February 12, 2019
A week ago today, my husband had two seizures in less than 12 hours. It was the first time, as far as we know, that he experienced more than one seizure in one day. Or even in one week. His medications were adjusted once again. There has been quite a bit of that, as everything is experimental at this point. The combination that's successful today might not be effective tomorrow.
The next day, he was somewhat lethargic and recovering from the event. He had bitten his tongue and cheek rather badly, so eating was uncomfortable. But he did eat and drink, so that's good.
The day after that, in the morning, I received a phone call from the hospice nurse. Usually when I receive a call from either the facility or the nurse in the morning, it isn't a good thing. So when I heard her voice, I was instantly -- and understandably -- apprehensive. But she wasn't calling to give me bad news. She was calling because she wanted me to know how surprisingly alert he was, how he had sat down next to her and smiled pleasantly, how responsive he was to her questions. She hoped he could "talk" to me on the phone, but he was unable to figure out how to navigate that. I heard him cheerfully say one or two words to her in the background, and it made me happy to hear his voice.
The previous time he had a seizure, in early January, he was also more alert once he had recovered from the event. For a day or two, anyhow. It's odd, and I have no explanation for it; but, I thought I'd mention it in case one of you dear readers can offer any insight.
So far, he seems to be supporting the change in medications very well. On another positive note, and there's no way to tell if it's because of the medications or if it's the progression of the disease, the staff members told me he isn't putting up as much of a fuss when it comes to personal care. We don't know if that's a passing thing or if it's the "new normal," but we'll take it!
Friday, February 15, 2019
He Said My Name
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| Paleo fudge brownies, paleo raspberry- filled sugar cookies, shortbread |
February 14, 2019
I took some special goodies I'd baked to the care facility today, along with a beautiful card I had chosen for my husband. Usually, I have to settle for a card that isn't too awful. I'm sure you know how it is! This one, though, perfectly expressed my feelings about our life together and our love for each other in spite of the uncertainty of our future. I couldn't have written it better myself. But this post isn't about the card or the cookies.
He was lying down on his bed when I got there, staring at the wall and not responding to me at all. I sat next to him and read the card out loud, and he almost smiled once or twice. I fed him a brownie and a raspberry-filled sandwich cookie (okay, maybe this post is about the card and the cookies, sort of), and then the music playing through his headphones began to perk him up. It always does, because music is magic.
The hospice chaplain had arranged to meet me there in order to share communion again, the three of us. By the time he arrived, my husband and I had "danced" into the common area, eaten some pretty fabulous chocolate-covered strawberries prepared by the staff, and were sitting in the dining room. I'm not always sure whether or not he knows who I am, but he's usually happy to hang out with me. Today, he seemed to really know me. He held my hand tightly, leaning towards me for kiss after kiss on the cheek. It was very touching and tender and heartwarming. And bittersweet.
As the chaplain came over to our table, I leaned in to my husband, saying his name to focus his attention on our guest. Staring straight ahead, he responded with my name. His name; my name. Just like that. It's the only word he spoke during the more than three hours I was there today. What a gift it was, though!
Happy Valentine's Day to me!
Thursday, January 24, 2019
You're My Girl
January 14, 2019
It's normal to feel a mixture of emotions when visiting a loved one in a care facility. You might experience guilt or grief or inadequacy. You might feel like a failure because you totally intended to keep your loved one at home until the bitter end, but then you discovered the truth in what others had been telling you for months or years. You can't do this part by yourself. This, my friends, is not an easy thing to accept.
As time goes on, you see that your loved one is comfortable in his or her new surroundings. You see that the caregivers are professional and know what to do in difficult circumstances. You see that they really do care, and they can accept your loved one as he or she now is without being tormented or burdened by memories of who he or she once was. And you see that you can spend time with your loved one that is "quality" even though there's very little about it that would seem like "quality" to other people.
When he's having a good day, hours with my husband seem like minutes. Sitting next to him, holding his hand, rubbing his back, running my fingers gently through his hair, smiling up at him, touching his cheek, and encouraging him as we listen to music together...the hands on the clock continue to move, but time stands still. Just for those moments, we are the only two people in the room.
Yesterday, we were enjoying one of those good days together. He slipped his arm around me comfortably as we sat together. Physical touch has always been important to us, as it is for most couples. It was the most natural thing in the world, really.
"You're my girl," he said so softly I almost didn't hear it.
It was a moment to cherish, a gift. There have been quite a few moments to cherish, it seems, and I am so grateful for the comfort and healing they bring to my heart. They are treasures that keep us bound together as tightly as we've ever been, even though we're apart.
It's normal to feel a mixture of emotions when visiting a loved one in a care facility. You might experience guilt or grief or inadequacy. You might feel like a failure because you totally intended to keep your loved one at home until the bitter end, but then you discovered the truth in what others had been telling you for months or years. You can't do this part by yourself. This, my friends, is not an easy thing to accept.
As time goes on, you see that your loved one is comfortable in his or her new surroundings. You see that the caregivers are professional and know what to do in difficult circumstances. You see that they really do care, and they can accept your loved one as he or she now is without being tormented or burdened by memories of who he or she once was. And you see that you can spend time with your loved one that is "quality" even though there's very little about it that would seem like "quality" to other people.
When he's having a good day, hours with my husband seem like minutes. Sitting next to him, holding his hand, rubbing his back, running my fingers gently through his hair, smiling up at him, touching his cheek, and encouraging him as we listen to music together...the hands on the clock continue to move, but time stands still. Just for those moments, we are the only two people in the room.
Yesterday, we were enjoying one of those good days together. He slipped his arm around me comfortably as we sat together. Physical touch has always been important to us, as it is for most couples. It was the most natural thing in the world, really.
"You're my girl," he said so softly I almost didn't hear it.
It was a moment to cherish, a gift. There have been quite a few moments to cherish, it seems, and I am so grateful for the comfort and healing they bring to my heart. They are treasures that keep us bound together as tightly as we've ever been, even though we're apart.
God Is Good
January 13, 2019
It goes without saying, doesn't it? But I will go ahead and declare it for those of you who might be wondering: Yes, I continue to ask God for my husband's healing and complete restoration. No, this does not mean I am "bargaining" or "in denial." It means I believe in the power of prayer. I believe in miracles. I believe that God is good, always good.
Do I believe that God is good, no matter what? Do I believe that even if my husband's healing doesn't come this side of Heaven and that God's answer is "no," God is still good? God still cares about us? Yes. A thousand times, yes!
Many of you have told me you are also praying for my husband (and for me). Don't stop! You have no idea how much this knowledge encourages me and strengthens me and holds me up.
This has been and continues to be a long, arduous journey. Your journeys are also long and arduous, though. So I hope you aren't refraining from sharing your concerns with me because you think I already have enough on my plate. We are supposed to be holding each other up. It isn't a one-way street. You have been there for me. For years. I want you to know that I'm here for you, too.
Blessings!
It goes without saying, doesn't it? But I will go ahead and declare it for those of you who might be wondering: Yes, I continue to ask God for my husband's healing and complete restoration. No, this does not mean I am "bargaining" or "in denial." It means I believe in the power of prayer. I believe in miracles. I believe that God is good, always good.
Do I believe that God is good, no matter what? Do I believe that even if my husband's healing doesn't come this side of Heaven and that God's answer is "no," God is still good? God still cares about us? Yes. A thousand times, yes!
Many of you have told me you are also praying for my husband (and for me). Don't stop! You have no idea how much this knowledge encourages me and strengthens me and holds me up.
This has been and continues to be a long, arduous journey. Your journeys are also long and arduous, though. So I hope you aren't refraining from sharing your concerns with me because you think I already have enough on my plate. We are supposed to be holding each other up. It isn't a one-way street. You have been there for me. For years. I want you to know that I'm here for you, too.
Blessings!
Sunday, January 13, 2019
The Will to Live
January 13, 2019
There are some things that are just basic instinct. For instance, a baby will latch onto anything near his or her mouth and start sucking with all the power of a shop vac. Just ask any new mom whose little one has latched onto the wrong spot! Opening your mouth when being fed, taking a bite, chewing, swallowing. Basic things that will eventually be forgotten should the disease follow its natural progression. But let's not go there right now. Here's what happened:
A couple of days ago, my husband came down with a high fever. Since he's basically non-verbal at this point, trying to determine the cause was an exercise in futility. At this stage, what you go for is comfort. Is the person eating, drinking, resting? Displaying any signs of pain such as facial grimacing, grunting, groaning, or perhaps placing his or her hand on a body part while displaying non-verbal signs of pain?
A nurse was dispatched from hospice to sit with my husband for an 8-hour shift. She (in this case) was charged with encouraging me and ensuring his comfort, monitoring his temperature and blood pressure, communicating with the hospice doctor regarding any needed medications, and taking care of any personal needs that might arise, such as changing his incontinence briefs. Since, on this particular day, he was bedridden due to illness, this involved encouraging him to turn onto his side so the briefs and bed pad could be removed and replaced, then his other side so the pad could be smoothed and the briefs secured. One of the facility's caregivers was called in to help.
Though the bed has railings, my husband was having none of this being rolled onto his side, close to the edge stuff. It was a battle royal as his fear-of-falling instinct took over. The nurse's calming words of reassurance had no effect. He flailed, pushed, and resisted rigidly for all he was worth, and his fear manifested in a remarkable spoken phrase. It surprised all of us: "I'm going to die!" There you have it. Perfect, momentary clarity. Even at this late stage of the disease, it wasn't just the possibility of falling that was giving him the strength to fight. It was the probability of being seriously injured in that fall. It was basic self-preservation. It was the amazing, instinctive, God-given will to live.
The fever has gone, and all is well. This time. I know the day is coming, months or years from now, when the outcome will be different. In the meantime, though, allow me to marvel once again at his strength and resilience and ability to make a come-back. My man is such a warrior!
There are some things that are just basic instinct. For instance, a baby will latch onto anything near his or her mouth and start sucking with all the power of a shop vac. Just ask any new mom whose little one has latched onto the wrong spot! Opening your mouth when being fed, taking a bite, chewing, swallowing. Basic things that will eventually be forgotten should the disease follow its natural progression. But let's not go there right now. Here's what happened:
A couple of days ago, my husband came down with a high fever. Since he's basically non-verbal at this point, trying to determine the cause was an exercise in futility. At this stage, what you go for is comfort. Is the person eating, drinking, resting? Displaying any signs of pain such as facial grimacing, grunting, groaning, or perhaps placing his or her hand on a body part while displaying non-verbal signs of pain?
A nurse was dispatched from hospice to sit with my husband for an 8-hour shift. She (in this case) was charged with encouraging me and ensuring his comfort, monitoring his temperature and blood pressure, communicating with the hospice doctor regarding any needed medications, and taking care of any personal needs that might arise, such as changing his incontinence briefs. Since, on this particular day, he was bedridden due to illness, this involved encouraging him to turn onto his side so the briefs and bed pad could be removed and replaced, then his other side so the pad could be smoothed and the briefs secured. One of the facility's caregivers was called in to help.
Though the bed has railings, my husband was having none of this being rolled onto his side, close to the edge stuff. It was a battle royal as his fear-of-falling instinct took over. The nurse's calming words of reassurance had no effect. He flailed, pushed, and resisted rigidly for all he was worth, and his fear manifested in a remarkable spoken phrase. It surprised all of us: "I'm going to die!" There you have it. Perfect, momentary clarity. Even at this late stage of the disease, it wasn't just the possibility of falling that was giving him the strength to fight. It was the probability of being seriously injured in that fall. It was basic self-preservation. It was the amazing, instinctive, God-given will to live.
The fever has gone, and all is well. This time. I know the day is coming, months or years from now, when the outcome will be different. In the meantime, though, allow me to marvel once again at his strength and resilience and ability to make a come-back. My man is such a warrior!
Wednesday, January 2, 2019
Seizures
January 2, 2019 (Happy New Year to you, dear reader!)
My husband had another seizure this morning. They seem to be happening with increased frequency and intensity, with the last two being December 22 and January 2 (this morning). These are not minor little "blank out seizures." They are more like grand mal, with foaming at the mouth and biting of the tongue. They seem to occur in the early morning generally, so far. I haven't witnessed one, but the description by the caregiver is quite dramatic. Since my husband and I have had no first-hand experience with seizures before, this is another learning curve for me. And of course it's also another source of stress. I find that my worry journal is very effective at helping me sort stress out these days!
The hospice nurse is called when my husband has a health event, and he or she visits in person to do an assessment, reports his or her findings to the doctor, and the doctor decides what to do about treatment, if any. Everything is handled direct with the facility, and I get a phone call from the facility to report the incident to me, then a phone call from the nurse to report observations, possible medication changes, and so on. When a stressful phone call wakes you out of a deep sleep and someone starts rattling off medication names and doses, it isn't always easy to grasp the conversation through the thick fog and the adrenaline. I've decided that whenever this happens, I will ask the medical technician at the facility for a new printout of medication orders for my file. I hope this will help me stay on top of things that have a tendency to spiral out of control at the drop of a hat.
When I went to see my husband today, he was rather lethargic, seemed to have a headache (He is unable to say, "I have a headache," but he did cup his hand on his head, exclaiming, "Ouch!"), and mostly wanted to curl up on his bed. All of that is apparently normal following a seizure. In spite of all that, he did eat all of his meal, which was served in his room. His appetite continues to be very good. And speaking of his appetite, I think I may have mentioned his substantial weight loss (from almost 200 lbs. down to 154 lbs.) and the fact that hospice has requested that he be given double portions if he will tolerate them. This is to ascertain whether his body is not processing nutrients or whether he isn't getting enough calories for weight maintenance.
The good news is that he tolerates the additional food and has gained five pounds! Anyone else would have gained 20 with the size helpings they put on his plate and the Ensure nutritional supplement, but I'll take the five. Apparently, his continuous pacing (though at a snail's pace) is causing his body to burn through the fuel provided. He can still absorb nutrition. Or at least if he isn't able to soak up everything, he's still able to absorb quite a bit.
I'd say this weight gain is an addendum to our Christmas miracle. Wouldn't you?
My husband had another seizure this morning. They seem to be happening with increased frequency and intensity, with the last two being December 22 and January 2 (this morning). These are not minor little "blank out seizures." They are more like grand mal, with foaming at the mouth and biting of the tongue. They seem to occur in the early morning generally, so far. I haven't witnessed one, but the description by the caregiver is quite dramatic. Since my husband and I have had no first-hand experience with seizures before, this is another learning curve for me. And of course it's also another source of stress. I find that my worry journal is very effective at helping me sort stress out these days!
The hospice nurse is called when my husband has a health event, and he or she visits in person to do an assessment, reports his or her findings to the doctor, and the doctor decides what to do about treatment, if any. Everything is handled direct with the facility, and I get a phone call from the facility to report the incident to me, then a phone call from the nurse to report observations, possible medication changes, and so on. When a stressful phone call wakes you out of a deep sleep and someone starts rattling off medication names and doses, it isn't always easy to grasp the conversation through the thick fog and the adrenaline. I've decided that whenever this happens, I will ask the medical technician at the facility for a new printout of medication orders for my file. I hope this will help me stay on top of things that have a tendency to spiral out of control at the drop of a hat.
When I went to see my husband today, he was rather lethargic, seemed to have a headache (He is unable to say, "I have a headache," but he did cup his hand on his head, exclaiming, "Ouch!"), and mostly wanted to curl up on his bed. All of that is apparently normal following a seizure. In spite of all that, he did eat all of his meal, which was served in his room. His appetite continues to be very good. And speaking of his appetite, I think I may have mentioned his substantial weight loss (from almost 200 lbs. down to 154 lbs.) and the fact that hospice has requested that he be given double portions if he will tolerate them. This is to ascertain whether his body is not processing nutrients or whether he isn't getting enough calories for weight maintenance.
The good news is that he tolerates the additional food and has gained five pounds! Anyone else would have gained 20 with the size helpings they put on his plate and the Ensure nutritional supplement, but I'll take the five. Apparently, his continuous pacing (though at a snail's pace) is causing his body to burn through the fuel provided. He can still absorb nutrition. Or at least if he isn't able to soak up everything, he's still able to absorb quite a bit.
I'd say this weight gain is an addendum to our Christmas miracle. Wouldn't you?
Wednesday, December 26, 2018
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!
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.
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| He gave me a hug! |
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.
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