I keep circling back to the notion that all suffering is caused by not accepting what is.
Case in point...I've been sick twice in the past two months, first with an awful 24 hour flu and just this weekend, a nasty head cold.
Now, I'm usually am sick maybe once a year with a cold. But two times in two months got me thinking.
When I look back at the last two months, what do I see?
Stress, anger, resentment, just generally being in a foul mood and being unhappy. Anger at H and what I'm missing and I have to deal with. A bunch of crazy stuff at work that I get all riled up about. Negative voices in my head telling me just how f*'d up this all is.
Now, the trick is to accept reality as my facts and circumstances...some things I can change, some I can't (hopefully, I can tell the difference).
I can't change H and I can't really change work (much). All I can do is resist or accept reality.
Granted, I may not like what is happening, but fighting it and being all pissed off just hurts me.
Monday, February 21, 2011
Monday, February 07, 2011
Wanna see something really scary?
For the first time in a long time, H told me that he was frightened last night.
I had asked him a few days ago if he was afraid about the upcoming MRI...he said, "nothing frightens me anymore." Now, I didn't believe it.
But last night, with tears in his eyes he said, "(asm's endearing nick name), I'm afraid of what the MRI will show."
"I know, honey," I said. "I am too. But let's find out what the story is, first."
He continues, "I mean...I know I'm slipping, but I don't want to know why or what is causing it."
I just held him while he sobbed and told him that I love him. What else can you do?
I wish I could tell him that it will be OK and that there's nothing to worry about. But I don't believe that is true. Well, maybe it's true, but my hope has waned with his health.
As much as I desire to be free from my burden and desire him to be free of his, it's getting from here to there that is terrifying. And seeing him afraid is very hard.
H continues to have dreams where he can't find his cane or his car. He's half-naked and looking for a way home, but without his cane or car, he can't start the trip home, but he knows he has to get there somehow.
I had asked him a few days ago if he was afraid about the upcoming MRI...he said, "nothing frightens me anymore." Now, I didn't believe it.
But last night, with tears in his eyes he said, "(asm's endearing nick name), I'm afraid of what the MRI will show."
"I know, honey," I said. "I am too. But let's find out what the story is, first."
He continues, "I mean...I know I'm slipping, but I don't want to know why or what is causing it."
I just held him while he sobbed and told him that I love him. What else can you do?
I wish I could tell him that it will be OK and that there's nothing to worry about. But I don't believe that is true. Well, maybe it's true, but my hope has waned with his health.
As much as I desire to be free from my burden and desire him to be free of his, it's getting from here to there that is terrifying. And seeing him afraid is very hard.
H continues to have dreams where he can't find his cane or his car. He's half-naked and looking for a way home, but without his cane or car, he can't start the trip home, but he knows he has to get there somehow.
Labels:
decline,
fear,
my poor sweetheart
Friday, February 04, 2011
Dopa, dopa
H's neurologist thinks that his shaking may be caused by damage to the cerebellum, the part of the brain that produces dopamine. So, will try some Parkinson's meds to see if it helps him. And an MRI next week to see what's going on inside. Most likely, more brain damage from the virus, Dr tell us. H's other neurological symptoms are progressing as well.
Why I sleep so much
I asked him recently how he deals with all this: his failing health, being homebound, feedling sick all the time and in pain (I was more diplomatic and sensitive about it when I said it, of course). He said that is why he wants to sleep so much, so he can escape the pain, feeling sick, and despair about his condition.
Finally, I'm getting him to talk about these issues and he's not defensive or angry about it. Finally, I think that he is moving towards (some) acceptance of his situation, even tho' he doesn't like it.
The thing that is hardest about this for me is that I know he is tired, I know that he is hurting, and I know that his will to keep going on is fading. His will has always pulled him through his health challenges, but he is tired of fighting. But, of course, there's nothing I can do about any of that except help him and love him, which somehow doesn't seem enough.
I wish I could kiss him and make him better, but I can't (well, I can kiss him anyway).
Fun and fun
Last night I was tired and cranky. I told H that between him (5 trips to the pharmacy and 2 Dr. appts. this week), the pets, the house, and my job...all I do is work and I'm tired of it.
I appreciate that H didn't judge or wasn't defensive, but said, "I know that this is hard for you. Of course you're tired."
I know that need to get out and have fun. OK. Right now, I don't even know what might be fun any more. Now, not trying to be all morose or anything, but after all this time, the only thing that seems fun anymore is to start drinking and smoking again (which I won't).
That isn't fun...that is addictive behavior to escape.
H's neurologist thinks that his shaking may be caused by damage to the cerebellum, the part of the brain that produces dopamine. So, will try some Parkinson's meds to see if it helps him. And an MRI next week to see what's going on inside. Most likely, more brain damage from the virus, Dr tell us. H's other neurological symptoms are progressing as well.
Why I sleep so much
I asked him recently how he deals with all this: his failing health, being homebound, feedling sick all the time and in pain (I was more diplomatic and sensitive about it when I said it, of course). He said that is why he wants to sleep so much, so he can escape the pain, feeling sick, and despair about his condition.
Finally, I'm getting him to talk about these issues and he's not defensive or angry about it. Finally, I think that he is moving towards (some) acceptance of his situation, even tho' he doesn't like it.
The thing that is hardest about this for me is that I know he is tired, I know that he is hurting, and I know that his will to keep going on is fading. His will has always pulled him through his health challenges, but he is tired of fighting. But, of course, there's nothing I can do about any of that except help him and love him, which somehow doesn't seem enough.
I wish I could kiss him and make him better, but I can't (well, I can kiss him anyway).
Fun and fun
Last night I was tired and cranky. I told H that between him (5 trips to the pharmacy and 2 Dr. appts. this week), the pets, the house, and my job...all I do is work and I'm tired of it.
I appreciate that H didn't judge or wasn't defensive, but said, "I know that this is hard for you. Of course you're tired."
I know that need to get out and have fun. OK. Right now, I don't even know what might be fun any more. Now, not trying to be all morose or anything, but after all this time, the only thing that seems fun anymore is to start drinking and smoking again (which I won't).
That isn't fun...that is addictive behavior to escape.
Labels:
acceptance,
decline,
my poor sweetheart
Monday, January 24, 2011
A trio of snippets
Another sick one in the house
Our remaining cat (we've lost two in the last year or so to a feline virus/cancer) now has a tumor on her belly. Sigh. More sickness in our house. We'll find out in a few days what's the deal.
We were told that it's likely she'll get sick as all of the other ones died of cancer and there is a virus in the house (well, two really).
So much sickness in the house. Sigh.
Can't be bothered
The other night, H and I were talking about how he's doin' (sometimes a touchy topic). I commented that the past few months have been hard on him and that he's sleeping more and more.
"Well, I only sleep so much because you don't want to be with me, you pressure me to go to bed, we're slipping apart, you won't have sex with me…" H says.
Me, I just sit there and don't say anything, not really feeling like I need to say anything for several minutes. No point in engaging as he won't understand and it will just lead to more ill will.
Nice not to be angry or defensive...just let it wash over me.
Lotta shakin'
H's hands are shaking more and more...a result of damage to his CNS by the virus. H did some homework on this and found out more about the progression of HIV dementia and what it means.
"Will I really turn into a vegetable?" he asks me.
"I hope not, honey; I hope not."
Our remaining cat (we've lost two in the last year or so to a feline virus/cancer) now has a tumor on her belly. Sigh. More sickness in our house. We'll find out in a few days what's the deal.
We were told that it's likely she'll get sick as all of the other ones died of cancer and there is a virus in the house (well, two really).
So much sickness in the house. Sigh.
Can't be bothered
The other night, H and I were talking about how he's doin' (sometimes a touchy topic). I commented that the past few months have been hard on him and that he's sleeping more and more.
"Well, I only sleep so much because you don't want to be with me, you pressure me to go to bed, we're slipping apart, you won't have sex with me…" H says.
Me, I just sit there and don't say anything, not really feeling like I need to say anything for several minutes. No point in engaging as he won't understand and it will just lead to more ill will.
Nice not to be angry or defensive...just let it wash over me.
Lotta shakin'
H's hands are shaking more and more...a result of damage to his CNS by the virus. H did some homework on this and found out more about the progression of HIV dementia and what it means.
"Will I really turn into a vegetable?" he asks me.
"I hope not, honey; I hope not."
Labels:
acceptance,
caregiving,
decline
Thursday, January 13, 2011
Two 2011 snippets
Happy New Year to my gentle readers.
I'm still alive and kicking out West. H is stable, which is a nice change. And I'm spending more and more time at work…and less and less time at home, which is preferred.
What to say?
On a typical day, H will complain repetitively about:
How sick he feels, how tired he is, how much pain he is in
How he hates taking his meds
How his dad disappointed him and has made stupid choices
How his mom was an emotionally abusive monster (she was)
How he doesn't get his needs met at home (from me)
How he is frustrated that he spends so much time in bed
How he is disappointed that he will never go on an international trip (Australia in particular)
How he is frustrated that he can't do what he used to do
And the only response I can muster to the repetitive sad state he's in is, "I'm sorry, honey," or "It was a long time ago" or "that must be frustrating or disappointing."
Thing is, I want to make him feel better, but I really can't. And I know that just being here is a help for him...to act as a witness to his life and feelings. But, sheesh, it is sad for me to see his pain and sadness and loss of hope, knowing that not only is there no way for me to fix it, but also that there is little likelihood that he can as well.
Acceptance is really, really hard.
This rock, again?
Poor Sisyphus...pushing that same rock up the hill, only to have to do it all over again. Can he choose another rock or another hill? Can he just decide not to push it up the hill? If he doesn't push it up the hill, is life worth living? (Apologies to Camus.)
Me, I've decided to just polish up my rock so at least it is purdy.
I'm still alive and kicking out West. H is stable, which is a nice change. And I'm spending more and more time at work…and less and less time at home, which is preferred.
What to say?
On a typical day, H will complain repetitively about:
How sick he feels, how tired he is, how much pain he is in
How he hates taking his meds
How his dad disappointed him and has made stupid choices
How his mom was an emotionally abusive monster (she was)
How he doesn't get his needs met at home (from me)
How he is frustrated that he spends so much time in bed
How he is disappointed that he will never go on an international trip (Australia in particular)
How he is frustrated that he can't do what he used to do
And the only response I can muster to the repetitive sad state he's in is, "I'm sorry, honey," or "It was a long time ago" or "that must be frustrating or disappointing."
Thing is, I want to make him feel better, but I really can't. And I know that just being here is a help for him...to act as a witness to his life and feelings. But, sheesh, it is sad for me to see his pain and sadness and loss of hope, knowing that not only is there no way for me to fix it, but also that there is little likelihood that he can as well.
Acceptance is really, really hard.
This rock, again?
Poor Sisyphus...pushing that same rock up the hill, only to have to do it all over again. Can he choose another rock or another hill? Can he just decide not to push it up the hill? If he doesn't push it up the hill, is life worth living? (Apologies to Camus.)
Me, I've decided to just polish up my rock so at least it is purdy.
Labels:
acceptance,
caregiving,
my poor sweetheart
Monday, December 06, 2010
All H, all the time
Well, I'm trying to give y'all a more balanced view, as not all is bad in my world (although incredibly crazy)...but you know, it is still bleak with H. In many ways, my crazy job is a respite from my caregiving and issues at home. And for that I am glad that I have a distraction.
It just seems that there is always a health crisis/issue with H these days...if it isn't one thing it's another. He's lost 30 lbs due to GI distress, had to have his gallbladder taken out, has had major issues with obtaining some meds, a whole pile of stupid Dr.-related stuff, and serious side effects from some new meds.
Latest is that his virologist is in collusion with his pain Dr. to reduce the amount of pain meds H is on. The pain Dr. upped and upped his pain meds until she talked with his virologist. Now, everyone's in an uproar again.
It nets out to, I work and I deal with his health issues.
Even after having his gallbladder removed, he's not really eating much...even his favorite cinnamon rolls sit on the counter uneaten. And he still sleeps almost all of the time. So, he can't even make a sandwich for himself and won't eat what I leave for him.
I talked with him about how we might need to have someone come in during the day and make certain he eats. He thought it "ridiculous" that someone has to "babysit" him. I told him that Drs have told me to expect that at some point he will not be able to do some aspect of daily living activities and that he will need help.
H said, "Yea, OK, I know that is where I'm headed. I'm sorry. I love you (asm's endearing pet name)."
"I love you too, H."
It just seems that there is always a health crisis/issue with H these days...if it isn't one thing it's another. He's lost 30 lbs due to GI distress, had to have his gallbladder taken out, has had major issues with obtaining some meds, a whole pile of stupid Dr.-related stuff, and serious side effects from some new meds.
Latest is that his virologist is in collusion with his pain Dr. to reduce the amount of pain meds H is on. The pain Dr. upped and upped his pain meds until she talked with his virologist. Now, everyone's in an uproar again.
It nets out to, I work and I deal with his health issues.
Even after having his gallbladder removed, he's not really eating much...even his favorite cinnamon rolls sit on the counter uneaten. And he still sleeps almost all of the time. So, he can't even make a sandwich for himself and won't eat what I leave for him.
I talked with him about how we might need to have someone come in during the day and make certain he eats. He thought it "ridiculous" that someone has to "babysit" him. I told him that Drs have told me to expect that at some point he will not be able to do some aspect of daily living activities and that he will need help.
H said, "Yea, OK, I know that is where I'm headed. I'm sorry. I love you (asm's endearing pet name)."
"I love you too, H."
Labels:
caregiving,
decline,
our love
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."
Thursday, October 07, 2010
This wonderful feeling
In spite of it all, H and I are better together these days.
Maybe it's that the medical stuff is so routine now...even with new issues... or we've reached some type of détente in our expectations for one another. Or maybe we're both getting closer to acceptance. But on occasion and more regularly, that gentle fondness is there in the forefront and we talk, laugh, and playfully joke with bad puns...just like before.
Oh, and I finally told H just how lonely I am given that he sleeps so much and that I'm tired of being in our house alone...I just have to get out, which disturbed him greatly. I told him that we both wish it was different, but it is what it is.
So, for the past few days, he's been in bed less...up when I get home, sitting in the kitchen while I make dinner...even making some simple joint plans for the weekend…routine stuff that other couples perhaps take for granted, but that we haven't had for so, so long.
While I'm enjoying his company a lot right now, I do find myself being mistrustful that this is just a brief episode that won't last. And a tad pissed off that he's been missing in action for so long (e.g, for much of the past decade). And, for some reason, my grief keeps coming up.
But, all I can do is enjoy it this wonderful feeling while I have it and while I have him.
And, for right now, I am grateful.
Maybe it's that the medical stuff is so routine now...even with new issues... or we've reached some type of détente in our expectations for one another. Or maybe we're both getting closer to acceptance. But on occasion and more regularly, that gentle fondness is there in the forefront and we talk, laugh, and playfully joke with bad puns...just like before.
Oh, and I finally told H just how lonely I am given that he sleeps so much and that I'm tired of being in our house alone...I just have to get out, which disturbed him greatly. I told him that we both wish it was different, but it is what it is.
So, for the past few days, he's been in bed less...up when I get home, sitting in the kitchen while I make dinner...even making some simple joint plans for the weekend…routine stuff that other couples perhaps take for granted, but that we haven't had for so, so long.
While I'm enjoying his company a lot right now, I do find myself being mistrustful that this is just a brief episode that won't last. And a tad pissed off that he's been missing in action for so long (e.g, for much of the past decade). And, for some reason, my grief keeps coming up.
But, all I can do is enjoy it this wonderful feeling while I have it and while I have him.
And, for right now, I am grateful.
Labels:
our love,
relationship
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.
Labels:
caregiving,
family,
me
Tuesday, August 03, 2010
How I cope
Thanks for your comments to my last post. I appreciate the helpful advice. Even tho' I crabbed a bit in my last post, I do take steps to cope.
Here's how I've finally learned to cope with caregiving after 15 years of it:
Now, this isn't about thriving, but about surviving. Thriving is another thing entirely and I'll write about what I think I need to do there some other time.
Here's how I've finally learned to cope with caregiving after 15 years of it:
- I have a great therapist who has experience with dementia & end of life
- I take antidepressants
- I get away for one or two days a month to get a break
- I get away for a week every two or three months for work and I add additional days when I can
- I sit in a quiet house and just breath when H is sleeping
- I have a job that is not too demanding (e.g., I am under employed) that I generally like
- I have (a lot of) help around the house: cleaning, yard work, and for H: social worker, visiting RN & volunteers, the occasional doctor, caregivers for when I travel
- I try to simplify everything to reduce stress; for example, bills are on auto-pay (mostly), I use a meal service (thescramble.com) for meal planning & recipes, getting someone else to set up H's meds
- I get regular exercise, both at the gym and in the garden
- I eat healthy foods with only the occasional pig-out on ice cream
- I no longer drink except when travelling
- I am ruthless about prioritizing my time in this order: me, H, everything else
- I try not to go to every Dr. appointment with H
- I piss & moan on this blog, which helps me tremendously
- Bit by bit, I continue to reduce my expectations for H and my interactions with him
- I've realized that H is pretty demented and that he won't change; all I can do is change my reaction and approach
- I have learned to listen first to H, then pause, then think before I speak (he often doesn't mean what he says, I found out)
- I don't expect H to get better anymore
- I take one day a week, usually Saturday, and just do whatever I want, whenever I can
- I fantasize about what life will be like for me after H is gone
- I'm plotting to complete my bucket list whether H is here or not
- I fancy myself a single man, even tho' I'm caring for my long-time partner
- I accept that this situation is horrible for all parties and that H is certainly hurting too
- I remind myself that I make the choice to be the caregiver for H...no one "makes" me
Now, this isn't about thriving, but about surviving. Thriving is another thing entirely and I'll write about what I think I need to do there some other time.
Labels:
caregiving,
sanity
Friday, July 30, 2010
Thoughtful, loving alternative
Well, I've been thinking about some comments to my prior post (Snippets Again), specifically about choice when dealing with death and grief. And I thank my gentle readers for their comments.
Here's the deal: yes, it is a choice to wallow in pain and grief, to a degree.
But, the reality is that if I am fully present with H, as I try to be, then I am sad...both for him and for me. Simple.
Sure there are gifts -- important ones that I have blogged about here -- from this experience, but after 14 years of this, I am worn out from the loss and burden. I have great hope for me and my life, but not for H.
Last night, H was telling me that he was terrified that someone was going to show up at our door, arrest him for having AIDS, and take him to a concentration camp to be executed, but not until they delighted in his withdrawal from his pain meds. He was sweating, red faced, almost crying...abject, visceral fear.
I calmed him down, but this type of thing is a frequent event at our house these days.
How can I not be sad and not be affected every single f*!@ing day when the love of my life is delusional and terrified, can't walk hardly at all...even with a cane, and can no longer make a sandwich?
I would love to hear how to not feel sad and "chin up" or "man up" under these circumstances.
It is one thing to judge and lecture, it is entirely another to present a coherent, thoughtful, loving alternative.
Here's the deal: yes, it is a choice to wallow in pain and grief, to a degree.
But, the reality is that if I am fully present with H, as I try to be, then I am sad...both for him and for me. Simple.
Sure there are gifts -- important ones that I have blogged about here -- from this experience, but after 14 years of this, I am worn out from the loss and burden. I have great hope for me and my life, but not for H.
Last night, H was telling me that he was terrified that someone was going to show up at our door, arrest him for having AIDS, and take him to a concentration camp to be executed, but not until they delighted in his withdrawal from his pain meds. He was sweating, red faced, almost crying...abject, visceral fear.
I calmed him down, but this type of thing is a frequent event at our house these days.
How can I not be sad and not be affected every single f*!@ing day when the love of my life is delusional and terrified, can't walk hardly at all...even with a cane, and can no longer make a sandwich?
I would love to hear how to not feel sad and "chin up" or "man up" under these circumstances.
It is one thing to judge and lecture, it is entirely another to present a coherent, thoughtful, loving alternative.
Labels:
caregiving,
my grief
Tuesday, July 13, 2010
Snippets again
Oh, the drama of it all.
H has always liked reality television, such as Wife Swap, Nanny 911, etc. But now, he's completely focused on RTV (Reality TV), especially those shows that include yelling, screaming, fist fights, police takedowns, acerbic meter maids, crashes, etc. The noisier the better.
Grieving in the dark.
When the house is quiet at night, when H and all the animals have gone to bed, that's when I feel the saddest. Mostly, this is when I can finally hear myself think (see above). It's only then that I feel really, really sad for H and all that he has lost. And I feel sad that our lives have ended up where they are. I wish that there was some way to grieve, get it over with, and just be done with this mess…I have been grieving for over 15 years now. Ironically, I would have grieved less if he had just died 15 years ago.
As much as I grieve in the dark, it also comes up for me at odd times...in the grocery store, at the dentist (?), driving to work. I'm sad because I see what H has lost...pretty much everything at this point. And I'm sad that I can't help him, really. Hell, I'm sad that I can't help myself. And I'm sad that he's afraid...I am too.
Stuck in the past.
As I stumble into the future (which keeps arriving before I'm ready), H is rooted firmly in the past. He focuses on his anger towards his parents, getting arrested 20 year ago for minor possession, on how our relationship has never been what he wanted, how he was disadvantaged in school, how he had strokes as a child…. What can you say to someone who is living anywhere but here and now? Meet them where they are? Tell them to get over it? Just nod and listen?
Letting go.
H and I are moving farther and farther apart...at least I feel that way more and more. We spend less time talking than ever before...some of that is that H doesn't know what to say; I don't either. What can I share with him that he'd understand? What can he share with me that is relevant? He often sits in the office with his back to the blaring TV, staring at his computer screen. We are hardly even in the same room in the house anymore...a just metaphor for our life together.
H has always liked reality television, such as Wife Swap, Nanny 911, etc. But now, he's completely focused on RTV (Reality TV), especially those shows that include yelling, screaming, fist fights, police takedowns, acerbic meter maids, crashes, etc. The noisier the better.
Grieving in the dark.
When the house is quiet at night, when H and all the animals have gone to bed, that's when I feel the saddest. Mostly, this is when I can finally hear myself think (see above). It's only then that I feel really, really sad for H and all that he has lost. And I feel sad that our lives have ended up where they are. I wish that there was some way to grieve, get it over with, and just be done with this mess…I have been grieving for over 15 years now. Ironically, I would have grieved less if he had just died 15 years ago.
As much as I grieve in the dark, it also comes up for me at odd times...in the grocery store, at the dentist (?), driving to work. I'm sad because I see what H has lost...pretty much everything at this point. And I'm sad that I can't help him, really. Hell, I'm sad that I can't help myself. And I'm sad that he's afraid...I am too.
Stuck in the past.
As I stumble into the future (which keeps arriving before I'm ready), H is rooted firmly in the past. He focuses on his anger towards his parents, getting arrested 20 year ago for minor possession, on how our relationship has never been what he wanted, how he was disadvantaged in school, how he had strokes as a child…. What can you say to someone who is living anywhere but here and now? Meet them where they are? Tell them to get over it? Just nod and listen?
Letting go.
H and I are moving farther and farther apart...at least I feel that way more and more. We spend less time talking than ever before...some of that is that H doesn't know what to say; I don't either. What can I share with him that he'd understand? What can he share with me that is relevant? He often sits in the office with his back to the blaring TV, staring at his computer screen. We are hardly even in the same room in the house anymore...a just metaphor for our life together.
Labels:
dementia,
my grief,
stop the madness
Thursday, June 24, 2010
Tuesday, June 22, 2010
The bane of proximity
Both H and I struggled upon my return. Once I came back, had a good night's sleep, and I needed to do something for H (make dinner), all of those resentments, fatigue...the burden came rushing back...less than 24 hours after getting home.
Yea, holding H in my arms was wonderful, but after the initial elation, it was the same ole, same ole feelings of "I don't want to be here. I am so done with this. Etc."
And H was so looking forward to my return, but of course, he, like me, had unrealistic expectations for what it would be like once I got home. It didn't turn out the way he wanted and so he's been in a major funk for over a week now.
It is the old cliché that absence makes the heart grow fonder. That is indeed the case, but I wish that proximity didn't undo that fondness so quickly.
Last night, I was sitting at the dinner table with H and he blurts out, "Can't I just die?"
I said, "I'm not certain what to say, honey."
"You don't have to say anything. I'm just tired of not being wanted...even S(his friend with benefits) doesn't want me anymore." He's crying now. And yet again, I'm stuck between wanting to comfort him and boundaries that I know need to be in place for my sanity.
And it pains me to see him in pain. In spite of it all, I don’t want him to experience pain, but that is completely unrealistic as all he has had for the past 15 years are losses.
I wonder what his experience really is. Most recently, he was expressing alarm to his nurse and me about the oil spill in the Gulf, volcanoes, floods, & earthquakes all make it likely that he won't be able to get his medications when he needs them.
In any case, the up-close view was just as I left it. I blissfully forgot the burden while I was away and the love for him took center stage, where it belongs. Another good reason for placement.
Yea, holding H in my arms was wonderful, but after the initial elation, it was the same ole, same ole feelings of "I don't want to be here. I am so done with this. Etc."
And H was so looking forward to my return, but of course, he, like me, had unrealistic expectations for what it would be like once I got home. It didn't turn out the way he wanted and so he's been in a major funk for over a week now.
It is the old cliché that absence makes the heart grow fonder. That is indeed the case, but I wish that proximity didn't undo that fondness so quickly.
Last night, I was sitting at the dinner table with H and he blurts out, "Can't I just die?"
I said, "I'm not certain what to say, honey."
"You don't have to say anything. I'm just tired of not being wanted...even S(his friend with benefits) doesn't want me anymore." He's crying now. And yet again, I'm stuck between wanting to comfort him and boundaries that I know need to be in place for my sanity.
And it pains me to see him in pain. In spite of it all, I don’t want him to experience pain, but that is completely unrealistic as all he has had for the past 15 years are losses.
I wonder what his experience really is. Most recently, he was expressing alarm to his nurse and me about the oil spill in the Gulf, volcanoes, floods, & earthquakes all make it likely that he won't be able to get his medications when he needs them.
In any case, the up-close view was just as I left it. I blissfully forgot the burden while I was away and the love for him took center stage, where it belongs. Another good reason for placement.
Labels:
caregiving,
our love
Friday, June 11, 2010
The beauty of distance
I've been in NYC the past week for work and have enjoyed being here in the city with my work crew. Must say, tho', that I'm far too old for the combination of working on the road, the time zone change, and the all-night party that the city can be. Yea, and a few hangovers as well.
As in the past, when I was getting near to leaving on this trip, I couldn't wait to leave and get a break. And now, as has also been true prior, I'm looking forward to seeing H again. Odd to go from being angry at H for all the exhaustion and burden to missing him and looking forward to seeing him again.
Regardless of all that has happened, the fondness and love for H is still there.
I find the emotional whiplash exhausting...an exhausting way of being that has dogged me for over a decade now. The gifts - compassion, being able to set clear boundaries and keep to them, patience, respect for my own mortality (and his), and belief in the survival of love in spite of overwhelming odds - are great, but so is the cost.
It would be easier if I were either consistently resentful or consistently in love. But that isn't the way it is anymore.
When I see other couples, I wonder what their lives are like. What it must be like to not have such a whiplash every year or two. What it must be like to stay in one frame or another: either resentment that builds over time and results in divorce or love that builds over time and the sense of the adventure of a life shared and all the excitement and comfort that brings.
But, from where I sit now, some 3,000 miles from home, I'm excited to see H again and to hold him in my arms. I wish that I could hold onto this feeling once I get home in spite of the burden of caregiving.
As in the past, when I was getting near to leaving on this trip, I couldn't wait to leave and get a break. And now, as has also been true prior, I'm looking forward to seeing H again. Odd to go from being angry at H for all the exhaustion and burden to missing him and looking forward to seeing him again.
Regardless of all that has happened, the fondness and love for H is still there.
I find the emotional whiplash exhausting...an exhausting way of being that has dogged me for over a decade now. The gifts - compassion, being able to set clear boundaries and keep to them, patience, respect for my own mortality (and his), and belief in the survival of love in spite of overwhelming odds - are great, but so is the cost.
It would be easier if I were either consistently resentful or consistently in love. But that isn't the way it is anymore.
When I see other couples, I wonder what their lives are like. What it must be like to not have such a whiplash every year or two. What it must be like to stay in one frame or another: either resentment that builds over time and results in divorce or love that builds over time and the sense of the adventure of a life shared and all the excitement and comfort that brings.
But, from where I sit now, some 3,000 miles from home, I'm excited to see H again and to hold him in my arms. I wish that I could hold onto this feeling once I get home in spite of the burden of caregiving.
Labels:
caregiving,
our love
Tuesday, June 01, 2010
Frail is as frail does
Not much to report these days as H's viral load continues to stay down and life grinds on.
Happily, I'm heading out for a business trip next week to NYC. For the first time, I've arranged pro caregiver coverage while I'm out of town. I want someone who knows what they're looking at to keep an eye on him, help him with his meds, and cook for him. At least I can go with a clear mind, knowing that I've got coverage at home.
Difficult to see him so frail and shrinking. I've been stuffing him with his favorite rich foods (well, stuffing myself too), but he's barely maintaining his weight.
In the past, he's been frail, but then has bounced back. This time, he's staying frail. We were sitting in the hot tub and I was holding his hands...small, bony, weak, no grip anymore. And holding him in my arms...he's shrunk so much.
It's one thing to intellectualize the decline...to observe it and report...it's another thing to feel it with the arms that have held him so many times.
Happily, I'm heading out for a business trip next week to NYC. For the first time, I've arranged pro caregiver coverage while I'm out of town. I want someone who knows what they're looking at to keep an eye on him, help him with his meds, and cook for him. At least I can go with a clear mind, knowing that I've got coverage at home.
Difficult to see him so frail and shrinking. I've been stuffing him with his favorite rich foods (well, stuffing myself too), but he's barely maintaining his weight.
In the past, he's been frail, but then has bounced back. This time, he's staying frail. We were sitting in the hot tub and I was holding his hands...small, bony, weak, no grip anymore. And holding him in my arms...he's shrunk so much.
It's one thing to intellectualize the decline...to observe it and report...it's another thing to feel it with the arms that have held him so many times.
Labels:
decline,
my poor sweetheart
Monday, May 17, 2010
Why isn't it better?
When H is sickest, needless to say, our relationship declines. He's not cogent, feels awful, and there are other priorities.
But then, when he gets better, he goes on about how our relationship isn't what he wants it to be, that it ought to be better. Yet, he doesn't remember what's happened.
So, I find myself with someone who's been asleep for close to a year and then wakes up and wants their life to be what they want.
And, he can't understand that when he's sick, our relationship is all about me being guardian/caregiver and the last thing on my mind is what is going on with our relationship. I have other concerns, such as, "Is he going to die?"
He'll tell me that he's unhappy about this or that aspect of our time together and while I want to be sympathetic (and I am) to not getting needs met from a relationship, part of me just wants to slap him. "Don't you realize that it's like this because of your health? How can that not have an affect on our lives together?"
"Well, I'm better now," is what he'll say, "so there's nothing to worry about."
Yea, but tell that to person with PTSD. The event is over, but they are irrevocably changed, and not for the better
But then, when he gets better, he goes on about how our relationship isn't what he wants it to be, that it ought to be better. Yet, he doesn't remember what's happened.
So, I find myself with someone who's been asleep for close to a year and then wakes up and wants their life to be what they want.
And, he can't understand that when he's sick, our relationship is all about me being guardian/caregiver and the last thing on my mind is what is going on with our relationship. I have other concerns, such as, "Is he going to die?"
He'll tell me that he's unhappy about this or that aspect of our time together and while I want to be sympathetic (and I am) to not getting needs met from a relationship, part of me just wants to slap him. "Don't you realize that it's like this because of your health? How can that not have an affect on our lives together?"
"Well, I'm better now," is what he'll say, "so there's nothing to worry about."
Yea, but tell that to person with PTSD. The event is over, but they are irrevocably changed, and not for the better
Labels:
caregiving,
relationship,
stop the madness
Thursday, May 06, 2010
I'm sorry you're stuck, redux
Last night, I talked with H about his comment: "I'm sorry that you're stuck caring for me."
I thanked him for acknowledging what a difficult situation this is and I told him that I don't blame him for it.
"Where we are is because of your illness, not you," I told him. "I don't blame you for this, I blame your health. I wish that it was different, but it is what it is."
(Lots of conversation not worth repeating here.)
The core issue is that H can't accept that our relationship is irrevocably changed...he keeps telling me that I'm "punishing him" by not re-engaging in a romantic relationship as soon as he's feeling better.
I told him that "I can't deal with the whiplash. You're going to die, no you're not, then you're going to die again, then you get better and want me to be the loving man that I was earlier in our time. You don't remember last year, you could hardly get out of bed, couldn't make a sandwich, and now you want me to act like nothing ever happened. I can't keep up emotionally."
"No, I don't remember what happened last year, but I know I was in bed a lot," he says.
I continue, "If you want me to show up, you need to show up too. And you haven't for years, except for a few months at a time. I do love you H and I want to make certain you're OK, but I'm mostly a nurse now anyway, not a partner."
And then the divorce word comes up again. Sigh.
So we go through all of that again. And I told him that I'm not going to make him leave, but if he wants to, let's talk about that, but where will he go?
The whole thing netted out to him begging me to place him at the facility that we have planned on using when the need arises. Then he told me he didn't want to talk about this anymore.
This morning, I asked him if he remembered our conversation last night and what he thought about it.
"No."
I thanked him for acknowledging what a difficult situation this is and I told him that I don't blame him for it.
"Where we are is because of your illness, not you," I told him. "I don't blame you for this, I blame your health. I wish that it was different, but it is what it is."
(Lots of conversation not worth repeating here.)
The core issue is that H can't accept that our relationship is irrevocably changed...he keeps telling me that I'm "punishing him" by not re-engaging in a romantic relationship as soon as he's feeling better.
I told him that "I can't deal with the whiplash. You're going to die, no you're not, then you're going to die again, then you get better and want me to be the loving man that I was earlier in our time. You don't remember last year, you could hardly get out of bed, couldn't make a sandwich, and now you want me to act like nothing ever happened. I can't keep up emotionally."
"No, I don't remember what happened last year, but I know I was in bed a lot," he says.
I continue, "If you want me to show up, you need to show up too. And you haven't for years, except for a few months at a time. I do love you H and I want to make certain you're OK, but I'm mostly a nurse now anyway, not a partner."
And then the divorce word comes up again. Sigh.
So we go through all of that again. And I told him that I'm not going to make him leave, but if he wants to, let's talk about that, but where will he go?
The whole thing netted out to him begging me to place him at the facility that we have planned on using when the need arises. Then he told me he didn't want to talk about this anymore.
This morning, I asked him if he remembered our conversation last night and what he thought about it.
"No."
Monday, May 03, 2010
I'm sorry you're stuck
I was watching TV in the living room and I hear H talking to me from the kitchen.
"I'm sorry that you're stuck caring for me," he says softly.
I couldn't say it's OK, because it's not. I couldn't say I'm not stuck, because I am (tho' by choice, I suppose...). I couldn't say that I don't want to do it anymore, even tho' that's true.
I didn't know how to respond, so I didn't.
"I'm sorry that you're stuck caring for me," he says softly.
I couldn't say it's OK, because it's not. I couldn't say I'm not stuck, because I am (tho' by choice, I suppose...). I couldn't say that I don't want to do it anymore, even tho' that's true.
I didn't know how to respond, so I didn't.
Labels:
burnout,
caregiving
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