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

Kathy  

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 :)

Recipe for Disaster

Since Dec Hubby has lost about 1 lb a week. His last weigh in was 2 weeks ago until today where he had an appointment with a dietician and she weighed him. Hubby had lost 4 lbs. Dec 16 he was 198 lbs, today my Hubby is 166 lbs. It's obvious, he looks frail and weak and walks frail and weak.

What prompted this appointment was me asking for a nutritional supplement for Hubby because of his weight loss. Hubby is 100% service connected through the Veterans for his combat time in the Korean War. As such he qualifies for medical care, medical supplies and meds themselves. I felt that the nutritional supplement would benefit Hubby since he has diminished his intake of solid foods in the last 3 or 4 weeks. I felt a liquid would help to keep some nourishment and hydration in him. Apparently this is going to be another one of those fight for "luxuries".

The first luxury we had to fight for was pull up disposable undergarments.
2 attempts to get this style of undergarment were met with resistance and incorrect fulfillment after the agreement from the V.A.
The third attempt was successful after a face to face meeting with the pharmacist and an explanation as to why that particular style was necessary. Yes, I had to give a very good reason for the V.A. to send Hubby the pull up briefs. I informed him that Hubby was still mobile to some degree and the tab type garments were a hindrance to him. He still wanted to maintain some independence and I wanted to maintain his dignity. At this point I took the plastic garment, placed it on the man's desk and told him those would not help with either of those things. Apparently my plea was successful and Hubby started receiving the correct ones.

During the meeting with the dietician she told me that getting liquid supplements would be difficult and the pharmacist would have to approve it. To start with I had to keep a record of everything Hubby ate for 3 weeks, he would need to be weighed again and the pharmacist would have to approve the request with a good explanation. I'm already drafting the plea :) I'll let you know how it goes.
Dietician also gave me some high fat high protein recipes for Hubby. She told me that his last blood workup was good for sugar & cholesterol so there was some "wiggle room" for her to make suggestions.
She suggested I use whole milk, ( I was using 2% for Hubby) instant breakfast, butter, gravy, puddings and custards, sweets, cakes, cheese sauces etc etc.. The more she suggested, the more my stomach growled.
She said serve about 6 meals a day on small plates.
Poor Hubby, having to be subjected to so much food.
But I know he could actually eat more that way, I've been known to eat nearly half a cake throughout the course of a day because I cut tiny bites of it and nibbled on it as I passed by it each time. By the end of the day I wondered what happened to the cake?! Umm forget I mentioned that part :)

I informed Dietician that one of the problems associated with Lewy Body is constipation. I was concerned that Hubby eating that much food and him having mostly no activity would not be helpful. My reason for liquid supplements were to keep some nutrition in Hubby since his appetite has decreased for solid foods yet he still wanted something and I wanted to keep Hubby hydrated to prevent any more body pain than he already has. I also told her that Hubby got anything he wanted when he wanted it, so wiggle room didn't mean anything to me.

So away we were sent with a handfull of papers. I started making a mental grocery list. The longer I made the list the more I realized, this may not work out for me! I'm weak!! I have carb addiction! I want sugar and chocolate to be my friend!  :)
Oh my, I will need lots of prayers for a strong will against temptation.
This seems so unfair ;-)