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?
Wednesday, January 2, 2019
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.
 |
| 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.
Tuesday, December 18, 2018
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.
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.
Sunday, December 2, 2018
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!
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!
Friday, November 30, 2018
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?
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.
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?
Thursday, November 22, 2018
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!
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!
Sunday, October 21, 2018
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
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
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