Up until this weekend, I had always considered myself to be patient and compassionate with those afflicted with an illness. I think this weekend showed me that I am actually neither of those things when it comes to Alzheimer's.
This wasn't the first time I have spent extended periods of time with my mother-in-law since her diagnosis last year. It wasn't even the first time I had spent multiple days with her since then either. It was just worse this time.
She was initially given a general dementia diagnosis in January 2012 with her first visible signs showing up in November 2011. We were told she had an early onset of a rapidly progressing dementia. She spent over a year going from one medication to another, while the family struggled to accept the diagnosis for what it was. All the while, her memory and mental stability was nose diving.
Last month, she finally had an appointment at a memory clinic with a doctor who specializes in dementia. After a day of testing, he determined that she had a mild case of Alzheimer's. Keep in mind, of the family who attended the appointment with her nobody asks questions and nobody really understands what the doctors say. Not to mention, most of them hadn't really accepted she couldn't make a full recovery from this. So, it is my humble opinion that they heard what they wanted to hear and failed to get all the information they could. Regardless, they were told the kind she has is not hereditary and that she would remain stable for the next several years.
Let me tell you something, this woman is not stable. She continues to deteriorate mentally. This doctor hasn't watched the last 18 months and the continuous decline. He didn't see in that one day how much she has changed over just the past two months. In fact, I didn't even have to be there to know that the family wasn't even completely honest about her behavior.
During times when she isn't around or people are alone with my father-in-law, he slowly begins to open up and share the part of life that nobody knows. He confided in my husband several things this weekend that probably should be shared with everyone in the family. It's a huge concern that there maybe financial issues (which my husband and I saw hints of clear back in 2011) and there is some violent behavioral issues.
This weekend was so difficult. She, the Alzheimer's, it was the giant, big fat elephant in the room that nobody really wanted to talk about. You could see it on everyone face. You could feel the thickness of it in the air. It was the source of so much anger and hurt. But, as a group they couldn't bring themselves to discuss it.
It was almost textbook grief. Each family member in their own way was exhibiting some stage of grief. Every one of them could see that she is becoming this empty shell and they all were grieving what they are slowly losing. Denial. Anger. Bargaining. Depression. I saw all of it except acceptance. I've never watched this slow process of grieving, but I'm guessing the acceptance must come with the physical loss.
Yes, I get to go through it too. Regardless of the relationship we've had in the past, she is still my mother-in-law and she's been in my life for nearly 20 years. For me, I realize that I am firmly into the anger phase of this process.
I would much rather have her be the crabby woman who only tolerated me instead of how she is now. I was beyond frustrated with her this weekend.
The questions....oh my, they never stopped. She continued to ask what things were. A fly on the window; owl statue in the garden; blanket on the couch. She would ask if she could use the restroom. That was all after she argued with me over who here son was.
If it hadn't been for the questions, she wouldn't have spoken at all. She mainly sat. She would shuffle from inside to out. She work a t-shirt, under a sweatshirt with a giant heavy hooded sweater over it all. When she was outside, she wore the hood on her head. It was 75 degrees outside and she sat in the sun.
She spent an enormous amount of time in the bathroom and barely ate anything. She wasn't sick, this is evidently a routine thing for her. She doesn't know what is happening or what to do, so she goes to the bathroom. From my observation, I believe she goes a lot to avoid accidents because she really doesn't know when she has to go.
She wore the same clothes two days in a row. I know this is a small thing, but it makes me angry that nobody will correct her. I'm sure nobody wants to deal with the behavioral side of it when she doesn't deal well with being told what to do.
I'm angry that in the past 18 months she's lost the ability to have a rational conversation. It makes me mad that someone has to physically watch her all the time. I'm angry that she has to be told over and over who I am and that she constantly asks where my kids are. Not angry with her or at her, but at the situation.
It is aggravating to watch it all happen and here the excuses and see the denial. There was a point toward the end of each day when she would finally just go sit in the truck. Usually at least 90 minutes prior to leaving, she would go sit in the hot truck and stare into the sky.
If this is mild, I hate to see what worse is for her. If this is stable and how she will be for the next few years, it's still going to be hard on everyone.
A friend of mine often says "Alzheimer's Sucks." I believe she is right.
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