Monday, April 9, 2018 – I have read Bob DeMarco’s writing on Alzheimer’s Reading Room and this one on touch and kindness was especially spot on.
Another person, Peter Berry who has dementia, puts out a weekly short video of things related to what he’s experiencing at that time, that he thinks will help others. He is a very positive person, determined to live his life the best he can. Here is the link to his you tube channel. Peter Berry’s You Tube Channel. The latest video, his 40th weekly video, is the main one I want to direct your attention to. At least to start off. I’ve never thought of doing what he talks about in the 40th weekly video and I will be from now on!
Things have been a little rockier lately with my dementia than usual along with other challenges in our life. I would appreciate prayers. This isn’t going away but please pray that God gives me and Roy the strength and the wisdom to handle this the best way we can, the way He wants us to. Through the rough times and the good times God is our Rock. I am so thankful for that.
One of the biggest challenges Alzheimer’s Caregivers face is how to communicate effectively with someone living with Alzheimer’s disease. This challenge is particularly difficult when a person living with dementia becomes nasty and mean. The importance of touch and kindness should never be underestimated in Alzheimer’s and dementia care.
At the beginning, my mother turned meaner than a junkyard dog.
She said mean and nasty things to me every day.
This was new. My mother had never engaged in these behaviors with me before.
I had a leg up on this one because I studied communication in college and graduate school.
I understood that when my mother said something mean or nasty that it was the Alzheimer’s at work. It was not hard to make this cognitive leap. She had never done it before, now she was. What changed? Her brain changed. It was sick.
Even though I understood what was happening, it still hurt when she said those things to me. She did make me feel angry and sad. Every day. Day in and Day out.
I knew I had to do something. I finally realized something had to change — the first thing that had to change was me. I was going to need to learn how to label my feelings so I could control what I was feeling. Instead of mad, ready to take action.
I also decided I was going to have to do something to change Dotty. I already knew that trying to reason with someone suffering from Alzheimer’s is like trying to jump over the empire state building in a single bound.
Here is a quick description of one of the things that I did start doing. And yes, over time Dotty stopped saying those mean and nasty things to me.
Everyday, early in the morning, I would bend down and say something nice and positive to my mother. While doing this,
I put my forehead on her forehead.
I tried to get her to smile and say “yes”. I call this the positive reinforcement part of the process. When I say something nice, and when she responds yes –it anchors her.
I started to do this first thing in the morning several years ago. But not before I discovered that it worked and stopped her from being mean and vicious. I do it now in the same way I do many things — before it is needed. I call this getting out in front. I also call it getting the day started on the right foot. I don’t sit around and wait for the crap to hit the fan.
This is what I started doing in an effort to make my mother feel more secure and to stop saying mean things to me. My hope was that if I could make my mother feel more secure, she would stop being a junkyard dog.
When my mother would say something mean and nasty to me like, “get out, I can take care of myself”.
I would smiled at her, put my head against her forehead, and say something positive like,
“I am here, and I am not going anywhere”. While my forehead was still attached to hers I added something like,
“We are both here to take care of each other, we need each other”.
I was hoping beyond hope that somehow my mother would come to believe we were a team.
The instances of my mother’s meanness and nastiness have declined dramatically. Today, she is more like the sweet person I always knew.
I believe the combination of touch, positive reinforcement, the calmness in my voice, and the smile did the trick. It really wasn’t hard to do. I did need a lot of practice on the emotional side. I had to get control of my emotions. I had to learn to meet meanness with Kindness.
On the other hand, the words came easy because I meant and believed every word I said.
Over time I learned how to communicate in a new, different, effective way. This is pleasing to me, and makes me feel happy.
I relearned something I already learned a long time ago. You get more with sugar than you do with vinegar. I guess you could say, I became a better person along the way.
I could thank Alzheimer’s for this. I won’t.
Thank you, Dotty.
Don’t be afraid to try it. I’m confident it will change your life.
I have been writing 3 blogs for the last few years. My own dementia has progressed to the point where I can’t do that without a lot of frustration and even failure. There are a bunch of people following this blog so I want you to know where the information will now be posted that would have been posted here on Some Things I Learned About Dementia.
Our personal blog is called Dora and the Explorers. We live in a motor home and travel most of the year (until recently) Dora is our motor home, Boots is our truck we tow behind Dora and we are the Explorers of all parts of the United States. Just wanted to explain the blog name! Our granddaughter Madisyn helped us name all this early on in our RV planning stage. She was only 3 when we started this and Dora was her favorite television show. She was not real sure about having Grannie and Paw Paw gone a lot of the time so letting her come up with this helped her comfort level greatly. She loves to say that we get inside of Dora through her ear (door) and when Dora makes funny sounds she says Dora’s tummy is grumbling!
I will still be sharing dementia information I find and information about my own dementia. I’ve felt strongly from the beginning of my dementia journey that sharing and helping educate caregivers and dementia patients was something God laid on my heart to do. I will continue doing that at our personal blog.
Some of you now receive an email when I publish this Dementia blog. If you would like to get an email when I publish something (dementia related or otherwise) on our personal blog go to the blog at http://rosalynandroy.com and on the right hand side there is a place that says Follow Our Blog. Enter your email and when you are sent an email, please confirm it.
The third blog I’ve been writing for a few years is Wacky Wonderful Wednesdays. Like the web page says, my hope is to give you a midweek uplift a few giggles and lots of smiles.
I am an encourager by nature and love finding funny, heartwarming and downright silly things to share, hoping to make someones day a bit brighter. This use to be a weekly blog but I can no longer handle that. It’s become a whenever I can do it blog and comes out on any day of the week. Suprises!!
Our personal blog will now contain all three blogs: personal including our travels, dementia and wacky fun stuff.
Thanks for following this blog and I really hope you will follow our personal one. Take care and God Bless Ya’ll! Rosalyn Chauvin
This was originally written in 2014. I have to admit that while re-reading this particular blog post from 2014 it brought tears and heartache to me. I have read so many stories and episodes that caregivers have shared of how difficult caregiving is and it absolutely is. It’s horrendously difficult to watch your loved one suffer and turn into someone unrecognizable. I now see these difficulties from the other side and feel the importance of others understanding this horrible disease from our side as well.
Nothing in today’s blog is from any source other than our experience with Mama. She lived in our home during the final stages of Alzheimer’s. While we were moving from one house to another (and doing renovations on the new house) she lived in a local Assisted Living Home. Most of the main points I make below can, and I hope will be, used in your care giving. I’ll share what we did that seemed to work and you take it from there to fit your situation.
This week’s blog started out being about two other topics. However, as I collected information to share and writing pieces to add into these blogs, one thing keeps tugging at me to be shared first.
So here it is: Love them, be kind to them, be sweet even childlike sweet. Always strive for patience and calmness. Pray often for these things. It may not be in your nature to love others, be kind to others or be sweet to others. If not, I beg that you try it during this time. fake it if you must, but be loving, kind and sweet to them.
Are caregivers saints?? No, but sometimes it will feel like everyone expects you to be one and you may feel heavily weighed down with this responsibility. My solace was knowing that God is my Savior, my King, my everything and He would never leave me alone as I cared for Mama. My pastor was a great comfort during that time. My husband was my hero loving Mama like she was his own Mama and allowing our household to be completely turned upside down for a long time. Normal took on a new meaning and I can’t stress that enough. We learned to laugh a lot and be silly to break the stress that sometimes hung in the air. My sister was my primary relief and was wonderful about coming to stay with mama as often as I needed her to. She’s my only sister, so it fell on us to care for mama in her last years, as she so willingly loved and cared for us during our childhood years and on into our adult years.
These Alzheimer’s patients (I’d like to call them victims) didn’t make the choice to lose themselves to this disease that eats away at their true being, a little piece at a time. They are very dependent on their caregivers for a lot during the middles stages and for everything during the final stage.
It is easy to say “They don’t know what’s what, so why even care?” Can I say strongly enough “Shut it”. Don’t even go there if you have a loved one in need of your care. Most likely they were one of your primary caregiver when you were a baby growing into a child, teenager and didn’t let go until you became an adult. They loved and cared for you then and now is your opportunity to return that love and care.
Making the decision to become the primary caregiver may not have been a choice you made. You may have gotten it by default or you were the only one available. Whatever the reason, you have in your hands the heart and well being of someone for the final years, months and days of their lives. It’s a lot like being a parent, only the roles are reversed now.
Near the latter stages of Alzheimer’s Mama didn’t always know either my sister or I was her daughter, whose house she was living in or even who she was. Then nearer the end she couldn’t speak, walk, or smile any longer. This decline occurred over maybe a month or two so I know we were very blessed at that short period of time.
She had the most beautiful smile, I just had to share that!
During this time I started calling mama “pretty girl”, touching her face lovingly with the back of my hand, and loved her like a child loves to be loved. No matter what was happening in the rest of the house or how many times she’d call me into her room for the same thing over and over I “tried” to always enter her room with a smile on my face. She responded with sweet smiles and if she had been agitated like they sometimes are, that would stop.
When they leave the world of reality for their bizarre little world, creating peace and happiness in some form for them is key.
I had two little beanie babies that we gave Mama as her babies to pet and love, and she was so happy with them. Mama loved to be needed and be helpful to others. She took right to taking care of the babies in the same way she use to take care of us. We would talk to them and she’d tell me stories about them and the joy on her face during those times was so heartwarming.
When she’d tell me some absolute foolishness I’d go there with her and we’d have a grand old conversation.
Most people benefit from the touch of another person. These wonderful people are no exception. Mama often applied hand lotion to her hands pre-Alzheimer’s and her hands were always soft. She responded so well to having that done while living with Alzheimers that we made a regular practice of doing that. Just that simple act calmed and soothed her spirit. Don’t just stop with the hands and arms (and while doing that do it slowly so they enjoy it longer) every now and then do their feet and legs. The stimulation this gives them is so therapeutic to giving them another moment of light in their otherwise darkening world.
In one of next week’s topics I’ll share more about how we tried to provide a peaceful loving environment for Mama based on her love for the Lord.
Your Alzheimer’s patient isn’t my mom, so your choices will be different, but they all deserve all our love and kindness. You will see that message in my different forms throughout the weeks this blog is written.
Please come back next time when I’ll share two topics: Learning about your loved ones lives before it’s too late and how to use their passions from when life was good to bring some joy into their current lives If you want to get an email whenever I post a blog (I write about other things, not just Alzheimer’s) find the “FOLLOW” box which is usually to the right hand side somewhere, enter your email and respond when the confirmation email is sent to you.
If you are in need of prayer for yourself, in your role as a caregiver, or if you have any specific questions please send me a comment with whatever information you want to share or ask about. I’ll say again that I’m not expert but I probably experienced with my mom a lot of things you’re going through and will try my best to help. If I don’t know the answer I will tell you I don’t know. I’ll never judge, I’ve been judged enough to last a life time and would never do that to someone else. My email address is firstname.lastname@example.org if that is an easier way to communicate.
Rick Phelps, founder of Memory People on Facebook published the following article this week. Remember , when reading it, that he has had Early Onset Alzheimer’s since 2011. His point of view is very valuable for caregivers to hear and learn from.
You’re loved one is changing. The question is, are you? I have often said that you as a caregiver have to come into my world as a patient. I cannot come into yours. That world no longer exists for me.
In other words we sometimes get all worked up on what works, what doesn’t, what to do, what not to do. The thing is what works today for whatever situation may not work tomorrow. And may not work ever again.
So what do you do? This is where coming into our world comes into effect. It’s obvious that you cannot actually know what is happening and understand what we as patients go through. I’m a dementia patient and I don’t know what’s happening most of the time.
But you as a caregiver have to learn to adapt. Change with the changes. I hate to compare dementia patients to children but here is a very good analogy.
If you have a child say a year old and are giving them scrambled eggs for breakfast. They love their scrambled eggs. Then one morning, all of a sudden they don’t. They spit them out. Won’t eat them. Just won’t.
Instead of trying to figure out why a year old suddenly won’t eat eggs if futile. What you do is don’t feed them scrambled eggs anymore.
Same goes with a dementia patient in so many ways. If one morning your loved one for whatever reason refuses to get dressed, it is not in anyone best interest to make them or to try to figure out why one day all of sudden they refuse to get dressed.
If they for whatever reason decide one day they don’t like the television on, you better not have it on. If they decide their not going to the doctor, all the coaxing in the world isn’t going to change their minds.
In other words in all these scenarios there is one constant thing. Don’t try to make a dementia patient do anything. Now, if it of course has to do with their safety or the safety of others of course you must intervene.
Trying to explain to a dementia patient why they can’t or can do something is also futile. They don’t understand. We sometimes forget this.
It’s normal for us to get a shower or bath every day. But for a dementia patient the water coming out of a shower can be devastating. Could be the fact that the shower doors are shut and they feel confined. Could be that the water hitting them scares them. It could be dozens of things.
The main thing is you have to change your thinking that your loved one must bathe everyday when or if this happens. Now that doesn’t mean that you never see that their hygene isn’t taken care of.
You can easily wipe them off with a wash rag, hit the main spots and baby powder works wonders on body odor. How dirty are they getting anyways?
The point I am trying to make is I cannot help some of the crazy things that happen. No dementia patient can. You will read on here how some caregivers feel that their loved ones can do somethings, they are just not doing them because they want to upset the caregiver.
This is just making excuses for the caregiver not being able to accomplish what they want their loved ones to do. From the smallest things, to huge things.
I tell people all the time that this thing about patients hoarding things is crazy for example. First off, to hoard something you have to have a plan. Plan to take whatever it is you are hoarding, plan to put whatever it is somewhere, and plan to get it later. And remembering all the while where the thing is.
This simply doesn’t happen in the world of dementia. People call it hoarding because that is how it is easily explained away. When in fact what the patient is doing is simply putting things where they think they belong.
Once again, we make things much more difficult then they need to be. I can’t tell you the number of things I have put where they don’t belong. Does that mean I’m hoarding things? Hardly. It means if you find the bread in the oven, for whatever reason that is where I thought it went.
If my wife finds things where she knows they don’t belong, she simply puts them where they go. Many times not even mentioning to me why they were where they were.
I can’t begin to tell you the number of things I have thrown away. From silverware, to glasses, to toothpaste, to full jars of peanut butter. Why? Who knows. I don’t realize I am doing this. It’s not normal to throw away beaters after mashing the potatoes but I have done it many times and will again.
What I’m getting at as a caregiver no matter what any of the “experts“ tell you, you can’t figure out why patients do what they do. Try to figure out why your loved one has a hard time especially during the winter months when it gets dark so early. You can’t.
There will be people who will tell you turn all the lights on in the house. As if this is going to “fix” the thing we call sundowners. It isn’t and it doesn‘t.
I can tell you from someone who suffers from sundowners that if we turn all the lights on in our home about sundown, I will still be confused, nervous, anxious, and even scared, I will just be all these things in a well lit home.
Someone came up with the idea of turning on all your lights, thinking that is the lack of sunlight that causes sundowners. I can have issues of sundowners in the middle of the day. I can have it first thing in the morning. It has nothing to do with sunlight or the lack there of.
That’s me. Your loved one could be just the opposite. Again, what I am saying is we are all different. And what works for one may not someone else. Or what works today, maybe won’t tomorrow.
Think about this, today as bad as it is for your loved one, this could be the very best day they ever have again. We simply don’t know. There are good days and there are bad.
Most of my days anymore are bad. With a little bit of good throughout each day. But all in all, I know what is in store for me today, tomorrow, and the next. I just don’t know if I will ever have a really good day ever again.
And nothing can change this. You as a caregiver can help by coming into our world as I said. We simply cannot function in the world you live in. The one we use too.
Monday, February 5, 2018 – When I saw the neurologist last, she put me on the lowest dose of Galamantine, a dementia medicine. It is not making me lightheaded, well it is just a tiny bit, but not like the others started doing. It does seem to be helping a little with remembering what things are called. I’ll take any amount of help. The dosage can be increased each month to a maximum of 24 mg per day. We’ll see what the neurologist says when I go back next.
Original blog 02.23.17 – As Alzheimer’s took hold of Ted McDermott, he started forgetting his family. He also started getting violent. His family watched on, heartbroken. But then his son, Mac, had a brilliant idea. Ted has always been a talented singer. So, his devoted son uses music to battle his dad’s Alzheimer’s!
God gifted Ted with a beautiful singing voice, something he’s always treasured. There was a time when Ted traveled around Britain, singing in night clubs and pubs. When he finally settled down and started working in a factory, he continued to sing on the side.
An Awful Diagnosis In 2013, Ted and his family got terrible news. Ted was diagnosed with Alzheimer’s disease. It progresses over time, causing problems with memory, thinking and behavior.
As the disease took hold, Ted started forgetting his family.
“In the last few years his memory has deteriorated a lot – often not recognizing me as his son,” his son Mac explained. “It’s a horrible illness.”
The memory loss was tough. But the outbursts only made things worse.
“The more the Alzheimer’s kicked in, the more Dad became violent – both physically and verbally. It was incredibly difficult to manage, and terrifying at times,” Mac said.
Then, one day, Mac had an idea.
“My dad’s been a singer all his life and entertainer all his life,” Mac explained. “He’s a real character and he loves singing. He’s got a good voice.”
Ted has music in his bones. So, Mac reason that maybe it would reach him in a way no one else could.
When Mac noticed Ted starting to zone out, he put on some of his favorite songs. Just as he’d hoped, Ted sang along, remembering the lyrics!
Mac was on to something. And now the devoted son uses music to battle his dad’s Alzheimer’s!
An Internet Star Is Born
Mac found that listening to music with his dad works wonders.
“When we’ve got him singing again he’s back in the room. It’s these moments that we treasure,” he said.
Ted became known on Facebook as The Songaminute Man. Mac started filming these special moments in a James Corden Carpool Karaoke style.
The videos of the sweet son driving his beloved dad around while the two belt out melodies together quickly went viral. Ted was officially a singing sensation!
Thanks to all the hype the father and son duo received online, a dream came true for the pair. Record executive Alexander Van Ingen spotted the videos and quickly signed Ted as an artist. He described Ted as “truly remarkable for any singer, let alone one 80 years of age.”
Ted will soon release his first single, a cover of Frank Sinatra’s You Make Me Feel So Young, to raise money for the Alzheimer’s Society. And Mac can’t believe it.
“It’s amazing to think he has a single coming out,” he said.
Music is a gift from God, and it’s amazing to see this gift used to heal!
Please come back next time when I’ll share more topics about dementia. If you want to get an email whenever I post a blog (I write about other things, not just Alzheimer’s) find the “FOLLOW” box which is usually to the right hand side somewhere, enter your email and respond when the confirmation email is sent to you.
If you are in need of prayer for yourself, in your role as a caregiver, or if you have any specific questions please send me a comment with whatever information you want to share or ask about. I’ll say again that I’m not expert, but I probably experienced with my mom a lot of things you’re going through and will try my best to help. If I don’t know the answer I will tell you I don’t know. I’ll never judge, I’ve been judged enough to last a life time and would never do that to someone else. My email address is email@example.com if that is an easier way to communicate.
I am creating my own graphics with scriptures. When I can, those will be the ones I’m sharing here. Another way to help expand the use of my brain to keep it ship shape!
I don’t normally like scripted prayers because I believe that you pray to God from your heart. I am sharing this prayer below not necessarily for you to use to pray but because it gives some great insight into what being a good caregiver is like.
I’m going to need a lot
of help to become a good caregiver.
I’m counting on you, God, for that.
Help me grow patience for this journey.
Help me forgive myself for all the ways I fail.
Show me how to see that heart within
that longs for unconditional love,
just like me.
Show me how to know that soul
that shines in the light of divine love,
just like mine.
Show me myself in this person.
Show me this person in me.
Help me listen to a thousand repetitions
without getting angry.
Help me to say, “Uh-Huh,” instead of
“I already told you that!”
Help me not be frightened or repelled
by a grown-up needing guidance
and help like a child.
Help me laugh when
I find sheets in the oven,
socks on hands,
underwear over pants,
someone undressed and back in bed
I just spent an hour getting up.
Help me be kind, to myself and others.
To say, “Oh well!” when I lose my temper.
To say, “I’m sorry” when I owe it,
To say, “Never mind” and mean it,
To say, “Oops” and not scold.
Help me remind myself that,
next to the end of civilization as we know it,
this really isn’t so much.
Help me forgive this person’s illness.
Help me forgive my lack of empathy.
Help me remind myself that
I don’t have to be perfect
and, as you know, God,
that’s a good thing,
Help me to journey to the place where
it’s enough to be the people we both are.
Help me be amused instead of judgemental.
Help me stop blaming someone for their illness.
Help me be kind
instead of angry and frightened.
Help me give more than I ever got.
Help me grow into the person
who can love everyone exactly as they are,
Help me be willing
to become my parent’s parent
instead of resisting with anger.
Help me learn how to have fun,
how to travel into different time zones
with my parent
who thinks this is 1928 in South Dakota.
Help me understand
that when my 88-year-old mother
asks me when her mother is coming home
it means she needs a mother.
Help me be that mother.
Help me think about the fact
that sometimes everyone feels
like a motherless child.
Help me feel that gap.
Help me know and understand that
as I become what others need
I become that for myself.
I’d be really grateful, Lord,
if you could do all that for me really fast.
Or maybe at least,
you could rush me some patience.
(c) Frena Gray-Davidson
Author of “Alzheimer’s 911”
Help, Hope, and Healing for the Caregiver
Robert D. Reed Publishers http://www.rdpublishers.com
Friday, January 26, 2018 – I know I say about a lot of these dementia blog posts that they are important. These two projects covered below are something I’m working on while I still can, so they are very important to me right now.
More important than these two are my Living Will, Power of Attorney, and Medical Power of Attorney which Roy and I have had in place for years. When we took care of preparing and having my mom’s documents signed we did our own also. Everyone should have those three documents and your actual will prepared and signed. I just tried to look up the law on these three documents but it was more than I could do right now.
The first thing I share below is “Learning about your loved one’s younger lives before it’s too late.” I have really taken this project seriously. A couple of years ago I started writing about my life. If I can remember it now then it’s probably a good thing for loved ones to talk to me about in the future because I have a better chance of remembering them when only long term memory is left. In addition to me writing down what I can remember, I asked friends and family to share memories they have of times with me. If I remember their memories it goes in my document. The document is now eleven pages long. About half of it is just bullet points of memories but half is complete. I’ve given the file to my youngest son to add memories of he and I, or his family and I . I wrote some of it but he’s filling in the details. I’ll send it to my oldest son soon.
If any of my friends or family have memories about our relationship, please send them to me! Several friends did this when I first started putting this together and it was wonderful.
I’ve read a lot about when visitors bring up old memories with a patient it brings the patient out possibly being able to communicate when they seem to have lost that capability. I really want to stay as communication able as long as I can. The file is on my computer and I add a little bit to it each week. This document will be available for anyone who visits me in an effort to help me and them be able to communicate.
In addition, if you have this information, you’ll be prepared to know if they are having hallucinations or real memories.
The second topic below is “How to use their passions from when life was good, to bring some joy into their current lives.”
Reading books and my Bible are important in my life. We’ve purchased two Wonder Bibles in the King James Version of the Bible. Most of the Bible scripture I learned was in my younger days was in the King James Version. When I can no longer read my Bible (I’m not there yet!!) I will be able to have it read to me and am hopeful I’ll make a connection with the verses I’ve learned and be able to continue to have God’s Word communicated to me!
Listening to music and singing with them is something that makes me very happy and stirs my heart as I remember the words. We have recorded a huge library of music from several genres. Our church’s choir and solo specials, Christian gospel, Christian contemporary, Christian hymns, rock and roll of the 60s and 70s, acapella singing, Christmas songs and hymns, Patriotic, R & B, movie themes, and more! I am moving these songs to one place on my computer so that it can be turned on and played for hours on end if need be. I know I’ve shared articles about how important music is to reaching down deep in a dementia patients mind.
Old TV shows like Bonanza, Andy Griffith, Bewitched, I Dream of Jeanie, Mr. Rogers, Sesame Street, old cartoons, Moonlighting, Little House on the Prairie and lots of other movies or TV shows are shows I hope to collect and keep for watching at a time that would help me.
I’ve learned to paint and hide rocks this past year and I hope that is something I’ll still be able to do at some point. I love sharing them with people so as silly as it may sound if I paint a rock for you it means I love you a lot! I just finished making personal rocks for four of my grandchildren and I certainly love them a lot!
When the time comes that none of these brings me to a communication place, you’ll know that if it is at all getting in it is making my soul and heart happy.
Original Blog published December 26, 2014 – Merry Christmas to everybody from my husband Roy and I! We really hope everyone had a blessed Christmas day! Continue reading →
Monday, January 22, 2018 – When caring for someone with dementia it is important to get into their crazy little world. Living in your normal world while they’ve gone over to a wild and wooly world doesn’t help either of you. Caregivers have to see things from a different angle than with most patients. When I read this article I thought that this is a wonderful description and example of how a caregiver was able to figure out what was going on in the patients little world. Both patient and caregiver benefit from searching for what works with your specific patient. One of the biggest things to always remember with a person with dementia is “It’s not the person, it’s the disease”. The patient absolutely does not mean to be mean and they do not know how to communicate with the caregiver what they really need. I thought this article was something that would help all caregivers so please read this and if you want more information like this go to the Alzheimer’s Reading Room by the link below!
I think we were blessed that mama was never really mean to us. She was always loving and thankful for every little thing we did, even when she didn’t know who it was that was doing it for her. The only times she even said anything negative was when she told us “the food here is not fit for a dog” and “those people upstairs keep the air so cold in here”. Not at all mean, right! I am so thankful that was not the case for us!
Alzheimer’s caregivers often feel enormous stress when their loved one is mean to them; or, engages in difficult behaviors that are hard to understand and accept.
You are reading original content from the Alzheimer’s Reading Room which contains more than 5,000 articles since July, 2009
By Bob DeMarco the Founder of the Alzheimer’s Reading Room (ARR).
Does this person look mean to you?
The list of difficult behaviors that Alzheimer’s patients express in the mid stage of the disease are long, and sometimes never ending.
It took me 3 years to figure out how to stop my mother from being mean to me. If you read this article and follow the links that explain how I did it, you can do the same thing in a couple of hours.
I couldn’t possibly list all of the mean and nutty behaviors my mother, Dotty, engaged in in those first few years of our life together with Alzheimer’s. The list is just to long.
For this article I am going to focus in on one mean behavior: when my mother repeatedly told me to get out, she didn’t need me, and she could take care of herself.
I’ll start with a few words of advice to caregivers
Many of you can probably imagine what it feels like when a person living with dementia tells you – “I don’t need you, get out”.
Or, says something even worse than that.
So there I was. I had dropped out of the world to care for my mother, 24 hours a day, 7 days a week, 3,112 days. Could she have said anything meaner, “I don’t need you, get out.”
These mean spirited episodes with my mother went on for years before they stopped. However, I was never deterred by her mean spirited behavior because I made a decision from the very beginning – I am going to put a stop to this.
So I tried everything in the book. I tried being overly nice – didn’t work. I tried being overly positive – didn’t work. I tried explaining why she needed my help – didn’t work.
I told her if she didn’t start accepting my help she would end up in a “home” – that did not work. In fact, it made things much worse.
I tried everything I could think of doing – it did not work.
Finally, I threw the book away and started thinking. And then it happened.
I realized something had to change, and that something was me.
Pretty simple huh? Dotty wasn’t going to change so it was up to me to change. To change the entire dynamic of our relationship.
Shortly after my realization that I had to change, I invented a new place I first called Dotty’s World.
I started asking myself – why? Why does Dotty get so upset? What is happening that is making her upset? Is it me?
Yes, it was me. Okay, we had that out of the way. It was me.
Eventually I changed the name of our new world to Alzheimer’s World.
Alzheimer’s World was the place I would go to to better understand Dotty, and to better understand me.
At first, I found that it was difficult to change gears and get into Alzheimer’s World. So, I actually started
taking a giant step to the left when I needed to enter Alzheimer’s World.
To be honest, I couldn’t get there without the step to the left. Just couldn’t.
Next, I started taking notes in a spiral notebook. Every time Dotty would get mean I would write down what was happening before these episodes.
One thing stood out. Every time I left Dotty alone, shortly thereafter, she would get mean.
“Get out, I don’t need you, I can take care of myself”.
It became obvious to me that I couldn’t leave Dotty alone. I couldn’t leave her alone for 30 minutes to go to the store. Or, for any other reason. This is pretty common in mid to later stage Alzheimer’s. A person who is deeply forgetful cannot be left alone.
Yes, there were other cataylsts to this mean spirited and often bizarre and crazy behavior.
For example, if I would tell Dotty you can’t do that. Or, if I would correct her and try to explain the errors in her thinking. Or, even if I would stop her from doing something.
Once I made it to Alzheimer’s World
I started looking at the world from Dotty’s point of view.
I looked at the world from her eyes.
Pretty soon I realized that the things that Dotty would do seemed very normal to her. I just looked at her while she did them and pretty much kept my mouth shut.
Pretty quickly, almost overnight in fact, I accepted that the things Dotty did were normal in Alzheimer’s World. So, I stepped to the left to better understand. Amazingly, the amount of stress
I was feeling diminished – it happened immediately.
In Alzheimer’s World instead of getting all bent out of shape, I found myself marveling at the things Dotty would do. The things that Alzheimer’s patients do are often fascinating. After all, their brain works differently that yours and mine. You have to start understanding the brain on Alzheimer’s.
Now to my first major point. When Dotty said,
“Get out, I don’t need you, I can take care of myself” that is not what she meant. What she did mean is: Don’t leave me alone, I’m scared, please don’t put me away in a home.
Yep, she was scared and, like it or not, I was the one causing the fear when I left her alone.
Simple solution, I stopped leaving her alone.
Once I realized that there was a very different meaning to Dotty’s words in Alzheimer’s World, I was able to develop better and better solutions to problems.
In this case, I didn’t leave Dotty alone. But that is not all that I did. When she said “get out”, instead of getting all bent out of shape and reacting back at her, I did the exact opposite. What did I do?
I smiled, walked over to her, put my arm around her, and calmly said, in a clear, low, confident voice,
I’m not going anywhere, we are here together now, and I am going to take care of you.
It took a while, but yes, it finally sunk into her brain.
Alzheimer’s World is wild, sometimes crazy, a backwards place. I learned that in Alzheimer’s World words from an Alzheimer’s patient are often a cry for help. Many times what an Alzheimer’s patient says is exactly the opposite of what they mean.
So I started meeting meanness with an equal and opposite reaction – kindness. Kindness, compassion, and understanding.
This is how you learn to cope with Alzheimer’s. Understand, cope, communicate.
By the way, Dotty stopped telling me to get out. The few times she did tell me to get out I actually laughed. This helped me to realize how far I had come as a caregiver. Instead of enormous stress, I felt calm and comfortable.
Once your incorporate these ideas into your life you will find that many of the things that are driving you crazy are normal in Alzheimer’s World. The amount of stress you are feeling will be greatly diminished by your new understanding of your loved one.
Here is the best part. Your loved one will begin to cooperate. So instead of feeling like they are the enemy, you will start to become good friends. The bottom line – it is up to you. Wouldn’t you rather live a more happy life while caring? Wouldn’t you like to bring the highest quality of life possible to your loved one?
Sunday, January 14, 2018 – This blog from February 2015 is fairly long. There is a 10 minutes video, an excerpt from a book “More Glimpses of Heaven: Inspiring True Stories of Hope and Peace at the End of Life’s Journey” by Trudy Harris, RN (I highly recommend reading the book if the excerpt sounds like something that would help you.) There is a book written by her before that one called Glimpses of Heaven, etc. I have not read that one but you may want to.
In the original blog, there is also an accounting of what all went on with mama in her last few days (very different than the one about her conversation with herself) and an article titled END OF LIFE SIGNS, THE DYING PROCESS.
I’ve added some links here to books about Dementia and also dying with dementia.
Original post on 02.27.15 – Today’s post will be about an Alzheimer’s patients end of life. Not the most uplifting subject but knowing as much about it as possible allowed us to make good decisions for Mama and gave us a calmness about the process. Knowing what to look for allowed us to be prepared for when Mama went to live with her Lord and to help walk her out of her earthly home into her Eternal Home.
This is such a huge topic that again I have to remind you I am not an expert. I just know how it went with Mama, the advice we received and what I feel we did well and would recommend to you. Also included are information from other sites that I want to share.
The Importance of End of Life Care with Dementia
Coming to terms with a loved one nearing the end of their life with dementia is never an easy situation. But it’s important to recognize this stage to make sure our loved ones receive a good quality of life as this time comes near. Making sure there is a strategy is a MUST so individuals can die well with their dementia.
Karen Harrison specializes in end of life care and believes a problems with end of life care is the failure to recognize the signs early. Moreton Hill Care Center practices early end of life care using a NHS approved Golden Framework. Watch and learn about a daughter and her mother living with Alzheimer’s, who have benefited from this care.
Click on the graphic below to watch this video.
While this video shows a woman in a private facility, everything they talk about being important at end of life is found in Hospice care and is available to your loved one regardless of your income level. I’ll write more about hospice care and the absolute importance of it next time.
An excerpt from the book “More Glimpses of Heaven: Inspiring True Stories of Hope and Peace at the End of Life’s Journey” by Trudy Harris, RN, where Bonnie Tingley tells about her experience with Jim a 56 year old man dying of colon cancer. I just finished reading this book and was blessed with each chapter I read.
I made a nursing visit early in the week, knowing full well I would need to check on them again as the week progressed. Jim seemed much weaker with each visit. His appetite was lessening and he was sleeping more and more every day. These are common signs that let you know when the body is beginning to shut down and getting ready to transition into a new life, which we call eternity. People who have a very deep and abiding faith in God long to see Him at this moment and want to go on to the heaven they know has been prepared for them since the beginning of time. They are seldom afraid and Jim was getting closer to his phase with each day.
Later that day she received a phone call from his wife Peg saying that although Jim’s breathing and extremely shallow and he was exhibiting all the signs and symptoms of impending death, he seemed unable for some reason to be at peace and to let go….. Peg asked if I would come right away to be with them.
I jumped into my car and sped the distance to their home in record time…….. Sitting at the head of the bed, holding Jim’s hand in hers, was his lovely wife, Peg. All three children were on the bed with their dad.
I quietly prayed for the words to accomplish what the Lord wanted me to do at this time to help both Jim and his family. Words came to directly from the Holy Spirit, I know. I whispered softly to Jim that Peg had his hand in hers, and that Jesus was holding the other one. I reminded him that Jesus loved him and his family dearly, and He would take care of them and provide for all of the. I told him that even though he loved them very much, Jesus loved them even more. Peg and the children would be well cared for by this room full of good people. Now it was time for him to let go and go on to God. I assured him that the time was right. I told him that when he was comfortable and ready, that he could simply let go of Peg’s hand and follow Jesus, who was holding his other hand. He became immediately calm and died in an instant, very peacefully. Husbands often wait until “someone in charge” comes to be with their loved ones. It is as if, until the very end, they want to be sure their family has the loving support and care they need.
I know of no other experience that is filled with greater peace and joy than to walk with someone into heaven. It is a rare and sacred moment and one in which you feel you can reach up and touch the face of God. We are simply vessels through which He makes Himself known to His children. Very humbling indeed.
My notes from Mama’s last days. I started to summarize certain parts regarding her bowels but since this is such an important thing to keep track of at that point, I decided to keep it in. Sorry if that creeps you out but if you’re caring for someone, it will become your reality so best to learn now!
Thursday, December 13, 2007 – six days before she died
Mama ate one pop tart for breakfast today. Mama has started this jerking with her hands and feet that she didn’t do before. After feeding mama this I went to Mannino’s pharmacy to pick up her new medicine and the emergency hospice medicine. There was no charge for it as Hospice paid for it. Went to Scott’s to pick up her Seroquel. It was $100. I put the Fentanyl pain patch on mama around 10 am. She’s having trouble swallowing more lately and was only able to eat a small bit of lunch. One of the medicines they gave mama is morphine for breakthrough pain which means that if the pain patch is not enough at times that we give her the morphine. I gave her morphine when she needed it at 1 p.m. and 9 p.m. Her Seroquel was doubled and she slept all night Thursday night.
Friday, December 14, 2007 – Noon last nourishment
Mama sat on the toilet twice in the morning but couldn’t go either time. Her jerking is worse and she’s was in terrible pain when she woke up at 8 and I gave her morphine then. She jerked her hand when she tried to hold her coffee so I tried to help her drink some by me holding it to her mouth but she couldn’t swallow any. She had no breakfast because Elaine (hospice) came shortly after that and mama was in so much pain that it took a long, long time for her bath and all. We gave her another dose of morphine at 9 am. and when that started working Elaine was able to finish mama’s bath. Mama drank about half an Ensure in the middle of the day. Her hospice nurse Kate came around lunch time and said all mama’s vital signs were good, her breathing was fine, blood pressure and pulse were fine. As mama had not had not gone to the bathroom since Sunday, December 9 when she had diarrhea we thought her painful reactions may be due to being constipated. Kate gave her an enema, and before leaving she inserted the catheter into mama at my request because it is so hard to get mama to the bathroom. Kate could see how mama is so out of it and in pain and said she thinks we called in Hospice just in time. Two hours after Kate left mama had not had a bowel movement so I called Hospice and they said to use a glycerin suppository to try to help it along. Roy went to Scott’s Pharmacy and got some for me. I used that and still nothing happened, so Hospice said to give her some Milk of Magnesia to try to help it from the other end. She was in terrible pain, crying but not saying actual words and her voice does not sound like her at all. Her body is so rigid and jerking. It is absolutely horrible watching this sudden change in mama and I have been crying all afternoon at the realization that my mother is now actually dying. I don’t let her see me like this because I want so much for her to be peaceful and not worried. She cannot swallow anything and can not eat anything. I gave her morphine at 1:10 and 2:40. I spoke to Kate in the late afternoon and she said Dr. Williams said it’s okay to give mama 2 xanax 3 times a day to help with her agitation. I asked her if mama’s inability to eat and all these changes mean the end is near. We previously made the decision to not have a feeding tube inserted if she stopped eating so I told her that if stopping feeding her would help mama be able to die without lingering in pain we wanted to do that. She said they would support us in that decision. Still none of the fluid from the enema has come out. Her catheter bag does have urine in it, though not much and it is dark reddish brown. I emailed Chad and Amy and talked to Chad during the day on the phone about Grannie’s condition. I need Chad to come be with us for me and he needs to be here for Grannie. He and Amy came to see her in the evening and Chad read scripture to her which was such an amazing spiritually uplifting thing for me and I know for mama. They stayed and watched a movie with us and went back home. I gave mama 2 xanax, 2 Seroquel at bedtime and she had a terrible time swallowing them.
Saturday, December 15, 2007
Mama was asleep when we woke and she woke up around 9:30 so I put Vaseline on her lips and moistened her mouth with the swab. Harriett came around 10 and when mama woke up she was stiff, jerking, terrified looking and not saying anything understandable. She had morphine at 10:15, 11:40, 12:30, 1:30 and 2:27. It was difficult to wait the whole hour before giving her more morphine because she’s in such pain. Roy went to get her some Milk of Magnesia and in the afternoon we gave it to her. She couldn’t swallow it and struggled to get 2 tablespoons full down. She is waking up in such pain and such agitation that I called the nurse around 2:30 to see if I could increase the morphine to 1 cc which the nurse said was okay and mama took at 3:31, 5:15 and 7:00. At 7 I gave her the night time Xanax and Seroquel and she slept through the night.
Her nurse said to grind up her pills to make them easier to swallow. Our son Chip and his fiance Liz came over. Roy and Chip going to buy suits since we know her funeral will be soon and groceries. Liz went to the pharmacy to pick up cream for mama’s itching. I cooked chili for Roy, Chip, Liz and me. Chip was able to have some private time with Grannie. She was so very special to both of our boys that their presence is very special to her.
Sunday, December 16, 2007
I woke around 7 and heard on the monitor that mother was snoring so I took a bath and got ready for church. Before leaving I heard her awake and went to her room. Her eyes were open and her arms were held out to the side, stiff as a board. Her hands were cold so I put socks on them to keep them warm. I changed her foot socks and put two pairs on to keep her warm. I put Vaseline on her lips and swabbed her mouth. She was only able to make sounds and was obviously in pain. I ground up her Xanax and Lexapro and put the powder on her tongue, then gave her the morphine which she was able to swallow. When I returned from church Roy said she had slept the whole time. Harriett came over after church and mama slept the whole time, waking just slightly a couple of times. Around 4:30 mama woke a little more so I put Vaseline on her lips and swabbed her mouth again, put some vaginal cream on her so she wouldn’t itch and laid her arms under the covers. I put on some Pan Flute Christmas music for her to listen to and she made gurgling sounds for a while. I put her head up a little higher to try to help with that. In the evening her breathing is a lot more gurgly and irregular. She opened her eyes for a little bit and was in pain so I gave her morphine around 5:30.
Roy came into the room with mama and I and said a prayer for her about what a wonderful mother and grandmother she’s been to us and prayed that God would take her to Heaven so she would not have to suffer. He never ceases to amaze me. He’s been absolutely wonderful to mama while she’s been here and has helped in countless ways. Around 7 mama was trying to reach her arm across her body so I shifted her body to her side and put a pillow between her legs. I removed her teeth to soak and ground up her sleeping medicine and Xanax and gave it to her. She seemed to fall asleep immediately and looked very comfortable which she hasn’t looked recently.
That is the end of my documenting and I wish deeply I had continued to the end. The day she died, we could tell it was near the end because her finger nails started turning blue, when you raised the blanket it smelled bad which is a sign her organs have shut down, she gurgled a lot, and her breathing got more and more irregular until it stopped. Mama died on December 19th at our home with her family holding hands standing and sitting around her.
END OF LIFE SIGNS, THE DYING PROCESS
THE ARTICLE BELOW AND MANY MORE END OF LIFE RESOURCES CAN BE FOUND AT:
The dying process usually begins well before death actually occurs.
Death is a personal journey that each individual approaches in their own unique way. Nothing is concrete, nothing is set in stone. There are many paths one can take on this journey but all lead to the same destination.
As one comes close to death, a process begins; a journey from the known life of this world to the unknown of what lies ahead. As that process begins, a person starts on a mental path of discovery, comprehending that death will indeed occur and believing in their own mortality. The journey ultimately leads to the physical departure from the body.
There are milestones along this journey. Because everyone experiences death in their own unique way, not everyone will stop at each milestone. Some may hit only a few while another may stop at each one, taking their time along the way. Some may take months to reach their destination, others will take only days. We will discuss what has been found through research to be the journey most take, always keeping in mind that the journey is subject to the individual traveler.
The Journey Begins: One to Three Months Prior to Death
As one begins to accept their mortality and realizes that death is approaching, they may begin to withdraw from their surroundings. They are beginning the process of separating from the world and those in it. They may decline visits from friends, neighbors, and even family members. When they do accept visitors, they may be difficult to interact with and care for. They are beginning to contemplate their life and revisit old memories. They may be evaluating how they lived their life and sorting through any regrets. They may also undertake the five tasks of dying.
The dying person may experience reduced appetite and weight loss as the body begins to slow down. The body doesn’t need the energy from food that it once did. The dying person may be sleeping more now and not engaging in activities they once enjoyed. They no longer need the nourishment from food they once did. The body does a wonderful thing during this time as altered body chemistry produces a mild sense of euphoria. They are neither hungry nor thirsty and are not suffering in any way by not eating. It is an expected part of the journey they have begun.
One to Two Weeks Prior to Death
This is the time during the journey that one begins to sleep most of the time. Disorientation is common and altered senses of perception can be expected. One may experience delusions, such as fearing hidden enemies or feeling invincible.
The dying person may also experience hallucinations, sometimes seeing or speaking to people that aren’t there. Often times these are people that have already died. Some may see this as the veil being lifted between this life and the next. The person may pick at their sheets and clothing in a state of agitation. Movements and actions may seem aimless and make no sense to others. They are moving further away from life on this earth.
The body is having a more difficult time maintaining itself. There are signs that the body may show during this time:
The body temperature lowers by a degree or more.
The blood pressure lowers.
The pulse becomes irregular and may slow down or speed up.
There is increased perspiration.
Skin color changes as circulation becomes diminished. This is often more noticeable in the lips and nail beds as they become pale and bluish.
Breathing changes occur, often becoming more rapid and labored. Congestion may also occur causing a rattling sound and cough.
Speaking decreases and eventually stops altogether.
Journey’s End: A Couple of Days to Hours Prior to Death
The person is moving closer towards death. There may be a surge of energy as they get nearer. They may want to get out of bed and talk to loved ones, or ask for food after days of no appetite. This surge of energy may be quite a bit less noticeable but is usually used as a dying person’s final physical expression before moving on.
The surge of energy is usually short, and the previous signs become more pronounced as death approaches. Breathing becomes more irregular and often slower. “Cheyne-Stokes” breathing, rapid breathes followed by periods of no breathing at all, may occur. Congestion in the airway can increase causing loud, rattled breathing.
Hands and feet may become blotchy and purplish (mottled). This mottling may slowly work its way up the arms and legs. Lips and nail beds are bluish or purple. The person usually becomes unresponsive and may have their eyes open or semi-open but not seeing their surroundings. It is widely believed that hearing is the last sense to go so it is recommended that loved ones sit with and talk to the dying during this time.
Eventually, breathing will cease altogether and the heart stops. Death has occurred.
Please come back next time when I’ll share more topics about end of life care including Hospice, Letting Go and Getting things in order. If you want to get an email whenever I post a blog (I write about other things, not just Alzheimer’s) find the “FOLLOW” box which is usually to the right hand side somewhere, enter your email and respond when the confirmation email is sent to you.
If you are in need of prayer for yourself, in your role as a caregiver, or if you have any specific questions please send me a comment with whatever information you want to share or ask about. I’ll say again that I’m not expert, but I probably experienced with my mom a lot of things you’re going through and will try my best to help. If I don’t know the answer I will tell you I don’t know. I’ll never judge, I’ve been judged enough to last a life time and would never do that to someone else. My email address is firstname.lastname@example.org if that is an easier way to communicate.