Being Scared (written by Kiefer)

For the first time in a very long time, I can say I am scared. As many of you know I am the silent, tough type and in my family you hardly hear me speak
my true feelings about something. Even writing this, letting everyone know I am scared to lose my father is hard. Being scared it's a bad thing, it just letting you know you care about something so much you never want to lose it. And for me the thought of losing my father never came to mind until
I found out what was wrong with him. So now not only do I have to learn how to live with him slowly forgetting things. I also have to learn how to live with losing him.
My dad and I weren't very close growing up. I personally thought I would have more time to fix that. But now it feels like it will never change. Which is hard for me. Cause I was never really close to his side of the family, so he was the only way to see what  they were like. I want to ask him so many questions about his parents, cause I never know who they were. But now I feel like he may not
remember the little details about them that I so dearly want to know.
The moral of this, is that if you are scared to lose someone. Spend time with them before it is too late.
Make memories and hold on to them no matter what. Ask them the questions that are burning a whole in your head. Fix the things that cause fights. Make sure that your relationship with that person is everything you ever wanted it to be. 'Cause one day you may lose them, so do things before it's to late. Otherwise you will be sitting here like me wondering what you could have done differently in your life to make things easier.
But most importantly no matter what happens, make sure that the person you scared to lose knows you LOVE them.
That is the MOST important thing you can do. Tell them everyday, one day they may forget.

Held

So I'm sitting her in the hospital room with my mom, passing time as her sleeps after having an ERCP done because her common bile duct was blocked with all kinds of yucky stuff. And I think to my self how thankful I am that my parents now live in Sioux Falls and not Custer as they did three years ago. If they had not moved I would have spent 7 hours driving to get to her and worrying the whole way there.

Why is it that when something "bad" happens we immediately get fearful, instead of praying and trusting God that He is in control. Is it because it's human nature or is it because we say we trust God but don't know how to do it? For me it's because I don't know how to truly trust God. I try to but it's difficult and hard because I'm so busy trying to hold everything and everyone together, to be strong because that's what mom's ( who are caregivers) are suppose to do.

It's been a busy couple of days, especially with the snow, I've been spending time at the hospital plus driving my dad back and forth because I don't trust him on the roads. Tonight after I dropped dad off at his apartment and started driving toward my house to pick up a few things before heading back to the hospital for the night the song "Just Be Held" by Casting Crowns came on the radio. I've heard the song numerous times but tonight the words became more evident that they had ever been before.

All I need to do is let go and let God HOLD me. Take my eyes off the storm and everything that is going on around me and know that I know He is still on the throne and all I need to do is set my eyes on the cross and the One who is in control. God's arms are hugging me tight in the mist of everything. I just need to accept His hugs and trust in him and everything will be alright.
Jeremiah 29:11 "For I know the plans"

I pulled in the Hy-Vee parking lot and let the tears flow, like they haven't for a long time, just letting the loving arms of my Savior hold me tight . What a wonderful feeling to be held like I've never been held before.

Hold it all together
Everybody needs you strong
But life hits you out of nowhere
And barely leaves you holding on

And when you're tired of fighting
Chained by your control
There's freedom in surrender
Lay it down and let it go

So when you're on your knees and answers seem so far away
You're not alone, stop holding on and just be held
Your worlds not falling apart, its falling into place
I'm on the throne, stop holding on and just be held
Just be held, just be held

If your eyes are on the storm
You'll wonder if I love you still
But if your eyes are on the cross
You'll know I always have and I always will

And not a tear is wasted
In time, you'll understand
I'm painting beauty with the ashes
Your life is in My hands

Lift your hands, lift your eyes
In the storm is where you'll find Me
And where you are, I'll hold your heart
I'll hold your heart
Come to Me, find your rest
In the arms of the God who wont let go

A Son's Perspective (written by Kiefer)

As many of you know this is my mother’s  blog. But a few weeks ago she asked me if I would write one for her. I told her I would think about it, as I didn't know what to say. I still don't. But I thought I would give it a try.

Living with a father that will one day forget who you are is the hardest thing I have had to face. Which coming from me is saying something. I have had to face many hard things in my short 21 years. Such as not knowing family members, seeing family members die too young and being taken from your family without a say.  There is nothing more terrifying than knowing your dad will not remember you one day. But even more painful than that, is knowing my future kids will not know him the way I will remember him.

Some people say you need to trust God and know that he has a plan. Which is very hard for me to do, as I do believe there is a God but he is not the one everyone thinks he is.

I guess the easiest way to deal with something like this is to find inner peace. As humans we want everything to go perfectly but that will never happen. So the best thing to do is enjoy the moments you have with someone, the good and the bad. And always remember that people will come and go from you life. But memories are forever. As far as the future kids go, I'm going to do my best to be how my father was with me. Always there and always making sure they have everything they need. If they ask about their grandpa, I will spare no detail and tell them how great of a man he was. He dad is my hero and I am scared to find out what life without him will be like.

Is It Worth IT?

So I write and rewrite these blogs wondering if any of them make sense and if  people are really interested in what I write or am I just wasting my time and effort. And then my to wise for his years 21 year old son Kiefer comes home and says that my blogs make sense to him and have helped him with his life.


Kiefer has gone through some major difficulties in his short 21 years, more than most 21 year olds. He's at the point  of not being sure what he wants to do with his life, but also so sure that he wants to do sound and lighting, like his older brother Nich. Kiefer has been on tour with bands and also worked for people who do sound and lighting and he has loved it. Especially the lightening side of the business. He has also had issues with friends and acquaintances as of late. 


If you have sons like mine when they talk you listen because they don't talk that often. Kiefer and I have had some of our greatest and deepest conservations via text message. And then occasionally Kiefer decides that we'll have a discussion in person. Which is exactly what he did after reading my last blog.


Per Kiefer, " No matter what happens in life, his dad will always he his dad and Kiefer will always be Kiefer". "It doesn't matter what people/acquaintances say or do, yes it hurts for a while and makes you mad, but you can't change them." "If you truly love someone, you'll always love them not matter if they are a part of your life or not, you need to be thankful for what and who you have in your life, for the time that you have it/them."


Since Kiefer and I had this deep discussion I have seen a change in him. He more calm and doesn't get upset as easily as he did, he's also willing to talk things out and not get angry right away. I saw these changes but really noticed them after he quit is job to move to Minneapolis and then at the last minute things fell through. Yes he was disappointed but he did not get angry and yell like I have seen him do in the past. He has stayed calm for the last three weeks while looking for a job and is more that excited to start his new job an Monday.


So is it worth it for me to write and rewrite these blogs. YES..... if I can make the difference in one person that it is so worth it.

Still Greg

So on September 25th Greg and I will not only celebrate 34 years of marriage, but we will also celebrate the 1 year anniversary of his diagnosis. It's rather ironic that two of the major changes in both of our lives fall on the same day.

When we got married both of our lives changes. I had never lived away from home and my plans to attend nursing school after graduating high school were put on hold for a few years. We moved to Rapid City (or I should say I moved) because Greg was stationed at Ellsworth Air Force Base. We set up house in an apartment (actually we moved three times in less than a  year) with Greg working at the Air Base and me trying to find things to do all day long, as I was not working. Little did we know that I would become pregnant on our honeymoon and that 9 months later Trevor would enter our world and completely change it or that his 4 brothers, Nich, Elliott, Bryce and Kiefer would follow; each would add their own unique love and challenges to our world.

When  Greg received the diagnosis of FTD our world and lives changed yet again. In good ways and in bad ways. We continue to celebrate each day, because you never know what tomorrow brings. We do what we have to do and go on with life because we try not to let FTD control our lives. Greg is STILL Greg he just does and says things differently. He might not remember what day it is, what time it is, what the name of something is, what your name is or  if he feed the dog. But he is still the man that I fell in love with and still love to this day.
Yes along the way there have been trials, tests, hugs, tears, joy, pain, frustration, insecurities, appreciation, deaths, ups and  downs. Would I change any of it, NO. Because  I still have Greg in my life. I know that someday Greg will not be here, the time and place is not for me/us to know. I just have to thank my Lord and Savior for each day that I get to spend with Greg. Greg will tell you that he is ready to go home (heaven), but I'm not ready for him to leave. Greg and I have to thank his former co-worker Scott Batterman for inviting Greg and I to church and also JoAnn Barta (Holst), Greg and I both became saved because for her wonderful testimony about her 1st husband Galen. I also need to thank my sister Kim, she prayed for many years for Greg and I to get saved. Without theses people in our lives (plus many other people, to numerous to list) Greg and I would not be who we are in Christ today, and our children would not be who they are.

Over the last few weeks the word to the following song has come to mean a lot to me, I hope that it touches  you like it has touched me.  For no matter how we change God is still God and will be until He returns.


"Through All Of It"
by Colton Dixon

There are days I've taken more than I can give
And there are choices that I made
That I wouldn't make again
I've had my share of laughter
Of tears and troubled times
This is has been the story of my life

I have won and I have lost
I got it right sometimes
But sometimes I did not
Life's been a journey
I've seen joy, I've seen regret
Oh and You have been my God
Through all of it

You were there when it all came down on me
And I was blinded by my fear
And I struggled to believe
But in those unclear moments
You were the one keeping me strong
This is how my story's always gone

I have won and I have lost
I got it right sometimes
But sometimes I did not
Life's been a journey
I've seen joy, I've seen regret
Oh and You have been my God
Through all of it
Through all of it

And this is who You are
More constant than the stars up in the sky
All these years of our lives
I, I look back and I see You
Right now I still do
And I'm always going to

I have won and I have lost
I got it right sometimes
But sometimes I did not
Life's been a journey
I've seen joy
I've seen regret
Oh and You have been my God
Through all of it
Oh and You have been my God
Through all of it
Oh and You have been my God
Through all of it

Mom You Did What?????

So for years I said that I would never get a tattoo. 
Tattoos were dumb, what good were they, but then I never really had a reason to get one,  well this week (with Kiefer's help) I took the plunge and got one.

A got a tattoo not for myself but to show my love for Greg, my brother-in-law Marty and for so many other people that have affected my life in some way or another, whether those people are still here on earth or if they have gone on to heaven.

You see purple ribbons not only stand for Alzheimer's/Dementia, but they also stand for Loss (Grief), Pancreatic Cancer, Thyroid Cancer, Macular Degeneration, Migraines and oh so many more diseases and disorders, just Google it or look it up in Wikipedia. Those things listed are diseases or disorders that have affected many members of my or Greg's family.
This tattoo is a tangible way for me to always remember Greg, even when he no longer remembers me and to carry a part of him with me once he is gone.
Was I crazy to get a tattoo, maybe but it's done now and will cost way more to remove than it was to get it. Besides now you can always pick me out in a crowd.

 

Dementia vs Alzheimer's

I have been asked numerous, numerous times what is dementia. Is it the same as Alzheimer's or is it different? So with the help of the Alzheimer's Association and the Association for Frontotemporal Degeneration (AFTD),  I will try to explain the difference and what it means in our lives.

Dementia is not a specific disease rather it  is a general term for a decline in mental ability severe enough to interfere with daily life.  It's an overall term that describes a wide range of symptoms associated with a decline in memory or other thinking skills severe enough to reduce a person's ability to perform everyday activities. Memory loss is an example. Alzheimer's is the most common type of dementia and accounts for 60 to 80 percent of cases.

Greg specifically has Frontotemporal Dementia or FTD.

Frontotemporal dementia is one of the less common forms of dementia.

The word frontotemporal refers to the two lobes of the brain that are damaged in this form of dementia. The frontal lobes of the brain – situated behind the forehead – control behavior and emotions, particularly on the right side of the brain. They also control language, usually on the left. The temporal lobes – on either side of the brain – have many roles. On the left side, these lobes control the understanding of words. In Greg's case both lobes of his brain are affected.

Frontotemporal dementia is caused when nerve cells in the frontal and/or temporal lobes of the brain die and the pathways that connect them change. There is also some loss of important chemical messengers. Over time, the brain tissue in the frontal and temporal lobes shrinks. This damage to the brain causes the typical symptoms of frontotemporal dementia, which include changes in personality, behavior and difficulties with language.

Frontotemporal dementia occurs much less often than other forms of dementia (such as Alzheimer’s disease or vascular dementia). However, it is a significant cause of dementia in younger people (under the age of 65). Frontotemporal dementia is probably the third most common cause for people in this age group. It affects men and women about equally.

Frontotemporal dementia is most often diagnosed between the ages of 45 and 65, but it can also affect younger or older people. This is considerably younger than the age at which people are most often diagnosed with the more common types of dementia such as Alzheimer’s disease.

There are three types of FTD:

-----behavioral variant FTD

-----progressive non-fluent aphasia

------semantic dementia

We have never been told which type Greg has. In doing some research I have not been able to pin point which type I believe he has.

In contrast to Alzheimer’s disease, people with early-stage  frontotemporal dementia tend not to have problems with day-to-day memory or with visuospatial skills (judging relationships and distances between objects).  It is unusual for a person with frontotemporal dementia to be aware of the extent of their problems. The symptoms are more often noticed by the people close to them. As with most forms of dementia, the initial symptoms can be very subtle, but they slowly get worse as the disease progresses over several years. The rate of progression of frontotemporal dementia varies greatly, from less than two years to 10 years or more. Research shows that on average, people live for about eight years after the start of symptoms. As frontotemporal dementia progresses, the differences between the three types becomes less obvious.The cause of frontotemporal dementia is not known. Experts assume that the disease reflects a mixture of genetic, medical and lifestyle factors.
 
Autopsy studies show that the death of nerve cells in the frontal and temporal lobes is linked to clumps of abnormal proteins inside the cells, including one called tau. The tau protein may take the form of Pick bodies, which gave frontotemporal dementia its original name of Pick’s disease.
 
Frontotemporal dementia runs in families much more often than in the more common forms of dementia. About one third of people with it have some family history of dementia.

About 10–15 per cent of people with frontotemporal dementia have a strong family history of it, with several close relatives in different generations affected. In contrast, strongly inherited early-onset Alzheimer’s disease affects less than 1 in 1,000 people with Alzheimer’s. Typically in these cases, frontotemporal dementia is inherited from a parent as a defect (mutation) in one of three genes: MAPT, GRN or C9ORF72.
 
Frontotemporal dementia can be hard to diagnose, because it is uncommon and does not initially cause memory problems. Doctors may also not suspect dementia in a middle-aged person.

Frontotemporal dementia may be misdiagnosed as atypical Alzheimer’s disease (a form of Alzheimer’s disease without early memory loss). Behavioral symptoms may be mistaken for depression, schizophrenia or obsessive-compulsive disorder. Problems with language or movement may be misdiagnosed as stroke.
After a person dies, it is possible to make a pathological diagnosis of frontotemporal dementia as the changes to the brain can be directly seen at a post-mortem.
Researchers are working to find effective new treatments for frontotemporal dementia, but there is currently no cure and the progression of the disease cannot be slowed.

Greg is mainly affected with his short term memory and his language---he can not remember the names of common objects and he does a lot of word searching. 

Our biggest fear is that because FTD is thought to be inherited our sons will be diagnosed with FTD someday. I pray daily that they will find a cure for this disease and that there will be better awareness that Alzheimer's and dementia. I also pray that this curse will be will be broken so that future generations  do not have to be burdened with disease. 

A quote from Brenda Bernard, Greg's cousin

" How many of us are affected? Two relatives right now ... Already lost my dad and 2 uncles. What have I learned? Caregivers are gifts from God, but their journey is incredibly hard. Let's pray for their strength and a cure!!



 










 



 
 


 

Baby Steps

 

 

 

 

Baby Steps-----small, manageable movements forward. Baby steps are my friends.

 

Why do we take backward steps when we should be taking baby steps forward? Progress is made step by step by step by doing the little things.

 

 

God is teaching me that taking baby steps is better than taking no steps at all.

 

 

July 23rd Greg went for a "short half hour bike ride", which turned into 7 hours. He was found by the police after I filed a missing persons report. He ended up losing his cell phone, not knowing where he had lost it other that in "the grass in a yard". Hence we had to get him a new phone and are unable to track the new phone as it is not a smart phone.

August 3rd I had a flat tire on the truck,  Greg got upset, while helping me change the tire. He ended up storming off and taking the Weston for a walk. I ended up calling Kiefer to help. August 11th Greg lost his cell phone, he thought at the park when he had walked Weston. Off to the park we went, back home where Greg proceeded to start looking in the garage. I found the phone in the house in the recliner, went out to tell Greg and he was gone, jumped in the pick up to find him walking the neighborhood retracing his earlier route.

 

Through all of these instances God keeps telling me to take baby steps, no giant steps but baby steps. Baby steps are good things, when we were babies and first learned to walk we did't take big,  humongous steps, we took baby steps. I confiscated the tires off of both of Greg's bikes. I will give the tire back eventially so he can go riding again, but this time it will be with some one. I didn't take the joy of riding away from him I just adjusted how and when he will go riding.

 

I know that Greg's behavior is not something that I can change but how I react to the behavior is a baby step that I can take. I means that I have to learn patience and how to control my behavior/temper. Greg losing his cell phone is some thing that I can not change, it will continue so I ahve now ordered a watch that can be used to  "track his movements" and he can also call selected phone numbers and it has an emergency SOS button on it. Another baby step.

 

Slowly these baby steps will become bigger steps but that will take time, or manybe the baby steps will become crawling instead.

 

All I know is that I am thankful that God is showing me to take baby steps and that He gives me the strength to fight these battles. And that He will continue to be with me through every step.

 

 

 

³² God gives me strength for the battle.
He keeps my way secure.
³³ He makes my feet like the feet of a deer.
He causes me to stand on the highest places.
³⁴ He trains my hands to fight every battle.
My arms can bend a bow of bronze.
³⁵ Lord, you are like a shield that keeps me safe.
Your strong right hand keeps me going.

                         Psalm 18:32-35 (NIRV)

 



The newest blog

Thankfulness

                                                                                  Thankfulness

I am thankful that I have been chosen to join this journey that Greg is on, that I get to love Greg for who he at the moment that he is in. It is not easy to live with someone who has dementia, but I consider it a blessing from God. I believe God chose me, because it is not a "job" that everyone could handle. 
Can I handle it? Well yes, I believe I can, but only because I have the One who can help me by my side every step of the way. And for that I am thankful. Yes there are days where I want to give up in frustration, where I want to run into the bathroom and cry  and there are days that  I do. Why the bathroom, because that is the only place in the house where I have privacy. 
  
But then I have days like today. Today is one of those days when I am exceptionally thankful. today was a good day, our wonderful daughter in law Bobbi took Greg to the farm., the farm is where Bobbi's dad Wayne lives. About once a week Bobbi goes to the farm to visit her dad, she will usually call and ask if Greg wants to go along with her and Walter. The farm is where Greg can remembers and is happy and at home. Greg remembers the farm, because he spent his summers growing up helping his Uncle Roger at the farm in Rock Rapids. Greg can relate to the farm and loves to go help Wayne with the cows and whatever else needs to be done. It's a place where he and Walter can run, ride the four wheelers, feed the cows and whatever else they find to do, it's a way for Greg and Walter to spend time together and Greg can teach Walter the things that he remembers.  
Today was house cleaning day, with Trevor's help I cleaned, washed clothes and got a lot of things done that needs to get done that I haven't had the time to do. Yes I do occasionally go to the farm with them,  but I think that's it good for Greg to have some freedom and I don't have to worry about him. 

I am also thankful for Mercy Church and the friends that God has placed in my life, friends that are still at Mercy Church and those who have moved on to the things that God has called them to do and my girlfriends, past and present co-workers.  God placed these people in my life. They are people who are always ready with a listening ear, a helping hand, a phone call a bouquet of flowers  and words of wisdom. 

And what would I do without  our five sons, Trevor, Nich, Elliott, Bryce and Kiefer. Always willing to lend a listening ear, give me words of advise, to track Greg via the computer and his telephone as Greg is out bike riding, to go pick their dad up after he's gotten lost or to help find him or to do whatever I need them to do. 
 
No this is not the journey that I would have chosen for us. But God knew what he was doing when He set Greg and I on this journey, before either one of us was even thought of or born.  But I am forever grateful that I get to to go on this journey with Greg and that I have the wonderful support that I do to help us on this journey. 

Jeremiah 29:11   For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.

It Breaks My Heart

                                          It Breaks My Heart

It breaks my heart when we play trivia and Greg can't remember the name of a song or who sings it, when it's a song that he's heard thousands of times.
It breaks my heart to listen to him word search for the most common words, chair, pen, pencil paper, scarf, screwdriver.
It breaks my heart when he can't remember who someone is, myself, Trevor, Elliott, Nich, Bobbi, Bryce, Kiefer or Walter.
It breaks my heart when he can't remember the last time he saw Walter, when he was just here yesterday or he saw him this morning in church.
It breaks my heart that Greg's sisters don't bother to call or keep in touch, or even care to find out how he is doing.
It breaks my heart that he may never get to know any of his future daughter in laws or grand children.
It breaks my heart knowing that these things will get worse.
And these are the things that break my heart.

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