3 am pictures

Posted on September 5, 2015 by - Uncategorized

Sometimes I picture some of the things my Mom had to go through when she was sick, and I get a pain in my chest. And that sometimes is often at this time, 3am. I think about her fear, pain, frustration, confusion, heartache, anger, embarrassment, longing. She was so strong, yet I can only imagine her internal strength fading away as her memory and ability to communicate did the same.

Mom was diagnosed with Lewy Body Dementia at the age of 61. She had symptoms, as we know now, for several years before her diagnosis. I don’t know how many years. Folks with dementia have the ability to hide or cover up some of the “signs”. She died at the age of 65 in December of 2012. That’s more than 2 and a half years ago. I think about her every day. As you do, when you lose loved ones so close to you. She was my best friend, you see. I talk to her now, I thank her for nice things that have happened to me…things I know she’s had a hand in. I tell her I love her and miss her. But sometimes, like at 3am, I see her as she was near the end of her life. I think at 2 and a half years out, those images should NOT be the first ones that pop into my mind. So…they can go away now. Please. Just get out. They are sad pictures. And I think I know why they’re still there.

When I was growing up, I was pretty self-involved. My Mom was very much a part of my life, but I thought about myself the majority of the time. That was until she got sick. When I left San Diego to go back East to be with her, I became hyper-focused on her, and everything that was happening…in her disease, in her care, all of it. I can see the first time I walked into her assisted living facility, and her shirt was on inside out. It was orange and had three buttons in the front. I recall the first time I found some sort of bread product in her purse, taken from a meal for “later”, I don’t know how many days ago. When she lost her speech, I would try to guess what she needed, and then act. I remember clearly the time I walked into her nursing home and she was rocking in her wheelchair, unable to speak, unable to tell anyone her foot was twisted under the pedal. How long had she been in pain? How many other times did things like that happen in the course of her disease? So many. Too many. I was with her when she died. It was peaceful, but it was ugly. My poor Momma. Breaks my heart.

I think the images in my head now are from when I was paying attention to Mom and her needs, and likes, and moods, and feelings. So, the lesson in all of this: Open your eyes now. See what’s happening with the ones you love. Hear them, watch them, share good and loving and special experiences with them. Take those moments, and pause, and revel in them. Let them fill you up. Be less annoyed. Call more. Visit more. Put aside differences with family members. See them as they are now. And store those pictures in your mind, not just on Facebook.

I share because I care. About you and your journey now or in the future, in this heartless, painful disease. If anything I write can make this process of caregiving just a tad easier for others, I will get up and write every day at 3am. I just hope next time, the image in my mind is of Mom smiling and welcoming me home with a glass of iced tea and cheese and crackers. Miss you Momma. #ENDALZ

Home for the Holidays…plus one

Posted on November 22, 2014 by - Uncategorized

It was Easter Sunday. A little less than a year after my Mother had been diagnosed with Lewy Body Dementia, at the age of 61. There were about 10 members of the family gathered around my Aunt’s dining room table. The mood was slightly less jovial than in previous years. It was a little, but not much quieter. It was all due to the fact that we had an extra at our table. Dementia was our plus one.

Instead of rushing in and out of the kitchen, initiating and taking part in the multiple conversations of the day, laughing or rolling her eyes at my Grandfather’s (her father’s) jokes, she just sat in her chair. It was at one point during the meal, when things were banging around in the adjacent kitchen, and two to three sets of people were having different conversations, and music was playing, and the dog was barking, that I realized this was entirely too much for her. She was shutting down. I followed her gaze and realized she was staring into space. She hadn’t taken a bite of food. She just wasn’t there. It was her way to cope, I learned later, with too much stimulation. It was too hard to follow, too hard to focus, so she went inside herself, and shut down.

The holidays are upon us. This time of celebration may not be as festive because of your unfortunate plus one. If you have a loved one with Alzheimer’s or another form of dementia, let me gift you some tips that may help. We’ll do it through the word GIVING.

G: Gather earlier. People with dementia tire easily. If you typically have a holiday dinner, make it a lunch. Your person will probably be more alert earlier in the day.

I: Involve your loved one in the process. She may not be able to whip the sweet potatoes and add the proper amount of butter and brown sugar, but she can probably put the marshmallows on top. She/he may not be able to set the table by putting the fork, spoon, cup, or napkin in the proper place, but in reality, does it matter if someone has two spoons? You can fix it later. She/he helped. It makes her feel good. Will she put the ornament where there are no others? Maybe instead she can hold the box on her lap and you can reminisce about the old ornaments. Their short term memories may be gone, but many of the longer term memories remain.

V: Visit one on one or two on one with your loved one with Dementia. It is a disease that affects processing. So one person looking her/him in the eye, asking a simple question or making a relatively simple statement, and waiting for a reaction, will be easier for them to process. Again, talk about the old times, sing old songs. Music is an amazing way to connect with those with memory issues.

I: Identify distractions. When the television is on, three children and running around the room, two brothers are having a spirited argument, and the lights on the tree are blinking, your loved one is going to want to go to another room and take a nap. It’s too much stimulation for someone who has trouble processing one thing. Reduce the distractions, make the environment calmer. This is the time to adjust your expectations and make new traditions. Your holiday isn’t being ruined, it’s changing. There is a plus one here now, you need to try to make them comfortable. (blinking lights cause confusion, perhaps it would be a good idea to switch to white lights that don’t blink.)

N: Never neglect yourself. Caregiving is hard. It’s the hardest job ever, I contend. This disease is an emotional roller coaster. Have others bring side dishes. Buy fewer presents. Attend fewer events. Breathe. Cry. Take a nap. Get a massage. Take time to pat yourself on the back, because you are doing the best you can.

and finally,

G: Give Thanks…for the time you have with your friends and family. For the moments you have with your loved one with dementia. Revel in those special times, and let them fill you up. You person with dementia is in there, I promise, just keep giving them love. They feel it.

This Thanksgiving will be our second without Mom. She died at 65, after just four years with Lewy Body. Our plus one is gone. I promise to sit at the table with my family, and be happy to be in their presence. And I know Mom with be with us.

Hang in there. #ENDALZ

They Wander

Posted on October 9, 2014 by - Uncategorized

It’s not a matter of if, it’s a matter of when. People with Dementia will wander. According to the Alzheimer’s Association, 6 out of 10 people with Dementia will wander at some point. I think it’s higher, those are the wandering “incidents” that are reported.

Why? From what I learned with a Mom with Dementia and from working with caregiving families for several years, they want to go home. Home, as in a place where they feel safe and where things are familiar. That’s the problem with this progressive, degenerative brain disease: familiar places aren’t so familiar anymore. I contend they are lost in their own minds, so they are seeking a place where they no longer feel lost. They could very well be in their own homes and still leave to find “home”.

Had a tough story to cover this week, one that hit too close to home. A 75 year old woman with Alzheimer’s walked away from her RV at a campground in Julian on Saturday while her caregiver husband was taking a quick shower. Today is Thursday. She’s still gone. There are searchers…on foot, on motorcycles, in cars, with dogs, in helicopters. But there’s a heck of a lot of brush and trees and farmland, and empty sheds and horse trailers in Julian. And she’s still gone. Heartbreaking.

I talked to her husband, a man she’d been married to for 30 years, who was so pained because he was supposed to be “in charge.” He does the dishes, he cleans, he cooks, he has one sided conversations with his love because she can no longer participate. She is able to do one thing, he told me, she makes the bed every morning. And he just wants her back.

I talked to her son-in-law off camera, because he is Dave Mustaine, the lead singer of Megadeath. He was cool, but in a sad place, hurting for his wife,daughter of the missing woman, Sally. I shared the story with both of them of the time my Mom wandered.

At the tender age of 61, Mom was diagnosed with Lewy Body Dementia. Doctors said she could no longer live alone, and we moved her into an assisted living facility in her town. Because she was 61–a good 15-20 years younger that the rest of the folks who lived there–and because she liked to paint and draw, once a week, a bus picked her up and took her to the senior center for an art class.

She wasn’t able to do too much at that point, but she liked taking out her colored pencils and paper and sitting with the other folks. That was until one day when she asked where the bathroom was. They found her later, on the street, flagging down cars. “Where are you going Linda?” “I want to go home,” she said.

When their environment changes, they get even more confused. They have to do a re-set to re-evaluate where they are, how they are going to operate, and that’s a tough task for someone with a brain disease like Dementia. I still hurt thinking about her level of panic, walking out of the bathroom and having no idea where she was. Trying to get somewhere familiar. I have no doubt that if she got into a cab, or if someone picked her up, she would have asked to go home, to the home she lived in for 20 years. Except now someone else lived there.

Thankfully, she didn’t get too far, and they came to get her from the assisted living. But that was the end of art class. We did some crafts and drawing in her room after that.

I went online and ordered her a bracelet. It had her name on the front, and her address, the words “Lewy Body Dementia” and my phone number on the back. It was gold with some beading, so it looked like jewelry. My Mom loved her jewelry. Now, of course, I know there are other options…like the Medic Alert/Safe Return bracelet offered through the Alzheimer’s Association, which has a registration aspect. There is the Take Me Home program in San Diego through the Sheriff’s Department. And there are new GPS devices coming out all the time. If only the folks with dementia would wear them. Mom used to cut or break her bracelets and watches off her wrist when she couldn’t figure out how to undo the clasps.

We were lucky. Others aren’t so lucky. I think of how confused Sally was. How she was looking for her husband, her touchstone, and because he was not in sight, she may have taken off. Or maybe she was looking for another room that was familiar to her.

I did get to do a little bit of educating on my live shots for this story (I’m a tv news reporter) talking about searchers not yelling her name because she might think she’s in trouble and not answer. Or the importance of searching low, because she may either see an obstacle in her path and turn away from it, or go under it and potentially get stuck. Or a trick I learned at an all day Dementia education class, to sing part of an old song as you look for wanderers in those early hours. “Row, row, row your boat, gently down the stream…” and listen for them to finish the rest of the song for you.

Sally’s still gone. It happens all the time. I ask you, if you have this in your family, not to say “Oh, she hasn’t wandered yet…” but to do something to try to prevent it. Put dead bolt locks high up or on the bottom of the doors. Put a bell or an alarm on the door. Put a black mat in front of the door on the inside, because with their depth perception issues, it may look like a hole and hopefully they would avoid that area. Buy a wall covering that looks like a bookcase and hang it on the door. Register them with local police. There are so many things we can try to do.

We, as caregivers, do the best we can. Bob is Sally’s caregiver. he was doing what they enjoyed, camping…something they did together. He was giving her nice experiences, as he had one sided conversations. I wish him and the rest of the family peace. They did the best they could. This disease is horrid. #ENDALZ

The Man Under the Bed

Posted on July 24, 2014 by - Uncategorized

The letter N in the list I created, The ABC’s of Alzheimer’s and Dementia is Never argue. The letter U is Use fiblets. This story does both.

When my mother was diagnosed with Lewy Body Dementia at the age of 61, her neurologist said it would be best if she didn’t live alone or live in her two story home for fear of falls. We made the family decision to move her into an assisted living facility in her hometown.

She’d been living there a few months when I got a call (she was still able to use the phone).

“Um, there’s a man under my bed.”

I had just a split second to decide how I was going to react to this. I had just come back from visiting her and there wasn’t a man under her bed then. She was 61 years old, a good 20 years younger than the majority of the others who lived in the facility, so the probability of an 80 year old man sliding under her bed was…slim. Even if he was slim.

I chose N: Never argue with the person with dementia. It causes agitation for both of you and makes things harder. Hallucinations are common with Lewy Body Dementia. I went into her world.

“OK Mom, is he yelling at you?”
“No,” she said.
“Is he banging on the bed when you watch tv?”
“No,” she said again.
“Well,” and here’s where U comes in. Use fiblets. It’s in between a fib and a little white lie. Tell a little story and re-direct the person with the disease.

I reached into my bag of tricks (which as caregivers we often
don’t realize we carry around until the very moment we need it) and I validated her hallucination. I also made sure she knew she was safe. I used fiblets throughout Mom’s disease, but didn’t know what they were called until I worked for the Connecticut chapter of the Alzheimer’s Association. I went for it.

“Well Mom, he’s under your bed to make sure you go to lunch on time,” I explained. “So, go to lunch and when you come back he’ll be under Mary’s bed to make sure she goes to lunch on time. He’s the ‘Under the bed go to lunch guy’! He works there!”


I held my breath.

“Oh,” she said. “OK.”

And knock on wood, I never heard about the man under the bed again.

Fiblets don’t work all the time, but when they do, it’s an opportunity to reassure, to go into their world and reduce agitation.

People with dementia have their own reality. They no longer have the ability of coming into yours, so you need to go into theirs.

It’s a journey, and with skills and tips, it can be a little less painful.

I send strength to all of you going through this. I get it. Mom’s been gone a year and a half. I miss her every day.

10 Life Lessons learned from my Mother’s dementia journey

Posted on June 22, 2014 by - Uncategorized

My Mom was diagnosed with Lewy Body Dementia at the age of 61. She lived with the disease for four and a half years. I was there with her, as her caregiver. I was there with her when she died. And I am a different person because of that journey. I learned so much about caring for people with dementia, many things that can be carried over into everyday life. Here are 10 of those life lessons. Thanks Momma.

A Approach the person with dementia slowly, with a smile. Be positive, make eye contact. Because of what’s happening in their brains, they often respond to your essence and body language before they can comprehend what you are saying.
In life, approach a person slowly, with a smile. Be positive, and make eye contact to establish trust. You never know what’s happened in their day already. Make this encounter a good one.

L Learn patience. It can take someone with dementia longer to answer your question, do something you ask them to do, or make a decision. You have to breathe, and be patient and wait for your answer. If it doesn’t come, don’t keep hammering them. Re-ask the same way once, then move on.
In life, try to breathe and be patient. Driving behind someone who goes too slow, in line at the grocery store behind someone who counts change. Take a second, it’s ok. Things will get done.

Z Zzz’s. Let someone with dementia rest. This disease is exhausting. If they want to take a nap mid-morning, let them. Their bodies work differently now.
In life, you need your rest too. You will perform better, be in a better mood. My Mom used to say if you are having a bad day, take a nap or go to sleep. It will all be better in the morning.

H Go to their happy place. Short term memories fade in the mind of the person with dementia, many long term memories remain. You can talk to someone with dementia about the war, their wedding day, their 13th birthday party, but they probably won’t remember what they had for breakfast. Talk about old times with them, especially when they are agitated.
In life, go to your happy place, especially when you are agitated. Seek out a happy memory, do a bit of deep breathing, realize this moment is not the end of the world. There are bigger things out there, and this moment will be over soon.

E Enjoy the moments. In mid and latter stages of dementia, people go in and out of lucidity. You should grab those moments when your loved ones are present, laughing, engaged and let those moments fill you up. You feel like for a moment, they’re “back”. Revel in that. You don’t know, unfortunately, when another moment like that will come around.

In life, absolutely enjoy the moments. Be present. When you come across something amazing, pause, take it in, and revel in it. It can be something big, like an opportunity at work, or meeting a special person, or something small, like the smell of jasmine as you walk to your car. Take it in and let it fill you up.

I Investigate. The person with dementia may not be able to verbalize how they are feeling. You need to be a detective. Are they hungry, thirsty, tired, do they have to go to the bathroom? Check out the environment, is it too loud, are they uncomfortable where they are sitting? Sometimes, it’s up to you to figure out what’s wrong.
In life, do a little investigating of your own. Did your partner really mean what he or she just said? Or does it come from somewhere else? Did something bad happen at work? Do they not feel good? Everybody’s got something on their mind.

M Mistakes. You will make many as a caregiver. There is no such thing as a perfect caregiver. But you need to forgive yourself if you lose patience with your loved one, or moved too quickly to wash her and upset her. You are doing the best you can. Just keep giving love.
In life, you will make plenty of mistakes. Try not to regret them, try to learn from them. They are part of the fabric of your being.

E Every day is a new day. Just because you and your loved one with dementia had a bad yesterday, does not mean you will have a bad day today. Their brains wipe the slate clean. They may not remember the argument you had when you tried to get them to the doctor the day before, so you two can start fresh.
In life, today is a new day. Yesterday may have been incredibly taxing, but today, open your arms to new possibilities. You have another chance to make it great.

R Re-direct, don’t correct your person with dementia. Their reality is different from yours now. They can no longer be rational and come into your reality. So go into theirs. Validate them. “Yes, it is Tuesday (even if it’s Friday), but today we are going to do a Friday activity!” Believe me, it will make communicating so much easier.
In life, is your co-worker seeing red and yelling at you for no reason? Validate and re-direct. “I am sorry you feel that way/that happened/etc. Can you help me with this other thing?” Let them know their feelings are real and acknowledged, and then try to take them off topic.

S Sense of humor. You need one as your loved one is slowly taken away by a mind-robbing unfair disease. One day later in Mom’s journey, while visiting her at the nursing home, she was somewhere else. I didn’t get any eye contact, no hand raise, no response really, as I wheeled her around in her chair. At the end of the visit, the handsome male nurse walked in and approached her “Hi Linda!” He said with a smile. What do you think happened? Mom lit up like a Christmas tree. Big smile, “AH!” she said, and put her arm out. I just smiled and laughed. Nice one, Mom. I am my Mother’s daughter, I thought.
In life, you have to laugh sometimes. Life hits you hard, it can be frustrating, but look for something positive, and smile and laugh. It’s a necessary release.

I spelled Alzheimer’s here with the life lessons…A through S. I hope you never have to write it down, or say your loved one has it. But if you do, hang in there. Through this hardship, you will learn so much about yourself, and life.