Z           Zinnias

 After twenty-five days of sad and depressing posts, I want to send all my loyal readers a beautiful bunch of flowers:

My mother’s favorite flower is the gladiolus, and it’s become mine, too; but I also love the brightly colored, happy-faced zinnia, with its center surrounded by yellow stars. I just throw a few handfuls of seed into my garden, and they come up to brighten my day. Enjoy.

And now it’s time to zone out and let my poor blog (and its author) catch some Zzzzzzs for a while before I turn into a zombie. It’s been a frantic, sometimes difficult, but rewarding month. It’s been good for me to write about and share my experiences of the past few years, and I hope I’ve been able to convey some sense of what a special person my mother was and is. I also hope I’ve been able to provide some support to others who are struggling with dementia in a loved one.

I thank everyone who’s taken the time to read and comment on this blog. I appreciate all your thoughts and compassion and in some cases commiseration. The journey through dementia is a very difficult one, but being able to share so much of it has helped considerably. This group has been wonderful. Now that the chaotic month is over, I hope to go back and catch up on so many of your posts that I haven’t been able to read till now. I think we have all done a fantastic job, so let’s raise a glass of zinfandel and give each other a toast!

Y    Young at Heart

My mother has always been young at heart. People have always been surprised to learn how old she was, and that hasn’t changed now that she’s ninety-nine. She doesn’t look like a ninety-nine-year-old, and if she hadn’t contracted dementia, I’d bet she wouldn’t be acting like one, either.

 

My mom was thirty-eight when I was born, and she had my brother sixteen months later. I like to think that we kept her young. My parents, even though older, always did plenty of “kid” things with us, like amusement parks and picnics and playing games. I didn’t even realize my parents were older than most kids’ parents until around high school, and it never mattered to me.

 

My father passed away when he was only sixty-eight. I was twenty-eight, younger than most children are when they lose a parent, yet I had still grown to adulthood. I worried a lot about my mother after he died, afraid that she would give up on life. If I had known then that she would survive to be ninety-nine, I would have been overjoyed—and would not have suspected that a brain disorder would take most of her away from me before her physical body gave out. Nevertheless, I’m very grateful to have had her as well and young-spirited as she was until her mid-nineties.

My mother loved gardening and even enjoyed yard work, and she did those as long as she could. She had to forgo the gardening when her arthritis got so bad that she couldn’t kneel any more, but she continued to mow her lawn and rake leaves and shovel snow. Later my husband and I or my brother would do those things for her, and she fretted about not being able to do them herself and wanted to come out and help us. She still enjoyed cooking meals for us when she was in her nineties.

She would read the paper every day and watch the news at night and kept up with what was going on in the world and in our state. She loved going out with us for car rides on a Sunday or shopping or to dinner. We would take her to Narragansett or Newport to enjoy the water views. Once in a while we’d drive to one of the casinos in Connecticut—not really to gamble but just for the ambiance, to enjoy the lights and colors and watching the people and looking through the shops and having dinner at the buffet. She was as excited as I was the day I won $100 on a slot machine, which I celebrated by treating us all to dinner. And she once bought me a gift in one of the shops there—a pair of Chinese figurines that I had been looking at and debating whether to buy; she decided they’d be my birthday gift from her. I treasure them.

In spite of a few physical problems (arthritis, diabetes) and her chronic anxiety, my mother loved her life. She didn’t need a lot to make her happy. I am so glad that she was able to keep her youthful spirit for so long. And now that her dementia has progressed to the point at which she’s no longer distressed about it, she’s regained some of that spirit; the staff loves her sense of humor and wit. And that is a blessing, for her and for me.

X Factor

X    Is There an X-Factor in Alzheimer’s?

What is the secret contained in the brain that leads it to develop the plaques and tangles of Alzheimer’s, that makes itself shrink, that paralyzes memory and thought processes and motor coordination?

 

Will there be a “magic key” that scientists will discover someday that will unravel the entire mystery?

 

Will it be an identifiable gene? Or, more likely, some untold number of different genes that somehow interact with each other and with environmental factors that affect different individuals differently. This seems to be the story of science.

 

Sometimes I think of how many diseases there are that destroy bodies and minds and that it seems like being able to cure them is just a quixotic dream. Yet progress is being made every day in medical science; progress is made even in tiny steps, steps that hopefully will someday join to lead us to a new pathway to cure and prevention.

May we soon discover that key, and “X” out Alzheimer’s from our vocabulary.

W   What I Didn’t (and Did) Learn from my Mother

How to Be Domestic: It wasn’t her fault. She tried. She tried many times while I was growing up to teach me to cook. I just wasn’t interested. I wanted to read.

 

Oh, I used to make a few things once in a while. I had to take Home Ec in junior high, in which I learned to make chicken à la king, and I did actually make that one for my family…once. There were some cookies, maybe a cake; later on I tried my hand at eggplant Parmesan and a gourmet mac-and-cheese recipe. But those times were few and far between.

My mother was a fantastic cook; so was my roommate. I was glad to let them have their way in the kitchen (lest you think I took advantage, my roommate didn’t drive at the time, so in exchange for cooking I did the driving). So cooking wasn’t my thing. Neither was (or is) cleaning. I’ve never had much of a flair for decorating, buying nice furniture, or arranging things.

However, there was one domestic thing we did share for a while: sewing. My mother was always good at that. I remember her making clothes for a doll I had as a child--a little doll, smaller than Barbie, and she did a great job. I got interested in sewing as a teenager. We set up our machine in the downstairs family room. We had a pool table that came with a plywood top for ping-pong. We put that on top of the table and had a perfect place to lay out our patterns. I was into dresses at the time and made several— even my high school graduation dress. I stopped sewing around the time I went to college--too busy then--and I never went back to it. Maybe I should pick it up again sometime. I have since also learned to cook--somewhat--with a few good cookbooks and a great set of recipe cards. We even used to have my mom up for dinner, and she was impressed. Better late than never, I guess.

Self-Confidence: This wasn’t her fault, either. Psychologists say that children who are always criticized by their parents grow up lacking self-esteem, but that didn’t happen in my case. My parents thought I was wonderful. I was the one who didn’t agree. My mother still thinks I’m beautiful and smart and a terrific person (in fact, so does my husband). I don’t know why she could never teach me to believe that. But then she always said she didn’t have any self-esteem, and I don’t understand that, as she was beautiful, smart, etc. I guess the negative self-views just seeped into me by osmosis and no logical arguments can overcome them.

Storytelling: Both my parents were wonderful storytellers. My father had a storehouse of tales about growing up in Brooklyn and the kids he hung out with and the silly nicknames they had (his was “Dutch”, as he was German), and also stories about the war years and his time in Europe. He would tell us about people he worked with and about the wisecracking waitress at the restaurant where they had lunch. My mother just had a natural way of being funny, whether she was telling stories about her childhood and her five siblings or about a surreal conversation with a hairdresser or how strangers would talk to her in the supermarket. I wish either of my parents had been a writer and had written down some of those stories, because I forget so many of them now. I’m the one who has always wanted to be a writer, and yet I find it so hard to just tell a story. I love to create characters and get into their psychological depths, but the simple structuring of a plot seems to be beyond me. And I can’t tell a story orally to save my life; maybe this is a consequence of my extreme shyness, I don’t know--a fear of the sound of my own voice? Could be. I wish I had inherited that facility, though.

What I Did Learn from My Mother

First and foremost, a sense of humor. How to laugh at odd little things. My mother’s humor always had a little caustic edge, often directed at herself. Over the past years, as I’ve watched her grow old, I’ve marveled at how she could maintain that so well. When arthritis all but crippled her, she’d laugh at her own moans and groans, make funny faces, and joke about the cane she had to carry and the walker she eventually needed. Even now, with dementia, she can still make fun of herself, and her sense of humor delights the staff members at her residence. I hope that I can do as well as I grow more and more toward her age and less capable of certain things.

Conversely, and because not everything you learn is good, she taught me to worry. My mother has always been a champion worrywart. She worried about everything, from the weather to how much food she had in the house to whether my dog had had her dinner yet. Most of all, of course, she worried about us, my brother and me, and that didn’t stop when we were out of the house and married. Much of what she worried about were really trivial things, but because I lived with her and absorbed so much of her, I picked up the habit. I’ve gotten much better as I’ve gotten older, though, and I suppose both of us learned to cushion our anxiety with the aforementioned sense of humor (and a little bit of anxiety medication).

Love of reading. She used to read us stories at bedtime every night, and I learned to read by following along in the book with her while she read. So I was reading at age four, and I haven’t stopped since. I remember my mother belonging to one of those mail-order book clubs, and I would devour the bulletins she received with the month’s offerings, though the books themselves were too sophisticated for me. But I did join a couple of book clubs for kids at different times. Later on my mother’s taste turned to true-crime stories, and that couldn’t have diverged more from my taste. She loved Ann Rule, who seemed to write a lot about family murders; I always wondered how my gentle, refined mother could enjoy such grisly stuff. She told me it was real life and that I was too sensitive. I said I didn’t want any part of that kind of “real life.” I preferred my classic novels. It was hard for me to watch her get to the point where she couldn’t read any more, not because she lost the ability but because she just couldn’t process or retain what she read.

Most of all, though, she taught me love. Her love was always unconditional; there was nothing she wouldn’t do for my brother and for me, for my father, for her siblings and their spouses and children, for anyone she cared about. My mother liked to put on a pretense of enjoying being a loner, of hating to be bothered by social obligations, but I know that she enjoyed being with good friends and with all of her extended family. We lived in Illinois until I was nine, far from my parents’ families in New York, but we would travel there in summers to see them, so we developed connections that have deepened and lasted over the years. Your family is really all you have, the people who will be there for you, and I’m grateful to have had a wonderful one.

V is for Vigilance

V   Vigilance

I’ve mentioned a few times before the staff in my mother’s memory care unit. But I haven’t yet given them all the credit they deserve. Certified nursing assistants have an incredibly stressful job, yet they handle it with so much aplomb. Their caring, compassion, and genuine love for their charges is both comforting and inspiring to us who have loved ones under their care.

When caring for someone with dementia, you absolutely have to be on your toes all the time. I found it exhausting when I was my mother’s primary caregiver. Making sure she used her walker when she got up and not just a cane. Rushing around to her side of the table to help her get up and balanced on the walker. She would put a light under a kettle on the stove to make coffee without putting water in it first. She would try to carry the cup on the seat of her walker and end up spilling it. She would put garbage and dirty dishes in her walker basket and wheel them all around the house or leave them there for days. We were constantly looking for her glasses, her dentures, her hearing aids, even her shoes.

Even when I visit her now, there are things I have to watch for. We bring her coffee, and I need to make sure she holds the cup straight so she doesn’t spill it on herself. Guide her hand so that she places it securely back on the tabletop. Keep her neighbor at the dinner table, who has quick reflexes, from grabbing her drink or her cutlery. Try to get her to use her napkin instead of her sweater to wipe her mouth.

All this is the reason I have so much respect and admiration for the CNAs. Multiply all these tasks by more than twenty residents, multiply by all the minutes in all the hours in their shifts, and increase the severity of tasks by the severity of the person’s incapacitation, and you may get some idea of the stress factor of their work.

Vigilance is a constant. There are usually four or five CNAs on the unit on any shift; each one is responsible every day for a rotating list of residents. Nevertheless, when they’re in the common areas, they have to keep an eye (sometimes those eyes in the backs of their heads) on everyone. If someone who’s a fall risk is struggling to get up from a chair, whoever is closest needs to rush over to help them. Another resident may be trying to get out of the locked unit door. Another one may start to shout at a fellow resident. People need to be helped to the bathroom. One person may have just poured her juice all over the tablecloth. Someone doesn’t like dinner and wants something else. A couple more need to be fed. Someone is shouting that she wants to go to bed instead of eating dinner; another keeps getting up from the table, refusing to eat.

The CNAs need to know where everyone is at all times. If a resident’s daughter took her out for dinner, that must be written down. If a few of them went to hear a concert in the main assisted living unit, they have to know who they are and when they’ll be back. At least one CNA must be in the common area at every moment. Among all these duties, they somehow have to find time to clean up, to do laundry, to play games with the residents, to accommodate requests from residents and residents’ family members.  And to keep cheerful and pleasant demeanors all the time, which they do, because they genuinely love all the residents. They know them, and they treat them all as individuals. They know what they like and don’t like. They joke with them, dance with them, sing with them. One of them recently said to me, “It’s hard work, but it’s good work.”

I bless them all. I could never do it, but for those who can, it must be so fulfilling, knowing you’re giving security and warmth and care to people who have done so much in their lives, made so many contributions, and who just can’t any more. My friend’s father had dementia and cancer and lived in a memory unit. After he died, she and her brother donated what was left of his money to the Alzheimer’s Association in the name of all the staff members in her father’s unit. I think that’s such a lovely way to honor them. I don’t know if I will have the resources to do something like that, but I’m glad she did. They deserve such a tribute, these people who work so hard for and care so much about the people we care about.

U Unremembered

When you lose your only sibling, you lose much more than the person he or she is now, more than his or her presence in your life.

You lose the only person who shared your childhood and your growing up, the one who has so many of the same memories you do.

When you lose someone, people tell you that you will always have your memories, and in a large way that’s true. But in other ways it isn’t true.

 

A memory shared is a memory enhanced; in talking about it, each person adds things the other forgot, adds his or her own point of view on it. A memory no longer shared is half lost.

And when, on top of that, you lose your only remaining parent to dementia, the damage to the past is multiplied. There’s no one now to whom I can say “Remember that candy store in Chicago Heights and how we used to have to go through a tunnel under the street to get there? Remember the ice cream place where the scoops were square-shaped? Remember when we moved to Rhode Island, and how I couldn’t imagine that there was any place that wasn’t in Illinois? Remember?” Now I remember alone.

This was brought home especially to me when I was cleaning out my mother’s things from her apartment after she moved. She was kind of a pack rat; she had boxes full of old papers, letters, and such. Among them were many of my father’s documents from his service in World War II. My father was a good raconteur and told a lot of interesting and funny stories about when he was serving in Europe. But one thing he never talked about was the concentration camps. It was my mother who told us that his company had been one of first to liberate the camps. Among his things I found some old photos that shocked and froze me: pictures from Buchenwald. I omit the details.

Why had he saved these? Had he taken them, or had someone else? I could understand why he’d never shown them to my brother and me or even talked about it. Yet in looking back I think those pictures might have been a key to some of his behavior that I found hard to understand--mood swings and sudden explosions of temper. How could anyone who saw that not be profoundly affected?
 

Had I known about these photos before my mother became ill, maybe we could have talked about them. I could have asked her why my father saved them. If he had ever talked to her about what he had seen. She always forgave his outbursts when they occurred; did she instinctively understand what those covered-up and unshared memories might have been doing to him?

If my brother were still here, I could share the photos with him and talk about them. Our father had been pretty hard on him at times when we were growing up, yet I know he loved and missed our dad after he died. I would love to know what he would have thought. 

I wish I had had such a conversation with my brother before he passed away, but there never seemed to be the right occasion. I always thought the two of us would have each other after both our parents were gone, that we’d grow old together. I never thought my mother’s mind would fade so much.

I never expected to be the last one left, with memories that will remain only mine and questions that can never now be resolved.  

"T" is for Taking Care

T Therapy, or, Taking Care of the Caregiver

Caring for a loved one with a disease such as dementia is incredibly stressful--as I don’ t need to tell anyone who’s doing or has done it. Psychologists even have terms for it: compassion fatigue or empathic strain. Books, friends, doctors, will tell you that you have to take care of yourself first in order to be able to care for the other person. Figuring out how to do that, though, is a lot harder. Whether your loved one is in his or her own home or living with you, caregiving is going to take a big chunk of your time and a huge psychological toll. Watching a parent, grandparent, or other loved one deteriorate day by day, never knowing what you’re going to find the next time you see her or him, wears terribly on your mind and emotions.

And all this comes on top of many other responsibilities: work, marriage, possibly children, social obligations. Somehow the caregiver needs to figure out how to juggle all this, and inevitably some things have to go.

I was lucky in three ways: I don’t have minor children to care for. I have a husband who cares enough about me and my mother to make sacrifices in his own life for us. And I am a freelancer who works at home. Still, I ended up sacrificing my own home and a good part of my life; I also developed Graves’ disease (hyperthyroidism), though whether the stress brought it on or the disease exacerbated the stress I don’t know. It just made things much harder: I lost weight, I felt exhausted, I had tremors and was short-tempered. Under those circumstances and until I got treatment, I didn’t feel very capable of caring for myself.  

 
Nevertheless, I was able to find a few means of self-defense against the stress; I wrote about a few of them here. Remember why you’re doing it. Treasure the good days. Grab your moments when you can for a quick walk or cup of tea alone. Arrange to see friends once in a while.

Some others aren’t so obvious. First, try to have a place, however small, that’s just for you, somewhere you can go when you need to cry, bang on the wall, or throw something. When we stayed with my mother for two months in her little house, there was no such place. I couldn’t even leave the house unless someone else was there with her—my husband or my sister-in-law—because we were so afraid she would fall. When we moved into our multi-unit house together, I at least had the relief of having our own apartment upstairs for a retreat when I needed it.

The most important thing you can do, though, is try to hold on to yourself: the things that are important to you, that express who you are. Hold on to your interests. These are the parts of yourself that are very easy to lose in a stressful situation, but they’re also the most vital.

Caregivers tend to be in crisis mode most of the time. When I would be upstairs in my office working, in the back of my mind I’d be wondering what was going on downstairs: Is she still sleeping in her chair, or did she get up to go to the bathroom and fall? What if she wakes up, doesn’t recognize her surroundings, and gets scared? Will she open her door and yell “Is anybody here?” Was it time for me to go down and make her lunch or a cup of coffee? It took away a lot of my concentration and pleasure in my work. My conscious mind was always so preoccupied with my mother and her welfare that it didn’t have much room for anything else.

I tried to get back into jogging, and did for a while: I’d go out in the morning for forty-five minutes or so and was usually back in time to get her up and make her breakfast. But soon my thyroid condition made that impossible.

I was able to keep up with my reading, because I could take a book downstairs while we sat with her at night. Still I didn’t want to start reading anything too challenging because my attention was split, and I missed being able to relax in my own chair, in a quiet living room, and read without interruption for a few hours. I couldn’t relax in my own apartment because I felt that when I wasn’t working or sleeping I needed to be with her, and that was true.

After her last fall, broken hip, and subsequent move to assisted living, I began to relax and be interested in things again. I found a new interest in crocheting. I wished I had discovered it sooner, as it might have helped me to relax and have something else to concentrate on; but on the other hand, I might not have kept up with it or taken to it so quickly while I was distracted by caregiving. But in the aftermath of my caregiving experience it helped me return to a sense of myself and gave me some peace.

Finally, there was therapy itself. During the second winter living with my mother, and before I knew I had thyroid disease, I felt at the end of my rope. So I went to a therapist. I had done it before, so I wasn’t nervous about it and I knew it could be helpful. I talked with her about how conflicted I felt and told her that I didn’t feel I’d ever be able to put my mother into a facility. It was while I was seeing her that my mother broke her hip, went into the hospital for surgery, and was admitted to rehab. At that time I still believed that she would be coming back to live with us when she finished her rehabilitation. I told the therapist that my husband and I hadn’t been able to get away at all for the past year and a half. The best thing she told me was to do it.  “Your mother is in a safe place,” she said. “And if you don’t visit her for a couple of days, she probably won’t even remember it.” Just her saying this gave me new hope and energy, and my husband and I planned a weekend in New York,  something that helped renew both our spirits.

As it turned out, my mother didn’t come back to our house, and I didn’t have to make an agonizing decision. The move became inevitable when we knew she couldn’t walk again. The relief I got from having her in a safe place and knowing that she was content there was the best therapy I could have had. Looking back, I remember what it was like, the despairing moods and the uncertainty, and I feel grateful for the ways I found to help me get through it.

"S" is for...Shopping

S    Shopping

My mother loved shopping. In fact, you might even have called it her hobby. And it was one I willingly shared with her.

During the years I lived with her, after my father died, our Saturday ritual was going to the mall. We had two malls in our town, and we’d go to one or the other or sometimes both. Our day started leisurely; we were never morning people. We’d leave the house around 1:00 or so. We could spend hours wandering throughout different stores, just looking, seeing what was new or on sale that week. I’ve never known anyone else I could shop with the way my mother and I shopped together. It was more a social thing than a desire or need to buy something. We enjoyed the activity of the mall, the sensory stimulation, the colors, watching other people.

 

My mother would look for the best bargains. If she found something that was marked down from the marked-down price, she’d say, “For that price I can’t leave it here.” Sometimes she’d try the clothes on, sometimes she wouldn’t feel like it, but either way, there was bound to be something she’d change her mind about and decide to bring back a week or two weeks later. “I don’t really like it/it doesn’t fit right/I don’t have anything to go with it”—whatever the reason was, back it would go. I used to joke with her that the stores were going to put up her picture on the cash register with the warning, “Don’t sell anything to this woman.”

Our shopping trips always included a late lunch or even an early dinner at a restaurant in or near the mall. It was a time to talk and to listen to her stories—she was a wonderful storyteller, a facility I wish I had inherited from her.

What my mother enjoyed most was food shopping, and I did not share her love for that activity. She’d go food shopping during the day while I was at work. When she finally stopped driving, those several-times-a-week trips to the grocery store were what she missed the most. My husband and I began taking her out to the supermarket and to dinner on Saturday or Sunday nights, and that became a welcome ritual, as we were able to do our shopping while she did hers, making that chore a little more pleasant. We’d usually finish ours long before she did; she loved to stop and look at everything, read the packages, examine all the tables in the bakery section. Eventually my husband and I performed a kind of triage on her grocery cart. She would pick up cans of fruit when we knew that she already had a dozen cans of fruit at home, or take things we knew she wouldn’t eat. So we’d sneak them back onto the shelves when she wasn’t looking. She never missed them.

Later on, though, it became too difficult for her to shop. She complained that she could no longer stand or walk long enough. She still wanted to go, but when we got there she would need to find a bench or chair and sit down, asking us to pick up whatever she needed. She’d say her legs were too tired, but I suspect it was also that she was becoming too confused to really know what she was doing.

I’m not the kind of shopper I was then anymore. My husband hates it, and we’ve always had so many other things to do on weekends that I’ve gotten out of the “wandering through the mall” habit. Even when I go by myself now, I go with a focus on looking for something specific. The days of leisurely browsing are past, but I’ll always be glad for the memories of those weekend shopathons and having had that time with my mother.

 R   Residents

I’ve mentioned a few of the residents who live with my mother. Today I want to introduce you to a few more.

Tahini, my mother’s roommate, is a little Indian woman who often wears her long hair in a braid. She is a very sweet and loving person but, although she is verbal, her speech is incomprehensible. At first I wasn’t sure whether she even spoke English, but clearly she does understand it; we can even catch a few English words when she first begins to speak. I often think about how frustrating it must be for her. She clearly wants to communicate, to convey her thoughts, but can no longer make herself understood--except maybe to her daughter, but I don’t know this for sure, either. She does like to laugh, though, and to smile, and that’s also a way of communicating. She loves my mother. In the summertime Tahini will walk in the garden and pick flowers. She’ll bring a few to my mother, who doesn’t really know what to do with them. Sometimes she strokes my mother’s hair or even kisses her on the head; my mother was never used to that kind of physical contact, especially from strangers, so she makes a face, and Tahini laughs when she does.

Margaret  is the “terror of the MCU” (my nickname--everyone there is too nice to call her that)--a little woman with a hunched back who wields her wheelchair like a tank, swearing at anyone who blocks her way. She may be the saddest case, as she has never settled in as most of the other residents have. Gripped by paranoia, she accuses everyone of somehow “plotting” against her. She often catches the ear of Mary, who is also confused but a conciliatory person who tries to make things better for others. We see Margaret whispering to her in a conspiratorial manner and sometimes catch some of the things she says: “How do we get out of here? Why won’t they let us go?” She won’t hesitate to call someone “stupid” or a “damned moron” if they don’t say what she wants to hear. I’ve heard words come from her that shock me from a woman her age. She is very articulate and speaks with perfect grammar and word usage; she can even be very polite at times. She’s come over to us a few times and said, “Excuse me. I’m sorry to bother you, but can you help me?” When we ask what she needs help with, she says, “Nobody will tell me how to get out of here. They’ve locked me in. How can I get out? I have to go home to my mother. She’s sick.” Lately she’s been a little more hostile toward us. She accused my husband of stealing from her purse. Sometimes the CNAs are able to placate her; usually they can distract her long enough so that she’ll forget her complaints for a while. They have infinite patience with everyone, but I give them special credit for being able to deal with her as well as they do.

When we first met Annie, we wondered why she was there. She was intelligent and seemed mentally sound, able to hold conversations and displaying almost normal memory faculties. She was a writer who worked for nonprofit organizations and lived in New York City for many years. She’s able to leave the facility to go out with friends, and she can talk to people on the phone. A few months ago, however, we began to notice that she was declining. Now she shows the typical confusion and illogical speech typical of dementia. She’s the only person we have seen noticeably deteriorate in the time we’ve been visiting.

Ed seems to be the least impaired of the residents. I don’t know his life story, but I like to think that he was a college professor because that’s what he reminds me of. He loves to walk and is always in the garden in nice weather. His son comes to visit, and they leave the building and walk around the grounds, talking. Ed is very aware of the other residents (though again I don’t think he knows anyone’s name). He usually sits at meals with a few other men, and he notices if one hasn’t been served and will tell the CNAs that “this man needs his meal.” He also tries to help people sit down or get up, or by moving their wheelchairs into position at the table. He seems to feel quite at home in the unit, but so far hasn’t shown signs of further deterioration that we could see.

As I wrote about in an earlier post, we’ve seen many residents come and go. Some we get to know, some we don’t. But I think knowing them has enriched my life; it’s certainly reminded me that a person isn’t a disease. These people, in whatever stage of dementia they are in, are as much individuals now as they were before they developed the disease. The staff there knows this and treats them with the respect they deserve; it’s why they’re called “residents” and not “patients.” It’s something those of us dealing with this condition in a loved one often forget but never should: that the person we love may be different now, but he or she is still there.

Q Quality of Life

Q   Quality of Life

Since my mother’s dementia diagnosis, my top priority has been to try to maintain her quality of life as much as possible. “Maintain” is probably the wrong word--it can never be what it was. Maybe I should say to try to give her some kind of quality for the remainder of her life.

The first concern was safety. She had a history of falling, and after the serious fall that hospitalized her, it was clear that she couldn’t be left alone for long. So when she was released, my husband and I moved into her house with her while we tried to figure out what to do.

 

I thought that moving her into a regular assisted living apartment would take care of both needs. Yet it didn’t guarantee her safety--she suffered a bad fall her first night there. And at the time it was the worst thing for her psychologically. So I brought her back home and returned to the question of how to balance safety and quality.

Having us all move in together is the answer that my husband and I came up with, and I honestly believe it was the best one at the time, although I went through some disillusionment there, too. I learned that it wasn’t possible to keep her safe without being at her side for twenty-four hours. I learned that I couldn’t always even keep her safe from herself, from her independent streak and her lack of awareness of her own state of mind. I had also imagined, falsely, that when we lived together we would again be able to share some of the good times we had had, going shopping or out to dinner, or just sharing meals together. I hadn’t realized just how impaired she had really become. Shopping trips became a chore for her, one that she soon preferred to avoid. She slept most of the day. And she would usually refuse or just pick at the meals we made for her.

I believe and hope that the quality of her life is better now that she is in a memory care unit. It was hard for me to watch her struggle to get dressed or to make a cup of coffee after her brain no longer held the schema for those things. Now she is taken care of and her needs are met. She seems content.

We all have our own thoughts about what gives our lives quality and what would have to happen for that quality to be destroyed. I think that not being able to read anymore would be one of the most miserable things that could happen to me. But maybe I would find something else to compensate for that loss. We can never judge the quality of another person’s life. Only he or she can do that. Those of us who are charged with caring for someone with a handicap or impairment are always looking into a distorted mirror, afraid that we’re seeing what we might be “but for the grace of God.” I can’t know what my mother’s subjective experience is now. I can only judge what I see of her. I can only feel that I’ve done my best for her. And that has to be enough.  

Remembering the Vampire

Remembering the Vampire

I am taking a momentary break from A-Z to pay tribute to someone who indirectly had a great influence on my life.

The world has lost Jonathan Frid. Most people will probably not recognize his name, but to many of us who grew up in the 1960s, he made us “rush home from school” every weekday.

He played Barnabas Collins, the original sympathetic vampire, on ABC’s “Gothic soap opera” Dark Shadows.

This is no small achievement. Back in the days before Edward of Twilight and the recent vampire craze in popular culture, Barnabas was something very different. Originally introduced into the show to boost ratings, intended to be a temporary villain who would eventually be conquered and destroyed, Frid portrayed Barnabas as an unwilling killer who hated being what he was and was wracked with guilt for the deeds he couldn’t help doing.

The audience responded to his portrayal with overwhelming fascination and love. He became a phenomenon, particularly among young female viewers, of whom I was one. Each of us felt like the one privileged to know the secret Barnabas had to hide from everyone. Each of us felt that we understood him: the outcast, the rejected, the one no one else really knows. He was the perfect identification figure for angst-ridden teenagers.

And eventually there was another: Julia Hoffman, played by Grayson Hall, the doctor who discovered Barnabas’s secret—and, instead of revealing it, tried to find a cure for him, came to love him, and devoted herself to him unselfishly and unrequitedly. Over the run of the show these two became the de facto hero and heroine and in a sense the moral conscience of the supernaturally plagued town of Collinsport, Maine.

Again, this is no minor point. Dark Shadows began to transform from a simple mindless entertainment to something much more rich, a piece of literature that explored the great themes of good and evil—especially as they can exist in all of us. To me, in high school at the time, it fueled my love of the way literature can explore and reveal the human heart and soul. I took its lessons with me to college as an English major and, much later, when I rediscovered it in the mid-1990s, it colored my study of psychology—particularly themes such as Freud’s examination of the dark side of human nature and, conversely, of the nature of altruism and selfless love.

And it did more for me. In exploring my renewed passion online, I discovered fan fiction. I found people writing their own Dark Shadows stories, taking the beloved characters to new places, and I rediscovered my own urge to write, which had been dormant for many years. I began to write short stories and eventually completed a fan novel. Then, having learned to handle characters that weren’t my own, I learned to create my own. But without Dark Shadows, I probably would never have begun to write again.

I also did something else I’d never thought I would do: I went to fan conventions. The first time I felt a little silly and self-conscious. But there I met a few of the fans I had interacted with on fan sites online and found wonderful, intelligent (normal!) people who shared my—so to speak—obsession. I discovered a group of “soulmates,” those who longed for Barnabas and Julia to be together, and our shared passion led to special friendships that will always mean a lot to me. Although we came from different parts of the country, we found ways and occasions to meet throughout the years, and we shared our lives through e-mail even before the days of Facebook.

One special memory will always be of our gathering in Long Island, New York, to attend a wonderful one-man show performed by Jonathan Frid. He was a very good classically trained actor who perhaps unfortunately remained typecast long after Dark Shadows left the air. But for that alone he will live in the hearts and memories of many of us for a very long time.

He passed away before the new movie of Dark Shadows was released—in which he has a cameo role. It remains to be seen how Tim Burton and Johnny Depp will interpret the role of Barnabas, but for many of us fans, there will always be only one Barnabas Collins. Just as there will probably never be another TV show like this, one that comes along in your formative years and really changes the way you look at things.

(Now, back to A-Z)

P is for Photograph

  

P    Photograph    

                            Five of us are seated around a table at the Cheesecake Factory, facing the camera. My husband and I on the left, and across from us are my mother and my two cousins, who have driven up from New York for the day to visit—and, unspoken, to pay respects to their aunt before she fades away. Outside of the frame is the photographer: my nephew, who is our waiter tonight.

There are empty glasses on the table and two small teapots; we’ve finished our meal. We all smile brightly as people do for the camera, but my mother’s smile is wan, almost straight. My cousins sit beside her, two of the remnants of her family, the daughters of her brother and her sister. There were six of them at one time, three sisters and three brothers, children of the Depression and two world wars, of the automobile and the airplane. Five of them are gone now; she is the survivor, my mother, the strongest of the group. But she doesn’t know that she is. In her mind they all still survive, as does her mother, my grandmother, who died fifty years ago. Time is just a confusion to her now.

Despite the passivity of her smile, my mother looks content. But here is what the picture doesn’t show: the shattering of her life four years ago. The memory no longer lives in her but lingers around the periphery of her mind, shadowing it so that she has to ask me, every so often, “Where is David?” She is not, at least, doomed to remember our vigil at the hospital while my brother was dying. I am doomed to remember it. His wife and children are doomed to remember it. But my mother’s doom is more subtle and terrible: the shutting down of all memory.

In a minute my nephew will sit down next to her. David, named after his now-gone father. He looks handsome in his white shirt and tie, the waiter’s look. He has a large smile and bright eyes, and he loves his grandmother, as she does him. Another question not answered here: how will he handle her loss, after that of his father? No photograph can show loss, but it lies behind all our faces, our eyes. My cousin, who lost her father, brother, and mother within three years, whose son has cerebral palsy and whose husband has multiple sclerosis. My husband, who lost his mother a few  years ago and whose father has endured two amputations.

But this day has been good for us. When time and death fragment a family, we have to put the remaining pieces of love together however we can. Time spent together, crystallized in a photograph. As a family we’ve been lucky enough to love, respect, and even like each other, and in the end that’s really what this picture will show us: what is solid and material and what is invisible yet as real as a table, a teapot, or a smile.

O is for One Hundred

O   One Hundred

 

My mother will be one hundred years old this year.

It’s hard for me to get my mind around that. I’ve always thought of her as so young in spirit. This is a woman who, in her eighties, was still taking care of her own house, gardening, and doing her own yard work. At ninety she was still driving. At ninety-one she bought a new house right next to my brother’s, sold the house she’d been living in for forty years, and packed up and moved. And she still drove for another couple of years--her almost-daily trips to the supermarket--and kept up her house well until dementia stole in on her.

She was a child during World War I and a young working woman during the Depression. She lived through the deprivations and anxieties of World War II, staying with her mother while my father was in the army in Europe. She had several miscarriages before I was born, when she was thirty-eight, and my brother a year and a half later. When my father passed away in 1979 at the age of sixty-eight, I worried that she, like some other widows, might deteriorate without him; but she showed me her strength. She has lived through the losses of all of her siblings and lifelong friends. And, like others of the “greatest generation,” she lived through technological and societal changes that were unimaginable when she was born.

I always hoped, even believed at times, that she would make it to one hundred. I imagined her as being the same as I always knew her, mentally sharp, funny, a wonderful storyteller, independent. By the time she made it to her mid-nineties, I thought she had outlived dementia; I believed erroneously that if it was going to come, it would have come earlier, when she was in her seventies or eighties. I still don’t know whether my brother’s sudden death had anything to do with it, but I know now that the risk only increases with age.

I’ve always hoped too that I’d live as long as she has. Now I’m not sure I want to. Don’t we all hope to live to be old but still have our health and, especially, our mental faculties?

I belong to the generation that doesn’t want to grow old (or sometimes even up). We think we’ll be magically protected as long as we keep wearing jeans and listening to rock ‘n’ roll. And there is something to be said for maintaining a youthful attitude and frame of mind, for continuing to do and learn new things. Science tells us to keep our bodies and minds active as a possible way to prevent Alzheimer’s, but as yet no one really knows what, if anything, is effective in warding off this disease. Yet being an active learner and doer and staying connected socially surely can only be good for us. Maybe for us “boomers” blogging is one way we’ve found to keep our minds active.

My mother will be one hundred in August, and I’m planning a special birthday party for her. We’ll hold it in her facility, and I’m hopeful that all or most of our family will be able to make it. There aren’t many of us left. She has one remaining sister-in-law; the rest will be first- and second-generation nieces and nephews, as well as her daughter-in-law and grandchildren. We’ll come together from New York, New Jersey, and Rhode Island to pay respects to the matriarch of the family and to express love for her. I don’t know how much she’ll understand of what’s going on. Every so often she asks me, “How old am I now?”, and when I tell her she makes a face and says, “Wow, that’s old.” Yes, it is, Mom, and you’ve made it with grace and strength. When I tell other people how old she is, they say, “God bless her.” He has, and I pray that He will continue to do so.

N is for No Cure

N   No Cure

Alzheimer’s disease is just one of many diseases that are currently incurable. The list is long and heartbreaking:

 

•AIDS

•ALS (Lou Gehrig’s disease)

•autism

•cerebral palsy

•Creutzfeldt-Jakob disease

•cystic fibrosis

•diabetes

•Huntington’s disease

•leukemia

•lupus

•multiple sclerosis

•muscular dystrophy

•Parkinson’s

•schizophrenia

 

And there are many more genetic, developmental, autoimmune, mental, and other illnesses. And, although some types of cancer now can be treated successfully if caught early, it still takes far too many people.

In fact, it’s amazing, when we consider how complex the body and brain are, and how many things can possibly go wrong, that so many of us manage to live fairly healthy lives.

Medical science has worked wonders, particularly in the past century, in curing many formerly incurable diseases and finding effective treatments for others. In the case of Alzheimer’s/dementia, medications such as Aricept and Namenda have been developed that can slow down the symptoms, but they do not cure the disease.

But science, like every other human endeavor, needs support—and that means money. Money for research into medical and palliative treatments, to develop new technologies to help people afflicted with some of these conditions, and someday, hopefully, to find cures.

That’s why I’m challenging everyone reading this to take a small part in helping to eradicate these diseases.

Maybe you have friends or loved ones afflicted, or just have an interest in one of the conditions. Mental health has been a personal cause for me for a while now, and I’ve been a supporter of the Menninger psychiatric research clinic for several years. Now I’ve come to focus on Alzheimer’s/dementia because of what my mother is going through. I took part in a fundraising campaign last fall, and I now make an automatic monthly donation to the Alzheimer’s Association. It’s a small effort on my part but it’s meaningful, as it helps them to know they count on a certain amount of money coming in regularly.

Imagine how much could be done if everyone chose just one disease that has somehow had an impact on his or her life and made a commitment to support research on that disease in any way possible. It could be as little as a five-dollar donation if that’s all you can afford. The important thing is to do something. It’ll make you feel good, and you'll be making an important contribution to the world.

So when that next solicitation letter or phone call from a foundation supporting medical research comes, please think for a moment before throwing it out or hanging up the phone. A little bit really can make a difference.

So what diseases have affected your life? Which one will you choose to support research in?

L is for Laughter

L      Laughter

 

During this challenge I’ve taken a few looks at what life is like for people with dementia living in a special facility. I’ve hoped to convey that their days aren’t grim and sad, in spite of what many people without experience with this disease might think. People are still individuals, and in many cases those who have enjoyed laughing throughout their lives may still be able to laugh.

Naomi is a fairly new resident in my mother’s unit. Her dementia is as yet mild. We’ve been able to hold conversations with her. But Naomi is very thin. If she were a teenager you’d swear she had anorexia. And she doesn’t want to eat. She’ll sit at the dinner table for a few minutes, then get up and walk away, in spite of the efforts of the CNAs to get her to stay there. “I don’t want anything to eat,” she says.

Diane is a CNA (certified nursing assistant) from Haiti. She’s short but hefty and strong, and she loves to tease Naomi. When Naomi starts to leave the table, Diane stands in her way. “Where you going?”

Naomi mumbles something, pointing toward the living room.

“No, you don’t. You going to eat.” Diane puts her arms around Naomi. “Look at this, how skinny you are.” She tightens her grasp; Naomi makes a face and starts to laugh. “I can pick you up,” Diane says. “You want me to pick you up and carry you?” “No no no,” Naomi laughs.

By now both women are laughing, Naomi trying to wriggle away from Diane. It’s clear that Naomi is enjoying this mock struggle, enjoying having such attention, having her wits challenged. In the end she manages to slip away, but she’ll later concede and eat some dinner. My husband and I are watching this little contest and laughing along with them.

My mother has always had a wonderful sense of humor. She is a genuinely funny person, funny in her sometimes acerbic comments and her self-deprecation. Even with dementia stealing more and more of her mind, she was able to laugh at some of the things she did. I honestly think this helped keep her from falling into despair. My husband makes her laugh; he teases her and she loves it. He’ll put on a silly hat, or they’ll trade good-natured barbs. He has been wonderful over the past few years in helping to distract her when she’s started to get upset.

This hat dances and plays "Holly Jolly Christmas"!

Shortly after she moved in, when I was still worried about how she would adjust, I was visiting her on an afternoon; we were sitting at a table in the dining area having coffee and tea. In the adjacent living area the activities director was playing catch with some of the residents, throwing a large plastic ball around. People were shouting and laughing. My mother started watching them, and she began to laugh, too. When the ball sailed over the top of a couch and headed toward us, she seemed to be enjoying the playfulness of it. And though I knew she would never take part in any of those games--that isn’t who she is--I felt better knowing that she could get a kick out of watching them. I think it was then that I started to feel that she would be okay after all.