He's gone....

My husband's father passed away about four hours ago. You may be wondering why I'm blogging about it and not sitting by my husband's side.

....I wish I could be by his side right now.

My husband left on a business trip this morning. He's in another state and can't get home until tomorrow morning. It's a small state and the airport is closed for the night. He missed the last flight out by 15 minutes. So, my sweet husband is in a strange city, left to deal with the passing of his dad all by himself.

I'm heartbroken for him. I want to hold him and comfort him but I can't. I literally ache for him right now. His dad was so special to him.

His dad was a special man to everyone that knew him. I can't begin to count the number of times I've heard people say "he's my hero" about this man. But his biggest fan was his son; my husband.

This has been a strange journey for me, a Hospice volunteer. I've never experienced death up close and personal, except through my Hospice volunteer experiences. My very special Aunt died suddenly in her sleep which is a whole different experience. And it was also an experience that I deal with a lot better. It's more difficult for me to see people I love in pain than to experience it myself.

My husband's dad didn't die suddenly; at least not until the end. In respect for my husband's privacy I won't go into detail, but being a Hospice volunteer did not give me any advantages. It was almost a disadvantage for me because I saw things I didn't want to see. I knew things I didn't want to know. I knew things my husband's family didn't want to know. On one hand I wanted to tell my husband what I felt was happening because I didn't want him to be sideswiped. On the other hand, I'm not a doctor and I am not an expert on dying. After all, I could have been wrong about what I saw. So I kept quiet and had to watch it all play out.

I am not sure that it was a blessing in disguise, but my father-in-law didn't realize how sick he was until he received a questionnaire in the mail from his medical center asking if he felt his doctor was dealing with his fatal illness properly (I'm paraphrasing.) My father-in-law was surprised to hear his illness described in this manner. He never really thought of fact that he had a fatal illness. This happened in December. I was appalled that he had to find out in this way.

The next time he went to the doctor, he was told, "Well, I assumed you knew". Then gave him a prognosis of 2-3 years. My father-in-law told us all that he 'knew' the doctor was just being cautious and told us all that he felt he had another 10 years left.

I knew better, but I gave him the respect and dignity of having his own reality.

Ironically, this day was the same day I finished my grief and bereavement training with Hospice. I have to wonder about the timing in all of this. This journey I chose for myself would start right here in my own home.

We visited two weekends ago and I knew that he'd not see the end of February. This is really hard information to keep to oneself. Yet again, my suspicions were confirmed the following Monday when they went back to the doctor. His prognosis was moved up to "days, maybe weeks". The doctor insisted on Hospice, and they finally agreed.

It's almost as if once he found out that he was dying, he let go. He lost his will.

We saw him again on Saturday and I knew he'd be gone within days.

Again, I was right. Today was the day.

So, all this time, unless asked, I never shared what I knew with my husband or his father (or step-mother), but I did share with my husband's mother. I shared all of it with her. There were days that we wrote email to each other at least twice a day. It's been so wonderful to have her there to listen to me and assure me that I was doing the right things for my husband. I needed to hear that from someone who knows and loves my husband and who also still loves his father that I was taking care of my husband in the best way possible.

For my own support, I had my sister to lean on. I know she's always there to support me. She's my best friend. I've had some stressful things going on at work on top of this and felt like I was drowning at times. I didn't want to burden my husband with any of it because he didn't need to carry any more of a load than he already had. I'm so glad that I have my sister at times like this.

I also had *my* Hospice services (the organization I volunteer for) to help me with advice during a few sticky situations. I felt as if I was way over my head at times because I had to witness all of this going on around me and not say anything. They helped me by practicing conversations with me, they gave me ways that I could say things and not offend or change people's realities.

So, now that I've cleaned the house from top to bottom and I've thrown all of this out onto my blog, I feel helpless. I'm not *doing*.

And my husband is alone.

Frustration

Hubby left for a business trip this morning, coming back Wed night. We visited FIL on Saturday and he was on day two of morphine. The morphine isn't for pain, it's to relax him so he can breathe easier. So, it wasn't a surprise that he was sleeping a lot while we were there and didn't want to eat. That's my experience the first day of taking narcotics every time I have to go on another round. Then my body gets used to it and I can function fairly normally (or so I'd like to think!) I wasn't sure if FIL's sleeping and lack of appetite was due to this or the fact that he's just really close to the end. Yesterday’s morning when we were there, there wasn't any improvement, really. So, I kind of knew what was going on. Hubby called from the airport before his flight took off. He had just talked to Step-MIL who said that Hubby’s dad is pretty much sleeping around the clock and not eating anything. Hubby wasn't sure if he should go continue with his business trip, not knowing what, if anything, this meant. I suspect it's just a matter of days. I'm not sure what the conversation was between he and Step-MIL about whether she told him to go or asked him to stay. If she'd of asked him to stay, I'm sure he would have so I'm sure that she told him that he was fine to go. I told Hubby that if he was worried about his dad dying while he was gone, that this probably wouldn't happen. But I couldn't guarantee it. He's going to try to fly home tomorrow night. I hope he can do that. Step-MIL called me about an hour ago and said that she might need me to come help take care of Hubby’s dad because she isn't strong enough to get him in and out of the bed, also so she can run errands if she needs to. I told her that I'll be there if she needs me, but I have this precarious situation going on at work, so I wanted to be honest with her that if at all possible I'd appreciate it if she could call Hospice to help out during the day, and I could definitely come in the late afternoon and evening. I shouldn't have done that. I shouldn't have mentioned my job. Because even though I told her that I would drop everything, I have a feeling that all she heard was "I'm not going to risk my job". She made some disparaging comments about how Hospice isn't willing to come every day and they haven't even heard from a "fucking" volunteer yet and how Hospice expects her to pay for help if she needs it on the days they can't come out. What "fucking good are they". I tried explaining how the volunteer is set up, and it takes a while. It's the last thing to be set up. What's important is the nurse. She said that the social worker was coming out today and she was going to "make her keep her ass there all day so she could see how much work this is". I don't think anyone is denying that this has to be a lot of work for Step-MIL, but saying things like that is really making me feel very defensive. Especially when Step-MIL doesn't want to accept help unless it's her way. I tried to tell her that once Hubby’s dad gets set up in the bed, then they'll probably take care of things so he doesn't have to get in or out of bed anymore (catheter, that sort of thing). She really wouldn't need any 24 hour help to move him around. They have great bathing stuff for bedridden patients (a towelette you can heat up in the microwave that has a soap less type of cleanser in it). She then made a comment how she's already "wiped his ass twice today". GOD! Stop it!, I want to tell her. I knew Hubby's dad was right there hearing all of this. It's so degrading. She ended the call on that negative note. I knew this would happen. I knew that Hospice wouldn't be good enough and I'd have to hear about it. I have a feeling that's the only reason that I got the call. So she could basically say, "see? I told you so." I don't know. Maybe I'm just feeling overly defensive. I felt bad that I'd even mentioned my job in our conversations earlier. Really, I'd drop everything to go help; but when we were there Saturday Step-MIL made it clear that she didn't "need any help". I have a feeling that she'd only have me come over so I could hear her rant and rave. I can't risk my job for that. The timing of all of this is really off, but I am sincere that family comes first. Step-MIL also has to be reasonable. I feel like such a heel for even making limitations like that. If Step-MIL was different, this would be a whole different situation and I wouldn't have had to even mention that. So, after about 15 minutes of beating myself up for mentioning my job, I called her back to make it very clear that I'd drop everything to be there. Then I suggested that I actually come now, and then tomorrow in the morning and just work from there and leave at night. That way, I could work AND help her with Step-FIL. My manager wouldn't even have to know that I wasn't "home" since I'd just bring my laptop and cellphone. They have no idea where I'm working from. When I heard her stammer a bit, I told her that I'd work in the back room so I wasn't in her road. She wouldn't even know I was there, except if she needed something. She didn't want that. She said she just wants me to be available for when she needs me. My Hospice director was right. This is good experience for me, to see what families go through. I just want to cry all the time. I want to cry for Hubby because I know I can't protect him from feeling this pain. I want to cry because I feel so helpless. I feel that I'm not doing the right things. I know I'm doing the right things for Hubby, and I guess that's all that I need to worry about. I'm just a "fixer" and want to make sure everyone around me is taken care of. I'm not able to do that. I just want to pull the blankets over my head right now. I can't begin to imagine how Hubby feels.....

Ask, and ye shall receive

I am not someone who believes in coincidence; I believe that many things happen because that's the way they're supposed to happen. Last night was a perfect example.

On the way to dinner I shared with Hubby the fact that “Bob” lost his dad to emphysema on 12/26, just three weeks ago. I assured him that they knew nothing about FIL, so this is not a topic that he needed to worry about talking about if he didn't want to. We all got caught up and I asked “Bob” how he was doing. He shared the up's and down's that he's had with the loss of his dad. He then brought up Hospice and said how important it was that they were there. He shared how it went at the end, and it was almost identical to FIL. The family had NO idea how sick “Bob”'s dad was until the very very end. “Bob” shared that he and his brother were holding their dad's hand when he passed on, and it was a really beautiful thing for them.

“Betty”, my other friend, then shared that her dad was just put into Hospice and shared the circumstances behind that. Hubby put his hand on my knee and I knew right then, that this was going to be good for him.

To my surprise (because he's such a private person), Hubby brought up FIL. He shared what has been happening, and my friends just listened. Hubby asked questions of “Bob” because his story was so similar to what Hubby is going through right now.

There were a few tears at the table last night, but surprisingly, the tears were tears of empathy from those listening to the stories of others. Not from the person telling their stories. “Bob” did get emotional a few times talking about the times he'd be overwhelmed with emotion and didn't like the fact that he never knew what would set him off. He gave an example of being in the store and see his dad's favorite candy and crying.

I think it was good for Hubby to hear this, yet see that “Bob” could go out do dinner with friends and still laugh and talk about "normal" things only three weeks after the death of his dad. “Bob” was just as close to his dad as Hubby is to FIL.

My friends really supported Hubby last night (which I knew they would if he decided to talk about it, because they are wonderful friends.) In addition to the sharing such personal emotional things, we laughed. We sometimes laughed so loud that people looked at us but we didn't care!

They all shared with him how important it is for FIL to be able to see anyone who wants to come see them and how that point is going to have to get across to MIL, and how it is important to get Hospice in there. They helped him with ways that he could bring that up with his dad. Apparently, “Bob” had a bit of this problem with his mother too. This was great for THEM to tell him this because they were receivers of Hospice. Unlike me, who he might think is just prejudiced to Hospice.

Not sure how well the Hospice thing will go over, because MIL made a flippant comment when we went to visit yesterday about how her maid told her that Hospice people steal drugs. I told her that it's possible that this has happened, but it has to be extremely rare. I explained that we're all screened heavily (even FBI records) before we can volunteer.

Hubby is going to the doctor with FIL and MIL on Tuesday so he's going to bring it up with the doctor in front of FIL and MIL while there. In the end, Hubby told my friends that he felt that he'd just made some really good friends, and they all said that he now had a built in support system. They decided to call themselves the "Hospice club". Too sweet, huh?

We're planning our next get together for April, and will be getting together bi-monthly from now on. Hubby is really looking forward to it. On the way home, Hubby kept saying how he couldn't get over the timing of all of this and how important it was to hear all of this. We'd planned this dinner before “Bob”'s dad died, and certainly before FIL got the recent news. We didn't know anything about “Betty” and her dad. Yet, it was just the exact right time. If we'd of been able to make our dinner three months earlier when we first started planning, Hubby wouldn't have had this wonderful support around him.

I am constantly amazed at how blessed I am when I put it out *there* that I need help. Last night I felt relaxed for the first time in a couple of weeks. I knew that this was the exact thing that was meant to happen. We ended the evening watching one of our music DVD's (Don Henley) and having a glass of wine. I just couldn't have been more perfect.

A week of realizations

Hubby called FIL just a little while ago and said that FIL said he had a realization last night. He's come to terms with everything. Seems that he wants Hubby to come over every day now, and that's what Hubby is going to do. MIL told Hubby that she felt he knows exactly how long to stay, so he's welcome to come any time he wants. That is so wonderful to hear. FIL also told Hubby that he feels it's time to start talking about things and making arrangements. Hubby shared with me that he's come to terms that it's probably not going to be much longer and that FIL could just not wake up one morning. When Hubby was sharing all this information with me, I was processing it all and thinking about what it would all mean emotionally for everyone. I was going through my memory banks of families I've worked with. I only nodded my head while he talked to me. He asked me what I was thinking because I had a "pondering" look on my face. Rather than tell him what I really was thinking about (because honestly I didn't think it's my place to tell him that I think FIL's realization is a sign that he's really close), I just I made a comment that I was glad that everyone has come to these realizations because now everyone can start progressing, and Hubby got a little annoyed with me. He told me that nobody was ever in denial, so I had to back-peddle a bit. I told a white-lie and said that I didn't think anyone was ever in denial. I explained that I was ahead of the curve only because of my Hospice experience. I think I'd better quit tossing that out there. I don't want to sound like some weird Hospice evangelist or something. Honestly, I don't mention it that often but I can't help but draw from my experiences. I kind of wish right now that I didn't have those experiences because I feel too "in the know". I don't like being in the know. Not when it comes to people that I love.

I feel so unequipped

I am a Hospice volunteer, recently changed directions from patient care to grief and bereavement. The day after I finished my grief and bereavement training was the day we found out that my father in law (FIL) was close to death. We knew he was terminal. He has emphysema. Two months ago, his doctor told him that he had 2-3 years left. FIL didn't believe the doctor and told everyone that he has at least 10 years left. We got an email from him a couple of weeks ago that he was very weak and was having a hard time catching his breath. He said that for the first time, he was scared. I wrote back telling him that I was sorry he was feeling these things and asked what I could do to support him. He immediately retracted his statement and said that he really wasn't ss that scared or that sick. It was obvious that he didn't want to look in the mirror that was reflecting back with the acknowledgement I mmhad made. We visited him two weekends ago and I saw definate signs of end stage. Sometimes it's disturbing that I know so much, especially when I can pick up on things like that. I wrote him a letter a few days later suggesting that he ask his doctor about Hospice. I worded it in a way that didn't say that I felt he was dying 'tomorrow', but told him about a particular piece of Hospice that just provides support for those people that have received a diagnosis "such as his" but have lot's of time left. I poured over this email for about two hours so it was very innocuous and not pushy. I received an email back with two words, "not now". Nothing more. I cried all day, and beat myself up thinking I'd done the wrong thing. But I still justified it in my head because I knew that he was dying soon and had no idea. Unless there is someone visiting him with medical knowledge he will never be made aware of the stages he's in. And, of course that would mean that we'd never be aware. The next day he went to see the doctor. The doctor told him that he had "days, maybe weeks" left and that they weren't going to give him any more preventative medications (antibiotics, etc.) The doctor then told him that it was time for Hospice. FIL said he didn't want Hospice. I'll admit it, I'm frustrated with this and don't understand. I don't understand why someone would refuse such a wonderful program. I'm also frustrated because I know that this will place more demands on my husband. They want him to take time off of work to help drive FIL to the doctor. FIL wouldn't even need to go to the doctor if Hospice was involved. FIL and step-MIL have quit contacting me. They used to email hubby and me at the same time. Now they just email hubby. It's hard to not be hurt by this. I know it's because they know that I know "too much" about this sort of thing. By not including me in what's going on, it allows them to remain in denial. The step-MIL wants to do everything herself, but she also wants to make sure we all know that she's hanging herself on a cross 24/7. The dynamics there make the hair stand up on the back of my neck. I really dislike even going over there. But my husband will never know that. Nobody will. Ultimately, this is not my decision to make. FIL has a right to die in the way he wishes. Step-MIL also has the right to decide that she wants to physically exhaust herself. At this point, my job is to support my husband. That's what I'm going to do. I feel overwhelmed and drowning right now. In addition to this, I have scary things happening at work. It's all too much.