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
Sunday, October 21, 2018
Friday, October 19, 2018
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.
"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.
Thursday, October 11, 2018
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.
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.
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| October, 2017 One Year Ago Looking perfectly healthy. Looks can be deceiving. |
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| 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. |
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| End of June, 2018 Just over 3 Months Ago Recovering from sepsis and adjusting to new surroundings. At his 4th place in 3 months. |
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| October 10, 2018 - Yesterday. Heartbreaking. |
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| Middle of July, 2018 |
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| Middle of September, 2018 |
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| October 10, 2018 - Yesterday His leg on the left, mine on the right. |
Thursday, October 4, 2018
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.
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.
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