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.