Gentle readers....
H has been in a nursing facility since September, 2014 subsequent to his car accident.
About two weeks ago, I got a call from the nursing facility that his family was taking him out of the facility and moving him into "an apartment." The nursing facility said that he was leaving AMA (Against Medical Advice) as their evaluation is that he needs 24 hour care...which H vehemently denies...and so does his family. I am legally unable to stop H from leaving the nursing facility.
The next day he had moved out into temporary housing in a "medical hotel," which provides temporary, independent housing through a local service organization for people with HIV.
I was not consulted and it was a surprise that he actually moved out. They wrangled to get me to take care of him for about a year and I repeatedly said NFW (no). So, they just moved him out.
H is elated as he has been "released from Hell" and now has his own room that is quiet. His family and some friends are all helping him (from what I can tell, about 6 - 8 people) get settled and get his care needs set up. The rub is, they don't understand the full extent of his needs...they are clueless that its taking 6 or so of them to help him, yet they don't understand why one person can't do it all, like I tried to for many years...even tho' I did have help.
So, today, there is much chatter about his medications. He takes (last count) 22 different meds a day and the total number of pills is about 50 a day. Someone has to order the meds, set them up...but they didn't think about that. They didn't ask me about this, nor did they plan ahead.
His family has supported him in his fantasy that he can live on his own, even though I didn't think he could for several years before the accident. And, so they have put him at great risk because H whined about how much he hated where he was.
This will likely not end well for him and that make me very sad. My plan is to help, but not rescue him...although part of me says, "just walk away." I haven't been able to do that for years...maybe now is the time to do it.
Showing posts with label family. Show all posts
Showing posts with label family. Show all posts
Tuesday, March 15, 2016
Friday, October 29, 2010
Halloween snippets
Family visits
H's dad and youngest sister (G) came for a visit; they live in a far away part of the US.
The occasion was a wonderful soiree for the middle sister's 50th B-day.
G hasn't seen H for over two years now. Before she came up, H told her that he "is not sure he can keep doing this." And when she saw him, she was shocked at how thin and frail he was compared to two years ago, the last time she saw him.
G is wanting to come up to see H again before the end of the calendar year. And I am glad for that because there is no way that H can make the trip down to see her.
My dance card is full, thank you tho'
On a related topic, H has to have his gallbladder removed and they also found an irregular heart beat when they did an endoscopy.
So, off to a cardiologist for a pre-surgery screening (never heard of this before).
I'm terrified that H won't wake up from the surgery and I told him so. He said, "I know, (asm), but it won't be bad for me, I'll be asleep. Know that I love you."
Present is as present does
I strive to be fully present when I'm with H (well, just in general). As a result, I find that I say things I don't expect, such as, "I'm tired of working all the time...at work, at home...I have to do everything now...it's just not fair."
H responds, "I'm sorry..."
"Me too, but I know that you would change it if you could and I would too. But it is what it is, so let's make the best of the time we have."
"Is it OK if I take a nap?" H asks.
"Of course, honey."
H's dad and youngest sister (G) came for a visit; they live in a far away part of the US.
The occasion was a wonderful soiree for the middle sister's 50th B-day.
G hasn't seen H for over two years now. Before she came up, H told her that he "is not sure he can keep doing this." And when she saw him, she was shocked at how thin and frail he was compared to two years ago, the last time she saw him.
G is wanting to come up to see H again before the end of the calendar year. And I am glad for that because there is no way that H can make the trip down to see her.
My dance card is full, thank you tho'
On a related topic, H has to have his gallbladder removed and they also found an irregular heart beat when they did an endoscopy.
So, off to a cardiologist for a pre-surgery screening (never heard of this before).
I'm terrified that H won't wake up from the surgery and I told him so. He said, "I know, (asm), but it won't be bad for me, I'll be asleep. Know that I love you."
Present is as present does
I strive to be fully present when I'm with H (well, just in general). As a result, I find that I say things I don't expect, such as, "I'm tired of working all the time...at work, at home...I have to do everything now...it's just not fair."
H responds, "I'm sorry..."
"Me too, but I know that you would change it if you could and I would too. But it is what it is, so let's make the best of the time we have."
"Is it OK if I take a nap?" H asks.
"Of course, honey."
Friday, October 01, 2010
First snippets of Fall
Doctor, doctor
As expected, H's health continues to be up and down, but mostly slowly down. Most recently, he's been having stomach pain and is having a much harder time walking than ever before. Some of the walking issue is his dementia and some of it is that he has a somewhat lame leg and hand due to a stroke about 15 years ago. H said to me last night, "I'm so mad at how frail I've gotten. I worry that I'll never recover...."
H and I joke about his dance card being full (on both sides) and now we are talking about stapling another dance card on so that we can add a potential gall bladder issue as well as the need for ongoing PT, not to mention more trouble holding things due to shaking, new pain now in his scalp from neuropathy, etc. And he's not eating very much and is down to 140 lbs again.
So, a series of Dr. visits this week...everyday this week, a new doctor, an old doctor, a referral, etc. And then next week, Dr. appts for him 3 of the 5 days. Hard to find the time to work.
Now, we haven't had a spate of Dr. appts like this in a long time (thankfully), but even tho' I am more than completely capable of dealing with it all, it bores the hell out of me. And while I am sympathetic and want to help, I just wonder when this will all stop...for H's sake as well as mine.
A death in the family
Our young Siamese cat finally died; he should have lived for 20+ years as Siamese are a very long-lived breed. Last Tuesday, I found him stretched out on the kitchen floor in a pool of his own (well, you know) at about 6am. And he had been coughing up blood overnight. We knew that he was close, but like most folks, we were looking for the right time...not too soon, not too late...you know. I feel really bad that we didn't put him down before he got to this point.
I went to comfort him...not knowing if he was dead or not...and gently petted his head and called his name. He cried and cried and cried and cried...wailing really...and his face was sunken in (dramatic since the night before) and his eyes hollow and red. It was like knives into my heart...my poor boy...he is only 7 years old. He was one of my favorite kitties of all time. He cried for hours until we got him to the vet when they opened at 9. I can still hear his crying in my head a week later.
So we go to the vet, H and I, to put our friend down. Now, I am a complete sobbing mess...can't even talk to the vet. H to his credit was very calm and just spent time telling the cat how much we loved him until the end. H hardly shed a tear. But I blubbered all the way there and back and the whole time we were at the vet. Last cat we lost, I shed a tear or two, but sheesh, nothing like this.
I think finding the cat in the state I did triggered a lot of my grief around finding H in in similar states (many times) over the years. If I had found the cat dead, maybe it wouldn't have been so bad. But seeing someone you love so sick they can't raise their head, looking so different from just the night before, and crying and crying and crying...very hard.
I am so glad that my kitty is relieved of his pain and suffering; I am glad that we were able to do that for him.
As expected, H's health continues to be up and down, but mostly slowly down. Most recently, he's been having stomach pain and is having a much harder time walking than ever before. Some of the walking issue is his dementia and some of it is that he has a somewhat lame leg and hand due to a stroke about 15 years ago. H said to me last night, "I'm so mad at how frail I've gotten. I worry that I'll never recover...."
H and I joke about his dance card being full (on both sides) and now we are talking about stapling another dance card on so that we can add a potential gall bladder issue as well as the need for ongoing PT, not to mention more trouble holding things due to shaking, new pain now in his scalp from neuropathy, etc. And he's not eating very much and is down to 140 lbs again.
So, a series of Dr. visits this week...everyday this week, a new doctor, an old doctor, a referral, etc. And then next week, Dr. appts for him 3 of the 5 days. Hard to find the time to work.
Now, we haven't had a spate of Dr. appts like this in a long time (thankfully), but even tho' I am more than completely capable of dealing with it all, it bores the hell out of me. And while I am sympathetic and want to help, I just wonder when this will all stop...for H's sake as well as mine.
A death in the family
Our young Siamese cat finally died; he should have lived for 20+ years as Siamese are a very long-lived breed. Last Tuesday, I found him stretched out on the kitchen floor in a pool of his own (well, you know) at about 6am. And he had been coughing up blood overnight. We knew that he was close, but like most folks, we were looking for the right time...not too soon, not too late...you know. I feel really bad that we didn't put him down before he got to this point.
I went to comfort him...not knowing if he was dead or not...and gently petted his head and called his name. He cried and cried and cried and cried...wailing really...and his face was sunken in (dramatic since the night before) and his eyes hollow and red. It was like knives into my heart...my poor boy...he is only 7 years old. He was one of my favorite kitties of all time. He cried for hours until we got him to the vet when they opened at 9. I can still hear his crying in my head a week later.
So we go to the vet, H and I, to put our friend down. Now, I am a complete sobbing mess...can't even talk to the vet. H to his credit was very calm and just spent time telling the cat how much we loved him until the end. H hardly shed a tear. But I blubbered all the way there and back and the whole time we were at the vet. Last cat we lost, I shed a tear or two, but sheesh, nothing like this.
I think finding the cat in the state I did triggered a lot of my grief around finding H in in similar states (many times) over the years. If I had found the cat dead, maybe it wouldn't have been so bad. But seeing someone you love so sick they can't raise their head, looking so different from just the night before, and crying and crying and crying...very hard.
I am so glad that my kitty is relieved of his pain and suffering; I am glad that we were able to do that for him.
Tuesday, September 14, 2010
September snippets
A break and a new role
Had a few weeks of vacation last month and travelled a bit without H. Like before, I arranged for a trained caregiver to come in to keep an eye on him and to cook. 'Twas wonderful to get a way and when I came back, my first thought when I saw H was, "Oh my, this man is a mess...poor guy." In this case, the break gave me some perspective and increased my sympathy for him.
Came back and started a new role at the same company I've worked at for over 8 years now. I am a bit daunted right now, but it's great to have something to focus on that is challenging. Takes my mind off H and all that stuff.
Another half century
H's sister is turning 50 this month and the extended family is coming to town for the soiree.
At first, H told me that "I have nothing to wear." But I explained to him that he did. Then he said, "Well, I don’t know if I want to go because I won't be able to stay long." I then offered to get a room at the hotel where the party is being held; he said, "No, I'll spend all my time in bed."
Finally, he fessed up: "I don't want them to see how thin & lame I am...that's the real reason I don't want to go."
I don't know which is worse for H & his family: him not going "because he is too sick" (the reason he couldn't attend his mom's funeral out of town) or him going and looking very thin, frail, and sick. I told him that they all know he is sick, but he said, "yea, but they don't have to look at it."
Another sick one in the house
One of our cats is quite ill with a feline virus; it's not FIV, but is similar. And so the cat is losing weight, has been in and out of the vets's office, and is sleeping much of the time.
Our cats are our kids and this distresses H a great deal. He said to me, "ASM, can you please give the cat his medicine...I can't do it and I don't want to see you give it to him. I just can't stand to see him shrink away, gag on the medication, and...we know he's going to die soon, but who knows when. I just can't deal."
"Honey, I understand," I said softly, "it's very much like my experience with you. I'll take care of the cat."
H said, "Oh, it is like me...how do you do it?"
"Because I have to and no one else can or will."
"Thank you," H says, now crying in my arms.
Had a few weeks of vacation last month and travelled a bit without H. Like before, I arranged for a trained caregiver to come in to keep an eye on him and to cook. 'Twas wonderful to get a way and when I came back, my first thought when I saw H was, "Oh my, this man is a mess...poor guy." In this case, the break gave me some perspective and increased my sympathy for him.
Came back and started a new role at the same company I've worked at for over 8 years now. I am a bit daunted right now, but it's great to have something to focus on that is challenging. Takes my mind off H and all that stuff.
Another half century
H's sister is turning 50 this month and the extended family is coming to town for the soiree.
At first, H told me that "I have nothing to wear." But I explained to him that he did. Then he said, "Well, I don’t know if I want to go because I won't be able to stay long." I then offered to get a room at the hotel where the party is being held; he said, "No, I'll spend all my time in bed."
Finally, he fessed up: "I don't want them to see how thin & lame I am...that's the real reason I don't want to go."
I don't know which is worse for H & his family: him not going "because he is too sick" (the reason he couldn't attend his mom's funeral out of town) or him going and looking very thin, frail, and sick. I told him that they all know he is sick, but he said, "yea, but they don't have to look at it."
Another sick one in the house
One of our cats is quite ill with a feline virus; it's not FIV, but is similar. And so the cat is losing weight, has been in and out of the vets's office, and is sleeping much of the time.
Our cats are our kids and this distresses H a great deal. He said to me, "ASM, can you please give the cat his medicine...I can't do it and I don't want to see you give it to him. I just can't stand to see him shrink away, gag on the medication, and...we know he's going to die soon, but who knows when. I just can't deal."
"Honey, I understand," I said softly, "it's very much like my experience with you. I'll take care of the cat."
H said, "Oh, it is like me...how do you do it?"
"Because I have to and no one else can or will."
"Thank you," H says, now crying in my arms.
Tuesday, March 30, 2010
Can't go home
Sad news...H's mom died unexpectedly last week. We're not certain, but we think the cause was an accidental overdose of pain medication.
Needless to say, H is beside himself, not just because his mom died, but also because he's not able to travel to the funeral due to his health. Fastest travel times to get to the service is about 15 hours and there's just no way he's up to the travel, even if I travel with him. He can only be up for 3 to 4 hours at a time at home….
It took a long time on the phone for his family to get that his health is just too bad to travel; maybe not being able to attend his mom's service will help get them out of denial. "Oh, you'll just be tired...we're all tired." You have no idea, folks.
After the service, which we participated in via Web video, H said to me, "I'm so glad I didn't go. That trip would have killed me."
H has been having dreams where he's lost, can't find his car, his cell phone, or his cane. And he can't seem to get home, no matter what he tries. In fact, in his dream, he's not certain that he has a home to go to, but he knows he can't stay where he is.
Needless to say, H is beside himself, not just because his mom died, but also because he's not able to travel to the funeral due to his health. Fastest travel times to get to the service is about 15 hours and there's just no way he's up to the travel, even if I travel with him. He can only be up for 3 to 4 hours at a time at home….
It took a long time on the phone for his family to get that his health is just too bad to travel; maybe not being able to attend his mom's service will help get them out of denial. "Oh, you'll just be tired...we're all tired." You have no idea, folks.
After the service, which we participated in via Web video, H said to me, "I'm so glad I didn't go. That trip would have killed me."
H has been having dreams where he's lost, can't find his car, his cell phone, or his cane. And he can't seem to get home, no matter what he tries. In fact, in his dream, he's not certain that he has a home to go to, but he knows he can't stay where he is.
Wednesday, February 03, 2010
Snippets from the edge (again)
Oooh, look, ponies
We're driving to the Dr. yesterday, past some pasture land where some Shetlands live. H stands up in the car (a convertible with the top down) and is leaning outside the car pointing and yelling (you guessed it), "Oooh, look, ponies!" Giant smile on his face, even as I pulled him back into his seat with the seat belt.
How I got it
Took H to a new Dr. (GP) yesterday. When the Dr. came in, H blurted out, "I just want to tell you how I got HIV…." And he did. I filled in the rest of the history with H nodding, although not necessarily in time with my information.
Salvage
Well, the new anti-viral regimen is considered a salvage regimen, where they just throw a bunch of anti-virals at the virus in hope of controlling it. Not surprising, but I had to figure this out myself with research…why can't the doctors just tell me this kind of stuff? I'd prefer honesty, thank you.
Yellow/gray
H's sister came to visit last weekend and commented privately to me, "His skin, it's kinda yellow/gray now. He's lost weight." No kidding. She was surprised that H got so tired during her two-hour visit.
A whole lotta shaking
H's hands are shaking more and more and his head's beginning to as well a bit. He is struggling to sign his name on paperwork.
Feeling any better?
I asked H if he thought that his viral load was dropping, if he was feeling any better since he's been on his meds for over three weeks now. He says, "Not really…I'm getting more tired…it may be going up instead." "I'm sorry, honey…are you afraid?" "Not yet," he says.
Please forgive us
Got an email from H's parents where they said, "please forgive us for not supporting you as much as we could because we were busy with our own lives.… I sure hope that you both can spend Christmas with us at our new house." Errrr, thanks, but you really need to come up here and visit your son. Don't you get it? It isn't about me…and H may not make it to Christmas ("let's wait and see how he does").
We're driving to the Dr. yesterday, past some pasture land where some Shetlands live. H stands up in the car (a convertible with the top down) and is leaning outside the car pointing and yelling (you guessed it), "Oooh, look, ponies!" Giant smile on his face, even as I pulled him back into his seat with the seat belt.
How I got it
Took H to a new Dr. (GP) yesterday. When the Dr. came in, H blurted out, "I just want to tell you how I got HIV…." And he did. I filled in the rest of the history with H nodding, although not necessarily in time with my information.
Salvage
Well, the new anti-viral regimen is considered a salvage regimen, where they just throw a bunch of anti-virals at the virus in hope of controlling it. Not surprising, but I had to figure this out myself with research…why can't the doctors just tell me this kind of stuff? I'd prefer honesty, thank you.
Yellow/gray
H's sister came to visit last weekend and commented privately to me, "His skin, it's kinda yellow/gray now. He's lost weight." No kidding. She was surprised that H got so tired during her two-hour visit.
A whole lotta shaking
H's hands are shaking more and more and his head's beginning to as well a bit. He is struggling to sign his name on paperwork.
Feeling any better?
I asked H if he thought that his viral load was dropping, if he was feeling any better since he's been on his meds for over three weeks now. He says, "Not really…I'm getting more tired…it may be going up instead." "I'm sorry, honey…are you afraid?" "Not yet," he says.
Please forgive us
Got an email from H's parents where they said, "please forgive us for not supporting you as much as we could because we were busy with our own lives.… I sure hope that you both can spend Christmas with us at our new house." Errrr, thanks, but you really need to come up here and visit your son. Don't you get it? It isn't about me…and H may not make it to Christmas ("let's wait and see how he does").
Thursday, January 28, 2010
Family fun
H continues to be down much of the time while we're waiting for his viral load to (hopefully) drop with the new anti-viral meds that he started a few weeks ago. And his dementia continues to get worse now…more of the same, really.
I sent out an email update to his family and told them that three weeks into his new meds, I'm not seeing the turnaround that I've seen prior when he's started new meds.
And I told him about his fixation and abject fear about certain conspiracy theories: "great culling," Bildenberg Group, the US government caused/let 9/11 happen, etc.
I asked them not to encourage him about these topics.Some of them breathlessly talk about these topics without giving anyone a chance to say anything.
What I got back was a whole lot of weirdness (no surprise).
"He's not crazy because he thinks these things are true. I'm worried about what is on Fox News also…everyone should be."…I never said he was crazy or that these things aren't scary. (Ummm, yea Fox News IS scary!)
"I called him this afternoon and he seem very lucid."…not my day-to-day experience.
"My son has OCD paranoia, so I understand how difficult this is to deal with."…uhh, no you don't…you don't have any idea where H is, especially based on a 5 minute conversation.
Sigh.
My whole point was to tell them that he's afraid of these conspiracy theories. And since I care about him and don't want him to be afraid (e.g., not able to sleep at night), they need to help me manage his emotional state. Specifically, stop talking with him about these things…you know who you are!
I'm sending these emails out to give them a regular cadence of information about H. Clearly, they don't like what they're hearing (and I don't like it either). All of this is to give them information so that when things happen (sic), they won't be surprised.
I sent out an email update to his family and told them that three weeks into his new meds, I'm not seeing the turnaround that I've seen prior when he's started new meds.
And I told him about his fixation and abject fear about certain conspiracy theories: "great culling," Bildenberg Group, the US government caused/let 9/11 happen, etc.
I asked them not to encourage him about these topics.Some of them breathlessly talk about these topics without giving anyone a chance to say anything.
What I got back was a whole lot of weirdness (no surprise).
"He's not crazy because he thinks these things are true. I'm worried about what is on Fox News also…everyone should be."…I never said he was crazy or that these things aren't scary. (Ummm, yea Fox News IS scary!)
"I called him this afternoon and he seem very lucid."…not my day-to-day experience.
"My son has OCD paranoia, so I understand how difficult this is to deal with."…uhh, no you don't…you don't have any idea where H is, especially based on a 5 minute conversation.
Sigh.
My whole point was to tell them that he's afraid of these conspiracy theories. And since I care about him and don't want him to be afraid (e.g., not able to sleep at night), they need to help me manage his emotional state. Specifically, stop talking with him about these things…you know who you are!
I'm sending these emails out to give them a regular cadence of information about H. Clearly, they don't like what they're hearing (and I don't like it either). All of this is to give them information so that when things happen (sic), they won't be surprised.
Tuesday, December 01, 2009
Turkey snippets
Smokin' 'n' drinkin'
While I was in Europe last month, I decided to smoke and drink out on the town with my pals from work. I worried a bit about the drinking…if I had my first drink in 7+ months, would I be able to stop?...but all for naught. 'Twas a social thing only. During the day, no cravings; no cravings upon my return home. I could take or leave smoking on the road, but once I got home, I wanted to smoke more.
Down for a visit
Although I've only got one response from H's family to my status email, H will be heading South to visit many of them after Christmas. They are eager to see him and I'm glad that he wants to go. Also, gives me 2+ weeks of break, which I am grateful for.
All is calm
H is doing rather well physically right now. We'll know what his viral load is here in a few weeks. What's so odd is that he's stable right now and his spirits are good. In some ways, I don't know what to do with him when there isn't a health issue going. His dementia is still worsening tho'.
When I'm sick
Over the past several weeks, I've had two migraine headaches and also got a weird flu. H was good about this, as there was no way that I can keep up at home when I was that sick. He said, "Sheesh, even when you're sick, you don't get a break." I replied, "Yup, I know." And, to his credit, he asked me for nothing during my sick times.
Deteriorating in front of my eyes
One of H's sister lives in another state, not too far from his parents. Since this sister lives closest, she sees what is happening with his parents. Like most folks in their mid to late 70s, they have a myriad of health issues, but some dementia is beginning to creep in.
His sister said to me, "I can't believe it, I'm watching them deteriorate before my eyes…it's horrible (crying)." I told her that I understood as I'm watching H deteriorate as well. She asked me what she should do…I said, "love them and realize that you can only do so much to help them…you can't stop them aging. Most importantly, just be there for them."
While I was in Europe last month, I decided to smoke and drink out on the town with my pals from work. I worried a bit about the drinking…if I had my first drink in 7+ months, would I be able to stop?...but all for naught. 'Twas a social thing only. During the day, no cravings; no cravings upon my return home. I could take or leave smoking on the road, but once I got home, I wanted to smoke more.
Down for a visit
Although I've only got one response from H's family to my status email, H will be heading South to visit many of them after Christmas. They are eager to see him and I'm glad that he wants to go. Also, gives me 2+ weeks of break, which I am grateful for.
All is calm
H is doing rather well physically right now. We'll know what his viral load is here in a few weeks. What's so odd is that he's stable right now and his spirits are good. In some ways, I don't know what to do with him when there isn't a health issue going. His dementia is still worsening tho'.
When I'm sick
Over the past several weeks, I've had two migraine headaches and also got a weird flu. H was good about this, as there was no way that I can keep up at home when I was that sick. He said, "Sheesh, even when you're sick, you don't get a break." I replied, "Yup, I know." And, to his credit, he asked me for nothing during my sick times.
Deteriorating in front of my eyes
One of H's sister lives in another state, not too far from his parents. Since this sister lives closest, she sees what is happening with his parents. Like most folks in their mid to late 70s, they have a myriad of health issues, but some dementia is beginning to creep in.
His sister said to me, "I can't believe it, I'm watching them deteriorate before my eyes…it's horrible (crying)." I told her that I understood as I'm watching H deteriorate as well. She asked me what she should do…I said, "love them and realize that you can only do so much to help them…you can't stop them aging. Most importantly, just be there for them."
Wednesday, November 11, 2009
Family response
My prior post is the text of an email that I sent to H's family to give them a sense of where he is.
Of the 3 recipients (two sisters and parents), only one sister replied:
"...that is sad news, very sad indeed. Thanks for the update. I know some people who can help with H's caregiving…just let me know and I'll fwd their contact information."
Trouble is that a full-time (or even part-time) caregiver is waaay more than I can afford ($800 - $1,000/week) and that wasn't really the point of my email. (I do worry about that as H declines further that I won't be able to keep him at home…even tho' part of me would just like him to leave.)
Really, all I wanted to do was to give the family a sense of where H is. Interesting to me that I got only one response and that was to get some "hired help.
I was hoping to hear that they all will spend as much time with H as they can while they can.
Of the 3 recipients (two sisters and parents), only one sister replied:
"...that is sad news, very sad indeed. Thanks for the update. I know some people who can help with H's caregiving…just let me know and I'll fwd their contact information."
Trouble is that a full-time (or even part-time) caregiver is waaay more than I can afford ($800 - $1,000/week) and that wasn't really the point of my email. (I do worry about that as H declines further that I won't be able to keep him at home…even tho' part of me would just like him to leave.)
Really, all I wanted to do was to give the family a sense of where H is. Interesting to me that I got only one response and that was to get some "hired help.
I was hoping to hear that they all will spend as much time with H as they can while they can.
Thursday, November 05, 2009
Thought you should know
A few days ago, I sent an email to H's family to tell them about my worries and to give them some idea about what is going on.
Here's the text of that email (kinda long, apologies). In a future post, I'll give y'all a rundown of their reply.
Beloved family,
I hope that I have all your correct email addresses here….
I wanted to give you all a private update on how H is doing. Please don’t forward this email to H as I don’t want to have him worry unnecessarily or hurt his feelings.
Please don't worry, I'm not wanting to "put him somewhere" right now, nor is he having any acute health issues right now. And, I'm not trying to frighten you or request any action from you.
I'm telling you this because I know that we all love H and you need to know what is happening.
What I am seeing is a continuation and acceleration of his general physical and mental decline, especially compared to a year ago. Many of our long-time friends see this too and have told me their stories.
His HIV viral load has been down this year (in spite of now being off his anti-virals) and his T-cell count is normal for a man his age (highest that it's been in a decade or more). Usually, when his viral load is down, he does better physically and mentally, but not this time. He'll get another blood test next month.
His doctor has told me that they can control his virus, but his dementia will get worse. And it is:
-He can't operate the washing machine any more…he gets confused by the dial and what to do. We've had this washer for > 10 years now.
-He can't operate the over timer anymore…we've had this oven for almost 20 years.
-He will sit and mutter to himself for several minutes at a time, shaking…almost like an autistic kid.
-He can hardly make a sandwich or a bowl of cereal for himself anymore
-His short term memory is shot and he will ask me the same question 10 times a day
-He is having a harder and harder time keeping up with even a simple conversation or TV show.
-He is having much more trouble walking and balancing, even with his cane
-He can't take his parrot out and about anymore…he's too tired, too lame and afraid to leave the house
-And on and on…
Now, some of these things (and worse) have happened before, but what is so striking is the change in the past year. And that decline is accelerating. Even though he does have his lucid and cogent moments, he is becoming physically lamer and cognitively much slower. And, I don't know how else to describe it, but his personality is fading and his emotional range is shrinking.
Doctors tell me that he is in a decline, where we will lose him "inch by inch," maybe faster. The can't predict his death (besides, we've all heard those predictions many times), but they do say that he is heading towards "general disability," which means the inability to do anything. Much like what happens to Alzheimer's patients.
Based on what I'm seeing and what the doctors tell me, the reality of it is that H is not going to get any better than he is right now and he will most certainly continue to decline.
My recommendation to all of you is to find a way to spend as much time with H as you can within the next year or so.
Much love,
asm
Here's the text of that email (kinda long, apologies). In a future post, I'll give y'all a rundown of their reply.
Beloved family,
I hope that I have all your correct email addresses here….
I wanted to give you all a private update on how H is doing. Please don’t forward this email to H as I don’t want to have him worry unnecessarily or hurt his feelings.
Please don't worry, I'm not wanting to "put him somewhere" right now, nor is he having any acute health issues right now. And, I'm not trying to frighten you or request any action from you.
I'm telling you this because I know that we all love H and you need to know what is happening.
What I am seeing is a continuation and acceleration of his general physical and mental decline, especially compared to a year ago. Many of our long-time friends see this too and have told me their stories.
His HIV viral load has been down this year (in spite of now being off his anti-virals) and his T-cell count is normal for a man his age (highest that it's been in a decade or more). Usually, when his viral load is down, he does better physically and mentally, but not this time. He'll get another blood test next month.
His doctor has told me that they can control his virus, but his dementia will get worse. And it is:
-He can't operate the washing machine any more…he gets confused by the dial and what to do. We've had this washer for > 10 years now.
-He can't operate the over timer anymore…we've had this oven for almost 20 years.
-He will sit and mutter to himself for several minutes at a time, shaking…almost like an autistic kid.
-He can hardly make a sandwich or a bowl of cereal for himself anymore
-His short term memory is shot and he will ask me the same question 10 times a day
-He is having a harder and harder time keeping up with even a simple conversation or TV show.
-He is having much more trouble walking and balancing, even with his cane
-He can't take his parrot out and about anymore…he's too tired, too lame and afraid to leave the house
-And on and on…
Now, some of these things (and worse) have happened before, but what is so striking is the change in the past year. And that decline is accelerating. Even though he does have his lucid and cogent moments, he is becoming physically lamer and cognitively much slower. And, I don't know how else to describe it, but his personality is fading and his emotional range is shrinking.
Doctors tell me that he is in a decline, where we will lose him "inch by inch," maybe faster. The can't predict his death (besides, we've all heard those predictions many times), but they do say that he is heading towards "general disability," which means the inability to do anything. Much like what happens to Alzheimer's patients.
Based on what I'm seeing and what the doctors tell me, the reality of it is that H is not going to get any better than he is right now and he will most certainly continue to decline.
My recommendation to all of you is to find a way to spend as much time with H as you can within the next year or so.
Much love,
asm
Friday, April 03, 2009
Weekdays of clarity
I haven't had a drink since last weekend and I'm amazed at how clear I'm thinking; people ahead of me in the treatment program say that thinking continues to improve for a long time.
Work is easier, my quick wit (we can debate how funny it is) is returning, and I'm realizing just how much I love H in spite of it all. And a little support from H and our family goes a long way in helping me feel better too.
I also realize just how impaired H is - not just in the "big" things, like not being able to cook a meal - but in small things, like tracking a simple conversation, mumbling half the words in a sentence, or struggling to wash a pan because "no matter how much I wash it, it just feels oily." (It wasn't.)
Weekday schedule now is work 8 - 5 & intensive outpatient treatment (group therapy) 6 - 9:30. Throw in physical therapy and psychotherapy once a week each and 2 AA meetings a week and I'm max'd out. Too much therapy if you ask me…. And just for fun, I'm getting a cold too.
Happily, sister and nieces are cooking for H and he likes seeing them and they love to spend time with him. And a nurse is now coming in to manage meds for H.
Nice to have some relief so that I can take care of myself.
But best of all is that my anger towards H is diminishing in a big way and I'm able to be more patient and kind. I simply don’t have the hostility towards him that I've felt in the past…even when I'm exhausted and he's being, well, his impaired self.
And for all of this I am very, very grateful.
Work is easier, my quick wit (we can debate how funny it is) is returning, and I'm realizing just how much I love H in spite of it all. And a little support from H and our family goes a long way in helping me feel better too.
I also realize just how impaired H is - not just in the "big" things, like not being able to cook a meal - but in small things, like tracking a simple conversation, mumbling half the words in a sentence, or struggling to wash a pan because "no matter how much I wash it, it just feels oily." (It wasn't.)
Weekday schedule now is work 8 - 5 & intensive outpatient treatment (group therapy) 6 - 9:30. Throw in physical therapy and psychotherapy once a week each and 2 AA meetings a week and I'm max'd out. Too much therapy if you ask me…. And just for fun, I'm getting a cold too.
Happily, sister and nieces are cooking for H and he likes seeing them and they love to spend time with him. And a nurse is now coming in to manage meds for H.
Nice to have some relief so that I can take care of myself.
But best of all is that my anger towards H is diminishing in a big way and I'm able to be more patient and kind. I simply don’t have the hostility towards him that I've felt in the past…even when I'm exhausted and he's being, well, his impaired self.
And for all of this I am very, very grateful.
Monday, March 23, 2009
H's support
Over the past week or so, I've been consciously reducing the amount that I drink in prep for stopping entirely. Now, I know that I have to stop, but I'm hoping to manage down the withdrawal just a bit.
A week from tomorrow I start my evening sessions and no later than that day, I have to stop drinking.
So, I've cut down from 8+/day to 6 to 4, etc. over the past week. This has been surprisingly hard. And now I get cravings by 10am every day, earlier than my usual, "It's 3 o'clock…where's my beer?"
H has been helping me stay within my limits. We count out how many I get and whatever is extra gets hidden. And I don't start drinking until 5pm.
Now, I'm not keen on putting H in the role of policeman, but it's something he can do to help for the next week or two and he is more than willing to do so. And I both appreciate and need the support right now.
In fact, we discussed H going to AZ to visit his sister during this time. His sister suggested it in fact…wanting to be helpful and supportive.
I said, "No because I don't know that I trust myself to not drink and so I could really use your support.
H said, "I don't trust you to not drink either."
And while I've been whining here about H not being there for me, this is one area where he can be. And for that I am very grateful.
A week from tomorrow I start my evening sessions and no later than that day, I have to stop drinking.
So, I've cut down from 8+/day to 6 to 4, etc. over the past week. This has been surprisingly hard. And now I get cravings by 10am every day, earlier than my usual, "It's 3 o'clock…where's my beer?"
H has been helping me stay within my limits. We count out how many I get and whatever is extra gets hidden. And I don't start drinking until 5pm.
Now, I'm not keen on putting H in the role of policeman, but it's something he can do to help for the next week or two and he is more than willing to do so. And I both appreciate and need the support right now.
In fact, we discussed H going to AZ to visit his sister during this time. His sister suggested it in fact…wanting to be helpful and supportive.
I said, "No because I don't know that I trust myself to not drink and so I could really use your support.
H said, "I don't trust you to not drink either."
And while I've been whining here about H not being there for me, this is one area where he can be. And for that I am very grateful.
Friday, March 20, 2009
Confirmation
Got an assessment at a treatment center. "Yes, you're an alcoholic." Thought so. I'm starting outpatient treatment the week after next.
Getting some help, family stepping up. "I'm here for both of you," his sister who lives locally says. They will help with dinners while I'm gone.
"I'm sorry that my illness makes you drink, " H says.
I say, looking him square in the eye, "Thank you, but don't blame yourself. I have to take responsibility for this."
Talked with a nurse today about help with meds, which should start in the next week or so. "…you're losing him inch by inch, it's a chronic condition with a slow decline."
Getting some help, family stepping up. "I'm here for both of you," his sister who lives locally says. They will help with dinners while I'm gone.
"I'm sorry that my illness makes you drink, " H says.
I say, looking him square in the eye, "Thank you, but don't blame yourself. I have to take responsibility for this."
Talked with a nurse today about help with meds, which should start in the next week or so. "…you're losing him inch by inch, it's a chronic condition with a slow decline."
Wednesday, March 04, 2009
Family time
Last weekend was a big b-day bash for a family member who turned 50 (no, not me…yet!).
It was frustrating for H because his sister and her family came into town for the event and he didn't get to spend as much time with them as he would have liked.
I had a wonderful time with them all and my worries about getting grief were happily unfounded. What was even better was that we only had a moment to talk about H because there was so much going on. Nice to not have the focus on him so much.
What was most striking tho' was when I told his sister, "You know, (sister's name), I love H and I'm doing the best I can. I know how unhappy he is."
She starts getting teary-eyed. Me too.
Whatever tension was in the air due to the placement fracas last Fall vanished.
She said, "I wish I could fix his attitude. He's so angry and negative. He's pissed at you, mom & dad, me, everyone, the world."
"Me too," I said. "But who can blame him? He's not even 50 yet, but he's losing his mind, his health, everything. And mostly, (sister's endearing nick-name), he's just tired, very tired."
It was frustrating for H because his sister and her family came into town for the event and he didn't get to spend as much time with them as he would have liked.
I had a wonderful time with them all and my worries about getting grief were happily unfounded. What was even better was that we only had a moment to talk about H because there was so much going on. Nice to not have the focus on him so much.
What was most striking tho' was when I told his sister, "You know, (sister's name), I love H and I'm doing the best I can. I know how unhappy he is."
She starts getting teary-eyed. Me too.
Whatever tension was in the air due to the placement fracas last Fall vanished.
She said, "I wish I could fix his attitude. He's so angry and negative. He's pissed at you, mom & dad, me, everyone, the world."
"Me too," I said. "But who can blame him? He's not even 50 yet, but he's losing his mind, his health, everything. And mostly, (sister's endearing nick-name), he's just tired, very tired."
Tuesday, February 24, 2009
Being the bearer
H's sister and her family are coming to town this weekend for a family birthday bash. (H's parents are not coming to town, which is AOK.) I haven't seen his sister in about 4 years…last time she came up to see H because we were told that he was going to die in 6 months. But, another anti-viral med came out and pulled him back.
But the past year or so has been strained with his family because I moved so aggressively to place him last year.
Because they're not local, they don't see how H is really doing except when he goes to visit once a year or so…like he did last Thanksgiving. And he tends to put on a good show for them, although "he does sleep a lot."
As is the case with H, whenever I raise the issue of my burnout (e.g., my experience), their response is that this means divorce and they get all discounting and accusatory on my ass. Really, what I'd like would be some support and sympathy, but they can't seem to muster it and neither can H.
So, I'm not certain what to expect when they're all in town again.
I guess that no matter how I play it, I am the bad guy. And I just need to accept that. After all, I'm the one who struggles to deal and if I can't, then they are terrified that they will have to step up.
The only way I know how to play it is to tell my truth and if they start to get surly and I feel defensive, I'll just tell them that I love H and I’m doing the best I can…and then just walk away.
My biggest challenge is to approach the time with them with an open mind (& heart!) and not have any expectations. But right now, I find that rather daunting.
But the past year or so has been strained with his family because I moved so aggressively to place him last year.
Because they're not local, they don't see how H is really doing except when he goes to visit once a year or so…like he did last Thanksgiving. And he tends to put on a good show for them, although "he does sleep a lot."
As is the case with H, whenever I raise the issue of my burnout (e.g., my experience), their response is that this means divorce and they get all discounting and accusatory on my ass. Really, what I'd like would be some support and sympathy, but they can't seem to muster it and neither can H.
So, I'm not certain what to expect when they're all in town again.
I guess that no matter how I play it, I am the bad guy. And I just need to accept that. After all, I'm the one who struggles to deal and if I can't, then they are terrified that they will have to step up.
The only way I know how to play it is to tell my truth and if they start to get surly and I feel defensive, I'll just tell them that I love H and I’m doing the best I can…and then just walk away.
My biggest challenge is to approach the time with them with an open mind (& heart!) and not have any expectations. But right now, I find that rather daunting.
Tuesday, December 09, 2008
Burnout = divorce
During dinner last night, I was chatting with H and he was after me for my "flat, sarcastic delivery" about how much Christmas costs every year and how I'm trying to manage that down for this year.
I said that I didn't mean to be sarcastic, but I'm just tired and burned out.
He looks at me intently and says, "Well, we should just get a divorce." And he goes on from there about an attorney, selling the house, whatever....blah, blah, blah.
I said in a flat, tho', not sarcastic voice, "Well, if that's what you want." Truth be told, at least this would be one way out of this mess.
He flies into another tirade about something related to whatever, whereby I get up from the dining room table and walk away.
What's striking to me is that this is the same M.O. that his family has: whenever I raise my experience and my struggles with caring for H, I get the consistent comment, (sigh) "Well, I guess that means divorce then."
While I understand that no one in the family will take H, what I don't understand is how little empathy there is for my struggles caring for him.
Why is it that saying something is hard for me causes these folks to jump to divorce?
Perhaps this is all just their guilt, but I think that the motives are much more pedestrian: money. They all know that I support H and without me, who will or can? If it's labelled divorce, then maybe he or they get a settlement?
Later in the evening, H is all mopey and affectionate. After a bit of TV, I go off to bed in the guest room.
At this point, I have to confess that I don't care much anymore, really.
I said that I didn't mean to be sarcastic, but I'm just tired and burned out.
He looks at me intently and says, "Well, we should just get a divorce." And he goes on from there about an attorney, selling the house, whatever....blah, blah, blah.
I said in a flat, tho', not sarcastic voice, "Well, if that's what you want." Truth be told, at least this would be one way out of this mess.
He flies into another tirade about something related to whatever, whereby I get up from the dining room table and walk away.
What's striking to me is that this is the same M.O. that his family has: whenever I raise my experience and my struggles with caring for H, I get the consistent comment, (sigh) "Well, I guess that means divorce then."
While I understand that no one in the family will take H, what I don't understand is how little empathy there is for my struggles caring for him.
Why is it that saying something is hard for me causes these folks to jump to divorce?
Perhaps this is all just their guilt, but I think that the motives are much more pedestrian: money. They all know that I support H and without me, who will or can? If it's labelled divorce, then maybe he or they get a settlement?
Later in the evening, H is all mopey and affectionate. After a bit of TV, I go off to bed in the guest room.
At this point, I have to confess that I don't care much anymore, really.
Monday, December 31, 2007
3 goals, just 3 seemingly impossible goals
More visits from friends over the holidays. Our long-term friends give me the benefit of the doubt and want to have a conversation with me about where H is at. Those who see H regularly are very worried about him and see what I see. Those who don't are wondering WTF?
And so I am bringing some of them up to speed with my 3 goals and let's be realistic, he's dying…slowly. Yup, new meds…who knows how long. Been here before…death's doorstep and then a magic recovery. I will believe it when I see it.
And so I am bringing some of them up to speed with my 3 goals and let's be realistic, he's dying…slowly. Yup, new meds…who knows how long. Been here before…death's doorstep and then a magic recovery. I will believe it when I see it.
My three goals are to do the best I can to ensure:
- His well being, so that he gets the medical and mental health care that he needs (as well as the practical things, like food and shelter)
-My well being, so that I can work and be emotionally more stable that I've been (maybe even find a way to enjoy life again)
-The well being of our relationship (I am rapidly giving up that there is any hope here at all and it breaks my heart)
I don't see how to solve the equation for all three goals here. Solving for one of these is hard enough. Right now, I can't seem to figure out how to address any of these.
In any case, it is just more of the same: more drama, more drama and I don't get a benefit from it. And it's all drama that gets in the way of me doing what I need to do so that my life works for me.
Issues about H consume my life (there is so much to do and so little payback), my emotional energy, and dare I say even my well being. My choices are to try to minimize what it costs me (in some way that I don't understand) while he is still here, get him placed (hope waning now), divorce him or him me, or just disappear, which seems remarkably appealing at this moment.
Regardless of how this plays out, I do know that I am done having this cost me so much, but I don't know what to do about that. I wish that I could just make it stop.
Friday, December 28, 2007
Hey, come take a look at this
A good friend of ours, M, came over for a visit and dinner tonight. She has known H and me since the early 80's. It was so wonderful to spend an evening with her.
H felt too ill to be up for very long and went to take a nap for a few hours.
M and I talked about where H is and what has been going on for the past few months. I assumed that H had told her what was going on, but she had no idea what was happening with the whole placement issue, his family's reaction, and my break from work. She did say that H had told her that he hadn't been feeling all that well recently (not news).
I really needed her support after being kicked (while down) by H's family, and, since I've known her for a long time, I trust her judgment. She and H had spent a fair amount of time together recently and she had stories about some odd behavior and some even odder delusions. She expressed a lot of concern about H's decline the past year or so. Yup, I see it too. I'm worried and sad too.
I was talking with her about H's family reactions to placement and all that, about how they think he is fine and able to live on his own. I was relieved to hear her say, "But he is dying, they just don't see it. It's just taking awhile and they don't see him reguarly and he tells them that he is OK, but we know he's not."
Yes. Thank you so much for your honesty and especially your courage, my friend.
I talked with her about my struggles to handle this with love for H and gather his family around him. But instead I get denial and guilt. So, I told her that instead of me worrying about his family anymore, I'm just going to focus on me and doing the right thing for H. They will either come around or not.
She had a great idea: since his family is unaware of how he really is doing all of the time, I should send out a weekly or so email that briefly outlines how he is doing. How much he's been sleeping, how he's functioning, and when necessary, lab results, any special events that happen.
I'm going to try this, but I have to hard sell this to myself as just trying to improve communication with his family…even tho' I'm still steamed at them. M's take is that after a few months of this email newsletter, their denial may begin to crack. Who knows.
I've written about forgiveness being essential…and here is a lesson for me too. I need to forgive them for their anger, guilt, and fear (I have these too) and help them see what is happening with H. And to get them to the table to talk about where H really is and how to be there for him as he makes this transition, whenever that happens.
H felt too ill to be up for very long and went to take a nap for a few hours.
M and I talked about where H is and what has been going on for the past few months. I assumed that H had told her what was going on, but she had no idea what was happening with the whole placement issue, his family's reaction, and my break from work. She did say that H had told her that he hadn't been feeling all that well recently (not news).
I really needed her support after being kicked (while down) by H's family, and, since I've known her for a long time, I trust her judgment. She and H had spent a fair amount of time together recently and she had stories about some odd behavior and some even odder delusions. She expressed a lot of concern about H's decline the past year or so. Yup, I see it too. I'm worried and sad too.
I was talking with her about H's family reactions to placement and all that, about how they think he is fine and able to live on his own. I was relieved to hear her say, "But he is dying, they just don't see it. It's just taking awhile and they don't see him reguarly and he tells them that he is OK, but we know he's not."
Yes. Thank you so much for your honesty and especially your courage, my friend.
I talked with her about my struggles to handle this with love for H and gather his family around him. But instead I get denial and guilt. So, I told her that instead of me worrying about his family anymore, I'm just going to focus on me and doing the right thing for H. They will either come around or not.
She had a great idea: since his family is unaware of how he really is doing all of the time, I should send out a weekly or so email that briefly outlines how he is doing. How much he's been sleeping, how he's functioning, and when necessary, lab results, any special events that happen.
I'm going to try this, but I have to hard sell this to myself as just trying to improve communication with his family…even tho' I'm still steamed at them. M's take is that after a few months of this email newsletter, their denial may begin to crack. Who knows.
I've written about forgiveness being essential…and here is a lesson for me too. I need to forgive them for their anger, guilt, and fear (I have these too) and help them see what is happening with H. And to get them to the table to talk about where H really is and how to be there for him as he makes this transition, whenever that happens.
Wednesday, December 05, 2007
Do you see what I see?
While H's family may not see what I see, in many ways, it doesn't really matter. They are just playing out a script that they have: it can't be H's health…our son/brother is not dying…it must be you, (a single man's name). They equate me trying to address "he needs more care (really), I need to focus on work, and our relationship is suffering" with divorce.
Ironic that they equate my efforts to help H and me as me wanting to divorce him. Such BS.
H was gone for a few weeks and had been home for about the same when the seizures started again.
Petit mal seizures this time; they got the grand mal seizures under control (finally) about a year or so ago, but he still has minor episodes. They start with just his hand, then his mouth…after a few days, he could not really use his hand, eat without drooling, or even walk down the hallway WITH HIS CANE without bouncing a few times off the walls. And each day he got more and more confused…seen this all before.
We've seen his neurologist, who says, "I don’t know what to do if upping his current meds don't work," in spite of him being one of the top guys in his field in this area. We'll talk with him again tomorrow.
Good news is that H's seizure episode seems to be winding down, but he sleeps even more now with double his regular neuro med dosages.
I find the irony delicious that after H's family told me "he's fine (sic)," H has had another unfortunate episode, which has rendered him unable to care for himself much the past few days (e.g., usually he can dress himself, but I've needed to help him this week). Likely, it will take another week or two for him to bounce back…even so, it seems that with each seizure episode, even "small" ones, he loses ground overall.
I must say that one of H's sisters has been very understanding and supportive. She is the only one of the nuclear family set that hasn't gone on the attack, questioning my judgment, experience, and motives.
The sad thing is that if H and his family don't support me in my efforts to address this situation (instead of denying it further), I may need to actually do a divorce just to get him the care he needs while also saving myself. So much for trying to improve our relationship for the time he has left.
Just one of those great self-fulfilling prophecies…then I really can be the bad guy for the conspiracy theorists.
Ironic that they equate my efforts to help H and me as me wanting to divorce him. Such BS.
H was gone for a few weeks and had been home for about the same when the seizures started again.
Petit mal seizures this time; they got the grand mal seizures under control (finally) about a year or so ago, but he still has minor episodes. They start with just his hand, then his mouth…after a few days, he could not really use his hand, eat without drooling, or even walk down the hallway WITH HIS CANE without bouncing a few times off the walls. And each day he got more and more confused…seen this all before.
We've seen his neurologist, who says, "I don’t know what to do if upping his current meds don't work," in spite of him being one of the top guys in his field in this area. We'll talk with him again tomorrow.
Good news is that H's seizure episode seems to be winding down, but he sleeps even more now with double his regular neuro med dosages.
I find the irony delicious that after H's family told me "he's fine (sic)," H has had another unfortunate episode, which has rendered him unable to care for himself much the past few days (e.g., usually he can dress himself, but I've needed to help him this week). Likely, it will take another week or two for him to bounce back…even so, it seems that with each seizure episode, even "small" ones, he loses ground overall.
I must say that one of H's sisters has been very understanding and supportive. She is the only one of the nuclear family set that hasn't gone on the attack, questioning my judgment, experience, and motives.
The sad thing is that if H and his family don't support me in my efforts to address this situation (instead of denying it further), I may need to actually do a divorce just to get him the care he needs while also saving myself. So much for trying to improve our relationship for the time he has left.
Just one of those great self-fulfilling prophecies…then I really can be the bad guy for the conspiracy theorists.
Saturday, November 17, 2007
And now, marriage counselling
While I'm pretty well-rested at this point, I'm awfully puzzled and annoyed.
Had a long conversation with H's mom yesterday about what is happening here. But, they haven't seen any evidence of his dementia worsening, she tells me, other than he's a bit slow. Now, she's been there all of one day and H has only been at his sister's for two weeks now. Apparently, he's cooking his own meals, but "he does sleep a lot."
I explained how when I've raised placement with H before that he gets all energetic, cleans and polishes, but that this isn't sustainable and that he will poop out and crash after awhile.
Suffice to say that there is a difference between what they've seen and what I've seen. And what is that difference attributable to?
Simple: H is afraid.
She did use the divorce word again and once again I asked her not to use it because it isn't helpful. And it isn't true, besides. How is it that I struggle do this anymore is divorce?
She suggested marriage counseling. We did that 5 years ago, I say. The net was that yup, it's a hard situation and that what love we have for one another is slowly being destroyed by circumstance. Advice at that time was to get out before you end up hating one another.
We'll see how it goes when H gets back this afternoon.
Sheesh….I am so tired of having a drama about my sick partner (again). I so enjoyed the brief respite that I had.
Had a long conversation with H's mom yesterday about what is happening here. But, they haven't seen any evidence of his dementia worsening, she tells me, other than he's a bit slow. Now, she's been there all of one day and H has only been at his sister's for two weeks now. Apparently, he's cooking his own meals, but "he does sleep a lot."
I explained how when I've raised placement with H before that he gets all energetic, cleans and polishes, but that this isn't sustainable and that he will poop out and crash after awhile.
Suffice to say that there is a difference between what they've seen and what I've seen. And what is that difference attributable to?
Simple: H is afraid.
She did use the divorce word again and once again I asked her not to use it because it isn't helpful. And it isn't true, besides. How is it that I struggle do this anymore is divorce?
She suggested marriage counseling. We did that 5 years ago, I say. The net was that yup, it's a hard situation and that what love we have for one another is slowly being destroyed by circumstance. Advice at that time was to get out before you end up hating one another.
We'll see how it goes when H gets back this afternoon.
Sheesh….I am so tired of having a drama about my sick partner (again). I so enjoyed the brief respite that I had.
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