Strange disconnections

Today, I had to come into the office to do a few last things before I’m off for the next 3 months. It's very strange being here, knowing that I won't be coming in for awhile.

On one hand, I'm glad that I'm getting the break. On the other hand, I've been experiencing some profound sadness today. It's not just about work, I know that. But I've been denying for long enough that somehow I can still do the work and soldier on while also caring for H during his decline. And so, taking leave from work is another physical manifestation of how hard it is for me to be able to care for H over the years.

I talked with H on the phone and he's very unhappy being at his sister's: "It's a very full house, it's too hot/cold here, I don’t feel well, I miss you, I miss being a t home."

All I could do is tell him that it's only for a short while and that I miss him too. Well, what I miss is my memory of him. I don't miss the care that I have to provide, the responsibility that I've assumed, or his incessant questions first thing every morning.

Now, off to home for a nap and maybe Oprah.

Out the door

H left with his sister to go to the airport about a half an hour ago. H has a fair amount of anxiety about going, I can tell. A trip is stressful for him anyway, even without the drama going on. He almost forgot his carry on, which is nearly full with his medications for the next 2 - 3 weeks (really). He wants a label on it, "Carry On." He tries to use the little electronic label maker we have, but is too flustered to concentrate and type in the letters. I make the label and put it on the suitcase for him.

I have some anxiety about him, for some reason, not getting on the plane and me having to go fetch him from the airport. This happened about 10 years ago…he got confused, went to the wrong gate, took a nap and missed his flight. Even then, he was suffering from dementia, obviously. I so rarely get a break that it feels very surreal to have him gone and my irrational fear is that he doesn't go for some reason and I get no break.

To his credit, H packed all of his stuff and got himself ready for the trip. I helped a bit, on request, but he was very organized…if a bit anxious while packing. I think that he's worried about travelling, where I am emotionally right now (he also knows I'm on leave now), and what is going to happen…and who knows what else. I could see it in his face when I kissed him goodbye in the driveway. I smiled and told him I love him.

His sister was so very, very calm and pleasant this morning…good for both H and me. Now, she has kids and is used to having to get a family and their stuff from point a to point b, so one person should be easy. The difference between H and the kids is that she knows what each of the kids is capable of doing on their own. She doesn't know where H is...I don't think that she really believed that she should go to the gate with him, but I told her several times to make certain that he gets on the plane.

Today, I'm off work and am enjoying my second cup of coffee in a quiet house (except for the dishwasher humming in the kitchen). Not certain just what I'll do all day, but let's see what happens.

I do know that I won't be able to begin to relax until I get the call that he has arrived at his destination.

Shades of gray

It's pretty peaceful around here right now. Plans have been made for H to visit his sister in another state and his family had arranged what I would term "shuttle care," living in 4 different places over a 3 month period. A few weeks here, a few weeks there, etc.

They are panicking due to H's fears and especially their own. And, they are trying to help in the only way that they know how.

Now, I've done a fair amount of business travel and this schedule is tough even for a healthy guy like me. Coupled with they don't know that so much travel and change is very, very hard for H. I don't see how this would work for very long.

What's ironic here is that they are creating a sort of divorce, where they take H away for so much of the time. They don't seem to understand that I want H to go to (place) because then I can see him regularly, he gets the care he needs, and I can focus on work.

With H at (place), we can hopefully continue the best parts of our relationship without his health and care needs or my exhaustion getting in the way. I wish that they could see that I am acting out of love and with H at (place), we have the best chance of experiencing our love again

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.

Uh oh...

So, just got off the phone with H's sister and dad. Apparently, the whole family is in an uproar because I've "decided to send him off to die at a facility that is a 'cemetery'. People die there," they said. "Yes, they do die there. It's a hospice and nursing facility."

They are also upset because I have not taken some steps they wanted me to take some time ago to "reduce my burden." Translated: bring in some care from outside. I keep coming back to how this won't help me, but "if you had done that in the past, you might not be in this situation." "That may be true, but here is where I am," I say.

H is terrified they say. He "is still cogent enough to know that he's being sent off to die, that you're trying to get rid of him." And everyone is crying about this.

Yup, me too.

Sigh. I told them that I'm willing to consider other options, but I'm not certain what they are.

When I talked with them earlier, they weren't happy with my decision, but supported it. Now...guess it's sinking in a bit more and, of course, they don't want H to be terrified (neither do I), but he is very afraid and has talked with them all. I would be too.

And they chew on me for making a unilateral decision and presenting is as a fait accompi.

OK, so I walk through all this with them. How conflicted I am, how desparate I am, how this is bad for my health & his, how I just can't do this anymore, I'm at risk of getting fired, etc. Fine, you all recognize that I need help, so help me...I've been carrying this for 10 years.

"But you promised that he wouldn't go until he wasn't aware of where he is and that is what marriage is about."

"I'm sorry that I can't keep that promise. I shouldn't be making a promise to someone when they're crying, " I say.

Sadly, I agreed to put my arrangement on hold pending: looking at other places besides the "cemetery" (sic), letting H move into the other room (why this helps I don't know), and have a "family conference" about what we're going to do.

Funny, they never asked for a family conference before about him. Guilt raises its ugly head, no?

Coming home to a clean house

Must keep entries shorter….

Got home from work yesterday and found a very, very clean house. As in, I didn't know we still had a cleaning service. Not a service, of course, but H showing me how he can contribute.

I appreciate the help, as always, and tell him so. I also tell him that he doesn't have to do this for me to love him. I also tell him that this has happened before: I talk with him about going to (place) and for the next few days, he's all a whirlwind of activity. I predict that this his activity will wind down shortly, as it has in the past.

Very strange, day before yesterday, H didn't know what to do in the kitchen. Now the house is spotless (no telling how long it took for him to clean it up).

So, to briefly review the past week (whew!):

- Talked with his doctor and he agreed that H needs to go to (place) and will sign a leave authorization for me when the time comes.
- I talked with (place) and have the application in process (will mail today, hopefully)
- I talked with H about what is happening
- I talked with his mom and sisters about what is happening (no one is happy about this, of course, but they support my decision)
- I'm investigating alternatives to (place) as due diligence

And dreams: on a roller coaster and I hear a voice behind me, "This is where it's really scary." And then freefall, stomach in your mouth, and scary screaming and lots of joyous laughter.

My emotions are all over the map: Shell shocked, excited, guilty, sad, upset, elated, anxious, worried, upbeat, grief-striken at times, confident, tired, compassion. In some ways, I feel like a kid waiting for Christmas morning, except I've never felt guilty about being excited about Christmas.

Not backing off

I'm being as loving as I know how to be and absolutely holding my ground.

Overtime, H's acceptance is growing, but as you can imagine, he is very worried and sad about leaving his home of many, many years. He has a hard time adapting to a small change in schedule, let alone a move like this.

I am sad for both of us and afraid for him as well. But I do know it is what I must do, for both of us.

Yesterday, while we were talking about him leaving, he blurted out, "You can sell your car for someone to come in and take care of me."

"No, that isn't going to happen." I repeat, "It's not about the chores."
 
"What is it then?"
 
I go through the same messages again and I always end with:

"It's not that I want you out of my life," I say for the umpteenth time.

"You don't?" he asks with all the sincerity of someone who has never heard me say this before.

"No, I don't." I explain to him how I'll come visit, he can come home on some weekends, and that one big part of this is to help our relationship.

"Oh."

Rinse and repeat.

Yesterday, H was all chipper and eager to help me with dinner.

Later, he's helping me in the kitchen but doesn't know what to do. He needs me to tell him exactly what to do along the way: set the table (I have to tell him what to get), put water on the table, feed the cats, and cut the ears of corn up so that I can cook them. Oh, and make sure you get a small piece of corn on the cob for the dog (strange and messy, but true).

Later, there are three pieces of corn on the cob on the counter. "Ok, now you can cook corn for Frank (name changed to protect my canine) like you always do."

"What?" He's looking very confused right now. "But we don't cook the corn for Frank in there…." He's pointing to the pan of water.

"Right," I say. "One is for Frank and goes into the microwave; the others are for us and I'll cook those in the pan."

Only when I was that explicit did he knew what to do.

My poor sweetheart.

Freefall

The day after I talked with H's doctor I told H too.
 
I didn't want it to come out this way, but I blurted it out as he was ragging on me about stuff that doesn't matter anymore.
 
Anger, crying, bargaining, denial…he's been all over the map. I'm doing OK right now…a bit or more sad, but also emboldened. And afraid and excited.
 
He's screaming, "I'm not sick enough. I'm only 48…I can't go to a nursing home. You can't make me leave. We'll get someone to come in and help, so you don't have to make dinner…they can make dinner for you too. You promised me that you'd never make me leave my home. I've see the people at (place)…I'm not one of them!"
 
I don't say much…I just let him vent. I've already decided what has to happen. I need to get away and he needs to get care. Simply really.
 
This went on for the better part of a Saturday until around dinner time I said, "Honey, I don't want to talk about this anymore."
 
Sunday…

More crying. He's on the phone with his sister. I haven't told his family yet as I wanted to tell H first out of respect…but that backfired.

He keeps coming back to bringing someone into the house, but I’m not budging. Then he says he needs time to think, it's a surprise. Then, "I'll do anything to stay."
 
The clarity is amazing. I look at H directly in the eye with my hand over my heart and I tell him that I love him and that no matter what he says, I am convinced that the right thing is for us to not live together anymore. I've cared for him for 10 years and I can't do it anymore.
 
"You want a divorce," he says. I've heard this one before.
 
"That's how you frame it," I say as flatly as I can.
 
"You told me that you'd never make me leave my home."
 
"I'm sorry. I just can't do this anymore."
 
"When I leave, you'll have younger boyfriends here and I don't want that," he says.
 
"You have no idea what will happen when you're not here. Maybe I'll have some peace & quiet for the first time in 10 years, " I say. "I just don't want the responsibility anymore. I've done this for 10 years and that's enough."

I continue, "We're just poisoning what's left of our love. You need more care. I need to focus on work. Finally, there is nothing that you can say that will convince me that anything other than us not living together is the right thing for both of us. I've struggled with this for 3 plus years and I've thought about this a lot. Now, we can negotiate the terms, but it is the right thing to happen. I am absolutely convinced."
 
We spend the evening with me holding him on the couch watching TV, both of us crying from time to time.

Stepping off the edge

I met with H's doctor a few hours ago to discuss how I can't care for H anymore. It felt surreal to go to H's doctor's office without H.

"I agree," Dr. said, "I was there a year ago. He's pretty demented and we need to make certain he doesn't hurt himself."

"Thank you," I said. "I just can't do it anymore. My health is suffering, my job performance is bad, I'm an emotional wreck most of the time."

He said, "I've seen this with my other patients, straight, gay, whatever, doesn't matter. Most spouses can only last a few years once someone starts slipping into dementia. You go from partner to sort of a guardian and it's exhausting and stressful to watch someone you love decline…not to mention that the sick person needs more care than the partner can provide."

"Yea, and what's bizarre is that H still thinks that I am his partner…."

"He has no idea anymore," Dr. said.

"When H and I have talked about him going to awhile ago, he said, 'You just want to divorce me.' No, I’m doing this because I love him," I say with tears in my eyes.

"Of course you do…I've known you guys for over 6 years now and I know that. What did you have in mind?"

I explained that I was looking to get H into a facility that specializes in HIV & dementia. But I was worried because H keeps telling me that he's not sick enough.

"He is though," Dr. said. "Usually, people who are so demented don't think anything is wrong with them."

I also asked Dr. about supporting me taking a leave from work (he has to sign paperwork). "Yes, of course."

So, I have talked with the place to get the application process restarted (from 2005). Once some firmer dates are in place (they think maybe he can be admitted in 2 - 3 weeks!), I'll file the formal request for family leave, call his family as well, and (the hard one) talk with H about what is going to happen.

I spent the rest of the day walking through my favorite park to enjoy the Fall sunshine and leaf colors.

Guess my best wasn't good enough

One of the not-surprising impacts that H's illness has had on me the past few years is that my ability to work is greatly reduced. Not from the time perspective, but of having focus, energy, motivation, productivity, initiative, & creativity...the merit badges in my company.

How could his illness not affect my emotional state? And how could my emotional state not affect my work (or my ability to just do work)?

It is so frustrating to me that I am so hindered by what is happening with H. I am performing so far below my abilities. The job that I’m in, which I should be able to just nail as it is one of the easier jobs that I've had in a long while, seems incredibly difficult for me.

It's not just depression. It's exhaustion too and a whole spinning, flaming ball of other strong emotions.

Regardless of the emotional state, my best at this point is not good enough for what the company expects from me (especially since I've done much harder things here prior). I just want to say, to scream from my desk, "I can do better…it's not because I'm lazy or clueless, it's because of this difficult personal issue that I have…which just drags on and on."

They have been more than accommodating and I'm running out of time here. The cool thing is that it will take awhile to fire me for performance (don't you love big companies?), so I have a bit of maneuvering room.

And so, I have two key goals for the remainder of this year (if I do nothing else):

- Not live with H anymore and get him into a facility where he can get the care he needs
- Get an extended (measured in months) break (take leave) from my job so I can rest and sort myself out

Given my mental and emotional state right now, doing well at work is not even on the long list of things I care about...but I DO care about it as a matter of pride, of identity, of reputation. I just don't have the energy to deliver and it's not the biggest fish I have to fry right now.

I will say, tho', that I will continue to blog as that is my 3rd goal for this year.

An upcoming appointment

On Friday this week, I have an appointment to talk with H's doctor (without H being there).

My plan is to talk with his doctor about how I just can't do this anymore…I just can't live with H anymore.

H said that he won't go until his doctor tells him. OK.

What goodwill and love that we have left is being poisoned. The situation is bad for our relationship and I don't want to get PO'd and then just kick H out of the house.

I believe that H needs more care than he gets or than he can admit to needing.

I need to focus on work. I am still in trouble here and don’t know if I can pull it out. I am not certain if I really care all that much anymore either way.

As long as we are living together, I can't help but be his caregiver and I am exhausted. Maybe it's just respite care that I need…but I doubt it. Well, maybe if I could find respite care for 6 months and then decide…ha!

In any case, I need a break from H and I need a break from work at the same time. But first things first….

I am worried that this will hurt his feelings, but I don't know what else to do. I'm typically an emotional wreck, my health is suffering, my work is suffering…life does not have to be like this. And so I have to change it because he cannot.

Do I have the strength to see this through (with thanks to Robert)? I think so…I’m going to make a run at it.

But when I step back from my anxiety and my worries about how H will see this, I feel like it is the right thing to do. And when I entertain the fantasy of him living somewhere else and me free from some of the responsibility (and yet still able to love him), I feel lighter and even, dare I say, optimistic about life again.

Why go?

Since we had the 4x per week conversation a day or so ago, home has been bleak. H is sleeping a lot and moping about the house, occasionally saying things like, "Well, maybe I'll go to Afghanistan and be a suicide bomber. That seems like a quick way to die."

While I want to say, "Oh, honey, you must be very upset to be talking about suicide. Let's get you to the doctor," I don't say anything.

I've been trying to get him to a Dr. about his depression for some time.

Now he is talking about suicide again…at what point do you intervene? (Now, I've already called his doctor.)

And at work, I've been getting email from H about how to deal with a spouse with depression, that it's not them, it's a disease and etc.

Work too seems rather meaningless…

It just seems like there is so much pressure right now that I just want to walk away from home and from work. Not just in the romantic "ride off into the sunset," but in the "I just don't want to deal with all this anymore. It costs too much and is not fulfilling at all. It just isn't worth it."

And it isn't depression on my part, I don't think.

It's more about what isn't working for me. Maybe it's just a time to shed the stuff that doesn't work anymore. It's about cutting losses.

Now, I know myself well enough that the drastic solution (leaving) is easier than waiting and waiting. Sometimes, tho', the drastic solution is not the right one long term; besides, H needs care and I can't just walk away from that.

"Why go home?" Eddie Vedder from Pearl Jam asks, plaintively. Why indeed?

Four times a week for all my men

Yesterday, I was home early from work and was paying bills while H watched Oprah. Dr. Oz, her medical guy, was talking about men's health issues.

Not much new there, but then: for a man's health, the optimum number of times a week for sex is four. Yup, four. (All the men in the audience are smiling, predictably.)

H says, "There. I told you so."

"What?"

"See, we should be having more sex," he says.

"Hmmmm…." I'm writing checks, juggling this month's bills.

He presses on and after a few moments of nagging, I say, "I wish that I was with someone that I WANTED to have sex with 4 times a week."

At this point, I have to state my truth or I will go crazy.

Now my gentle readers know that sex has been an issue for H and me since he got sick. He's not, er ah, functional anymore and it just makes me sad to see him look so sick. So, I have just given up on it and, for now, I'm OK with that. In fact, it's just upsets me to even try anymore.

He keeps pressing and talks about how his needs aren't getting met.

I'm trying not to go there again, but I say, "Honey, you aren't the only one that has needs that aren't getting met, sexual or otherwise, but you know, I just don't hassle you about that anymore…because I know you can't meet my needs."

"What needs?" he asks.

Here we go again. We have had this conversation at least a few times in the past month or so.

"I need a healthy, functional partner who can participate in my life with me. I have been caring for you for 11 years now and you sleep and feel sick most of the time. I have to do everything for you. At this point I am so tired, so burned out and depressed, it's all I can do to get my butt to work and when I leave work, it's all I can do to just not drive off into the sunset and not come home," I say.

Now, I don't tell him all the issues that I have…doesn't matter. He won't remember most of this tomorrow anyway.

"Honey, you're living in a fantasy that our relationship can be anything other than what it is as long as we are living together…we've talked about this many, many times," I continue. "I love you and care about you, but that part of our relationship is over for me."

"Well, that means I should leave then," he says.

"That's up to you."

"Then why am I here," he asks. "Why are you here?"

"Because I love you and want you to have a nice home in your last days."

"Thank you," he says softly, looking at the floor.

A few more back and forths about "maybe hypnosis would help" & "aren't you even willing to try anymore" & "don't you want to be helped?"

"No, I don't need to be helped, thank you," I say. "Drop it." Frankly, I don't feel like I need help. What I need is not something that he can provide.

A little while ago, H told me that unless we have sex he will commit suicide…that there is no reason for living for him. Now, I can appreciate his pain and I do agree that sex is important, but emotional blackmail doesn't work for me…it just makes me angry and confirms my desire, née my need, to get away from him.

A shorter run, then

A recent article stated that family caregivers of Alzheimer's sufferers are under so much stress that their role of caregiving actually shortens their lives by 4 - 8 years.

A friend shared this article with me and it was upsetting to say the least. Now, H doesn't have Alzheimer's, but his dementia is bad and is getting worse over time, and, his care needs are doing nothing but increasing. Minimally, his mental symptoms won't be getting any better.

I was upset and so I shared this article with H. His response was a flat, "I'm not surprised," and then he went back to reading his email. No, "I can see why you're upset, I’m sorry that this is so hard for you, I'd be afraid too…". Nada.

I'm still trying to learn not to expect support from H (part of my acceptance work), but how do you not automatically expect support from your spouse? When they expect you to provide support for them? How do you not share what you find out, experience, or feel?

While I can't claim that my life is being ruled by a crazy person (he is just sleeping more and more these days), I can now say with scientific certainty that my life is being shortened by living with a crazy person.