Yesterday the kids headed back to school, and I started to settle back into my weekly routine, beginning with my Monday at mom's house.
The morning greeted me with a fierce wind and a crisp chill in the air. As I pulled up to mom's house, I hurriedly got the boys out of the car, struggling as I tried to balance my one year old on my hip while carrying in some other items; all the while, the wind was wildly blowing my hair in my face, making it difficult to see what I was doing. We rushed up to the front door and rang the bell. And waited. And waited. And waited. I fumbled with my keys as I tried to find the right one for the screen door. Ever since dad re-keyed the front doors, I've been having trouble with my key. After a couple of minutes, which seemed much longer than a couple of minutes while battling the winds, I managed to get the lock opened and walked into the dark, empty living room.
This has become our routine: me, ringing the bell and fumbling with my keys, while mom sits in her back bedroom ignoring the sound of the bell. She doesn't want to come out and answer the door looking like a "plain Jane". She's been doing this to my Aunts and Uncle who have been going over weekly to help her as well. Fortunately for me, I have a key to the house. Unfortunately for them, they don't. They call on the phone; she ignores the calls. They usually end up texting or calling me and I tell them to keep ringing until she answers. Eventually she answers the door.
As soon as I entered the house, I opened up the blinds to let some sunlight into the room. I set up the "Thomas The Train" tracks and train for the boys to play on, then went in search for my mom. Of course I knew right where she was at. I knocked lightly on her bedroom door and said, "Mom, it's me," as I let myself into her room. I found her in the dark, sitting on the edge of her bed with her back slumped forward and arms folded across her chest. She looked over at me and immediately began filling me in on everything on her mind, jumping from topic to topic and barely pausing inbetween or allowing me to get a word in edgewise.
"Were you told how severely sick I am? I'm really severe, my stomach. Since Saturday. I've been so severe and sick and my tummy hurts real bad in here too," she rubs her tummy as she talks to me, "and yesterday I didn't even go to church 'cause I felt too severe and I even threw up last night too. And my nose and my eyes were real wet too, with watery stuff on them too and it's so weird, I'm so weird."
I tried interrupting her to ask her what she had eaten yesterday. I strongly believe there is a connection between her eating (or lack of) and her stomach problems. She stared at me with a blank face while I repeated the question to which she finally answered,
"Your dad made me eat some salad stuff for dinner 'cause I wasn't real hungry but I didn't eat much yesterday so he told me to eat some salad then. But my stomach has these pains here and I hope I'm not getting that real severe stomach sick thing that comes, thas happens around November-I hope I'm not getting that. I'm just so sad, I wish the doctors would help me with my stomach problems too, I'm just so sad. I feel so severe. I just hope I'm not dying, I hope I'm not gonna die but I haven't seen anyone spiritually, I haven't seen my mom, so no, I'm not dying but I feel so sad and so weird, with how I'm changing too."
Without skipping a beat, she continued, "I'm just getting so weird and I feel like I'm really looking so weird too and when I wake up my hair is sticking up like this," she pulls her hair straight up, "and I look like Sister [So-n-so] from school-from church. And even though yesterday I put some make-up on and your dad was real okay with me. He says he's still okay with me and that I still look like when I was a teenager, but I don't think so, no. He still tells me every morning 'love you dear' so he's still happy with me, thank goodness, even though I'm looking so weird and different. And I just hope that you're okay with me too with how I'm changing."
At this point in the conversation (this is a recurring conversation every time I see her), I reassure her that she looks like the same mom I grew up with and that she looks just fine without her make-up on.
I asked my mom if I could make her some toast to help settle her stomach.
"Toast...I'm trying to remember what toast is..."
I reminded her that it was bread with peanut butter and that she used to make it for me when I was sick and when I was pregnant and unable to keep any food down. She insisted that she wasn't feeling hungry and would not eat it. I decided to give her until lunch time before I forced her to eat anything.
I'm concerned about her eating situation. Her pickiness has made mealtime extremely difficult. There are approximately 10 different menu items that she will eat between breakfast, lunch and dinner. Lately, she feels too "severe" to eat at all. Like I mentioned earlier, I believe this is a combination of the medications she is taking and the foods she is/isn't eating. She starts the morning off with Slim Fast and medication. Slim Fast has been known to be the source of gas and stomach discomfort. Trying to argue this fact with mom is about as productive as trying to pull a full-grown oak tree out of the ground with your bare hands: it simply won't budge. I think the Slim Fast itself, along with the fact that it's pure liquid, and in combination with her medication, causes her stomach to become upset. Once her stomach is upset, she decides that she doesn't want to eat because it will make her feel worse. I know that when I am very hungry, I start to feel a little nauseous and headachey, which is what she expresses that she feels often. I think that she is also having hunger pains but has lost the ability to recognize it as pains due to her hunger. That is common with this disease (from what I have learned); to lose the ability to know when one is full or hungry. When she starts to feel sick like this, she "psychs" herself out and I think she actually talks herself into throwing up. It starts with exaggerated gagging noises, followed by her spitting out "watery stuff", and then usually finishes with her gagging her food/drink out.
Towards the beginning of this disease, mom put on a lot of weight. Again, this is most likely due to the fact that they lose the ability to tell when they are "full", and they tend to overeat. Then there comes a point where they lose weight. This can be due to many reasons: pickiness, losing the ability to swallow, etc. About 1 1/2-2 years ago, mom's weight was at her all time heaviest, around 180 lbs. She is now down to 140 lbs (which is even below her average weight) and I'd say a good part of that weight has been lost within the last 6-9 months. She thinks it's great and wonderful that she is losing weight, but it is not being done in the right manner and I worry with how quickly she's been losing it.
I left my mom in her room to rest for a while and went into the office, where I drafted a chart to track what mom is eating everyday as pictured...not the greatest picture in the world, but you get the idea ;)). Basically, it tracks what she is eating everyday for breakfast, lunch, dinner and snacks inbetween. As you can see, Sunday she hardly ate a thing, which is what I'm afraid has been happening far too much lately. I printed out a few copies and put them in a 3 ring binder. I shared this information with family members who go over to her house and asked that they could write down what she is eating and approximate quantities of her food. I'm hoping that this will help give us, and her doctors, a better idea of what is upsetting her and work on how to address it. Of course, I have my theory on her stomach issues, but having it written out will be beneficial in taking it to her doctor. Sometimes patients respond better when a doctor tells them what the problem is then when a family member tries to tell them.
I explained the chart and the reasoning behind it to my mom. I don't think she understood much of what I saying and I don't have high hopes that she will fill it out herself. That is why I talked to family members and my dad and asked them to track her eating everyday, as a group effort.
A little after noon, I went back into mom's room and brought to her attention that it was past lunchtime. She very faintly shook her head and said,
"No my stomach is still hurting, I'm not hungry."
I suggested that she might feel better if she eat and was pretty insistent with her that she needed to get some food in her stomach. I gently took her hand and pulled her up and off of her bed and down the hallway to the kitchen. To my complete amazement, mom was compliant; although she did not want peanut butter toast. She wanted her usual turkey, tomato and american-sliced cheese sandwich with lots of mustard and submarine oil. I was just happy that she ate.
I was not with her later in the day, so I don't know if she ate later on or if she started to feel any better, but hopefully it's all being written down on her chart. Hypochondria is a common symptom with her disease, and I know sometimes we all get tired of hearing the same conversations every time she talks (about how "severe" she is feeling). While we sometimes have to ignore some of the complaining, I think we also need to help her problem solve so she can be more comfortable. Her "severe" stomach problems could be a simple problem to solve. Solving is much harder than it sounds with a person with dementia, however, as they cannot comprehend much and are not very agreeable with what you want them to do. We are meeting with a geriatric doctor for the first time this week, who specializes in care for the elderly and people with dementia; this means all of her health issues and medications will be taken care of by ONE doctor, rather than the several she has been seeing. Hopefully this will help in managing the "severe" aches and pains she has been feeling.