Looking back

Now a week out of the country on work travel with my extended team. In addition to the wonders of a more tolerant society who believe "live and let live," I've really enjoyed the break from the tedium of living with H and just how helpless and hopeless he is.

My team is astoundingly smart, funny, and passionate. Sometimes I don't feel that I belong, but that is my issue as I have clearly already been accepted.

Many nights out with all of them and obvious things to say: they are not only looking for an adventure…to expand their experience…but they are also able and willing to go after it. There is a keen desire for adventure and the ability to go after it. To have fun without the "my feet hurt," "I feel sick," "I need to lie down," or "I need you to make dinner for me."

So, we are in a strange city and go clubbing…men and women, straight and gay. It is just about having fun together without accommodation. Up steep narrow, twisting stairs, dancing on a crowded floor, walking a mile back to the hotel on rough cobblestone streets at 3am.

Maybe that is what I struggle with: the notion that he needs so much accommodation and I need a peer…someone who can keep up with me. Not that I'm running marathons, but still….

"There is a fine line between being noble and being a martyr." From the Alzheimer's' Moments blog.

So, you think that you're being noble…but is expressing your grief and whining being a martyr?

And for those who haven't experienced this slow, long painful goodbye...is missing what you once had and talking about it being a martyr?

Tension in the house

We have mildew in our bedroom closet.... Happens pretty every Fall/Winter and we treat it by spraying with Lysol. Works well, but smells a bit.

So, the other night H couldn't sleep in the bedroom due to the Lysol smell, but it didn't bother me, so I slept in our bedroom and he slept in the guest room.

Last night, while we were in the office, one of our cats starts meowing...he does that, he's a Siamese.

H says to the cat, "Oh, honey, are you upset?" Meow. "Are you upset because I slept in the guest room last night?" Meow. "Are you upset because there's so much tension in the house?" Meow.

Truth be told, you can say anything to this cat and he will respond with meow.

H says to me, "There, even the cats are upset with what's going on here."

What can I possibly say to that?

But what about them…

I was talking with H this morning over a late breakfast. He was telling me that he's been talking with his family about "arrangements." Something along the lines of 3 weeks at one sister's house, back home with some weekends with his local sister, then off to his parents for another 3 weeks or so.

I know that travelling is hard for him; being away from home is hard for him. But he isn't talking about that.

What he's telling me is that "mom and dad have their own issues…dad pretty much has to care for mom these days…and I would just be adding to that." "And (out of state sister), the last time I was there, the kids had issues because of (this or that) reason and I can't get my own bathroom there and you know how I plug the toilet sometimes." "And (local) sister, she has a full house and how can she have me there so much? She's got kids, pets, there's no privacy."

I don’t say anything other than, "Well, yes, they all have their own lives. Dad has made his own bed because he allows his sick wife to run his life. At least he's retired."

Not a surprise, but nothing about what I need in all this.

Can you tell I'm just a bit angry?

Paused, but not forgotten

Really, I am trying to keep posts shorter, but am failing right now.

I've been thinking and thinking and having a few brief conversations with H's family. There seems to be this misunderstanding that if I get a break in November and his local sister "takes" him 1 or 2 weekends a month that all will be happy for moi. Errrrrrr, no.

How could they really understand?

I understand that they WANT to see it this way as this makes it easier for them to deny what is happening to their brother. And to assuage their guilt.

But, I got the application in the mail today for (place) and I've called them to let them know that there will be a delay…a pause in the placement.

Maybe after H is with his sister out of state for a few weeks, they'll see how he's declined. Maybe they won't be able to see it. I don't know. My hope is that they do; if they don't, it's just denial IMHO.

I've decided that I also just need to get out of the middle. And at some level, I don't care if his family agrees with me or not; I'd like them to and to be supportive, but, it's not necessary. Just like, at some level, I can't expect H to agree with me.

While H is away, I'll get calls with his family and doctor set up. I'll also get his local sister to come to his doctor's office with me and talk with him. Heck, why not have them come to my psych appointments?

I'll just connect them directly to the experts and the family can argue with them and try their guilt tripping.

It is easier for his family to blame me than it is to look at how H has declined. I understand.

Then again, I keep coming home to a clean house, fed & exercised pets, and the evidence that he's eaten during food that he has prepared during the day. He is trying hard to show that he's not as impaired as I think he is…and as his doctor thinks he is.

On the latter front, I will schedule a dementia evaluation with a local expert whose number I just got today. Let's add more "proof" to the pudding, shall we?

This beautiful, sunny Fall morning H and I were in the hot tub. I told him that I was filing for Family Leave today and that it meant no pay for part of the time. He said, "Will you sell your car?" He is totally obsessed with me selling my car for some reason. Guess he thinks that all this is just a money problem.

It's easier to think that there's a money problem than to face what is really happening…that I'm burned out and can't cope anymore.

Oh, I submitted the formal paperwork for Leave this morning and spent the rest of the day feeling lighter and (formally) ignoring my job.

Now that I have your attention...

After a stormy late last week and weekend, it's calming down again.

So, now the family is rallied and taking H off my hands for awhile. I got scolded for acting without checking with them first, but, hey, they don't participate much anyway. The local sister is so guilt-ridden that she tells me that she's embarrassed to talk with me.

Yesterday, H went to his sister's in town for Sunday afternoon so I could "have a break." I slept the whole afternoon. I am so tired I can hardly focus at work today.

H is leaving for his other sister's place out of town in a week or so for 2 - 3 weeks.

I am still planning on filing for Family Medical Leave as I am so exhausted, I can hardly get out of bed. I feel that there is some risk to my career in doing this, but hey, I'm already in tepid-to-hot water, and FML is government-protected.

I DO know that if I stay and work, I won't be doing any better work than I have been doing and will likely do worse: my ability to concentrate is getting worse, my motivation about the work is non-existent, and my attitude continues to decline.

Hopefully, then, I'll be able to have some time off from work at the same time H is not at home. Not certain just what I'll be doing with all that time, but I likely will be sleeping a lot.

Clearly, his family is feeling some guilt and trying to hook me. I'm not letting them….

"You can't just send him away to die!" they said.

"He is dying anyway, you just don't see it. I see it every day."

"I just wish that he wasn't so terrified," his sister says.

"Me too. It's hard to see him so afraid."

They have heaped the guilt on "there's got to be an alternative to taking him away from his home and losing his independence," "when you marry someone, this is what it means (so it is divorce, then)," and "I would never do that to my husband."

To all that I said, "Stop talking divorce…not only is it not true, but it's not helpful. Look, I'm not the bad guy just because I can't cope anymore. Everyone is telling me what I should or should not be doing and feeling, but no one has been walking in my moccasins for 10 years."

While I want to be angry with them, I really don't have sufficient energy for that right now…conserve the energy for what matters.

All that I care about right now is 1) get H out of the house, even if just for a few weeks , to clear my head and rest (check) and 2) get a break from work (file tomorrow).

I haven't given up on placement for H, just a bit of a pause in the program.

Whining, whining, & whining

As I sit here thinking about what to write , I have to take myself to task a bit for whining in prior posts.

While I whine about how much I dislike my job, I have one that pays pretty well and provides the medical benefits on which H and I depend.

While I whine about having to do a lot for H, at least I am healthy enough to be able to do it.

While I whine about the toll that his illness takes on me (and him), it is also true that sickness is just a part of life and, of course, it is upsetting.

While I whine about just how long all this is taking (aka, that he is still alive), I do know that he is as unhappy as I am with this current situation.

I have resolved not to whine at home or to my friends about this anymore. So, y'all get it here.

But the other day, I was in a foul mood and H asks me, "What's wrong? You look dismayed, distressed...." I said, "I'm just not happy with my life right now. I hate my job and home is just depressing. When I'm here, all you do is sleep and I have to do everything from take care of the pets, to fixing the house, to paying bills, blah blah blah. It just isn't fair. Isn't there supposed to be more to life than this...?"

Since that conversation, it's pretty quiet around our house. H doesn't know what to do or say...neither do I. So, we just go on in the ways that we do.

I will say this, tho': I am glad that instead of whining, I told H the truth.

When he bitches me out

Projects around our house don't get done anymore. We had a major remodel about 3 years ago, but then H went into the hospital, had 6 or less months to live, and I lost all interest in doing anything around here. Except for the garden and the plants in the sunroom…my garden is my sanctuary.

H has been after me, quite vigorously, about "getting stuff around here done." After 3 or 4 conversations about the project (where I try to put it in the context of all that is going on, aka not a priority for moi), he starts it. Painting is what he loves. So he's started 2 painting projects recently. There is still blue tape on 3 walls and two windows and a wall is 2/3 rds a brand new, dark color, which I LOVE.

I am so not into working on our house…right now...when he is dying or at least very, very sick. I would love to do a project with him, but he can't stay out of bed for more than a few hours right now. How I miss our time together, getting stuff done around here.

I don't tell him all the reasons why I'm not into working on the house: time, energy, a problematic back, or, the real reason: how much I miss him that he is not there to do these things with. To accomplish a project, have some fun, and then have wild monkey sex. Oh, throw in some scotch and a bacon cheeseburger with fries and … well, our times together, working on our life together. Good times that I miss.

It is hard when he bitches me out for projects not getting done, like the painting. He's right: it desperately needs to get done. But it isn't about the house anymore. His distress is all about that HE can't do the projects anymore. It isn't about me. I can't possibly understand his anger at what is happening.

And I want to tell him why I don't have the heart or the motivation to have the work done. He can't even supervise a crew anymore…him, a master of conducting. And I won't point that out to him when he is worked up and angry at the world…if ever.

So, when he bitches me out, all I can do is agree that it needs to be done and tell him that I love him.

Back at the keyboard

So sorry for the length between posts recently, but a combo of visitors from out of town staying with us, vacation, and the inevitable dramas at work and at home have kept me crazy busy.

We had two friends stay with us, S & P (sic), for a little over a week, visiting from an unnamed red state. They are both sweethearts and we had a great time with them. It was great to have adults around the house to talk with.

I won't bore y'all with a recount of our activities, but I think the striking pieces about H during this time were twofold:

H was giving me grief about my drinking while we had guests in house. Now, I've been known to put back a few or even more than a few, but I was really pretty much of a lightweight when our guests were here (well, except for the fine scotch and tequila). After a bit of H's comments, asked him, "what's up with this?" After a bit of hemming and hawing, he confessed that he was jealous because he can't drink anymore due to his meds. Of course, I tried to be kind about this, and I told him that I was sorry he can't do that anymore and that it must be very frustrating, especially with scotch, which was our favorite drink for years.

We all went to the "gay area" in our town for a bit of shopping, mens watching, and sunshine…and trying to convince one of the guys, P, that he really needed a PA (we all would pay for it, after all)…no dice though. Anyway, H was really struggling to keep up with us walking. Not just huffing and puffing, but moving so very slowly, like one of those old men that shuffles down the street. At one point, we all realized that he was having trouble, so one of us stayed with him while the other two went off down the street.

The contrast of H, shuffling slowly down the street with a cane that didn't seem to help him, and everyone else on the street was frightening. Sometimes I just forget how ill he is and the comparison to other healthy people shocks me back into reality. Now, if I can just keep from getting angry when that reality intrudes on my little fantasy. I was wanting a day off of fun with our friends and then caregiving rears its ugly head again.