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.