This is dementia. It's not just a memory problem.
What you read in this blog is purely my own personal experience in dealing with Lewy Body Dementia every day.

This is not meant to offer any medical or legal advise.
I have no professional training in care giving or experiences in formal writing.
I'm just a woman that loves her husband deeply and wants to provide him with the best quality of life he can and chooses to have.
My prayer though this is "Lord, What am I learning from this; how can I use it help someone else and to glorify You?"
If just one person finds comfort in this public blog. I will feel like it was a success.

Wednesday, September 5, 2012

Waiting Game

Hubby had a follow up appointment with the dietician in our efforts to get him a liquid nutritional supplement from the Veterans Association.

As instructed at the first appt I added more sauces and gravies to Hubby's diet. Changed his milk to whole and pushed the high fat high protein and offered a nightly ice cream treat. you can only imagine my emotional  pain as I declined from partaking in the delights!
For the first 2 weeks Hubby ate well. He even had a 2 week weigh in at the time that revealed a 10 pound INCREASE! Seriously! I couldn't believe it. I honestly thought the scale was broken. Dietician recorded the date and weight and said she would see us at the 3 week appointment time.
But the foods began to have a negative impact on Hubby, as in more constipation than he experiences anyway. He began to refuse the food or limited what he would eat by half or more. I continued with sauces and gravies and  the whole milk anyway but as the saying goes, You can lead a horse to water...

Appointment finally came and another weigh in was had. This time a LOSS of 5 pounds was recorded.
During the appointment Dietician didn't take into account the previous weight gain and the now weight loss. She looked at it all as a gain of 5 pounds and asked if I wanted to continue with the request for liquid supplements.
Uh, yes.
Then I told her what I had witnessed and handed her the 3 week food diary while I  mentioned the weight loss within the last week as well as the extreme constipation and the issues that causes. Abdominal pain and more confusion.
Then I handed her my written plea for the supplements.

Request for Liquid Nutritional Supplements

A request for liquid nutritional supplements for Mr (Hubby) has been made by me, Kathy, his wife/caregiver, due to his continual decrease in weight since Dec of 2011.
On July, 2012 he had an average loss of 1 pound per week even though his appetite had remained good, and proper and adequate nutrition was consumed.
Blood test on July 10, 2012 verify that Mr (Hubby's) cholesterol, blood glucose and other levels were within normal limits.
An appointment with the VA dietician was made and kept 2 weeks later on August, 2012. Weight loss of 4 lbs was recorded at that time. A loss of 4 pounds in a 2 week period. Suggestions for increasing his fat and protein were made and handouts for educational purposes were distributed to me.

I informed the dietician that Mr (Hubby) suffered with constipation problems. He takes a stool softener daily and dosage of Polyethylene Glycol every other day or daily as needed.
I also informed the dietician that Mr (Hubby) had limited to no daily activity so an addition of more proteins and fat might prove to be a problem with more constipation but we would take and use the suggestions as part of the process to receive the approval of supplements.

A 3 week diary was maintained for monitoring consumption.

I feel it is in the best interest of (Hubby) to receive the nutritional supplements not only due to the loss of weight which I know can not be restored but as his dementia increases, the amount of food he consumes decreases. Trying to encourage Mr (Hubby) to take solid foods that will increase his constipation suffering will do nothing more than agitate him.
End stages of dementia usually result in the patient being bed bound. Solid food consumption is decreased by the patient and it is my understanding should not be heavily encouraged as the body goes through the shutting down process, yet hydration still needs to be encouraged for the comfort of the patient. Liquid supplements will provide some fulfillment of hunger and aid in hydration.
Maintaining My (Hubby)'s comfort and his calm is the goal.

Respectfully submitted

Dietician said it sounded good and she would have to submit it for approval and that she herself was recommending the supplements.
Yet with all of this the request was denied by the pharmacist. I don't know how the pharmacist has more pull over the dietician but apparently that's how they run things at the V.A.

Got to love the government. At least they are saving some money and boosting the economy since I will now purchase the supplements on my own :)


  1. Hello Kathy. My mom is now off hospice services. I have the nurses give her beet juice everyday before lunch and dinner. It seems to improve her appetite and cognition. My mom was clearly dying but since she started drinking beet juice, her health improved. Today, my mom has good days everyday. Who knew that beets would give me more quality time with my mom?

    Give beets a chance!

  2. Hi Kathy, Our doctor told us that Carnation instant breakfast is much like Ensure as far as vitamins and nutrients. I haven't compared the two but have been giving my hubby Carnation when he wouldn't eat. It may help you and is less expensive. Maybe you could compare and see if that would help if he would drink it.

  3. Hello Susan, My husband has Lewy Body and I read your reply about beet juice, how much and where do you buy this? We use Whey Protein and mix it with ice cream to make a milkshake, he loves that! It seems to help keep the weight up! Good luck with these different ideas, like hearing all of this! Lorna Baird

  4. Kudoz to you for still keeping at it even when your husband's off hospice. Seems like a real tough job, with the liquid diet and all.

  5. That seems a bit discouraging though. Considering the situation your husband was in at the time, the pharmacist should've approved the request for supplements. Maybe a second opinion would've worked then.


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