"This is the Bread of Affliction"

The Haggadah tells us that matzo is the bread of affliction since it reminds us of the hurried way the Jews needed to leave their days of slavery in Egypt.  Of course, the argument could be made that it is also the bread of freedom, since the Jews ate it as they fled their bondage.

Yesterday I attended the Seder at the nursing home.  The tables were set with flowers and lovely table linens as a Cantor led the luncheon.  It should have been a wonderful time for me to share with my mother and uncle-- a way to connect and celebrate yet another holiday the way we have done all my life.  Unfortunately that wasn't the way it went.  Mom was very grouchy and not feeling well.  She was angry about her seat, angry because her hearing aids are still not ready from the audiologist, and angry because she felt rushed even though she got up and ate breakfast at 11:00 AM.  My uncle was very tired and unable to hear the Cantor.  So, they both slept through most of the meal and complained for the other parts of the time.  There was absolutely no way to make them happy though I did try-- I really did. This meal was nothing like the loving times we've spent together on holidays in the past!

I just read an article that states that people with dementia are possibly angels sent by G-d to remind us of the fragile balance of our lives.  The angels are freed of filters that stand in the way of spirituality and acceptance of G-d's will.  If this is true, then there were so many angels at the Seder yesterday! The frustration the Cantor felt for the inattentiveness of his audience and my own feelings of loss should be tempered then, by the understanding that we needed to be in the presence of these angels for a reason only G-d understands. I truly hope the article is right.  Otherwise I can't find a single reason to attend next year.  Mom didn't remember that I was there and my uncle missed most of the time anyway.

So, yesterday the matzo represented affliction.  The affliction of old age, dementia and failing health. But,  it also represented the freedom that will some day come to those angels in attendance.  For the rest of us, it was the bread of ancient ritual and tradition still shared with treasured family members.

A Life on DVD

A graduate student spent months interviewing my uncle for a project about bridging generations.  She became so attached to him that she extended the project and gave countless hours to interviewing him and videotaping his responses.  All of this culminated in a loving tribute-- a DVD of Frank's life that was presented at the nursing home yesterday.

We were invited to the event and Mom and Frank just drank in the walk down memory lane as pictures and interviewed clips flashed on the screen.  Of course, true to my uncle's personality there were "embellishments" on his life--specifically, his description of his bomber missions during World War II.  He was NEVER A PILOT--truth be told, he gets sick on an airplane, and spent all of his time in the service behind a desk in Kansas and Tallahassee, Florida. He even elaborated, and claimed on camera that his tiger eye ring was a gift from the Queen of England for extraordinary service, instead of an anniversary gift from my aunt!  I guess he felt the need to change an ordinary life into an extraordinary life.  That being said, it was still wonderful to hear him lovingly describe his life ( and my mother's) as they grew up.  It was touching to see pictures of him as I remember him from my childhood and to also see my grandparents as young people.  Mom was especially touched by seeing these pictures and listening to Frank's answers to Linda's questions about the past.  I truly believe that she remembered many of the events as he spoke of them, if only for a brief moment.

We expected to just endure a tiresome showing of this project.  However, I couldn't have been more wrong.  I will cherish the time that I was able to share this with Mom and Uncle and I look forward to getting a copy of the DVD so I can review it in the future. Well done, Linda--you truly bridged the generations!

Looking at a New Year

Today is the last day of 2012 and people get sappy about the year that has gone by while they make resolutions that frequently are not kept.  I will avoid all of that.  I will revel in the fact that my mother still knows who I am when I visit.  I will take note of the happiness I see on her face when she asks me about our family--though she asks it over and over again in a single fifteen minute time period. I will hope that the new year finds me able to continue to visit and bring news of the outside world to my mother and my uncle.  Finally, I will think about the years that my mother and father lovingly cuddled on the couch as they watched Guy Lombardo on New Year's Eves.  Their total devotion to each other and lasting love is what I hang on to.  It is not something that "should be forgot" as Auld Lang Syne says, but rather, it is what gives me hope of a good New Year for our family.  I believe that somewhere in the tangled neurons of Mom's brain she still basks in that love that sustained her and gave meaning to all of our lives.
Happy New Year!

Feliz Cumpleanos/ Yom Huledet Same'ach

Happy Birthday, Mom!

Yesterday was my mother's 88th birthday and to hear her tell it, she's now officially "a really old bag".
Her sense of humor was intact and her attentiveness was better than many other days so I guess we were in a win, win situation.  We celebrated the way we've done for the last few years--Larry and I brought lunch to be eaten in the nursing home's conference room, we sang "happy birthday", ate cake and opened a present or two.

I know that Mom didn't remember that it was her birthday...though she did recall the date of her birthday a few weeks ago.  She seemed to be having a good time and was especially happy that her special friend, Stanley was there for the cake and the singing.  I am quite certain that she forgot the entire event shortly after we left, but we now dwell in the moment.  I look for happiness in her eyes and try to take satisfaction in  successfully marking a special day in her life and sharing the moment.

My problems come from the times that I remember.  I remember when my Dad would discreetly hand me money so I could purchase something nice for Mom since, in those days, the stores weren't open when he was off from work. I remember the entire family gathering for each of our birthdays.  The feeling of warmth and love was always there, and I wish I had realized just how lucky we all were to have that when I was growing up. I mostly remember that the special glow of celebrating a birthday with those who love you would linger for many days afterwards.  I mourn the fact that Mom no longer basks in that glow.  She lives in the moment and for the moment.  Remembrances of birthdays celebrated in the past are no longer held dear and she quickly moves to the next moment.  So this is the reality we now share.  Happy 88th Birthday, Mom!

The Day I Stole Mom's Car

Having a parent with dementia can be depressing and painful, but this one day, it yielded embarrassment and even a little comic relief.  While my uncle was in the hospital, my mother was very upset--she wandered the halls of the nursing home looking for him.  She was moody and upset.  Although I called and visited her during this time I could never have anticipated the phone call that came while my uncle was still hospitalized.

The floor nurse, Marcia called me while I was shopping for a few things to bring to mom.  She explained that Mom was crying in her room and needed to hear my voice.  I was completely prepared for the crying and need for reassurance.  I was not, however, prepared to get on the phone and hear Mom screaming at me.  This is how a lot of the conversation went:
Mom: I hope you're satisfied.  You dropped me off in this awful place without paying attention to what I need.  I hope you're happy. Why did you steal my car?  I have a lot to do today and now I can't get it done because you stole my car.
Me: I didn't steal your car--you sold your car 10 years ago because you were having trouble seeing when you drove.  What would you like to get done today?
Mom:  I have errands to do-- I should have driven you to work and then taken the car to get everything done.  But NO! You didn't care at all about me, instead, you selfishly took the car and now I'm out of luck--what kind of caring daughter do you think you are?
Me: Mom, I didn't steal your car.  I have my car.  What can I get done for you to help you out?
Mom(yelling): Why should I have you do anything for me?  You're selfish and only thinking of yourself.  Come and pick me up NOW, and then I'll be able to use my own car. I should have driven you to work instead of doing things your way, which stinks for me.  Now, I'm out of luck!
Me (trying to remain calm, while other shoppers in the store are looking at me suspiciously, probably believing that I actually DID steal Mom's car): I'm afraid I can't come right now, but if you tell me what you need, I'll get it for you and see you soon.

This same conversation played over and over for half and hour while I sat in the shoe department of the store.  I finally told Mom I had to go and asked her to hang up.  She wouldn't, and kept haranguing me, so I reluctantly hung up and then called the floor nurse back to explain.  She apologized for "setting me up" and told me she would try to calm Mom down.  I then called the social worker to ask for her assistance.  I left the store in tears, realizing that Mom wouldn't remember any part of our conversation within ten minutes, but it would haunt me for several days to come.

So, the day that I stole Mom's car can now be re-told for comic relief.  It is a little funny, but not really!

The Newer Normal

After all of my efforts with Verizon and the frustration of 411 calls one would think that it's a relief to have silence from Mom's phone. Yet, this is not really true.  Of course I hated, and wrote incessantly about, all the anxious and ill-timed phone calls Mom was making, but I also had a connection to her that I now lack.  In order to speak to her now she needs be brought to the nurse's telephone.  The last time I did this, Mom fell because she was in a hurry to get to the phone.  Luckily she wasn't hurt but I see this as all part of the constant changes that are never for the better.

As a nursery school/primary grade teacher one of the rewards was knowing that children change almost daily.  Something that is difficult for them one day, becomes the next day's accomplishment.  Annoying behaviors are often outgrown, and independence with new tasks happens throughout the school year.  I always loved that!  So, I am having a terrible time learning the changes that occur in Mom.  She is not gaining independence or skill or finding life less difficult.  Instead, each change erases more and more of the person who I knew for over 60 years.  I know she finds it frustrating and depressing, as do I.
The blessing for her is that due to her mental changes she no longer really remembers all that she once was able to do. My problem is that I have a really good memory ( at least for now).  I miss the essence of my mother and truth be told I even miss the phone calls--they were a shred of the bond we've shared and they seem to be slipping away.

The newer normal is not one that will prevail for very long.  I've learned that just as my preschoolers changed daily, so does my mother.  The newer normal is not one that I relish.  Not one that I anticipate will pleasure as I did with my students.  The newer normal is one that brings pain and frustration that demands more and more of my forbearance and more and more dependence for Mom.  The newer normal is just the newer challenge for both of us.

Let's Play Telephone

The phone bill from Mom's room has been creeping upward to astronomical amounts each month.  It seems that Mom still remembers how to dial 411 for directory assistance and connection to make her calls. She's been using 411 about 25 times each month and it's costing a small fortune.  

After several frustrating calls to Verizon I thought I had succeeded in getting 411 blocked on her phone.  That was until I actually tried to use 411 from her phone, and it connected!  I made a new set of phone calls to Verizon and found out that you can't completely depend on a blocked 411. ( I tried to explain to the agent that either something is blocked, or not, but apparently this simple idea escapes the geniuses who run Verizon--but I digress). I was finally referred to the representative who handles special services to Verizon customers with disabilities. She explained that Mom could have unlimited access to 411 if her doctor attests to her legal blindness as her disability.  Wow! this is what we need, I thought.

I brought the Verizon form to Mom's nursing home doctor.  The same doctor who's been treating her, and seeing her EVERY DAY for 2 1/2 years!  Her response: "What is your mother's disability?"
I explained that she has macular degeneration and is legally blind.  Her response: "I didn't know that!"
I'm still in shock that this doctor could be so blind, herself.  Every nurse and aid on Mom's floor know that Mom is blind! Mom talks about it about 300 times each day and has difficulty recognizing faces so for this doctor to be unaware of this, scares me.  I left the Verizon form with the nurse for the doctor to consider signing and will follow up in a few days.

In the meantime, Mom has stopped calling here--verification that she was using 411 and perhaps the service is actually blocked as I hoped.  Mom has also stopped ANSWERING the phone!
So, even though I will pursue the disability form, and will hope that the house doctor finally knows my mother's disability, all of this may be in vain.  For if Mom stops using the phone, and forgets how to do it, I may have to just give up and pull the phone from her room.  HELP!