I've gone back and forth about writing this post. I've written and re-written and debated if I was being overdramatic about the way things are going. I thought maybe things would improve and that Mom was just having a bad day (or two). But in the pit of my stomach, I know the tides are changing. We are entering the end stages of this disease.
From the beginning, we've known that this illness would be terminal. The only question has been how it would play out. Many people are taken from pneumonia or other infections; others simply stop eating. It is the process the body goes through when shutting down. Over the past 8 months, Mom has lost over 60 pounds. Every month, and now every week, she is losing weight (she lost another 4 pounds last week). Her eating has gradually declined over the months. Last fall, she was eating full-sized pb&j sandwiches. Then she started only eating about half, so we were making her half-sized portions. Eventually, those were cut down to quarters. Over the past couple of weeks, those quarters became eighths, and finally, within the past couple of weeks, she isn't finishing the eighths. If we are lucky, she will take a couple of bites before getting up from the table and walking away. Many times (more and more) she will sit down to eat, watch us make the sandwich, and then stare blankly and eventually walk away without taking any bites. A couple of months ago, we started keeping her food log again where we write down the time and amount of food she eats. From there, we are able to see how much she is eating per day and even per week. Up until the week of June 17th, she was averaging about 3 1/2 sandwiches a day (give or take, depending on the day) and her weekly average was 21 sandwiches. A couple of weeks ago, that average changed to 15 sandwiches per week and for the past two weeks it's dropped down to 10-11 for the whole week. As I am typing this, I am sitting in her living room while she sleeps in her room. It is after 11:00 (am); she woke for an hour but has not eaten or drinken a thing at all yet today.
Even more worrisome than the food situation is the water. She only drinks when she eats, so you can imagine where that is going. For a few weeks now, she's only been finishing one water bottle (16 oz) of water. Now, it's a good day if she gets in a full 16 oz. Most days she'll drink about 12 oz and on a few bad days she drinken as little as 8 oz. Basically, she's living on about one sandwich and 12 oz. of water a day; for this week, anyway. Each week gets worse and worse. As you can imagine, it's only a matter of time before this takes it's toll and her body begins to shut down, and I think it already is. I believe she is becoming dehydrated already. She has little urine output, her skin is extremely dry, her cheeks are looking sunken in. She is sleeping a lot throughout the day. She will sometimes nap for hours during the days; once she wakes up, she'll pace around for a bit before returning to lay down again. She hasn't been "talking" much. Her voice sounds faint and weak when she does attempt to speak, which isn't often. Her interest isn't held on anything for more than a couple of seconds. We are having trouble getting her to take her medicine (swallowing is part of that problem). She has had a couple of falls as well. Last week, my dad went to check in on her in the morning and he found her laying on the bathroom floor, halfway into his closet. The bruising up and down her side confirms our suspicions that she somehow fell and was unable to get up.
I know what you all might suggest: hospice. At our last evaluation, they told us there was nothing they can do until she either: no longer walks, develops an infection/pneumonia (has some other medical need), is in pain. Even lack of eating or dehydration won't qualify her. Yet, home health was coming in for a few weeks and has decided to close her case because there is nothing they can do for her; they are in the business of helping people get better (the nurse agreed that hospice is more appropriate for the situation). So right now, Mom is falling between the gaps of our healthcare system. I'm not going down without a fight, though. After talking with several people in my online FTD support group, and upon their insistence, I have put in another call to a different hospice company. Speaking to those who have been through this, or are currently going through the same thing, my initial instinct has been confirmed: that Mom's time left with us is limited. Whether we have weeks or months, I can't say. If she continues her decline at this rate, I would say a few months at best. Needless to say, these are rough waters for us right now :(