Just enjoy him

As I've written here before, H's health has been up and down many times over the past few years. When he is very sick, the obvious focus is to get him well again. And when he is well, we both wonder how long until he gets sick again and we both try to recover from the last time he was sick.

When he became so sick a few years ago, when I started this blog, we all thought it was the end, but it wasn't. And last year, we thought so too. And so on, dating back some 10 years or so.

So, I was talking with my shrink about what do I do now that he is getting better again? How do you go from a crisis to it's OK again…how should I feel? H and I are both concerned that his VL will only stay low for awhile and then start to rise again…it's happened every time.

So, how do you go forward, knowing that this will likely happen again?

My shrink laughs and says, "What else can you do but love him and enjoy him? None of us knows when we're leaving this place. All we can do is love those we love and enjoy what time we have with them."

I remember when one of our pets was very sick with cancer. Now, the pet wasn't in pain (at least the vet didn't think so), so he sent us all home and told H and me: "Spend what time you can with him, just enjoy (your pet) while he is here with you. It will be time soon enough."

Focus on the moment and enjoy them while they're here. What else can we do?

3 goals, just 3 seemingly impossible goals

More visits from friends over the holidays. Our long-term friends give me the benefit of the doubt and want to have a conversation with me about where H is at. Those who see H regularly are very worried about him and see what I see. Those who don't are wondering WTF?

And so I am bringing some of them up to speed with my 3 goals and let's be realistic, he's dying…slowly. Yup, new meds…who knows how long. Been here before…death's doorstep and then a magic recovery. I will believe it when I see it.

My three goals are to do the best I can to ensure:

- His well being, so that he gets the medical and mental health care that he needs (as well as the practical things, like food and shelter)
-My well being, so that I can work and be emotionally more stable that I've been (maybe even find a way to enjoy life again)
-The well being of our relationship (I am rapidly giving up that there is any hope here at all and it breaks my heart)

I don't see how to solve the equation for all three goals here. Solving for one of these is hard enough. Right now, I can't seem to figure out how to address any of these.

In any case, it is just more of the same: more drama, more drama and I don't get a benefit from it. And it's all drama that gets in the way of me doing what I need to do so that my life works for me.

Issues about H consume my life (there is so much to do and so little payback), my emotional energy, and dare I say even my well being. My choices are to try to minimize what it costs me (in some way that I don't understand) while he is still here, get him placed (hope waning now), divorce him or him me, or just disappear, which seems remarkably appealing at this moment.

Regardless of how this plays out, I do know that I am done having this cost me so much, but I don't know what to do about that. I wish that I could just make it stop.

Reframing this Christmas

My best wishes to all of you for a Happy Holiday Season and, for those of you who celebrate it, a Merry Christmas!

After having two months off of work now (!), I've realized that it is harder to not place H than to place him. Rather than a clean set of boundaries and rules…created by a clean break (sic)... it is all a swirling mush of gray.

He'll have to go somewhere at some point, but in the meantime I need to get my needs met elsewhere and somehow deal with my grief and other issues while he continues to believe that our relationship can get better.

Good idea or not, I wear my heart on my sleeve most of the time. I am just not a good actor. It is hard to know how to be genuine when doing that hurts the man you love.

Snap! Caught that guilt tripping?

The answer is to just love him and be genuine, kind, and speak your truth. Realize that he is a child in many ways, can't meet your needs anymore, and just can't understand what is happening. Try to hide what you need to do that will hurt him or that he has no need to know. Yet...holding back in this way does not feel right after 25 years with this man.

H has been back from a visit out of town for about 6 weeks now. He has since spent 4 of those weeks in bed, first with seizures and now significant fatigue as his viral load goes up as his current antiviral med effectiveness wanes (again).

While I don't mean to be cruel, what happens with him doesn't matter in many ways. I believe that he will get sicker and die sooner rather than later and my life will go on and I will be the one that has to make it all work for me. I just can't allow what is happening with him to bring me to my knees emotionally, physically, & psychologically again.

My focus has to be take care of me. Nice sentiment this time of year, no?

When one goes out, the others stay lit

Each year, I care less and less about days of note: Christmas, our anniversary, our birthdays, Valentine's Day. And while I understand that days like these are difficult for many, what is hardest is that I just don't feel like celebrating with H anymore. Why celebrate when you are so profoundly unhappy?

Yet, H wants to celebrate and uses guilt as a way to try to get me there too. Doesn't work. The MO is that if you don't agree with whatever they want, then the guilt comes out to push you there. "You don't want a tree? You've never liked Christmas, it's always a struggle to get you to do anything. "

Now that the seizures are under control and the Holidays are here…no, I really don't want to get a tree and I really don't care about Christmas. More of the same....

Bit by bit our relationship deteriorates and I'm more content than I like, just watching it float by. No kisses in the morning, no kisses going to bed. Another piece gone and then another. Over time, as our life together continues to shrink, only the love remains...for now. I am worried that we will end up hating one another if this goes on.

What the hell am I doing here?

H was crying in the kitchen this morning, "Why is my life this way? I hate my life."

Indeed.

Guilt song trilogy

Low burn

H is coming home in a few days, after spending over two weeks at his sister's house out of state.

I've been sorta beginning to feel fondness for H the past few days…like "Yea, it would be nice to see him." Or even a fleeting, "I wish H were here to share this moment with me," or two.

The weight of my anger and resentment is much lower right now. And so I notice what love that I have for him more.

Before he left, I was so angry that I rarely felt love for him, just obligation and resentment. I am worried that the anger will come raging back when H returns. Without any change, it will.

I am not trying to steal from you

I was just talking with H a few minutes ago. He's asking me if he should find a place near his sister's out of state, "cuz I'm not ready for a hospice or for assisted living."

"Dr. says you are," I say.

"That's not what he told me. ..that was true a long awhile ago. But now you just want to get me out of the house, so that you can get it," he says.

I try to beg off of the topic until he gets home. I tell him that I still think that (place) is the right solution, or something like it because there are big issues here at home. That this isn't sustainable for me anymore. And that everyone seems to have their opinions.

"Then it is over," he says. "You said that this was for better or for worse. If I move down here, then it is divorce…. The amount of care you seem to think I need…well, that's ridiculous. You just want the house."

I object to the word ridiculous.

I beg off, tell him I love him, and say goodbye.

When he gets back, I will try to see what H and I can work out. Something has to change here…if he is doing so well, can he step up?

The bitter aftertaste of denial

I'm getting a sense that the family is minimizing H's disability and gathering the wagons…looking for a place for him to live away from our home and me. I can just hear them cackle about how good he is doing. In some ways, I can't blame them…he's not dying in front of them, after all.

And I know that H will do the best show that he can while he's on his visit. And I will be the bad guy in all of this, even though I've been a "saint" for so many, many years (his family's word). Now, they may think that I'm cheating him…he does. Sigh.

I've been planning on arranging having his family talk with his Dr. and also talk with my shrink. And to get a dementia baseline test done (essential). I guess that I feel a need to build the case…or, at least, smooth the waters?

Truth is, us continuing to live together is hard for me, but easier for everyone else. Living apart is easier for me, but harder for everyone else.

Why is everyone so certain that he doesn't need to go to a facility, that he can live on his own? I have seen little evidence that he can live on his own in the last 3+ years. Was he just being lazy? Why isn't he exhibiting those skills now?

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.

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?

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.

Waiting, waiting, & waiting

I've been in an odd state of transition for a long while now. Not really attached, not completely unattached, just floating and waiting.

About 3 years ago, H got very sick (again) and I was told he would die shortly. So, I got myself ready for this, as much as I think I could, and then he got better. And then he got worse. And then better. At one point, I was waiting for him to get much better, but that isn't happening, instead it is going the other way. So I am waiting for whatever may happen as I watch him slowly fade away. In many ways, I am on a drawn-out death vigil .

This is a tough wait as I have no idea what will happen when and how it will all play out. But, as a dear friend of mine has said, "Remember, it can always get worse," and I do believe that it will…it's just a question of in what way.

About 5 months ago, I interviewed for another job at the large company that I work for. The other group wants to hire me and I want to join their team, but there has been delays and so I wait and sit in a job I don't care about and has no future for me.

This one is easier as I can imagine the end, the transition into a new role and all that entails. This outcome will be very concrete and predictable, but has been in the air for a long time

And this leads me to the biggest wait for me: waiting to move on and have a life without the responsibility to care for someone so sick in addition to taking on the responsibilities for the things he can no longer do.

These are good lessons for me (I suppose); just hang out and see what happens. Enjoying being now, in the present with all its ambiguities, instead of looking forward into the future, which is just fantasy anyway. There are gifts in the here and now and if I'm looking ahead too much, I'll miss them.

But some days, I just want to push the river, to get to that next spot on the way…where I'm not waiting for anything or anyone.

Connections missed

• Neighborhood garden party this weekend given my one of our local lesbians; she's been doing this party for many years now and H and I have gone for many years as well. Except for this year and last year…I didn't feel like going either year.
  
  So H goes by himself. When he comes back, he talks about how neat it was to see all the gay couples, happy, in love, being physical with one another (kissing, holding hands, etc.). Silence ensues. He then goes on to tell me that he wants what they have…why can't we, he asks? "Maybe they have a better relationship than we do," I say.
  
  Also, since this is my second year of non-attendance, I get scolded that I just don't like her party and now she thinks so too.
  
  I want to say, "I'm just reminded of what I'm missing when I see healthy, happy gay couples and so I'd rather stay home than see that. It just makes me sad & angry. And I am so tired of everyone asking how is H's health, telling me how good you look given your health and telling me, 'I just don't know how you do it.'"
  
  But I say, "Can't you stop ragging on me? Why are you constantly after me? I'm tired of you picking at me all the time." Not the most loving response, but it's the best I can do. Is the truth any better here?
  
  He's very nice to me the rest of the evening.
  
  
• Voicemail at work today asking me if they should keep H on the waiting list for the nursing facility or remove him, "as it sounds like he is doing very well."
  
  
• Found out that an old flame of mine is now working nearby…a man with whom I had a huge connection. Not looking for nookie, just a friend. So, I drop him an email to get together for coffee to catch up on our respective lives. Silence ensues. Guess not.
  
  
• Sometimes, I have a hard time sleeping and so I go to sleep in our guest room. More often than not, I wake with morning wood. I haven't had morning wood when sleeping with H in many, many years....thought it was just age. Guess my body knows, huh.
  
  
• I’m floating right now, between jobs and very much feeling how far apart H and I really are. Well, I think that I'm finally coming out of denial enough that I feel just how disconnected we are. No anchors at work, no anchors at home, nada. Irritation at the ambiguity coupled with urgency on resolution…enough to make my head explode. Ahhh, Mondays!

Gaming & shrinking

Our life together has shrunk.

From a wide range of activities, friends, intellectual & prurient interests, hobbies, house projects, each having varyingly successful careers at different times, relocations to exotic places, our family of pets.

To what we are having for dinner, how he's feeling, how my job search is going, and most recently some rather distressing games on H's part.

I thank Jeff (comment in last entry) for pointing out that it's just anger escaping his body. I forget that from time to time. H is angry and he is also feeling guilty. If I were in his shoes, I would be as well.

While I understand, hearing things like "I sleep all weekend because you don't want to be around me," "you're embarassed to go out in public with me" and so on is really hard. There's this whole guilt tripping thing going on and outbursts of anger. Putting words in my mouth that basically position him as the victim and me as the guilty party in his victimhood.

A friend of mine refers to this as the "tyranny of the ill."

H has always wanted to be morally superior in all manners: "I'm a good boy, I know what is right, I do what is right (so that I won't get in trouble)." A family of origin issue for him.

And so that continues today. But in the past, there was so much more of our life together the moral superiority thing was small enough in comparison that it wasn't so bothersome.

And, the anniversary incident pushed me very far away and I am disengaging more and more emotionally. I don't think that was H's intent, but it is the result.

The end result is that there is little left for us but the gaming, the setting of the hook to see if I'll bite.

I am not engaging in the guilt tripping. I refuse to. I just smile and don't comment. What else is there to do? If I engage and take the bait, then it opens the door to more manipulation.

My belief is that me taking the bait less and less will result in him becoming less and less happy being at home.

My desparate hope is that it makes it more likely that H will willingly go to the facility. Although I have power of attorney and could "force" him there, I would prefer not to.

It is so very sad to see it shrink like it is. But it is what it is and I am doing the best I can to forgive myself, to forgive H, and to forgive all of our situation and past so that I can focus on loving him. I desperately wish that he would focus on forgiveness as well, but I don't see how that will happen with him at home.

588 and obligation

Latest bloodwork for H was good, VL of ~35K and the highest T cell count (588) since he got sick 10 years ago.

Without a long diatribe (must keep entries shorter....), I'm glad for the good bloodwork, but it doesn't really change what is happening at home and how "faded" he is. Faded in the cognitive & participating in life sense, not in the jeans sense.

I do not want the following to be said of me: “You are the type of man that would stay with someone for the rest of his life out of obligation.”

However, I have reason to be worried, I think.

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.