Diagnosis: ALS and Dementia

Katie, Betsy & Kristi

May 2010
















Betsy was recently diagnosed with ALS and Dementia and I had not seen her for 2 years.  I have just returned home from my trip to Oklahoma to visit her.  It was heartbreaking to see how she had declined in health and how she shows absolutely no emotion.  I knew something wasn't quite right 2 years ago.  Betsy was very forgetful and didn't show a whole lot of emotion even then.  But it is so much worse now.  I wish she didn't have this disease, but the dementia makes it even worse.  Her fingers are usually bent over, as if she is holding a pencil, but she can straighten them.

As I observed, A typical day for Betsy is:
7:00 a.m. - Dan gets Betsy out of bed and dresses her.  Then he prepares her breakfast.   Dan had prepared some delicious whole wheat pancakes and bacon one morning,( but she mostly requested donuts. )  She then rolls her wheelchair to her spot on the sofa and watches tv and movies all day. This is what she chooses to do.  Dan leaves for work around 8:00 or so.  Beside her on the table, she has a glass of water, a box of kleenex, her pills, her cell phone and the house phone.  When the house phone rings, the number is displayed on the tv screen, and she doesn't answer it unless she knows who it is.  Kristi pre-sorts all Betsy's pills by day in one of those Monday-thru-Sunday pill containers.  She also goes outside in the sunshine sometimes, with help from the family.

9:00: Snack: Ice cream (that's what she requested when I asked her if she wanted a snack.)

11:00 Lunch - Dan prepares lunch and has it in the refrigerator, except when Kristi is there, she fixes it.  A typical lunch is either leftovers from the night before, a chicken pot pie (or other frozen dinner) or a sandwich.  The microwave is low enough so she can reach it.  Sometimes Kristi takes her to Braum's Ice Cream for a Milkshake and cheeseburger.  (Kristi lives with Dan and Betsy and is home on Tuesdays and Thursdays.  Katie and family lives in Tahlequah which is about 20 or 30 minutes away).

Around 1:30 pm. -  Mike, the neighbor, knocks on the door and brings the mail in and hands it to Betsy.  Dan leaves the door unlocked for him.

Afternoon Snack: Betsy usually has a chocolate Ensure beverage (with vitamins) for afternoon snack.  Kristi sometimes adds ice cream to it so it will have more calories, since Betsy only weighs 87 lbs.

Around 3:00 (or after?) pm - Dan comes home from work and starts preparing supper shortly thereafter which is ready around 5:00.
Dan is a good chef!!  Some of the meals we had were:
  Roast beef & gravy (He put it in the electric skillet and it cooked while he was at church), carrots, potatoes, corn, bread & Iced tea.  Grilled chicken, Green beans, Corn (It was "fried corn" like his grandma used to make, he said.), Garlic mashed potatoes & Chocolate Supreme Delight dessert (homemade) & iced tea.
 Smoked ribs (Dan makes some killer ribs!!) , smoked chicken & smoked bratwurst (?), bbq sauce,  Baked potatoes, cottage cheese, baked beans, Kristi's Cherry Crisp & Iced Tea.
Taco night: Takeout from Taco Bueno.
Cookout:  Cheeseburgers, lettuce, tomato, pickles, potato chips, Dr. Pepper & Ice Cream

When Betsy smells food cooking, she rolls her wheelchair to the table, regardless of when the food will be done.  Sometimes she sits there for an hour waiting, even though Dan tells her it isn't ready yet, etc.  Dan also cuts her food into small pieces so she can eat it better.

Throughout the day, Betsy stands up and pivots around into her wheelchair and rolls into the bathroom.  Then she comes back, parks her chair, puts on the brakes and pivots around onto the sofa.  She does this many times a day.  She also picks "lint" off her pants for 45 minutes straight.  But there is nothing really there.  When she picks at the "lint", it makes a scratching noise (because of the material of her pants: cotton/polyester?).  Katie, Kristi and I went to the mall to see if we could find a softer material that would be noiseless at lint-picking time.  We looked for some soft jogging-type pants but there were none in her size (Size 4).  We bought white and navy pants and 2 tops.  I am still looking for some soft leisure-type pants to send to her.

Betsy goes to bed around 9:00 or before.  Dan gives her a shower & washes her hair.  I'm not sure if Betsy can brush her own teeth or if  Dan does it.  (I didn't ask) He also cuts her hair when it needs it.   He dresses her into her pj's and puts her to bed.  He wakes up during the night to turn her over, because she can't do it herself.  Her legs do not work.

Dan makes a list and does the grocery shopping.  Kristi helps with the house cleaning.

I don't want it to seem like I have left Katie out of all of this.... she doesn't live in the same house; however, she comes to see Betsy and brings Haley to see her "Grammy".   It was Katie who took Betsy to the Emergency Room at the hospital last month and stayed with her when she was having severe stomach pains.

Please keep Betsy and family in your prayers.