Saturday, September 26, 2009

Day 191: One foot in front of the other

Wow, day 191! In some ways I am so happy and grateful and in other ways I am still so incredibly sad. When I started this blog, I was not sure I would even see 50 days. And here we are at day 191. I have had so much more time with my mom than I anticipated and for that, I truly am grateful. But the reality is, it is day 191 of a blog about my mom dying and, in all honesty, I hate that.

Things continue to be taking us down a declining road. I can "feel" it when I talk to my parents. I'm fairly certain mom feels it too. As does dad. Hospice knows as well. They call and visit more often lately.

It's an odd place to be right now. This "anticipatory grief" is agonizing, although I still prefer it over the "real grief" that will come after mom is gone. Nonetheless, mom, dad, Michael and I are starting to live our lives as though we are planning for an event. And I guess, in some sense, we are. You know, when there is a wedding or birthday party or baby shower in the works, you make plans. You send out invitations. You order flowers. You find your venue, etc., Well, that's kind of our life right now, except we're planning a funeral. Mom and dad have been trying to put together mom's obituary which has proved harder than they thought. I told mom last weekend that as long as we had the pertinent info, we'd make sure it got done the way she wanted and she could quit worrying about it. Mom and dad visited the Catholic cemetery in Seattle where mom's final resting place will be. They had purchased everything there years ago but had never seen it. Mom said it was beautiful. And then proceeded to tell me they had to call the mortuary and talk to their priest, blah, blah, blah. I hear it all, but my brain wants to shut it out.

I know I will appreciate not having to do all of this on the fly after mom is gone. But doing it ahead of time isn't all that easy either.

I brought home all of mom's photo albums so I could start working on a video for the funeral. I know I won't be able to speak. And thankfully Michael knows that too as he is working on a eulogy. Just thinking of my brother getting up and speaking at my mom's funeral tears me to pieces inside. But it's where we are right now.

As I've said before, we continue to live our lives. I do all the things I need to do. Plus I've added in my own school now too. This week felt fairly overwhelming, but I continue to make it through. It's what human beings do.

Of course, yesterday when mom told me that dad was visiting his neurologist because she had been noticing some changes in him, I nearly crumbled again. My greatest fear is that my dad is going to die right after my mom and to hear that his Parkinson's may be acting up was just too much for me yesterday. But thankfully, his neurologist doesn't feel like it's all necessarily Parkinson's related, but stress related. He gave my dad another prescription that will hopefully give him some energy back. And I'm trying to just let those fears go for now. I know they don't do anything good for me. I have people reminding me of that as well. But it's a lot easier said than done.

And so, we keep putting one foot in front of the other. We keep traveling down this road ultimately knowing how it ends, just not when. Fall is here. The weather is changing. The holidays are coming. And I try not to think about them. I want to believe my mom will be here. And I guess right now, all I can do is believe that what will be, will be. Just like my mom always taught me.

Friday, September 18, 2009

Day 183: Reality

Today has been an incredibly long day.

This week mom's fluid has been building quickly. She took her first anti-anxiety meds this week because she was finding it harder and harder to eat because her stomach was compressed by the fluid. Then it was getting harder and harder to breathe. She's having some other physical ailments as well.

That first medication was tough for me. It signified so much more than one simple little pill. It signified the turning of events.

Now, let me say, my emotions are absolutely raw. With Olly's grandma dying last week, I think things really hit too close to home. I'm not sleeping well. I'm not eating well. The only thing I'm doing well is studying and working out. Of course, the studying is adding some major stress and I'm feeling incredibly overwhelmed by everything right now.

So, I'm raw. But the build up of this week brought me to today. And it was hard.

I have had to compose myself for the past several days every time I got off the phone with mom. I can just hear the change in her. She's trying to fake it, but I can hear it.

This morning mom said she and dad had been talking and felt like I didn't need to come over for the next draining. I told her that if she didn't want me there, I wouldn't come but that if she was just doing it because she felt bad about me driving, then she had to let me make that decision. She said she absolutely loved having me there and that wasn't it at all, but she just felt bad for the boys having to sit there and me driving, etc. I told her that I got to make that decision and if I felt like it was too much, I would let her know. She didn't even argue. She just said ok. Honestly, I don't think she meant a word of it when she said she'd be okay without me. Well, I know she would be okay. But I also know it helps for her to have me there. So, things will remain the same. I have certainly learned where I get my need to never put anyone out though! I do the exact same thing with all my friends, "No, no...I'm fine." I never want anyone to have to go out of their way for me. I apparently learned from the best when it comes to that.

After my call today I decided I needed to call her Hospice nurse to either verify or deny what I've been thinking. I suppose I wanted her to tell me it was all in my head, but I wasn't surprised when she told me she thinks I'm right.

Her nurse told me she also believes things are changing. She says mom is so small, there's so little left of her. She says she feels like mom is starting to exhibit some fear about things which tends to be a sign that someone knows things are changing inside of them. She also said that the time may come when the fluid can't continue to be drained. It can't be done very close together because it's bad on mom's kidneys and liver. So, once it gets to the point of needing to be drained closer together, we actually have to stop draining it. And then just try to make mom comfortable. This terrifies me. Absolutely terrifies me.

So, cut to the hospital today. There was a mix up and we ended up sitting in the waiting room longer than we had all anticipated. While we sat there mom and dad started talking to me about stuff I didn't want to talk about in the waiting room at the hospital. They told me they have an appointment at the cemetery next week because they've never been there yet. They're being interned at the Catholic cemetery in Seattle. They've paid for everything and everything is in place, but they have yet to go out there. They talked about it like they were going out for dinner. They talked about the cremation and the service at the church. And my head was screaming, "STOP! PLEASE STOP!"

I realized then that this is their life. These are the conversations they have together. And it ripped my heart out of my chest and tore it into little pieces. It hurt so much to imagine them sitting at home together discussing all this. Of course, I knew they probably had, but the idea that they made an appointment to go to the cemetery was just too much reality for me today.

Mom and I finally went back to the radiology room. It was almost a welcome respite from the conversation. Things went a little better than last week, although the color of the fluid was the same as last time. I now know it wasn't blood. It's simply the color the fluid. The tech today wrote down "Strawberry" for color. They only had to turn her once to keep the draining. But that's still different than it was for the several times previous to the one 3 weeks ago. Mom had taken an anti-anxiety pill beforehand which I actually think did help her state of mind. I'm thinking I could have used one too. :-O

After the draining was done, mom felt so much better. She was sitting on the side of the bed waiting for the tech to find a wheelchair when she looked at me and said, "I'm so lucky to have you." I never know how to respond to that. I just smile and say I'm glad I can be there. Then she told me she found a picture for her obituary but still needs one to blow up for the funeral. I couldn't even talk. I had to look down and try to keep the tears from flowing. I KNOW I have to have these conversations. But I wasn't prepared today. And I wasn't prepared for them being just like a conversation about anything else.

I then wheeled mom out to the main entrance and we went through our drill of waiting for dad to go get the car. Just before he left, he reached for mom's hand and gave her a quick kiss. She grabbed his hand with both her hands and for a moment they just smiled at one another. No words were exchanged but so much was said. It was the most beautiful thing and it broke my heart at the same time. It will be a moment I don't think I'll ever forget.

I had a 2 hour drive home and then had an appointment with a client tonight and had to finish up birthday shopping for Jonathan. I also have been trying to find canned pumpkin which apparently every store is out of! I had planned to make mom a pumpkin pie for her anniversary, but unless I find pumpkin, I'm out of luck. I am making a cake for both their anniversary and Jonathan's birthday and we'll be celebrating all of that on Sunday. Then Monday is Jonathan's actual birthday and the boys and I are going to the Puyallup Fair.

I plan to pick up mom's photo albums on Sunday and starting putting together a collage of pictures that I can put up for her when the time comes and she is more bed ridden. I want happy memories for her to see every time she opens her eyes.

So, I guess I'm planning ahead too. In my own way. No matter how much I hate it.

It's been a long day. And I'm going to be up for a while studying tonight. I imagine there will continue to be several moments of breaking down still tonight. I feel like I'm living in this strange world that is nothing like what I remember it being. I still cannot imagine this world without my mom. My brain can't get there. I don't know that it ever will.

This weekend is about celebrating though. So, I'm trying to get myself to that place where I can celebrate my parent's 51st anniversary and my son's 11th birthday. It's odd celebrating in the face of impending sorrow (or perhaps current sorrow), but that's what we humans do. It's how we go on. It's just not always easy.

Friday, September 11, 2009

Day 176: Emotions on high

I don't even know where to start today. I've put off blogging all week because, well, in all honesty, I've been trying to be tough. But it's now Friday night at 10pm. I'm alone in a very quiet house and my tough exterior is fading.

As I mentioned, Olly drove to California a week ago. The plans were for him to come home Tuesday. That turned into Wednesday and then his grandma took a turn for the worse and he decided to stay through the weekend.

His grandma died last night at the much too young age of 64.

I am SO glad Olly was able to be there.

But I have to say this week was really hard. And I feel selfish about it. And I have wanted to put it into words all week, but I didn't want Olly to feel like he couldn't talk to me. Because that's not what I want at all. I need him to talk to me. I just need to figure out how to let out my emotions in a healthy way too.

I hurt so badly for him. I hurt that I'm not there. I should be with him. I feel so far away from him.

And, yet, every time I heard from him, it was like a stab in the gut because I couldn't help but think that my turn is coming. This horrible rotten disease is inside my mom. It is slowly taking her from me. And every time I got off the phone or read a text from Olly, I ended up in tears.

And it's hard when it's your main support person that is hurting because you have to find support somewhere else. And I just didn't have that this week. Olly didn't need to be taking care of me. He was taking care of so many others in his family. So...I held it together and I went about my days. But I feel like I've been in a fog all week. It's almost like I'm not really here. I don't really know how to explain it.

But, as I mentioned, my resolve has weakened tremendously as the week has gone on. I'm not sleeping well and my patience is running thin. I feel lonely and lost and scared.

And the only reason I'm even posting tonight is because Olly and I talked a little today. More than we have all week. And we both said that we think this whole thing will probably help us when we are sitting in each other's roles someday down the line. Although...I really don't want to be there. But I'm hoping as he reads this he understands my feelings.

It's been hard being away from someone who I am so used to being with every day. It's been hard to be so far away from him when he's hurting. And it's been hard to hear what it's like to lose someone from cancer. Because I don't want to do it.

In the time my mom has been diagnosed, I have heard so many stories of people losing someone they loved to cancer. This disease has to be stopped. It's ugly. It takes away life, and it does it painfully. It is not easy to die from cancer and that makes me so incredibly angry. And I feel like this week has been a very close look into what is to come and I hate it. I just hate it so much.

And so I sit alone in my house sobbing out of pain and anger.

I knew my emotions were getting the best of me when I found myself sobbing over the fact that my very favorite radio show was being pulled from the air and tonight was their last night. That show brought me so much humor over the past year and 9 months. I would listen to them driving home from childbirth classes. And I was SO mad that they were going to be gone. I felt like I was losing friends. And it was as though the volcano of emotions finally erupted. I am SO tired of loss.

And tonight, I'm alone. At least all week I had my boys on which to focus my energy. When the emotions bubbled, I'd make breakfast or lunch or do some schoolwork with them or we would get out of the house and do something or whatever...there was always a distraction. There is no distraction tonight.

I really should be in bed. I have to get up early tomorrow. I can't explain how grateful I am that I am teaching all day tomorrow. And then tomorrow night I'm going to a concert that I have been waiting for all summer. Unfortunately Olly isn't going to go with me as planned and that, again, makes me really sad because I wanted to share this with him. But, for whatever reason, he isn't supposed to go and it's going to be a girls night out now with two of my girlfriends. I'm sure we will have fun and it's probably a really good thing. I should be well distracted tomorrow.

~ Sigh ~ honestly, that felt good to let go. I've been holding in a lot of emotions this week. And I suppose that isn't good either. I wanted to be a good support person this week. But I know enough to know that in order to do that I need support myself...and I didn't get that this week. I should have done a better job of that.

So now it's almost 11pm and I'm still wide awake. I'm going to be one tired girl tomorrow. I'll probably go lie down in bed and start reading one of my textbooks. That usually does a good job of putting me to sleep. ;-)

I wish everyone a peaceful weekend. And I hope my next blog post will hold a little more good news. Mom and dad's 51st anniversary is coming up next weekend and Michael and Kiersten and Olly and I are all the boys are going to spend a few hours with them to celebrate. I intend to make sure lots of pictures are taken. I also am intending to get mom's phone albums and bring them home. I have some plans for those as well.

I turned in 30 8mm tapes to Costco last weekend to get put onto a cd. That was long in coming. I'm hoping all the tapes were still good. They went back to 1964 and I want to have those memories for a long time to come.

Okay...off to bed...just me and my textbooks...and hopefully no more tears...for tonight anyway.

Saturday, September 5, 2009

Day 170: Reading

Not much has transpired this past week with mom. She has a bit of a cold which, of course, concerns me. But she seems to be okay. I couldn't get a solid answer on the color of mom's fluid that changed with her last draining. I have decided I have to let it go. Perhaps I just don't need all the answers. I'm having to come to terms with all of that.

I did talk to mom and dad on Wednesday and they informed me they were writing their obituaries. I don't know why that kind of information still shocks me. But the tears flowed uncontrollably. Nonetheless, I'm glad they are writing their own because I don't want to leave anything out one day. Yet, as unrealistic as it is, I just wish it wasn't something they, or anyone, had to spend time doing. I often wonder what my mom and dad's conversations are like these days. And then I remind myself that I just don't have to know everything. Some things are just better left unsaid or unknown.

I continue to read "Being with Dying" and am including another passage tonight because it really says so much of what I've been dealing with lately. This passage comes from a meditation called "Four Profound Reminders" This is reminder 4 (you have to pick up the book to get the first three...it's a book worth having...)

"Finally, consider the truth of suffering - birth, old age, sickness, death, getting what you do not want, not getting what you want, and losing that which you cherish. So often you have felt that this or that will make you happy, will finally bring you peace. You might have worked very hard for these things - a good relationship, a nice house, a satisfying job. Yet sooner or later you will lose all these things. They themselves can also cause you to suffer. Consider the truth of ill-being, and the great benefit of being free of suffering. Contemplate what it would be to live a life without fear. Know that deathless enlightenment is here at this very moment. Can you relax your grip on what you think is real and open your life to whatever arises? Can you see through the illusion of past, present, and future? Can you let go of the reference points of solidity, identity and separateness? Can you relax and open to things as they are? Can you plunge into life at this very moment and accept and learn from all of it? Let confidence arise in the trust of the present moment. Be there for it.

Relax as you experience this focused awareness, sense of inquiry, and presence, and remember who you really are, and why you are here."

It's hard work, but no one said life is easy.

I am learning a lot of lessons. Some complex, like the one above. And some simple...like the fact that I need to allow myself to be photographed more. I was going through my parents' old photo albums and realized that in most of our family photos, my mom was behind the camera. I wish there had been more photos of her. I, too, prefer to be behind the camera. But someday I want my kids to have printed memories of me. I will work harder on that one, just as I work on the big lessons.

And I continue on taking things one day a time. Learning and growing along the way.

Olly is in California right now. He drove 15 hours to say good-bye to his grandma before she dies of lung cancer. He is seeing family he hasn't seen in a very long time. As is life in many families, the only time we see each other is during a wedding or funeral or maybe a random family reunion. It's unfortunate that lives are so busy these days. But Olly's grandmothers illness is bringing together his family as well and that is a blessing and a good thing in the face of great sorrow. I know I have been so grateful for my extended family through my mom's illness and am happy that we are in contact more than we used to be. I just wish it hadn't taken mom getting sick to put us back in touch. And I plan to work harder to keep in touch with people now and in the future. Family and close friends are SO very important. We can't allow ourselves to get wrapped up in our daily lives so much that we don't make time for the most important connections in our lives.

And now I'm off to rest. I had another 24 hour birth this week and am still trying to catch up. The older I get, the harder those all night births are on my body! :-O I also started school again this week and am officially a full-time college student again. 2 years from now I hope to have my Bachelor's Degree! The first week wasn't as stressful as I had anticipated it would be last Sunday when I signed on to my classes for the first time. It's a lot of extra work, but it's work I'm proud of and work that will have a great reward at the end!

I hope you all had a wonderful summer. It seems that fall is here. The leaves are changing and falling. The weather has cooled. It's September. As Spring was coming in, I found out that mom had cancer. At the time, I didn't expect that she would still be here to see this fall. I'm so very grateful for all the time we have been given. And I want to believe she will be here for all the holidays coming up, but I am trying to just be very grateful for every day that we have together. It's day 170. That's miraculous. And I am grateful for every single one of those 170 days.