Wednesday, December 28, 2011

Burnt Out

Christmas 2011 has come and gone.

This is what I have learned about Christmas, there are positively wonderful moments and then there are sad and depressing moments and some in between. THAT IS NORMAL and I have to allow my feelings through it. In a "normal" Christmas without death hanging over, there is anxiety about getting everything done, deciding what exactly "everything" is and plowing forward. I did keep it simple this year, especially with my melanoma experience and George's boards in the middle of it and it was manageable. It was actually really good. I experienced highs of seasonal lights, giving and receiving of Christmas cards, the excitement of my girls, and Silent Night sung in candlelight at church. We had a weekend in New Orleans and it was SO good to get away.

Just got off the phone with the hospice social worker as she had visited with Mary yesterday. I thought I was emotionally "okay" with dealing with Mary, I thought I had "managed" the holidays. I talked with the social worker and she asked how Christmas with Mary went, fairly easy question, right? I started talking and then the emotions came up. In reality the part of Christmas we spent with her which were just visits to the nursing home were dreadful, really really dreadful. It is horribly depressing and sad and one cannot come out of a visit unscathed. But George and I powered through it, we brought presents for the girls to distract them on Christmas Eve before going to church services and then again on Christmas day.

When we walked in on Christmas day, as she was laying face up in her bed asleep, both George and I thought the same thing. Is she still breathing? It wasn't quite relief that she was still breathing. She is now a shadow of her former self. She is bony everywhere, she is in pain. She now has the rash around her mouth area which is a lack of nutrition. She still sits up at times, but there are no positives, no smiles. Her Christmas cards sat unopened. She does pull through to boss me around in small ways, that's how I know she has more life in her.

But if you power through a visit, and put on a protective shield to get through it, the shield has to come down, and I didn't realize I was putting up the shield. Yet it has been coming down the last few days and I fight feeling these sad morose feelings. We are waiting for her to die. We have been waiting for a long time now. She is suffering and we are suffering. I am burnt out. I visit less often especially with the girls out of school and when I do visit, it is tough. It takes a lot out of me to go. This has been going on for too long. Who knew she would hold on in this state. I really want her to let go. The pressure has been ongoing and seems like it will never end.

How long has this been going on? She was diagnosed in September 2010, which was fifteen months ago or 65 weeks or 456 days. Four hundred and fifty-six days of this hanging over our heads. No wonder, I'm burnt out. Her health actually began to decline in December 2009, starting with a case of shingles, unexplained anemia, and weight loss. It became obvious to George and her doctor that it was probably cancer but it took many months to diagnose.

Three other younger people in our community have died of cancer in the meantime. A forty three year old father of three, a fifty seven year old father of two, and an eight year old girl and they all battled the disease for about a year. Why does the seventy nine year old hang on? Her cancer was not as deadly? For two of the cases, I know the aggressive form of treatment is what took the toll on their bodies in the end. There was no aggressive treatment for GaGa because of her age and condition.

All I know is I feel sad, angry, and worn out emotionally. I'm going to leave this post here because I can't wrap this up with a bow. It is healthy for me to say this really sucks, period. I don't have to make anybody feel better. And that is what I usually do and I am learning that I have to break out of what I usually do.

Monday, December 26, 2011

It's Christmas and he looks like Jesus doesn't he?

I came across this on FB yesterday from one of my friends. It was SO timely. I had been knocking around some thoughts about someone I use to be close to and the thing that I do is try to figure out what I did wrong for them not to respond to me (because that has been my habit - it's always my fault, the codependency of I am responsible for your feelings) And at this point, I know there has been very little that I could have done "wrong". I know this for sure. And then I clicked on this seven minute video and heard within the first minute and a half what was going on. It's not about me.

This reminder was so important for me because a) this man's appearance and accent would have been completely off putting to me before. (But actually, he looks like Jesus, doesn't he!!) And b) I believe everything he is saying. I am so happy to be thinking out of the box, accepting someone's words who is different than me, lives in a foreign country and yet, I completely understand what he is saying. These are the lessons I have been learning and he summed some of them up well, (my impatient self did cringe when I saw that it was 7 minutes long- there is always more evolving for me) Acceptance is such a huge part of healing. Acceptance of myself and others. I have learned to accept many things that I did not like before and it is so freeing. I enjoy nature so much more. I go through interactions with people who use to cause me distress, and now there is none. I realize that I am not responsible for other people's feelings. This is huge!
What a wonderful Christmas message!

Friday, December 23, 2011

My "Pretty Room" Updates

Before and After: Here are the latest changes to the foyer area, the white curtains had been in place since the previous owners put them in 20ish years ago and were coming apart. We purchased a new rug and my interior decorator used my old gold Pottery Barn silk curtains to make roman shades. The old PB ones had many, many indicators that kids and cats live here so we do have new rules for the "pretty areas" of the house. No food, no pens, no markers, etc.

And now the Dining Room:

The pictures can't do this space justice but we bought a beautiful new rug of soothing tones,
painted the formerly pale yellow room the same color as the living room and
the ceiling at 50% of that same color, and had new curtains made of a silky blue green
iridescent fabric. They even have pretty little tassels and are lighter in color than the living room
curtains. In the living room, there is one side of shelves where a television use to be and I didn't
know what to do with the space. Emery suggested a lamp on top of books which we walked
around and collected from what I had, and I found other pieces to go there. I LOVE having that
lamp there, it softens the room to turn just it on and makes it cozy. So for now, I am done
with my pretty inside areas and the next step is to the outside of the house where some painting
needs to take place in the front areas. And this will probably involve new gutters which is just not as much fun
but necessary.

Thursday, December 15, 2011

Wherever You Go, There You Are

I just read last year's December blogs to see where my head was. Being this is the second year of GaGa having cancer, I wanted to know where I was and how I was feeling. We had just finished the addition of the keeping room which went very smoothly but Mary was not doing well and life was overwhelming. In October 2010, she was still living independently in her apartment but really needed help and we had to fight with her to get her the help. And then she fell, was hospitalized and needed better pain management. She ended up going into hospice care and into the nursing home by the end of the year.

This December, she has become less mobile, struggling to stand up, is sleeping more and more, and eating less and it really does seem like we are approaching the end. Now that can mean months or weeks. I never thought that I would be saying every few weeks for for the entire last year, that she is slightly worse. How many variations of slightly worse are there? But at some point her body will shut down because it is not getting the nutrients it needs.

I brought something to her on Monday, and watched as she struggled with her small milk carton. It was like watching a toddler handling it but in slower motion. She quietly asked me if there was room in my house for her? Last week in more of an anxious fit, she asked me to come pick her up and take her out of the jail. Both times I had to reassure her that she was where she needed to be. In the hours and days after, it eats at me, am I supposed to take care of her in my house? And then my logical, rational mind kicks in and says that it is not possible for me or our family to do this. And more importantly, she still would not be escaping her reality. She would still be in pain, still be scared and still be dying.

I am barely keeping up with life with my immediate family as it is. Laundry stays in piles whether is is clean or dirty. I have papers for days around my desktop and bills to be paid. I have more Christmas shopping to be done and wrapping to occur. This is not even accounting for taking care of and feeding the children and getting them to school. And what about planning for a Christmas meal? My own parents' lives are completely focused on my dad's dialysis five times a day now and his precarious health.

It took me a little while to realize that her asking me this twice in a week was eating at me. Rationally I know the answer. But it tugs at me, not to do what she is asking. I have not been very good at taking care of myself without taking others into account. That is called codependence. I learned a lot about this around two years ago. I never had a strong sense of self but all of that has been changing. Yesterday, once again GaGa mentioned something about living with us and I told her that she would not be able to escape the situation that she was in. Her illness will follow her wherever she goes. She replies, "You're right." There's that old saying, wherever you go, there you are.

I wish we didn't have to keep revisiting this lesson over and over again.

Sunday, December 11, 2011

And now, back to regularly scheduled stress...

I had clear margins from my second melanoma skin biopsy!! I am thankful and relieved. And now back to regularly scheduled stress. I asked for prayers from my church, sunday school class, Facebook, and children's school. During the week plus of my active melanoma scare experience I stayed relatively relaxed. I credit this to prayers, lots of deep breathing and this journey to fear less, and love more. I purposely didn't look anything up online because there was nothing I could do about it, and I wanted to sleep at night and not heighten my anxiety.

Here is a clip from Big Bang Theory that I love and happens to be on the subject of prayer, in an offhand satirical way. (Please comment if satire is not the right word for this?) I was aware of a church growing up that wanted to lay hands on my friend to pray her head cold away. I know teetotalers. I also feel sure I know several who would want to pray the gay away.

Not so long ago, I would have seen this show and clip as blasphemous, and now I see it as really freaking funny. I had a really skewed vision of God. I feared God, felt him and the church judging me and was not open to the love coming in. I also felt I wasn't worthy of God's love. All of this is changing.

I wasn't sure if I should put my prayer request out there during "the scare" to ask my 600 friends on FB for prayers or in other places. I would definitely ask them on behalf of other people but not myself. Again, not feeling worthy of asking. Two of my FB friends, said how could we pray if we didn't know? Well, they had a point. I am worthy. I am learning this more and more as time goes on. As well as the fact, that God has a sense of humor. I really believe this to be true.

Sunday, December 4, 2011

Settle Into Your Bones

May today there be peace within. May you trust that you are exactly where you are meant to be. May you not forget the infinite possibilities that are born of faith in yourself and others. May you use the gifts that you have received, and pass on the love that has been given to you. May you be content with yourself just the way you are. Let this knowledge settle into your bones, and allow your soul the freedom to sing, dance, praise and love. It is there for each and every one of us.
~Mother Teresa

Beautiful quote! I so love the part about contentedness with yourself and the knowledge "settling" into your bones. That is what I have felt very much in the last months and I have worked really hard to get there. It could also be described as being comfortable in my skin. Whatever description you use, I feel it now. There is so much yin and yang going on for us now. It's the Christmas season and the family gathered together and we put on the Christmas music and decorated our tree and also outside with our "Griswaldish" lawn ornaments. And I'm patiently waiting to hear if my leg is now free of melanoma cells.

Last night, George and I visit GaGa at the nursing home before heading to the festive Ochsner Holiday Party. She asks what year she is born and we reply 1932. She asks what year it is now. Upon learning that she is 79, she says that's too long. She is in pain, can't use her words, can't dial a phone or change a tv channel and told us she is ready to die. The tears fell down her cheeks and when I hugged her goodbye, some fell on my new blouse. She loved my new blouse and was worried about the stain.

I am in the sandwich generation. I see the agony of illness and age and it is contrasted with the energy and celebration of youth. I have come to embrace both. It's not easy but now I know how much to appreciate my children's enthusiasm and energy. I have always been thankful for the miracle of their presence in my life as it did not come easy. But now watching someone fade away, my appreciation is even deeper.