Another Holding Pattern

Now that Dad has picked up another bacterial infection, he's stuck in the hospital. The good news is that the Hickman cath seems fine. And his kidneys are stable. But he isn't getting better. My cousins who came today were floored. My Mom said they had to leave Dad's room sobbing. They all looked a little pole-axed when they came back by the house. I don't know that any of them really understood just how sick he is. You always think you are prepared, but you can't be. And as Mom pointed out, none of them had ever really seen him sick before. I think tomorrow is going to be tough as well. My favorite cousin is in denial, I think. He's been to visit, and I've been keeping him posted, but it is different to see Dad in person.



This week has been a tough one for me. I find myself crying more often, mostly in the car and at night. It's this great, sucking, black hole. Sometimes my boy unwittingly triggers it with a statement or question, "When Papa comes home, we'll have to be quiet so he can rest.", "When Pap gets better, we can go see the fire trucks." I don't know how I'm going to explain this to him. I know he's going to keep asking questions that break my heart. He still asks where the dog is. The dog died in October. I'm starting to think Papa isn't ever going to get home from the hospital. How can it be that he and my baby will never see each other again?

Vermont is out of the question now. Dad is just too sick. If he's home, I won't be going either. I'll have someone else use my cabin. I don't know if Dad is even thinking about Vermont, but somewhere in there, I know he knows that he's not going to get there. I keep getting stuck on the "never agains." I know Dad wants the family to still go, even if he cannot. But part of me is wondering if even that will happen.

I am also missing my husband this week. He called his Dad to congratulate him on his retirement the other day. He'd been up almost 24 hours trying to troubleshoot a problem. Now, I did remind him in an email of the date, but he went to the trouble to call his father, despite all that was going on by him. And it reminded me again why I love him and what a good man he is. And it made me miss him.

I also relearned an important lesson about making assumptions. I was a bit put out that I had not heard anything from our XO's wife. She didn't even reply to an email I'd sent about her son being hospitalized with pnemonia. I thought I'd at least get a reply. So, this week I rsvp-ed to an invitation and told her I'd obviously not be making the event but hoped they'd all have a lovely time. She sent me back a lovely email saying she knew I couldn't come but wanted to include me. She also said she wanted to thank me for emailing about her son weeks ago, that since then he'd been diagnosed with Reactive Airway Disorder and has had a collapsed lung. So now I feel terrible that I thought she was just blowing me off. I'm also wondering why no one else mentioned it to me before now. Seems like news that would bear repeating. Moral of the story-never assume.

And this entry from Mimi Smartypants actually made me laugh out loud. I wish the Trader Joe's guy had a blog so we could see his take.

Looking Ahead

Mom started to gather information on hospice today. Apparently, they like to keep people home now with caretakers coming in as needed. Mom wanted to know if I was comfortable with this and I told her I am. I just want to make sure we have the people or the skills for all that needs to be done. I don't want a situation to go bad because I'm untrained.

They are going to install a new PICC line tomorrow for Dad. We'll continue with the IV nutrition as we have been doing. They discussed a port in his chest but his doctor feels like that is way too invasive and that he isn't really strong enough. Dad's kidneys are starting to struggle. They did a sonogram today and we're waiting for results. His legs are all swollen and the drugs have been building up in his system. We we went on Father's Day, he was really disoriented. We found him at the desk asking about his credit card, which he believed he had given to the nurse to pay for something. He wasn't all that able to focus on our gifts or what we were telling him. He be good for a few sentences and then fade out. Plus he was exhausted. I guess the pain meds clear through his kidneys and now nothing is really flushing. So he was very foggy and confused. Mom and I both said he hadn't somehow counted on his loosing his place like that. We expected pain and sickness, but we assumed he'd know what was going on. Mom said he was near comatose today when she got there and so they held off the next few rounds of meds. The nurse was concerned and keeping a close eye on him. Mom said later, when he woke up, he was much more like himself. They had the news on and he wanted to be sure I got everything here squared away before the big storm hit. I'm hoping they'll be able to make a decision about his kidneys tomorrow and move on it.

When Dad got his diagnosis, he said the only thing he really wanted to do was to get to Vermont one more time. We have the big family vacation/reunion planned again this summer at the end of July. The woman who owns the cabin they've been renting for years is heartbroken that Dad is sick. She lost her husband last year. She told us that the cabin was open and unrented all of June so if he could make it up then, we should just go. We've been talking it out the last week or so. We talked about maybe renting or borrowing an RV so he could lay down for the trip and be comfortable. Once of the nurses that Mom knows personally offered to come along and help. We know we could ask any fireman, friend, or family member for help or to come along. But as the days pass, it looks less likely. Dad's doctor has been his doctor for years- he was my Dad's mother's doctor. He is really upset about Dad. Throughout this ordeal, he's come to visit Dad in the hospital almost every day, even when he wasn't directly involved in any of his care, just to see him. He told my Mom he wants to stay positive but he wants to be honest too. He hates the thought of Dad not getting to Vermont again, but he really doesn't think it is going to be possible. There are just too many problems. And we don't want to pile into an RV and embark on an hours long trip and then have an emergency.

I've been thinking about the trip for weeks. Especially if we'd gone in June, because it would only have been my folks and I (and maybe the nurse). The thought of being there for Dad to say goodbye to the lake, knowing he was saying goodbye, absolutely breaks my heart. But the thought of him not getting that chance is even worse. It's so unfair. I wish he could be well enough to go with all of us. Then it might feel like one last party rather than a final farewell. But I really don't think he's going to get to go at all. And I think he probably knows it.

Father's Day was awful for so many reasons. I don't know if it was worse that he didn't seem to grasp what was going on. I don't supposed it would have been any easier sharing a last Father's Day if he was crystal clear. It's the first Father's Day I've spent with him in years. I wish it could have been better.

Last year, when I got the five-day migraine on my birthday I thought, "Next year's birthday has got to be better." I had no idea how wrong I was. When I was a high school senior, my boyfriend's brother committed suicide at college in February. His mother, who had been battling cancer for 9 years, gave up. By spring she was in hospice, by summer she was gone. She was buried on my birthday. I think I may be replaying that summer. In all the exact same locations. I know that someday I'll have a happy birthday again, but I don't think they'll ever be the same.

Like Ships in the Night

There is a very nice woman at the gym who met me shortly after I joined. She got the basic rundown of my life: deployed husband, sick Dad, temporary lodging, three year old. I see her periodically, either in the workout room or in the childcare room while we're picking up our kids. She usually asks how my husband is and if I've been able to talk with him. A week or so ago, she asked if he was home. I told her he was gone until October. She nearly fell off her chair- "Seven months! How do you do that?" And, as any military spouse knows, there is no good answer to that question. It helps to be independent. It helps to keep busy. You just do it.

So I saw her today and she asked how my husband was. Then she asked me, "Don't you miss him, gone so long?" And I told her yes, but that isn't the whole truth. I miss him and I don't. There is so much for me to deal with here right now. It distracts me. Sometimes I really wish he were here. Sometimes I'm a little annoyed I don't hear from him more often, considering. But then I remind myself (a) he hates that he's not here, (b) he's not good in a situation like this and, quite likely, wouldn't be all that comforting. I mean that in the best possible way. We've been together a long time. He just doesn't know what to say or do in this kind of situation- most people don't. He has learned just to hug me, so that's an improvement. Then there is (c)whatever I've got going on here, he's still stuck on a deployment with a small group of people who don't always play well together in 125 degree heat. His life is also continuing.

I just worry about how things will be when he gets home. I'm going to be glad to see him, but I'm also going to be unbearably sad, one way or the other, about my Dad. It's not going to be the happy reunions on the past. Plus we're now adding the child to the mix. Anyone who has gone through this realizes that the first hour of the reunion is great, but it doesn't last. Real life crashes back in. I'm afraid we may be in for a tsunami.

Rearranging Deck Chairs

Being the cruise director on the Titanic here is no picnic. Some days I just shut my brain down. Some days, like today, I can't make it shut up.

I don't think Dad is going to make it through the summer. It is a distinct possibility that I am beginning to face. There is a chance he won't make it until my husband returns from deployment. Which opens up an additional can of worms- will they let my husband come home for a funeral. The death of my father would qualify him for consideration, but there is no guarantee. Now, while I completely understand that this is outside of his control, not everyone else in my family will be willing to see that. I emailed him today to tell him that I understand and know he will be here if they let him. But it has already got possible screaming fights running through my head.

To say that my relationship with my younger sister and her wife has been "difficult" for the last ten years would be an understatement. Early on, I was always one of their biggest supporters. I was one of the first people my sister came out to in the family. I have known her wife longer than she has-over 20 years. But there have been incidents where I have felt judged, disrespected, and taken advantage of by them. The most recent, and most relevant, was when our maternal Grandma died a few years ago while I was pregnant. I had seen Grandma while home for the holidays and knew that my good-bye was my final goodbye. It was awful, but I got through it. I went back home and kept in close touch with Mom. As Grandma got sicker, Mom told me she didn't want me flying home for the funeral if I was only doing it to support her. She told me, "If you feel like you need to come to say good-bye, then come. But I would rather you didn't fly any more than you have to. I'll just worry." So I felt like I'd stay put. I emailed my sister and began laying the groundwork for my non-appearance early. Because I knew if I wasn't there, there would be comments. I told her Mom didn't want me flying and that I'd really said my good-bye. I feel, personally, that funerals are for the living and I'd be coming to support Mom, but she would rather I stayed home. I got an email back telling me: "Don't kid yourself. If you don't come it's because you don't want to." (Did I mention that she's a therapist?) I let it go. I didn't send back a nasty-gram. I didn't tell anyone in the family and cause WWIII. I moved on. We didn't talk much for a while, but I've always tried to maintain a relationship because I would hate to not be speaking to my sister.

But now, with Dad sick, they are in full force judgement mode. They think it is wrong that my sister's husband didn't come in to see Dad for a few weeks. And my sister in law felt free to tell his Mother what they thought at his daughter's Communion. My Aunt called my older sister today and said my younger sister told my Aunt's daughter that she is annoyed that my Dad's sisters don't come to visit more often. My cousin, to her credit, told my younger sister that they were just respecting Dad's wishes not to have too many visitors. ( Did I mention that they all still work, one just had a knee replaced and they all live at least 1.5 to 2 hours away?) I am trying not to get drawn into all of this. I am a big believer in not sticking your nose into other peoples' business or arguments. Especially in times of stress. But I can hear this one knocking on my door. And it is making me sick. I don't want to get into a screaming fight in my Dad's last days. I don't want to get into a screaming fight during that most stressful time of wakes and funerals. But if I'm pushed on this one, I don't think I can help but push back.

Tip of the Iceberg

I knew this year wasn't going to be easy. My military husband was scheduled to deploy and I'd be doing my first round of long-term, single parenting of our growing toddler. We've been at this for a long time and have done lots of deployments before. I was undaunted. I felt prepared. And, so, arrived the week of deployment.

On Monday, the doctors found a mass on my Dad's pancreas. On Tuesday, my husband left for seven months. On Friday, I was on a plane home to learn my Dad has stage four pancreatic cancer. So I have moved home for the duration of the deployment. I need to be here and my son needs to be here. I worry he won't remember his Papa who loves him so much, who is his buddy. I think that breaks my heart more than anything. We've been here about two months now. It's hard to sort out my feelings most days. I'm hoping that writing here will help me get them organized, or at least recognized.

There is the grief, which hit my with unimaginable force . Since I've been home, I'm more caught up in the day to day managing, and it seems more like background noise. Until the rare moment when I'm alone, like in the grocery store. Or late at night, which explains why I can't sleep. I don't know if keeping it at bay is good or bad. I suppose I'll find out.

There is the anger/frustration/off the chart stress level. My three year old and I are sharing my childhood bedroom. There is only one bathroom in this house. I have left behind my whole life for seven months. I basically don't know anyone in town anymore. I've been out twice since I arrived. Did I mention my son is three? Have you ever lived with a three year old? Frustrating. I'm out of my routine. I'm not getting the exercise I need. My husband is in touch when he is able, but it isn't anything like daily. We've spoken on the phone five times. We mostly email.

There is the medical care. I'm very involved with Dad's care. He's in and out of the hospital. While this is to be expected, it doesn't make it any easier. I've called three ambulances. Dad's been unable to eat and I'm handling his IV feeding and helping to manage his meds. I honestly don't know how anyone does this alone. It is overwhelming. I'm also really trying to help my Mom through all of this. She is nervous by nature and this is terrifying and overwhelming for her. She's been doing so well, but I know she's only just hanging on. I'm trying to find the balance, with both of them, between helping and pushing past my place. Additionally, as much as they are happy to have us here, Dad's exhausted most of the time and my son is very active. He has two speeds: full-bore and asleep. I try to keep him from disturbing them and try not to squash his natural exuberance.

It's all just exhausting. But I wouldn't be anywhere else right now. I'm so lucky that this happened at a time when I could literally pack up and leave home for seven months. If my husband were home, I'd feel guilty having my son away from him. If my son were older, he'd be in school. If I didn't have my son, I'd have a job.

Of course, when my husband comes home we'll go home too. And I have no idea what will happen then. Actually, just thinking about it makes my throat close up. Right now, I can't plan more than about 48 hours in advance. And those plans are never set in stone. For a control freak, this is torture. Part of me feels like I'm doing everything I can and part of me feels like what I'm doing is woefully inadequate. I imagine this will only get worse.