Sunday, February 27, 2011

This might not look like grief. It is.

There are certain truths that are becoming self evident to me. We know things theoretically, but we don't really know them until they happen to us. So, there is knowing and there is knowing. For instance, we all know that everyone dies eventually. All of my grandparents have passed. They all lived lived into their 80s. I wish that I could say that they all lived with their minds and bodies intact, but that would not be true. Funny how you often get one or the other, but not both. That was not a ha ha funny, btw. I even had a great grandparent live until I was in my 20s. By the time that each of them went, it was a blessing. They all had senile dementia and didn't know what was what. That is no way to live and I could tell it was frightening not knowing who anyone in their world was. They felt alone and frightened. Every now and then they got a good day and recognized family when they saw you. They might not be able to place exactly who you were in the scheme of things, but they knew you on some level. Those days were rare. When someone passes after years of that, we call it a blessing because it is a blessing for everyone. It has been painful all the way around.

On my dad's side, my aunt died of colon cancer that spread through her body and she was in a lot of pain. Her passing was a blessing simply because it was such a painful way to go. My father's mother had some senile dementia going on and her cancer, by the time they caught it was all through her body. However, they think it started in her colon. Yeah, I think I probably said this before.

For those of you who have been reading this here blog for a while might remember how shocked I was that my dad's memory has shorted out on him so much. This was a discovery that was made in April or so of last year when we went on a family vacation. We were telling stories and such, and my dad just didn't remember stuff. Huge chunks of his memory were just gone. It seemed to be completely random. Other stuff totally intact. If you want to picture his brain like a computer, just imagine a whole bunch of wires pulled out. Those wires represent memories. And they seemed to be pulled out at random. No rhyme. No reason. And no real way for anyone to know what he remembered and what he didn't. For instance, it never occurred to me that he forgot that his sister and mother died of colon cancer, and that he needed to be on top of that. Or that my brother wasn't aware of it and not paying better attention as the person who lives closest to my dad.

Anyway, let's get on with what is. The biopsy came back Stage 4. I think they cat scanned him to determine how far the cancer had spread. Though it could have been an MRI or PET scan. I am really not sure what scanning system they used. His gastric area is laden with cancer. It is all through his colon, into his intestines, and liver. There was a spot on his lung that might or might not be cancer. In any event, with Stage 4 cancer that has spread as much as his spread, they are giving him 4-9 months. It is amazing how great Medicare is when they know that they only have to take care of you for a limited time. They really monkey up everything and are happy to do so. Care with a smile.

Fortunately my brother and sister-in-law just redid their downstairs in anticipation of taking care of her parents. My brother went out Tuesday night to get my dad his hospital bed and table. Thank you Medicare. Hospice has a nurse who will come out twice a week to check on him and make sure he doing well. Help him with anything he needs and make sure he is getting the right amount of pain meds. In a terminal patient they do not worry about addiction. It all about making sure that the patient does not suffer. Hospice also will have an aide come out two days a week. I think that person is there primarily to help him with his hygienic needs. Showering. Shaving. Changing the sheets on his bed. That sort of thing. I will know more once it all gets into a groove. The doctor may come out periodically to check on him, too. The team meets once a month to discuss all of their patients in hospice care, so I imagine everyone tries to be "in the loop."

In about a week, my father will have the better, "permanent," colostomy bag that is easy to replace the bag and has snaps. Right now, it is the biggest thorn in his side. They have to use adhesive tape to keep it in place and it doesn't always hold real well. Blah blah blah. The other problem is that my dad feels gassy whenever he stands up. I think it might be because he has a tumor pressing on a nerve in his colon. They didn't remove any of the tumors and some were fairly sizable. So, every time he stands he feels the need to go to the bathroom, but he can't. It is an uncomfortable pressure. However, in terms of his pain, my brother says he is doing really well. Surprisingly well.

The other thing is that apparently this has been a problem for a long time. Every time he stood up, he felt this pressure, so he walked hunched over, etc. Anyway, he has pretty well lost all of his muscle tone and is down to 135 pounds. He is 6 feet tall. Yeah, everyone in our family is freaking wasting away! My brother is down to 150 and is just as tall as my dad. Of course, the difference is that he is working a manual labor job right now and he is solid muscle. I swear that he has the fastest metabolism in the world! *sigh*

Anyway, I talked to my brother about the best way to manage a visit and suggested that we stay in dad's apartment since he had a full house. He was going to let the apartment go at the end of this month, but was more than willing to pay one more month rent if we came up in March. His house is full to the brim! So, that is what we are doing. I moved all of my doctor's appts to this week. He went over and cleaned up over there this weekend. He is going to get a friend to help him move the "stinky" stuff out before we get there. And mom and I bringing up one inflatable bed to sleep on. She left another inflatable bed at my brother's for when she visits and he will bring that over. So we will each have our own bed and room. We will probably stay for two week or so.

And I am hoping that my brother and my dad talk again about the C-Staten vitamin therapy. One of the things that I hate the most about this whole thing is being so FAR from the situation. I feel like I have to input on anything. No control over anything. It is very frustrating. Perhaps most frustrating of all is that I would like to stay longer than two weeks, and I think that my brother and sister-in-law would be happier if I stayed a week. I could be wrong about that. However, it isn't up to them. Chances are reasonable that this is the last time I will see my dad alive, and I think that if I want to stay right up until March 31, they should encourage me to do so. If the roles were reversed, I would do that for them. But, hey, that's just me.


  1. Hi, Robin... I've been out of town visiting my daughter. I've faced the situation that you are finding yourself in, and I have no words of wisdom for you... *huggles* I think no matter when these events happen in our life times, we are always unprepared... even when we think we are ready.

    You will be in my thoughts and prayers in the days, weeks, and months to come...


  2. Stay strong dear one! I know it's difficult. I'm sorry, I wish I could say something that would make it better. But unfortunately, I don't. Sending you virtual hugs!

  3. I am so sorry that your reality right now or at all. I know it is painful for you. I'm glad you are writing about it...hopefully we can all help each other.


  4. Stay as long as you can. Robin I am so sorry. This is beyond stunning..I don't even know what to say. There is a lot for you to sort right now.
    I will pray for you and your family. I don't even know what else to say. I am glad you can talk through your blog.
    Big hugs to you.

  5. Hugs, hugs, hugs, Robin. And a million hugs more.

    I read a report not too long ago that music is the last thing to go in a memory; that long suffering Alzheimer patients will forget the words to many things but, when a song is played from their childhood, from their younger days, they hum along or sometimes even sing the words.

    Go through your music, the stuff that reminds you of growing up with your dad, go find the stuff he used to sing along to on the oldies station, and play them when you visit. It might help take the edge off.

    I'm so sorry.

    Here's a bazillion more hugs.

  6. My heart goes out to you...really. The bugger with colon cancer is that it is the easiest to cure...if you catch it early! My Dad has had it and my colonoscopy last year caught mine in time so they cut a huge chunk point is, you and your brother really REALLY need to have regular scopes!
    And you stay as long as YOU need to stay...he's your Dad. Dont leave there with any is just too damned short.

  7. They say that God never gives you more than you can handle, but it sure does seem to me that it's someone else's turn to be strong -- you've had your share, and then some ....

  8. My heart and thoughts go out to your and yours.

  9. Robin- do enjoy your visit and your time with your Dad. Knowing this may be the last time is so tough. Please take care and do whatever you need to get what you can out of this visit and preserving the precious memory of your father.

  10. Dear Robin,
    Having gone through all of this with my own father back in the early 90's my heart goes out to you and yours in a big way! I know this is a difficult time for you and everyone else. I wish I had words of wisdom to share with you to make this time easier to cope with; unfortunately I know that is something you must sort out for yourself. So I will leave you with this; my thoughts and prayers are with you and your family as you find your way towards peace for this sad event. ~Hugs

  11. Robin: I'm sorry. Please do not torture yourself. Death is part of life, and you do not have control over it. Be strong and be well. I am sorry.

  12. Hi hon,

    I'm so incredibly, deeply sorry. (Are you getting sick of hearing that yet?) I don't know what else to say. I wish I could fix this because I know you, of all people, deserve to be happy and deserve to have your friends and family healthy. But I'm at a loss, and all I can offer is meager support in the form of friendship.

    Again - let me know if there's ever anything I can do, okay?

  13. *hugs* I'm sending you love and good energies darlin!

  14. Giving you a big virtual hug during a difficult time. Hope you can spend as much time with your dad as possible. Sending him healing energy to minimize any pain/discomfort....

  15. Robin, I am sooo sorry. There aren't really words. I would stay there as long as possible, who cares what the brother and sister in law think, it's your dad!

    Sending all my love!!! :(

  16. I'm so sorry. Cancer sucks. I wish you strength and pray for peace.

  17. Uhg, this is awful. I'm sorry Robin.


You can now add YouTube videos in your comments by copy/pasting the link. AND/OR you can insert an image by surrounding the code with this: [im]code[/im]. In the case of images, make sure that your code is short and simple ending with something like .jpg. If you want to use a pic from someplace like Google Images, click on the image, then click on View Image. That is the code you want!

Dazzle Me!