We had a nurse come to the house today to evaluate H for home visits to help with his meds. It's always striking to have a cogent adult in the house and compare H to that. And I realize how lost H would be without my help with all the paperwork and questions. The first nursing visit will be later this week!
Someone asked me once how my birthday was, I said automatically, "Fine thanks…just another day with a hangover." Well, I've not had a hangover every day for a week or two and I'm realizing just how impaired I have been. Wow. My mind is working again and I'm getting stuff done at work. I have energy and my quick wit is returning. And I've lost 7 pounds!
Local sister is taking care of H's dinners for the next month or so while I'm at evening sessions. I've talked with her and all is set up. I felt elation, yes elation, when H asked me how it was going to work and I said, "We've talked and it's all set up, but you need to talk with sister to find out the particulars." How nice to pass the buck!
Monday, March 30, 2009
Tuesday, March 24, 2009
Lab results
H's viral load is now undectable...the first time in over a decade.
His T-cell count is 984, well within the normal range for a man his (our) age.
He still sleeps much of the time, tells me he feels crappy a lot, gets anxious when we run out of grocery items (like sugar), is in terrible pain from neuropathy, and has a hard time following or participating in a conversation or making a bowl of cereal.
Modern medicine has saved his life again, but for what? For this?
His T-cell count is 984, well within the normal range for a man his (our) age.
He still sleeps much of the time, tells me he feels crappy a lot, gets anxious when we run out of grocery items (like sugar), is in terrible pain from neuropathy, and has a hard time following or participating in a conversation or making a bowl of cereal.
Modern medicine has saved his life again, but for what? For this?
Monday, March 23, 2009
H's support
Over the past week or so, I've been consciously reducing the amount that I drink in prep for stopping entirely. Now, I know that I have to stop, but I'm hoping to manage down the withdrawal just a bit.
A week from tomorrow I start my evening sessions and no later than that day, I have to stop drinking.
So, I've cut down from 8+/day to 6 to 4, etc. over the past week. This has been surprisingly hard. And now I get cravings by 10am every day, earlier than my usual, "It's 3 o'clock…where's my beer?"
H has been helping me stay within my limits. We count out how many I get and whatever is extra gets hidden. And I don't start drinking until 5pm.
Now, I'm not keen on putting H in the role of policeman, but it's something he can do to help for the next week or two and he is more than willing to do so. And I both appreciate and need the support right now.
In fact, we discussed H going to AZ to visit his sister during this time. His sister suggested it in fact…wanting to be helpful and supportive.
I said, "No because I don't know that I trust myself to not drink and so I could really use your support.
H said, "I don't trust you to not drink either."
And while I've been whining here about H not being there for me, this is one area where he can be. And for that I am very grateful.
A week from tomorrow I start my evening sessions and no later than that day, I have to stop drinking.
So, I've cut down from 8+/day to 6 to 4, etc. over the past week. This has been surprisingly hard. And now I get cravings by 10am every day, earlier than my usual, "It's 3 o'clock…where's my beer?"
H has been helping me stay within my limits. We count out how many I get and whatever is extra gets hidden. And I don't start drinking until 5pm.
Now, I'm not keen on putting H in the role of policeman, but it's something he can do to help for the next week or two and he is more than willing to do so. And I both appreciate and need the support right now.
In fact, we discussed H going to AZ to visit his sister during this time. His sister suggested it in fact…wanting to be helpful and supportive.
I said, "No because I don't know that I trust myself to not drink and so I could really use your support.
H said, "I don't trust you to not drink either."
And while I've been whining here about H not being there for me, this is one area where he can be. And for that I am very grateful.
Friday, March 20, 2009
Confirmation
Got an assessment at a treatment center. "Yes, you're an alcoholic." Thought so. I'm starting outpatient treatment the week after next.
Getting some help, family stepping up. "I'm here for both of you," his sister who lives locally says. They will help with dinners while I'm gone.
"I'm sorry that my illness makes you drink, " H says.
I say, looking him square in the eye, "Thank you, but don't blame yourself. I have to take responsibility for this."
Talked with a nurse today about help with meds, which should start in the next week or so. "…you're losing him inch by inch, it's a chronic condition with a slow decline."
Getting some help, family stepping up. "I'm here for both of you," his sister who lives locally says. They will help with dinners while I'm gone.
"I'm sorry that my illness makes you drink, " H says.
I say, looking him square in the eye, "Thank you, but don't blame yourself. I have to take responsibility for this."
Talked with a nurse today about help with meds, which should start in the next week or so. "…you're losing him inch by inch, it's a chronic condition with a slow decline."
Thursday, March 19, 2009
Single dad
Well, it's just not the care duties, but it's the whole package of having to play "single Dad" for another grown man in the house. Very little happens without me personally doing it, cooking, picking up the house, bill paying, unravelling insurance issues, etc.
That's annoying enough after 10+ years of this.
But the real issue isn't the care, the chores, or the responsibility, but that I don't get my needs met by this person. And it won't be any different unless I do something about it. H is hardly capable of making food for himself, let alone being capable of meeting my needs.
However this resolves itself or not, I do believe that, after a bit of errrrr adjustment, that I'll be able to handle this all better when I'm sober.
There I wrote it, "when I'm sober."
And I also think, with apologies to Saint Augustine, "Lord make me sober, but not yet."
That's annoying enough after 10+ years of this.
But the real issue isn't the care, the chores, or the responsibility, but that I don't get my needs met by this person. And it won't be any different unless I do something about it. H is hardly capable of making food for himself, let alone being capable of meeting my needs.
However this resolves itself or not, I do believe that, after a bit of errrrr adjustment, that I'll be able to handle this all better when I'm sober.
There I wrote it, "when I'm sober."
And I also think, with apologies to Saint Augustine, "Lord make me sober, but not yet."
Monday, March 16, 2009
Monday dyad
Illusions
I've been encouraging H to do as much as he can for himself. This could be medication ordering & set up, calling about insurance snafus, or even just getting an eye exam.
It's helpful to me if he can do the tasks, but mostly I’m just playing a game with myself that he's not totally dependant on me. If he can do this or that, then I don't have to acknowledge the reality.
Sometimes, he can do the task…but more often than not, he gets frustrated and whacked out. Then I have to jump in, call him down, and finish the task myself.
Might be better if I just do the tasks myself, me thinks.
Give up my dreams
We were watching some TV show and there was a Bentley on it…a nice new convertible. (He's always been keen on fancy cars, especially Bentleys.)
H sighs and asks me, "Should I give up on my dreams?"
"What do you mean?" I ask.
H says, "I just don't know if I should give up on my dreams…."
I say, "No, because anything can happen. I could die of a heart attack tomorrow and you could buy that Bentley. You just never know."
"I'd really like a red one," he says.
"Yes, you'd look good in a red one," I reply.
I've been encouraging H to do as much as he can for himself. This could be medication ordering & set up, calling about insurance snafus, or even just getting an eye exam.
It's helpful to me if he can do the tasks, but mostly I’m just playing a game with myself that he's not totally dependant on me. If he can do this or that, then I don't have to acknowledge the reality.
Sometimes, he can do the task…but more often than not, he gets frustrated and whacked out. Then I have to jump in, call him down, and finish the task myself.
Might be better if I just do the tasks myself, me thinks.
Give up my dreams
We were watching some TV show and there was a Bentley on it…a nice new convertible. (He's always been keen on fancy cars, especially Bentleys.)
H sighs and asks me, "Should I give up on my dreams?"
"What do you mean?" I ask.
H says, "I just don't know if I should give up on my dreams…."
I say, "No, because anything can happen. I could die of a heart attack tomorrow and you could buy that Bentley. You just never know."
"I'd really like a red one," he says.
"Yes, you'd look good in a red one," I reply.
Tuesday, March 10, 2009
Gearing up to dry out
For many years now, I've been drinking quite a bit. At first, it was for fun and now, well, let's just say it's a requirement.
When H first got sick, 12 years or so ago, I started drinking more and with increasing regularity and I worked my way up to a 6 pack a day. Recently, I've blown through that mark and drink way more than I mean to, even tho' I'm trying to limit it. Sigh.
I remember talking with a therapist about my drinking. At that time, H was very, very ill. The therapist said, "Well, your drinking is understandable, but if it continues for longer than 2 or 3 years after his death, then that is a concern." That conversation was 9 years ago now.
The cold reality is that I need to stop drinking before I slip off the cliff. And the other cold reality is that I won't be able to medicate myself when I'm at home and I hate being home.
I'm sad that drinking has become what smoking was: something I used to enjoy, but now I can't control anymore and I have to stop. While I can have a cigarette from time to time, I know better than to have any in the house as I'll just smoke 'em all, quickly and without realizing it.
Now, I'm not keen on AA, and I'm already in therapy, but I'm going to my Dr. later this week to see if I can't take something to help with withdrawal. Getting Nicotine replacement was the only way I was able to stop smoking. I hope there is something comparable for drinking.
When H first got sick, 12 years or so ago, I started drinking more and with increasing regularity and I worked my way up to a 6 pack a day. Recently, I've blown through that mark and drink way more than I mean to, even tho' I'm trying to limit it. Sigh.
I remember talking with a therapist about my drinking. At that time, H was very, very ill. The therapist said, "Well, your drinking is understandable, but if it continues for longer than 2 or 3 years after his death, then that is a concern." That conversation was 9 years ago now.
The cold reality is that I need to stop drinking before I slip off the cliff. And the other cold reality is that I won't be able to medicate myself when I'm at home and I hate being home.
I'm sad that drinking has become what smoking was: something I used to enjoy, but now I can't control anymore and I have to stop. While I can have a cigarette from time to time, I know better than to have any in the house as I'll just smoke 'em all, quickly and without realizing it.
Now, I'm not keen on AA, and I'm already in therapy, but I'm going to my Dr. later this week to see if I can't take something to help with withdrawal. Getting Nicotine replacement was the only way I was able to stop smoking. I hope there is something comparable for drinking.
Wednesday, March 04, 2009
Family time
Last weekend was a big b-day bash for a family member who turned 50 (no, not me…yet!).
It was frustrating for H because his sister and her family came into town for the event and he didn't get to spend as much time with them as he would have liked.
I had a wonderful time with them all and my worries about getting grief were happily unfounded. What was even better was that we only had a moment to talk about H because there was so much going on. Nice to not have the focus on him so much.
What was most striking tho' was when I told his sister, "You know, (sister's name), I love H and I'm doing the best I can. I know how unhappy he is."
She starts getting teary-eyed. Me too.
Whatever tension was in the air due to the placement fracas last Fall vanished.
She said, "I wish I could fix his attitude. He's so angry and negative. He's pissed at you, mom & dad, me, everyone, the world."
"Me too," I said. "But who can blame him? He's not even 50 yet, but he's losing his mind, his health, everything. And mostly, (sister's endearing nick-name), he's just tired, very tired."
It was frustrating for H because his sister and her family came into town for the event and he didn't get to spend as much time with them as he would have liked.
I had a wonderful time with them all and my worries about getting grief were happily unfounded. What was even better was that we only had a moment to talk about H because there was so much going on. Nice to not have the focus on him so much.
What was most striking tho' was when I told his sister, "You know, (sister's name), I love H and I'm doing the best I can. I know how unhappy he is."
She starts getting teary-eyed. Me too.
Whatever tension was in the air due to the placement fracas last Fall vanished.
She said, "I wish I could fix his attitude. He's so angry and negative. He's pissed at you, mom & dad, me, everyone, the world."
"Me too," I said. "But who can blame him? He's not even 50 yet, but he's losing his mind, his health, everything. And mostly, (sister's endearing nick-name), he's just tired, very tired."
Monday, March 02, 2009
Thank you
I wanted to say thank you to all of you folks out there who read the blog.
It's very helpful to know that someone is out there listening.
And I'm grateful that you spend time reading my entries, doleful tho' they often are, and supporting me in your thoughts, prayers, and comments.
It's very helpful to know that someone is out there listening.
And I'm grateful that you spend time reading my entries, doleful tho' they often are, and supporting me in your thoughts, prayers, and comments.
Why do I do this?
Twice a day, H takes his many, many meds. They make him very, very sick and so he dreads 10am and 10pm. The other morning, he was grumbling about taking his meds and exasperated.
"Why do I do this? Why do I take these?" he asks me as he looks at a small Dixie cup filled with pills. He takes two Dixie cups filled with pills twice a day.
"Because they keep you alive."
He says, "Yea, but I feel so bad so much. I should stop taking them."
"You've done that a couple of times, you know…"
"I have?" he asks, looking very puzzled.
"Yea, at least 3 times you stopped taking the meds because they made you so sick. You called it 'pill rebellion.' "
"Then, you got sick, very sick within a week or so of stopping the meds…with what you described as the worst flu you've ever had. The virus came roaring back. And you got scared - got hospitalized one time - and started taking them again."
"I did?" he asks. "I don't remember any of that."
"Why do I do this? Why do I take these?" he asks me as he looks at a small Dixie cup filled with pills. He takes two Dixie cups filled with pills twice a day.
"Because they keep you alive."
He says, "Yea, but I feel so bad so much. I should stop taking them."
"You've done that a couple of times, you know…"
"I have?" he asks, looking very puzzled.
"Yea, at least 3 times you stopped taking the meds because they made you so sick. You called it 'pill rebellion.' "
"Then, you got sick, very sick within a week or so of stopping the meds…with what you described as the worst flu you've ever had. The virus came roaring back. And you got scared - got hospitalized one time - and started taking them again."
"I did?" he asks. "I don't remember any of that."
Tuesday, February 24, 2009
Being the bearer
H's sister and her family are coming to town this weekend for a family birthday bash. (H's parents are not coming to town, which is AOK.) I haven't seen his sister in about 4 years…last time she came up to see H because we were told that he was going to die in 6 months. But, another anti-viral med came out and pulled him back.
But the past year or so has been strained with his family because I moved so aggressively to place him last year.
Because they're not local, they don't see how H is really doing except when he goes to visit once a year or so…like he did last Thanksgiving. And he tends to put on a good show for them, although "he does sleep a lot."
As is the case with H, whenever I raise the issue of my burnout (e.g., my experience), their response is that this means divorce and they get all discounting and accusatory on my ass. Really, what I'd like would be some support and sympathy, but they can't seem to muster it and neither can H.
So, I'm not certain what to expect when they're all in town again.
I guess that no matter how I play it, I am the bad guy. And I just need to accept that. After all, I'm the one who struggles to deal and if I can't, then they are terrified that they will have to step up.
The only way I know how to play it is to tell my truth and if they start to get surly and I feel defensive, I'll just tell them that I love H and I’m doing the best I can…and then just walk away.
My biggest challenge is to approach the time with them with an open mind (& heart!) and not have any expectations. But right now, I find that rather daunting.
But the past year or so has been strained with his family because I moved so aggressively to place him last year.
Because they're not local, they don't see how H is really doing except when he goes to visit once a year or so…like he did last Thanksgiving. And he tends to put on a good show for them, although "he does sleep a lot."
As is the case with H, whenever I raise the issue of my burnout (e.g., my experience), their response is that this means divorce and they get all discounting and accusatory on my ass. Really, what I'd like would be some support and sympathy, but they can't seem to muster it and neither can H.
So, I'm not certain what to expect when they're all in town again.
I guess that no matter how I play it, I am the bad guy. And I just need to accept that. After all, I'm the one who struggles to deal and if I can't, then they are terrified that they will have to step up.
The only way I know how to play it is to tell my truth and if they start to get surly and I feel defensive, I'll just tell them that I love H and I’m doing the best I can…and then just walk away.
My biggest challenge is to approach the time with them with an open mind (& heart!) and not have any expectations. But right now, I find that rather daunting.
Monday, February 23, 2009
Heal me
H's family has always been seekers, looking for alternative healing methods that include both the profound and the silly. Profound in terms of how we create and can change our reality and silly like a burbling mason jar of fungus has healing properties or pads that remove toxins from the bottom of your feet.
While these methods may or may not work, they pursue them with a vigor that some reserve for their most favored hobbies or passions.
Recently, H's little sister has been interested in a form of long-distance healing. She's taking some classes and others in the family are interested also.
So, H says to me last night, "They're learning this (healing technique) for me, you know."
"Yes, honey, they love you very much and want to help."
He says, "I just don't know if it could help or not…."
"Well, if it does, it would be a miracle. Not that I don't believe in miracles…just that it would take one to make you healthy again."
H says, "I really need two miracles: one to get me well and one to get a good job so I can get on with my life."
While these methods may or may not work, they pursue them with a vigor that some reserve for their most favored hobbies or passions.
Recently, H's little sister has been interested in a form of long-distance healing. She's taking some classes and others in the family are interested also.
So, H says to me last night, "They're learning this (healing technique) for me, you know."
"Yes, honey, they love you very much and want to help."
He says, "I just don't know if it could help or not…."
"Well, if it does, it would be a miracle. Not that I don't believe in miracles…just that it would take one to make you healthy again."
H says, "I really need two miracles: one to get me well and one to get a good job so I can get on with my life."
Wednesday, February 18, 2009
It is what it is
I keep having regrets, deep regrets about how things were and how things are. And I wonder what would have happened if I made other decisions instead of the ones I made. And, yes, I blame myself sometimes for the choices I made.
"If only I had done this or that…." "If only it were different…" "If only, if only."
Well, it's not if only. It is what it is.
And instead of just looking at things as "these are the facts and circumstances of where I'm at," I keep looking back over my shoulder wishing it was something else, that I had done something else, and that I'm somehow able to do something to change it. And I beat myself up about the regret I feel because somehow I think that I could affect the outcome. But I can't.
All of this is my struggle for acceptance of what is. That my partner is dying, slowly, and that I'm very sad and it impacts me profoundly in many ways. And that results in a life that I'm not happy with.
My favorite metaphor that my therapist uses is, "You're in a plane that's going to crash and there's nothing you can do because you're not the pilot. You're not in control, you can't be and you won't be. You have to accept the reality that H is dying, nothing you can do or think will change that in any way, and you're just along for the very scary ride."
"If only I had done this or that…." "If only it were different…" "If only, if only."
Well, it's not if only. It is what it is.
And instead of just looking at things as "these are the facts and circumstances of where I'm at," I keep looking back over my shoulder wishing it was something else, that I had done something else, and that I'm somehow able to do something to change it. And I beat myself up about the regret I feel because somehow I think that I could affect the outcome. But I can't.
All of this is my struggle for acceptance of what is. That my partner is dying, slowly, and that I'm very sad and it impacts me profoundly in many ways. And that results in a life that I'm not happy with.
My favorite metaphor that my therapist uses is, "You're in a plane that's going to crash and there's nothing you can do because you're not the pilot. You're not in control, you can't be and you won't be. You have to accept the reality that H is dying, nothing you can do or think will change that in any way, and you're just along for the very scary ride."
Thursday, February 12, 2009
Hoping for colon cancer
H has an accumulating set of issues in addition to his baseline stuff: depression, bowel distress, loss of strength and stamina, fear of just about everything, frequent nausea, more mental slowness (again), etc. etc.
Talking with him last night, he blurted out, "Well, maybe my bowel trouble is colon cancer. I hope so...maybe adding one more thing will get me out of here more quickly."
Then he laughed a bit.
I said, "Honey, you were checked for colon cancer just a bit ago and you were OK. Besides, in your case, clearly it isn't about how many health issues you have...as you say, all of your dance cards are full...and besides, you've beat the odds again and again."
"Yea, but I doubt I could beat cancer...wouldn't want to, anyway."
Talking with him last night, he blurted out, "Well, maybe my bowel trouble is colon cancer. I hope so...maybe adding one more thing will get me out of here more quickly."
Then he laughed a bit.
I said, "Honey, you were checked for colon cancer just a bit ago and you were OK. Besides, in your case, clearly it isn't about how many health issues you have...as you say, all of your dance cards are full...and besides, you've beat the odds again and again."
"Yea, but I doubt I could beat cancer...wouldn't want to, anyway."
Wednesday, February 11, 2009
Uresolved
When H and I have had issues to deal with and we've gotten angry, usually there is some resolution to that tension. Someone takes responsibility, we agree to do something different, or one or both of us just says, "Yup, you're right." And mostly, something changes.
But now, instead of being resolved, well…it doesn't .
Recently, H got up from a nap after not having eaten all day…it was late, 9pm. I had just worked an 11 hour day and was making dinner: very tasty Reuben sandwiches with cole slaw and homemade baked potato chips. (!)
He was very upset about "sandwiches again for dinner" and "we've been having a lot of sandwiches." Uhhh, no…a few times in the past month. The night before I made a fabulous dinner, but he couldn't remember what we ate. Most of our meals are homemade meals.
So, tense words ensue and what we said doesn't matter. Unfortunately, H can't deal with me when I get angry anymore…. And he can't acknowledge the issue because he's so puzzled or he doesn't understand what the big deal is, so my anger doesn't abate.
There are many, many other examples like this, but more and more it involves a lack of resolution about the issue. Not just for me, but for us. We're not working on the issue together.
I need to get to the point where unresolved issues don't matter to me.
Honestly, I don't see how I can do that....
But now, instead of being resolved, well…it doesn't .
Recently, H got up from a nap after not having eaten all day…it was late, 9pm. I had just worked an 11 hour day and was making dinner: very tasty Reuben sandwiches with cole slaw and homemade baked potato chips. (!)
He was very upset about "sandwiches again for dinner" and "we've been having a lot of sandwiches." Uhhh, no…a few times in the past month. The night before I made a fabulous dinner, but he couldn't remember what we ate. Most of our meals are homemade meals.
So, tense words ensue and what we said doesn't matter. Unfortunately, H can't deal with me when I get angry anymore…. And he can't acknowledge the issue because he's so puzzled or he doesn't understand what the big deal is, so my anger doesn't abate.
There are many, many other examples like this, but more and more it involves a lack of resolution about the issue. Not just for me, but for us. We're not working on the issue together.
I need to get to the point where unresolved issues don't matter to me.
Honestly, I don't see how I can do that....
Wednesday, February 04, 2009
Burden snippets
As I've mentioned before, we thankfully have a house cleaning service and on "school nights, " I sleep in the guest room so I actually can get a good night's sleep. H asked me last night to make certain that my pillows were on "our" bed before they came to clean. I didn't ask why.
Some states have Death with Dignity laws and while I have mixed feelings about it, when my time comes I hope that I have the choice to end it if the alternative is a miserable, painful death. When H and I discussed this topic very recently, he said, "You just want me to die" and "It's a good thing they couldn't do that when I was so sick awhile ago."
One of our pets died last week…we had him for 15 years. His kidneys failed and we had to put him down. As I was driving us home, H turns to me crying and said, "Why do we treat animals better than humans? Why can't I just go to sleep?" All I could do was choke back the tears so I could see the road and gently squeeze his hand. I thought, "Yes, honey, I know how tired you are. Me too."
H takes >20 different meds each day…a total of at least 50 pills a day, plus a number of liquids. I've encouraged him to take care of the ordering and setting up because I think it's good mental exercise for him. I audit to make certain it's OK. But he can't figure it out anymore…he panics more often than not... and so I've tried to do it…even with a clear mind, it is too much for me. Time to bring in skilled nursing, which is sad and a relief to us both.
Some states have Death with Dignity laws and while I have mixed feelings about it, when my time comes I hope that I have the choice to end it if the alternative is a miserable, painful death. When H and I discussed this topic very recently, he said, "You just want me to die" and "It's a good thing they couldn't do that when I was so sick awhile ago."
One of our pets died last week…we had him for 15 years. His kidneys failed and we had to put him down. As I was driving us home, H turns to me crying and said, "Why do we treat animals better than humans? Why can't I just go to sleep?" All I could do was choke back the tears so I could see the road and gently squeeze his hand. I thought, "Yes, honey, I know how tired you are. Me too."
H takes >20 different meds each day…a total of at least 50 pills a day, plus a number of liquids. I've encouraged him to take care of the ordering and setting up because I think it's good mental exercise for him. I audit to make certain it's OK. But he can't figure it out anymore…he panics more often than not... and so I've tried to do it…even with a clear mind, it is too much for me. Time to bring in skilled nursing, which is sad and a relief to us both.
Monday, January 26, 2009
People in the house
We have people coming into our house on a somewhat regular basis...we have a cleaning service that comes in every two weeks (thankfully) and there are usually a few repairfolk coming and going on a somewhat regular basis.
Recently, we got a call about some permit issue related to some improvements that we made last Winter. Seems that the city didn't have a record that the inspections happended, yet we remember they did but can't find the paperwork.
So, the inspector has to come back.
These is the same inspector who H tells me wanted to use our bathroom as soon as he came into the house. Seems they were looking for a certain substance that, while approved for medical use in our state (and H needs and uses it with an Rx), is illegal in this country.
Maybe he just had to pee. I suggested this to H, but "that's just his excuse to go into the back of the house."
So, now H is afraid that they are coming back to the house again, not because the paperwork got lost, but because they are out to bust him and so they're going to be here collecting evidence.
Recently, the house cleaning crew has become suspect. "They keep having new people come over...they're just checking out the house. They're collecting evidence." And so, before they come over, we must scour the house of all visible trace.
I'm very sorry that H lives with so much fear and worry. (I have fears and worries too, but mostly about growing old and that it will get much worse with H over time.)
On one hand, I won't tell him that he's crazy (although I think he is by now) and on the other, I can't tell him that he is right. All I can say is, "Honey, it will be OK. I'll help you put things away."
Recently, we got a call about some permit issue related to some improvements that we made last Winter. Seems that the city didn't have a record that the inspections happended, yet we remember they did but can't find the paperwork.
So, the inspector has to come back.
These is the same inspector who H tells me wanted to use our bathroom as soon as he came into the house. Seems they were looking for a certain substance that, while approved for medical use in our state (and H needs and uses it with an Rx), is illegal in this country.
Maybe he just had to pee. I suggested this to H, but "that's just his excuse to go into the back of the house."
So, now H is afraid that they are coming back to the house again, not because the paperwork got lost, but because they are out to bust him and so they're going to be here collecting evidence.
Recently, the house cleaning crew has become suspect. "They keep having new people come over...they're just checking out the house. They're collecting evidence." And so, before they come over, we must scour the house of all visible trace.
I'm very sorry that H lives with so much fear and worry. (I have fears and worries too, but mostly about growing old and that it will get much worse with H over time.)
On one hand, I won't tell him that he's crazy (although I think he is by now) and on the other, I can't tell him that he is right. All I can say is, "Honey, it will be OK. I'll help you put things away."
Wednesday, January 14, 2009
Funhouse
When I was a kid, we used to go to the local carnival and they had a fun house. Dark, twisted hallways, mirrors, smoke, scary heads that pop out from no where, horrible noises...the ususal dark ride stuff. I always hated those because you never knew what was going to happen, but you knew that it was going to scare the **** out of you.
These days, while things are calmer...sense of resignation, perhaps...it still borders on the bizarre from time to time. And I don't know what to expect anymore.
H grabs me in the hallway, really, really upset looking...almost in tears.
"I have something important that I need to talk with you about...it's been bothering me a lot," he says.
I think "Oh boy, is this another relationship conversation?" But what I say instead is, "What's bothering you, honey?"
"Well, I've been watching this movie and the US government really DID cause 9/11 to happen. They let it happen, the b******s. I just knew that it couldn't be the terrorists...the government just wants to control us with fear to advance their agenda...."
OK, so I'll stop there with his narrative on this.
Another time he's visibly shaken and is telling me that he's having nightmares. So we are talking about that and then he starts telling me about watching CSI shows and shows on serial killers. And while he won't watch a horror or ghost movie with me like we used to (or even a tense movie at all with me because he "has enough nightmares"), he's clearly obsessing on death these days. And in some ways, he needs to confront it...even if on TV.
I'm finally learning to just hear what he has to say, not have any pre-conceived notions in my head about what he's going to say, and to not cut him off. The only way I know what is happening with him is if I get the unfiltered story. And so, I've shifted my internal monologue from "Oh, God, what is the issue now" to "I wonder what he's thinking." And when he says something, I just try to have an open mind and listen.
Keeps me saner.
But I really never know what to expect: it ranges from outright rage at simple things ("Dammit, you put WAAAAY too much food out for the dogs (insert much yelling about how I never listen to him)"), to complete contradictions in a single sentence, to multiple shows on serial killers (e.g, movies about them or documentaries about them) on the DVR, to a whimpering puddle at the thought of a government conspiracy.
Another step in my acceptance is that I just need to think of him as a child...sometimes they rant, they cry, are mad, are lost in fantasy land, or scare themselves silly.
Truth be told, it scares me too.
These days, while things are calmer...sense of resignation, perhaps...it still borders on the bizarre from time to time. And I don't know what to expect anymore.
H grabs me in the hallway, really, really upset looking...almost in tears.
"I have something important that I need to talk with you about...it's been bothering me a lot," he says.
I think "Oh boy, is this another relationship conversation?" But what I say instead is, "What's bothering you, honey?"
"Well, I've been watching this movie and the US government really DID cause 9/11 to happen. They let it happen, the b******s
OK, so I'll stop there with his narrative on this.
Another time he's visibly shaken and is telling me that he's having nightmares. So we are talking about that and then he starts telling me about watching CSI shows and shows on serial killers. And while he won't watch a horror or ghost movie with me like we used to (or even a tense movie at all with me because he "has enough nightmares"), he's clearly obsessing on death these days. And in some ways, he needs to confront it...even if on TV.
I'm finally learning to just hear what he has to say, not have any pre-conceived notions in my head about what he's going to say, and to not cut him off. The only way I know what is happening with him is if I get the unfiltered story. And so, I've shifted my internal monologue from "Oh, God, what is the issue now" to "I wonder what he's thinking." And when he says something, I just try to have an open mind and listen.
Keeps me saner.
But I really never know what to expect: it ranges from outright rage at simple things ("Dammit, you put WAAAAY too much food out for the dogs (insert much yelling about how I never listen to him)
Another step in my acceptance is that I just need to think of him as a child...sometimes they rant, they cry, are mad, are lost in fantasy land, or scare themselves silly.
Truth be told, it scares me too.
Friday, December 19, 2008
Control
Two of our long-time friends, T and C, have significant health issues.
T is in his late 50's and was in a very bad accident many years ago and is confined to a wheel chair. He is terrified of using the baseboard heaters in his house, even when guests come over to visit and everyone is up and about. It's been been cold and snowing here.
He rants about how dangerous the heaters are and yells at anyone who reasonably says, It's cold in here, "Well, that's just the way we live. If we can do it, so can you." Meanwhile his wife has a little space heater by her desk where she goes to get warm once in awhile.
We couldn't wait to leave.
C is 85 and has many joint replacement surgeries due to rehumetoid arthritis. She uses a walker now to get around. We went down to the garage to pick her up at the elevator. She came out of the elevator, I got out and opened the car door for her as she walked 20 feet past the car...walker shaking over the rough asphalt..."No, pick me up over there."
"I told you I don't like to be picked up here...you come over here right now!" A few back and forths...I walk over to her to help her to the car and she swats me away...now she's fuming and screaming, red tight face. This episode occured after we had gone to her apartment and she said she didn't like our haircuts, our hats, our generation, our opinions.... We were there to deliver her Christmas present and take her out to lunch.
There was no way that lunch was going to be any better, so we simply drove off.
T is in his late 50's and was in a very bad accident many years ago and is confined to a wheel chair. He is terrified of using the baseboard heaters in his house, even when guests come over to visit and everyone is up and about. It's been been cold and snowing here.
He rants about how dangerous the heaters are and yells at anyone who reasonably says, It's cold in here, "Well, that's just the way we live. If we can do it, so can you." Meanwhile his wife has a little space heater by her desk where she goes to get warm once in awhile.
We couldn't wait to leave.
C is 85 and has many joint replacement surgeries due to rehumetoid arthritis. She uses a walker now to get around. We went down to the garage to pick her up at the elevator. She came out of the elevator, I got out and opened the car door for her as she walked 20 feet past the car...walker shaking over the rough asphalt..."No, pick me up over there."
"I told you I don't like to be picked up here...you come over here right now!" A few back and forths...I walk over to her to help her to the car and she swats me away...now she's fuming and screaming, red tight face. This episode occured after we had gone to her apartment and she said she didn't like our haircuts, our hats, our generation, our opinions.... We were there to deliver her Christmas present and take her out to lunch.
There was no way that lunch was going to be any better, so we simply drove off.
Tuesday, December 09, 2008
Burnout = divorce
During dinner last night, I was chatting with H and he was after me for my "flat, sarcastic delivery" about how much Christmas costs every year and how I'm trying to manage that down for this year.
I said that I didn't mean to be sarcastic, but I'm just tired and burned out.
He looks at me intently and says, "Well, we should just get a divorce." And he goes on from there about an attorney, selling the house, whatever....blah, blah, blah.
I said in a flat, tho', not sarcastic voice, "Well, if that's what you want." Truth be told, at least this would be one way out of this mess.
He flies into another tirade about something related to whatever, whereby I get up from the dining room table and walk away.
What's striking to me is that this is the same M.O. that his family has: whenever I raise my experience and my struggles with caring for H, I get the consistent comment, (sigh) "Well, I guess that means divorce then."
While I understand that no one in the family will take H, what I don't understand is how little empathy there is for my struggles caring for him.
Why is it that saying something is hard for me causes these folks to jump to divorce?
Perhaps this is all just their guilt, but I think that the motives are much more pedestrian: money. They all know that I support H and without me, who will or can? If it's labelled divorce, then maybe he or they get a settlement?
Later in the evening, H is all mopey and affectionate. After a bit of TV, I go off to bed in the guest room.
At this point, I have to confess that I don't care much anymore, really.
I said that I didn't mean to be sarcastic, but I'm just tired and burned out.
He looks at me intently and says, "Well, we should just get a divorce." And he goes on from there about an attorney, selling the house, whatever....blah, blah, blah.
I said in a flat, tho', not sarcastic voice, "Well, if that's what you want." Truth be told, at least this would be one way out of this mess.
He flies into another tirade about something related to whatever, whereby I get up from the dining room table and walk away.
What's striking to me is that this is the same M.O. that his family has: whenever I raise my experience and my struggles with caring for H, I get the consistent comment, (sigh) "Well, I guess that means divorce then."
While I understand that no one in the family will take H, what I don't understand is how little empathy there is for my struggles caring for him.
Why is it that saying something is hard for me causes these folks to jump to divorce?
Perhaps this is all just their guilt, but I think that the motives are much more pedestrian: money. They all know that I support H and without me, who will or can? If it's labelled divorce, then maybe he or they get a settlement?
Later in the evening, H is all mopey and affectionate. After a bit of TV, I go off to bed in the guest room.
At this point, I have to confess that I don't care much anymore, really.
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