Wednesday, March 25, 2009

Here I am, sitting in front of my computer, trying to put into words all of the craziness that has been my life for the past few months. There has been a lot of drama in our family lately, some more pronounced than the everyday drama that is normal at this point. Between losing a job, trying to find a new one, possibly moving, selling/renting out house, and thinking about basically living apart from my husband for a year, my emotions have been on complete overdrive. Oh, and add in the hormonal craziness of pregnancy that I have talked about before. It really is amazing to me that I make it through any day without melting into a puddle of tears.

But one thing has been the hardest to deal with through all of this. My grandmother is dying. It sucks, and there is no way around it, or to say it so that it doesn't sound so bad. She is dying, and she doesn't have much time left. Now I know that death is a perfectly normal and natural part of life. I fully accept that. In fact, when I was working in hospitals, I always loved working with families and patients who had terminal illnesses, or who were actively dying. It sounds totally morbid and bizarre when I read it in black and white. But being allowed to sit with a person and help he or she and their loved ones through the process of dying is an amazing privilege. It is a time when people really need to talk about what they are going through, but unfortunately, many people are too uncomfortable to hear a lot of what needs to be said. And of course it is a sad time for everyone, but it can also be very therapeutic to be able to talk honestly about what everyone is going through, even if some of the feelings are quite ugly and scary.

My grandma has cancer. Stage IV cholangiocarcinoma, which means it is inoperable and metastatic. It is also a very rare cancer, that is almost never detected until it is too late to "cure" it. Now, from work experiences, and losing other loved ones, I always thought that having terminal cancer would suck, but at least it would give the person and their family time to say goodbye, spend time together, and comfort each other through the whole thing. And the hospice programs out there are simply amazing. The hospice philosophy really addresses every need of a dying person and their family, and tries to help everyone through the process with as much respect, dignity, and support as possible. I always thought sudden deaths were so much harder because you just don't know when something might happen, and there is a chance that things could be left unsaid or undone. But the fact that this woman is dying is absolutely killing my family right now.

My grandma is an amazing woman. She dropped out of high school and got married when she was 17 years old. She has raised 7 children, has 23 grandchildren, and almost 16 great-grandchildren (there are a few that will arrive in the next few months). She worked both in- and outside of the home, and I always thought she was one of the smartest people I knew. She has always been independent, joining classes, going out with friends, traveling, etc. And she was a lot of fun. Growing up, we spent part of almost every weekend at her house, celebrating birthdays, swimming in the pool, and having sleepovers. She even taught me how to do a headstand when I was younger!! And she had always been healthy and active. After my grandfather passed away 5 years ago, she had a rough time, but seemed to be doing better the last few years. She and her home were the hub of our enormous and crazy family for as long as I can remember. I have the most amazing memories of all of us swimming and barbequeing at her house for hours on summer nights.

Unfortunately, as usually happens over time, the family has grown apart. Some of it is just due to normal everyday events. All of my cousins and I have grown up, gotten married, and we are all having our own families. So it is a lot tougher to have to entire family together at any given time. There have been some more divisive events that have occurred over the past few years, but with a few exceptions, we all keep in touch and see each other when we can. However, with this illness, the family is trying to work together as much as possible to take care of my grandmother for as long as she is with us. But in addition to the actual cancer, and the medications and side effects that come with it, my grandma has also had a lot of mental and emotional changes over the last 6 months. The last 2 months has been especially hard. Is it dementia, or from the cancer? Does it really matter? Not really. She has started to have a lot of memory problems, gets angry and agitated very easily, and needs supervision and care 24 hours a day. It is hard on anyone to take care of an aging parent, but when that parent is suffering from both a physical and mental decline, the toll on the caregivers is enormous. And though her children are trying to work together as much as possible to care for my grandma in their homes, it is hard. I can see the toll it is taking on everyone, trying to balance the grief and anger over losing a parent with the mental stress of caring for someone who isn't really the person we are knew and loved for so long.

I am pulled in different directions over the situation. The social worker in me wants to put a plan into action, and can be very practical about what decisions need to be made. Maybe she needs 24 hour nursing care and aides to come into the home, or maybe she needs to be cared for in a skilled nursing facility, where people are trained to deal with dementia and the behavior it brings. I know it is not worth the family become angry or bitter or burnt out, when what we need to do is concentrate on the time that we have left with this amazing woman, the matriarch of our family. But how do you say that you can not take care of your parent? It feels like you are giving up in a way, that you can't "suck it up" for a while. It feels like a betrayal of her and all that she has ever done for us. But what is the price that this family will pay?

I am trying to get through this whole thing, and balance the other things going on in my own immediate family. I can not imagine what it will be like when my grandmother is no longer here with us. But I also know that, in a way, that woman that I have so many memories of is not the same person that I see now. There are times when she seems like the same old grandma, but often she is distant, removed from what is going on around her. And I know that it must be terrifying for her to experience. To not remember the simplest things, like how to count money. To become suspicious of your own children, or lash out towards them, and then have no recollection of the event. I know that everyday the person we know and love is slipping a little bit further away, retreating into a place that we may never find. I just hope that we can all help each other get through this time, and keep remembering the woman who gave us this huge and wonderful family, with so many happy memories. I hope we come through this as an even stronger and closer family, who can know we did the best we could for her at one of the most important times in her life. And I hope she continues to know how much we love and treasure her. I hope we remember that she loves us, and would do anything for us, even though she may not be able to express it in the right way.

I hope.

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