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.

Tuesday, August 14, 2012

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 ;-)


  1. I agree, It's not fair that the very thing he can benefit from is your greatest temptation--or a great temptation. Sugar is my greatest temptation. So I'm standing with you for strength and power in the Lord. Thank you again for your example of unconditional love. I know the LBD journey and it's no fun. Keep up the great work. The Lord is pleased with your service.

    1. Kathy,

      Thank you for your continued encouragement and prayers.
      they have certainly helped on this journey, and saying "No thank you" hasn't been to difficult of a challenge. Of course buying all the stuff Hubby likes and not what I like has been beneficial ;-)

  2. Dear Kathy,

    You certainly are a concerned and a loving wife. My husband has also lost weight in his stage one Alzheimer's and I am watching how you solve this as my husband goes into stage two. My husband eats about half of meal and then requests ice cream which I do give him. Also, I give him coconut oil fudge which I believe helps him and which is okay according to his doctor who likes hubby's blood work.

    As for me and carbs, at first with the disease I battled emotional eating and gained weight. Now I have lost almost 25 pounds through Weight Watchers this year and have built up more energy for the road ahead. I do not want to have a heart attack myself, because I am the best lovegiver/caregiver for my husband as you are for yours.

    Hugs and prayers,

    1. Hi Carol,

      I have a friend that is on WW and she is doing fabulous!!
      I struggle with emotional eating, I eat without thought, it can be frustrating but since I've paid more attention to me and my own health over the last few months, I can see some positive changes in how I deal with my stress. those changes come in various forms like making sure I don't have an abundance of stuff I particularly like in the house, I increased my water intake and exercise in some way regularly. I, like you, don't want to be a caregiver statistic either. Our loved ones we care for deserve the best care we can offer and taking care of ourselves is part of that :)


  3. My Father has Demntia/Alzheimers/Parkinson's Disease. He eats a good breakfast and then it's a struggle. I give him Boost High Protein Drinks. He likes them and will drink them very willingly but be very careful how many because it makes the feces smell so very horribly strong that I can hardly do what needs to be done without gagging myself. Two shakes a day not a problem ...four or five and OMG it's more than i can bear.

    Anyway He also is cared for By VA..They told me in order for them to approve and provide the drinks for him, He would have to not be able to swallow/eat hisself and would need to have a feeding tube. So if you are ablew to get this approved I would appreciate insight so maybe i can get them for my father.

    Thank you and good luck, Teri

    1. Hi Teri,
      Thank you for commenting.

      Oh dear I don't want to even imagine the job of cleanup after that many High Protein Drinks :P

      As you said might happen, the V.A. did deny my request for the supplements. If a feeding tube for Hubby is what is necessary to get them, then it is not an option we are going to take. I'll buy them myself. Then I can be assured he gets the ones he likes :)

      Please stay in contact and let us know how you're doing :)


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