No more cleaning & nothing to say

As expected, H ran out of steam after a few days of proving how healthy he is by cleaning the house.

He's now back to sleeping most of the day and is marginally incoherent when I try to talk with him.

I find myself with nothing to say to him anymore. I find myself just not telling him things, like I've talked with his Dr. about his cognitive state, that I've talked with Place about him going there, that I've resumed my therapy appointments, that my job is a dead end for me (I think) and I have much anxiety about finding another one.

Now, this is in addition to how much I've been witholding about my emotional state from him. I realized awhile ago that I couldn't share that with him as it's just too scary for him...realistically, this fear comes from fear of losing me. I understand that because he is so vulnerable. But, in spite of just about the worst situation that I can imagine, he's not losing me entirely.

Over time, not only is his life shrinking, but our lives together are shrinking as we interact less and less about what is really going on with us. Very strange. He's telling me less and less because he wants to appear healthy; I'm telling him less and less because I just don't want to share.

Ah, such is the state of our marriage today. Very sad.

I know how we can improve our relationship, but right now, he won't go for that.

Time machine

It's one thing to see a still photo of yourself taken 15 or 20 years ago. It is entirely different to see a movie of yourself.

About 15 years ago, H & I had a commitment ceremony and we recorded it with a video camera that we bought for the occasion. H had the tape of this burned to DVD recently.

So, I didn’t really care to watch the ceremony again (I’ve seen it a few times and it is wonderful)…mostly because I felt so cheated, seeing H all strapping, handsome, very much in shape, and energetic. For H, it is a great reminder of our love and commitment. But for me, it just made me mad and sad because of what I’ve lost.

In addition to the ceremony, H had filmed us just hanging out, watching TV at home. It was great to see how we used to interact, the playfulness, joking, quick exchanges of witty repartee. We were so natural together, so much at ease; we did not have the burden that we now have.

I miss how we used to interact, when we joked, played, tickled, and just had fun together. When he used to be able to keep up with my wise cracking. When he used to be able to crack some of his own wise (sic). We had so much fun together then.

I’m sad for myself that I no longer have this funny, smart, sexy, wonderful man healthy .

And I’m sad for H because he is no longer that way.

It just seems that watching our history should be a pleasant, reinforcing experience. But it isn’t.

Even our past is tainted now.

Unconditional love

After talking with H about "going somewhere" (sic), life at home has been less tense and entirely predictable. I certainly feel much better and am more relaxed, more present. Lesson: I should have talked with him about this awhile ago; I held back due to not wanting to upset him.

I should know better by now. I did in fact upset him a great deal. His first reaction was that I'm divorcing him. He sees me wanting him to go somewhere as losing my love, not something I'm after as a result of my love for him.

But we both survived and life in all its mystery & glory just goes on.

Now, H is all about proving to me that he's not so sick, doesn't need so much care. He's been running around, cleaning the house, shampooing the carpets, dressing up during the day, etc.
There's this whole notion that if he can just prove that he is healthy, then I'll somehow change my mind. Practically speaking, it also means that he will withold important information from me, e.g, how he's feeling, whether he's fallen, etc.

He equates going somewhere, even a place that we both agree is wonderful, with "being thrown out onto the street" and losing my love.

He asked me, "Is cleaning the house enough?" Huh? Enough what?

I told him that I really appreciate the help with the house. But I'll love him whether he cleans or not. Whether he's sick or not. In fact, no matter what.

My love for him doesn't change. In fact, if I didn't love him I would not be having such a hard time with all this.

What he's trying to do is to prove how well & self-sufficient he is, but I already know better. It's not sustainable. He'll bust his booty for awhile and then collapse and sleep for several days. I have seen this cycle before.

Nothing that he does (save for maybe winnning a 10K race right now) will change my mind about what I think is the right thing for him (and for me).

How do you say (other than just saying it)? "My love for you is unconditional as it has been for the last almost 25 years. I brought up you going to X because I love you, not as a way to get rid of you. It isn't about divorce, it's about making our relationship better, you getting the care you need, and me focusing on my work. It's because I love you that I talk about these things. You don't have to earn my love or prove anything to me. Whatever you do doesn't change my mind that it is the right thing to happen."

"You don't want me here"

I finally had the conversation with H last night about going to a facility. Not a pleasant conversation, as expected. I came to the conclusion that I just had to say something as it has been eating at me for so long.

I presented it as, "I'd like you to consider the possibility of going to x for three reasons:

Our relationship is not what it couldbe. I'd like to be your partner again, not your caregiver and as long as I have care responsibilities, I can't.

Your care needs are increasing over time.

I need to focus on my work."

His reply, "You're breaking up with me."

"No, I'm not. It isn't about that. I'm burned out. I'm asking this because I love you."

He says, "I'm not going unless my doctor tells me."

"I've talked with him on and off the past several years about this. He's been willing to write the order 4 times this past year and I've said 'no'. I want you to condsider that you're sicker than you think you are...that you're in denial about it."

He's crying. "You said that you'd never make me leave my home, our home."

"I'm not making you leave. I'm asking you to consider it. Nothing will change here at the house. You can come visit on the weekends, maybe during the week even. The pets will be here, nothing will change."

"I've been stewing about this for the past year and a half. I've got others telling me that it is time and that they don't know how I can keep doing what I'm doing."

I encouraged him to think about it, to check it out with others, keeping in mind that others may not cop to it.

"Well, if I have to leave, I'm going to commit suicide. (Suicidal thoughts again.) I won't be able to survive anywhere else."

I told him that's not what I want. Place is a wonderful place, tho' admittedly, I would be frightened too if I were him.

He's pressing for someone to come in and care for him now, something that he's resisted for a long, long time. I told him that I didn't think that this would help as I've got to take care of the arrangements, etc. because he won't be able to do that part. In other words, no real relief for me.

Also, he's very suspicious of my motives and I pointed out that he's been more than a little paranoid recently...like accusing me of stealing from his savings account 3 times over the past year. I suggest that he just take what I'm saying at face value.

For the rest of the night, H is running about the house, doing chores, cleaning up, putting laundry away. He is trying to prove that he can help, that he's not that much of a burden.

Both of us crying from time to time and me holding him, telling him that I love him.

Dinner and bed. Not much else there. He's in a state of shock and I would be too. I'm tired and have had more than enough to drink.

This morning he gets up as I'm heading out for work (after a nice hot tub soak on a sunny spring morning for moi!). He's crying. Oh, God, I can't miss anymore work...

I look him in the eye and tell thim that I love him. And that I have to go to work.

He says, "You don't want me here."

"That's not what I said. That's your guilt saying that. I said it was for 3 reasons: our relationship is not what it could be, your care needs are increasing, & I need to focus on work. I did NOT say that I don't want you here. You are saying that, not me. I want you healthy and here, but that isn't going to happen at this point. I have to go to work, honey."

I hate leaving the house when he's crying.

I expected that he would be upset and it hurts me to see him cry, but I simply had to bring this up. There's a part of me that thinks I should have stayed home today, but I'm just not going to.

I am so tired of dealing with all of this stuff. And somehow, I have to focus at work.

The unbearable lightness of waiting...

I've been working up the courage to put H into a facility. There's been a shift from wondering "is this the right thing to do?"to "I'm going to do it, now when do I?" Really, it's "when do I talk with H about it?"

It's hard to describe, but I feel so much better knowing that I'm going to do it (as opposed to sitting on the horns of the dilemma all the time). I feel lighter, anticipatory...it feels right for me, even tho' I am nervous about how H will react.

So, I've talked with his Dr. and talked with the facility. They are ready for H at any point in the "near future." And Dr. is on board.

Now, I just need to talk with H about this. And I'd like to do it sooner rather than later. Don't know that there is any good time, there is just a time. H will likely be upset & angry...but I owe it to him and to myself to be honest.

This weekend, H was up for just a few hours during the day and then back to bed. He keeps telling me that he's tired of feeling bad, of being in pain. He's said this several times this weekend.

Oh, our cat of many years has cancer, it is incurable without heroics (and unclear that even heroics can help), and I don't want to put our kitty through that. Sigh. H and I have discussed this and he's way more upset than I am about this. I mean, I love our kitty and everything, but it is just more sickness in the house that I have to deal with from my perspective.

The countdown begins

Talked with H's doctor last night and told him what's on my mind.

Dr. agreed that the next time an opening comes up that he and I will discuss what is right for H. Given the history, admission is likely right, he says and, "I'm surprised that you've made it this far. You must love him very much." Yes.

In the meantime, I've got some other conversations to have with his other Drs. and with the nursing facility.

I know what the process is, but I don't quite know what to expect.

Looking for the courage

So, talking with my shrink last night about all this stuff again. Paraphrasing below...

He asks me just what is it that prevents me from doing what I know (at many levels) to be right: I can no longer live with H and he needs more care than I can provide. He needs to go to a facility.

1) I just don't know if it is the right thing to do. I may regret it.

"That is true for almost any decision in life. You just have to go with the best information that you have at the time, think through it, and then make the call. Maybe you'll regret it, maybe it will be the best thing ever for you and him. You just don't know. My belief is that it is right for you and most likely him and certainly for you two together in order to salvage what you can of your love/affection for one another."

2) Maybe he'll get better, although he hasn't in a long while. He has bad days, where he can't dial the phone, but days where he's almost cogent (at least when he's awake).

"That sounds like denial and bargaining to me. You've told me that he is slipping downhill over time and that he's getting more incoherent, paranoid, and incapable of self care. And that each time he goes into the hospital, he comes out worse cognitively."

3) I worry that my judgement is flawed, that I can't be objective about this (see #1).

"What have others, such as his family, your friends, your doctors said? You've told me that they all agree that it is time. They have seen this, you said. You said that you've all talked about it. You said that the Dr. was willing to write the order on 3 different occasions this last year. Don't you think that the Dr. is more objective than you, that he has more exposure to these types of situations?"

4) Fear.

"Fear of what?"

Fear that I won't ever be able to get the love that I need once he's gone. That I'm not worthy of love, somehow and that H is the best I can do. Fear that I'll be alone...but others do support me and love me and can be there for me, if I only ask them. I will miss him and his loyalty, companionship.

"OK. It is human to think that we're somehow not worthy of love...very human. It is not unique to you. Right now, though, you're both living in some kind of fantasy that what you have together is somehow working. Great, you have a loyal companion who doesn't meet your needs, who is slipping away into dementia, and whose time with you at home is risking your job."

OK, how about fear of being abandoned, of being alone...if I assert my needs over his (which is what we're talking about) and he goes away, it feels like I might die somehow. Not physically, mind you, but...we'll, it's hard to explain...like I can't make it without him by my side.

"That's just your childhood playing out. You're an adult capable of self care now...you've not only cared for yourself all these years, but you've also been caring for H all this time. You're the one who is working, who has friends, interests and is taking care of all of it. It will be far easier just to care for yourself once you get through this transition."

(The writer here demurs talking further about childhood.)

He's right. I'm waiting for the call from the Dr. and we'll put this in motion.

Once we get closer to the date, I'll be taking leave from work for a bit as it's going to be a rocky ride for a bit.

Goodnight and have a pleasant tomorrow.

Now, I'm stealing from him...

H calls me at work yesterday morning about 11 or so on his cel phone.

No greeting, yelling, "I only have $100 in my savings account. You told me last night you didn't know the balance...." I didn't.

So, I looked online at the banking record. "Oh, that's right, in December we agreed that some of that money should pay for the Christmas presents you charged...so I paid those in January."

"You lied to me, you (expletive deleted)," he yelled. "I wanted my money to do (my project) . Now, I'll never get to."

More swearing and yelling.

I pulled the phone away from my ear and said gently, "Now, sweetheart, we talked about this and I'm sorry if there was an understanding."

More yelling & swearing....

I said softly, "Honey, we'll put the money back into your account then, OK? I'm sorry that there is a misunderstanding."

More yelling & swearing. He hangs up on me.

I call him back...straight to voice mail. I left a soft-voiced message about how it was unfair to call me at work, yell at me, swear at me, and then hang up. Especially, since I'm so stressed about work right now and it was just a misunderstanding (meaning...he forgot what we agreed upon again). "We're going to talk about this when I get home," I said gently at the end of the message.
I left the same sotto voce voice mail on our home answering machine.

When I got home, he was asleep (typical) and after he got up I raised the issue gently with him.

He says, kinda yelling and getting more and more agitated, "This is the 3rd time that you've taken money from my account without asking me. I want the money for (my project) and you don't want me to do it, so you take my money."

I don't remember any time when I have taken money out of "his" account without him knowing and agreeing. Odd that we have had joint finances for over 20 years, but now he's talking about his money. Well, he's been doing that more and more recently.

Then he went on about how much of "his"money (SS disability) "I'm keeping," meaning how much goes into the house fund. We had agreed to the numbers a long time ago to make the budget work. I don't keep it, it helps pay for food, electricity, the mortgage, gas, cable TV, etc. Much appreciated since this is the only income he has.

I said, "Honey, we've been together almost 25 years and you're saying that now you don't trust me with money. This is the first time I've heard you say that. And I want to let you know just how much that hurts me, how disappointed I am, and how totally unfair that is to me. If you can't trust me by now, why are you here? Why am I here? I just want to remind you that we are on the same side."

I got all misty eyed and left the room, hurt. He never apologized or mentioned the conversation again.

H has been paranoid about others before and what they are doing (e.g., coming into our front yard and breaking the needles on a hedge that we have, our neighbors robbing banks or growing pot, ), but never me. This is getting really bad for my sanity.

This morning, I've left a message to talk with his primary doctor about getting Hadmitted the next time there is an opening to our favorite skilled nursing facility. Dr. will agree and then I'm going to be talking with H's family and then H as we get closer to the event.

Enough already.