Saturday, March 31, 2012

Happy Anniversary and Welcome to the A to Z Challenge 2012

Today is a bittersweet day. Today is the one year anniversary of this blog. I started it last year, with the blessing of my father, as a way for us to deal with my mother's deeper descent into the world of Alzheimer's. It was not intended to make fun of Alzheimer's, as so many incorrectly assume from the title. My father and I often tried to find the humor in life, to help us get through the tough times. We were going to work on this together, sharing stories about my mother and our family. We hoped that by sharing our stories, we would be able to work through some of our conflicting feelings. We also hoped that perhaps we could help others who were in a similar situation.

But Dad never got to post to the blog. I was going home for Spring Break last year, in mid-April, to help Dad continue to get Mom situated in her new home. I was going to offer him some moral support. And I just wanted to be with my family. My sister was also going to fly into town. And I was going to set up Dad so that he could post to the blog anytime he felt like it. But the night before I was to drive home, my father went by ambulance to the hospital. I spoke with him by phone the next day and we made some plans for when my sister and I arrived that evening. By the next morning, he was unconscious, in a medically induced coma, and never came out of it.

Trying to work on this blog without my father to help me, as this was going to be a shared experience, has been tremendously difficult. I never know what to say. I feel like I bring it down more than being an uplifting experience, as it was meant to be. That is why there are only 33 posts thus far. But, I am determined this year to make another go at it.

On my Montessori Writer's Thoughts blog, I am planning on honoring my father's memory. It is my goal this month to do the same for my mother. Only I will do it here. It isn't all going to be about her Alzheimer's. I want to share the wonderful woman my mother was. I hope it helps me continue to process all that is happening to her. And if I can speak to the heart of just one other person in a similar situation, then my job is done.

I wish luck to those of my fellow writers who are also undertaking this task for the month of April. I also wish to thank you for stopping by.

Saturday, March 10, 2012

GBE2: Confronting the Roller Coaster of the Unknown

Apparently Mom is not ready to leave us at this point. Hospice came in to do their evaluation the other morning. I kept getting phone calls at work as they alternated between my sister and I go gather information and make their recommendations. At this point, they do not see any medical evidence that shows she has six months or less to live. She is still getting short of breath at times, which is consistent with a blood clot in the lungs. Again, they cannot test for it nor can they treat it with blood thinners. She also is still ambulatory, which means she is moving around on her own and taking relative care of herself.

Her great aunt and two cousins went to visit yesterday. (Mom's dad was the oldest of 11 children, so the generations vary greatly in age!) They had a nice visit, but apparently Mom didn't know them when they came in. Once she was introduced to them, though, she was able to retain some of that information. My sister had a similar experience when she visited a couple of months ago. Mom kept introducing her as an old neighbor from 40 years ago, but with repetition seemed to be able to remember her. Some other family friends are planning to visit her later today. It will be interesting to see what they have to say.

The hardest part of this whole thing is the not-knowing. At least with Dad, when Hospice was recommended, we knew he was at the end. They could give us a timetable and it was fairly accurate. With Mom, it is a big roller coaster of just not knowing. I have a great deal of difficulty not having some control. The Great Unknown is hard for me to navigate. I know you can never know exactly when someone is going to die. But this up and down from "She's doing okay for now," to "She's going to the hospital," to "We recommend calling Hospice" to "She's rallying and doing great," is a lot. We went through this with my father for years.

As I was sharing with friends and family the "good news" that Mom didn't need Hospice, they were all so excited. "That's great news!" My sort-of-other-half hit the nail on the head, though. He said that while it was good news, it also kind of sucked to not have a direction and clear answers. I wish I could remember his exact phrasing, because it was perfect. And I just cannot articulate precisely how I feel about it.

Would I feel differently had I not just gone through this with Dad in the last year? Probably. If he were here with us, we would be holding on to each other for support. It would be easier to see the glass as truly half full. Because when they were both here, their deaths seemed so far away. Losing Dad nine months ago just thrusts their mortality into the forefront.

I am not saying that I wish my mother were dead. I really hope I am getting that across. And when I say there is a chance that the blood clot could take her today or it could break up and she could still be here for a few years, I am not trying to be negative. I am trying to be realistic. I am not the kind of person who wants to put on blinders and ignore the entire realm of possibility.

Okay, that being said, I could literally walk out my front door and get hit by a bus later today, or I could live for several more years. We don't know how we are going to go, nor when. I get that. I just don't like this type of roller coaster ride.

Wednesday, March 7, 2012

GBE2: Confrontation

It is difficult to confront your own feelings about your loved one with Alzheimer's. You love that person and want her in your life. You hate the disease and what it has done to her. You miss the person she once was and want her back. And you also want the misery to end quickly - both for you and for her. That is not an easy pill to swallow. To wish death on another person? How awful! But it isn't so much death as it is a rebirth into a world without pain and agony and misery.

But how do you confront the actual death of that person when it finally arrives? That is the dilemma I am dealing with right now.

This past Saturday, I was deeply napping because I was really sick. I am not a napper. So, imagine my annoyance when my phone started to ring. I figured I could ignore it, but I recognized the number as that of the nursing home where my mother lives. They were calling to tell me that my mother was having "an episode" and wanted to know if they should send her to the hospital. Apparently they had woken her up from her nap because it was time for dinner. She was short of breath and her already high blood pressure went up even more. She wasn't in any pain and oxygen seemed to help her calm down. Her numbers went back to normal and they assumed it was a panic attack. I figured if she was okay, it probably was a panic attack. After all, she has dementia and they woke her up. She was probably confused and got scared. I had the smallest twinge in my stomach, similar to when my father went into the hospital a year ago.

They said they would call in the doctor and would get back to me. About an hour later, they called back and said she had had another small episode. The doctor didn't think it was necessary to go to the hospital and gave her oxygen and Lasix. Again, it seemed to be helping and all seemed to be okay. That twinge in my stomach grew. I went to my friend's house for food and mindless TV. A few hours later I called to check on her and she was resting comfortably.

I slept hard that night, relieved that she was okay. But then that damn phone woke me out of a solid sleep again at 9 a.m. They were taking her to the hospital because she was having yet another episode upon awakening. I stayed calm and woke myself up. I sent a message to my sister via Facebook because she was working out of the country. When I called the hospital a little later to check on her, it sounded like they were concerned about Congestive Heart Failure. Now the twinge had turned into a pit.

There was a lot of confusion when I was trying to talk to nurses. They all seemed to want to brush me off. One even handed the phone to my mother and asked her permission to speak with me. I wanted to shout, "Do you understand that this is an Alzheimer's patient? I am her primary contact!" It turns out that the hospital was in the process of updating their computers and somehow Mom's file came up with Dad still as her primary contact.

My sister got back to the States on Monday and quickly sorted out contact information. She took over the details with the doctors and nurses. She had the time. I was knee-deep in CPSE evaluations and meetings for some of my students, as well as getting over being really sick. She kept sending me updates throughout the day. It was now looking like she did in fact suffer from a small heart attack, but should be just fine. Her numbers were fine. She wasn't in any pain. All was looking good. But that pit turned into a rock.

By Tuesday, doctors had determined that she also had kidney disease. Because of the kidney disease, they couldn't properly treat the clot and heart issues. They said that we could order a bunch of other tests and try a bunch of different procedures and other medications. Or, we could consider physician-prescribed comfort care or Hospice.

Boom. Confronting death. Only this time it wasn't as imminent as Dad's was. With Dad we knew it was going to be three days, because we had to stop his feeding tube and water. And sure enough, it took three days. But with Mom, there wasn't a real time frame. The blood clot could come loose and she could easily have another heart attack and BAM be gone from us. Or, she could linger in her condition for quite some time. It happens all the time with people.

So, here I am. Stuck in limbo. Confronting the death of my own mother, a mere 9 months after my father died. To make matters worse, the H-word was given to us on my father's birthday. It was also the six-year anniversary of my mother's older brother's death from Alzheimer's and heart disease, plus a few other ailments.

It was also a week after I started a blogging journey on one of my other blogs about dealing with the loss of both of my parents. A bookseller acquaintance of mine gave me a book last summer right after my father died. It's called They Live On and the author writes about dealing with the losses of her parents so close together. He thought I might get some comfort out of reading someone else's experience. And of course he was hoping I would do a review of it, to help support a local author. I couldn't bring myself to read it and to feel all of those emotions until then. Instead of doing a traditional review, it turned into a sort of "Julie and Julia" thing where I was paralleling my own experiences and feelings with that of the book. Ironically, the last post that I had managed to do before I got sick was called "Just Take Her." The author of the book was talking about wanting her mother to heal from her brain tumor and cancer, but realizing it couldn't happen here on Earth. I paralleled it to my own feelings about my mother and her Alzheimer's. Having this happen was almost like having those prayers answered.

Read the series of posts from They Live On here. At the time of this posting, my series is not yet complete. But this link will take you to all of them in reverse chronological order. And I am sure that I will have several more posts completed soon.

As of this moment, as I am typing this, I have no idea when my mother is going to pass away. The waiting is making me crazy. I have to confront a lot of my own issues. Do I want to see her or not? Will I just agitate her like usual and cause her more pain? Can I detach myself enough to just hold the hand of a sick woman? How is this one going to happen? Will I be there for that final moment? Are we going to know like we did with Dad?

I am sitting in a self-imposed silence because I can't stand the sound of any music or TV right now. I am already tired of talking to family members on the phone. But even the silence is making me crazy.

Part of me wants to just scream and rant and rave. I cried like a baby last night, several times. I have to wait until we have more information from Hospice and the nursing home before I start telling more friends and family about it. But I am avoiding confrontation with my sister by following her lead and working with her. The last thing we need right now is to argue. We need each other, because we are all we have left.

Thursday, March 1, 2012


My friend and I decided to watch the movie 50/50 the other night. We had every intention of going to see it in the theatres, but never made it. So, when I saw it in the RedBox, I decided to grab it.

It is the story of a young man who is diagnosed with a rare form of cancer. He is given a 50% chance of survival and enters into chemotherapy. The movie has amusing bits from his best friend who is his biggest supporter. There are awkward moments between him and his young therapist, as well as with his girlfriend. And of course he has a mother who is absolutely crazy with worry. It chronicles the ups and downs of having cancer, the fears and worry. It also demonstrates the need for lots of support. I loved it and cried, of course.

What is missing from the previews is the fact that his father suffers from Alzheimer's. His mother is torn between caring for her husband and caring for her son. His father is present in the discussions about the cancer, but of course has difficulty following all of it. I thought his character was well-played. I appreciated the difficulty in making major medical decisions without the counsel of one of your parents. And I am still ever so grateful that my mother did not have to endure the hell of dealing with the death of my father last year. It would have been so very confusing for her.

I recommend the movie because I simply liked it for its story and for making me cry. (I like tearjerkers.) The part that Alzheimer's plays is quite small, yet still present. Unless you are familiar with it, you aren't necessarily going to notice it.