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!