What a roller coaster ride I am on. Friday I thought my mom had one foot in the grave and then yesterday I go into to her room – she is sleeping and I wake her up – and the first thing out of her mouth is "I’m hungry, when is it time for lunch? So lunch comes – cottage cheese and peaches with pudding for dessert and she proceeds to eat about 3/4 of it. She drinks milk (which she never used to do unless it was with cereal) and then asks me to get her some coffee.
I spent a couple of hours with her, and she was as lucid as I have seen her in a long time. I felt bad about leaving, because she looked like she could get out of bed and walk around the block. As I was driving home, I called her to see if she was bored and she told me she was sleeping and that she was tired and wanted to go back to sleep. OK – so much for all of that energy.
While I was with her, I got her sister on the phone. My mom had two sisters (both nuns – Sisters of Saint Casimir in Chicago- one taught at Maria High School and one was a nurse at Holy Cross Hospital). My mom’s oldest sister (my mom was the baby in the family and there was one boy in the mix as well – my uncle Vic who died two days before 9/11 so no one could get to his funeral) died last October. She had anorexia of all things. My mom had pursued a fitness regime ever since she retired. My mom and her oldest sister were always competitive – the looked almost like twins and had very similar personalities. When my mom started to lose weight, Sister Margaret started as well – except at one point it got out of hand for her.
I read an article recently that stated that the next highest risk group for anorexia other than young girls are senior women. And anorexia killed Sister Margaret. So now my mom’s other sister, Sister Teresita, is in the process of losing another sister all within one year. I have been keeping in close contact with her, so she has ridden on the roller coaster along with me. Friday my mom was so out of it I wasn’t sure if she would last until her sister arrives this coming Thursday. So on Saturday when mom was so lucid, I got Sister Teresita on the phone so that she could talk to her while she was lucid. She told me she really appreciated that.
So all is going along as well as can be expected when I call my mom last night. The first thing I am greeted with is "Jan, what the hell is going on here. They are not feeding me, they won’t take me to the bathroom – they even woke me up at one in the morning (and it was only seven at night).
The nurse was in the room with her so I spoke to her. The nurse said that she was getting agitated (something very common with the spread of cancer, especially if it is spreading to the brain) and that they were going to help her go to the bathroom and give her something to calm her down.
I called my mom a few minutes later and she did confirm that they took her to the bathroom but that they literally had to carry her back to the bed because her legs were not working. My mom’s take on that was, if they let her get out of bed and use her legs, they would work. The problem is that this is probably a result of the cancer spreading to her brain and that ultimately affecting her legs.
I spoke to the nurse this morning. She said my mom was agitated for a while but then calmed down. My mom wants me to get them to put a catheter back in for her – but the doctor is hesitant as she can, when she goes into one of these episodes, pull it out like she did the other day and that is not safe for her to have that inserted and taken out on a regular basis.
The sad thing was that at one point my mom said to me "Are you on my side or their side". The cruel part of all of this is that you get periods when the person is lucid and then periods where they are not, but there are also periods where they slip in and out – and that is the toughest. One minute they are there, and then they combine it with delusion – and consequently you do not know what to believe and you begin to wonder if they are telling the truth and the others are lying to you.
I have spent enough time there to be very comfortable with the care they are giving my mother. Also, when her sister comes this week, she will be spending a lot of time there – so she will be able to see if anything is awry.
My mom said something to me yesterday that makes me feel that she is frightened about death. She asked me about her decision not to recessitate.(spelling?) – She asked me if she changes her mind and wants to be recessitated, would that affect the type of care she had. I told her that her health care decisions were hers and that I would only make them when and if she ever becomes unable to make them. I also told her that her care would be consistent no matter what she decides. I then asked her what she was afraid of – and she told me that she was afraid that people were closing the lid on her. I had that conversation with her yesterday afternoon – and she repeated that she did not want the lid closed on her again in her agitated state last night.
I am going to let the hospice social worker know about this. It seems that my mom is fearing that we are giving up on her life, and nothing could be farther from the truth. I think she needs to have that reinforced as we move forward.
So, I called her again this morning and low and behold, everything is fine – she ate breakfast and she was tired and wanted to sleep. So I told her I would call her at dinner time (I have a lot to do today and will not get a chance to get out there – plus I am going back to work tomorrow after being off for a month and I will not be able to be there for as much time as I have been) and we’ll see what happens then.
As you can see, this has been up, down, up, down, up, down. It is very tiring emotionally and the only comfort that I have is that, in my heart, I feel I am doing all that I can and the best that I can for her.
I think all of us, at some point in time in our lives, will be faced with this. Hopefully we can all learn from our experiences and help each other out while we are going through them. That is all we can do.