Change by Rina Dabramo

Nothing or no one escapes change. It is the one constant in our lives.

I wrote about my sister putting her legs through the arms of her shirt when dressing. She cannot dress herself at all now.

I wrote about her singing at events when silence was appropriate.  She now has no words.

I wrote about her pushing the shopping cart into the parking lot and putting our groceries into someone else’s car. She can no longer push a grocery cart.

I wrote about how I needed to serve her soft foods that were easy to swallow. Now I must feed her like a baby.

Last evening I opened the box that was delivered over a week ago. I have been putting it off because of the change it represented. As I looked at the wheel chair, it was evident how much she changed in a short span of time.

I guess the only thing that does not change is the love of a sister.

What's In It For Me? by Rina Dabramo

During the time I care for my sister I will:

Help her in the bathroom and make sure she uses soap when washing her hands.

Help her dress so that she does not put her legs in the sleeves of her shirt, and shoes on the wrong feet, or her PJ’s over her clothes.

Try to put make-up on her because I know how important that was for her before, and reach in her mouth to pull out the lipstick that she just bit off. Tweeze those few stray hairs that appeared on her chin because I know she would be horrified if she knew.

Prepare foods that are easy for her to swallow. Pull the food out of her mouth that I thought she could swallow but could not.

Try my hardest to get her to spit out the toothpaste after she brushes her teeth. Clean the floor when she realizes that until she spits it out, she cannot eat.

Make sure she always sits in the back seat of the car with the child lock doors so she does not try to get out at every red light.

Watch her like a 3 year old so she does not try to drink cleaning liquids from bottles, or put colored thumb tacks into her mouth thinking they are candy.

Make sure cars in driveway are locked or windows are down because she likes to sit in cars in anticipation of going somewhere.

What do I get from all my efforts? She cannot say “Thank You”, she cannot hug or show affection other than an occasional kiss when she is leaving.

I get the most important lesson anyone could get. The lesson of patience, understanding (even though many times I am not), compassion, and the realization that nothing is for sure and enjoy the moment you are in because things can change ever so quickly.

Maybe this is what is called the Lesson of Love?

I guess I am the lucky one.

A Hug by Rina Dabramo

I have come to the realization that I am expecting too much of my sister. I want her to hurry when time is short. I expect her to eat when I am hungry. I want her to sleep when I am tired. I want her to wake up and get ready when we have to be somewhere. When does she get to do what she wants to do? Does she even know what she wants to do? Today, as she was eating breakfast, I was rushing her. She wanted to linger and enjoy the cup of coffee I gave her but we had to be somewhere.  I put her coffee down and tried to move her along. She looked confused and stared at me. I put my arms on her shoulders, looked her straight in the eyes, and slowly asked her, “Do you even know who I am? Do you know me?” She stared at me and tears were streaming down her face. I hugged her. It was the first time that I hugged her in a long time. I give her a kiss on the check every time I put her to bed, but I don’t remember the last time that I tried to hug her. She could not hug me back. It was an unfamiliar gesture to her. Years ago she was very affectionate, and always greeted you with a hug and a kiss. Now it is foreign to her. This could be the cruelest part of this disease.

All You Have To Do Is Dream by Rina Dabramo

I often check up on my sister while she is sleeping and wonder if she is dreaming. And if she is, what is she dreaming? Is she normal in her dreams? Does she have a full vocabulary in her dreams? Sometimes when she wakes she stays in bed and just stares at the ceiling. Sometimes she puts her hands out and moves them. Is she thinking, “Why did this happen to me?” or “I don’t want to be this way?”

Every once in a while I see stress on her face, and tears start to stream down her cheeks.

My brother, who had ALS and died in August 2014, told me he always appeared normal in his dreams. And he hated waking up because the harsh reality was that he could not even get out of bed on his own.

This is part of a song that he wrote that was played at his funeral. I wonder if this could apply to my sister?

“In my dreams I run so fast, like a deer on a forest path.

 Jumping streams and climbing mountains, in the sun I feel the breeze, every move is done with ease. I’m so free in my dreams.

  I am finally free, not waking from my dreams.”

 

Will death be her only freedom?

Finding Humor Every Day by Rina Dabramo

Waiting for my sister to wake up and come down for breakfast is always a bit stressful for me. She does not let me know she is up, and showers and dresses herself before coming down. The stress is that she has no concept of clean vs. used clothing, or even disposable undergarments. No further explanation is needed. For this reason, I listen intently for movement in her upstairs bedroom so that I can remove and launder her sheets and pajamas, and properly dispose of her used undergarments before she hangs them all in the closet.

After I hear the shower stop, I wait about 20 minutes to make sure she is dressing properly. I lay her clothes out in order of how they should be put on, and this seems to work. The article on top was a long, soft material shirt with a big cowl neck that would go over a tighter fitting top. She decided to put the cowl neck shirt over the pants I put out. Her legs were in the armholes and her body extended from the neckline. After laughing, I tried to remove it from her to show her that it was a shirt. This is always a struggle and she is very strong, but I am just a bit stronger and succeeded.

As she was eating breakfast, in an effort to get rid of a song that has been in my head for 3 days non-stop, I put on a beautiful Puccini opera CD. I think it was the one that Julia Roberts went to see in Pretty Woman that brought her to tears as it did me.

I decided to put on a show for my sister, and there I was pretending to sing this very moving aria, complete in my jammies (no bra), hair looking like a well-worn toilet brush, and my arms extended. She roared with laughter. Who else could I have done this for? It’s like being naked in front of the family pet. They don’t care and they won’t tell or even remember.

SUMMARY: No matter how bad things seem or how stressed you get, try to find just a moment of humor each day. 

The Golden Rule by Rina Dabramo

I remember being in high school and my sister was always so fashion conscious. She had to have the best of everything.  She would save so that she could buy Chanel “Coco” perfume. Pretty impressive for a 17 year old. Most girls her age were reading Teen magazine and she was reading Vogue and Bazaar.  She and I were only 1 ½ years apart and I wanted to be just like my older sister.

This evening as I helped her get ready for bed, I had to stop her from using her toothbrush with paste on it, on her face and neck. I grabbed it from her hand and she looked at me with confusion as if to say, “Why can’t you just let me do what I want to do?” I really don’t know why I can’t. It would be so much easier for me to just allow her to do what she thinks is right. Earlier, I tried to tweeze a few hairs from her chin. She fought me and I let it go. If she didn’t have dementia, these would not be issues at all. The bottom line is that I want her to look the way that I know she would want to look if she wasn’t suffering from “D”.

Who am I doing this for? Her or me? I guess I am not sure.

She finally put the toothbrush and paste in her mouth and brushed her teeth. She would not rinse and I let it go. I helped her get on her night time undergarment, and added 2 extra pads in hopes that the sheets would be dry in the morning, and maybe I would not have to totally change the entire bed. I decided that this was a selfish thought on my part, and that wearing all that has to feel uncomfortable. I removed the extra padding and she seemed relieved.

SUMMARY: "They" say, "Treat others the way you want to be treated," but I think it should be "Treat others the way THEY want to be treated." I will try this with my sister.

Keeping It Real by Rina Dabramo

Every person who suffers from dementia is different for sure. There is no “cookie cutter” way they behave or progress through this rough journey.

I can only share my experiences as a sister of a frontal lobe dementia victim.

These are some of the stages she went through:

 Personality change:

She displayed this for years without us even being suspicious that she had dementia. Not having experience with dementia, I was unaware that this could be symptom. I just thought it was the usual menopause craziness!!!

Paranoia:

Gloria accused me of changing her passwords on her email accounts, when in fact she could not remember the passwords and would be locked out. Friends stopped emailing her because she was not making sense. Only a few loyal friends remained, and they were wonderful.

Becoming Delusional:

Gloria was convinced that her room was infected with bugs. She taped every air vent and opening with duct tape to not allow the bugs in. This was when she was still walking to the stores, and bought several cans of Raid per week to kill the bugs. She showed me all the marks on her body that were “bug bites”. I took her to a dermatologist to put her mind at ease that the little marks on her body were normal for a woman her age. The doctor told me that she had the skin of a much younger woman (every younger sister wants to hear that comment from a dermatologist….right?) and no bites were visible. Her skin was (and still is) flawless. The Raid continued and we searched her room every time she was out to find the Raid, but she continued to buy more and hid them like a teenager would hide drugs.

Change in personal appearance:

This was really hard to watch. Gloria had a flair for fashion, and could go through a bag that I had out for Good Will and make stunning outfits for herself from its contents with a little help from belts, jewelry and accessories.
She always looked amazing. After about 2 years into the disease her appearance changed. She wore bizarre articles of clothing and layers upon layers. At times she would have 3 pairs of pants on. And sometimes pj’s as the first layer! I was embarrassed for her. Now I realize that was very selfish of me. Again, I was not in touch with what she wanted. Or should I say, what her brain told her she wanted. I just wanted her to continue to look good and now that she is not fighting me on this, I have control of what she wears and she looks better. I do always consider comfort as a priority.

Unaware of appropriate behavior:

This is also a tough one. Gloria would walk down the street (she no longer is left alone to go anywhere) and just wave to passing cars. As you might suspect, some stopped to see if she needed help. At this point in her life, she just wanted a ride to the airport to go back to the life she loved and continue her acting career. How fortunate she and we were that she never came across that one “wrong” person.

She wanted to kiss every baby she saw when she was out. (Not accepted these days.) 

People who suffer from frontal lobe dementia will lose their language skills and Gloria’s were going quickly. It is extremely hard to watch this in someone you love. At this time she is down to about 8 words, and she says them over and over for every circumstance in her life. I wonder what they mean to her? I think they mean everything to her. She uses them when she sees someone new, when she tries to order food at a restaurant and (I suspect) when she wants to tell you how much she appreciates what you are doing for her and how much she loves you. We just have to figure it out and apply as needed.

SUMMARY: Don’t underestimate what a person with dementia is feeling. It’s real.

 

 

Wine Anyone? by Rina Dabramo

Gloria loves to go grocery shopping and when we pull into the parking lot, she just lights up. She is smiling as we enter the store, and when I pull out a cart for her to push, she is gleaming and laughing. Go figure! For some reason, as we walk through the store, she keeps her distance, pushing the cart behind me.  So most of the time as I am taking things off the shelves, I am backtracking to put them in the cart.  I must say that she does have very good shopping etiquette, and is always mindful of other people. I just wish she would stay closer to me as I shop. This one day (as I was rushing I’m sure,) I looked behind me and she was not there. I did not panic as I thought, “How far can she have gone?”  I looked down the previous aisle, and the one before that. No Gloria. OK, now it was time to panic. I walked very quickly down every aisle and then repeated the process. No Gloria. She does not know enough to find the restroom on her own. I considered going to customer service and asking them to announce on the sound system that I was missing my sister who has dementia, and would everyone please look around for a woman in her 60’s with grey hair wearing a black coat, pushing a cart full of groceries. On my way over to customer service I noticed that one third of the women shopping had grey hair, were wearing a black coat, and were pushing a cart of groceries. Plan B. I went outside to where I always park my car to see if she was there. OK, plan C. Just then I noticed a commotion on the other side of the parking lot. There was Gloria loading all of our (not paid for) groceries into someone else’s trunk as this person was attempting to load her own groceries. So there was the scene. A woman who was almost done loading her (paid for) groceries into her trunk, and my sister, who was throwing in a gallon of milk, several bottles of wine, (can you blame me?) fresh fruit, vegetables, etc., etc. into her trunk as well. When I approached the car the woman asked me if I knew who she was and when I said, “Oh yes,” she seemed relieved. She had no idea why my sister was behaving this way, and she didn’t know what to do. Well, I gathered my groceries (wine first….do you blame me?) and headed back into the store to get in line and make an honest person of my sister.

SUMMARY: Don’t let anyone else handle your wine.

A Song In Your Heart by Rina Dabramo

As I have said in previous blogs, my sister Gloria is down to about six words now and she uses them for everything. Every emotion, every command, every need, every want. It is all she knows now.

It sounds like “swi swi swi over here now”  followed by (singing in a jazzy tune) “yeah, yeah, yeaaaah” and then a laugh.  The last “yeah” goes on for quite a while and I have to give her credit: she can still carry a tune.

This is what she does and it is the only way she can communicate now and Gloria’s family, friends and caregivers acknowledge and accept this. As they say “it is what it is.”

My daughter-in-law belongs to a ukulele group and we enjoy going to locations to hear them perform. They really are quite entertaining. Gloria loves music and I have taken her several times to see them perform.

The last time it was at the library and they performed with 4th grade children who were learning to play the ukulele. I have to say it was very beautiful to see these 10 and 11 year olds playing this ancient instrument. They played old tunes by the Beatles and Neil Diamond and the show was outstanding!

The library was packed. I sat one row in front of my brother and Gloria and often looked behind to make sure all was well and she was enjoying the music. She knew exactly when to applaud but when the applause was over and during that five second silence between end of applause and the next song, Gloria clearly and LOUDLY sang “swi swi swi swimming over here now….yeah, yeah, yeaaaah.” It was exactly three “yeahs” with the last one lingering about 10 seconds and loud enough that my daughter-in-law on the stage said she could hear her as well.

As you can imagine she attracted attention doing this and never missed a beat. After about the 4th song, I finally had the nerve to look at her and smile and the man sitting next to her (who likely had no idea that she was my sister) looked at me and rolled his eyes. I am sure he was slightly annoyed, and felt that I was as well. He was wrong.

This was the turning point for me and my mission.

Maybe if Gloria had the “MindSet” T-shirt on, maybe people would not be annoyed. Maybe they would be alert to her invisible struggle and be able to view my sister through a lens of compassion and patience.

“Mindset” says:

Be happy that she can still get pleasure from music.

Understand that she does things in her own way.

Can I hear a “Yeah, Yeah, Yeaaaaah!”?

 

Acting everyday by Rina Dabramo

September 14, 2009

“Dear God, please help my brain feel better. I will not smoke any more, ever again. Dear God O Mine, I want to feel better and I am afraid. Please help me with my brain.”

Gloria was bargaining with God. If she stopped smoking, surely God would heal her brain.

This is from my sister’s notebook that she wrote in daily. It is hard for me to read because I always felt that she was unaware that anything was happening to her. She vehemently denied that anything was wrong. The emails and calls from her friends in LA continued. “Gloria must come home. She is having problems with her memory and she needs her family.” A dear friend of hers took her to a doctor and the diagnosis was frontal lobe dementia. FTD, as it is called in the family of Alzheimer’s disease, a family to which you don’t want to belong.

We told Gloria that she was needed here at home to help us care for a nephew who had Down’s syndrome and was experiencing kidney failure. Gloria would do anything for this nephew, surely she would come home to help care for him. Once she was home, we could assess the situation and decide what needed to be done.

It was worse than we imagined, and when our nephew passed away, Gloria decided that she would return to LA to continue her acting career. She had been there for years with moderate success, and wanted to return. The sad truth was that she could not get acting jobs because she could no longer remember her lines.  Several of her friends coordinated her move home by obtaining her medical records, packing and driving her home.  They notified the agent she was working with of her condition and kept the family up to date with daily emails.  Their actions were a true show of how Gloria was loved and there was no way to adequately show our appreciation to them. 

As I turn the pages in her notebook now, I see that she recorded everything she did on each day. Every movie she saw, every friend she visited, everything she purchased. She studied this book every evening. She was prepared to talk about her day as if to defy any suggestion of memory lapse.

SUMMARY: It may have been the greatest acting job of her career.

MindSet by Rina Dabramo

Today was the day. Today I would march right into the grocery store with my sister who suffers from dementia, and cash out in the lane of the cashier who just 2 months ago was so rude and insensitive to her. I had explained that my sister has dementia and that she just has her own way of doing things. “Please let her do what she wants, she has dementia.”  I did not think that I was asking for much. Just let her rearrange the groceries and put them into bags wherever she thinks they belong. Just a few minutes and we will be out of your line. She raised her voice to my sister saying, “This is not the way it is done.” and threw the receipt to me as if to say, “Get the hell out of here.” Maybe the clerk had a bad day, but my sister has had a bad day every day for about 6 years now. I was so upset by this that as soon as I got home, I wrote a letter to the manager explaining how she treated us. Of course I noted her nametag but I did not mention it in the letter. “This is a conversation you should have with all employees” I suggested. “Be kind and understanding when you notice someone who needs help.” I faxed the letter addressed to the store manager whose name was on the web site. I did not sign it or give my contact information. I vowed that I would never go back to that store.

But today, I did. I noticed her the minute we walked in. After shopping, there were two lines open, hers and that of another (at first glance) of an uncertain gender. The “uncertain gender” clerk was big and had breasts but also had a full moustache and deep voice. I decided to go into that line. It’s safe. And if it was a woman and she lives her life with a full moustache, she would understand diversity. She was wonderful and kind to my sister and me, as my sister proceeded to rearrange the groceries that she had carefully packed. I mentioned the dementia and she was OK. After all, she was a woman with a moustache. As hard as it was not to stare at it, I found myself doing so. I thanked her for her patience and she smiled at my sister. This is how it should be.  I am so tired of saying, “Please excuse my sister, she has dementia.” She is the one suffering, so why does she need to be excused? In her mind she is doing nothing wrong or unusual. “I am going to change this,” I thought to myself. Never again will I have to beg forgiveness or ask someone to “excuse my sister.” She deserves respect. She has dementia but she deserves respect.

SUMMARY:  I would rather have a moustache than dementia.

How can I begin to change the MINDSET of people?