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.
Thursday, January 24, 2019
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?
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