Saturday, May 12, 2018

I'd Give Anything for You

At first, you can't believe this is happening. Then you start worrying about the future and what it's going to look like. And so you obsess about finances and wonder how you're going to pay for what's ahead. You start imagining yourself moving in with your kids or eating cat food. You knock on all the doors, put your affairs in some kind of order, and prepare yourself to live on what's left over. If anything. You've done all you can logically and legally do, and then what? You're a person who likes all the ducks to be in a row, but you can't find the ducks right now.

While you're caring for your loved one and organizing your future in your head, life is happening. Time is passing. You start to focus less on the future and more on the present. What will be, will be. Really, all you have is today.

Today, you're sitting next to him, holding hands, wondering if he even knows who you are. But you don't care about that, really. You have stopped thinking about yourself and what you will do, how you will cope. Who cares? What you care about now is being with the one you love while you can, while there's still the possibility of connection. No matter how fleeting.

You gaze at him like you did when you were young. You flirt with him. You play his favorite music and dance with him in his room at his new home. He can only sway to the music, but that's okay. You kiss him and tell him you love him, he's your one and only, your man, your true love. You run your fingers through his hair and touch his cheek tenderly, breathing him in, feeling the warmth of his body next to yours. You hold him a little tighter. And you realize that you would give have him back again, healed and whole, to grow old together and enjoy your grandchildren and travel the world. To take one of those crazy vacations again that left you exhausted from driving thousands of miles in just a few days, only now you could take your time. Or even to just go camping in the woods like you used to do. And speaking of camping, you would gladly live in a tiny travel trailer in the middle of the desert if it meant you could be together as you had planned.

You are about to cry, but you don't. You don't want him to see you crying. You can wait until you're on your way home, alone in your car, to do that. You want him to see you smiling encouragingly, to recognize your presence as something he looks forward to, if he still looks forward to things. You want him to know your name. But if he doesn't know your name, you at least want him to think of you as that nice lady who comes to see him. You want him to smile back. And he still does, sometimes.

Friday, April 27, 2018

Grief Neverending

This morning, I decided to go to a local coffee shop to read a bit and just hang out. This is something I used to do regularly before the heartbreak of Alzheimer's was visited upon us.

The young women who work at the shop are so beautiful and vibrant and encouraging. Today, though, one of them shared with me that her grandfather was recently diagnosed with Alzheimer's. She was telling me all the things she is learning, reading, experiencing. The progression of this disease can be rapid or slow, but it seems to take a parallel path with the family, no matter the speed.

First the disbelief and shock and denial. Then the learning curve as family members do their best to discover all they can to help their loved one and to understand what's happening. Acceptance is picked up, examined, and put down. And denial is revisited. With every Facebook post about dietary changes, coconut oil, new research on the other side of the globe, promising medications, and anecdotal stories, hope rises. Then crashes angrily. Despair pays a visit, as nothing that's tried seems to make a lasting impact on the condition of the loved one.

Grief, which started with the diagnosis, ebbs and flows throughout, like the tide. It comes with each downturn following every plateau that looked like a new normal, but wasn't. It comes with every realization that decline is inevitable, with every lost memory, with every lost skill, with every lost function. Grief dashes hopefulness onto rocks of despair, slowly, slowly tearing at the veil of illusion. It rips your heart into a million pieces. Over and over again.

It's relentless. It follows you into your dreams, so you get no rest even if you have a chance to sleep. It's always there, patiently waiting for the time when you're weakest so it can send you another crushing blow. It does not lighten with time, because it's always fresh. Every day. Multiple times a day. And you know it's going to be fresh every day, multiple times a day, in every day to come until the end inexorably arrives someday. And then it will sucker punch you again, but in a different way.

I am exhausted from grief never ending. I am tired of grieving over and over and over and over in a process that repeats itself again and again and again. For years. And years to come. It's enough to drive someone mad. I don't know what people do who have no faith. I don't know how they can emotionally survive this torture. Bless them with Your presence, Lord. To be grief stricken is one thing, but to have no hope as well? I shudder to imagine it.

Sunday, April 22, 2018

Cooking for One

I went to the grocery store
By myself
The local grocery store
Not Costco
It felt weird being there

How do you shop for one?
How do you cook for one?
I have no idea
But I can't continue not eating
Just snacking
If that

I picked up a bag of apples
But I didn't need a whole bag
I just needed one apple
Or maybe two
So I put the bag back
I didn't want apples anyway
So I took a mango
And added another

I foraged aimlessly
Here and there
Picking things up
Reading the labels
Putting them back
Filling the produce bags
Then emptying half

Back at the house
I unpacked the bags quickly
Then stared at the food
Aghast at the abundance
Will it rot in the fridge?
That's okay
I'm in a daze
And on a learning curve

Figuring out
A new way to live

Wednesday, April 18, 2018

I Live Here

It's sundowning time. I've been asked to come for sundowning time every day. I'm walking with my husband along the hallway that lines the circumference of the place. We go around once, twice, three times, expending any nervous energy that might be building up. But he doesn't seem agitated at all. He is doing well today. We are making "conversation."

"Where do you live?" I ask.

"Here," he responds.

"Do you like it here?"


"Is the food good?"


"Do they treat you well?"


"Are they friendly?"


"What's your name?"


"What's my name?"

"That girl."

He seems to be settling in. He does not beg to go home or cry when I leave. He didn't even do that on the first day. I suppose I should find comfort in this, at least. And I do, sort of. But it's so, so hard. And our house seems so, so empty.

Wednesday, April 4, 2018

The Chair Massage

Sundowning is challenging, and especially so given the new location, the strangers all around, and the general hubbub of the place where my husband is now. It would be a tough adjustment for anyone, even those of us who are well. I was wondering what I could do to help him cope. Having had a massage that morning, I decided to try giving him one. Massages are fabulously relaxing and a great way to let go of nervous energy. Everyone should be treated to them as often as possible, and especially so under my husband's tension-inducing circumstances.

He was sitting in a chair in the dining area, and I was standing behind him, giving him a back/shoulder/neck rub. He was slouching over a bit, so I have my free arm around him to support him. I suppose it looked like I was hugging him from behind while rubbing his shoulders. One of the elderly female residents ambled over with her walker, curious about these goings on.

"Is that your husband?!" she asked somewhat accusingly through squinted, flinty eyes. Clearly, she thought something untoward was going on here, and she was having none of it.

"Yes, he is," I responded calmly, giving her one of my very best and most sincere smiles. It required some effort to not smile in a laughing sort of way.

"Oh, okay," she muttered, defeated, turning around and going on her way. (It's all right. I'm sure she won't remember the conversation.) I chuckled to myself.

My husband may be a piece of work for the caregivers, but apparently he's a hit with the ladies already. Perhaps this is so because he can still stand up and move his feet, unlike so many of the residents. Three individual members of the staff have shown me videos and photos of him dancing with a variety of them. Or perhaps the more things change, the more they stay the same. He's a rakish charmer, that one.

Time Has Come

Today marks one week since my husband has been at a memory care facility. I have come to the realization, at the insistence of my children (all of whom have spoken with me privately about the matter), that though I was viewing this placement as temporary, it's "time." I had researched the facility, visited the facility, he had even stayed at the facility for a week previously and done well. Well, well enough. But what a rocky start!

While I am aware that these things are never easy, I didn't have any appreciation for the potential difficulties, pitfalls, and emotions that could and would meld into a perfect storm. The complete reversal of a finally "normal" sleep pattern that I'd been working so hard to help him accomplish. The resultant behavioral issues leading to what looked to me like standoffishness and apparent rejection of my beloved by the staff. The communication breakdowns. The anger and disappointment I felt after finally coming to a decision and still not getting a moment's peace or rest. The call from the administrator after only four days -- on a Friday -- that the placement would not work and that a different placement would need to be worked out was a bitter disappointment and stressor.

Though I had been advised to stay away for the first few days of placement, I was now asked in a panic to come immediately to help calm my husband down. When I arrived, he was asleep in a chair.  It was strongly suggested that I spend as much time there as possible, especially during sundowning. The following day, he was a zombie from lack of sleep or inappropriately administered medication (not enough? wrong time? too much?) or...who knows what? I was aware that he had no idea who I was. He knew my name, but he didn't know me. Thank goodness my son decided to stay by my side all weekend, because I'm not sure I would have been able to survive it emotionally while waiting for the hammer to drop on Monday. I wanted to just pack up my husband's things and bring him home, because the situation wasn't working for anybody. And I was sure I could do a better job of taking care of him myself. I was furious. And traumatized. Again.

Monday, I engaged an agency to help with searching for a "board and care" location closer to home. My daughter and I visited several homes. It's interesting the mix of things that are available for about the same price, which is all the more reason for taking one's time with these decisions. I told myself I wouldn't be the first person to have to place, replace, and place again until the "right" blend of location, care, and adjustment can be found. I had resigned myself to the idea, even.

And then I went to spend sundowning time, the most difficult part of the day, with my husband. I parked my car, said a quick prayer, and took a deep breath as I walked through the door. And there he was, sitting at the dining table, being his "usual" self! He was pleasant with other residents and eating his meal rather than sleeping in it. He wasn't agitated, angry, or aggressive. It was downright miraculous. He was having a good day. The staff was relaxed and smiling. The administrator called me into her office.

"He's having a good day!" I smiled. She smiled back.

"Yes, this might work," she offered, "Let's give it a try."

And just like that, the cloud hanging over my head lifted. For a while, anyway. Hopefully. If he continues to have relatively good days. It can take weeks for a person in my husband's condition to acclimate to a new living situation. I know that. She knows that. We all know that. We're going to give it a few more days. And we'll see what we'll see.

Wednesday, March 28, 2018

A Bitter Pill

The past couple of days have been excruciating. I checked my husband into a care facility yesterday for another, longer respite. Last time when I dropped him off, it wasn't as traumatic at all, because it was just for a week. This time, it's for a month. At least a month, and then we'll see.

Filling out the paperwork was a lengthy, drawn-out affair with plenty of warnings about things that could go wrong, the probability of medication changes, the inadvisability of visiting for a few days, and all kinds of things that made me feel, frankly, like I was abandoning my husband to the whims of others rather than simply passing the baton for a while.

I put his favorite blanket on his bed, placed some older family photos (because I thought he might remember the younger people in them) on his nightstand, and organized his clothing. I made sure he ate his lunch and was comfortably ensconced in the television room with his new roommate, someone we have already visited with a friend several times. I took that to be a happy development.

But the closer it was to a good time for me to leave in order to avoid rush hour traffic, the more anxious I felt. The more emotional I became. The harder it was for me to smile and combat my tears. Somehow, even though in my mind it wasn't yet a permanent placement, I felt I was betraying a trust. I was leading a lamb to slaughter. This man who was gazing at me through confused eyes was counting on me, and I was letting him down.

How's that for believing a lie? But those were the thoughts going through my head, and I had to beat them into submission. I felt ill. There's just no way I can remotely come close to describing the experience. I was heartbroken and am bereft. Golly, I am weary of being bereft. There is just nothing uplifting about this long goodbye.

The end of March and first of April is already an agonizing time for me, with deep sorrow and painful memories. And now another one has been added to the list. I must press in close to my Lord, my Helper, my Friend, my Redeemer. There's a reason Psalm 121 is my favorite.