First Anniversary

March 27, 2019

It's been one year since I drove my husband to a care facility in Napa for a one-month respite stay. I was scheduled to go on a short trip, and I really needed a period of rest. I had fully intended to take him home and hang in there at least a few months longer, much to the distress of my family and friends.

Little did I know how this respite stay would result in a precipitous downturn in his condition and permanent (so far) placement. Or perhaps that was about to happen anyway, and it's even possible that I just didn't recognize how much things had gone downhill. Sometimes, it's hard to see the forest for the trees. Or maybe it's more accurate to say you don't notice the temperature of the water in the pot going up bit by bit until it starts boiling.

Looking back, as breathtaking as the whole situation was at the time, I realize now it was the best decision for him and for me. It has taken a year for me to start getting any semblance of sleep pattern back, though sleep is still sketchy at times. I finally, just a couple of months ago and at the insistence of my children, started physical therapy for the injury to my arm that was exacerbated by repeated twists and pulls and yanks and pushes and grabs. This is apparently not an unusual injury for caregivers, especially those caring for dementia patients.

And so, though I miss him every day, even on the days when I spend hours and hours with him, I know I did the right thing.

But I still cry myself to sleep nearly every night.

Dock of the Bay

Because my husband responds to music, "official" music therapy has been added by the hospice provider. The young man visits various residents, strumming his guitar and singing the tunes of their era. He has a strong, clear voice, and his playing is very good, too. All the residents enjoy listening to him and singing along, so it benefits everyone, really.

Yesterday, I happened to be present when the musician came to sing and play for my husband. Previous sessions hadn't gone too well, which is surprising, so I was glad to be there to observe and make suggestions. My husband likes to get up suddenly and wander a bit, which made the therapist think he wasn't interested in the music. That's not true, of course, so I just suggested that when that happens, he could just be a troubadour and follow my husband around. It worked perfectly. The little egg-shaped shaker things, though, not so much. My husband secreted his away in his pocket, but I'm just as sneaky as he is and was able to retrieve it without conflict. Whew.

At one point, my husband had decided to sit down on the couch for a bit. I sat next to him, and the therapist began playing "Dock of the Bay." My husband was nodding his head and tapping his foot, making warbling attempts at singing along to this long-time favorite. Then came the last part of the song.

"Here comes the whistling part," I whispered in his ear, smiling.

And guess what happened next? As the therapist began whistling, my husband whistled along, too! He even trilled some of the "notes." This was so wholly unexpected, so delightful. Everyone in the room started clapping and cheering, "Way to go!"

I just cried. I think that's okay.

A Pat on the Back

The other day, one of the newer residents (I'll call him "Joe") at my husband's place was having a very difficult time. He was extremely agitated, wanting his wife to come get him, wanting to go home, threatening to take his own life, break things, steal booze and drink himself to death. Loudly. Desperately. It broke my heart.

Joe is usually a sweet, sweet man, though he's been known to toss his cane across the room in a moment of frustration. Sometimes, when he's disoriented, he sees me across the room, points at me, and says, "I know you!" He's conversational (obviously) and always greets me with a smile and a cheerful "Hello!" He can be found playing dominos and chatting away at a table with some of the more abled residents.

But he's having a time of it adjusting to being away from home, when he remembers he isn't home. And, of course, he desperately wants to be with his wife, at home, during those moments. He asks where she is, when she'll be back, gets tears in his eyes. Not everyone is as crazy as I am; most people place their loved one in a care facility at the start of aggressive agitation. I don't blame them, because it can be pretty scary. And dangerous.

Anyhow, Joe, my husband, and I were all in the "quiet" living room. Since I have a pretty good relationship with Joe and was feeling deep compassion, I went over to him as my husband sat on a nearby couch and softly "chatted him down from the ledge," as it were, with my hand gently on his shoulder the way I always do when speaking with him. As Joe began to calm down, my husband (who had by all appearances been slouching on the couch taking a nap in oblivion) suddenly stood up and walked slowly in our direction. He looked me right in the eye, gave me a half smile, and patted me on the shoulder encouragingly as he passed by.

Now, you can think whatever you like about the situation. Maybe he does this all the time with the caregivers. Maybe he didn't know who I was at all, but I do know it was an "atta girl." He was offering me support and telling me I was doing well. It was a gift, another precious moment.

His body and his mind might be failing him, but there is nothing wrong with his spirit.

Pins and Needles, Part Deux

Sometimes, an answer isn't an answer. It feels more like a question. My husband was weighed, and he appears to have lost a pound or two. On the face of it, according to what I've been told in the past, that's not-so-good news; however, the hospice nurse advised me to not be overly concerned. After all, she explained, the weigh-in method at the facility is something less than scientific, apparently.

In order to really track weight accurately, it should be checked at the same time of day, wearing the same clothing, having eaten the same amount of food and consumed the same amount of liquid, and having toileted. And sitting very still on the chair scale with your feet firmly on the footrests. There's really no way to do all of that consistently at a memory care facility.

He weighs about the same as he did at the January weigh-in, assuming that was accurate. Perhaps February's number showing a slight gain was off. Perhaps it wasn't. Maybe he has lost some, maybe not. So now we wait for next month's figure.

And then it'll be pins and needles, part three.

The Wanderer

I just found this post that I wrote on March 4, 2018, and apparently never uploaded to the blog. So, this is where we were a year ago, and this is his photo a year ago. He looked so healthy, didn't he? You can't tell a book by looking at its cover.

As you read this "poem," I'm sure you will get a sense of just how frazzled my nerves had become from the daily, hourly, minute-to-minute stress of caregiving alone. Perhaps I didn't post it for that very reason, but now my hope is that it might help someone else to realize the time has come to place a loved one in professional care:

Restless,
Pacing.
Up,
Down.
In,
Out.
Door is open!
Heat is on!
ARGH!

All afternoon,
Lunchtime
to
Dinnertime.
In,
Out.
In,
Out.

He's out the door!
Gate is open!
Oh, no!
In front yard,
Pacing.
Looking.
Pacing.
Looking up the hill,
Looking down the hill...

No!
Don't cross the street!
Come in,
It's cold!
Okay.
Come in,
It's cold!
Okay.

Nothing.

PLEASE come in;
PLEASE close the door.
PLEASE sit here
While I cook dinner.
PLEASE!
PLEASE!

Evening.
After dinner
until
Sleepy time.
Up,
Down.
Up,
Down.
Up,
Down.
Up,
Down.
Up,
Down.
Pacing.
Pacing.
Please, sit down.
PLEASE! My God!
Please help me...

Do you detect the exhaustion and desperation I was experiencing? I didn't remember the last time I hadn't slept with one eye open, if at all. I was badly in need of respite and had scheduled it. Little did I know that we were just weeks away from what turned out to be his permanent placement. It was time. Some might even say it was past time.

Pins and Needles

March 6, 2019

I've been on pins and needles for about a week, since the last visit with the hospice nurse. As I'm sure I've mentioned in previous posts, my husband has been receiving double meal portions for several months in an attempt to stabilize his weight. How he is even able to ingest that much food without being ill is a mystery. But the big question is:  Is he digesting it? The hospice nurse thinks perhaps not.

He did gain a few pounds back, but the facility nurse doesn't think that's continuing, either. If so, that would mean we have moved to yet another phase of this horrible disease. If a person can't keep weight on in spite of all the calories, that means the body isn't able to process the food completely. In one end, out the other. And that latter part now seems to be requiring medication to keep it going.

So. "Weighing in" takes place the first week of every month. This week. That will tell us where we are right now. And that's why I'm on pins and needles.

Stay tuned.

Baby, Baby

March 2, 2019


You were sleeping when I came to see you today. I waited. And waited. It was a sleepy kind of day, and you weren't the only resident snoozing. Finally, after an hour and a half, you opened your eyes and sat up. You didn't seem inclined to get up and out of bed, so I quickly put your headphones on and started the music before you could lie down again.

I sat next to you and waited and smiled and nodded my head to the beat. You finally started to do the same. I stood up in front of you, offering you my hands to help you get to your feet, but you resisted. So we went through the process again and again until, finally, success!

You stared past me as we walked, hand in hand, all over the facility to the different tunes on your iPod. You were mostly expressionless, with an occasional sort-of-smile. Not the one you use when you are in a good mood and having fun. The other one. The one that's a half-hearted or confused return of someone else's encouraging smile. The one that's an obligation, an automatic reaction, rather than a pleasure. That's okay. I know you aren't always going to recognize me or be thrilled to see me. I guess you are more familiar with the caregivers than with me now. After all, they are there all the time. I'm not.

You didn't say anything for hours. Nothing at all. Until Rod Stewart's "Baby Jane" was playing. You lit up, looked over at me, scrunched up your face, and sang, "Baby, baby, baby, baby..." And that was all it took to warm my heart today. I've always been a "low-maintenance" kind of girl, eh?

You kept wanting to sit down. Sometimes you headed for a couch or chair in the common area, and sometimes you headed to your room to sit on your bed. You seemed tired. I guess it was a tired kind of day. I was tired, too. Pretty soon, you got up from the couch where we were sitting and just walked away. I waited. You came back by and walked right past me without noticing that I was there at all.

I gathered my things and stepped in front of you, smiling, to give you a kiss goodbye. You stopped and looked at me, but you didn't see me. I kissed you, but you were somewhere else. That's how it is sometimes, and so it goes.

Happy Anniversary to Us

March 1, 2019

The two of us, 49 years ago.

Yesterday was our wedding anniversary. It's been 49 years since we nervously said, "I do!" It was a dark and stormy night, and a number of our guests were simply unable to make it to the church through the rain and the wind. The next morning was all beautiful sunshine, and you'd never have known about the previous evening's tempest. It's crazy how quickly all those years have gone by. What an adventure it has been for a couple of kids who had no idea what they were getting into but stuck it out anyhow through the good times and the bad times of life, the happy times and sad times. The healthy times and the not-so-healthy times. The sunshine and the storms.

Everyone at the facility and online wished us a happy anniversary. And it was. We listened to music and ate the cheesecake I had brought to share. We sat close together and held hands. I talked to him and smiled at him and gave him a kiss or two. Or three. He looked at me with puppy dog eyes of possible recognition once or twice. I tried to get a good picture of the two of us, but I haven't looked at them yet. For some reason, that's hard to do today.

Later, I met a couple of friends for Thursday Tacos. This has been my support group for years now, almost every Thursday night. We don't usually have tacos. But the name stuck, so we use it. They are ladies who understand love and loss and grief and survival. Sometimes there are more of us and sometimes fewer, but the comfort of knowing we are there for each other is extremely important to all of us. Life is a community thing, an outward thing. It isn't meant to be lived in solitude, inward. Not for me, anyway.

If you are a caregiver, I hope you have found a group for support. It doesn't have to be a big group, and they don't have to already be your friends. But they will become your friends as you share your journey together. It's a tie that binds hearts together. That's how it works.

Happy anniversary to us, my darling. You are still my prince, my favorite, my one true love, the only man for me. I love you to distraction and back.