Wednesday, July 16, 2014

Seven Answers After Five Years



Five years ago we got the daunting news: Popsicle has early onset Alzheimer's.

The news was devastating. Not entirely unexpected, but devastating nonetheless. The road's been long and difficult to navigate. At times narrow and daunting, other times wide and open to all threats. It's been times of fighting the tide, pretending it's all good in the hood, despairing over the ugliness of this process.

We tried treatments. All kinds of them. Experimental, holistic, commonplace. Oh how we tried. But the brain is a mystery, his disease more so, and us, helpless.

People don't know much about memory disease -Alzheimer's, dementia, and all the other names it goes by. They think it only happens to old people, that it means forgetting names or phone numbers, that it isn't terminal. So today is a day of education for ya'll, a day that'll keep you in the know and save you face one day when someone you know is diagnosed.

1. HOW LONG WILL THIS TAKE?
The answer always is: we don't know. Always. Some doctors try and give timelines, some professionals say there's a specific pattern the disease follows, some people want to say it'll be forever. None of this matters. The disease happens by it's own volition every. single. time.

Usually it's 5-10 (possibly even 15) years from the date of diagnosis. Factors like age, health (aside from the brain), level of activity also come into play. So far, we've been at this for five years. That five years has looked like early signs of confused memories that, after a few years, turned into rapid decline then plateau, rapid decline then plateau (sort of like what happens during weight loss).

Right now we are in the later stages of the disease so changes aren't as obvious or marked to us, though there are moments of identifiable decline. Maybe this is because his language is so muddled and his personality so absent that loss feels and looks altogether different.

2. IS IT CURABLE? 
Modern medicine knows a lot. One thing it knows very little about is the way the brain works, heals, degenerates. That said, there are medications to attempt at slowing the process, brain games that keep connections between neurons strong, diets that supposedly assist in brain health, but there's so much conflicting research and opinion. It boils down to the fact that once brain matter degenerates, recreating it is a million shades of challenging.

No, at this time there is no cure.

3. DEMENTIA ISN'T FATAL, IS IT?
No. And yes.

No, dementia itself isn't fatal or listed as a cause of death. Yes, the brain forgets life sustaining functions that lead to heath crises that are fatal. Sometimes that's swallowing, other times it's coughing or breathing or eating or maintaining body weight.

No, dementia won't kill you directly, but it'll open the door BIG AND WIDE for another issue that will.

4. WHY A MEMORY CARE UNIT?
The hardest part of this journey for our family was the decision and process of moving my dad out of the home. However, safety for all involved is key. Dementia steals the sound mind taking with it reasoning, understanding, critical thinking. Trying to explain to a dementia patient that they need to stay inside because it's cold, or eat to sustain themselves, or go to the soccer game because we all are is hard, tedious, and frustrating for everyone.

From personal experience, Popsicle would grow anxious and relieve his fears by walking, walking, walking, walking. Sometimes for hours on end, sometimes in the dark of night, sometimes in the pouring rain. He wouldn't know to tell us he was leaving, or that he'd come home. We knew he couldn't continue to walk in our neighborhood with no streetlights or sidewalks. We feared he wouldn't be able to find home again, to communicate who he was to a stranger if lost, or remember who is safe to follow.

5. DOES HE REMEMBER YOU?
No. Yes. But mostly no.

No he doesn't remember our names. (He hardly remembers his own anymore.) Sometimes I don't think he remembers our faces. But I do believe that deep inside of him there's a piece of remembering there. Like his spirit that lies deep under the foggy blanket of dementia can sense us, but naming us, placing us, acknowledging us doesn't happen anymore.

This is a part of the memory loss process -forgetting those who are dearest to you. There are stages to this loss (well, to all of it really) that start with confusing identities (like my mom and I), then forgetting names, then associations (like that I'm his daughter), then it's simply just the process of recognizing someone whose face is familiar.

6. DOES HE KNOW WHAT'S HAPPENING?
He did for the first while. He'd become frustrated when words just weren't there anymore. He'd lose track of what he was doing and you could see the pain that caused. He would put the wrong fuel in his truck or get lost in familiar places and have to call for directions. I can't imagine the terror that would cause in his heart and mind.

Then he didn't. After he surrendered his license he forgot about the truck and motorcycles he used to drive. Then he didn't remember that my mom and I were two different people and he'd get uncomfortable with the two of us in the same room. We moved him and he didn't ask to come home or say that he missed us, because he didn't remember before. He didn't know what he'd lost or understand the loss to come.

7. IS HE SUFFERING?
He isn't. At least not in a painful or emotional way. Mostly because he's unaware.

Are we his family? Yes. Not because we're losing our memories and minds, but because it's so damn hard to watch him be stripped of every last bit of Popsicle-ness. His dry wit, love for life, and strength were all what made him so lovable, now he has none of it and we grieve the way he disappears a little bit more each time we visit.

Dementia is ugly. There's nothing beautiful or wonderful about it. The redemption in all the mess is the community that's gathered around to love on our family.

So, love on yours please. 

And, when someone you know is diagnosed, remember that there is beauty in all the tangled ugh of it all; you simply need to look up and around and away from the disease.

48 comments:

  1. Katie @ A Beautiful Little AdvJuly 16, 2014 at 6:19 AM

    I admire your strength.

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  2. Thanks so much for sharing this. I've been following your story for some time now, and I truly admire your strength in dealing with your dad's disease. My granddad is in the early stages of dementia, so I can't begin to tell you how helpful this post is for me! Thanks again....thinking of your family!

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  3. Gosh, your last line. My grandfather suffered from Parkinson's and the hardest part was the not knowing. Not knowing if he would remember us that day, or not knowing if he would be able to find his way home from his walk that day. Seeing your strength in a scary situation is encouraging.

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  4. The year after my great grandmothers Alzheimer had reached the association phase (she knew we were related but thought I was my mom and my mom was her daughter) my great grandfather died. No one even saw it coming. He was in perfect health and then gone. My mom says that God doesn't do anything without reason, I know without a shadow of a doubt that he took Papa first because he knew that Nana was in good hands, that she could go on living her routine because she couldn't remember being married.. Every once in a while she still asks for Johnny (my great grandfather), and it's sad when my grandmother has to explain that he's not here, sad for us, because Nana has already moved on to the next thing. It's hard, even for people that deal with dementia, to grasp it fully, but you've done a beautiful job at explaining it.

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  5. Such a terrible disease. I can't even imagine, but I so admire your strength and the grace you display in the midst of an awful situation.

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  6. This makes me cry. I can't imagine being in that position...such a vulnerable place. I am incredibly inspired by your strength in this. I'm sure it comes and goes, but you're an amazing person. There IS beauty tangled in this...as hard as it is to remember. I hope that God shows His plan, even in the middle of the hurt.

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  7. Thank you for sharing these questions and answers. I don't think people realize the severity of it, and tend to think it's just an "old folks disease" (like you said). Lots and lots of prayers for you and your family during these trying times!

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  8. you explain it so well, and with such grace. you are all amazing, but especially you. lots of love and hugs to you.

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  9. Amber, this is the most beautifully put q&a I've ever read. Your strength is an inspiration to us and I'm sure to everyone who knows you. This post has helped me better understand the people I've met and I know it's knowledge that will be used in the future. Thanks for continuing to share with us.

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  10. I know I've told you before that I've dealt with this personally in my family, and of course as a nurse. To me it is one of the cruelest diseases you can imagine. It is so hard to watch a family member go through this, it is so hard to be helpless and powerless, no matter how hard you try, you cry, you pray, there is nothing you can do to change the diagnosis, only your perspective. No one is perfect, and no one can have their shit together all the time, but you my friend, have a gift with sharing and a gift with words that can make something like dementia, even for a brief moment, seem a little less shitty and a little less ugly.

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  11. I love you sweet friend x

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  12. This is an amazing post! I want to say more but I truly don't know what to say or how to express it. I'm shocked at how eloquently you described something that is so hard (and terrible). Alzheimer's runs in my husband's family and it scares me. Thinking of you and your family.

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  13. such a wonderful and sweet post, thank you for sharing!! I've always wondered what it might be like to deal with this terrible disease and this has given me an insight to those challenges. You are so strong and I know your family is so proud of you. Praying for you all!

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  14. stop making me cry at work...
    This was beautiful and every time you write about your dad I want to fly to CA and give you a giant hug. This sounds so hard and I admire you and your family for the strength you have!!
    xo

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  15. I honestly cannot imagine. You are SO strong my friend. So strong.

    -Kate
    www.theflorkens.com

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  16. My aunt had dementia and it was sad but we were there and made memories.

    http://nightowlventing02.blogspot.com/2014/07/the-hump-day-blog-hop.html

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  17. Oh Amber, thank you for sharing these questions and answers. Sending so much love (as always)

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  18. I can't imagine going through this with a parent--my great-grandma had dementia, but she was in her 90s when it started. You guys are tough, and the love that your whole family shows is palpable.

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  19. Your words and honesty are so beautiful.
    Thank you for sharing with us, and for inspiring me to appreciate my family - problems and all.
    Love that you've taken such a awful disease, and made yours (and others' lives) more beautiful despite it. You are pure joy.

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  20. Thank you so much for sharing.

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  21. Thank you for sharing this. My grandmother, who I never really knew too well, has dementia now and doesn't even know who I am. I can't begin to think about what would have happened if it had come on earlier. I am sad for pain in this fallen world, but God's glory in the community of your family is just a foretaste of what it is to come! I know that is much easier to type/say than live through.

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  22. Such an ugly disease. I'm so sorry it's touched your family.

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  23. I can't imagine this was easy to write, but it's beautiful and haunting and doing something important for others in similar situations. I admire the way you're seeking the positive, always, even when it's the hardest. Sending love your way.

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  24. That means millions of things coming from a woman as strong and beautiful as yourself.

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  25. Oh Leslie, thank you. It's such a scary, ugly disease BUT there is beauty there. I promise. :) Thinking of you and your grandpa, so sorry for the diagnosis and the journey to follow.

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  26. The not knowing is so challenging. SO CHALLENGING. It's scary to realize that no one knows, no doctor, no specialist, no one because there's a comfort in the facts, evidence, and process...

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  27. Thank you for sharing this, Amber. You all have been in my prayers and will continue to be.

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  28. Natalie ZambreskiJuly 23, 2014 at 10:18 AM

    This brought tears to my eyes! I'm a new follower and was just perusing your recent posts, and this hit me hard. I've had close loved ones deal with Alzheimer's and it's so painful to watch. My heart just breaks for you and your family, but your out look because of the situation is SO beautiful.

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  29. Oh Natalie. Thank you. Realizing that other women who've lost loved ones in such a sad, hard way understand makes my heart smile. :)

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  30. Oh Emily. You make my day so many days in a row.

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  31. It's not easy, but it's cathartic nonetheless. Good for my heart and my soul and hopefully speaking a little glimmer of hope into the darkness that is tough parts of life.

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  32. "I am sad for pain in this fallen world, but God's glory in the community of your family is just a foretaste of what it is to come!" -That is PERFECTION. Literally, my heart said SO PERFECTLY by you! :)

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  33. Oh, you flatter me in the best possible way. It leaves me speechless and thankful. So thankful for you and your life and the openness of your beautiful heart.

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  34. It's something I never thought in a million years would happen to us. But I also, never in a million years, thought that we'd handle it in such a sticking together and clinging to God sort of way. I guess that makes it even. :)

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  35. Your love is not only appreciated but felt and loved right back. :)

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  36. It's so challenging because it's so mysterious and, well, answers help ALL THE THINGS in life. :) Hopefully I answered most of your questions (even the ones you didn't know you had!)

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  37. Stop crying at work you beautiful thing!


    But really, when you're coming home from Norway can you just fly your way right over to CA and be mine for a week!?!

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  38. Oh girl you're speaking to my heart. Jason's family has a history of it too and, well, when I look at my dad and imagine Jason in his place I just want to cry and die and all the sad emotions.

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  39. There is SUCH beauty in hearing from the nurses' who deal with this professionally. SUCH. BEAUTY. The hearts and loves of your sweet selves is mirrored in the lives of some of my Dad's nurses and it's just beautiful to know love lives so fervently in the ugliness of the disease.

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  40. Oh Monica, thank you. THANK YOU. I guess if I've got to go through it I might as well share it to help others know that it's normal, sad, terrible, and ugly but so normal to feel all the feels.

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  41. Isn't it so hard because you want to ask them what would make them feel better but know that it's not going to be a question they can answer? Oh, goodness. The hardest part for me is being around him and seeing him struggling with basic things and knowing the genius he used to be...

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  42. can we just make these love and hugs real life things? PUH-LEASE.

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  43. Oh girl I had no CLUE that it was something that happened to people in their younger years of life or that it could be such a thief of ALL THE THINGS or that it happens in SO many different ways. Oh how I hadn't even a sort of idea!


    And thank you for the prayers. I can feel them some days, especially the days that feel especially ugly and long.

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  44. Oh how I care for your beautiful soul.

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  45. So vulnerable, right? And I can't help but wonder how fear-filled it must have been for him because when I even feel an inkling of being lost I get all panic-stricken. But, he's safe and that's wonderful and provides some peace despite the turbulent waters. :)

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  46. Oh girl that's terribly sad and yet glorious too. There's a couple at my dad's facility where the woman is a patient and not doing well, while her husband is healthy and devastated at the loss. He dotes on her with endless abandon and whenever I see them I burst into tears over the sadness you can see just seeping out of his soul. I can't imagine being married that long and then walking through such loss with no clue what he'll do without her.

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