You are currently browsing the category archive for the ‘Alzheimer’s World’ category.

“Yet this I call to mind and therefore I have hope: Because of the LORD’s great love we are not consumed, for his compassions never fail. They are new every morning; great is your faithfulness.”
-Lamentations 3:21-23

A few weeks ago I had a midterm for my online class that required me to head home for the proctored midterm exam. It wasn’t really that big of a deal, yet at the same time it was because it felt like I hadn’t been home since mid-June. So, just like that I rolled into town Friday night, ate just about everything in sight, helped my aunt pack for her mission trip, and watched some TV with my grandmother. Sorry AFC (Ambassadors for Christ), I ditched you guys for C.S.I. and cutting pool noodles in half with a boxcutter. And eating oxtail stew. Mmmmm… oxtail stew~~~

Anyhow, one of my main “to-do” items while back home was to visit my grandfather who is currently residing at an extended care home designed specifically for individuals with Alzheimer’s disease. It’s a pretty nice place – comfortable, relaxing, plenty of activities – but still, obviously it’s not home. So on Saturday after my midterm I went with my grandmother to visit Gung-gung. She brought along a persimmon from her tree (the tree had a pretty good harvest this year). Apparently she always tries to bring him one little snack from home when she visits. She signed us in, said hello to the head “Murse” of the facility (my general impression of that exchange was borderline flirting, but what do I know), and we headed off to find Gung-gung.

He wasn’t too difficult to find: lounging in a chair in front of the television like he would be if he were still living at home. When he saw us he got up (with some difficulty) and greeted us with hugs, hellos, and kisses for his wife. One of the nurses was nearby and he introduced us to the nurse (she’s met us several times now I’m sure). He remembered to introduce my grandmother as his wife, and I actually don’t remember if he remembered my name.

Ironic.

One of the things all of us in my family do when we visit Gung-gung is walk with him around the facility at least once. Half of us are currently working in, formerly worked in, or are aspiring to work in the medical field and so the signs of muscular atrophy are pretty evident. He is still well rounded in the stomach, so he’s not losing weight from inadequate calories, he’s losing muscle – leg muscle – and that’s kind of scary. So we go for walks, short walks, hoping that it’s hopefully enough and that the next time we visit he’ll still be able to get out of his chair on his own.

Grammy gave him the persimmon, which he promptly shined and began to much on, and we headed outside to enjoy the nice weather, the lovely fall decorations, and each other’s company. Conversation is tricky when dealing with both my grandparents at the same time. I can’t ask too much about what Gung-gung has been doing because once he talks about what he thinks he’s done, Grammy will cut in and correct him. Once and a while isn’t too bad, but he gets agitated if she does it too much. So most of our conversation focuses on the present: the weather, the decorations, what do you think of this and that; and my life: school, work, social life.

The Murse stops us for Gung-gung’s insulin shot. We probably shouldn’t have given him the persimmon to eat so close to taking his insulin, but he assures us that it’s fine. For Gung-gung, it’s better if his blood sugar is a little high, rather than too low. Fair enough, I suppose.

We take another short lap around the courtyard and head back to Gung-gung’s cottage. It’s almost time for dinner. There’s another lady who follows us back. A more “stereotypical” individual with Alzheimer’s, she always makes me a little sad when I see her. I kind of want to talk about her more, but I feel like if I do I’ll be breaking some kind of HIPPA law. In the end, a nurse helps her over to dinner. I ask Gung-gung to see his room before we leave. I don’t know why. Just cause. He gets a nurse to open his door and I basically look for anything that is different from the last times I visited, which are usually pictures. I fix the calendar date while Grammy reorganizes and replaces things and mutters about what is missing.

Hard fact of life: if someone you know is in an Alzheimer’s care facility, don’t send him or her things that you aren’t willing to lose. When your memory is going out the window, ownership is ruled by who currently has possession of said object.

I upgraded to a smartphone within the last year or so. Thus far, that tiny object has both revolutionized and undermined my entire life. I’m definitely a lot more narcissistic than I think I am. BUT, the phone has a camera. Redeeming feature. It’s great. I can take pictures of what I’ve been doing and show them to my grandparents (and the rest of the world). I can also take a picture with my grandparents – you know, for memory’s sake.

Goodbyes are always hit or miss. Some days are an agitated parting, while other days are clearer. This past goodbye was a clear day.

“How much does it cost for me to stay here?”

“Our long-term insurance covers it.”

“If it’s getting too expensive I can always come home. All I do here is eat and sleep.”

“Medicare takes care of the rest. Besides, that’s all you do at home anyway.”

“Okay then. But if the rent goes up I can always come home. All I do here is eat and sleep.”

“Okay- Goodbye!”

So I say, ‘My splendor is gone and all that I had hoped from the LORD.’ I remember my affliction and my wandering, the bitterness and the gall. I well remember them, and my soul is downcast within me.
-Lamentations 3:18-20

It’s just a sad existence. You can butter it up all you want, but life with Alzheimer’s at a facility is lonely, it’s boring, and it reinforces that you’re losing your mind.

One of the things I’ve been thinking about since this last visit is Salvation and mental degeneration. Is it possible to forget God? Or does “preaching the Gospel to yourself daily” take on a whole new meaning? I do count it quite a blessing that my grandparents both accepted Christ shortly before dementia and Alzheimer’s started to take their toll. But how do you navigate the Christian faith when you barely remember the names of your children, let alone this God you recently put your faith in?

What is faith when your mind is failing?

Here is a trustworthy saying: If we died with him, we will also live with him; if we endure, we will also reign with him. If we disown him, he will also disown us; if we are faithless, he remains faithful, for he cannot disown himself.
-2 Tim. 2:1-13 (emphasis added)

Sometimes I wonder if I am just inanely foolish. I can struggle with an issue for years, even when scripture reveals the truth so clearly. Or maybe I’m simply fearful, fearful that the truth will suddenly change and I’ll be left with the short stick.

Man is like grass. Our glory is like the flowers of the field. When the summer winds blow hot, the grass withers and the flowers fall. When I was younger I thought I’d always have my grandparents, and life was only taken when you reached a ripe old age and had accomplished everything you needed to do in life. Unfortunately, I now know this to be false. I am grass: here today, gone in an instant.

But the Word of the Lord stands forever.

The body may fail, the mind may fail, but God does not. Even if I forget yesterday, or even today, of tomorrow there is one thing that I can be sure:

“Yet this I call to mind and therefore I have hope: Because of the LORD’s great love we are not consumed, for his compassions never fail. They are new every morning; great is your faithfulness.”

If little Annie can sing and smile saying, “the sun will come out tomorrow,” should we, Christians, not have more to sing and smile about? For our God is more faithful than the sun.

Advertisements

I’m refusing my body sleep for some dumb reason or another, and since Yahoo! news pops up all these interesting articles, here’s a paragraph I kinda got hung up on:

2) You’re grappling with your own mortality.
Taking care of someone who’s sick inevitably brings up questions like What happens if my mother/father/sister/ aunt doesn’t get better? Will the same thing happen to me one day, and who will take care of me? As normal as these thoughts are, they’re upsetting. To help you work through them, keep a journal/ notebook to write down your thoughts and fears daily or every few days. This can help you realize that you’re nowhere near being in your loved one’s shoes. Doing things you’re enthusiastic and passionate about and being present in the moment, such as taking extra time to enjoy your morning coffee-how it smells and tastes-also helps draw a contrast between the two situations and reinforces the fact that you’re in a very different stage of life.

I don’t know any girl that hasn’t at some point in their life dreamed of having a Prince Charming come save them from their tower, guarded by a fierce dragon. If anything, Disney did a pretty good job of perpetuating this fantasy (at least for myself). And then one day life kicks in and you find yourself a little older with Disney announcing the end of their Princess franchise because it’s unprofitable. Because no one believes in that “true love” junk anymore.  On top of that, during this period of life as a Christian female, every other sermon and devotional is aimed at either waiting on God to jump start my romantic endeavors or coming to peace with the fact that you are single and may or may not stay that way. And as fed up with those devotionals as I am (I swear, why is there such a fixation on dating and marriage right now?), here I am, writing another one – kinda. I wouldn’t really categorize this as a devo though.

Alzheimer’s is a degenerative neurological disease. As the myelin sheath is stripped off of nerves in the brain, nerve impulses slow, plaque builds up, and the brain just doesn’t function like it used to, causing the rift between what shall be known as the “real world” and the “Alzheimer’s world.” As with most brain injury/impaired function patients, most of the care and support for Alzheimer’s patients is centered around the caregiver. Why? Because the stress, the responsibility, everything ends up on the caregiver. And while the dependent spouse is happily off in Alzheimer’s world, the caregiver is stuck in the real world trying to survive in the ever growing rift between the two worlds. Did you know that these caregivers can end up with post traumatic stress disorder? I can kind of imagine why. The person the caregiver married is no longer the same and they may find it difficult to deal with the “new” spouse.

Watching my grandparents, it’s kind of a bipolar thing. Some days my grandmother will recognize that my grandfather just can’t do things anymore. Other days (especially in the beginning) it was, “He’s doing this on purpose! What is he doing now? Oooh, he makes me so frustrated!” And me, the unfeeling sympathizer that I am, just kept repeating, “Well, that’s how he is now.”

But it’s not how he used to be.

You see, at first it wasn’t too bad. My grandfather would have his good days and his bad days. On the bad days, they would argue, get frustrated with each other and it’d be all bad. But on the good days it would be, “Oh, he’s normal today!” And life would be good. He’d be happy, she’d be happy, and I could not have to play referee. But as the dementia progressed to Alzheimer’s, it really took my grandmother a while to finally realize that – even though he’s taking medication – he’s not going to go back to being the man she married. Occasionally she treats him as such – the man of the house, asking him for his opinion – and then she gets frustrated and wonders why his answers don’t make sense. But, she’s adjusting – albeit slowly – to the new way of life with the man she married over 50 years ago. Adjusting to the life of constant reminders, checklists, and “A-1 tests.”

I’ve joked around with my dad a lot about this.

“You just wait 20 more years!”

“Ah ha ha – SEE ya!”

But at the same time, it is reality. Currently one of the number one determiners of whether or not a person will end up with Alzheimer’s is genetics. So the likelyhood of me having to go through this “forming, storming, norming, performing” process with my parents in the future is relatively high. And with Alzheimer’s on  both sides of my genesthat really kind of made me think:

Would I really want to put a spouse through this mess?

Let’s get something straight here. Dealing with Alzheimer’s is not fun. And though it is a hop skip and a jump and a stones throw away for me before I even get close to the mentally deteriorating age, the questions of “who will take care of me?” and on top of that, “do I really want them to?” still gnaw at me. There is, then, also the thought that in the end, if it’s not a spouse, it’s my siblings (ha-ha). As I watch the gap between the real world and the Alzheimer’s world grow between my grandmother and grandfather, I have to wonder: is there hope for a romance when their worlds are so far apart?

I wanted to use a chick flick analogy like “The Vow” or something, but it’s just not working right now, so I’ll skip to the point.

It’s almost impossible to bridge the gap between the real world and the Alzheimer’s world. I can try to fill the gap, jump the gap, stand in the gap, do whatever in my own power in the gap, and all I’ll do is end up becoming burnt out and fed up. Our worlds are too different. Interestingly, enough, God provided me with a really good example of bridging the gap between two worlds:

But God demonstrates His own love toward us, in that while we were yet sinners, Christ died for us.
-Romans 5:8

Perfect and holy God – sinful man. Two worlds that were so completely different that they could never mix, divided by a chasm of perfection so wide that there was no way man would ever be able to fill that gap. So God built a bridge. Joining us in our crooked world, perfect God took a hammer and nails and with His own hands He bore the weight of our sin. He stretched out his arms over that wide chasm and poured His love upon us and said “”Come to Me, all who are weary and heavy-laden, and I will give you rest.” (Matt 11:28) Stop trying to cross this gap in your own power.

He bore our stubbornness with patience, our rebellion with kindness, our ill-intentions with mercy, and our inadequacies with grace.

And if that’s not a beautiful picture of loving across worlds, I don’t know what is.

Applying that to my relationship with my grandfather, or even teaching that to my grandmother isn’t going to make the Alzheimer’s go away. But it can make this process a whole lot less frustrating. Huh. It’s funny. Even this small of a chasm I couldn’t bridge on my own. Whatever made me think I could make it across the divide that separated me from God?

The article suggests living in the moment and cherishing the little things in life as a way to get out of this morbid rut of mortality. However, for me I think it’s more the though of being dead long before my body gives out that scares me.

So I’ll just hum this little ditty, and let the world turn ’round…

But the fruit of the Spirit is love, joy, peace, patience, kindness, goodness, faithfulness, gentleness, self-control; against such things there is no law.
-Galatians 5:22-23

I still have one more conclusive post to, well, post for the Boundless thing. Life fail, but no more so than usual. Anyways, I’ve been prodded to post and to post something that interests me at the moment since my other post is giving me writers block, so I’ll address the one statement that’s been driving me nuts lately:

“How are you?”

Oh just dandy! Made some scones, drank some tea, wrote a few emails – pip pip, wot wot and all that jazz. How are you? You’re fine as well? Splendid! Let us go off dancing into the sunset together! Jolly good! Say, while we’re here, you know those Angry Little Girls comics? Where they’re always angry even when they’re smiling? You know, even though I’m smiling, all I want to do is punch your face in.

Ok, maybe not punch your face in, but you get my general mood. Truthfully? I’m not good. But if I told you would you really care? Would you understand? I feel like Alice did after falling down the Rabbit Hole. Why on earth would you want to tell anyone about the world you discovered down there? “You’re mad!” they’d say. And they’d be half right. I’m beyond mad, now. I’m just straight up angry.

Don’t forget to take a shower, Gung-gung!

“I will! Gee-Whiz! I take one every night, after I run my A-1 test!”

Wow, that’s a lot of food. Save some for me, Gung-gung!

“Here, you eat it. I’ll fast. Starve myself. Lose some weight.”

“There he goes again, acting like a big baby.”

That’s not very nice, Grammy.

“So? He’s acting like a baby.”

I guess at first, falling into Dementia/Alzheimer’s World wasn’t too bad. Two years ago it was mostly clear days, occasional off days, and very few reminders to run my “A-1 test.” Now it’s a world of lines and circles, confused memories, and constant reminders to run my “A-1 test” with half eaten food, garbage, and every other object in the house. I learned in Nutrition that there is actually an A1C blood sugar test. It’s used to measure just how crystallized you are on the inside. For the record, diabetes isn’t just a “problem” it’s a disease that kills you from the inside out. Final stages? Dementia is one of them.

I hate repeating myself (even if it’s not because they didn’t hear me the first time). I hate cleaning up after other people (even if it’s not necessarily their fault). I especially hate having to pretend all the time just so someone doesn’t go off the deep end (even if it’s the “correct” thing to do). Take a step to the left? Really, Alzheimer’s support blog? Really?

Ninety percent of the time I just want to take all the stupid junk food, chuck it in the trash, lock up both refrigerators and just let everyone starve. It’s diabetes induced dementia. What do you not understand about that?! Fine! Don’t listen to me! Do whatever you want! See if I care! Why am I stressing out about your choices? I need to study. I want to transfer and get out of here! Ha! And you’re going to give her a car? Pfft… someone’s going to be dead by next year. Man. If this is what I have to look forward to when I get older, please kill me before I turn 30. Thank you.

And yet in all my (almost sorta kinda not quite really justified) rage, God still managed to tap me on my shoulder.

Why are you angry?

Because my stupid grandparents make stupid choices!

Why are you angry?

Because Alzheimer’s is a stupid disease and it sucks!

Why are you angry?

Because it’s in my genes too and I don’t want to end up like that! I just want to die!

Why are you angry?

Because You promised to be a God of comfort and peace. Where is that for me?

“If you love those who love you, what credit is that to you? Even ‘sinners’ love those who love them. And if you do good to those who are good to you, what credit is that to you? Even ‘sinners’ do that. And if you end to those from whom you expect repayment, what credit is that to you? Even ‘sinners’ lend to ‘sinners,’ expecting to be repaid in full. But love your enemies, do good to them, and lend to them without expecting to get anything back. Then your reward will be great, and you will be sons of the Most High, because he is kind to the ungrateful and wicked. Be merciful, just as your Father is merciful.”
Luke 6:32-26

Rebellious, stubborn, deaf, blind and difficult to love.

Gee, who does that sound like?

Me.

And every other person Christ died for on that cross. The entire Old Testament is practically about God loving a rebellious, stubborn, deaf, blind and difficult to love nation. Granted, His wrath was always justified. Every time I want to be angry, He brings me back to the cross and says, “Look.” He reminds me of Israel. He reminds me that though all of mankind as a whole does not listen to Him and chooses to do their own thing, He still loves us and He sent His Son to die for us. No matter how stubborn or frustrating we got, God never gave up on loving us with patience and gentleness.

It’s not like my family is oblivious to the fact that my Grandparent’s have Alzheimer’s, so in that sense I’m not alone in my suffering. But it’s still not easy. It’s still frustrating. But as I walk with God, I see more and more a reflection of the grace of God in my situation. I don’t want this to be my life, yet it is my life, and He has put me here for a reason. Give me, then, what I need to endure with love, joy, peace, patience, kindness, goodness, faithfulness, and self-control. Give me something, because I can’t deal with this on my own.

Advertisements