H has needed new shoes for some time now: tennis, casual, loafers, you name it. I've been trying to get H to the mall to buy shoes for some time, but he rarely feels well enough to do that. So, last week was H's birthday and I thought that we could get some shoes and go to dinner afterwards.
We walk into a high-end shoe store (famous name starts with N) and I tell the person working there, "We're here to get some shoes for my friend." We talk a bit about what kind of shoes we're looking for and show her some ideas: walking, casual, slip ons...etc. She disappears for awhile.
All the time she is gone, I'm talking with H about this shoe or that shoe, did he like it, does he care about the color, etc.
The clerk comes back and asks how H is doing today. And he says, "Today is my birthday. I'm 53 today." The clerk looks a bit puzzled and asks, "What are you doing to celebrate your birthday?" "Well," H says, "I'm getting some shoes and then we're going to dinner." Now I'm noticing how out of place he seems around adults who have good social skills. (Conversation here about where we are going to dinner.)
While we were sitting at the shoe place, he started complaining about his stomach, so I knew that dinner out was out of the question. So, we ordered in that night.
Later H confessed to me that he probably sounded silly...like someone who is "slow"...and he asked me if I was embarrased...no, not really. I told him that I usually am on a mission and just focus on doing that. "But, no, I'm not embarassed...you do what you do and I'm just trying to get the job done." But, yea, he did sound slow.
Later he told me that maybe he was so odd because I just took over the proceedings and I told him, "Not really. I got it started and tried to involve you in all of the choices, asking your opinion, etc. What you say & how you say it are entirely up to you. Besides, worse has happened, so no, I'm not embarassed."
Tired. Bored. Lonely. Distressed. Burned out. But not embarassed.
Tuesday, May 29, 2012
Thursday, March 01, 2012
Detox or wires in the spine
Nothing unusual in the 5 months or so since I've posted last. More of the same. What I can say is changed is my attitude and approach. I’m just trying to be kind and helpful to H, focus on my work, and do things that I enjoy. Not much else I can do, aside from get me a boyfriend, which would likely make it easier still for me to care for H.
H continues his slow decline and is getting more and more frail. Frail as in just not able to do much (dishes, clean up after the bird, put clean clothes away) and hardly ever leaving the house except for Dr. appointments, which of course I take him to. Last year, this time, he was getting out of the house for walks a few times a week in the neighborhood, but now, "I just don't feel well enough to do it." He told me the other day that he thinks that his legs are atrophying (they look like it) because he is either in bed or sits at the computer all day.
His dementia is getting worse too, as expected, ever so slowly and insidiously. Now, long term memory is going more and more (short-term was already gone). No news here really and no stories to recount...I think that I'm so used to it by now that I don't think it remarkable…just the way he is. He stares off into space and can hardly get a out sentence at times. Very hard to have a cogent conversation with him much of the time...he keeps reliving traumatic events in his past and can't stay focused on the "right here, right now." How I crave adult conversation that isn't about his health or his trauma.
He desperately wants to see his dad and sister in another state. And I desperately want him to go for any number of reasons. He put it in motion to go, but finally last night he agreed that he can't...he just doesn't have the stamina. And every time he's gone on one of these trips, he comes back and stays in bed for weeks and sometimes has seizure episodes. Of course, he doesn't remember any of this history.
The current scary thing is that he is topping out on how much pain medication they can give him for his neuropathy. His tolerance is high after 15+ years on narcotics and in any case, you only have so many receptors that the opiates can bind to and reduce the pain. So increasing the dose won't work anymore.
Options for the next time he needs to up the dose: 1) go into in-patient detox, get zero'd out on the narcotics, and begin again with no tolerance & 2) have a spinal stimulator (wire in spine with an electrical charge) to block some, but not all, of the pain. Both seem awful. Needless to say, he is beside himself and terrified of either option. It bothers me too...but this is just one more situation that I have to witness in his long journey downhill. I don't feel fear about it, just sadness and resignation...yet another big health issue.
If there is any gift in all this (and there are gifts), it is that these situations are prompting him and me to have honest, intimate conversations about where he is, the impact on both of our lives, and what we need to plan for without his denial being front and center. Now, I remember these conversations well and cherish them as he is rarely present when discussing tough (well any) topics. I hope that he remembers and cherishes these important moments as well.
H continues his slow decline and is getting more and more frail. Frail as in just not able to do much (dishes, clean up after the bird, put clean clothes away) and hardly ever leaving the house except for Dr. appointments, which of course I take him to. Last year, this time, he was getting out of the house for walks a few times a week in the neighborhood, but now, "I just don't feel well enough to do it." He told me the other day that he thinks that his legs are atrophying (they look like it) because he is either in bed or sits at the computer all day.
His dementia is getting worse too, as expected, ever so slowly and insidiously. Now, long term memory is going more and more (short-term was already gone). No news here really and no stories to recount...I think that I'm so used to it by now that I don't think it remarkable…just the way he is. He stares off into space and can hardly get a out sentence at times. Very hard to have a cogent conversation with him much of the time...he keeps reliving traumatic events in his past and can't stay focused on the "right here, right now." How I crave adult conversation that isn't about his health or his trauma.
He desperately wants to see his dad and sister in another state. And I desperately want him to go for any number of reasons. He put it in motion to go, but finally last night he agreed that he can't...he just doesn't have the stamina. And every time he's gone on one of these trips, he comes back and stays in bed for weeks and sometimes has seizure episodes. Of course, he doesn't remember any of this history.
The current scary thing is that he is topping out on how much pain medication they can give him for his neuropathy. His tolerance is high after 15+ years on narcotics and in any case, you only have so many receptors that the opiates can bind to and reduce the pain. So increasing the dose won't work anymore.
Options for the next time he needs to up the dose: 1) go into in-patient detox, get zero'd out on the narcotics, and begin again with no tolerance & 2) have a spinal stimulator (wire in spine with an electrical charge) to block some, but not all, of the pain. Both seem awful. Needless to say, he is beside himself and terrified of either option. It bothers me too...but this is just one more situation that I have to witness in his long journey downhill. I don't feel fear about it, just sadness and resignation...yet another big health issue.
If there is any gift in all this (and there are gifts), it is that these situations are prompting him and me to have honest, intimate conversations about where he is, the impact on both of our lives, and what we need to plan for without his denial being front and center. Now, I remember these conversations well and cherish them as he is rarely present when discussing tough (well any) topics. I hope that he remembers and cherishes these important moments as well.
Monday, October 24, 2011
Dead weight
As always, life grinds on and on...push the rock up, it rolls down, push it up again (rinse and repeat...).
I wonder about finding meaning in life with all this grinding and rolling. I'm not talking about meaning in the abstract sense, but in the concrete sense of "here is why I get up every morning." This is not depression, mind you...just a heart and mind looking for a mission, for peace, for adult company, for satisfaction, for fun, for an adventure worth having.
H continues to be sort of a mess with a few stays at the hospital since I've last written. Pretty routine seizure (they think) activity. He's still declining although it is slow, almost imperceptible...at least until I see him try to have a conversation with someone. More of the same.
Part of the grind is living with someone I don't want to live with anymore. Over time, I've come to the conclusion that I really don't like H much as he is now. I would prefer not to be around him, to not have to deal with him, to close that chapter in my life. If I could, I would just "wish him into the corn field." (sic)
I've written here about the delusions and the paranoia. Recently, tho', a heap o' narcissism is cropping up and, after all, it is all about him. It is all about people listening to him (which means they must agree with him and do as he says) and of course, if they're struggling, it is because they didn't listen to him. Nothing worse than someone who knows what's good for someone else and has no hesitation in telling them with conviction.
All of this is to say that I generally feel pretty happy (really), but struggle with putting one foot in front of another (with purpose) as I move through time with H. It's hard for me to imagine that I'd place H because I tire of him, because he pisses me off, because I'm tired, because I don't like him anymore, because he is dead weight.
I wonder about finding meaning in life with all this grinding and rolling. I'm not talking about meaning in the abstract sense, but in the concrete sense of "here is why I get up every morning." This is not depression, mind you...just a heart and mind looking for a mission, for peace, for adult company, for satisfaction, for fun, for an adventure worth having.
H continues to be sort of a mess with a few stays at the hospital since I've last written. Pretty routine seizure (they think) activity. He's still declining although it is slow, almost imperceptible...at least until I see him try to have a conversation with someone. More of the same.
Part of the grind is living with someone I don't want to live with anymore. Over time, I've come to the conclusion that I really don't like H much as he is now. I would prefer not to be around him, to not have to deal with him, to close that chapter in my life. If I could, I would just "wish him into the corn field." (sic)
I've written here about the delusions and the paranoia. Recently, tho', a heap o' narcissism is cropping up and, after all, it is all about him. It is all about people listening to him (which means they must agree with him and do as he says) and of course, if they're struggling, it is because they didn't listen to him. Nothing worse than someone who knows what's good for someone else and has no hesitation in telling them with conviction.
All of this is to say that I generally feel pretty happy (really), but struggle with putting one foot in front of another (with purpose) as I move through time with H. It's hard for me to imagine that I'd place H because I tire of him, because he pisses me off, because I'm tired, because I don't like him anymore, because he is dead weight.
Tuesday, July 12, 2011
It's been a long time since snippets
This summary is not available. Please
click here to view the post.
Thursday, May 05, 2011
This 'n' that
While H was up and about much more for awhile, he's now back in bed most of the time. Maybe up for just a few hours a day again. He told me that he just doesn't feel well and is very, very tired. Nice to get the gallbladder out, and that helped him a lot, but at the end of the day, he's still a very sick puppy.
He's got a classic car that he has been lovingly restoring for the past 20 years or so. It is the second love of his life, he tells me. He doesn't feel well enough to even take it out for a spin around the block, not to mention getting it to the shop again for some (more) restoration work.
I've been working to get him to accept that our romantic relationship is over. I told him so in so many words a bit ago, just as I have several times over the past few years. Each time, this seemed to be a surprise to him. Sigh. I'm guessing he just doesn't remember our conversations, is in denial, or hoping I'll change my mind/heart.
Finally, I've come to the realization that I don't like being home anymore...in retrospect, this seems obvious, but I finally named it and claimed it. When H is up, I don't like dealing with him or his noisy pet or his blaring TV shows or his incessant repetitive questions and statements. When he is asleep, I fantasize/worry about what my life will be like when he is gone, and I hope that he goes soon.
And finally, finally, I am able to catch myself in conversation and respond with more patience and kindness than I thought I had. I keep saying to myself, "You've got a kid now…respond in kind."
All of this points to a few truths:
* My identity is H's caregiver (and partner) and little else
* I am feeling lost as I struggle to move past this identity and I worry about how lost I will feel when he is gone
* I am often profoundly tired and I understand why people just give up and walk away
But, push the rock up the hill again, I must.
He's got a classic car that he has been lovingly restoring for the past 20 years or so. It is the second love of his life, he tells me. He doesn't feel well enough to even take it out for a spin around the block, not to mention getting it to the shop again for some (more) restoration work.
I've been working to get him to accept that our romantic relationship is over. I told him so in so many words a bit ago, just as I have several times over the past few years. Each time, this seemed to be a surprise to him. Sigh. I'm guessing he just doesn't remember our conversations, is in denial, or hoping I'll change my mind/heart.
Finally, I've come to the realization that I don't like being home anymore...in retrospect, this seems obvious, but I finally named it and claimed it. When H is up, I don't like dealing with him or his noisy pet or his blaring TV shows or his incessant repetitive questions and statements. When he is asleep, I fantasize/worry about what my life will be like when he is gone, and I hope that he goes soon.
And finally, finally, I am able to catch myself in conversation and respond with more patience and kindness than I thought I had. I keep saying to myself, "You've got a kid now…respond in kind."
All of this points to a few
* My identity is H's caregiver (and partner) and little else
* I am feeling lost as I struggle to move past this identity and I worry about how lost I will feel when he is gone
* I am often profoundly tired and I understand why people just give up and walk away
But, push the rock up the hill again, I must.
Wednesday, March 02, 2011
Healthier weirdness
Now that H has had his gallbladder out, he is doing much better with eating. And he's just not in bed as much. I mean, he's up much of the day now on weekends, he's tidying up the house, and starting up long-mothballed projects.
This is really weird. I suppose that I should be happy about this, but it's taking some adjustment. H finds it weird too.
It's so strange to have someone who has been in bed for 13 of the past 15 years and now he's not...to go from bed-ridden and terminal to talking about his hope for the future. I don't know how to be with him as a partner anymore...just as a caregiver.
And the MRI showed no changes in his brain over the last 5 years or so. I have fears it means this will just drag on and on.
I don't trust it. I don't really like it. And it pisses me off, "Where have you been the last decade, my dear?"
Oh sure, I'm happy for him that he's feeling better. But, the dissonance in my head is daunting. How do I reconcile the "I just wish you'd die already" feelings with the happiness *for him*. Well, I can't.
This is really weird. I suppose that I should be happy about this, but it's taking some adjustment. H finds it weird too.
It's so strange to have someone who has been in bed for 13 of the past 15 years and now he's not...to go from bed-ridden and terminal to talking about his hope for the future. I don't know how to be with him as a partner anymore...just as a caregiver.
And the MRI showed no changes in his brain over the last 5 years or so. I have fears it means this will just drag on and on.
I don't trust it. I don't really like it. And it pisses me off, "Where have you been the last decade, my dear?"
Oh sure, I'm happy for him that he's feeling better. But, the dissonance in my head is daunting. How do I reconcile the "I just wish you'd die already" feelings with the happiness *for him*. Well, I can't.
Monday, February 21, 2011
Resistance is futile (or at least hurts)
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.
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 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.
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.
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."
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.
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."
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.
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, 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.
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.
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.
Thursday, June 24, 2010
Subscribe to:
Posts (Atom)
Posts
