into, that it has taken me awhile to be able to clearly think about the situation. I will, of course, always be here for them, but the extent of that help will have limits. Just as they had their priorities, I must have mine.

I had a long drive to and from a meeting yesterday, lots of uninterrupted time to think. I was thinking about my own mortality and how to avoid the pitfalls with which my parents are now dealing. I won’t have a daughter to care for me as they do. I hope that I will always remain grateful for the life that I have had. I hope that I can always find a way to contribute to this world. I hope that when I die my loved ones will mourn my passing....not feel relief. I hope that I accept the declines of age with grace and humor.

Throughout the years of raising Lauren and now with the crisis that has arisen with my parents, humor is often the one thing that carries you through, gets you over the hurdles, preserves your sanity. Sometimes its hard to find the humor in things. Today, it was staring me in the face as soon as I walked into the nursing home. Poor Mom has been hallucinating about children running around her...and today is “Take Your Child to Work Day” at the nursing home. Children are all over the place.

A Sad Week

April 21, 2011

This week has been pure hell. I knew it was going to be bad. I just didn’t know it would be this bad. Mom went into the nursing home on Monday. She hates it. She’s upset. She’s angry. She’s sad. All those fears I’ve lived with for years about institutionalization, I now see happening to my mother. Information is not shared amongst staff. Physicians are uncaring and uninterested. Staff are smiling, spouting warm words of sympathy and understanding, yet quality of care is far below my expectations. I met with the director today. She was full of excuses for the facility and the physician. It didn’t take much effort to shoot those excuses full of holes.

We were required to read and sign over sixty-five pages of documents for my mother to enter this facility. In addition, unsolicited, I provided them with information about my mother presented in the same format as Lauren’s Plan of Care. No one, NO ONE, read it. Yet decisions were made about her care, her medications, and her abilities. Last night I drew up my own documents regarding Mom’s plan of care and medical decisions. I took them to the director today and asked that they be signed by the facility. I presented them to her with a lovely smile and watched hers disappear. “No one has ever done this before!” Gee, where’ve I heard that before? She did not agree to sign them, but Mom’s file got a major overhaul and now includes those documents. If the changes outlined in them do not occur in a timely manner, I will push to get them signed. Right now they’re just threatening reminders in that file.

Every day this week I’ve sat and watched my mother cry. Then I go home and do the same. But I don’t want my father to see how upset I am, so I sit in the bottom of my closet where I know he can’t hear me and sob. My mother is old; she doesn’t have many years left. They are not going to be happy ones. It is not in her nature to make the best out of this situation. I can rationalize that none of this is my fault and in many ways her own actions have resulted in this turn of events, but I still feel guilty.

My thoughts have been turning this week to all of those children over the years whose parents placed them in institutions. I’ve always tried to be sympathetic and nonjudgmental, but this experience is making that harder. I would do just about anything to have prevented my mother from going into long-term care. My brother and I pleaded with my parents for years to make changes in their lives that would have allowed us to help with the declines that their aging would eventually present, but they always refused. So, we found ourselves without choices. I know the lack of services, educational opportunities, and general ignorance motivated families to place their children with developmental disabilities into institutional settings. I just can’t conceive of anything short of uncontrollable violence that would have made that choice acceptable to me.

So, even though I am terribly sad this week, I also feel blessed. If not for self-direction, eventually, I would have been forced by my own aging to place Lauren in some form of institutional setting. I fear not being there to oversee her self-direction for the rest of her life, but, at least, I have the hope that her life will not be controlled by the vagaries and inadequacies of a living situation controlled by strangers. Rather, I pray it will continue to be designed around her specific needs and desires, for as long as possible, by people who love and care for her.

Change and Promise

April 12, 2011

The grass is green. Such a simple sentence, but after a winter like the one we just had, a glorious one. Warm temperatures yesterday and a gentle rain overnight had me awakening to an almost startling change in the view outside my window today. Green grass, green fields set off by the red of tight buds forming on tree branches and bushes. Soon, they too will open to reveal leaves of green. Change and promise – the theme for spring, the theme for my life this spring.

My mother will be entering a health care facility on Monday. Lauren’s home is back on track and should be ready by June 1. When both are settled in their respective new homes, their lives and my life will be drastically different. It is hard to imagine what the future will look like. I want to anticipate the months to come eagerly, with joy …and relief. I find it hard, though, to allow myself to get too excited, to hold on to the promise. I’m worried about the other changes to come in all of our lives. Our federal and state governments are trying to deal with a bad economy and an ever-growing need for health and social services. They are trying to pass laws and change policies that will adversely affect the poor, disabled, and elderly. They are making changes to Medicare, Medicaid, and state services. What will this mean in my mother’s life, in Lauren’s, in mine? I wish I could let myself look to change as positive, promising. I wish I could embrace it. I hope that someday the poor, elderly and disabled can look to change with optimism instead of fear.


April 9, 2011

There were nine people in my kitchen this morning at 8:30 am. After a night of little sleep (Lauren’s been having problems sleeping lately), that was way more than my brain could handle. Besides George and I, there were my parents, my visiting stepdaughter and her husband, Lauren, caregiver N, and a home health aide there to help with my mother. Chaos.

There has been a bit of progress regarding my mother’s care. I am completing the paperwork for my mother to enter a skilled nursing facility. At this age, the questions preceding care seem to be more about financial matters than medical and social needs. Prying the details of their financial circumstances from my very private father has not been easy. I think that I have all of the information that I need now. I still struggle, though, to come to terms with my long battle to keep Lauren out of an institutional setting and my advocacy of the last few weeks to get my mother into an institutional setting.

A few days ago, the unenviable job of telling my mother that she would be going into this facility fell to me. I was advised to lie. Since I didn’t have any better idea as to how to kindly tell my mother that she had come to this stage of her life – I followed the advice I had been given. I told her that the doctor wanted her to get some rehab, and that we had found this very nice place to make that happen. She took the news rather well, better than I expected. She was more worried about how my father was going to react or handle being alone after sixty-five years of marriage. She later said to my father that she would probably go in and never come out again. So, even though she often seems confused and disoriented, she, somehow, is very aware of her fate.

This move to a health care facility is the only option we have at this point. It is a very hard decision to make but in the long run, I think that I will have a better relationship with my mother if others are providing her primary care. I know I do not have the energy or patience left after so much of my life being devoted to Lauren’s care, to provide her with the care she currently needs. If her care is being well provided by others, I can focus on spending time with her as simply my mom. The facility we have selected is beautiful and modern, serving seniors of all levels of need. There are many activities and opportunities for stimulation and fun. I wonder though, with her seemingly weekly decline, if she will be able to enjoy any of the opportunities this facility offers. She has been isolated for much of the last year in her own home and now in mine. I have hopes that the easily accessible and varied activities now available to her will make the days or years she has left pleasant ones.

I’ve allowed myself to daydream a bit about the day, in the now not too distant future, when Mom is in a stable, caring new home, Dad is once again ensconced in their summer place, and Lauren has moved into her own home. Little shivers of anticipation make my heart beat a little faster. The idea of the freedom soon to come lurks around the corners of my brain like an ephemeral ghost going in and out of focus. I can’t quite grasp the reality of it. I think I’m afraid to let myself.

Mom Reflex

April 3, 2011

I drape an afghan over my mother’s shoulders as she sits on the deck in the early spring sunshine. A cool breeze still holds the wet chill of the snowflakes that had fallen only the day before. She sits in her wheelchair, her face as pale as the once auburn locks that have now turned white, and stares out at the soon-to-be green hills that she can no longer see. I bring out a chair and sit next to her, but find it hard to sit still as my mind wanders to the work waiting inside for me. Yet I stay, and listen to the junco in the lilac bush berating us for sitting too close to the bird feeder. Afraid to come near, she soon flies off. I think about an incident earlier in the day, and the mothering instinct that still remains strong in this woman next to me who, so frequently now, seems to be a mere shell of the woman she used to be.

I had just finished feeding Lauren her breakfast when Dad wheeled Mom to the table. She immediately asked how my foot was. Two nights before as I stumbled out of bed to make one of those increasingly frequent trips to the bathroom, I had landed wrong on my foot and heard a distinct “crunch”. Painful and swollen, I had ignored the foot as much as possible till the discomfort forced me to elevate and ice the wounded appendage. During the next night I had woken to realize that I couldn’t put any weight on my foot at all. When I updated Mom on my mini crisis during the night, she said, “Why didn’t you call me?”

Why didn’t you call me? I think about the difficulties that Mom is facing right now. She needs to hold tightly to my hands as I walk backwards in front of her. Crushing my fingers, she shuffles along, afraid to fall. As I prepare her for bed each night, I ease her tee off of her left arm first, pull it over her head, then gingerly guide it down from her right shoulder where bone grinds painfully against bone. At dinner each night, I put food on Mom’s fork before she raises it to her mouth. She can no longer tell when she’s cleaned her plate. She’s often too confused to verbalize her wants and loses track of the days and the hours. Yet, still, she wants to help me. She didn’t stop to think of what she could or couldn’t do. She just expected me to ask. Wanted me to ask. But “mom” has not been an active part of my life for years. This now tiny, frail woman is my mother, but she has not been able to be there for me physically or emotionally in a very long time. However, the reflex of a mother to reach out, to want to comfort remains. “Why didn’t you call me?” she asked. Lauren, noisily vying for my attention, spared me from responding to a question whose answer was so painfully obvious.

I decide that the work inside will wait. The junco returns. She trills a few sweet notes and then repeats them over and over as if inviting us to join along. My tuneless whistle does not meet her need for a duet and she leaves us. This time for good.