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.

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."

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."

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."

Wednesday, February 11, 2009


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....

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.