Trying the protocol in advanced alzheimers

Newcomer introductions, personal anecdotes, caregiver issues, lab results, and n=1 experimentation.
chrystina3
Contributor
Contributor
Posts: 5
Joined: Wed Dec 13, 2017 6:16 am

Trying the protocol in advanced alzheimers

Postby chrystina3 » Wed May 02, 2018 12:13 pm

Hi all. I did the Bredesen training in December and could not stop thinking about trying it on my mom, who is 95 and pretty advanced in her dementia, which I believe is a type III Alzheimer's. I am a physician (internist). The thought of trying the protocol with her just did not leave me even though it was not the rational thing to do, considering her age and stage of dementia. At first I tried to initiate 3-4 supplements while she was in her care home but they were less than enthusiastic and ultimately stopped giving them to her. So I arranged to take time off work to have her here at my home and do the protocol. It's been about 3 weeks and I am struggling to get the supplements in her. I make her a shake every morning with 1/2 dose of the supplements--it's in powder form for the most part and comes to about 1/2 cup of powder, which is why I can only do 1/2 dose, then I add the vitamin E, DHA/EPA, etc that is not in powder form. She should have a second shake in the afternoon/evening for her second "dose" but she can never tolerate it/keep it down, though she does fine with it in the AM. I am considering possibly trying a smaller shake with 1/4 of the dose of supplements, four times a day...maybe she would tolerate that better, but it would likely leave little room for other food so I will need to include real food in the shake like nuts, vegetables, etc...

I have seen improvement in my mom in terms of her ability to process what we're doing--I explain and show her that we are going to go from the bed to the wheelchair and I can see that she slowly begins to understand, and will cooperate and try to stand up etc. Transfers were a big problem but we have made great strides in that, along with her walking, but that is probably due to my working with her one-on-one consistently. I think I also see improvement in her communication--she is aphasic but makes sounds, and in the last week I feel she is responding more specifically with the sounds she makes---hard to explain, but I see a difference. She was becoming combative and agitated at the care home and I have seen almost none of that, but I am sure that is because she knows me and my home (she lived with me for four years when her condition was early to moderate). We actually have not even done the labs yet due to the difficulty of getting them done in her condition, but we are going to try next week.

In terms of her Alzheimer's, it began with aphasia--she slowly lost her ability to speak. At the time, she conveyed to me that she was sure it was due to a glue she used in her volunteer work with the church. She was in charge of keeping the books in good repair and apparently used a smelly glue of some kind. She felt it affected her brain. For several years she was still sharp and able to drive, cook, clean, handle her finances while her speech slipped away (and writing ability) but then about 5 or 6 years into it she began to have more typical Alzheimer's dementia.

I would like suggestions on masking the flavor of all the supplements in the shake or other advice about getting supplements in. She has difficulty eating/chewing/swallowing so the shake is really the only way to do it.

Thanks for listening!
Chrystina

Jafa
Senior Contributor
Senior Contributor
Posts: 188
Joined: Fri Dec 16, 2016 12:46 am

Re: Trying the protocol in advanced alzheimers

Postby Jafa » Wed May 02, 2018 1:06 pm

Mint or cinnamon, melted dark chocolate, maybe a little stevia to sweeten. Good luck.

User avatar
CarrieS
Support Team
Support Team
Posts: 391
Joined: Thu Jun 22, 2017 12:21 pm

Re: Trying the protocol in advanced alzheimers

Postby CarrieS » Wed May 02, 2018 1:19 pm

Hello Chrystina! I am so impressed with your commitment and perseverance with your mother and her care. My mother died 8 years ago in a very advanced stage of AD. If I knew then what I know now, I would like to think that I'd be following in your footsteps. Seeing improvements (no matter how small) are indeed a joyful experience! It certainly sounds like a good option to try breaking the shakes into 4 a day with smaller amounts of the supplements to see how Mom tolerates them. Adding nut butters, fats and vegetables also sounds like a good option to try (the variety of tastes could be a nice change for her too). My mother also had difficulty swallowing so we had to go very slow or she would aspirate the food and cough until she threw up. Thicker seemed to work better but that was also hit and miss. Interesting that she had an intuition on what could be affecting her cognition. I believe that our bodies know what is making them sick. You could try a quick search using the "spyglass" icon (located to the left of your name) and use a keyword such as "vomiting" or "nausea" to see if there are some previous threads that may have a similar experience. Hugs to You! Your Mom is so fortunate to have such a loving and caring daughter!
APOe4/4
Functional Medicine Certified Health Coach
National Board Certified Health & Wellness Coach
Certificate for Reversing Cognitive Decline for Coaches (FMCA)
Certified Fermentationist

User avatar
slacker
Mod
Mod
Posts: 1916
Joined: Wed Aug 03, 2016 6:20 pm
Location: Kentucky

Re: Trying the protocol in advanced alzheimers

Postby slacker » Wed May 02, 2018 3:16 pm

What a blessing for your mother, Chrystina, to have you involved in her care, and doing so in your home which is familiar to her.

I heard from a spouse supporting his wife through the Bredesen protocol that using real food with the supplements in the shake was very helpful. He put in a lot of leafy vegetables, commenting on how long it took to chop and prepare. I don't recall what form of fat he added - possibly avocado and/or coconut milk. Because of the extended prep time, he experimented with making a larger batch to see how long it would last in the fridge - 3 days was the max. Anecdotal! But still helpful I think.

We all look forward to learning with you.
Slacker
E4/E4

User avatar
TheBrain
Senior Contributor
Senior Contributor
Posts: 1311
Joined: Fri Oct 03, 2014 12:12 pm

Re: Trying the protocol in advanced alzheimers

Postby TheBrain » Wed May 02, 2018 3:26 pm

I'll add a quick tip: I've been making a big smoothie batch and freezing portions. That keeps the smoothie ingredients fresh and ultimately takes me less time. Of course, you have to allow enough time for portions to unfreeze in time for consumption.

Best of luck, Chrystina! You are an awesome daughter!
ApoE 4/4 - When I was in 7th grade, my fellow students in history class called me "The Brain" because I had such a memory for detail. I excelled at memorization and aced tests. This childhood memory helps me cope!

rrmolo
Contributor
Contributor
Posts: 47
Joined: Fri Sep 01, 2017 1:08 pm
Location: Brookfield
Contact:

Re: Trying the protocol in advanced alzheimers

Postby rrmolo » Wed May 02, 2018 5:48 pm

Supplements may play a role but I would guess your mother is responding to your love. I wouldn't put too much emphasis on the supplements at this time. Does she respond to music? Can she watch the birds outside? What are her quality of life moments? Looking at old photos? Hopefully you both take time for these precious memories. I do recall after my father died from dementia I really missed caring for him. Looking back those times were challenging but also very special.

marthaNH
Contributor
Contributor
Posts: 554
Joined: Thu Dec 18, 2014 12:47 pm

Re: Trying the protocol in advanced alzheimers

Postby marthaNH » Wed May 02, 2018 6:56 pm

chrystina3 wrote:I have seen improvement in my mom in terms of her ability to process what we're doing--I explain and show her that we are going to go from the bed to the wheelchair and I can see that she slowly begins to understand, and will cooperate and try to stand up etc. I think I also see improvement in her communication--she is aphasic but makes sounds, and in the last week I feel she is responding more specifically with the sounds she makes---hard to explain, but I see a difference.

I would like suggestions on masking the flavor of all the supplements in the shake or other advice about getting supplements in. She has difficulty eating/chewing/swallowing so the shake is really the only way to do it.

Thanks for listening!
Chrystina


I have had good luck using powdered cinnamon to mask unpleasant tastes in smoothies.

Your description of your mother's communication reminded me of some of the happier times with my dad after he lost his speech. He was sociable at times, and I could always tell when he was telling a joke from his inflection and gestures. Once I had a laptop with me and he loved it, made "I'm interested" sounds.

One of the sweetest things I have ever experienced has been the ability to actually help someone I loved who was in distress. I wish you all the sweetness there is to be had and the very, very best for your mother.

chrystina3
Contributor
Contributor
Posts: 5
Joined: Wed Dec 13, 2017 6:16 am

Re: Trying the protocol in advanced alzheimers

Postby chrystina3 » Wed May 02, 2018 9:17 pm

rrmolo wrote:Supplements may play a role but I would guess your mother is responding to your love. I wouldn't put too much emphasis on the supplements at this time. Does she respond to music? Can she watch the birds outside? What are her quality of life moments? Looking at old photos? Hopefully you both take time for these precious memories. I do recall after my father died from dementia I really missed caring for him. Looking back those times were challenging but also very special.



I so agree...We do all of that. You're absolutely right.

chrystina3
Contributor
Contributor
Posts: 5
Joined: Wed Dec 13, 2017 6:16 am

Re: Trying the protocol in advanced alzheimers

Postby chrystina3 » Wed May 02, 2018 9:19 pm

Thank you all for your comments. It's very encouraging. I will update as I can.

Banch
Contributor
Contributor
Posts: 4
Joined: Wed Mar 28, 2018 9:55 pm

Re: Trying the protocol in advanced alzheimers

Postby Banch » Wed May 02, 2018 11:59 pm

Am very touched by this post. I have also heard that Physcians Elemental Diet is a powder filled with quickly absorbed nutrients that some claim is surprisingly tasty through some special process. Perhaps whatever it has to mask the taste is powerful enough to mask the taste of additional supplements. I have heard that drinking shakes chilled or with well-blended ice also lessens any bad taste and makes it more like a shake. My mother also had some swallowing issues, but I was still able to reduce the volume of her shakes by mixing some supplements in cooked oatmeal (resistant starch, omegas) with cinnamon, or in mashed avocado/guacamole (MUFA), that had a very soft consistency, some fats to help absorb any fat soluble vitamins, but still hung together so were easily swallowed and digested. I understand from your post this may not be an option for you. I also found that some specific food/supplement combinations were less objectionable than others, though likely none of them great tasting - such that most combinations were not as bad, even if one was still difficult. Just another strategy when I was grateful for every swallow or spoonful she consumed. To further encourage her, I would also sometimes have her ingest something to get it out of the way before doing something joyful or calming, like getting a foot massage, having bath, or listening to music and always ate or imbibed some of whatever it was with her, to simultaneously share the unpleasantness of it all, though with a smile. Every new angle or strategy is its own act of love. I believe you will find what works.


Return to “Our Stories”

Who is online

Users browsing this forum: No registered users and 7 guests