Can You Hear The Ring?

(singing) "Do You Hear What I Hear?" I love this Christmas song that talks about the caroling and bells at Christmas time. But that is not the ring that this blog will be about this time.

Nope, I made another boo boo. We were getting ready this morning and I was putting the food in the slow cooker. I took my ring off to wash my hands and when I was done, I washed them one more time before putting my ring back on. I went to slip the ring on my finger and it wouldn't go back on. It made it down to the second knuckle and became stuck on top. Then I realized the problem. Wrong hand. I had put the ring on the right finger, wrong hand.

They say when you marry someone that you become like each other, and I think that is true. (I also think some people who never marry can tend to look like their pet, but that is another story.) Both me and Sheri have smaller fingers on our left hand than the fingers on our right hand. Coincidence? I don't know, but it does seem weird to me to say the least. But I digress.

So we are supposed to be walking out of the house NOW and I'm standing there with a ring that won't go on, won't pull off. I explain to Sheri what I've done and she has me to go get the hand cream from the bedroom. She squeezes a generous blob onto my finger and has me try to remove the ring again. Waa Laah! It worked!

The ring came off and I washed the cream off and then put the ring on the correct hand and finger. That got me to thinking about something. My body wouldn't accept something that wasn't supposed to be there.

Mentally I'm trying to do the same thing. Neither the Hydrocephalus nor the Dementia feel like they are supposed to be there. They feel like foreign bodies fighting for a space in my head and The War Is On!

The loss of short term memory drives me nuts. I can do something one day and by the next I can't even remember doing it. Even if we talk about it each day it doesn't stick with me. I won't remember an event, or if I do, it is after Sheri has reminded me during my round of questions. I watch as she gets frustrated with me. We own a small business downtown and now that I am out on disability, I'll go in on a good day and help out, or at least that is my intention. From what I've read I think I need to do what I can to keep my mind sharp as possible. Most of the time I get things all tangled up and wind up with her basically giving me that look that says "move on or die" and I slink off to the safety of the back room.

I don't want this creature that is trying to take what I have. I didn't ask for it, but it won't leave. I can't find the "lotion" to get it to slide back out. A lot of people tell me that they are surprised with my diagnosis. Truth is I can hold it together for a few minutes when talking to someone, but if it goes over 10 or so, I'm sunk. And it seems like Sheri has to finish my sentences more often now.

That is why I like being able to still type the blog. I can take my time and think about the words and make corrections before I "publish" the blog. I think I do a pretty good job, but if you see mistakes, please just overlook them. I don't want an editor at this time to proofread anything for me. I used to do editing for book/story writers and it can be a challenge sometimes to work with someone else on a project.

I love social media and Facebook has provided some connections that help me to keep abreast of what is happening in the world of research. Seems like there are a lot of companies/people that have good ideas about what to do, but anything that may have a slight promise seems to be more on prevention than a cure. This means I may be stuck with the "ring on the wrong finger" for quite some time.

Let's pray that someone finds that cure and does it quickly. That way someone can hand me the bottle of lotion and this mess can slide off of my body and back into the pits of Hell where it belongs.

Please also take a moment to leave me a comment below and click on the "follow" button that should be located to the right of this blog on your screen. That way you will be notified each time I publish a new blog post..

Until then, remember, #EndAlz #AlzSux #HydroWarrior4Ever

Well, I'll Be Dog Gone

CHAIRMAN OF THE BORED

Let me introduce you to Trinny, our 95 pound pit bull that we rescued back in March of 2015. As you can tell, she rules the roost and sits in "people" seats instead of her own bedding when she can.

People talk about how bad and dangerous this breed is. NOT. We have 2 chihuahua's also. Now those dogs are bad and dangerous. They don't call them "ankle biters" for no reason. Trinny would rather give you "kisses" and play than anything else, unless it is getting doggie treats and special leftovers (no pork, no chocolate). 

When we got Trinny they thought she was around 3 years old. So now she is somewhere around 7 years old. The life expectancy of a pit is 8-15 years. I'm hoping she makes it more to the 15 side than the 8. She is my baby and I really can't think about that day when she is no longer here.

Why are you talking about your dog on this blog? Well, it's because like Trinny my life expectancy could very well be getting shorter. The NPH (normal pressure hydrocephalus) is stable right now, but the memory impairment in testing has shown to be increasing in recent tests. I still do pretty good most days. Short term memory is up and down, though more down a lot of days. I can also tell that I'm starting to slow down a bit more than I used to. Trinny used to love to play and would do it for a long time span, but now 5 or 10 minutes she is worn out. I'm also not able to go as long as I used to. I believe part of it is because of the shunt surgery last month and my body is trying to recover and find a "new normal" if there ever was one in the first place. But also it is harder to do some things that I used to enjoy. I love puzzles, but now Sudoku puzzles are hard for me to finish whereas I used to could do the hard levels and not blink. My concentration level is almost non existent.

Like I said, I don't look forward to the day when Trinny is no longer with me. It will be a hard thing to adjust to. We are used to snuggling up together sometimes. I have let her in the bed with us and she'll lay her head on my arm and put her paw on me as though to say "I'm here daddy." Other times I have laid down in the floor and wrapped my arm around her and just laid there with her watching the TV.

And it is the same with my wife. One of our favorite things to do when we first lay down in the bed is to face each other and talk for a few minutes, steal a good night kiss, and sometimes "spoon" for a bit before we settle in to our side of the bed. When we're walking through the store you'll often times see us holding hands, even when walking in from the parking lot. We hold hands at the table when we say the blessing before each meal. We sit at church and I'll have my arm around her almost the entire time we're in the congregation.

Having memories of someone or something when they pass is one thing, but not being able to have that physical contact is another. That is why people can't just "move on" when a loved one or a pet dies. They long for that personal touch, whether giving or receiving.

Dementia unfortunately robs people of that pleasure long before the body is no longer present. The patient will sit motionless, not emitting any emotions and not presenting any gestures towards anyone. When it is a parent or grandparent, you want them to reach out and wrap their arms around you, hold your hand, and talk to you and let you know they care and it will be ok. But it won't be ok. Once they move to the more advanced stages this disease will SUCK! You will lose everything you have experienced and enjoyed about this person, yet they will still be sitting in front of you. Almost like having someone die, but they are always in the casket by your side with the lid open, instead of being buried after a proper time passes.

If you are dealing with someone that has dementia, remember, You are still You. Nothing has changed, nor should it change. You'll adapt to your surroundings, and you'll succeed at doing it. It is them that is changing, not by their choice, but from the disease. Do what you can to help them retain as much as they can for as long as they can. Enjoy each touch, each word and each gesture while you can. When they no longer can, use the memory while they are in front of you and "relive" it while they are by your side. It isn't easy. There is NOTHING easy about this disease. It has to be the absolute closest thing to Hell On Earth that you'll go through. But at least you're going through it with someone you love, and not by yourself. And when you feel like you can't do it anymore, make sure that your support system knows it and is ready to step in and take a load off. You have to plan now to be ready then.

One day Trinny and myself will be gone. Will we be missed? I certainly hope so. But I also want those around me to be able to say "Man we sure had some good times right up to the end."

And if somehow, some way, some day they figure out how to stop or cure this mess, that works even better!

Until then, Remember #HydroWarrior4Ever #AlzSux #EndAlz

Life Sux, or Does it?

I agree. You start out in life, especially once you have finished your education goals feeling like you can take on the world. You know it all and you can't wait to share that knowledge with the world.
Then you get a job, marry, have a family and all of a sudden you realize that in the end you don't have the answers after all.
I want you to think the other way for a minute though. When you insert a straw it is generally to suck some liquid through the straw and into your mouth. You do this until the container you placed the straw in is empty, or, in the case of some really good milkshakes, too thick to move it through such a confined space.
But what if not all straws suck? What if they blow? Remember as a kid when you would be feeling goofy and instead of drinking through the straw, you blew in it instead, creating bubbles? Now granted, you really didn't add anything to the container but air, which had no new nutrients for you, but it was fun. At least it was for me. My mom used to get so frustrated at me sometimes when I would do it. "Keith Alan Moreland" she would holler from the other side of the table or room. Yep, when all 3 names come out you know your goose is cooked. I would giggle, and in turn she would eventually giggle and then I'd go back to drinking from the straw properly.
My question to you is "What if we did that to life? What if we start to blow instead of suck?" What if instead of letting our lives drain the energy and knowledge that we have, we start to find ways to keep it inside us, or at least add back in as it is taken out. When we feel like we have nothing left to give, what if we find ways to put things back in. Maybe that is the feeling of getting rest when we're tired. Or finding a way to add friends to our life. Real friends, not just Facebook friends. People who can help take some of the load off of you, perhaps teaching you ways to do it better.
I think we need to especially do the same with Dementia patients. It seems like our main focus is to add medications to the body to slow any progressions down, or help the patient cope with symptoms. While that is fine and dandy, (I'm on Namenda and Aricept myself), maybe we need to make the focus on how to add back to ourselves otherwise. "Oh, they can't do that anymore, so I don't try." Really, if your child can't do something, do you just let them walk away and quit? If you've lost of limb and can't do something anymore, do you just say, "Screw This" and skip any therapies? If you have had a heart attack or stroke, would you just lay down and wait to die????? I would surely hope not!!!!
I have something inside of me that is draining me constantly. I have Normal Pressure Hydrocephalus and it became bad enough that I have to have a shunt put in. This keeps the excess fluid in my head drained out so that the fluid doesn't do any additional damage hopefully to my brain. Notice I said "additional" as my neurologist said that my brain has taken such a beating over the last year before my shunt was put in that it will take a long time before it can ever get any healing to take place, possibly several years. NPH is also a form of dementia and we're hoping that it is the main cause of my dementia, though with my family history it is believed that I am dealing with some form of Early Onset Dementia. But while I hope that my body doesn't make more cerebral fluid than my shunt can keep up with, I also know that it will continue to add fluid that it needs to sustain life and protect my brain like it was designed to do. I didn't lay down and quit when it came to the NPH although at times I felt like it. I kept trying treatments and seeking medical advice while trying to pursue some sort of normalcy.
So why do we quit trying to make things better in ways other than medicine when there are cognitive declines?
Why don't we make therapies the focus? Keep up the medicine route as long as it shows a promise. Why don't we blow into the straw instead of letting the disease suck it out? Cognitive therapies are available all over and many insurance policies will cover it, including Medicare in the US for most people. I'm sure there are more activities that can be added. So what if you or your loved one messes up. Let them try again, even if they need to take a break until tomorrow. I believe that as long as people keep their minds busy with at least trying, even if they are not successful, then they can be stronger mentally for much longer.
I'm no doctor. I have no medical degree, but from what I know of my own experience, I believe that at least doing something keeps me feeling better and gives me a brighter attitude.
So I ask you today, Are you gonna let life suck, or are you gonna blow? I think even if life tries to suck, I'm gonna blow some REALLY BIG bubbles!!!!
And as always,
#EndAlz #AlzSux #HydroWarrior4Ever

ABC's of Dementia for Caregivers

Approach with a positive attitude, from the front with a smile. Address them by name.

Breathe. Take a deep breath before the visit/encounter. They can read your essence and body language before they can comprehend what you are saying.

Cue them. Instead of “Do you want to put on your sweater?” Put yours on, and offer help with hers.

Dementia is the umbrella term. Alzheimer’s, Lewy Body, Vascular, & Frontotemporal are types of dementia. Alzheimer’s is the most common type, diagnosed 70% of the time.

Every day is a new day. A bad day yesterday does not mean a bad day today. Take it one day at a time.

Follow their lead. If they want to tell the same story or wash the same dish over and over again, let them.

Give them purpose. Ask their advice, give them a task. Even if they do it wrong, they’ll feel worthy because they accomplished something.

Honor who they are and who they were. They had a good, productive life even though they may not be able to feed or dress themselves anymore.

Investigate. If they are agitated, they may not be able to tell you why. Are they hungry or thirsty? Tired? Do they have to go to the bathroom?

Joy. Revel in the joyful moments with your person with dementia. Let those moments fill you up.

Keep eye contact. It establishes trust and helps you make a connection.

Love. Give a lot of love to your person. It makes them feel safe and cared for.

Mistakes. You will make them. You will say and do the wrong things. Forgive yourself. Caregiving is a very hard job.

Never argue with the person with dementia. It agitates them and you and makes everything harder.

Oxygen. Take your oxygen first. Like on an airplane. Care for yourself. If you are not a strong, healthy caregiver, you cannot be strong for your loved one.
Practice patience. It could take 20 seconds for someone with dementia to understand your question and come up with an answer.

Quiet. TV, radio, several conversations at once make it hard for the person to concentrate. Take them to a quiet place to visit or connect.

Redirect. If they are frustrated or upset, change the topic or environment, suggest an activity they like to do, or offer some tea or ice cream.

Simple. Keep sentences simple. Their brain processes differently and too many details will overwhelm them.

Talk about the old days, things from their past. As their short term memories go away, the long term memories remain.

Use fiblets. “I have to pick up my daughter from school!” says the 80 year old. “Your daughter called, she is staying late to play soccer. Let’s go in here and listen to some music…” Tell a little story and then redirect.

Validate their feelings and thoughts. “Yes, it is Tuesday (even if it’s Friday) but today we are going to do a Friday activity.” Goes along with *not* telling them they are wrong.

Walk in their shoes. Just as you do not want them to be sick, they don’t want this disease. Realize they are frustrated too, because they can’t do things or remember things like they used to be able to.
eXercise. Go for a walk with your person with dementia. Or do chair exercises. Getting the blood flowing is good for the heart and brain.

You are not alone. There are many resources out there. Support groups, caregiving courses. You just need to make the first move.

Zzzz’s. Let them rest. This disease is exhausting, for both of you. You rest, too.

Written by:
Kristen Cusato who is an Alzheimer’s advocate, educator and former caregiver for her mother.