Alzheimer’s

A New Chapter

Secret Places of the Heart

The moon was bright this morning and the desert air had a snap to it and my nose stung breathing it in, but it is marvelous. Forty degrees is a wonder when you think that four months from now it will be creeping into the hundreds already. My mind was already mentally ticking off tasks today as I settled down to pray, but I put all those thoughts to rest temporarily as I focused on what really matters.

Just being with God and resting in His presence before I start the day seems to make everything go smoother.

Today, I will make some edible Valentines to send off to my girls, and Wal-Mart is on the list. Later this morning Elaine and I will visit the carehome director to see just what kind of room her Mom will have, shared or single. We are praying for single. She doesn’t co-habitate well with strangers, but if a double is available we will have to make it work. She just may surprise us all.

Saturday is moving day for her Mom, and Elaine is having a hard time this week. Sending her away in the state she is now feels much like putting a special needs child on a bus to boarding school, and though her Mom is demanding and not nice, Elaine still wants her to have what she likes and what she needs. It’s not easy to cast aside what has enveloped and consumed your whole life for the past 5 years. She worries like the parent now. But it is time.

Yesterday her Mom got in the cabinet and took Elaine’s pills in addition to her own. That was a first.

And a few days ago she came in to find the glass carafe sitting on the stove, which was still warm. She also didn’t seem to know her own husband when she went to see him just the other day, that was another first. It has been a week of “first’s” I guess. But it is all working out, and I think at just the right time.

Freedom looms on the horizon and although she is too scared to believe it she made plane reservations for the first vacation she has had in a very long time. She told me she feels much like a prisoner walking out of prison, afraid the gate will be slammed in her face before she gets to the other side.

Just yesterday she said, “I won’t take a deep breath until we drive away from the carehome.”

I took Saturday off to help out, and a very nice co-worker of Elaine’s has offered a dresser and help with delivery. Day by day things are falling into place. We are shoring up for a battle.

She will not want to stay. She will want to come home. She will probably be very angry.

And prayers are always appreciated, of course.

Miracle in the parking lot

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“Peace I leave with you; my peace I give you. I do not give to you as the world gives. Do not let your hearts be troubled and do not be afraid.” John 14:27

Lately, it has been hard to keep emotion under control. Always, it threatens to break like a breach in a dam when it finally gives way. She is in the last stages, (she sincerely hopes) of placing her Mom in a care facility. In between her bus route this morning she was doing her other job, collecting paperwork for the placement process. If you are a private pay patient it’s a whole different scenario; they wave you in like royalty, roll out the red carpet, fresh flowers in the room and all that, but her Mom is not. When you are dependent on the State, you have to jump through hoop after hoop. Today was yet another visit by yet another case worker. And really, they have been very cooperative….for that we are thankful.

But lately, she has begun to lose hope in the process. It is wearing her down.

Behind weary eyes she confides her fears……”It’s not going to happen, I’ve resigned myself to it.” She feels like giving up, and I am doing my level best to convince her that we are at the tail end. Right now, that’s my whole goal, to give a fresh supply of hope. To help her along and be her strength when she has none.

Just now, as I type this, her Mom is taking a plate of food out to the living room, balanced precariously. I know that potato chip crumbs will end up all over the floor I just vacuumed. But that part doesn’t matter anymore. That’s small stuff.

When you are a caregiver it seems like nobody notices all the hundreds of little things you do, certainly not the one you are caring for. Sometimes you need a little verification that God sees you, that He’s still there. Today, as she was finishing up at her Dad’s care home she noticed two folded pieces of paper half hidden under a tire. Something made her stop and pick them up. Opening them, she found two beautifully handwritten pages of prayers:

Two pages of hope.

At the top of each prayer was a verse:

Peace I leave with you; my peace I give you. I do not give to you as the world gives. Do not let your hearts be troubled and do not be afraid. John 14:27

Who is God besides the Lord? And who is the Rock except our God? 2 Samuel 22:32

Just when she needed it most, a sign…..and those notes may as well have floated down from Heaven itself. I would love to know who wrote two such beautiful prayers. They must have needed some confirmation as well. I find myself wondering what set of circumstances led them to it? We will probably never know, but I would love to tell them how much their words helped.

To honor the one who prayed I am including one of them below:

Often, when people are experiencing problems, or if they need advice, they turn to a friend for help. But human effort always falls short. If you find yourself in a difficult situation, don’t underestimate the power and love of God. Complete healing flows from an absolute and unconditional trust in and surrender to the living Christ. It doesn’t matter what your problem is, the only lasting solution is to be found in the unfathomable love which God through Jesus, bestowed on humanity. Never be too proud or too afraid to turn to Jesus. Lay all your problems at His feet. He gave His life for you and will grant you the healing balm of His peace.

I want to hold on to you Lord, when the storm winds blow and I feel insecure. Grant me your peace. Amen.

An unknown writer

 This is our miracle today. I thank you, whoever you are who wrote that. I hope you found the help and peace you were looking for, we certainly did.

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The grace to keep walking

Evening bird

“For whoever exalts himself will be humbled, and whoever humbles himself will be exalted. Matthew 23:12

Another step was taken down this lonely road we have been walking for the past 2 years. The social worker came to perform an assessment on Elaine’s Mom to determine what kind of facility she can quality for. It was a big step and one taken after much prayer and I will say, agony on the part of a daughter.

And no matter what anyone says and no matter how much the other family members support you? The decision still feels like a sack of cement on your shoulders. Yours and no one else’s. It is overwhelming. It’s a lonely place when you feel like fingers are all pointing at you.

The caseworker was late. And I was not being very understanding. “It’s not like they don’t know what kind of havoc this causes.” I said, not very graciously. Elaine had to be back at work at 1 and she was supposed to be there between 11 and 12. It was now 12:15. And Joyce was perturbed. She asked what time “the warden” was coming. We had to laugh a little at that.

I made myself scarce when she did show up. It is painful enough to have two people listen to how you can’t remember the answers to simple questions, let alone 3. So I bowed out as gracefully as I could, still being available if needed.

She asked all the usual questions….”Do you know your address, do you know whose house this is, do you know what date it is, what day of the week it is”……and over and over again. It was fail, fail, fail.

And haven’t I said over and over again since we started this that I felt a failure myself? A failure at patience, a failure at loving, a failure at showing enough kindness, extending enough grace?

From the other room, fiddling with my phone, I heard snatches of this and that, and I know that she looked to Elaine for the answers, and that she was prompted not to answer for her. They needed an honest assessment.

And it’s there I need to stop when I think of how tragic it all is, to end up where she is right now, and how terribly sad. I wonder how would it be to have strangers ask you questions that will determine where you go for the remainder of your life? Plumbing the depths of a mind that has become cloudy and knowing the answers aren’t there?

Putting yourself in someone else’s shoes has a way of bringing it all home.

And yet it is the best thing, the only thing. It is no longer safe to leave her alone. And it is the best thing for a  daughter, who is bending under the strain……who has almost forgotten how it is not to live under a dark cloud.

It has brought me to my knees over and over again, and Elaine much more than I. She has had tremendous grace through it all. She has treated her Mom with the kindness and nurturing that she herself was never given, even as a child. Now that’s what I call true grace. Jesus grace.

And really, unless we grasp firmly onto the Grace that Jesus offers, we are all sunk. So again and again, I can only thank God for giving us the hope that will never fail.

And for each new day, which comes with its own supply of fresh manna grace. I had to learn it again when I found out the case worker, bless her heart, has her own tale of heartache, which spilled out while she and Elaine were talking out in front of the house.

I feel the loving reprimand of God once more.

Grace, more grace, I pray.

Gratitude tips the scales

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O give thanks to the LORD, for he is good: for his mercy endures for ever. Psalm
107:1
 
We had our gift exchange last night, Elaine and I. It was our little window of opportunity for some Christmas quiet time and we took it.  Her Mom had gone to bed early, as she has done ever since winter has brought early darkness. It was a touch and go day yesterday, the Alzheimer’s was kicking in and she was a bit combative.  
 
At one point, Elaine peeked in the door and found that she had taken every last pair of pants out of her closet and piled them on the bed. Then she opened Elaine’s jewelry box and had the contents spread all over the bed. She said, “I don’t know where all this came from.”
 
And she has been going through other things in the house.  I guess that is common at certain stages of the disease, along with not wanting to bathe and the rocking and pacing.
 
It has been a very challenging year no doubt about it, and yet last night Christmas came there in our little island of peace by the tree. And all I kept saying over and over…”This is just too much, this is too good…..I don’t deserve it” and I was feeling it on the inside as well as the outside.
 
And it wasn’t just the gifts, it was everything that went behind the gifts. Because I know the giver. I know her heart, and I have never stopped seeing it give giving this whole year. That’s why it matters. 
 
And when you know the Giver of that most perfect gift the world has ever seen?
 
Only Endless gratitude can be the heart’s right response, no matter what the world throws your way. Gratitude tips the scales when you know God has already given you everything He has to give.
 
Today, I drove on an almost deserted freeway to put in my last day of work, but  in my heart, I am bearing treasures too many to count.
 
Thanks be to God for his indescribable gift! 2 Corinthians 9:15

The veil has holes

My walk in the woods

Last night was a very strange night. I cried almost all the way home and didn’t know why. I had a sense of foreboding I couldn’t shake. This school shooting has weighed heavy on my soul. Just too much heartache there for one incident. Too much sorrow for one town to carry. So I thought it was maybe that.

Then I thought about Elaine’s folks. I remembered the times when they were healthier and they would go to church with us. I still remember the day we almost dropped our teeth when her Dad unfolded his wallet and put money in the plate. We have both heard them say many times that “churches are only after your money.” Her Mom was even talking Baptism.

I asked God how it is that somebody can get so close to seeing a better way of life and turning away. To stepping all the way up to the river of life and then turning back around….leaving thirsty. 

Then I remembered how many times I had done just that.

When I came through the door Elaine was teary-eyed as well. “I think Mom’s having a heart attack…..what should I do?” She has been through this with her Mom already years ago. And she knew what to do, she just needed someone else to help her carry the load.

“Nothing,” I said….we do nothing because that’s what she said she wanted.

Her Mom’s own words were: “I don’t want to be cut on anymore.” And I can see why. She has been through cancer twice, including a mastectomy, chemo and radiation, 2 heart attacks, and a triple bypass. As a nurse, she diagnosed herself with Alzheimer’s around 10 years ago.

She is done with treatments. And hospitals.

But when you are the one standing there with life and death hanging in the balance, it’s not that easy. Our first instinct is always to do something. But sometimes the right choice is to let nature and God choose. Giving someone what they have chosen is the hardest thing to do because it’s right.

The reason Elaine knew that there was really something wrong was because her Mom didn’t fight her on anything getting ready for bed, and lately that has been the norm.

She went on to tell me that both cats acted strangely all evening. As if they knew something was wrong. Briggs wouldn’t let her Mom alone, he kept following her to her room and jumping on the bed. She finally had to close the door.

So we watched TV and prayed. Elaine had asked her Mom if when the time came, that she would ask God to take her soul. Her Mom said yes. There was no need for a big theological discussion. She knows where salvation comes from, she was raised on it.

And all the while, I remembered how last Christmas was spent in the hospital with her Mom, alone…and I vowed it would never happen again.

Today when I called at lunch she said they were at Subway and her Mom was eating and felt okay, with no recollection of ever feeling bad.

And today, I am feeling how just thin that veil between life and death can be.  Any one of us could be instantly on the other side, and not necessarily who you might expect.

Of missed Messiahs and plans that don’t gel

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The mouse hovered over rental car sites but as yet no reservation has been made for the Christmas trip.  She hovered over an ad for the Messiah and I said, “Let’s go……..Friday night it’s at the Mesa Arts Center.” She said, “You can just meet me there after work.” It’s one of our favorite things to do around Christmas.

“But what about your Mom, would she be okay here after dark?”

“Probably not,” she said. And as 29 seconds were left on the timer, she unclicked the button that would have reserved our seats in the mezzanine, right on the end. We sighed again for one more thing we missed out on this year.

The truth is, sometimes Christmas is made up of “missed Messiah’s” and “plans not set.” But Christmas has a way of coming anyway. So we find joy in the little moments of the season. Sitting by the tree in the mornings, listening to Christmas music, ushers in peace before the clatter and commotion of the day. Watching the cats play around under it………Seeing angels and bells and stars take shape in the oven as the smell fills the house.

And one day after Christmas, all this rushing around will cease to matter. I was reminded yesterday what does matter. The cross is what matters.

We look to His birth and resurrection and while those are wonderful miraculous events, what really speaks to us is His suffering on the cross. We look at Jesus pain and can no longer ignore the fact that He sees our pain too.

It is only at the cross that we see the great magnitude and depth of His love for us. You can hardly ignore a naked, dying man on a cross. And as Louie Giglio said in his message yesterday, our own pain is the megaphone through which the world learns about Christ.

And while we celebrate His birth, the cross is what continues to speak the loudest. And when we compare our pain to His all of our arguments fall silent.

When we gaze at Jesus on the cross, we can no longer say that we have a God who is unwilling or un able to enter into our greatest pain.

He is and He does, every single day.

A voice cries:
“In the wilderness prepare the way of the Lord;
    make straight in the desert a highway for our God.
Every valley shall be lifted up,
    and every mountain and hill be made low;
the uneven ground shall become level,
    and the rough places a plain.
And the glory of the Lord shall be revealed,
    and all flesh shall see it together,
    for the mouth of the Lord has spoken.”

Isaiah 40:3-5

Conviction in the Kitchen

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My little place of prayer

We had a Thanksgiving dinner yesterday.

The one we would have had if I had not worked and she had not been gone. It was perfect, just the favorites, turkey, stuffing, dumplings and cranberries, not even anything green, which is almost impossible for me to do.  We played Christmas music and sang in the kitchen while we were cooking and it was a good afternoon. There was only one mishap when we left for a few minutes, but it turned out okay. The timer went off earlier than we thought and it was buzzing when we came in the door and instead of turning the oven to off, Joyce had turned it to broil.

The foil “tent” saved us. And it hadn’t been on very long, luckily.

Elaine made Joyce’s plate first and got her seated, which is extremely necessary otherwise her Mom will stand in the middle of the kitchen not knowing how or where to start.

It was hovering in the air……the prayer I felt. You can’t very well have Thanksgiving without a prayer. So I snagged her as she fixed her plate and made her a party to my “on the fly” prayer. She bowed her head as I prayed, what else could she do? I said, “That’s okay, right? I wanted to avoid…….” Of course, she knew what I was trying to avoid. The prayer at the table.

Because to be honest right now? Praying at the table is hard because I have all these conflicting emotions. To be honest I want to gulp my glass of wine and start eating. Mealtimes have been stressful, not relaxing.

She looked up after my hasty Amen. She knew I was looking for justification. She said, “Do what you can live with in your heart.” And the words dropped like warm rain of grace onto my heart because she said them with such love. “Yes, it would be easier not to, and my Mom really doesn’t care one way or the other, but it’s for Him.”

And those words of conviction hit their mark like fiery darts. She and the Holy Spirit were working as a team and it really wasn’t fair. But she was right, and there was power behind her words; it’s how she has lived these very hard two years, really the whole of her life.

Because though her parents have never treated her right, she has been Jesus to them, again and again.

We got seated, and with a freshly washed cleansed and convicted heart, I said a prayer. And I felt it.

As I prayed this morning in my “Prayer Shed” I thanked God for friends who love enough to convict me and turn me around. Who don’t cut me any slack. And I know she is thankful for me for the exact same reasons.

Thanking the Lord for His endless patience with me today.

When you feel stuck

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We were pulling into Home Depot, taking back some citronella oil to exchange it for some plug adapters for the Christmas lights we were putting up. We were talking about “the Decision” yet again, the one that would place her Mom into a care facility.

She said, “Living has become a chore, I am so exhausted all the time and my joy is gone.”

I sighed for her, “Yeah,” I said, “The exhausting part is that you are continually having this debate with yourself about how much is too much and if you have reached your limit yet.” Is there a limit?  It’s like  the Chinese water torture.

Drip……I can’t take anymore…….Drip……..Have I had enough? Drip……..I’ve reached my limit…….Drip…..I’m okay……Drip…….No I’m not…..Drip……I am going insane……Drip…..Drip

One day is terrible and then the next is not too bad so you go on. Is there some definitive answer out there as to how much is too much? If there is, would someone tell me? Would God tell me? And when the entire decision rests on your shoulders it’s a very lonely place to be.

The debate is endless, like fishing for the right answer but the right answer doesn’t come because your emotions are so tied up in it. The right answer could very well be staring you right in the face but you’d more than likely talk yourself out of it.

The wearing down of your body, mind and soul takes its toll. The way it should happen is this: one definitive stone is tossed onto the pile of rocks that are stacked so precariously. It’s the one stone that would remove all doubt and make the decision easy.  The pile comes toppling down and then you know it’s time.

And when you’re a Christian, while you thank God you have Him because you surely couldn’t do it without Him, you also wonder what He expects. You want to do the right thing but sometimes it just feels like  God is up there waiting for you to say “Uncle.” When your shoulders are bowing under the weight of your own personal cross, it’s easy to forget that Jesus stands ready to shoulder the load for you.  He carried the biggest one already. So today, whatever it is you are going through, pray this prayer:

Father, thank you for loving me enough to send your only Son to carry the big burden once and for all so that He could also handle our smaller ones. I give you this today, right now. I can’t carry it anymore, it’s too heavy. Lighten my load and the sadness in my heart and give strength to my weary bones. In Jesus precious name, Amen.

This past week, the call was made to set wheels in motion for placement. And it was and is, very, very hard. It’s hard because it feels alot like failing even when nothing is further than the truth. That is a lie from the enemy.

Ultimately, no one can tell you when that time is right except for you.  When you know in your heart of hearts that you did all you could do, and you know that God knows too; that is when you take that peace and hold it close, and know that you can do a “trust fall” back on God and know that He’ll catch you.

Every single time.

When Christmas seems impossible

She said, “I don’t know if I can go through with it.” It was all getting too complicated. “It” was the trip we had planned over Christmas. Saved for and scheduled. One of the most frustrating things about caregiving is you can never quite look forward to anything. Like the mirage of a flowing stream in the desert, plans have a way of vanishing as soon as you get too close. She said, “I didn’t want to mention it today, because I knew it would make you sad.” We were going up the escalator in the mall, and I felt the cloud of it following us. I knew she was overwhelmed. And again, I felt the injustice of it all. The pack on her back is getting heavier and no one is stepping up. Not even for a week.

Just then I remembered what I used to hear my Dad say every Christmas, “All I want is to go to a cabin in the woods.” He used to get a light in his eyes as he said it. I never got that, but I do now. The peace and simplicity of it all beckons like never before.

“Why do they get a choice?” I said, “Where is your choice?”

“It’s not as if you were waving your hand and saying, Pick me, pick me, when all this was decided.”

And still trying to take the blame, to shoulder it all, she says: “Maybe I should have handled it differently in the beginning, made them take part of the responsibility.” But the truth is, they still would have backed away, made excuses as to why not.

We made our way to the children’s section…….we were shopping for Birthday gifts for my niece,  having a day of purple in her honor. It’s her favorite color right now. I found the sweater with the lime green heart I saw in the ad, but we couldn’t pass up the striped top with the matching down vest. Kohl’s yielded a pair of purple boots and we were all set.

Later, as we sat at the food court watching people weave around and through us, all the humanity. All of us in the muck and the mire of being down here living life and I get the feeling that so many of these people have no idea what they are supposed to be celebrating. She said, “If I have to put her in a home over Christmas?” She didn’t finish, but I finished for her. “I know,” I said, “Your Mom hasn’t cared about Christmas for 30 years, but you do.”

Her head nodded affirmative…..sadly.

And last night after the Mall I watched her as she sat at the kitchen counter, separating out the purple sprinkles from the rest so that Lauryn would have a dash of purple on the swirl of pink cupcake that would go in the Birthday box. I thought of the Bible verse that says, “Greater love has no man than this, that he lay down his life for his friends.” I thought, how blessed am I to have a friend who would, who does.

But honestly, I wondered. Where is reward for that kind of love, and should it not be rewarded? The outrage of it all flared at my heart. I remembered where she spent last Christmas, alone with her Mom at the hospital, not even knowing if she’d make it through. And all of a sudden, what I want more than anything in the world is for her to be happy, to be able to go on this trip.

And despite all this impossibility……Jesus touches down. In our hearts. And I am so thankful, because He turns impossibilities into possibilities.

Each and every day by His grace.

Note: this was rewritten, my earlier one was deleted. Sorry for any wierd posts today!

Random Thoughts on a Saturday

 

It’s been a long week. I am still lamenting the absence of turkey leftovers in the fridge. I could just taste it….mayo, big chunks of meat, dressing and a bit of cranberry and a liberal amount of salt piled on bread….Mmmm. I just may have to do a little turkey on my upcoming days off.

Yesterday the day just dragged out mercilessly. I finally crept out to my car at around 11 and put the seat back to catch a cap nap, but I couldn’t get comfortable. I crawled in my small back seat and with bent knees I arranged myself in a somewhat sleepworthy position. There in the back seat a memory of a long ago time came back and I wasn’t expecting it. No one was more surprised that I was when the tears slid down……

When my brother and I were small, a Volkswagen bug was our family mode of transportation. The seat folded down in the back and we loved it. Back then there were no DVDs to watch, just the hum of the 1967 Bug. We were together and it was a good time. We watched cows drift by and slept on and off and played Slugbug.

It was the nostalgia of it all that brought forth tears, that, and realizing how much time has gone by and how fast. The sorrow we have both already lived through, the death of both our spouses, what are the odds of that? And I prayed for my brother right there in that back seat, because he needs a touch from the Lord right now.

Don’t we all?

I got through the day and realized I had to brave Wal-Mart and it was still Black Friday. I thought maybe it wouldn’t be too bad. It wasn’t, but I still couldn’t wait to get out of there. After that I stopped by Panda to get  Joyce some food and she informed me when I came in the door that she needed a map to the house. And that it was after 6:30. I didn’t want to ask what prompted the map thing. I think she was glad to see me though.

I made her plate and told her it was on the table, and because the house was sealed up like a tomb, I ran around opening windows. It was around 80 in the house. After dashing in and out with groceries, and working up a sweat, I noticed her fixing herself another plate. Then she struggled with the tea because we usually make it for her and set it by her plate. Finally she was settled at her place and I did my other jobs.

The cats were still safely inside and I was thankful. She let Briggs out one day and my cats never go out of the house. He was dirty and a bit scared I think, but he came running when Elaine called. So that was making me nervous all day. One hop over the fence and out in the road and they would be goners.

I thought for the thousandth time, how in the world Elaine has done this for two years. Only God’s grace is how.

I settled in front of the computer for a while, and talked to dear friends via FB. And talked to my Mom on the phone and Elaine from Las Vegas. I got some texts from Heather about Christmas plans.

And God touched down once again through His people. I am blessed.