Another Birthday

Today could be Thanksgiving. I am grateful that my mother has celebrated her 86th birthday. It was not like any other birthday since she's now living in the nursing home, but it was still a good day for her. By the time I called her at 9:00 AM she had already been wished good things by many people; she had balloons tied to her walker; and she was totally aware of her age!

( something that doesn't always happen)

We brought her a special lunch, presents, a cake and her friend Stanley and ate in the family room upstairs--away from the usual craziness of meal time in the dining room. She truly beamed at all the attention and looked like a little kid when we sang "Happy Birthday" to her.

I am purposely writing this before I speak to her tonight, because I want to document good feeling about the day and I fear that in our nightly conversation on the phone it will be clear to me that she has no recollection of our visit. So, for the next 15 minutes I can revel in the knowledge that she had a good time and we celebrated another birthday with her. It may not seem like much, but I'll take it!

Thanksgiving--Then and Now

When the Pilgrims celebrated their first Thanksgiving in the new land they were probably grateful for surviving their first year and for the bounty on their table but also were mindful of the way things were before they had to make so many adjustments in their lives. Surely they were saddened by those they left behind and for the irrevocable changes that occurred during the last year.

So, I can relate to those emotions as we approach this holiday of Thanksgiving. I am grateful for the bounty that awaits me--the joys of sharing a holiday in the home of our engaged son and future daughter-in-law and deliciously prepared food and good times to be shared with those we love. But I am also mindful of the way we used to celebrate the holiday. Long ago we sat at my mother's table as she proudly produced a perfectly prepared turkey and all the trimmings. My father would carve the turkey and inevitably spill the wine. We propped little ones on phone books and talked about the plans we had for the year to come. More recently, it was I who was the hostess serving our own children (at varying stages of their lives, and often on brief vacation from being away at school) and our aging relatives spent a few days catching up with the family. I reveled in having everyone together for just one long weekend.

Now, I need to adjust to the new order. Mom and uncle can no longer make the trip to celebrate the holiday, one child and his family, as well as our youngest, the PhD candidate, are over 500 miles away and the family cannot spend the holiday as one this year. It is sad, but true-- nothing stays the same. There is guilt about enjoying a holiday while mom and uncle need to stay at the nursing home far from family on Thanksgiving Day. The simple things we take for granted one year no longer apply the next. My Thanksgiving is blessed by still having my mom and I am grateful for my loving family and good times yet to come. But, just as the Pilgrims did so long ago I must take stock of all that is good in my life while I also mourn the loss of the way things used to be.

The Restless Relatives

I just came home from visiting my mom and uncle--whew!! they were restless and ornery today.

My uncle couldn't stop itching (his usual wintertime dry skin problem that seems to defy medical marvels); his foot kept slipping off the foot piece of his wheelchair; and his food wasn't cut up fast enough my me!! My mother had a whole other list of problems-- she couldn't locate her socks that were buried in the drawer; the window in her room was letting in too much cold air ( it felt wonderful!, but that's just me); she was upset because I threw away too much of the food that was rotting in the bag she carries on her walker; and she was wearing a short sleeve shirt, complaining about the cold, but refused to hear the suggestion of changing to long sleeves.

Wow! I had so much fun that I need to probably drink a gallon of some alcoholic liquid or numb my jangled nerves by vegging in front of the TV for several hours. I really do feel the need to see them, and usually enjoy the connection that I get from those visits, HOWEVER, today was very different-- I was thrilled that one of their friends from the senior center came to visit so I could make a faster than usual exit. For once, I was also happy to have the long ride home so I could calm myself and decompress from the visit with the curmudgeons.

The Joy of an Upcoming Wedding

Our son is engaged! We are so, so happy with his upcoming marriage to a lovely girl who loves him and makes him happy. The joy of planning and anticipating a wedding for our child ( who is a grown man) is being clouded by the issue of dementia. Thankfully, our younger members of the family are fine cognitively, but the question of my 86 year old mother who does suffer from dementia attending the wedding is remaining unanswered.

The wedding is planned for September, 2011 which is a long time away from now. We have no way of knowing how Mom will be at that time. Some of the variables of her ability to attend are also complicated by the wedding's venue-- a 5 hour trip from the nursing home where she resides. She would need to travel for 5 hours, attend the ceremony and reception and then either return to the nursing home that night, or stay in the hotel overnight and return the next day. We would have to hire an aide to help her (and free me of these duties while trying to be the mother of the groom) and we would need to hire a driver for the trip home since we will be staying the weekend. As I write this, it sounds daunting for her and the event is nearly a year from now.

My dilemma is based on my wish/ prayer that she be included in as many family events as possible. She is still alive and can still recognize family members and enjoys their company. Do we have the right to deny her that privilege because it will be more difficult for us?! When do we stop taking the easier way out in our attempt to keep her on an even keel? What is our motivation? and whose needs are being served? How much of our preventing a meltdown from her is based on our own need to be unfettered at a fun event? Are we wrong in wanting things to go smoothly, or are we looking for excuses to keep her away because it means more work from other family members?

I don't have the answer and will not for several months. We are overjoyed by the upcoming event but the questions and the sadness they evoke blend with our elation while we pray for the wisdom to do the right thing.

How to Answer?

The question that was posed tonight was asked and answered hundreds of times before, yet it hasn't gotten any easier. Mom called and wanted to know why she should spend the end part of her life (her words, not mine) in a "cheesebox hotel room" instead of living with her family.

She never calls the nursing home what it is--she almost always refers to it as a hotel--I'm not sure whether she honestly believes she's on some perverse vacation, or whether her denial serves her in this way. I tried valiantly to sidestep the question but she kept asking and presenting a thoroughly thought out set of reasons for living with me and Larry.

1. She believes that she did everything right in her younger days and now it's time for people to help her out.

2. She thinks that she can help me with chores and cleaning, so it would make my life better.

3. There's no reason for her to stay in the hotel when she should be surrounded by family.

All of this sounds great for HER! It doesn't address the impossible changes that would happen to ME! I could never afford to hire people to stay with her, so I would need to stay home all the time or take her with me where ever I went. She would not comply with showering or taking meds the way the nursing home can manage it. Larry and I would never be able to visit our kids because we have nobody else to relieve us when we want to see them, or go on a vacation.

Now, all of this sounds terribly selfish, I also realize that I have no socially stimulating activities for her, so she would just sit in our house all day waiting for me to talk to her or take her somewhere. I cannot trust her to stay home alone, since her vision and forgetfulness pose numerous hazards--not the least of which, she could forget that the stove was on, as she did in her own apartment.

Her carefully thought out presentation to me is haunting. I pray that this one time, the dementia actually helps her forget our conversation, because I don't think I can explain the reasons to her without losing my mind. What you know intellectually, and what you feel emotionally are sometimes in conflict and there is no way to solve that.

The Tenderest Moment

As I visited my mom and uncle in the nursing home I was privileged to witness such a sweet moment between them. They are probably the most devoted brother and sister that I have ever seen, and have really spent most of their adult lives living closer and sharing more experiences than most siblings ever do.

First, my uncle was still in bed when we got to his room. My mom sweetly kissed his cheek and whispered how she wishes he'd feel so much better each day. He gently kissed her cheek and told her that he wishes every day that their old age lives could be different. Later, after lunch, he needed to wash his hands. She so tenderly moved his wheelchair to the sink and got the soap on his hands that I nearly cried, but felt like a voyeur watching them with this simple task. She helped him get the paper towels and made sure that his fingers (gnarled with arthritis) were dry. Amazingly, she commented that he dries his fingers (one at a time) just like their "Papa" always did--amazing, because she remembered something meaningful from their past!

Finally, she commented that their father was the most patient person she ever met.

This seemingly mundane snippet in the day was so tender and loving that even my mother's roommate's mother had tears in her eyes as she witnessed it. These small moments of humanity and love bring new meaning to the day.

The Unpleasant Surprise

Today I took Mom on "an adventure" as she called it. It really wasn't such an adventure, but rather, a trip to the local diner and then to the audiologist for hearing tests and checks on her hearing aids. En route to the diner (Mom's favorite place to eat out) I drove past the house that I grew up in--the house that Mom lived in for 45 years, first with our entire family, and then finally, just with my uncle up to 7 years ago. I stopped in the driveway and the following ensued:

Mom: " Why are we stopping here? Who lives here?"

Me: " This is your old house."

Mom: " Are you sure?"

Me: "Yes, I'm sure--remember sitting on the front porch? You lived upstairs and Uncle Frank and Aunt Sylvia lived downstairs."

Mom ( with a blank look on her face and a shrug of her shoulders): I really don't remember this at all."

Ahhhh-- yet another unpleasant surprise as part of the ongoing changes that occur all too often. Slowly but surely the threads of our shared past are unraveling. The woman with the most wonderful memory can't recall the house where she raised her children and sat Shiva for her father and husband. I can live happily without more surprises like this one!

And yet, the rest of the day was successful--we lunched and talked briefly and took care of the hearing aids that have not been functioning correctly for quite a long time--in all, an okay day if I can forget what she has already forgotten.

How Should I Answer This?

Each night a conversation on the phone keeps me awake with worry. Mom calls or I call her between 9:30 and 10:00 PM. She needs to hear my voice each night before going to bed, and I am happy to offer her that connection. However, the caveat in that conversation is that each night she asks " When can I finally get out of here (the nursing home) and go home?" I often respond with the evasive--"we'll see"-- the same phrase that she used so many times on my brother and myself while we were growing up, and we hated it! She recently began asking to come live with me--something she always said she wouldn't want. This is the dilemma. How do I answer that? I know intellectually that I can't really provide all that she needs right now without essentially tabling my own life and offering her no social interaction except her contact with us. She needs professional people to manage her medications (she would fight with me about taking them); she needs professional people to insist she take a shower (she might not be able to get in and out of our bathtub to shower, and would fight with me about the need for one); she refuses to have her clothing washed, but the aides in the nursing home insist, and get to do it; when she gets sick, I would not be able to get her to the doctor because she would not agree to go (this has happened before); she cannot be left home alone--so I would need to take her everywhere with me and Larry; she cannot travel long distances ( we would not be able to visit our out of town children and grandchildren ); and my brother is not willing or able to give me the respite I might need from the daily life of mom living here.

So, how much of this sounds selfish and how much of this is the reality that she really needs professional care that only a nursing facility can offer since she hasn't the financial resources to pay for help in the house. The question of the day, night, week and month is how do I answer her plea for escape from the nursing home? Even when I attempt to explain, she forgets the conversation and we repeat it each evening. I am at a loss for the "right" answer. I want to be sensitive and loving and none of this ever sounds that way. I muddle through each night and then agonize that I am STILL not the daughter I want to be.

The Downward Spiral

Soon a new year ( a lunar year) will begin. With it, the change is palpable. My mother, who never stayed in her room or refused to leave a bed, or failed to get dressed unless she had a raging fever is now a different person. Last week I needed to feed her her lunch and she fell asleep while eating it! True, she had bronchitis and the nursing home doctor probably waited too long before prescribing an antibiotic, but there is more to it than that.

I fear that my mother is spiraling downward both emotionally and physically. It is what I feared when we first talked about a nursing home. I believe that she is giving up. I believe that she is so depressed by the surroundings and the finality of her new address that she can't muster the physical or emotional strength to meet some of the challenges of daily life. Of course I pray that once the bronchitis is gone she may rebound, but inwardly I fear that she will not. She speaks about all of her losses--my dad, her vision, her home and her independence every day! She sounds beaten and hopeless in a voice that I cannot recognize. She apologizes for dumping these things on me ( her words, not mine) but always says that she has nobody else to talk to. I have tried pointing out other friendly women who might be good to talk to. There are actually several people who greet her each day. But she is spiraling to a place that really can't be open to friendships--she just doesn't have the emotional energy for it.

I plan to speak to the psychologist and social director about her, but I'm not sure they will be able to get results--is this the Alzheimer's or is it due to having a broken spirit? Herein lies the devil's curse-- I may never really know that. All I know is that 6 months ago she was markedly different. She was mildly confused and forgetful, but she got out of bed every day and had a purpose to her life. Now she believes there is no purpose and lacks any of her old traits.

The downward spiral is sucking her in and I fear I cannot stop it.

Enemy #1-The Telephone

When I was 15 years old my father gave me an egg timer to help me shorten my telephone calls. He was never a big fan of long phone conversations and hated that I stayed on the phone almost every night with my school friends. To be fair, I think I was like every other teenage girl of the time--we reviewed and replayed everything that happened in school during the day and planned the next day, on the phone. The egg timer became a family joke when I would turn it over at least ten times during each call--Dad knew it was a losing battle and just smiled.

Now, I would love to use that timer again. The phone calls from my uncle are painful. He has lost so much physical strength within the last 3 months that it has broken his spirit. He has become a whimpering, weak, sad shadow of his former self. The calls are usually filled with complaints of nurses or aides not attending to his needs properly or quickly enough, or distress about physical maladies that are magnified by too much time on his hands and complete immersion in his diminishing abilities. I completely understand and sympathize with his sadness and depression (he refuses to take anti-depressants --or mind-bending drugs as he calls them, because he doesn't want to lose mental clarity). I am just at a loss for easing the miserable state of being completely cognizant of your frailties without solutions to the problem. The calls are long and agonizing, with my own helplessness to fix things running rampant.

Phase two of the same day also comes in the form of the calls from my mother as I've described before--she's unhappy with being in a nursing facility, she's lonely, and now, always "losing" something. Sometimes I'm able to help her locate the missing object and sometimes just talking about life outside the walls of the nursing home lift her spirits. Sometimes I can visit and take her outside or out to lunch, though she often seems a little fearful of leaving the environment she's accustomed to. The catch 22 for me is the ways to ease her boredom also yield a certain amount of angst for her. The larger dilemma lies in trying to be more than I am. I am not a doctor or psychologist. I am just a daughter trying to ease the complicated state in my mother's aging.

I have now dreamed of the 3 minute phone call. Maybe Dad was on to something. If I could keep each phone call to only 3 minutes, my frustration with just being a sounding board for all the difficulties of growing old would be under control. If I could just be the voice they both need to hear so they know that someone is listening to them that might work.

There are those who age so gracefully and who are fortunate enough to maintain good health, eyesight and mental capacity. Then there are countless others who languish in the grey zone between vibrant life and the great beyond. The latter seek counsel in so many ways. The phone becomes the single lifeline that connects between the two worlds. I guess I'm just the lucky one who is at the end of that line for my mom and uncle. Sometimes I'm honored to give them a little of what they need, but sometimes I just wish I had an egg timer!

It Happens Almost Every Day

Most people begin their day with the annoying sound of a clock radio or a buzzer to awaken them from their dreams. In my new life, I don't use an alarm clock, but frequently deal with the telephone ringing before I've had my morning coffee. The conversation is nearly the same each morning and it goes something like this:

Mom: Hi, Ann

Me: Hi, good morning--how are you today?

Mom--Right now I'm pretty annoyed--my ____ is missing--who would take that?

OR: I'm so unhappy and bored--I want to go home. I'm really tired of this place and I don't understand why I need to be here.

Me: If that top/nightgown/robe is missing, it must be in the wash.

OR: I know it's not easy to adjust but once you get going, you'll have a pretty good day--there's _______activity planned today ( I make sure to have the nursing home calendar handy so I can tell her what's on the agenda for the day)

Mom: I really think I should be going home--there's no reason for me to be here-- I had a good life and now I have nothing--this stinks!

This conversation is also replayed most evenings between 9 and 10 PM. because she doesn't remember that we talked in the morning.

I don't blame her for having difficulty adjusting to her new life; or for missing her old routine and being surrounded by her own things collected over a lifetime. I don't blame her for forgetting that we talked or visited earlier in the day or 2 days before. I don't blame her for lamenting the loss of most of her eyesight and the strength it now takes to face each new day.

I don't blame her for wishing for a different old age because I also wish things could be different.

Yet, I still hate to begin and end each and every day this way. I still feel as if nothing I do is enough to ease the discontent and loneliness. I still feel guilty for having plans or going on vacation or for wanting to have my morning coffee without this daily ritual. Then, I feel guilty for wishing it would stop--what am I really wishing for? Am I hoping her dementia gets bad enough for her to forget how to use a phone? Am I wishing for worse than that, so I can move forward with my own plans? It is an uncomfortable place to be. My job is not a good one--not one I would choose to interview for-- not one I wish on anyone else. Yet it is the job that I presently have and will have for the foreseeable future. So, I must learn to adjust to the new morning and evening ritual and take comfort in the notion that sometimes she just needs to hear my voice. Sometimes she really doesn't expect me to fix anything--she just needs to vent her dismay at an old age that somehow tricked her into being old. Sometimes she just needs to know that there's someone there to listen, and that someone is ME!

An Island in Time

I decided it was a good idea to pick Mom up and bring her to our house for lunch. I was filled with anxiety about the day because I feared that once Mom was at our house she would refuse to leave or make a scene at the nursing home when we brought her back. I was cowardly enough to "buy" insurance of her return by suggesting that her male friend also come with us. Truth be told, I still feel indebted to him for all of the help he offered so freely when Mom was still living at home, so it seemed like a win-win situation. The trips back and forth to the Bronx were the only thing that I couldn't control, but with Larry splitting the driving with me it became less daunting.

I seriously doubt that we could duplicate the day, and I'm not sure I want to try, but for 4 hours I was able to forget that my mother has dementia and that she now resides in a nursing facility. She was so happy to be in the car going somewhere. She was engaged in some conversation and was more of her old self than I've seen her in a long time--this of course begs the question of what institutional living does to a person, but that will be a moot point for right now. For me, I was able to play hostess to two people who thoroughly enjoy each other's company and who savored the simple lunch and time on our deck. They marveled at a slideshow of vacation pictures from our beach vacation, and held hands on the couch as we chatted.

Even the trip home was the cutest thing--they fell asleep in the back seat of the car, holding hands! Of course they each needed their walker when the trip ended and we brought Stanley home, and Mom back to the nursing home, but who cares? For one afternoon we were all able to enjoy a simple time. We were exhausted by the driving and extra care of two senior people, but it was well worth it. I only hope that when I'm that age someone cares enough about me as a person to allow me the island in time that we shared on a summer afternoon.

60 years ( almost) and counting

For some strange reason this birthday is looming so much bigger than any other. It sounds like such a large number, and I find myself filled with trepidation about the next decade. I know that I had trouble living through my thirties, and so, maybe the new decade is more scary because so many people develop new health problems once they become (ugh!) a senior citizen. All the pollsters begin a new group for people older than 59-- I pray that I don't start thinking like an old person just because the calendar page will turn next week.

I also think that the transition we've made with Mom this year is bringing new meaning to getting older. Of course, we all want to get older, since the alternative is unknown and may really suck, but I fear the process of losing my spark; losing the youthful interest in so many topics and losing the ability to keep up with conversations and long walks. I fear that I really will start acting like an older person--or worse, still, that I will lose the ability to remain open to new ideas and technology. I already have a challenge with the TV or the blu-ray. What will happen when newer technology comes along. I hope I can keep up. I don't believe that my Mom did right away--she was the only one who taught all those "old ladies" to program their VCR's a while ago. She kept driving until she really couldn't any more and she remained current with things in the news. So maybe I'm not afraid of 60 as much as I'll be afraid of 80!

Maybe that will be the new horizon that scares me to death (if I'm lucky enough to still be around).

Maybe just being afraid of acting old will be enough to keep oldness at bay for a little while longer. I still want to hold the wonder of the world around me the way that our grandsons marvel at simple things like clouds, bugs, volcanoes and the hair on your head. Maybe allowing myself the time to wonder about things and travel to see new places will be the anti-aging agent I seek. Only time will tell. I hope the people who love me will be open and honest when I start acting too old, so I can readjust my thinking for as long as possible. Maybe 60 won't be so bad, after all, I feared all the other big decades and grew through each one. I wish Mom were able to remember how it was to turn 60, maybe she could guide me through that time, but I'll be happy if she remembers when my birthday is, and maybe we'll share a smile and a single memory to hold old age at bay for just another day......

The Mourning Process

I am convinced that I am essentially in mourning. The sadness that has come over me may be depression, but I honestly believe that seeing Mom's furniture and life's treasures donated and or tossed away has brought me to a level of loss. All of this was supposedly completed last week as my brother and I handed in the keys and signed off on Mom having a residence of her own. But with Mother's Day approaching I need to keep reminding myself that I still have a mother who can be visited and is part of my life.

The fact that she no longer is really the person I used as my model for mothering is part of the mourning process. I don't think I ever really understood how much I looked at her as my guide until this year. I rarely asked her opinion when I was a young mother. It always seemed as if I was charting my own territory--learning how to parent with Larry and doing what seemed appropriate for our sons at different times in their growth. But now, I think I really used her as the guidepost for most of those parenting decisions. Maybe it's true for everyone--that adage you "Parent as you were parented" is more valid than anyone wishes. Sometimes we make a decision to do something completely different than our parents did, and I remember those times, but I believe that more often than not, I followed Mom's lead because I believe she was a great mother! She built confidence and security into our lives while offering her unconditional love at all times. She was flexible and accommodated our crazy schedules while often foregoing things that were important to her. Finally, the love that she and our Dad shared gave us the model that we needed for the way a marriage and a family SHOULD work. Of course, I've done a few things differently, but for the most part I think I didn't reinvent the mousetrap. I followed that pattern that gave me security as a child.

So, now that security is shaken. Seeing Mom diminished, and finding her without the possessions she so lovingly collected has made me aware of losses in her capabilities and persona--things that can't be retrieved. So, as Mother's Day approaches, I must deal with the new Mom I have--still embodied in the blond (now grey), blue-eyed person I've loved, but different nonetheless. So the mourning process begun by dementia will continue. Still, at least for this year, I can wish my Mom a Happy Mother's Day, and know that at some level she'll enjoy the day and we will maintain the bond that has supported us for nearly 60 years.

A Walk Down Memory Lane

The process of cleaning out Mom's apartment is nearly complete--of course, so much of her belongings have now just been transported to Huntington that many people would question how complete the process really has been. My job when I'm not in the Bronx, is to continue to weed out the treasures from the trash in order to prevent MY Children from entering the hell that is my life when my day comes. I seriously doubt that they'll waste too much energy on any of it--they don't seem to feel the nostalgia and connection to a person's possessions the way I do-- so all of the things that I have collected through the years will probably wind up on E-Bay or Craig'slist before my body is cold.

The treasures are all in my mind's eye. Although I have found lovely pieces of pink or green depression glass; cut crystal ( not one of my favorites, but Mom always loved it); hammered aluminum trays ( a big 1940's gift item); and old Japanese tea sets; and numerous other "chatchkes", I doubt that the people from Antiques Roadshow will be planning to call any time soon. Most of the things I have found have meaning to ME! -- only because they belonged to Mom and Dad; or either of the sets of grandparents. How to part with these things is beyond me. I find myself agonizing over the process of throwing away or giving away part of my childhood memories. The question is why the pain in giving this stuff away?

I believe that having a good memory can be a curse sometimes. I actually can remember when Mom and Dad or Grandma and Grandpa got some of these things or I can at least remember seeing them in my grandparent's homes when I was a child. So, each item is steeped in warm memories of the people who owned them. The old pictures are emblazened in my mind as times of my life, and remind me of the rapid passage of time that takes its toll all too soon. The question is how soon before my life and possessions are deemed past their expiration date? How soon before my children walk down memory lane and then toss away a life's collection of acquired memorabilia? The sadness and guilt are giving way to the realization that nothing and no one lasts forever--each generation needs to pass the torch and give way to the new--not without a fight, not without love, not without respect--but with acceptance of the world as it needs to be.

Enough guilt, already!

This guilt could be all consuming. I am trying desperately to prevent it from eating me alive but I don't think that I'm succeeding. My conversations with my mother are always centered on her opinion that I ( not collectively with my brother) decided to place her in a nursing home before it was really necessary. She accuses me of looking for the easy way out of taking better care of her and for "dumping" her. I intellectually don't accept those explanations because I know how hard I worked at finding alternative solutions with little success. HOWEVER, emotionally she is able to push every guilt button that exists within me. I find myself questioning and re-questioning our decision. Was there any other way? Could she have managed at home for a while longer without serious consequences? I know that her finances wouldn't have supported it for very long, but I find myself entertaining the notion that it would have been worth the few months in order to avoid the daily barrage that greets me each morning and the consuming guilt that we didn't even try anything else.

I seek help from friends and medical advisors but everyone seems to believe we did the right thing except for me. Maybe Mom isn't the only one having difficulties with her less independent status. Maybe I'm the one who finds it too painful to see this powerhouse reduced to anything less. Maybe I'm the one who is fearful that it will be me some day who must endure the same end. Maybe it's not really guilt, but it's just fear? I never operated on guilt very much. I always prided myself that I just try to do the right thing out of love, Herein lies the crux of the problem. This decision doesn't feel like a loving gesture. This decision feels awful and convincing myself that sometimes love includes making painful choices is the hardest part of all.

Guilt, Sadness and Age

Every time in life has its highs and lows. Childhood always seems so attractive to adults because it seems so carefree. Yet, having spent so much time with small children I can tell you that childhood is fraught with disappointments, hurts, "boo-boos", fears about fitting in and wishing for the next step--growing up.

Adolescence is even worse, yet it is also the most fun anyone ever has. All that peer pressure, swirling hormones and struggling to find an identity separate from parents, blended with parties, learning to drive and having friends that mean the world to you makes it the most exciting and troublesome part of our days. Then, there is the decision to go to college (and which one) or to find a suitable job or to join the military.

Young adulthood also brings new responsibilities, connections with peers, bosses who may or may not appreciate your own special talents and the search for that one special person who makes you feel complete. On the heels of all of this comes marriage, parenthood and often, a mortgage. This is the central most defining part of anyone's life in so many ways. There is sadness is giving up the freedoms of younger, carefree days, a sense of time suddenly passing too quickly. It also holds hopes for success; schedules that are often unrelenting, sleepless nights and watching children take their first steps and say their first words.

Before we can turn around children turn into preteens and we turn into middle aged people. We sometimes witness deaths of a parent or other loved one and become so much more aware of our own mortality. There is often guilt in lost relationships or for time seemingly squandered. There is sadness for dreams that might never come to be and new hope for our own graceful aging and dreams yet to be realized while supporting the burgeoning dreams of our children.

By far, the worst time can be old age. Infirmity and our own ability to accept those changes define the way the world sees us. We can be "old biddies" and "grumpy old men" or distinguished elder statespeople of our generation. Some of it is our choice, but much is not. The luck of the draw and the sadness of dreams that never came to be; lost friends or spouses and frailities that seize our bodies or minds define how we will age. There is guilt for opportunities that defied our reach; anger for days spent in pain or boredom; and sadness for a life that seemingly went by while we were paying attention to something else. There is also the gift of more free time, glowing memories of trips taken and love that endures forever.

Each time of life has its good days and its bad. Life challenges us to rise above the guilt, sadness and aging that is inevitable and revel in the smallest genuinely joyful moments that fill our hearts with happiness and may be remembered vividly in the twilight of our days.

For the Love of Mom

It seems fitting since tomorrow is Valentine's Day to think about how to make mom really happy on the day of love. This has been increasingly difficult since my Dad died 20 years ago. Of course, I could clearly understand her sadness on the one day each year that people declare their love. But, just as I was getting the hang of that one--telling her about the accomplishments of her grandchildren, bringing a box of sweets or sharing the cute things the great-grandchildren have said, I am now in a new arena. With mom now in a nursing facility, the only thing that I could possibly say to make her happy would be to tell her she's going HOME!

The notion of going home and finding solace is as old as man--even the cavemen were probably thrilled to put their clubs at the door, kiss the wife and settle in for a nice time by the fire. When home is the sanctuary it is a blessing. This is mom's fond memory. However, now, going home would never be what she remembered because it would involve full time aides to keep her safe. She would hate having a stranger in the house all the time "watching her" ( as she says). Yet, this is the reality that we face--she can be home and unhappy with the turn of events, while we scramble to piece together the right mix of kindly, affordable aides for just long enough to use up her assets and then move her back into a nursing facility; or pray that the daily barrage of "when am I getting out of here?" finally stops and she makes her peace with the nursing home as her abode. If her handling of her finances hadn't been the way it was, there might have been other options, but for now, until I win the big lottery, I cannot fix the series of events that were put in motion by poor choices and dementia.

I really want to be the daughter who lovingly visits and brings sunshine into my mom's life, particularly on Valentine's weekend, but I know that instead we will go head to head trying to explain something that she can never really understand. I wish a geriatrics professional could give the recipe for handling this, but to date, no one has the answer. They all just say to humor her. This is not working, and my ability to cope with it is suffering the consequences.

Mom-- I know you won't really believe it, but I love you and want the best for you. Home is not what you really want. What you really want is to be capable and independent again and this, my love is not today's reality. Happy Valentine's Day from your daughter.

Sadness Prevails

The inevitable has happened. Mom's lethargy was part of a urinary tract infection that led to a hospitalization, that led to needing the custodial care in a nursing home. The events of the last week have given me a crash course in medicine (primarily geriatrics)and a preliminary degree in social work as well as disdain for our health care system. The idea that a middle class person who worked hard all their life and paid taxes while following all the rules should need to be bankrupted in order to get the help they need in old age is appalling and completely unacceptable. For all of the people who fear universal health care coverage and believe that it's socialism, try placing your parent in a nursing facility in their old age and then come back to report how well our present system functions. It is ludicrous to think that I needed to spend an entire week on the telephone trying to sort out the care options and placement for her instead of being able to spend that time visiting and comforting her while she was ill and afraid. And, in the end, found out that after paying for medical insurance for years and years, there is still no coverage available for a middle class person who needs custodial care. So all that my poor father worked 72 hours a week for, over a 45 year work history needs to evaporate before any assistance becomes viable. In a word, it's disgusting!!!!

All of that being said, I also need to come to terms with seeing my dear, sweet, intelligent mother needing a security ankle bracelet in the nursing home because she's a "flight risk". I need to field the constant questions about when she'll be going home and continue to be creative in answering those ponderings without owning up to the reality to her, that she most probably needs to stay there for her own protection. Of course thousands of people my age are doing exactly what I've done this week. That's little comfort because right now, sadness prevails.

Anger vs. Sadness

I am all too frequently angry or sad these days. The anger stems from the endless phone calls that are required to answer the same questions over and over again and the unfortunate imbalance of my responsibility and involvement in my mother's care compared to that of my sibling. The sadness comes from the need to be so involved in the first place after becoming accustomed to a mother whose life was vital and independent.

Today is mostly an angry one. My mother is not feeling able to do anything--she may be reacting to new prescriptions or this is a new piece depressed piece of the dementia puzzle. I spent all day with her yesterday and hoped that my brother would be able to shoulder some of the responsibility of calling her doctor and taking her to an appointment if that is what the doctor suggests. Instead, he is STILL asking me to come there ( an hour trip each way) because he believes it would be better for two people to do this. No sh...!! It would be better so many days that I am the only caregiver to have more than one person involved, but I wind up doing everything alone. Now, when he has to be the only one, I am not free to just be me for the day, but need to be on call and will probably still wind up going there again! Of course I could stand my ground but that's where my feelings of devotion and responsibility won't permit that, and he knows it.

The prevailing sadness and disappointment that mom's life has come to this, and the problems inherent in the sibling relationship all are a heavy burden. I live this issue with her almost 24/7,( via all the phone calls, errands and countless visits) while my brother is still able to walk away from a lot of it for weeks of non-involvement and excuses about work taking too much of his time. He also doesn't help with our 86 year old uncle who depends upon ME from a nursing home. The sadness is shadowed by anger and vice versa throughout the day, but today the anger is winning!