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.

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."

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."

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."

Uresolved

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....

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.

People in the house

We have people coming into our house on a somewhat regular basis...we have a cleaning service that comes in every two weeks (thankfully) and there are usually a few repairfolk coming and going on a somewhat regular basis.

Recently, we got a call about some permit issue related to some improvements that we made last Winter. Seems that the city didn't have a record that the inspections happended, yet we remember they did but can't find the paperwork.

So, the inspector has to come back.

These is the same inspector who H tells me wanted to use our bathroom as soon as he came into the house. Seems they were looking for a certain substance that, while approved for medical use in our state (and H needs and uses it with an Rx), is illegal in this country.

Maybe he just had to pee. I suggested this to H, but "that's just his excuse to go into the back of the house."

So, now H is afraid that they are coming back to the house again, not because the paperwork got lost, but because they are out to bust him and so they're going to be here collecting evidence.

Recently, the house cleaning crew has become suspect. "They keep having new people come over...they're just checking out the house. They're collecting evidence." And so, before they come over, we must scour the house of all visible trace.

I'm very sorry that H lives with so much fear and worry. (I have fears and worries too, but mostly about growing old and that it will get much worse with H over time.)

On one hand, I won't tell him that he's crazy (although I think he is by now) and on the other, I can't tell him that he is right. All I can say is, "Honey, it will be OK. I'll help you put things away."

Funhouse

When I was a kid, we used to go to the local carnival and they had a fun house. Dark, twisted hallways, mirrors, smoke, scary heads that pop out from no where, horrible noises...the ususal dark ride stuff. I always hated those because you never knew what was going to happen, but you knew that it was going to scare the **** out of you.

These days, while things are calmer...sense of resignation, perhaps...it still borders on the bizarre from time to time. And I don't know what to expect anymore.

H grabs me in the hallway, really, really upset looking...almost in tears.

"I have something important that I need to talk with you about...it's been bothering me a lot," he says.

I think "Oh boy, is this another relationship conversation?" But what I say instead is, "What's bothering you, honey?"

"Well, I've been watching this movie and the US government really DID cause 9/11 to happen. They let it happen, the b******s. I just knew that it couldn't be the terrorists...the government just wants to control us with fear to advance their agenda...."

OK, so I'll stop there with his narrative on this.

Another time he's visibly shaken and is telling me that he's having nightmares. So we are talking about that and then he starts telling me about watching CSI shows and shows on serial killers. And while he won't watch a horror or ghost movie with me like we used to (or even a tense movie at all with me because he "has enough nightmares"), he's clearly obsessing on death these days. And in some ways, he needs to confront it...even if on TV.

I'm finally learning to just hear what he has to say, not have any pre-conceived notions in my head about what he's going to say, and to not cut him off. The only way I know what is happening with him is if I get the unfiltered story. And so, I've shifted my internal monologue from "Oh, God, what is the issue now" to "I wonder what he's thinking." And when he says something, I just try to have an open mind and listen.

Keeps me saner.

But I really never know what to expect: it ranges from outright rage at simple things ("Dammit, you put WAAAAY too much food out for the dogs (insert much yelling about how I never listen to him)"), to complete contradictions in a single sentence, to multiple shows on serial killers (e.g, movies about them or documentaries about them) on the DVR, to a whimpering puddle at the thought of a government conspiracy.

Another step in my acceptance is that I just need to think of him as a child...sometimes they rant, they cry, are mad, are lost in fantasy land, or scare themselves silly.

Truth be told, it scares me too.

Control

Two of our long-time friends, T and C, have significant health issues.

T is in his late 50's and was in a very bad accident many years ago and is confined to a wheel chair. He is terrified of using the baseboard heaters in his house, even when guests come over to visit and everyone is up and about. It's been been cold and snowing here.

He rants about how dangerous the heaters are and yells at anyone who reasonably says, It's cold in here, "Well, that's just the way we live. If we can do it, so can you." Meanwhile his wife has a little space heater by her desk where she goes to get warm once in awhile.

We couldn't wait to leave.

C is 85 and has many joint replacement surgeries due to rehumetoid arthritis. She uses a walker now to get around. We went down to the garage to pick her up at the elevator. She came out of the elevator, I got out and opened the car door for her as she walked 20 feet past the car...walker shaking over the rough asphalt..."No, pick me up over there."

"I told you I don't like to be picked up here...you come over here right now!" A few back and forths...I walk over to her to help her to the car and she swats me away...now she's fuming and screaming, red tight face. This episode occured after we had gone to her apartment and she said she didn't like our haircuts, our hats, our generation, our opinions.... We were there to deliver her Christmas present and take her out to lunch.

There was no way that lunch was going to be any better, so we simply drove off.

Burnout = divorce

During dinner last night, I was chatting with H and he was after me for my "flat, sarcastic delivery" about how much Christmas costs every year and how I'm trying to manage that down for this year.

I said that I didn't mean to be sarcastic, but I'm just tired and burned out.

He looks at me intently and says, "Well, we should just get a divorce." And he goes on from there about an attorney, selling the house, whatever....blah, blah, blah.

I said in a flat, tho', not sarcastic voice, "Well, if that's what you want." Truth be told, at least this would be one way out of this mess.

He flies into another tirade about something related to whatever, whereby I get up from the dining room table and walk away.

What's striking to me is that this is the same M.O. that his family has: whenever I raise my experience and my struggles with caring for H, I get the consistent comment, (sigh) "Well, I guess that means divorce then."

While I understand that no one in the family will take H, what I don't understand is how little empathy there is for my struggles caring for him.

Why is it that saying something is hard for me causes these folks to jump to divorce?

Perhaps this is all just their guilt, but I think that the motives are much more pedestrian: money. They all know that I support H and without me, who will or can? If it's labelled divorce, then maybe he or they get a settlement?

Later in the evening, H is all mopey and affectionate. After a bit of TV, I go off to bed in the guest room.

At this point, I have to confess that I don't care much anymore, really.

Bleak house, redux

How silly of me to think that things would be different, just because H is visiting his family for a few weeks.

While he's not been ill while travelling, somehow I thought that all would be happiness while he is gone, a chance for me to refresh and regroup and, mostly, to enjoy myself.

I don't have the seething anger and resentment with him gone, I don't have to listen him fret, I don't have to do anything for him, and I no longer hear the screaming in my head, "I am so done with this. You need to go away."

And right now, I do notice great relief from not carrying that load. I am grateful for the break.

But being here at home alone show me how wacked out I am with H just drowns out everything else in my life. And while I don't want to pin it all on H, I believe that my life would be very different if he hadn't gotten ill or if he had just simply died some years ago.

Truth be told, I've just felt empty, barren, since he left…no desire to do much of anything except drink, watch those compelling videos, and go to the gym. It's not depression; it's not a mood, it's an empty bucket.

With him gone, the issues I have with my life sting more and I oddly feel both urgency and resignation.

Whether he is here or not, I'm lonely, I drink too much, I'm tired of being celibate, I'm going to be 50 in a few months, and I'm just tired. Some is existential anxiety, but much is just asingleman's life needing some attention.

"Like the deserts miss the rain…"

Quiet house, quiet mind

It's been a long time since the house was this quiet and even longer since I've felt any sort of quiet in my head. H has been gone only a few days now, but the relief I feel is palpable.

When I returned from Europe last week, I experienced the opposite. As soon as the cab pulled up in our driveway, my back, neck, even my legs began their characteristic chronic aching. While I was gone I had a bit of soreness from walking so much, but nothing as systemic as what I experienced upon my return.

Once I saw H disappear down the jetway, those aches and pains mostly left me again.

While I always knew that my responsibilities for H weighed on me, I've never been aware enough to feel that weight come and go so suddenly. Such is the cost of caring for someone you love who is slipping into dementia and slowly leaving this planet before your very eyes.

Now, with H out of the house and a long horizon until his return, I can exhale and my body is actually relaxing. My deep tissue massage actually is deep now.

Aside from the obvious benefit of not having to provide care for H while he is gone, what is striking is the just how quiet the house is and how quiet I feel, along with the belated realization that my life is, in fact, all about me and what I need. The clarity is startling...my gentle readers know that this is obvious, but I have clearly lost much perspective in all of this.

And while I can make a consicous effort to sacrifice my time and energy to care for someone I love, I am enjoying this peace far too much to want him to return...ever.

Bleak house

Coming back from a week out of the country was as expected, maybe a little worse.

H had a "bad week," he said. He has some minor episodes of seizures, which has happened before, but he didn't go to the doctor or call his sister, who lives nearby. He didn't want to call as it "would have meant a trip to the hospital."

He said he was depressed and slept most of the time; lonely too, he said. Hardly ate because he "just gets confused cooking" and didn't go out to eat very much. Happily he had a few friends come visit.

While I hear the voice screaming in my head, "I'm done with this," it doesn't mean that I can't feel sympathy for this sad, sick man. And I do. And so, I can't or won't scream at him.

H leaves tomorrow for two weeks out of town and I'm glad. I shall be able to have some peace and quiet and relief from the funhouse that is our home now.

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?

I want you to be there for me

While there is ample evidence that he's simply not capable of meeting my needs, I still want him to be there for me as I struggle through his waning days. But he simply can't be there in the way that I need, but that doesn't stop me from wanting it.

Oh sure, I can intellectually understand how he's not capable anymore, that H is my patient, my job, if you will…and not my partner anymore. But my heart still yearns for him to be what he once was and to be there for me as he once was, plain and simple. How could I not?

And if we were living apart, say with H in a facility, the physical distance would be the evidence I need to really get that he is no longer there for me, literally and figuratively.

H and I continuing to live together has slowed down my grieving and transition in many ways...there is no marker like moving away or death, just a long grind down to the inevitable.

A vignette from last night (this has happened many times in the past month or two):

So last night, I'm sitting on the couch watching TV with H, holding his hand. Suddenly, his hand gets very sweaty, then very cold, and he's stopped breathing. I touch his shoulder, once, twice...nothing...Oh God is this it?...then a firm push and say his name. He comes to and says, "Oh, I must have fallen asleep."

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?

Anger management

The husband of a dear friend of mine has Parkinson's and the progression is limiting what he can do more and more. My friend told me that she finds herself getting so mad that her husband can't do even simple things (like the dishes) anymore...not just irritated mad, but raging mad. She asked me what I thought she should do and I said, "Don't expect anything from him anymore."

I was talking with H the other night and somehow we got onto the topic of anger, my anger. He's pressing me, what am I so angry about? "That I lost my partner, my lover, that I'm exhausted from all this." "Well," he says, "you can't be so angry and still love me. You better talk with your therapist about this (he's yelling now and goes on for about 5 minutes in a rage)." Everytime I try to say something, he cuts me off and yells louder.

He's screaming now about how our relationship isn't what it could be, should be and that this is my fault. I tell him that he's living in a fantasy world...out relationship has changed, period. More yelling, "You're the one living the fantasy...you go off to work everyday, make money, have somewhere to go...I'm hear all day, alone." He's crying now.

Don't expect anything from him anymore. Don't expect him to understand.

H's has been having dreams with lots of crying, he says. And lots of yelling. I'm not in those dreams.

Next month I'll be travelling for a week and H will be visiting family for two weeks. So, for ~3 weeks I won't see him. I need to get used to him not being in my life both literally and figuratively. It will be a very welcome break.

He's not your partner anymore

I really struggle with how to view H these days. While I understand that he is sick, I keep expecting him... nee keep needing him...to be my partner. As I've written here before, since we still live in the same house that we bought 20 years ago, I just keep hoping and filling in blanks for him.

So, I'm whining in therapy about my disappointment about not getting my needs met and how to deal with H's issues as I go out and get my needs met (nothing too salacious, just taking some nights off to visit with friends).

Now, it's hard to even do simple things without him as he gets pissed and mopes about that I don't love him, that I’m ashamed of him, that I am tired of him, and "we never do anything together anymore." Right, doing things with him is not fun for me, it is work because he is so high maintenance.

And I'm whining about how H continues to be after sex and talks about how our relationship isn't what it used to be. Yup.

At some point, I blurt out, "Well, I just think that I should be able to talk with my partner and work through these issues…"

My therapist leans forward and says, "He's not your partner anymore. He just can't be. You are in a fantasy that he is or ever will be again. Whatever he is to you, he is no longer your partner in the way that you need one. Sure you love him and care about him, but based on everything that you've told me for the past 4 years, he will never be able to give you what you need. In fact, it continues to go the other way."

What needs to shift for me is to view him as the sad, sick little man that he's become. Maybe I won't be so angry at him if I just accept this.

And maybe, just maybe, if I can think of him differently, I can begin to move on in a way that honors him and the love that we have while still getting what I need.

Gifts and gratitude

I was talking with a friend of ours who has known H longer than I have. I surprised myself when I told her about the gifts that I am receiving as a result of H's illness and my time caring for him. I've certainly shared my grousing in this blog and so it makes sense that I'd share my gifts and gratitude as well.

Let's start with compassion. Before I met H (and even for awhile afterwards), I wasn't the most compassionate man. I wasn't mean or selfish, per se, but I was definitely not patient and compassionate when considering others' experience. Now, while I do get impatient with my situation with H, I find myself being way more sympathetic and patient with H and other people overall. Not just the disadvantaged or ill, but with everyone. In many ways, this experience has taught me to love in a way that I didn't expect: unconditionally.

Respect for mortality. Before H got sick I hadn't had much experience with people that I love getting ill, but in the past 10 years or so, I have seen what it means to be in poor health. As a result, I convinced myself to stop smoking some years ago. And most importantly, I feel deep gratitude for my good health pretty much every day and I try to do the right thing. And I realize just how precious good health is.

Slowing down. In my work, we are racing constantly…racing with the market, with other groups in the company, with our peers; fast paced doesn't cover it. But when you need to patiently explain the same thing over and over again, it helps to have patience…to gear yourself to the other's pace. While I can't claim that I've nailed this one yet, it does me no good to be impatient with H and I'm finding that it just makes life more stressful to be impatient all of the time.

Forgiveness. Can't say that I've got this one nailed down either. But I can say that I at least understand how important it is: not forgiving others just gets in the way of me loving them. And not forgiving myself just keeps me stuck in regret and pain.

Would I want to repeat this experience? No! Please, no!

But what is it worth to learn how to love unconditionally, to respect our health and bodies, to slow down, to forgive, and to be grateful?

Counseling our marriage

Up early today and busy with getting ready for a house project that involved moving some furniture, etc. Great anxiety for H as "someone is coming early in the morning and I have to have my breakfast made before they get here." So, we're both up early today.

I'm sweeping and just moving stuff around and H asks me, "Can we get some marriage counseling? I don't want to be here if we're not having sex."

"Uhhhh, sure," I answer, but not meaning it. He'll likely forget he asked me about this and I don't really care much anymore about the outcome anyway. Frankly, I would prefer to live alone and have wanted to for many years now.

And I didn't say what I was thinking, "I don't want to be here at all anymore either. I told you I was done years ago and I've said that over and over again. What part of "I'm done" don't you get?"

His question did make me sad, very sad. Our time as lovers is over and, even tho' I know this to be true, I'm very sad about this. Not only am I sad due to what H and I have lost, but I'm also sad because I want what he wants and likely as desparately as he does, just not with him.

And I just don't want to tell him "No" again and again and again.

For my new readers, sex has been a issue with H and I for awhile now. His doesn't work and I just end up in tears and can't do it. Very sad.

One bright spot is that maybe counseling will help him move on, but it hasn't in the past. We've been here before and nothing changes. Nothing at all. Sometimes, in my more irrational moments, I fantasize that he'll want to leave so that I don't have to be the bad guy and "kick him out"...sure, I'll continue to help him, but I won't have to live with him anymore.

What I can say is that it is unreasonable for me to expect him to change in any way. He just can't. And he'll never leave under his own steam.

While H may have lost some of his mind, I am losing more and more of mine as time goes on.

Yup, sometimes I just want him to die...but mostly, I just want it to be different.