Wednesday, June 26, 2013

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?


  1. Cassandra, my heart goes out to you. Dementia is such an evil disease. The thing with meds is they can treat some of the symptoms. And, they may not work the way they are supposed to, but they might help, too. You can try them, and if there is an adverse reaction, you can discontinue it. You will probably notice effects pretty quickly. Your mom has been conditioned by the vomiting to avoid food. I think it was a brilliant idea to substitute instant breakfast for Slim Fast. I hope that works, and it sounds like it has, at least for now. And now is what you have. I don't think your mom has reached the stage of refusing food, as she likely will sometime. It sounds more like she has "learned" to avoid food due to the stomach upset. The nice thing about dementia is that she will forget this, as she experiences more time without vomiting. This is probably when you have to do the BRAT diet - you probably use it with your kids when they have been sick - Bananas - Rice - Applesauce - Toast. It may take awhile for her to get past the fear of vomiting, but this should help.

    Keep getting the medical input as you worry about things. Have doctors explain how the body functions, and what things to watch for. Water is important, and sometimes it helps to have some special cups or glasses, or a special straw. These might make her interested enough to try and drink more. Also, remember that foods have fluid in them (I learned about that as my dad had congestive heart failure, and we had to keep track of all fluid). She likely got dehydrated due to the vomiting, so if that stops... And, if she won't go to the restaurant she liked, could you get take-out?

    I was incredibly fortunate to have a good connection with our family doctor, who worked with me and my family for about 40 years (before he retired last year, the rat! - but he did stay working through the illnesses of my parents and my aunt, for which I thanked him profusely). His mother had had Alzheimer's, so he had been through something similar. He was quite compassionate, and also "got" my sense of humor, as I chose to laugh about some of our "adventures" rather than to stay terribly sad. I never laughed "at" my mom (or my aunts, who had other forms of dementia), but I sure laughed when my aunt wore her Depends over her head, or wore her bra backwards, or Mom would say "Hey!" when she was upset about something.

    One medication story: We tried Wellbutrin with Mom, hoping it would improve her concentration. Yeah, we did one dose, as that was more than enough. After she had the one dose, I awakened at 3 am, and she was sitting in the rocking chair in my room, watching me sleep. Her attire? Sweat pants, a necklace, and sneakers. I dearly, dearly loved my mom, and I miss her terribly, even eight years after she passed away. There were times in the dementia journey that were horribly hard, and other times when things settled down for awhile and Mom was content. You are clearly in one of the horrible stages, and it is my prayer that you will quickly be able to get to the "content" stage.

    I'm sorry for such a long post. I wish I was close and could give you a hug. You are in my prayers.

  2. Hi, I'm a friend of your sister and an RN. What did they give her? Megace and Zofran? Neither should upset her stomach although I understand what you're saying about her having lost awareness of hunger. In that case the appetite stimulant may not work but it's still worth a try since it won't hurt. Is she drinking okay? She can go 3 days or so without eating but she needs to at least be drinking water everyday or you need to take her into urgent care again. We're taking care of a grandma with Alzheimer's right now and the stages are similar. Try not to stress, it's just another phase :)