The phone rang just now. Caller ID indicated that it was the memory care facility where my husband is living. I only returned from seeing him a few hours ago. It was a good visit, and he was doing well. What now?
With great trepidation, I reached for the phone, a sinking feeling in the pit of my stomach. "It's Friday night," I thought, "It's either an emergency, or they've decided not to keep him. Again. Either way, please, no!" [For more about all the moves, see "The Right Place."]
But it wasn't anything like that. It was just a question about medication. What a relief! Yet here I am, traumatized and panicked. Again. I feel as though I'm standing on the edge of a precipice. My hands are shaking, my breathing is shallow and rapid, my heart is pounding, I'm in a cold sweat, and I'm about to cry. I tell myself to breathe in slowly, breathe out slowly, relax. But I can't.
It's hard to be calm when you're waiting for the other shoe to drop.
Friday, June 29, 2018
Thursday, June 28, 2018
Joined at the Heart
It's a funny thing. Throughout most of our 48+ years of married life, my husband and I held each other more or less loosely. That is to say, he had his favorite things to do that I didn't necessarily enjoy but tolerated, I had my favorite things to do that he wasn't even remotely interested in doing with me, and then there were the things we liked to do together. It worked really well. We weren't "joined at the hip," and we liked it that way. And suddenly he got this illness. Well, it seemed sudden, anyway, though I'm sure it actually wasn't.
As time went on, I couldn't be out of his sight for five minutes without causing him distress. He followed me around everywhere, even to the bathroom. It was like a noose tightening around me sometimes, and it was hard to breathe. It was difficult to accept that this strong, decisive, pioneering man now depended on me for absolutely everything. It was a heavy responsibility, and it still is.
Gradually, we became inseparable as I cared for all his needs of daily living, maneuvered social situations alongside him, ensured that his quality of life was as close to what he was used to as possible, took him for drives to calm him, everything. Everywhere I went, he went. Everywhere he went, I went. We held hands like a sweet, little, old couple. My feelings for him became more and more tender as time passed and compassion overcame fear. We were joined at the heart, but Alzheimer's was viciously separating us.
Many times, I have been teary-eyed at the unfairness of it all, the frustration of it all, the pressure of it all, the stress and tension of it all. The fear. The fear of it all. The pain of realizing he is slowly, inexorably leaving me is excruciating. Some days, I really don't know how I'm going to go on.
Alzheimer's is a cruel, relentless disease.
As time went on, I couldn't be out of his sight for five minutes without causing him distress. He followed me around everywhere, even to the bathroom. It was like a noose tightening around me sometimes, and it was hard to breathe. It was difficult to accept that this strong, decisive, pioneering man now depended on me for absolutely everything. It was a heavy responsibility, and it still is.
Gradually, we became inseparable as I cared for all his needs of daily living, maneuvered social situations alongside him, ensured that his quality of life was as close to what he was used to as possible, took him for drives to calm him, everything. Everywhere I went, he went. Everywhere he went, I went. We held hands like a sweet, little, old couple. My feelings for him became more and more tender as time passed and compassion overcame fear. We were joined at the heart, but Alzheimer's was viciously separating us.
Many times, I have been teary-eyed at the unfairness of it all, the frustration of it all, the pressure of it all, the stress and tension of it all. The fear. The fear of it all. The pain of realizing he is slowly, inexorably leaving me is excruciating. Some days, I really don't know how I'm going to go on.
Alzheimer's is a cruel, relentless disease.
Saturday, June 23, 2018
The Right Place
A few days after I wrote "Time Has Come" and "I Live Here," we were asked by the memory care facility to move my husband to a different location immediately. Based on what I had seen, I had already decided this would be a good idea anyhow. The staff just didn't seem adequately prepared to properly care for my husband's level of Alzheimer's, he was swiftly going downhill, they were not able to "control" him, and they wanted to start right out increasing medications or substituting others. It made me uncomfortable. Listen to your gut.
As I happened to be out of town (fabulous timing), our kids pitched in with the help of the placement agency mentioned in "Time Has Come," and my husband had been placed in a board and care closer to home in a matter of hours. It wasn't the best situation, but it was available, close to home, and quick. In these parts, availability is at a premium. Everything seemed to be going well except that the doctor was less than responsive to the owner's requests for medication approvals, which was of course frustrating for everyone. And then another resident's husband became upset that my husband and his wife were holding hands (it happens). He's the jealous type, I guess, and he confronted my husband. This is something you don't want to do to a person with advanced Alzheimer's. The person is confused, has no idea what the problem is, and feels threatened and attacked. None of that is good. Happily, no harm was done; however, the gentleman insisted that my husband be relocated.
And so my husband was moved to the owner's other board and care on the same court. At first, it seemed to be a better situation. But my husband reportedly became very resistant to personal care there, batting away the caregivers' hands, trying to kick them, and so on. Once again, they were apparently unprepared to handle this type of situation.
My husband collapsed the day before his birthday and had to be rushed to the hospital. His blood pressure was 55/40, he had cellulitis, and he was septic. You can read all about that experience in "The First Infection."
When he was released from the hospital, probably too soon, he required extra assistance. And so I went twice a day to feed him and make sure he had taken his medications, as he was spitting them out. He regained a bit of strength but became even more combative. Medications were increased but made no difference. In a board and care, there isn't a lot of room to roam, and it's best if a person is docile and likes to watch television. It's also best if a person doesn't have to be dragged out of bed, manhandled into the shower room, restrained while clothing is basically ripped off, and forcibly held in place for a scrubdown by four people. I'm pretty sure I would be kicking and scratching and screaming under those conditions, too. But it's what they felt they had to do to keep him clean. Once again, we were asked to find a new place for him. I suggested that the staff be trained in "Bathing Without a Battle," but of course it was already too late to try it on my husband. Not there, anyway.
Back to the agency we went. Two larger facilities agreed to accept him (most small facilities are not prepared to accept someone who's been labeled "combative"), and off we went to tour the places. I debated with myself all night because of a lot of factors (including the steep increase in cost, let's be real). But the less expensive facility reminded me too much of the first place we'd tried, and I decided to listen to my gut. So I chose the second option. His fourth location in less than three months. That's a lot of adjusting for anybody, but especially for someone with Alzheimer's.
He just moved in yesterday, so it remains to be seen what the outcome will be. But, at least for now, the folks appear to use a different approach that is more conducive to a peaceful situation. There's plenty of room to roam. There's even room designed for roaming. He appeared fairly content when I went to see him today. I hope he'll be safe. Especially from the woman who's decided she's his new girlfriend. Already. Well, who could blame her?
As I happened to be out of town (fabulous timing), our kids pitched in with the help of the placement agency mentioned in "Time Has Come," and my husband had been placed in a board and care closer to home in a matter of hours. It wasn't the best situation, but it was available, close to home, and quick. In these parts, availability is at a premium. Everything seemed to be going well except that the doctor was less than responsive to the owner's requests for medication approvals, which was of course frustrating for everyone. And then another resident's husband became upset that my husband and his wife were holding hands (it happens). He's the jealous type, I guess, and he confronted my husband. This is something you don't want to do to a person with advanced Alzheimer's. The person is confused, has no idea what the problem is, and feels threatened and attacked. None of that is good. Happily, no harm was done; however, the gentleman insisted that my husband be relocated.
And so my husband was moved to the owner's other board and care on the same court. At first, it seemed to be a better situation. But my husband reportedly became very resistant to personal care there, batting away the caregivers' hands, trying to kick them, and so on. Once again, they were apparently unprepared to handle this type of situation.
My husband collapsed the day before his birthday and had to be rushed to the hospital. His blood pressure was 55/40, he had cellulitis, and he was septic. You can read all about that experience in "The First Infection."
When he was released from the hospital, probably too soon, he required extra assistance. And so I went twice a day to feed him and make sure he had taken his medications, as he was spitting them out. He regained a bit of strength but became even more combative. Medications were increased but made no difference. In a board and care, there isn't a lot of room to roam, and it's best if a person is docile and likes to watch television. It's also best if a person doesn't have to be dragged out of bed, manhandled into the shower room, restrained while clothing is basically ripped off, and forcibly held in place for a scrubdown by four people. I'm pretty sure I would be kicking and scratching and screaming under those conditions, too. But it's what they felt they had to do to keep him clean. Once again, we were asked to find a new place for him. I suggested that the staff be trained in "Bathing Without a Battle," but of course it was already too late to try it on my husband. Not there, anyway.
Back to the agency we went. Two larger facilities agreed to accept him (most small facilities are not prepared to accept someone who's been labeled "combative"), and off we went to tour the places. I debated with myself all night because of a lot of factors (including the steep increase in cost, let's be real). But the less expensive facility reminded me too much of the first place we'd tried, and I decided to listen to my gut. So I chose the second option. His fourth location in less than three months. That's a lot of adjusting for anybody, but especially for someone with Alzheimer's.
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| Room to roam. This area provides a safe space (note railing for stability) for walking around. And around.. |
Friday, June 8, 2018
The First Infection
Infections that begin in warm, damp places spread like wildfire. Just ask any parent who has changed a baby's diaper only to discover fiery, angry redness where a happy, healthy bottom had been just an hour before. What starts out as a rash or a mild urinary tract infection in a person who is incontinent and spends a lot of time sitting can suddenly become a life threatening event.
Last Saturday, I had just returned from shopping for birthday celebration supplies for my husband's Big 7-0 the next day. I was getting ready to make my daily visit to him* when I got a phone call from the facility letting me know that he had collapsed, his blood pressure was dangerously low, and he was being taken to the nearest hospital via ambulance. I rushed to his side.
I haven't spent a lot of time in emergency rooms, thankfully. The doctors and nurses and techs and aides were rushing to and fro, and the whole experience quite took my breath away, to be frank. I was in shock, and I was being asked to make on-the-spot decisions about my husband's care that I just wasn't emotionally ready for.
Noting his DNR (do not resuscitate) status, the staff bombarded me with questions. Did I want them to continue pumping fluids into him to bring his blood pressure up? Was it okay if a course of antibiotics was started for the sepsis? If he needed help breathing, was it okay to administer oxygen? If he "crashed," what did I want done? My head was spinning. What to do? Treat? Not treat?
We had talked about this. We had talked about the fact that he doesn't want heroic action taken, doesn't want to be intubated, doesn't want to be resuscitated. We had talked about at what point to decide whether or not to treat illnesses and infections. When to "let nature take its course." It's important to have these discussions sooner rather than later, and we did that. I'm okay with the DNR and the DNI (do not intubate). But I just couldn't bring myself to forego treatment for an infection. Not this one, anyway. Weak and shaky, he returned to the facility today. He had given the hospital staff a run for their money, but he had come through it.
.
Did I do the wrong thing? I can't tell you. All I can say is that I wasn't ready to make a monumental decision that I might regret for the rest of my life. We'll see how it goes from here. From past experiences of others, I know that the first infection like this is a milestone of sorts. It will no doubt happen again, and probably sooner rather than later. I'm hoping for later. I need time to think.
*What started as a respite stay at one place has become long-term placement at a third place. Long story. I'm working on some posts about this, but I thought it was important to go ahead and post this one instead of waiting.
Last Saturday, I had just returned from shopping for birthday celebration supplies for my husband's Big 7-0 the next day. I was getting ready to make my daily visit to him* when I got a phone call from the facility letting me know that he had collapsed, his blood pressure was dangerously low, and he was being taken to the nearest hospital via ambulance. I rushed to his side.
I haven't spent a lot of time in emergency rooms, thankfully. The doctors and nurses and techs and aides were rushing to and fro, and the whole experience quite took my breath away, to be frank. I was in shock, and I was being asked to make on-the-spot decisions about my husband's care that I just wasn't emotionally ready for.
Noting his DNR (do not resuscitate) status, the staff bombarded me with questions. Did I want them to continue pumping fluids into him to bring his blood pressure up? Was it okay if a course of antibiotics was started for the sepsis? If he needed help breathing, was it okay to administer oxygen? If he "crashed," what did I want done? My head was spinning. What to do? Treat? Not treat?
We had talked about this. We had talked about the fact that he doesn't want heroic action taken, doesn't want to be intubated, doesn't want to be resuscitated. We had talked about at what point to decide whether or not to treat illnesses and infections. When to "let nature take its course." It's important to have these discussions sooner rather than later, and we did that. I'm okay with the DNR and the DNI (do not intubate). But I just couldn't bring myself to forego treatment for an infection. Not this one, anyway. Weak and shaky, he returned to the facility today. He had given the hospital staff a run for their money, but he had come through it.
.
Did I do the wrong thing? I can't tell you. All I can say is that I wasn't ready to make a monumental decision that I might regret for the rest of my life. We'll see how it goes from here. From past experiences of others, I know that the first infection like this is a milestone of sorts. It will no doubt happen again, and probably sooner rather than later. I'm hoping for later. I need time to think.
*What started as a respite stay at one place has become long-term placement at a third place. Long story. I'm working on some posts about this, but I thought it was important to go ahead and post this one instead of waiting.
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