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

 

 

02.10.18 Some Things I Learned About Dementia – Love them, be kind to them, be sweet even childlike sweet originally published 12.19.14

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.

10609479_773060536095512_770022682920397739_nNothing 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.

BE LOVING

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 she10734192_10152473918576198_829463759479924163_n 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.

10606322_770140433054189_4461898516402014795_nWhen 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.

index 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 rosalyn@selu.edu if that is an easier way to communicate.

Until next time,

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Click on the links below to go there!

Dora and the Explorers published randomly

Wacky Wonderful Wednesdays  published every Wednesday

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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Dora and the Explorers published randomly

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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

cooltext1838781539

Click on the links below to go there!

Dora and the Explorers published randomly

Wacky Wonderful Wednesdays published randomly