The Holidays

Christmas used to be my mother's favorite holiday - We even called her "Mrs. Christmas". Our house was always full of the excitement of the season. I would get so excited I would spike a fever. My sister and brother remember the holidays differently but I was always excited about the gifts we would get. They say we were poor and didn't have much under the tree--I remember only the majesty of the season, my mother rushing around buying things (if even from John's Bargain Stores--the equivalent of our Dollar Store of today), and the pure, raw excitement within me.
Things have changed - My mother doesn't know that it's Christmas even though we keep reminding her.
I got to New York a few days before Christmas and went to visit my mother. She was excited to see me and I knew that she knew who I was. I identified myself (so that may have helped) but her entire little face lit up with joy when she saw me--that was enough to make my year--talk about day. I stayed and talked with her for a while, then left to go to my sister's house where I'd be staying.
On Christmas day we took gifts and a wonderful Christmas dinner my sister had prepared. She loved her gifts--a warm hat, a long fleece robe. We talked about Christmas and how happy we all were to be together. We took pictures and even though she did not smile for the camera, at least we got images of this special day.You can see her in all of her 97-year glory showing off her new Christmas hat in the picture that accompanies this post.
We stayed for quite some time and on the way out we all gave my mother a kiss - She said to me, "See you on Christmas". That's kinda how it is these days.

My Mother Called Me Today

I was rushing out to a luncheon date when the phone rang. "Hello", I breathed into the phone. "Hi Deanie, it's Mama", the bright, cheery voice said. I was stunned and dumbstruck for a moment. I quickly recovered and said "Mama, you called me. I'm so happy to hear your voice". My mother hasn't been able to call me in 10 years. Alzheimer's robbed her of her ability to connect to others many years ago.

I had purchased her a special picture phone from the Alzheimer's store over a year ago. The phone contained 3 pictures; me, my sister and my mother's niece. Each picture was pre-programmed with the appropriate phone number. To call us, all you had to do was lift the receiver, and punch the picture of the person you want to call. Still, my mother has not been able to call me. I hate Alzheimer's!!!

You can imagine how happy I was to hear her voice.

"I'm at Aunt Helen's house", she said. "I've been here in Brooklyn a week". "I'll be going home soon, though". Now, I know that she was home because her phone number came up in my Caller ID, but I didn't correct her. I was too happy that she'd called. We chatted for a little bit--our basic conversation these days, what's the weather like, what are you doing...As the conversation was coming to a close, my mother said "Ok, Thanks for calling".

With tears in my eyes, I said "Ok, Mom, take care. I love you". And I do.

God's Grace

I’ve decided to return to my weekly Friday calls to my mother. It’s been hard to do of late because the conversations are so superficial. No more in depth discussions about current events, family members and life in general. Basically, it’s “How are you mom?”, “How’s the weather?”, How was work this week?” (she thinks that she’s going to work when she goes to her Alzheimer’s day care three times a week—so we humor her)—Stuff like that. When I hang up the phone, I’m always sad—wishing for those great conversations we used to have.

Well, I’ve been reading Alzheimer’s books lately—books by people who have loved ones dealing with this disease—books by doctors on how to relate to Alzheimer’s patients—books by people with Alzheimer’s. I try to temper my reading by reading one Alzheimer’s book followed by a novel—something to rest my mind. I’m finding that reading these books is really helping me. I’ve started searching for a different way to relate to my mom and I think I’m starting to find my way.

Last Friday I read her a poem. She’s always loved poems and plays. In our church, she was in charge of holiday plays and programs that the children performed—She loved that. The poem I read her last Friday was one that she had read at her 90th birthday party. On that Friday phone call, she did not remember that she’d read it, but she loved the poem and it seemed to lift her spirits.

This Friday I sang her a song. It was a song from my young church choir days. I sang solo and the name of the song was Grace. I remembered the chorus so I sang it to her. It went like this:

Grace, Grace
God's Grace
His Grace is sufficient for me...
Grace, Grace
Amazing Grace
His Grace is sufficient for me

I could hear her singing beneath my words and so I slowed down so we could sing together. When I finished the chorus—Guess what? She recited the first verse!!! I was so excited. All by herself she said:

Grace woke me up this morning
Grace started me on my way
Grace will make you love your enemies
And what is more I know grace will brighten up your day

I couldn’t believe it! It was so wonderful to have her recall something that even I could not remember. As soon as she said the words, I knew that they were correct. I praised her. I said “Mom”, you’re doing better than I—I couldn’t even remember those words—Good job”. It was like music to hear her laugh.

It is so nice to find new ways to relate to my mother. It brings me joy and when I hung up I had a smile on my face.

Happy Birthday, Mom

Today is my mother’s birthday. She is 97 years old. We used to have a big celebration each year but have stopped that now. The last party we had was for her 95th birthday. We had it in September. Why? Because August is really ridicously hot in New York and since Mom doesn’t remember when her birthday is anyhow, September (which is usually cooler) is as good a time as any to celebrate it. The celebration is what’s important.

We gave her a big party when she was 90. She was almost all there for that one and really enjoyed the attention. She has always been a ham. She’d picked a poem to read, we had a great cake, a beautiful scrapbook that the whole family contributed to and we all danced the night away. When she turned 95, we had another celebration but by that time she didn’t seem to understand what was going on. If God blesses us and she’s here for 100 years, we will have another celebration. We’ll celebrate on a small scale from now until then.

In celebration of her time on this earth, I want to share what she’s done for me. She was never the most demonstrative mother and I don’t remember a lot of hugs and kisses, but I never doubted that she loved me.

She read the Sunday comics to me—Every Sunday morning, complete with funny voices

She encouraged me to read – Making it really hard to pick the lock on the trunk where she kept her steamy novels like Peyton Place.

She encouraged me to get a good education. I enjoyed working side by side with her in the evenings as she cleaned office buildings as a part-time job. She never missed an opportunity while we were working to tell me how I should never have to do this—“Get your education—do not expect anyone (read "any man") to take care of you.”

She made the holidays, especially Christmas, a great time of wonder by building up the most hysteria I can remember. I’d get so excited, I’d actually run a fever.

She instilled in me a love of God and church by making sure that we spent hours in church every Sunday and that we also spent hours practicing for the Children’s Choir, Easter pageant, Christmas pageant, and any other pageant she could come up with.

She instilled in me a sense of honesty by making sure that if I ever lied to her my punishment would be so swift and intense that I’d never want to do it again.

She made me believe that I could be anything I wanted. I don’t know if she believed it, but she sure made me believe it.

She demonstrated to me how important family was by always being there for us and for her family.

She inadvertently made me the scrapbooker that I am by constantly telling me family stories—stories that I never tired of hearing. Years later, I would begin chronicling my family history in big, heavy scrapbooks to be passed down for generations.

She made it easier for me to understand the importance of having a life of my own apart from my children’s lives as I watched her life diminish as her children developed lives of their own.

She transferred her fierce sense of independence to me and I have had to grow into the understanding that it is ok to need someone sometime.

I see her sense of style manifested in my closet—from shoes, to coats, to dresses.

She has passed down to me a sense of organization—true I’ve taken it to a whole other level—but it started with her influence.

She taught me many things about moderation (“You need to know your limits”), decorum (“What will the neighbors think?”) and manners (“You will address adults as Mr. & Mrs”). Some of her teachings played out as I raised my children and still echo in my head today as I move away from that gorgeous Coach bag—I need to know my limits.

None of us are who we are alone – Thanks Mom – Happy Birthday - I love you

What Are You Grateful For?

We're coming into the season. You know. The season of being grateful, brotherly love and shop until you drop.
This is my favorite time of the year. Somehow I find a way to rise above the mass marketing shouting at me at every turn and then burrow below to find the joy I felt as a little girl.
I loved the family gathering at Thanksgiving--all of the special dishes my mother made so well, the kisses and hugs from my cousins, aunts and uncles, the Macy's parade. And all of this as a prelude to my favorite time of the year, Christmas. Well, more on Christmas in a blog to come. Today I am grateful.
I washed my windows yesterday and as I was doing that, I thought of my mother. She always washed her windows before Thanksgiving and put up fresh curtains. The house was cleaned from top to bottom--everything sparkled.
She can't do that anymore and I'm not even sure she remembers Thanksgiving is coming, but I am going home for Thanksgiving anyway. Even though today she is not the mother I remember, I am grateful for the mother that she was. She taught me all that I know about being a good person. She taught me all that I know about being a loving mother and wife. She taught me all that I know about being compasionate and helpful to others. And for that, I am grateful.
Happy Thanksgiving to you and yours.

Are You In There, Mom?

I read a great book recently. It was entitled Dancing With Rose: Finding Life in the world of Alzheimer’s—One Daughters Hopeful Story by Lauren Kessler.

Lauren’s mom died from complications of Alzheimer’s. In trying to make peace with her mother’s death, Lauren went to work in an Alzheimer’s inpatient care facility and wrote about the residents’ lives, the workers lives and the hope that springs eternal—even in the face of such a devastating disease.

The book introduced us to Rose, one of the more highly demented residents—Rose went from neighborhood to neighborhood moving residents’ items from room to room—She shuffled, did not make eye contact and was (according to Lauren) “hard to love”. Lauren found a way into Rose’s world by noticing that she kept beat to music—One day, Lauren stood up and started waltzing with Rose—that was a way into her world. Marianne used to be an administrator and still dressed each day for the office and sat outside of her room in her business suit waiting to interview prospective employees—Lauren became a perspective employee and sat through interview after interview. There are other residents and other stories but the recurring theme? Finding a way to communicate with Alzheimer’s patients—on their terms.

What a wonderful book as it helped me to celebrate my mother’s life rather than continuing to focus on what she has become. Somehow or other, these residents (not patients) were being given a life that was comfortable for them. They were able to keep some semblance of dignity even when the most elementary functions had to be performed for them. They had moments of clarity and joy, a staff that cared about them (most of the time) and family members that visited (some more than others).

Sometimes I think the sadness that I feel is all about me and how I feel watching my mother go down this path. When I’m having a good day, I’m happy that my mother is not struggling with what’s happening to her as she did in the early days of this disease—when she thrashed about trying to remember things and cover up things she didn’t remember. When she thought we were scheming against her. When she watched us—not trusting. Luckily, she’s past most of that now. She still wants to go home and talks about that constantly. Her memories are in Hollis, Queens during happier times for her. We try to show her that she is home—pointing out familiar things in her apartment that wouldn’t be there if this was not her home. Then we give up and just distract her—sometimes it works—sometimes she just forgets about it.

The message from this book and my challenge? To find a way into my mother’s world—not to force her back into mine.

Something Else For Mom To Focus On

How to write about the veil of Alzheimer’s that’s appears to be enshrouding my mother, disguising here as a shrunken, glassy-eyed, remnant of the vibrant, funny, independent, and fierce woman that she used to be? How to write about the hope that flashes when, all of a sudden the veil lifts and she makes a joke and gives you that mischievous smile she used to be so good at—Then the veil comes crashing down and she becomes that shell again.

I bought her a baby doll the last time I came to visit. I read somewhere that “baby doll therapy” is good for Alzheimer’s patients. It gives them something to care for, something to focus on, something to carry around with them. I thought it would be more stimulating than sitting in front of the TV.

I ordered her baby doll from the Alzheimer’s Store—a website chock full of items to make an Alzheimer’s patient’s life a bit easier. After a few days, the package arrived. I opened it in front of her. Out of the box came a beautiful, brown, baby boy with curly hair and his finger in his mouth. He felt almost like a real baby. My mother looked at the doll with skepticism—almost as if she didn’t trust it. “Mom, here’s your new baby doll”. “What do you think of him?” No answer—just a look that now has turned inquisitive. “Well, I’ll just leave him sitting right here on the couch, Mom”. No answer.

The rest of the visit was spent with me trying to engage my mom in conversation. I did her nails for her. She smiled and held up her hands to see for herself when I said they looked pretty. I left when it looked like she was getting tired. My trip ended and I went back home.

A few days later my sister called. “You would not believe mom and that baby doll”, she said. “She’s not taking to it, huh?” my response. “Not taking to it”, my sister replied. “She takes it everywhere in the apartment with her—She loves that doll.” When I asked her how she liked the doll she said “He’s great—he’s no trouble¬¬—he doesn’t cry much—he doesn’t do much either—just sits there.” I gave that huge belly laugh of joy that I give when something is so absolutely funny to me—I can’t stand it. There is precious little to laugh at in my mom’s life these days---Each one counts.

Where Is My Mother?

Mom is getting more combative of late. She is not sleeping—walking the floor at night and sometimes her aide is startled awake to find my mother at the foot of her bed—fully dressed and ready to go. Either she’s going to work, going to Brooklyn (where her mother, brother and sister-in-law once lived, or she’s just looking for her mother).

We worry that the aides will not be able to handle her anymore and that we will be without people to stay with her 24/7. Then what? We don’t even want to think about it. One of the aides is frightened of my mother and so we’ve cut her workload down to 1 day. She is good companionship—just not a leader.

It’s funny, when we told the doctor that my mother was getting unruly, she automatically suggested a drug to calm her down. We brushed this off right away. “She’s taking way too much medication already—we’ll try to work this out.” The doctor gave us a “suit yourself” shrug and moved on to the next topic. A month later we were ready to try the drugs. Guess the idea had to grow on us. Funny how things change over time...

Last week my sister called to check in. She said Mom’s medical doctor had called to report that Mom’s potassium level was too high and that she’d need to be restricted to no more than 2 bananas a week. Oh, Oh….this is going to be yet another fight. She loves bananas and eats a couple a day, but somehow one of her medications is raising her potassium level so the bananas (which are a good source of potassium) have to go.

My sister called my mother to tell her that she had to cut her banana intake
My mother listened and then after a long sigh said “OK, that’s it!!! I’m getting my own place.” “You’re in your own place, Mom”, my sister said. “I am?” said my mother in wonderment.

Gosh, I wonder where she thinks she is?

Thanksgiving With Mom

I lost it over the Thanksgiving holiday and had a yelling match with my mother. You'd think I'd know better. You'd think I'd remember that she's not the mother I remember. I write about this all of the time and when I'm in my sane mind, I do remember. Well, guess I was not sane on that day.
The conversation started out normally--fairly benign. Before I knew it, she was yelling at me for not telling her something or other. The yelling was no problem, I'm used to that. But then the tables really turned. She looked me dead in the eyes and called me stupid! I should have seen it in her eyes that she was no longer really talking to me. She was yelling about her circumstances. She was angry about not being able to remember simple things. She was distraught about not being able to care for herself anymore. She was upset because it was Thanksgiving and she didn't know it. She was just angry....
And I? I fell right into the hole and started yelling back. I said I yelled at her because she called me stupid. Was that the real reason? I don't think so. I was yelling because she was not the mother I remembered. I was angry because I could not have the wonderful conversations with her that we used to have. I was distraught because she threw away a beautiful family picture quilt I had made for her--an heirloom. I was upset because I absolutely hate that she has Alzheimer's. I was just angry.
I left her apartment in a huff and did not go back for a few days. She never missed me and forgot about the fight probably before I'd taken the elevator down from the third to the first floor.
She doesn't remember, but I do. I feel guilty at myself for yelling back and hurt because I now take my place along with many others in her life--as someone who can be forgotten in the blink of an eye. No she hasn't forgotten me completely, but in that blink of an eye when she forget who I was, I got a glimpse of what it will be like and it will not be pretty.
So, I returned home from that Thanksgiving trip very much changed. A warm place in my heart has gone cold. Now I really miss my mother.

My Mother's Retiring

I had a good belly laugh yesterday. I was talking to my sister and, as always happens, the subject turned to our 96-year-old mother. As you might know from earlier posts, my mother is suffering from Alzheimer's and there are many challenges associated with this but sometimes my sister and I get to laugh at some of the funny things Mom says. I like to document these things because when I feel like crying because of the ravages of this disease, it helps to think about the lighter side.
My mother goes to an Alzheimer's day care facility. She goes 2-3 times a week and she thinks she's going to work. We don't correct her.
One day several months ago, she said she didn't want to work at the Alzheimer's day care center anymore. I asked her why. She answered: "Because they don't pay me and I'm not going to work for free". It was all I could do to keep from laughing, but I managed to hold a straight face. I explained to her that it was a volunteer job and that they really needed her to be there and would miss her if she didn't come. That seemed to do the trick. That explanation was better than my first thought--which was to print phoney checks and give them to her every week. My sister said it would be just our luck that she'd try to cash them.
Anyhow, we'd heard nothing more about my mother not wanting to work for months. Then yesterday my sister said that my mother was wanting to quit again. I asked her why. She said, Mom said: "I'm tired of working. All of my children have retired. Why should I be working?" I just burst out laughing.
In this process that has precious little to laugh at, there is some blue sky.

I Miss My Mom - Will I End Up Like Her?

I’ve been living on memories lately. Looking for her in stories from the past. Used to be I’d call her every Friday. Oh, how I looked forward to those calls. We’d talk about so many things. We’d talk about family and current events and she’d tell me stories about her past. I’d heard them all before but I never tired of hearing them again. They were rich with the experiences and vitality that comes from a life well lived.

Today is different. The depth has gone out of her conversations along with her memories. When did this begin? I used to laugh when she said she was having a difficult time calling me on the telephone. She’d say that “a man keeps answering”. I would confuse this with my answering machine and just encourage her to take her time dialing. Or she’d actually get through and when it came time to leave a message, all I’d hear is “Hello” “Hello” “Oh, I hate these machines” and then a loud hang up…She was definitely one to hang up if she was frustrated.

Today she’ll ask me several times where my children are…she seems to remember their names but not that they are 37 and 33 years old. When I remind her that my son (her grandson) has 2 children of his own she acts as if she remembers that but in the next breath she’ll ask me something related to his day care provider.

She asks the same questions minutes apart and she asks for people who have died a long time ago, my sister (her first child) who died in 2003. Her brother (my favorite uncle) died many years before that. When I tell her that they have passed, she says “Oh”, with a sad voice and shakes her head. Then she asks me the same questions 10 minutes later. She gets dressed and says that she’s going home. I remind her that she is home. She gets angry because “we” sold the house and didn’t tell her we were doing that. She’s angry about the way it was done. No amount of telling her that she sold the home herself will console her. She’ll never trust us again. She gets angry because we treat her like a child. It’s our fault that she has to have 24/7 aides staying with her. She hates that…she is not a baby. I remind her that she wandered from a hospital and that’s why she has to have 24/7 care. She tells me that she did not wander, she just left. I tell her again (how many times we’ve gone over this I’ve lost count) that you cannot leave a hospital without signing out; that you cannot put your clothes on and leave by a back entrance. She does not remember that.

I wonder what she’s thinking sometimes. She was just sitting in her chair one evening looking down at her feet. She was moving them around. I asked her “What are you doing, Mom?” “Dancing my feet”, she said.

Sometimes she can ask great questions. Like the time she was sitting very quietly and all of a sudden asked me “What place would you like to visit that you’ve never visited before?” “Alaska”, I answered with excitement in my voice. Maybe we could have a short conversation before she slipped away again. A window of opportunity. “Where would you like to visit that you’ve never visited before, Mom?” “South Carolina”, she answered. She was born in Yamesee, South Carolina and lived there until she was 8 or 9 years old. Window closed.

When she gets mean and cantankerous, I remind myself that it is the disease talking, not my mother. My mother has always been fiercely independent, but never mean. She is under the spell of this awful disease called Alzheimer’s.

Alzheimer’s is a dreadful disease. I don’t know who it’s more difficult for, the patient or the family. The family I think.
Sometimes I get really frightened and wonder if I will end up with Alzheimer’s like my mom and her brother before her. The fear stops just short of engulfing me, I get up and get busy. Reading a book, doing a puzzle, doing yoga—anything is better than just sitting there.