A Christmas Miracle

Last Saturday morning, my husband had a seizure. Actually, he had another seizure. They don't happen often, but they do seem to always happen on a Saturday. I haven't figured that one out yet. Every time the phone rings now, I answer it with dread. Anyhow, his medications were reviewed, adjusted, and a new medication added. I don't know if the meds had anything to do with it, or if it was ardent prayer, or what, but what we've witnessed the past couple of days is a Christmas miracle!

He gave me a hug!

On Christmas Day, our eldest son and I went out for a visit to the facility together. We expected that my husband would be roaming around aimlessly, barely acknowledging our presence, and perhaps even sleeping intermittently. Like last time. Instead, he was animated (for him at this point) and obviously excited to see us. He was all smiles, reaching for my hand, reaching for our son's hand, drawing us close and sighing with satisfaction. I think he definitely knew who I was, and I'm sure he also recognized our son. He even responded to our questions and comments with a word or two. We were both absolutely thrilled!

The following day, my husband's sister (or, as she says, "his MUCH older sister") called to ask if it would be okay to visit my husband with her daughter. Of course it would! I had been at the facility for a while, doing hugely successful music therapy with lots of smiles and even dancing, when they arrived. The last time his sister visited, not that long ago, she cried when she left because my husband looked so poorly and seemed so weak. It hurt her heart. But this time, there he was smiling at her and smiling at her daughter, holding her hand, responding to her words and touch. And not just because she brought Christmas cookies, either. It was wonderful and so unexpected. Two good days in a row. Two extremely good days, two miraculous days.

Dear reader, I am well aware that the next visit might not be as fabulous, or that I might at any moment get another dreaded phone call about my husband's condition. But on this, the First Day of Christmas, I am deeply grateful for this Christmas miracle.

Final Arrangements

December 6, 2018

When my father died, I went with my mother to the funeral home and to the church to arrange for his burial and memorial services. She had been hit hard by his demise, as is generally the case, and she was in no condition to make even the slightest decision. Instead, she just looked at me, her eyes tearful and pleading for it to all go away. It was an effort for her to breathe, and she was utterly devastated and in a fog. It broke my heart, which was already hanging by a thread because of my dad's death. It wasn't even an unexpected death, as he had been suffering from dementia for years and had suffered a major stroke almost a year before his transition to Heaven. Yet, when the end of life comes, it always seems to be a surprise. One is never quite ready for that last breath. Ever.

I have been thinking it would be a good idea to get the initial planning underway, should my husband predecease me, so I won't be caught flatfooted and completely unprepared when the time comes. The hospice chaplain had brought up the subject during our visit, and I decided I'd put it off long enough. So this afternoon, I went to see our local funeral director.

I've known him on a professional level for years, as I was the administrator at a church and had assisted the pastor and the undertaker at countless services. I appreciated the caring way he had shepherded families through this difficult process in the past, and so I had made an appointment to talk things over. He couldn't have been nicer, and I was pleased that he remembered me.

I told him what I had in mind, and he helped me to think through what was needed without pressuring me, "up selling" me, or making me feel like a cold, heartless person for asking him mercenary but necessary questions about costs. He gave me all the information I needed in order to come up with a basic plan, more or less firm but allowing for unforeseen circumstances. Then I went to the church to lay a foundational outline there, basically giving the administrator a "heads up" and receiving much information and encouragement in return. The world is full of good people who want to be helpful.

Feeling relieved to have taken an important and difficult step, I did what anyone would do under the circumstances:  I had a massage to get rid of the tension in my neck and shoulders! Caregivers, self-care is so important. Believe me, I know it is difficult to set aside time for yourself. But for your own health -- physical, emotional, spiritual -- and well being, it's vital that you do so. As others have been telling me for years, you won't be able to take care of your beloved if you haven't taken care of yourself. Please take this to heart, because it's true. I learned it the hard way.

Holy Communion

One of the services provided by hospice, along with nursing, social workers, physical therapists, and so on, is chaplaincy. Spiritual concerns are naturally a part of dealing with a terminal illness, and Chaplain David is there to help us and our family when we need spiritual or emotional support during the difficult days ahead. We have a wonderful and supportive pastor and church family involved, too, but it never hurts to accept help when offered. Since hospice chaplains serve hospice patients exclusively, they have a lot of experience caring for people in this specific situation.

One of the things that started weighing heavily on my heart recently was that my husband had been without the opportunity to have Holy Communion (Luke 22:19-20) for months. What with being transferred from place to place, hospital visits and stays, stress upon stress, I'm kind of embarrassed to admit that it hadn't crossed my mind. So, when I requested chaplain support and met Chaplain David, one of the things I asked him about was Communion. Would he be able to do that for us? The answer was, "Yes, of course!"

We scheduled an appointment at the facility and sat, just the three of us, in the "quiet" sitting room. There are two sitting rooms in the L-shaped great room:  one with a television set and recliners, and this one with couches and a fireplace. The chaplain prepared the elements, all the while chatting to  keep my husband as engaged as possible. I held my husband's hand as the chaplain prayed. When the bread (a small wafer disk representing Christ's body, broken for us) was served, I took a piece for my husband and held it up for him to see. He opened his mouth, and I placed it on his tongue. I heard it crack as he bit it, and he clearly said, "Thank you." It was heartwarming.

Next we were served tiny cups containing the grape juice (representing Christ's blood, shed for us). I lifted the cup to my husband's lips so he could take a sip, then nervously wrapped his fingers around it so he could hold it himself. I watched him carefully to make sure he didn't spill it. He finished the juice and sat back, leaning against me. He closed his eyes and nodded his head. Was that a smile on his lips? "Glory," he said.

Glory. That is not a word he would ordinarily use, especially now that he's almost completely non-verbal. It was stunning. Did he see something in that moment? Did he hear something? What was going through his mind to prompt him to say that? I wish I knew. And someday I will.

Dear reader, perhaps you are a believer, and perhaps you aren't. Either way, something mysterious and spiritual happened for my husband and me that day as we shared the Lord's Supper. It was a gift from God that brought peace to my heart and rest to my mind. He is so, so good to us!

Puppy Therapy

I'm dog sitting this weekend. She's a very sweet Bichon, mellow with age, and loves nothing better than human attention. After collecting her, with permission, I thought I would take a chance and bring her with me for my regular trip to the care facility rather than driving her back to our place and adding another 30 miles to the commute. Other dogs had visited, so why not this well-behaved, lovable, and well-groomed pooch?

When we walked into the house together, the more lucid residents brightened up and asked if they could pet her. Well, of course! She really ate it up, and it was easy to see that it was love at first sight for the residents. There's just something about petting an animal that's soothing and relaxing and gentle and joyful.

My husband was just getting up from a nap, with a little coaxing and help from staff and me. Once we transferred him to a recliner, the dog jumped onto his lap and curled up. I thought he might be a little startled by that, but a beautiful smile spread across his face again and again as he scratched behind her ears and petted her. Naturally, I wasn't able to capture one for the camera, but it was the most thorough series of smiles I've seen from him in a long time. And he said, "Doggie!" Wow.

The staff let me know there hasn't been official "puppy therapy" at the house for a while. Volunteers can be hard to come by. So they encouraged me to bring her back when I can. That sounds like a good idea to me, assuming her owners will allow it. What do you think? Will they?

Happy Thanksgiving

During our music therapy yesterday afternoon, my husband was swaying to the music coming through his headphones and singing along unintelligibly. His eyes were shut tight and his facial expression oozed sincere effort as he held me, dancing. It was so sweet. He used to do this in the old days, and then he would smile and laugh self-deprecatingly. He didn't have confidence in his singing, but he actually sang quite well. I don't think he believed me when I told him so back then, but maybe he does now.

Something about the music or lyrics made him open his eyes, and they started to fill with tears as he looked out the window into the distance. Was he remembering something? Trying to remember something? In the moment for a moment? We looked into each other's eyes, smiling through the mist. Just briefly, so briefly, it seemed he was aware and with me. Or maybe he was elsewhere entirely, and I was reading too much into it because I desperately want our connection to be strong.

A bit later, he surprised me. I was taken aback. He said my name! It has been weeks since I last heard him utter it, so it was quite unexpected and pleasing. He was irritated with me at the time, so it was the familiar, exasperated "ChrI-i-Is!" from days gone by. He was frustrated because I was trying to divert him from the room of a bed-bound, very sweet lady. I'm told he likes to walk in and stand briefly just inside the doorway as if checking on her. Then he turns around and goes right back out. She doesn't seem to mind, if she's even aware of it.

He did the same thing when a gentleman at the house was transitioning to Heaven. It was as if my husband didn't want him to be alone. I can't explain it. I think it's the gentle, compassionate side of my man, unimpeded by filters and walls, showing itself in an endearing way. It gives me peace that, somehow, he appears to have empathy for the plight of others. Or maybe he's just wandering into other people's rooms.

It's Thanksgiving Day, and we have much for which to be thankful. But it's the first Thanksgiving without my husband at home, so it's sad, too. Thank you for reading my ramblings and being patient with me and encouraging me. I am thankful for you, for your support, and for your prayers. Tell your family you love and appreciate them today, even if they drive you crazy. Happy Thanksgiving!

Comfort Care

October 21, 2018

Here's the thing:  There's a big difference between accepting something in theory and wrapping your head around something that's become a reality.

You've done all the reading, so you "know" what to expect, what's coming, what's inevitable short of an absolutely miraculous intervention from God. And you think you are prepared, because you know what you've learned. But guess what, boys and girls? You are not prepared. Not at all. And there's no way you possibly can be.

You know that "comfort care" (sounds so much better than "hospice," doesn't it?) is getting closer. You know that, in your head. But when it's actually spoken out loud by the medical team, when your heart races, and your breathing becomes frantic and shallow, and your skin prickles all over, and your stomach sinks, and your throat closes, and you break out in a cold sweat, and your eyes fill with tears, and your body somehow feels disconnected from your mind -- your mind that can't think -- that's when you realize that you can never, ever be prepared.

You wonder if there's anything you could have done differently, if there's anything you overlooked or thought wasn't important, if there's anything -- anything -- that could have made a difference. But there isn't. There really isn't. You did the very best you could do, but it just wasn't enough. It could never have been enough, because there's nothing -- nothing in this world, at this time -- that could have changed this outcome.

It isn't over. Not yet. But it sure feels like defeat. I'm told I should not look at it that way, that I should think of it as just another phase, a progression in this illness. But everything in me resists this way of thinking. Acceptance has not yet made its deposit in my heart.

Even so, I must now make a decision about which hospice provider to enlist. And then the "hospice team" will do an evaluation. If they determine it isn't time yet, I suppose it won't be long before that time comes. I've read it's best to bring hospice into the picture as soon as your loved one "qualifies." That makes it sound a lot like having gone through the preliminaries and now being privileged to run the "big" race. And I guess it is exactly like that, in a way.

Hebrews 12:1

Is That Your Father?

It's happened to me twice now at the memory care facility where my husband resides. Today, I was combing his hair and speaking to him softly. The other day I was sitting next to him, holding his hand tenderly.

"Is that your father?" comes the question from someone younger who's visiting one of the other residents.

"No, this is my husband."

"Oh!" and the facial expression clearly indicates a slight embarrassment at having made such a supposition, along with undertones of assumption about our respective ages at marriage. Not that a big age difference would be a bad thing. Of course.

For some reason, at this point, I feel as though I need to explain that my husband is not quite a year and a half older than me and that he is in the later stages of Alzheimer's. This results in a look of pity followed by another, "Oh."

He hasn't ever looked a lot older than me, because he isn't a lot older. But I guess the ravages of this disease have taken a toll on him that I only really noticed in recent photographs. His cheeks are a little sunken in, his eyes are duller, his hair is losing its luster, his frame is thin and gaunt, his shoulders hunch over. He has "little old man" posture. Most of the visiting spouses (if any) are older than I am, so on the one hand I suppose it isn't surprising that younger people might assume the usual octogenarian age group and mistake him for my dad. But on the other hand, it's a tiny bit distressing.

This disease is so cruel and relentless. It steals everything from you, every bit of your dignity. And then it robs your family, too. It robs them of you. And then it robs them of good memories of you, because it goes on for such a long time that many members of your family have never known you or don't remember you any other way. And that's really sad.

Losing Weight

My husband has always loved to eat and was happy to consume anything that was placed in front of him. I was happy about that and flattered myself that he liked my cooking, which I worked diligently to improve as time went on. But the truth is that he liked everybody's cooking. And that's a good thing, since institutional cooking isn't always what you'd call "gourmet."

But he can't feed himself now and is dependent on others for his nourishment. Would you like him to have a sandwich (and here I mean nut butter and jam, not turkey and bacon and lettuce and tomato, all of which would fall out and make a mess) or drink a glass of water at snack time? He might be looking at what you're offering, but sometimes it's as though he doesn't see it. He may or may not reach for it. You will have to place the item in his hand and wrap his fingers around it, encouraging him to raise it to his lips, open his mouth, and take a bite or a drink. Step by step. Happily, he can still chew and swallow.

At mealtimes, he may or may not approach the table when encouraged to do so. He may or may not shuffle right past you as you offer a chair. He may sit down, or he may walk away. Is he refusing to sit, or is he unable to understand? Does he forget what he's doing as he's doing it? It's hard to say. It's impossible to know whether he's confused about the whole thing or whether he knows what to do but can't, or won't. He's unable to verbalize his needs.

He can no longer navigate silverware and must be fed, one mouthful at a time. The caregivers tell me that they often simply follow him around with his food plate, offering a bite now and then until he's eaten everything. I know this is true, because I have seen them do it. And I have done it, too.

Even though his appetite is good and he is eating well at mealtimes and at snack times, he appears to be losing weight and muscle. His clothing is now too large and hangs on him loosely. Perhaps this is because he generally paces intermittently when he's awake, burning calories.

Or perhaps it's just the normal progression of Stage 7. Your body eventually stops being able to absorb nutrients the way it should, even though you are eating plenty of food. Here's a pamplet I found about that, if you'd like more information. And here are some photos, so you can see the progression for yourself.

October, 2017
One Year Ago
Looking perfectly healthy. Looks can be deceiving.

End of March, 2018
Just before initial placement, just over 6 months ago.
Still looking healthy, but a sea change in the dementia from
same time the year before.

End of June, 2018
Just over 3 Months Ago
Recovering from sepsis and adjusting to new surroundings.
At his 4th place in 3 months.

October 10, 2018 - Yesterday. Heartbreaking.

Middle of July, 2018

Middle of September, 2018

October 10, 2018 - Yesterday
His leg on the left, mine on the right.

Love Me Tender

September 19, 2018

My husband was unexpectedly engaged today when I went to see him in the late morning. The other day, he greeted me with "Oh, hi there!" and a big smile. That was both a shock and a surprise in the most pleasant of ways. Today, he looked at me somewhat vacantly, as if trying to place me, then brightened up a bit as I brought out the music therapy gear.

Usually it takes him at least half an hour to connect with the music, but today he responded right away, danced around (well, not danced, exactly. It was more like wiggling and shuffling), smiled. And he held me tenderly as we swayed to the music, he smiled at me, he seemed...almost happy. He flirted shyly. He put his arms around me lightly, hugged me closely. I got the feeling he thought we were on a date. And he liked me a lot.

He kissed me sweetly, stroked my arms, touched my cheek softly, gazed at me like a lovesick teenager. And then he pulled away ever so slightly, a half-smile on his lips as he looked into my eyes.

"Are you afraid?" he asked tentatively, quietly. What's this? He's wooing me, trying to put me at ease? Wait. He's talking to me!

"No," I answered, "Are you?"

"No," he responded softly.

I'm glad. I'm glad he's not afraid. I'm glad he still wants to be close to me, to embrace me. I'm glad for every window into his thoughts, every word he speaks.

"I love you," I whispered.

"You do?" His expression oozed relief and happiness and surprise and wonderment.

Yes, my darling. I love you. I love you beyond reason. More than I could possibly have imagined. You are my man, the love of my life, the only one for me. Why you chose today to have these brief moments of clarity, of normalcy, I don't know. But I'm grateful to have spent them with you.

You're the One

August 30, 2018

It was music therapy time once again, and we were slowly meandering around the courtyard, hand in hand, he with the headphones and I with the ear buds. He stopped, turned, and looked at me. I smiled up at him, our faces close together. His face lit up with a mix of recognition and excitement and tenderness, briefly, his beautiful eyes clear and looking right into mine, "You're the one! The one...," and his gaze drifted as his words faded away.

What was he going to say before he forgot what he was saying? I tried to fill in the blanks:  Am I simply the one who comes to see him, holds his hand, and spends time with him? The one who smiles and laughs and sings and dances? Or am I "the one" who spent a lifetime at his side, loving him and supporting him through thick and thin? The one who's lost without him and whose heart longs for him? The one who's so encouraged whenever there's any connection at all? The one who means more to him than anyone else in the world? The one he loves? That one? Me?

Generally speaking, I assume that he knows who I am at least some of the time. But on this occasion, I didn't have to assume anything. I knew. I knew that he knew me, even if was for a brief moment.

And as I sit here telling you about it, my heart leaps once again. The fact that he was able to string meaningful, relevant words together is in and of itself a minor miracle. But the fact that they were these particular words of recognition took my breath away and made my spirit soar.

Even at this late stage of Alzheimer's, we are continuing to make memories. I am, anyhow. Each one of these special moments is a gift for me to treasure. He knew me. And I'm "the one."

UC Davis ADNI Update

September 11, 2018

Today was the scheduled update survey for the ADNI study that we've been participating in pretty much since diagnosis. At first, the survey was done more regularly and in person with both of us in attendance, then it transitioned to longer intervals, then it became a phone interview.

First, the psychologist called to ask a lot of questions having to do with my husband's state of mind, moods, behaviors, and so on. I found it interesting that most of them would have been really relevant last year or the year before or even the year before that. But he seems to be past most of the issues she was bringing up at this point. It's sobering. Still, I think my responses were helpful, at least. She also asked questions about my well being, which I appreciated. It's important to track the patient, but it's also important to track how the patient's illness is affecting the caregiver.

Then, the research assistant called with the actual survey questions which, in my current state of mind, were laugh out loud hilarious to me:  Is your husband having trouble with his memory? Compared to 10 years ago, how is he at writing checks and balancing the checkbook? Can he remember a short shopping list? Can he remember a conversation a couple of days after having it? How is his driving? Is he able to read a map and find his way to a new destination? How is he at planning a project, preparing for it, and executing it? Regarding household chores, is he able to vacuum, do laundry, fold clothes? Lady, he can't put his shoes on or dress himself!

There was a lot more, but I'm sure you get the picture. These are the same questions that are asked every couple of years, and I think what they are doing is updating their database to track the course of the disease. I understand that. The only way they can track things is by recording your answer to the same survey questions over and over; however, it seems as though they could add a new component that would clarify the end stage time frame for their study, since the questions they're asking only highlight the dramatic difference between then and now. But what do I know? Maybe this survey is actually doing that, somehow.

Then. And now. Wow. Did I say the difference is dramatic? It's more than dramatic. It's breathtaking. Heart stopping. So, yes, this survey is actually doing that, somehow. For me, anyway.

Alone

It hit me hard this weekend, as I wandered aimlessly and procrastinated halfheartedly, accomplishing nothing under a sad, dark cloud of impending doom, that there's a really good chance that soon -- maybe not next year or the year after, but soon -- I'm going to be alone, partnerless, adrift in a sea of grief, bobbing up and down as wave after wave knocks me about mercilessly. Permanently.

And what troubles me about this is not that I'm going to be getting older and older, but that I'm going to be getting older and older by myself instead of with my man to hold my hand and look into my eyes and tell me everything is going to be okay. My mom once told me that what she missed most as a widow was hugs from her husband. I think I understand that now, because you can get hugs all day long, but those aren't the same as one hug from the one you love.

I'm going to spend the rest of my mortal life navigating stormy waters on my own instead of with my man to share thoughts and ideas with, to make plans with, to solve problems with. Family and close friends will of course be there for me, and that's wonderful and helpful and encouraging and good, but they're busy with their own lives. Though they will do their best to fill the chasm, it won't be the same as two people working together as one, reaching decisions about the future together as one, and moving forward with life together as one.

Couples won't invite me to do things with them any more. Actually, they already don't. In social circles, I am and will be the square peg in the corner, that awkward reminder of what awaits every couple, sooner or later. Nobody wants that around!

No. I'll be alone. All alone. Probably.

I'm reminded of that Brenda Lee song, "All Alone Am I":  "All alone am I ever since your goodbye. All alone, with just the beat of my heart. People all around, but I don't hear a sound. Just the lonely beating of my heart."

That's how I felt today as I walked along the waterfront. It used to be a favorite pastime, walking for a while, sitting on one of the park benches to eat a cupcake or take a picture, meandering to a coffee shop or back to the car; now it's just a reminder. Tick tock. Tick tock.

But God! God is a husband to the husbandless and a father to the fatherless. He will sustain me, guide me, comfort me. He will look out for me. He has been, is, and will be my ever present help in time of trouble. He will never leave me, nor will he ever forsake me. He is my refuge, my strength. He is faithful. He keeps His promises. In Him, all things are possible.

You see? Just as I was sinking in the mire of self-pity and despair, He rescued me and reminded me that there's nothing today or tomorrow or the day after can bring that the two of us can't handle. Together. He's got my back. And I am so grateful!

Suicide Watch

One of the things my husband's doctors asked me to watch for in the beginning was signs of severe depression or despair. Self-harm is a very real possibility with Alzheimer's (and probably with other terminal illnesses, too). There's really no hope for recovery from Alzheimer's (yet), so it isn't hard to imagine a person wanting to avoid taking his or her family down this long, bumpy, one-way road. It also isn't hard to imagine a caregiver wanting to end his or her own ordeal. Trust me on that one!

No doubt, doctors have more than a little experience with despair in their patients who have been diagnosed with horrible diseases. So they wanted me to have a conversation with my husband, probably assuming he would be more likely to share any deep emotions with me than with them. Not quite knowing how to broach the subject, I just blurted it out one day, a long time ago. He didn't seem particularly morose to me, but I wanted to give him a chance to talk to me if he needed to. The conversation went something like this:

"Harry, do you ever feel depressed or hopeless or anything like that?" I stammered and stumbled. I have a tendency to get "foot-in-mouth disease" when I don't quite know what to say and the subject is uncomfortable.

"No," he responded, "Why?"

"Well, the doctors said it isn't unusual for people with Alzheimer's to be depressed about it, and some people think about hurting themselves. The doctors thought it would be a good idea for me to talk to you about that."

"Okay."

"So, I want to make sure you know that it's okay for you to talk to me about anything that's bothering you."

"Okay."

"I want to know that if you ever thought of hurting yourself, you would know that you can talk to me about it. I don't want you to hurt yourself. I'm here for you."

"Hurt myself?!" It was as though he suddenly realized what the conversation was about, and he was startled and incredulous. "Why would I hurt myself? I would NEVER do that. I want to live!"

"I want to live" is a sentiment he expressed on more than one occasion after being diagnosed. Perhaps part of the reason for his outlook was that he eagerly volunteered early on to take part in research studies at U. C. Davis. It was something that he and I did together (and continue to do) as a team, and it gave purpose and meaning (albeit altruistic) and hope to life with Alzheimer's.

He seemed to enjoy telling people that he was a "guinea pig," even though he wasn't in any drug studies. We anticipated, of course, that his participation in ADNI and other research would help others down the road. And we also hoped we would learn of a promising study that would end up being a cure. That hasn't happened. Yet. Even if it did, it would probably be too late to help him at this point. It's hard to imagine anything short of a major creative miracle restoring all that has been stolen by this disease.

I don't mean to imply that participation in research, going to counseling, having interventions, being blessed with a happy-clappy caregiver, or a myriad of other things would prevent someone's untimely death by his or her hand. We all know better. I'm sure there are plenty of folks who have attempted suicide in spite of having tried everything. But I'm awfully glad my husband wasn't one of them, because while this journey has been and continues to be difficult, there have been many tender moments along the way for us to share. And they are still happening, even now. It seems strange to say so, but it's true. Life may be hard, but it's worth living. Don't give up.

For more information about dementia and suicide, there are many articles available on the internet. Here's one that's easy to understand, lists risk factors, and gives suggestions about how to respond when someone with dementia talks about suicide. 

National Suicide Prevention Lifeline (free, confidential, available 24/7). Don't suffer in silence. Please reach out. Call 1-800-273-8255.

A Penny for Your Thoughts

Alrighty, then.

A friend asked me a question the other day. She was curious about what I thought might be going through my husband's mind. What might he be thinking? Believe me, I've asked that question  ("What were you THINKING?!") a number of times over the years! But let's not go there.

Seriously, though, what do I think goes through his mind? That is actually a great question, and I wish I could answer it. Can we know what someone is thinking without the benefit of input from that person? We watch what a person does or listen to what a person says, and then we make assumptions about thoughts based on those actions or words or our past experiences with the person.

Wearing his pj's under his
street clothes.
August 2017

What is going through a person's mind when he apparently thinks it's perfectly normal to wear a couple of ball caps over a wide-brimmed hat or a t-shirt shirt over a buttoned shirt or socks over boots or underwear over outerwear? (Also see:  Your Mother Dresses You Funny) How does one decide it would be a great idea to pour a cup of tea into the pencil holder or to try to eat crayons (or hearing aids or iPod ear buds) or to drop a handful of coins into the pitcher of ice water or to scribble on the computer screen? Or to pee in the corner? He couldn't explain these things to me when they happened months and months ago ("Honey, why are you doing that?!" received a vacant stare). He's less verbal now than he was then, so I've got to think that what goes through his mind is pretty basic. But who knows? It might actually be complicated.

He holds my hand tightly and smiles at me and gazes at me intently. But I wish he could talk to me. I would love to have a meaningful conversation with him. Is he in pain? Is he often frightened and confused, or is he now simply living in the moment without a clue of the past or a hint of the future? I don't know, but at least I don't have any reason to think he is living in a state of fear. I hope not, anyway.

He seems less anxious and more at peace these days, except when he is being bathed or changed (he must think he is being attacked and is trying to protect himself, then promptly seems to forget all about it when the ordeal is over). He is "at home" in a place where folks understand about Alzheimer's behavior and how to handle it. It's the next best thing to having him here with me. I did the best I could for as long as I could and probably longer than I should have, and I am starting to be able to accept that others can take better care of him now than I would be able to.

It makes me feel good to know that, so far, he seems to be in the right place for him. It also makes me very sad for both of us. This is not what retirement was supposed to look like.


This blog is about our journey, not anyone else's. If there's something you're wondering about as you read my entries, please do ask questions. Part of the reason I'm journaling our journey is to increase awareness and understanding of Alzheimer's. 

Music Therapy

As I mentioned in Music Is Magic a few days ago, my husband has always loved music. While he was still at home, we played music all the time. There's generally music playing at his place, but it's geared more towards folks who are a bit older than he is. He still responds to it, of course, but it isn't the music of his youth, his heart, his falling-in-love times. It isn't the soundtrack of his life. We enjoy the music our parents played, and it might even remind us of happy childhood times. But it isn't our music, it's theirs.

I've struggled with ways to play his music for him without disturbing the other residents. His sister suggested that I take his iPod to him and leave it with him. While that's a wonderful thought and would be terrific under different circumstances, he no longer knows how to operate it. To ask the already taxed staff to keep track of the thing, turn it on and off for him, keep him from breaking his teeth while attempting to eat the earbuds, keep it charged, and prevent it from being broken or lost would just be too much to ask. His glasses have been missing for over a month and are nowhere to be found, so I'm thinking the same thing would happen to the iPod.

At any rate, as I previously mentioned, his iPod is still loaded up with the eclectic musical choices he selected years ago. I landed on a brilliant plan for his music therapy:  I would see if I could purchase a splitter so that two sets of earbuds could be used at the same time, enabling both of us to share the music experience together without bothering everyone else and allowing me to hear what he hears so I can respond engagingly with clapping, dance steps, or just nodding my head or tapping my foot to the beat. Then I thought about the earbuds and how appetizing he seemed to think they were, so I decided to see if I could also find some regular, lightweight headphones for him to use instead. He has a lot more experience with headphones than earbuds, and so I thought he might not be tempted to see how they taste. I was thrilled to find just what I needed at the first place I stopped.

Responding to Led Zeppelin

Today was our first attempt at this method of sharing music, and it went very well indeed. The new headphones fit his head comfortably, and the earbuds didn't fall out of my ears too often. I was glad to learn which songs elicited the most response from him and was able to skip the songs that weren't appealing. I encouraged him to "dance" with me to some of our favorite tunes. He tapped his foot at times, or whistled, or hummed. And then the most fantastic thing happened. The first few notes of Led Zeppelin's "Whole Lotta Love" instantly brightened his face with a beautiful smile as he looked at me and said, "Yeah!" Clearly, this was not "rest home" music. But he responded to it, and that's what matters to me.

I want him to be able to get some enjoyment out of life if at all possible, and I'm thrilled that this experiment seems successful so far. Like so many of the things I've tried in the past, it might only work for a couple of weeks. But that's okay. It'll be a couple of weeks during which I can drive home from his place with a smile on my face and a song in my heart.

The Fear Factor

"Did he ever voice that he was scared after getting diagnosed?" inquired a friend. I had asked people to pepper me with questions and suggestions about what they'd like me to cover in this blog. Surprisingly, the answer to that question is no. When he was told by the doctor that there wasn't a cure, he did say he didn't want to die; but, he was reassured to know that it wouldn't happen any time soon (it hasn't) and seemed satisfied with that.

October 2010
Six months post-diagnosis

In a strange way, he actually appeared relieved to know that there was a physical reason and a name for what was happening to him. It was as though he did not grasp the severity of the situation. I was in shock, and he was smiling. Where most people might have wanted to keep this kind of diagnosis under wraps for a time, he went around telling folks about it. And so our friends and family have known all along, almost as long as we ourselves have known.

Even though my father had suffered from dementia, perhaps the reality of what we would be facing together escaped my husband in those early days. We lived quite a distance away from my parents, and a weekend trip every month or so didn't expose my husband fully to what my mom and dad were going through. My mom was forthcoming in phone calls to me, so I had a better idea. And so perhaps my husband was blissfully unaware of the ravages the disease would have and the toll it would take. After all, my dad had been an old man. You might expect an old man to become weak and frail and forgetful. My husband was still young and strong and otherwise healthy.

Yesterday
Responding to music

As time went on and the disease progressed, he did not appear to be aware of his diminishing capacity; rather, he was frustrated with others. Perhaps he thought he was just fine and everyone else had a problem. Over the years, he did restate his desire not to die on a number of occasions (but not lately). Of course I always reassured him and told him he was going to be around for years and years (and he has).

I'm sure I've been much more fearful and anxious than he has been. There are a lot of things to be scared and anxious about, none of which are on his radar now. I consider that to be a blessing for him. What they say about this disease appears to be true:  It's harder on the family than it is on the person who has it.

But perhaps that's the case for every terminal illness, long or short. It's very difficult to watch your loved one leaving you, no matter what the cause or how it's happening. It's painful. And frightening. I'm told I will probably feel relieved "when it's over." But I doubt it.


This blog is about our journey, not anyone else's. If there's something you're wondering about as you read my entries, please do ask questions. Part of the reason I'm journaling our journey is to increase awareness and understanding of Alzheimer's. 

Music Is Magic

Music has a way of reaching past the Alzheimer's and firing up, albeit briefly, a person's spirit. According to the Mayo Clinic, "Research suggests that listening to or singing songs can provide emotional and behavioral benefits for people with Alzheimer's disease and other types of dementia. Musical memories are often preserved in Alzheimer's disease because key brain areas linked to musical memory are relatively undamaged by the disease." I don't know about all that, necessarily, but someone told me to think of it as being like riding a bike. You never really forget how to ride. It's in your muscle memory.

Enjoying that tune. 

My husband has always loved music. Every genre except rap, that is. Classical, gospel, country, rock, blues, bluegrass, jazz, and soul are all happily and generously represented in his considerable collection. He could "name that tune" in three notes or less and loved seeing and hearing his favorite artists "live" in concert. He frequently watched televised performances or popped in DVD's of bands famous and obscure.

So when I heard there was going to be live entertainment at the facility this afternoon, I made it a point to enthusiastically encourage him to "go to the concert" with me. This was not going to be a typical afternoon visit with naps interspersed with "earbud" music from the iPod I bring with me that's loaded with tunes typical of his eclectic taste.

The singing duo was mildly reminiscent of SNL's Marty & Bobbi Culp, but that didn't matter. Their song selections were standards spanning the decades. The show tunes, classic rock, and jazzy numbers were familiar and pleasing. It took my husband a while, but his eyes brightened and he seemed to genuinely enjoy the music, nodding to the beat, clapping his hands (astounding!), even dancing  (swaying to the music) with me and smiling as he held me in his arms. Dear reader, you can imagine how this made my heart glad!

Groovin'...

This is why I say that music is magic. It's miraculous. It reaches down deep in your soul, pulling out memories and associated feelings that may have been long forgotten. It transports you to far-away places and long-ago times. It elicits a powerful and positive response from people whose emotions may generally manifest in a thousand inappropriate ways and whose treasured memories and pleasing personalities are buried under layers of increasing confusion and disorientation.

It is heartwarming. And heartbreaking.

And look! I captured a smile.

Caregiver Stress Syndrome

"Everything will be better after you place him," they said. But it isn't as though the stress and trauma and worry have abated. Not one bit. It isn't as though I put my head down on the pillow and fall asleep for 8 hours. It isn't as though I wake up refreshed and relaxed. Far from it. Everything is not, in fact, better. Not at all.

I live in dread of the phone ringing early in the morning as it did last Saturday, telling me my husband was ambulanced to the nearest emergency room because he couldn't breathe. I go to sleep and wake up two hours later, drenched in nervous perspiration, feeling my heart beating its way right out of my chest, having another panic attack. If I do happen to sleep a bit longer -- say, for four hours -- I have disturbing dreams that prevent me from dozing off again.

There are an embarrassing number of things on my to-do list that have been there for months. But I either feel too exhausted to think of doing any of them, or I just don't care. And then I become overwhelmed at the long list of items waiting for my attention. A simple phone call becomes an ordeal to be anguished over for days before the receiver is lifted and the number dialed. Any decision to be made, no matter how simple, might as well be a climb up Mt. Everest. Every challenge must be ruminated over for days, lest the wrong decision be reached. And so analysis paralysis sets in, preventing any decision's being made at all.

The irony of all this is that I am not a shrinking violet, I am not a person who can't face things head-on, and I am not a wimp. Usually. But the ongoing, unrelenting, daily trauma of this situation is wearing me down in spite of my best efforts to enlist support, talk out my feelings, deal with my emotions, and pray for guidance from the One Who can help me best. Sometimes, the skies are brass, the clouds are thick, and the rain pours down unabated.

You'd think that having once hit the wall, that would be that. I didn't realize I would be slammed against the wall again and again, over and over, a figurative punching bag for every emotion passing by. There's nothing "post" about this daily, ongoing, never-ending tension.

Caregivers, does this sound familiar? Please do yourself a favor. Talk to a professional. That's what I'm going to do tomorrow.*

*Update:  I did it. It was worth it. Do it. Do it sooner than I did.

Sleeping Beauty

Dearest,

Today, you slept in a recliner in the television watching area through my entire visit. I tried to coax you awake with soft words and kisses, but you only pushed me away and went back to sleep.

I guess you had been up all night having an adventure, and I'm so glad you are now in a place (unlike the other three places) where the staff understands that this is a normal behavior for you and others like you. And it's okay with them. So they let you sleep if you want to, and wake up when you want to, and wander around if you want to, and eat when you are ready to. I am so grateful, and they have been wonderful so far.

But I am still holding my breath, waiting for the other shoe to drop. I really, really hope it doesn't, for your sake as well as mine. Getting used to new surroundings is difficult, and I don't think I can take one more thing. Seriously. As each day goes by, I realize more and more just how worn out I have become. Just how much the stress and worry and sleeplessness have affected my body. And my mind.

So, after a long while sitting next to you and watching you snooze, I got the lap quilt you were given at the American Legion as a thank-you gift for serving your country. I wrapped it around you to keep you warm, because your skin felt very cool in the air conditioned room. I tucked you in gently, waited by the door until a caregiver could come by to open it for me, looked back one last time to see if you were still sleeping, and left.

Until our next visit, then, my darling. Whether you are awake or asleep, I'll be there.

Tender kisses,
Me

Me and My Shadow

Tenderly touching.

We walked in the courtyard slowly, as we often do, hand-in-hand. Tender touch. It made me happy, and he seemed to like it as well. This day, he had greeted me, almost, and danced a few cheerful steps with me. He was having a good day.

We turned down the path, the sun at our backs, and suddenly he looked down and came to a screeching halt. He pointed to the ground. I looked. It was my shadow. My shadow was freaking him out. Did he think it was a dark, featureless being rising from the bowels of the earth?

"It's my shadow, honey," I explained, demonstrating how it moved when I moved and pointing out that he had one, too. It was right next to mine, but the angle made mine rather tall and his much shorter. Just the opposite of how things really were. He shifted his weight tentatively, puzzled, observing the moving shapes on the smooth cement.

Satisfied, or having lost interest, or not remembering what we were looking at and why, he lifted his head and walked on with me at his side, hand-in-hand. Tenderly touching. I hoped, somehow, he felt happy, too.

Tears on My Pillow

My Dearest,

Today when I greeted you with a big smile and a hug, you hugged me back. And then you chuckled as you wrapped your arm around me and pulled me tightly to your side. Did you know me? Were you responding to me, or were you simply responding to a friendly face and physical closeness?

When I leave, do you miss me? I hope not! I hope that by the time I walk out the door, you've forgotten all about me and moved on to whatever is next in your day. Because it tears me up to think there's even the possibility that you might wonder where I've gone off to and when I'll be back. Please don't do that.

I can't imagine what it's like inside your head, because you can't tell me what you're thinking or feeling. You were acting as though something might be causing you pain, but you couldn't tell me what or show me where. So I asked the Med Tech to keep an eye on you to see if he could figure out what might be bothering you, and he said he would. Did he? I hope so. I have to trust that he did, and it's gut-wrenching to have to trust others that way.

So tonight as I was praying for you and for those who take care of you, I cried. I cried because I can't help you. I cried because I can't take care of you myself the way you deserve to be taken care of. I cried because you aren't here with me, and I don't know how to be me without you.

I miss you. I miss you enough for both of us. Please don't be missing me, my love. I'll be back before you know it. I hope.

Desperate for you,
Me

Walk the Line

Part of the Courtyard

The courtyard at the care facility is large and meandering. There are plantings to see and railings to touch and murals to cipher. There are park benches and outdoor living rooms and tables with umbrellas to sit at. The walkway is wide and made of cement rather than stepping stones. I'm sure that prevents any number of trip and fall mishaps for the residents.

My husband and I were taking a little walk in the courtyard, and suddenly we came to an area where two sections of cement met with a metal seam. He stopped dead in his tracks, looking down, hesitating. Because people with Alzheimer's don't necessarily perceive these things the way most people would -- that it's just a seam in the cement and not a drop-off point posing a danger to life and limb -- I knew that he wasn't going to step over the line without encouragement.

"It's okay, honey. You'll be fine. Watch me," I said, holding his hand, stepping over the line and adding, "See? Come with me."

He seemed to ponder his options a moment or two, then raised his right leg high as he tentatively stepped up and over the perceived barrier. The left leg followed with a little encouragement, and off we went. Slowly.

It isn't the first time he's seen a cement seam or crack as a potential threat (at least, I think that's what is going on, since he doesn't verbalize his concern). He used to pause at cracks and seams for a split second sometimes when we were walking on the sidewalks downtown, in our previous life. He also stopped at the curbs when entering or exiting crosswalks, hesitantly stepping sideways either down or up, feeling the distance carefully to avoid casually stepping into a chasm or failing to lift his leg enough to clear the apparently very tall curbs.

In a strange way, it's similar to walking with a small child just beginning to explore the world, experiencing new things. 'Here we are at a crosswalk, darling. Stop and look both ways! Step off the curb carefully. It's very far, isn't it?' and at the other side, 'Up you go! That's right. Oops, you need to lift your foot very high, don't you?' Except that with the small child, it's a happy thing that means growth and development; whereas, with my husband, it's a melancholy thing that means exactly the opposite.

You Don't Know Me

You're glad to see me
Most of the time,
But your eyes tell me
You don't know me.
Usually,
But not always.

You greet me the way
You would greet anyone
Stopping by:
A hint of a smile.
Usually,
But not always.

You allow me to
Hold your hand
Gently
And to stroke your arm
Softly
And to kiss your cheek
Tenderly.
Usually,
But not always.

You walk with me
In the courtyard
As I prattle on,
But you're
Not really engaging,
Not really noticing.
Usually,
But not always.

You seem distracted.
Your attention wanders.
You answer my questions
Monosyllabically.
Sometimes,
If at all.

And when I leave
With a "see you soon,"
You don't seem to care.
I'm just that woman
Who looks at you
Adoringly
And smiles at you
Brightly
With sadness in her eyes.

Your gaze doesn't follow me
To the door.
You're already elsewhere.
You don't see me
Hanging my head,
Blinking back tears
As I hurry away.

I'm just a ghost
Of your past life,
So you don't know me,
Or you can't place me.
Usually.
But I know you, my love.

Waiting for the Other Shoe to Drop

The phone rang just now. Caller ID indicated that it was the memory care facility where my husband is living. I only returned from seeing him a few hours ago. It was a good visit, and he was doing well. What now?

With great trepidation, I reached for the phone, a sinking feeling in the pit of my stomach. "It's Friday night," I thought, "It's either an emergency, or they've decided not to keep him. Again. Either way, please, no!" [For more about all the moves, see "The Right Place."]

But it wasn't anything like that. It was just a question about medication. What a relief! Yet here I am, traumatized and panicked. Again. I feel as though I'm standing on the edge of a precipice. My hands are shaking, my breathing is shallow and rapid, my heart is pounding, I'm in a cold sweat, and I'm about to cry. I tell myself to breathe in slowly, breathe out slowly, relax. But I can't.

It's hard to be calm when you're waiting for the other shoe to drop.

Joined at the Heart

It's a funny thing. Throughout most of our 48+ years of married life, my husband and I held each other more or less loosely. That is to say, he had his favorite things to do that I didn't necessarily enjoy but tolerated, I had my favorite things to do that he wasn't even remotely interested in doing with me, and then there were the things we liked to do together. It worked really well. We weren't "joined at the hip," and we liked it that way. And suddenly he got this illness. Well, it seemed sudden, anyway, though I'm sure it actually wasn't.

As time went on, I couldn't be out of his sight for five minutes without causing him distress. He followed me around everywhere, even to the bathroom. It was like a noose tightening around me sometimes, and it was hard to breathe. It was difficult to accept that this strong, decisive, pioneering man now depended on me for absolutely everything. It was a heavy responsibility, and it still is.

Gradually, we became inseparable as I cared for all his needs of daily living, maneuvered social situations alongside him, ensured that his quality of life was as close to what he was used to as possible, took him for drives to calm him, everything. Everywhere I went, he went. Everywhere he went, I went. We held hands like a sweet, little, old couple. My feelings for him became more and more tender as time passed and compassion overcame fear. We were joined at the heart, but Alzheimer's was viciously separating us.

Many times, I have been teary-eyed at the unfairness of it all, the frustration of it all, the pressure of it all, the stress and tension of it all. The fear. The fear of it all. The pain of realizing he is slowly, inexorably leaving me is excruciating. Some days, I really don't know how I'm going to go on.

Alzheimer's is a cruel, relentless disease.

The Right Place

A few days after I wrote "Time Has Come" and "I Live Here," we were asked by the memory care facility to move my husband to a different location immediately. Based on what I had seen, I had already decided this would be a good idea anyhow. The staff just didn't seem adequately prepared to properly care for my husband's level of Alzheimer's, he was swiftly going downhill, they were not able to "control" him, and they wanted to start right out increasing medications or substituting others. It made me uncomfortable. Listen to your gut.

As I happened to be out of town (fabulous timing), our kids pitched in with the help of the placement agency mentioned in "Time Has Come," and my husband had been placed in a board and care closer to home in a matter of hours. It wasn't the best situation, but it was available, close to home, and quick. In these parts, availability is at a premium. Everything seemed to be going well except that the doctor was less than responsive to the owner's requests for medication approvals, which was of course frustrating for everyone. And then another resident's husband became upset that my husband and his wife were holding hands (it happens). He's the jealous type, I guess, and he confronted my husband. This is something you don't want to do to a person with advanced Alzheimer's. The person is confused, has no idea what the problem is, and feels threatened and attacked. None of that is good. Happily, no harm was done; however, the gentleman insisted that my husband be relocated.

And so my husband was moved to the owner's other board and care on the same court. At first, it seemed to be a better situation. But my husband reportedly became very resistant to personal care there, batting away the caregivers' hands, trying to kick them, and so on. Once again, they were apparently unprepared to handle this type of situation.

My husband collapsed the day before his birthday and had to be rushed to the hospital. His blood pressure was 55/40, he had cellulitis, and he was septic. You can read all about that experience in "The First Infection."

When he was released from the hospital, probably too soon, he required extra assistance. And so I went twice a day to feed him and make sure he had taken his medications, as he was spitting them out. He regained a bit of strength but became even more combative. Medications were increased but made no difference. In a board and care, there isn't a lot of room to roam, and it's best if a person is docile and likes to watch television. It's also best if a person doesn't have to be dragged out of bed, manhandled into the shower room, restrained while clothing is basically ripped off, and forcibly held in place for a scrubdown by four people. I'm pretty sure I would be kicking and scratching and screaming under those conditions, too. But it's what they felt they had to do to keep him clean. Once again, we were asked to find a new place for him. I suggested that the staff be trained in "Bathing Without a Battle," but of course it was already too late to try it on my husband. Not there, anyway.

Back to the agency we went. Two larger facilities agreed to accept him (most small facilities are not prepared to accept someone who's been labeled "combative"), and off we went to tour the places. I debated with myself all night because of a lot of factors (including the steep increase in cost, let's be real). But the less expensive facility reminded me too much of the first place we'd tried, and I decided to listen to my gut. So I chose the second option. His fourth location in less than three months. That's a lot of adjusting for anybody, but especially for someone with Alzheimer's.

Room to roam. This area provides
a safe space (note railing for stability)
for walking around. And around..

He just moved in yesterday, so it remains to be seen what the outcome will be. But, at least for now, the folks appear to use a different approach that is more conducive to a peaceful situation. There's plenty of room to roam. There's even room designed for roaming. He appeared fairly content when I went to see him today. I hope he'll be safe. Especially from the woman who's decided she's his new girlfriend. Already. Well, who could blame her?

The First Infection

Infections that begin in warm, damp places spread like wildfire. Just ask any parent who has changed a baby's diaper only to discover fiery, angry redness where a happy, healthy bottom had been just an hour before. What starts out as a rash or a mild urinary tract infection in a person who is incontinent and spends a lot of time sitting can suddenly become a life threatening event.

Last Saturday, I had just returned from shopping for birthday celebration supplies for my husband's Big 7-0 the next day. I was getting ready to make my daily visit to him* when I got a phone call from the facility letting me know that he had collapsed, his blood pressure was dangerously low, and he was being taken to the nearest hospital via ambulance. I rushed to his side.

I haven't spent a lot of time in emergency rooms, thankfully. The doctors and nurses and techs and aides were rushing to and fro, and the whole experience quite took my breath away, to be frank. I was in shock, and I was being asked to make on-the-spot decisions about my husband's care that I just wasn't emotionally ready for.

Noting his DNR (do not resuscitate) status, the staff bombarded me with questions. Did I want them to continue pumping fluids into him to bring his blood pressure up? Was it okay if a course of antibiotics was started for the sepsis? If he needed help breathing, was it okay to administer oxygen? If he "crashed," what did I want done? My head was spinning. What to do? Treat? Not treat?

We had talked about this. We had talked about the fact that he doesn't want heroic action taken, doesn't want to be intubated, doesn't want to be resuscitated. We had talked about at what point to decide whether or not to treat illnesses and infections. When to "let nature take its course." It's important to have these discussions sooner rather than later, and we did that. I'm okay with the DNR and the DNI (do not intubate). But I just couldn't bring myself to forego treatment for an infection. Not this one, anyway. Weak and shaky, he returned to the facility today. He had given the hospital staff a run for their money, but he had come through it.
.
Did I do the wrong thing? I can't tell you. All I can say is that I wasn't ready to make a monumental decision that I might regret for the rest of my life. We'll see how it goes from here. From past experiences of others, I know that the first infection like this is a milestone of sorts. It will no doubt happen again, and probably sooner rather than later. I'm hoping for later. I need time to think.

*What started as a respite stay at one place has become long-term placement at a third place. Long story. I'm working on some posts about this, but I thought it was important to go ahead and post this one instead of waiting. 

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 anything...anything...to 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.

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.

Cooking for One

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

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
Remembering
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
Alone

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?"

"Yes."

"Is the food good?"

"Yes."

"Do they treat you well?"

"Yes."

"Are they friendly?"

"Yes."

"What's your name?"

"Me."

"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.

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.

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.