02.17.18 We’re Moving – Some Things I Learned About Dementia!

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!

The web address for Dora and the Explorers is http://rosalynandroy.com

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

 

 

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02.09.18 Some Things I Learned About Dementia – You’re Loved One is Changing. The Question is, are you? by Rick Phelps —

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.

It’s not there anymore. And it never will be….

© Rick Phelps 2018

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02.05.18 Some Things I Learned About Dementia – Devoted Son Finds A Clever Way To Help His Dad Battle Alzheimer’s originally published 02.23.17

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.

Listen to Ted sing by clicking HERE:

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!

From GodVine at http://www.godvine.com/

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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 rosalyn@selu.edu 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!

Until next time,

psalm-95-1

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02.01.18 Some Things I Learned About Dementia – Caregivers Prayer

A Caregivers Prayer
Beautiful, simple, inspiring.

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,
considering.

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,
including me.

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.

Thank you.

SOURCE:
(c) Frena Gray-Davidson
Author of “Alzheimer’s 911”
Help, Hope, and Healing for the Caregiver
Robert D. Reed Publishers
http://www.rdpublishers.com
Until next time!

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01.26.18 Some Things I Learned About Dementia – Learning about their youth and Knowing their Passions to help them cope – originally published 12.26.14

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! relxmas1We really hope everyone had a blessed Christmas day! Continue reading

01.22.18 How I Stopped My Mother (who has Dementia) from being Mean to me, by Bob DeMarco

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

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.”

It hurt.

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?

Related Articles

10 Things a Person Living with Dementia Would Tell You If They Could

When Dementia Patients Say Mean Things, What Can You Do?

The Effect of Emotional Super Glue in Alzheimer’s Care

How Do You Get an Alzheimer’s Patient to Cooperate

Dementia Patients Can Deceive Others to the Distress of Their Caregiver

Podcasts

How to Listen to an Alzheimer’s Patient (Support Podcast Health)

How to Change Patterns of Behavior in Alzheimer’s and Dementia Patients

01.14.18 Some Thing I Learned About Dementia – Dementia End of Life and Mama’s last days originally published 02.17.15

More Glimpses of Heaven: Inspiring True Stories of Hope and Peace at the End of Life's Journey by [Harris RN, Trudy]

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.

Finishing Well for the Glory of God, Strategies from a Christian Physician, by John Dunlop, MD

While I still can by Rick Phelps, a dementia patient and founder of Memory People on Facebook

Still Alice by Lisa Genova, This one is also a movie

The 36 Hour Day, A family guide to caring for people who have Alzheimer Disease, Other Dementias and Memory Loss, by Nancy L. Mace and Peter V. Rabins

Glimpses of Heaven: True Stories of Hope and Peace at the End of Life’s Journey by Trudy Harris, RN

More Glimpses of Heaven: True Stories of Hope and Peace at the End of Life’s Journey by Trudy Harrison, RN

 

USE END OF LIFE

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.

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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.

end of lifeWhile 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.

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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 USE END OF LIFE 2 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.

fancydivider1My 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 in bed nacho
THIS PICTURE WAS TAKEN ONE WEEK BEFORE I BEGAN DOCUMENTING MAMA’S LAST WEEK. I HOPE IT WILL SHOW YOU HOW FAST THEY CAN GO FROM SMILING AND COMMUNICATING A LITTLE TO ABSOLUTE ZERO. ALSO SHE NEVER LET ME HAVE A DOG GROWING UP BUT WHEN SHE WAS GOING THROUGH ALZHEIMER’S SHE DECIDED OUR DOG, NACHO, WAS HERS AND NACHO BECAME HER BEST FRIEND.

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 reindeer ears
I PROBABLY INCLUDED THIS PICTURE BEFORE BUT SINCE IT WAS TAKEN LATE IN NOVEMBER AND SHE DIED IN MID DECEMBER I WANT TO INCLUDE IT AGAIN NOW. SHE DID NOT KNOW WHO EVERYONE IN OUR FAMILY THAT DAY – THANKSGIVING DAY – BUT SHE COULD TALK, SMILE, LAUGH AND INTERACT A BIT.

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.

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END OF LIFE SIGNS, THE DYING PROCESS

THE ARTICLE BELOW AND MANY MORE END OF LIFE RESOURCES CAN BE FOUND AT:

http://dying.about.com/od/thedyingprocess/a/process.htm

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

Mental Changes

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.

Physical Changes

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.

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Please come back next time when I’ll share more topics about end of life care including Hospice, 10919059_10152982586361740_4239672769227388113_nLetting 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 rosalyn@selu.edu if that is an easier way to communicate.

Until next time,
matthew 11 28

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Click on the links below to go there!

Dora and the Explorers published randomly

Wacky Wonderful Wednesdays  published every Wednesday

 

01.10.18 Some Things I Learned About Dementia – My sisters memories, Feeding tubes and Kleenex published 03.13.15

Wednesday, January 10, 2018 –  Today is my amazing husband Roy’s birthday!  Happy 67th Birthday Honey!!

I go back to Dr. Morgan, the new (maybe) neurologist next week.  I’ve been on the new medicine she prescribed for me for the last three weeks.  My focus and energy level are better.  My memory of recent events, learning (and retaining) new things, and knowing what things are called has not improved at all.  We’ll see what she says at the visit.

Christmas with our sons and their family went well.  The love that comes out of those little ones is the very best medicine for me.  Hearing them constantly say “Grannie this” or “Grannie that” soothes me and ramps up my happiness so much.

Even though the original blog below starts with “This will be the last blog ….” it obviously was not.  Even after writing about everything I knew from caring for Mama I found articles that I believed important enough to share.

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Original blog from 03.13.15 – This will be the last blog I will publish on a regular basis about Alzheimer’s.  I’ve basically covered all the important things I wanted to pass along and have actually lost all the material I collected from other sources.  I must have trashed the wrong file and in WordPress there is no trash bin to retrieve things out of!  I will continue to pass along information I find informative from the various places I subscribe to about dementia.

As my own story progresses I will share with ya’ll.  One thing I recently did was to have my hand scanned to find out what essential oils my body needs.  The two main ones were grapefruit oil which helps your brain and coriander which helps diabetes and other things.  I’ve been putting 3 drops of grapefruit oil in a large glass of ice water every morning and drinking it.  I asked the doctor to be sure it was okay and they said it’s okay.

A while back I asked my sister to share with me what she remembers about our mom and her time with Alzheimer’s.  I’m not going to edit it, just present it as she told it.  Below that I am including a couple my own thoughts that may help someone.

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By:  Harriett Roussel   When she was in her home and I would visit, she gradually became not her usual talkative self. She complained that people asked too many questions. She would get especially upset when Pat called (her long time close friend).  I guess she didn’t know the answers and couldn’t remember who Pat was referring to.

I always found the microwave very dirty with boiled over coffee.  She forgot how to operate it. Also the same 10931306_1097965880229685_8471053185574325462_nwith the dishwasher.  I would find up to 17 capsules of dishwasher cleaner thrown in and she would never turn it on.  Sometimes she would remember to put the dishes away (dirty of course).  One time she tried to open a tin of danish cookies with a knife.  She punched a hole in the lid and peeled some of it away.  It’s a miracle she didn’t cut herself.

My first real shock was when I told her I was coming but she didn’t know who it was at her door. When she finally let me in, she said she didn’t know I was coming but Harriett would be there later.  Maybe this was the first time she thought I was her sister.  I had come to dress her arm but could not find the bandages for she had put them in a very odd place.

It’s interesting how the brain doesn’t work at times,  for when I would call her, mother, she couldn’t make the connection that I was her child.

I also found that food I brought never moved from the spot in the fridge where it was  placed.  It really hurt to think she was not eating.  When I would put food in front of her, she would eat and really express delight that I brought something.By the time she was at the Village, Assisted Living Facility, she certainly didn’t know where she was and who visited.  I could come right after he brother Aubrey and she wouldn’t remember he had been there.  One time she kept calling for Chip, her grandson, and when I told her he wasn’t there, she said he was but just wasn’t listening.

I always thought I had brought her enough snacks but when I returned a few days later, they were all gone.

I tried to remember that even though she didn’t know me, her face would always light up with a wide smile when she saw me. I will always be grateful that she knew you and that brought her great comfort.

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About feeding tubes.  There does come a time in the natural progression of a body dying that they no longer desire nor need food.  In case you do not have hospice and that time comes, I urge you to not insert a feeding tube.  When the body is trying to shut down I’ve been told it is actually painful to the person to receive food.  You think you are doing the right thing.  How could you possibly not feed your loved one when there’s a way to do it, right?   Here are a 10550869_798241600244072_4872256279882376078_n couple of  links to articles where this is described better.

http://well.blogs.nytimes.com/2014/08/21/food-and-the-dying-patient/?_r=0

Artificial Nutrition and Hydration at the End of Life: Beneficial or Harmful?

Some of ya’ll may choose to not read through all that so I’ll include a brief quote from the second article:

10013906_10152873429361718_2039051400472671846_nMyth: A person with advanced disease or a terminal illness who stops eating will “starve to death” painfully.

Fact: When a person with advanced disease or a terminal illness stops eating, usually it is because his/her disease has progressed to the point where the person is no longer able to process food and fluids as does a healthy person.  Forcing this person to eat, or starting artificial nutrition and hydration does not help the person to live longer, feel better, feel stronger, or be able to do more.  In fact, such a person given artificial nutrition and/or hydration will often feel bloated, nauseated, and/or develop diarrhea.  Studies have shown that the majority of dying patients never experience hunger, and in those who do, small amounts of food and fluids, offered whenever the person wants, relieves the hunger.

Mama stopped eating about a week before she died.  They say that it usually takes two weeks from the time they stop taking in nutrition.  A friend of mine whose mom died from Alzheimer’s lasted well past two weeks.  Each person is different.  If allowed to die naturally you are doing the very best thing you can for your loved one.  I firmly believe that.

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Kleenex – oh the many dozens of boxes of Kleenex Mama went through was eventually hillarious!  We all bought her1466202_537448149725518_6129419143299088950_n cases of Kleenex for Christmas the last year.  She wrapped everything in Kleenex and fidgeted with that Kleenex all the time.  Her glasses were thrown away in the Kleenex.  She’d wrap each piece in  bowl of fruit with Kleenex.  The thing was once she put it in the Kleenex she didn’t know where the thing inside had gone. The first year she did that was thought it was terribly strange and couldn’t see the point of constantly buying Kleenex.  But we did and the last few months she continued to wrap and fiddle with it all the time.  She did use it for its intended purpose often, since her nose seemed to continually drip and we never could determine what caused that.  So we just kept buying Kleenex.  I’ve heard this same thing from several others whose family member had Alzheimer’s so I believe it may be something you’ll eventually see your loved one do.

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If you want to get an email whenever I do 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 rosalyn@selu.edu if that is an easier way to communicate.

Until next time,

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cooltext1838781539

Click on the links below to go there!

Dora and the Explorers published randomly

Wacky Wonderful Wednesdays  published randomly

01.06.18 Some Things I Learned About Dementia – Mama’s interesting conversation published 01.09.15

mama reindeer ears
Mama at Thanksgiving, a very good day for her with all her family around her. She loved these reindeer ears so we let her wear them. The dialog below occurred around this time.

January 6, 2018 – It’s hard to believe that this conversation mama had with herself was over 10 years ago.  It was November, 2007 and she died in December, 2007.  I loved that special lady so much.  Her dementia journey did not cover years (so thankful for that) though we realized she probably had it for quite a while before we caught on. She was kind, thoughtful and had such a pretty smile.

The only time she got mean was when the home health staff tried to bathe her.  I was given the evil eye because I was allowing that to happen.  Once the bath was over she went back to being wonderful.   I never saw that look from her in all my life before then.

She was even nice when she’d tell me that the people who lived upstairs (that was my husband and me) kept the house too cold.  She’d never liked dogs throughout her life but our dog Nacho became her best friend and slept on her bed with her.  She’d also feed mama’s food to Nacho using her own fork.  She’d tell me really quietly sometimes that the food she was fed wasn’t fit for a dog.  It was some of her favorite food that I had cooked throughout her life so we got a chuckle out of that.

Original Blog 01.09.15 – Roy and I are deep into constructing a new house which takes up lots of time. So for the next couple of months I’ll be posting this blog every other Friday.  Once the house is finished I’ll go back to weekly publishing!  Thanks for following our blog!

I planned to wait a bit before posting today’s dialog until you all knew my mom a bit better.  When I was putting the finishing touches on the original blog for today I kept thinking about this and realized this is what I’m suppose to share today.  Possibly someone out there needs to read it because their loved one is in this stage or nearing it.  The dialog below was fairly typical of a lot of evenings with mama during the last stage of Alzheimer’s.

I will believe these ramblings of mama’s will be very eye opening for some.  When I’ve referred to “this bizarre little world they live in” this is that world.  Sometimes these ramblings would go on for hours and skip a few days and then pick up day after day.  Having a baby monitor handy to take with me wherever I went I was able to get away from the constant rambling but still be in touch so I could step in if she really needed me.  If you have the money to buy a monitor with a video screen I’d say get that.  I didn’t have that but feel it would be a valuable tool in caring for them.

Something I want add here is that even though she doesn’t say it in this piece below she began calling her bed her “rack”.  Anytime she hollered out it would be something about getting her off “this rack”. Took a bit to make that connection but since she said it numerous times a day we figured it out!  Here we go with:

fancydivider1ONE EVENING IN NOVEMBER WITH MAMA

Sunday night November 18, 2007 – 9:35 p.m.

After me going into check on her twice when she’s called and Roy going in to check on her twice I went upstairs to our bedroom and I’ve been listening to mama talk through the baby monitor for about an hour now. Since I can’t go to sleep until she’s asleep I decided to type what she’s saying.

“Where is my chair. I can’t find my chair. Someone took my chair. They don’t have anything better to do than to take my chair.”

“I have so much to do and I never get finished. I have so much to do but I enjoy doing it. Sometimes I think I do too much but sometimes I enjoy it. Uhmmm… But I need to do it and I enjoy it. Uhmmm it hurts but I enjoy doing it. It hurts too.

10013906_10152873429361718_2039051400472671846_nIt hurts but I have to do a lot of stuff. But you know it’s good and you’re suppose to do it. But it’s hurting you when you have to do it. It hurts, because it’s something you’re suppose to do. You’re suppose to do it, you need to do it. You have to do so much. You need to do certain things. Whether you like it or want to do things but that’s the way it goes. Oh Lord help me to realize it. Certain things you got to do whether you like to or not. And it hurts whether you like to do it or not. Thank you Lord for giving me the common sense that things have to be done whether you want to or not. “

Long silence.

“So many things I need to get so many things off of my mind. And I need so badly to help and do things that I mainly would not like to do but Lord knows no I can’t do everything I want to. And I just can’t get everything done. NO and I can’t get everything done for everything. Ohhhh I know I can’t … but I gotta try. I need to try and I do try pretty hard sometimes. I do try. But it doesn’t always work out for me. It just doesn’t work for me. My mind just doesn’t work in that way for me. Ohhhhhh ……. I wish it didn’t. Lord Help Me. Oh I know the Lord would help me. I feel like I need to do. He knows what I need and I just can’t do it. And Lord you know I can only do so much and you know my feet and legs are just hurting so much. Help me please Lord, I can only do so much, ohhhhhhh. Help me Lord. Please help me.”

(I went downstairs to see if I could reassure her and if she needed something and she said “no, I’m fine” and then “thank you darling”.  I go back upstairs.)

“Lord Help Me please, I’m so limited in what I can do. I can only do so much and then….. , help me please. Lord help me please, cause I’m limited in what I can do. Ohhhh. My girls love me and I know they do but I can’t help it. I can’t help but cry. I can’t help it. I deserve to cry. “

(I went back downstairs and told her I loved her and covered her back up. She hollered “I love you” as I was leaving and I told her “I love you too.”)

She blew her nose

“I can’t believe it. I can’t help but cry. My ….. just hurts hurts hurts. And I can’t help it. Uhmmmm. My behind hurts too. My stomach hurts so bad. I don’t know why. But it hurts. I don’t know why. Uhmmmm. “

Long silence – She blew her nose.- Long silence.

“It hurts my behind so badly. Long silence. Oh it hurts so bad. Uhmmmm. I try to keep it from hurting but I can’t help it sometimes. Uhmmmm. But I try and it doesn’t always help. I wish somebody could help me to do that. It doesn’t help me though. No it doesn’t help a bit. Uhmmmm. Silence. (It’s 9:54 now.)

It didn’t help, not a bit. No matter how much you try to help it just doesn’t help. No matter how much you …. for it, it doesn’t help. It doesn’t help a bit. Silence. I d10805619_570046056465727_6872502226160874895_non’t think so. But it seems like it doesn’t matter, matter how much you try to help it but sometimes it doesn’t seem like it does. Sometimes…… and then it seems like it hurts more and more. And hurts and more and more and hurts. (She’s getting quieter now with more silence in between sentences.) I can’t help it, it seems like. Hurts more and more. It seems to be worse and worse. Sometimes they get worse and worse. I guess I can’t do anything about it. Uhmmmm. My knees get worse and worse too. And the dog gone feet they get worse and worse and worse. And my feet do to and I don’t know what to do. I can’t get them any better, I don’t know why they won’t get better. Feels like they get worse and worse, instead of better. Uhmmmm. They are getting worse NOW. I can’t get any better. They don’t get any better. I can’t get them any better. ………………

Somebody could come and help me. Somebody could come and help me a little bit and all that pretty chair all over there you could come and help me a little bit. (She starts getting louder.) Come and help a little bit it won’t kill you, it might make you feel better for helping somebody. Somebody it wouldn’t hurt you. I don’t think it would. I don’t think it would hurt you at all. It certainly wouldn’t……… Uhmmmm. I don’t think it would. Uhmmmm. A little bit of … wouldn’t hurt anybody. Uhmmmm. Uhmmmm. It never hurt, might not make you happy but it wouldn’t hurt you. It wouldn’t hurt at all. It wouldn’t hurt at all, it might not help you any but it wouldn’t hurt. They’re never busy, they’re just blabbing, blabbing, blabbing.

Oh, I lost a shoe (she doesn’t have any shoes on, just socks). Don’t know where my shoe is, well heck another shoe lost. Another shoe gone. Another shoe gone (she starts to cry). Oh where is my shoe. Somebody took my shoe or I lost it. I lost my shoe. Oh dog gone I lost another shoe. Uhmmmm. It hurts when I lose another shoe. Uhmmmm. I lost my other shoe. Oh what am I do, what am I do. Oh, I lost another shoe. Dog gone. Somebody come help me find it. I lost another shoe. Uhm, I can’t find it. I can’t find it. Somebody help me. Somebody come help me, please. I can’t find it. I can’t find my shoe. Ohhhh, they are hard to find. I can’t find it. Somebody can come and help me find them. Could somebody come help me find them. I might not, I’m gonna try. If somebody would I sure would appreciate it. Silence. I can’t find it no where. I can’t find it no where. Noooooowhere. My feet and toes hurt soooo baaaad. I can’t find it and can’t feel them anywhere.

Oh I wish I could. Is there anybody in the room? Rosie? I thought maybe there was one of the girls in the room. Rosie? Shoot I thought it was one of the girls. My …. was hurting so bad I thought it was one of you all. I needed to know who it was. And I couldn’t see and I didn’t know what to do. I didn’t know who it was and I just wanted to be sure. OHHHHH. I didn’t know who it was and I wanted to be sure.

(I go downstairs and peek in on her but she’s laying there smiling and quiet so I go back upstairs)

10897013_10152939097016740_8571813695345601818_nMy knees hurt so bad and I didn’t know who it was and I just wanted to be sure. I just wanted to be sure and my …… Somebody can help me if he can. Somebody will. Who is that touching on my feet (nobody). Is that somebody touching my feet? I hope it is somebody that is willing to help me for a few minutes. Why didn’t you answer me (sounds mad)? I don’t bite. Please somebody help me. Please somebody help me. Please somebody help me. I can’t get out of this rack. I can’t get out of this bed. Somebody please help me. Please. I can’t get out of this bed. I can’t get out of this bed. Somebody help me PLEASE. Don’t be so greedy. I’m not gonna hurt anybody.

I don’t hurt anybody and I don’t bite anybody and I’m not gonna hurt anybody but I would appreciate it if you would help me, just for a little few minutes.

(I went downstairs to see if there was really anything I could do and when I walked in and asked she said “no, I’m fine”. I said you were calling for help and she said “I was?” So I went back upstairs)

“I surely would appreciate it if somebody would help me. Rosalyn. Rosalyn. (She says calling me, loudly. I just went down there so I don’t go again.) Rosalyn. You don’t have but one mother in here calling for you. (Of course I go back down – her underpants and socks are off and she says she doesn’t know how that happened – I put new underpants and socks on her, tuck her in and tell her I’m going to go back upstairs and try to go back to sleep so maybe she’ll go to sleep.)

Never, never. ……. But it hurts and it hurts and it hurts. And you can’t do anything….. Uh hummmm. Nothing, 68191_540179176119082_3188283374700687354_nnothing, nothing. I tried so hard so many times. So many times. I’ve tried and tried so many times and it didn’t work. And I’ve tried and tried so many times and it didn’t work. It didn’t work, it didn’t work but I tried and tried and tried. But I really tried.”

Long Silence – sleep maybe?

“Who is it, who is it, who is it? Somebody say something. They’re taking the cover. We need it we need it cause it’s cold outside. We don’t need it, we need it rather because it’s getting colder outside, outside. Getting colder outside, outside all the time. It’s cold forever. …… somebody must have borrowed some of it. No somebody must have borrowed some of it. Somebody must have borrowed some of it cause some of it’s gone. Goodness sakes you never know, you never know.

Okay – enough typing – It’s 10:40 and she’s still talking so I’m going to bed and listen to her on the other monitor and pray she goes to sleep soon.

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The following is another brief ramble the next day.

Nap time on Monday – 1 p.m. Don’t turn it over like some people do. Please please please let people know you care about them. And when you can help somebody, they know it. And it means a lot to them. It hurts when you know. It burns some up when you don’t show that you care about them. It means a lot to them. You need to let them know…… I need to know. Somebody help me. Please somebody help me. I can’t get up.

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Please come back next time when I’ll share another aspect of Alzheimer’s to help you understand it better. 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 rosalyn@selu.edu if that is an easier way to communicate.

Until next time,

psalm 34 18

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