A Drastic Change

I wasn’t ready for this stage quite yet.

I’ve tried to prepare myself for our future with dementia by educating myself on the disease. I have read books. I have gone to support groups. I network with others online. I think, for most part, I know what to expect. Yet I did not expect to have this issue at this phase in the game. I thought this part wouldn’t come until the end. That’s usually when a person refuses to eat. Or, at least, that’s what I thought.

I know that mom could pass through many phases in this diseases. I’ve read about others who regress back to toddlerhood and infancy, putting non-food objects in their mouth, getting into things they shouldn’t be touching. I know many caregivers have to “childproof” their living spaces to keep their loved one safe. Most, if not all, lose the ability to toilet themselves, shower themselves or take care of any hygiene for that matter. Towards the end phases, many have trouble walking, talking (some lose language completely), and many develop problems swallowing and lose the ability to eat.

Mom hasn’t passed through any of these phases yet. She still takes care of her own hygiene. She toilets and showers herself. She puts on a face of make-up and attempts to curl her hair everyday (though not quite like she used to). Aside from hiding car keys, medicines and credit cards, we haven’t had to childproof anything from mom. I thought she would have to pass through all of these phases before she struggled with the eating phase. I expected it. I guess it’s true what they say. No two cases of dementia are exactly alike.

Over the past couple of months, mom has altered her diet once again. One thing always remains the same, and that is her morning Slim Fast. [Although one minor modification to that is that sometimes she will skip it in the morning now and drink it for lunch instead]. A typical day consists of: Slim Fast in the morning, a sandwich for lunch (with turkey, tomato, sliced American cheese, mayo and lots of sandwich oil), occasionally fruit (strawberries or canned pineapple) or Poppycock for an afternoon snack, and an Ensure for dinner. If we are lucky, she might go out to dinner with us but that has almost become non-existent as well. We can’t even get her to go out to her favorite restaurant (Miguel’s) anymore!

In the past week, the only solid food mom has eaten is some strawberries (twice) and 1 1/2 or 2 sandwiches; this is total for the entire week. She might have tried to eat a handful of Poppycock popcorn once or twice. Half of that food was thrown up. She drinks her Slim Fast everyday, once a day, and drinks a small can of Ensure most nights for dinner. Half of that has been thrown up as well. She only drinks water (about 6-8 oz) when she takes her medication, 3 times a day (as far as I’ve noticed). Try as we might, we cannot get her to eat anything. We’ve tried soups, Gatorade, popsicles, lemon-ginger tea, breads, toast...we’ve even offered to take her shopping to pick out what she thought would sit well in her stomach. It’s no use. Mom has it in her head that if she eats, she will throw up. And when mom has something in her head, you cannot convince her otherwise.

My dad took her to a follow-up appointment with the doctor yesterday…if that did any good. All they did was order more lab work and give her more medicine: one medication to prevent her from throwing up, and one medication to help increase her appetite.

My dad is willing to do anything at this point to get her to eat, including to try this medication. I suppose it is worth a shot, but I’m a bit more hesitant-with good reason. With mom’s disease, the body loses it’s ability to make sense of bodily functions and signals. For example, mom cannot understand why her eyes water all the time; she thinks she’s “so weird” when she burps or yawns or if her stomach makes noises. She doesn’t understand these things anymore or what these functions represent. Along with this, they (those with semantic dementia) lose the sense of knowing when they are hungry or full. I firmly believe that mom’s ability to decode hunger is lost. I think a part of her stomach pains could actually be attributed to hunger pain. But she doesn’t recognize it as such. Instead of eating and ending the hunger pains, she skips meals because she’s afraid of upsetting her stomach.

If my hypothesis is correct, wouldn’t it be logical, then, to say that this medication will only worsen her stomach problems?

Mom now weighs in at 126 pounds. That means she has lost another 14 pounds in the past 5 months and I would say most of that has been in the past 2 months. If this drastic change in her eating continues, at what point will the doctors do more than just prescribe a pill? I’m not sure what this means for the future. Is it just a phase? Will she eventually start to eat again? Or has she taken a drastic turn?

Mom’s Stomach Issues

Mom has been having stomach issues for quite some time now. She will go days, and even weeks, with little problem and then suddenly a stomach “attack” comes on. Lately, these episodes are becoming closer together.

An episode usually starts in the evening or in the middle of the night. Usually. Mom starts to feel “severe” and in no time she is hovering over her small wastebasket at her bedside, gagging and throwing up phlegm and liquid. By the next day, she refuses to eat because she is afraid that if she does, it will upset her stomach and she will throw up again. So it continues for a few days: mom, throwing up while taking her usual medicines and refusing to eat.

I believe it’s a cycle. Mom’s stomach is upset. Mom throws up. Mom refuses to eat which makes her stomach even more upset causing her to become nauseous and eventually throw up again.

The part that is unclear is why she is getting sick in the first place. We’ve brainstormed many ideas: maybe she’s developed a lactose intolerance (we switched her milk to almond milk, unbeknownst to her) or maybe she’s eating spoiled food (this could still be a possibility, but we try our hardest to keep up on cleaning out the fridge). We have taken her to a specialist (the “stomach doctor”) who has done ultrasounds and CT scans. Nothing shows up. Yesterday, dad had another appointment with this doctor to follow up with past issues and again, he said that there was nothing obvious that was showing up that could be a source for her sickness. He recommended that they put mom under anesthesia and do some sort of exploratory procedure to see if anything else can be seen. Dad told him that he would consider it, but hasn’t made a decision on whether or not to put mom through this.

There are pros and cons to the procedure. The pro would be that we could possibly find a cause for her stomach issues. The cons are many: how will mom do under anesthesia? Could it cause further complications with mom’s condition or could it “push along” the disease process? If they do find something-say, maybe cancer-what good would that knowledge do [I know this sounds horrible, but if indeed they did find cancer would it be worth putting mom through chemo in her condition and with the quality of life that she has to look forward to?] These are all things to consider.

The biggest question remains: if we put her through this test, are they actually going to find something or is a lot of this in mom’s head? With semantic dementia, hypochondria is a big problem. This was explained to me at our last visit with UCLA, that with this form of dementia, their mind is losing memory/recognition of what certain bodily functions mean. For example, mom’s stomach may growl or hurt because she is hungry, yet she doesn’t understand that what she is feeling is related to hunger; she becomes confused with what she is feeling. Because of this lack of recognition, they become preoccupied with and fixated on every sensation they feel. Could it be that mom is simply hungry but cannot recognize the hunger pain? Rather than eating and putting an end to the hunger pains, mom starves herself for days, only occasionally drinking Slim Fast, Ensure or water, all the while continuing to take her medications. It becomes a cycle: not eating, feeling sick, not eating because she feels sick, feeling more sick because she’s not eating.

Within the past 2-3 months, mom’s eating habits have significantly worsened. She hardly eats (which could explain her increase in stomach problems). She’s losing more weight. She drinks Slim Fast for breakfast, Ensure most nights for dinner and eats only a sandwich at lunch time. Sometimes she will snack on fruit or Poppycock in the afternoon. I know that when I do not get enough to eat, I sure don’t feel good! Despite our efforts in getting her eat, she keeps herself on a mostly liquid diet. She doesn’t recognize most foods anymore (the other day she didn’t even know what chicken tacos were…and that was one of her ‘staple’ foods only a few months ago!) and when we try to convince her to eat something we’ve made, she protests,

“No, different things now upset my stomach, no. I don’t know how that will make my stomach feel.”

I have tried telling her over and over and OVER that her stomach upset is likely due to her medication with her liquid diet. She will hear nothing about it. No amount of coaxing or explaining will convince her. We have tried everything we can think of. We are at a loss of what to do. :(