Arise

I've noticed many songs recently with the words "rise from the ashes".  I couldn't find a scripture reference from my brief search, but it is an intriguing notion to me. Ashes make me think of a fire, burning, burnt, death - to arise from that seems pretty remarkable. And yet, that is how I feel lately. Life has been hard and it has promised more of the same. The road I am currently on is very difficult and I often don't want to be here. But I am given these spurts of strength and energy; hope seems to well up inside me and I feel like I am rising from the ashes. Granted, it's not too long before I'm sucked back down into the fire, but there is that "moment"...

Recently, I remembered a poem I had written millions of years ago - ha! Life was hard then too but Jesus promised me He would never leave me to walk it alone. Amazingly, those very words have brought me comfort again. I thought I would share it here, for this is where I'm at in dealing with my mom. She remains a tower of strength in my eyes, although, she is clearly declining in my midst.

ARISE 

"Arise, pick up your pallet and walk”

But with each step I tire and long to lay me down again, near the pool…lying sick, helpless

Waiting for your healing

And you come now saying “Walk”

But life seems to drain from me as I take a few steps; my heart empties onto the street

But still you come, saying “Walk”

Before my knees buckle and I plunge face first into reality,

Stand with me, Lord

Please hold my hand

And when you think I’m able,

Lead me, Lord, down your path

Until someday, one day, when I can walk on my own two feet

Even Though

I have been working my new "job" for just over a month. I have learned a lot...


1. It's exhausting! I wouldn't have thought that a couple hours a day would zap my energy supply so much. There is an emotional toll that is steeper than I thought, a "moving slowly through tasks" toll that is also draining, and an boredom toll - this is not an exciting job. BUT I AM NOT COMPLAINING! No, definitely not complaining. A bit surprised but I am growing in acceptance and i have developed a major appreciation for caretakers. I remind myself that I want to give her what she gave me growing up which is care and grace. It is truly a privilege to walk this path with my mom. I am also grateful that the financial barriers to me helping her have been removed. God is a great provider and I trust that He will also provide me strength! 


2. To keep the big picture in mind. Mom is constantly "organizing" her condo which means I need to go back through and put things back where they make sense. I have gotten over the idea that it is her house and she should be able to do what she wants. I know what she wants and that is to be able to find things! Therefore, they need to be in their correct place. That's the Big Picture. She gets flustered when she can't find what she is looking for. Today, for example, she is looking for her dirty laundry. She is sure she has some, just doesn't know where she might have put it. If I think about it too long, I cry. How hard it is to live in her world. But she pushes on and she is my hero for that. So I will focus on what the big picture is, what I know my mom would have been done in the past, what she is really trying to accomplish.


3. Lucid to irrational moments happen without warning. She recently told me that she wasn't prepared for Alzheimer's. She had considered cancer, heart disease or stroke as as health issues but not this. (Which actually surprised me because her brother had some sort of dementia, I think!) We can have these moments of truth and deep reflection. But then, wasn't it 20 minutes earlier that she was wondering how she would get home? I was confused. It turns out she thought we were in Michigan and, apparently, I wouldn't be driving her all the way back to Illinois. Where did that come from? As I spend time with her, I experience these movements from the rational to irrational with her. I am learning to just go with it, to be patient and kind. Yes, I see patience developing in me. And who says miracles can't happen!


4. Caretakers guilt. This is real and this is huge! I do better than many people I know at setting up boundaries. Certainly, I could improve but it hasn't been an issue until now. I am surprised at the amount of guilt I feel when I leave my mom or worse don't go on a day! I know that my plan is to go M-F, but I feel badly when I don't go on Saturday or Sunday. Not nearly as bad as when I can't seem to get there on a day during the week, but a bit guilty, nonetheless. She is always grateful and somewhat surprised when I show up. This guilt does not stem from her in any way. But the more I go over there, the more I realize she has so little to do on any given day, she is so dependent on others to do anything and sometimes she get confused or forgets her plans and then misses them. I feel guilty because I am able to do whatever I intend to do and she no longer can. It's irrational, I know. So I acknowledge the feelings, pray for God's peace and move on. But the feelings lurk near by and I'm always aware of their presence. I guess it adds to my fatigue!


But still, I am grateful for it all. I think of Habakkuk 3:17-19...


Even though the fig trees have no blossoms,
and there are no grapes on the vines;
even though the olive crop fails,
and the fields lie empty and barren;
even though the flocks die in the fields,
and the cattle barns are empty,
yet I will rejoice in the Lord!
I will be joyful in the God of my salvation!
The Sovereign Lord is my strength!
He makes me as surefooted as a deer,
able to tread upon the heights.


So every now and then I say "Even though" and that is usually all it takes to remind me of all that God has done, is doing and will do in my life. And then, I rejoice in Him!

It's official!

I am working for my mom! We decided as a family that my mom might need a bit more care and since I am currently unemployed, I get the job! I am excited.  My plan it to go over Monday through Friday to manage her household and life. As I organize cabinets, I see plastic milk caps saved and glasses migrating over to the plate shelf. Most of the stuff in the kitchen isn't used anymore, so it's just a odd piece here and there.

But her mail and the papers she saves is a daunting task we will start working on today! I am appalled at the written pleas for money that my mom receives. It make me angry, actually. There is no sentiment untried or scare tactic unused to procure funds for the "never been more important than now" project. After all, they did send a necklace, "took a chance" on sending a prepaid envelope and all the while you may be losing out on money or the government may cut your pension! She must get 5 a day. Just glad we can help filter it all (right into the garbage can!). But she always asks, "Are you sure?" Why is this goofy letter more convincing than me? Guess I need to learn a few scare tactics of my own!

Evaluation results

So I wandered back to meet with Mom and the doctor. Yes, she has declined but how much - there isn't a number to put on it. I understand that there is no need for further "evaluation". What we see her managing day to day will give us more information than a series of tests.  I left with this:

• Mom needs to get out of the apartment every day. Interacting with people helps her significantly.
• Her routine is holding her world together.
• We might want to unplug the stove. Mom doesn't know how to call the police...

I was actually encouraged today. In comparison to leaving that office 2 years ago, I was elated! It sounds like we have managed Mom's life well and we will just continue to watch over her. She may confuse night with day and start calling people! Yikes! But I feel confident that we will catch her before she falls...

Funny thing: The doctor was asking about moving to the apartment and driving etc. I said we moved Mom because she, the doctor, told us to, and we had Mom stop driving because she had told us that too. The doctor put her hand to her chest and said "Someone listened to me!".  It was a very human, kinda sweet, moment!

Truth

I have planted myself at Barnes and Noble, free wifi, expensive chai. I just dropped Mom off at the neuropsychologist for an evaluation. We were here two years ago only to find out she has Alzheimer's. Now, I'm trying to understand where we are at with it all two years later.

I hate these evaluations. I feel so protective of my mom! The doctor asks her simple questions that she can't answer correctly. It's all I can do not to say "Of course she knows her birth date!" Between having memory issues and feeling cornered, my mom doesn't have a chance! But I remain quiet until needed. The last thing I want to do is impede her evaluation - I need to know the truth.

Now truth, that's a funny business. I have always clung to truth, striving to be truthful, authentic, and honest. I love the truth. Until recently, when I found out that I really don't love the truth. The truth is messy. People aren't who you thought they were, situations don't pan out as promised, the future looks a bit more uncertain. Even though I hang out around truth as often as possible, life doesn't cooperate. But in reality, I've gotten just what I asked for! What I REALLY need is a way to handle the truth (flash to Jack Nicholson: "You can't handle the truth!"). Truth be told, I don't want to handle anything. Somewhere along the way, I became so enamored of Jesus, that I wanted to be like Him. "Transform me, Lord!" I thought transformation meant I become like Him, but really it means I become like Him. It's the becoming part that is so challenging, so painful. Mom is part of that transformation process and so is truth. The truth about Mom, the truth about everything.

Well, I better go. The truth awaits...

Autopilot

I spoke with my mom briefly this morning. She called to tell me an old friend had written her a note and promptly read it all to me. At the end, she said ‘It was good to talk with her, she hasn’t changed at all”. Of course, I needed clarification “Did you talk with her or did she just send a letter?” Yea, it was just the letter. Now, my husband, Dan, would have just let it go and agreed with her. Why make her feel bad, he would say. But I can’t disregard her in that way. I want as real a relationship as I can with her, and agreeing with everything would be false. While I accept without comment repeated conversations, I need to understand what she is actually experiencing and what she means when she speaks. Which is why I ask for clarification at times, which is why I appreciate it when my sister calls to tell me about her conversations with Mom. For instance, she called, saying something like: “I told Mom that Jeff (her son) is moving to Oregon.  I thought I should call you right away in case she tells you and you think she’s mixed up”.  Then, we’re on the same page! I guess it’s like a preview to a movie so I know where the plot it supposed to go. I find I can be more helpful to my mom if I know where we are going.

I marveled at two simple things today:

1.  Armed with the information right in front of her (that she probably read a couple times) my mom doesn’t sound like she has dementia at all! Words, names, dates are literally at her fingertips and she pulls it off well.
2.  I am amazed the brain can go on autopilot! After she said she had “talked” with her friend, I realized she didn’t even know what she was saying! It just flowed like water out of the faucet – she has said it so many times before! And I catch myself on autopilot: “Let’s get together for coffee!” I don’t even drink coffee! Do I actually “intend” to get together with that person? The Bible is clear about how difficult it is to tame the tongue and yet how important it is as well. What we say reveals what is in our hearts. Even my thoughtless invitation says something about me: liar, phony, trying to please people…? Ok, maybe that’s a bit harsh but I can’t help but analyze myself through my interactions with my mom! Clearly, I do not expect my mom to have the control over what she says and thinks that she once had. But consider me? I can still reign in my thoughts and words, as long as I stay out of autopilot. But autopilot is so much easier and I default to easy often! God has certainly been teaching me about myself though these hard lessons. And lately the hard lessons have been piling up. So, honestly, sometimes my only solace is that I have, in fact, learned something. I guess that’s why I started writing here…so I would remember all that I learned. While the road before me remains unclear, uncharted, unseen, what lies behind me, is quite clear indeed. 

The Aldi Adventure

Who knew the Aldi store could be such an adventure? The need of a quarter for your cart, your own bags for your groceries (unless you buy bags) and the cash only (I guess you can now use debit cards, which I don't have) all made this shopping excursion a bit much for my mom today. We talked about what to expect a couple times, each time being the first she had heard it, of course. She gathered some items for her cart and continued shopping while I went through the check out line with my groceries. Then I saw her in line with only a box of cereal! She had put everything back because she was worried she didn't have enough money with her and couldn't find her debit card. I convinced her to go through the store again, that I could cover her groceries if need be and she could pay me back. After all, this was why we were out today - to get groceries! She got 3 more items and had the cash to cover it. We won't be going there again! She doesn't need to shop there and it's not worth the angst it brings her.

Corners

I feel like we are turning a bad corner and I am realizing that I know so little about what is ahead. Part of me really doesn't want to know - the anticipation of what is coming may be worse than what actually comes. The other part of me is realizing I need to be more prepared so I can be more helpful to my mom.

Mom called my sister the other day, wondering where she went. "After I stepped out, everyone was gone!", she said. The sad part is, no one had been there in the first place. Upon further talk, my sister decided that my mom had fallen asleep reading, awoken and was a bit dazed, thus confusing the book with real life. When my sister called me to tell me, we were both pretty convinced this was truth. So, of course, I called my mom and she seemed her "new" normal. Whew! But then she called me a hour and a half later wondering where my "boys" were. Are they coming back here to stay? Sometimes they do that, she said. Apparently, she was in the shower and when she got out everyone was gone. Again. I assured her that no one was coming back over, that she could lock her doors and go to sleep because no one was coming to visit her. She was relieved, but I was freaked.

There are plenty of odd conversations we have with my mom, but I'm often surprised at how well she manages. These episodes seem to be her first "hallucinations", which, thankfully, were fairly benign. She was easily calmed and reassured. What happens if she hallucinates something terrifying? Or perceives a danger and lashes out?

This is why my second part is realizing that my first part needs to be prepared, regardless of the dreaded anticipation of it all. I didn't know hallucinations were part of this disease, if that's even what they were. So I'm spending time at the Alzheimer's Association website: http://www.alz.org, in case you are interested and want some information. I'm reevaluating the doctor we see, thinking I need a geriatric specialist - that is such a thing, right?

Obviously, I should have been doing this sooner...

Lessons never spoken

As I mentioned before, I have received numerous phone calls from my mom thanking me for the "poem" I wrote her. I suppose it's a poem, but it's really the song I sang to her at her party. My husband thinks it would be pretty cool to have someone encourage you daily. So, yes, I have my own personal cheerleader. And she is sincerely...sincere each time she calls. And since I know that she naturally is sincere and grateful, I try to fill my tank with it. Here is the song, in case you were interested:

Lessons Never Spoken

Verse 1

If I had to walk a mile in your shoes

I’d look back on life

See the many faces touched by you

Cuz your life seems to

Meet the needs of those around you

Sorrow and the joy surround you

Sacrifice so they would understand

Someone walked a mile in their shoes

Verse 2

If I ran the race that God made, just for you

I know that I would

Serve my family, friends and strangers too

Cuz your life seems to

Share a meal when someone’s hungry

Share your home when someone’s lonely

Share your wealth so they would understand

Jesus ran the race ahead of you

Bridge

Did you know I was even watchin’?

Did you know you were even teachin’?

Lessons caught that were never spoken

Shown in love

They were shown in love

Verse 3

If I had to see the world through your eyes

I know that I would

Look for fun and time would just fly by

Cuz your life seems to

Travel to exotic places

Share some thrills with friendly faces

All the while knowing God is showing you                                                           

How to see the world through His eyes

Jesus is ahead of you

He walked a mile in your shoe

More birthdays

I went to a birthday party for my mom yesterday - different than the one we threw her a couple weeks ago! She called me up to say, "Did you know you were going to my birthday party today at 3?" My mind raced to my Itouch calendar, trying to remember this event, when she went on to explain, "I got this card in the mail that says there's a birthday party for me at the Village Grille downstairs, do you want to go with me? I meant to ask you before." Ok, so I didn't know about it - whew! I have to say, any forgetful moments I have, take my breath away -  just a little too scary! Anyway, I went with Mom to her party. It was an "All April Birthdays" party at her facility, complete with the birthday song, cake, coffee, party placemats and photos wearing a birthday crown. Why anyone over 5 would want to wear a birthday crown, is beyond me, but I do know ladies who turned 50 that did the same thing - ??? We sat with a gentleman my mom did not know from another building and had a pleasant conversation. That it was a man, certainly seemed significant. I know she misses my dad immensely and I think she rather enjoyed talking to A MAN! I was glad I was there to help her with the conversation and I'm beginning to think startup conversations are easiest. I get very protective of my mother, hoping people will understand and be gracious, and somehow know she wasn't always like this! (I guess I'm still grieving some things!)  Most people are, I am finding, especially her contemporaries. But what I like about startup conversations is she doesn't have to have remembered anything and she can ask the same questions over again. She can pull off a "where did you live before?" again without drawing much attention. It was kinda cute watching my mom yesterday. Don't we all crave to be connected to someone? To know and be known? It reminds me of the inadequacies of human relationships. Even the best of them, end at some point. I'm grateful for a better option. I know that there are people who doubt that God, if He even exists at all, really connects with people. But I'm not one who doubts God connects because He has connected with me, He connects with me - ongoing. It is evident to me that I am different because of the time I have spent in the His presence. Truly different. Ask those around me. That I would go to a party and talk with strangers - old people, no less - is further evidence that God is transforming me. That would not be my natural bent, sad to say. But connecting with God helps me lay aside myself to connect with my mom, meet her needs and even relate to her friends. No one is more surprised than me!

In the end, it's about gratitude

Ok, not so diligent as I thought!
Much has changed since I last wrote - in my life, not my mom's! She has declined in her memory, but she is still plugging away at life. She gets so frustrated she can't remember anything! And it's not the forgetting where you know you can't remember something, as in you know you know, but it's gone. It's disbelief that what she's been told has actually happened. I am waiting for the day when she stops trusting me, thinking I'm making up all sorts of stories! Yikes - hopefully that never happens. I imagine it's lonely being forgetful. Does it feel like prison? She can barely remember earlier today - does she think she does nothing all the time? I realize she enjoys the moment, but don't the memories make the days sweet as well?
For example...
We had a big party for her last Saturday to celebrate her birthday. She loved all of it! You could see it in her whole being! She smiled all day and enjoyed her family and friends who all gathered around her. We ate, laughed, sang and just loved being together. And she has remembered "the party" over these last couple days, but the details have disappeared somewhat.
"What was Ron talking about when he was speaking?"
"Did you sing, Leslie? Oh, I wish I could have heard it!"
"I didn't know Dan brought his girlfriend!" She told me 3 times when looking at photo's of the event! Then she called me when she found "a poem" tacked on her board. In actuality, it was the song I had written and sang to her on Saturday, but it's new. It can't be remembered. It can't be remembered. Can't. The mind is incredible even in it's failings.
But ya know, she sent out thank you's the very next day. She knew that had to be done. And if I don't go take the guest list from her, she may sent them out again! As my husband reminds me, there are elements of my mom that are lasting: she wants to participate, to help and to thank. She is very grateful. She could be crabby, but she's not. She is very grateful for pretty much everything you do. She knows she is so very dependent in spite of living independently. And I'm beginning to think I need some of that gratitude to rub off on me. I live independently, but honestly, I am so very dependent on God. I just don't always realize it. I have these moments like today when I just want my mom back. I'm tired of the same conversations over and over, I'm tired of explaining things, tired of trying to manage someone else's life and all I want to do is call someone and cry and tell them of the ridiculous things she said...but who would want a phone call like that? And that's when I remember that I am called to run with endurance this race that God has set before me. That to do that, I need to keep my eyes on Jesus who, because of the joy awaiting him, endured the cross disregarding it's shame. That I need to look straight ahead and keep moving forward. That I need to be grateful that my dependence is on the only one who can actually help me. And I know that I need to live life with others, which is why I'll probably have to have lunch with a friend very soon.
Dependent gratitude? Grateful dependence? Something like that...