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Open Discussions with your LO in early Cognitive Impairment
My LO and I were married 25 years ago. She was, and still
is, a vibrant, beautiful, and active woman with almost childlike enthusiasm to
learn new things. LO is a passionate
Christian, a strong conservative, and a woman who never leaves the house
without being meticulously made up and dressed. She was never comfortable with
my spontaneity and was generally reticent with my straight on social
aggressiveness. If we went to a cocktail
party, for example. LO would stay in one place and her magnetic and open smile
would bring people to talk with her.
Me? I floated around the room,
confident that whenever I came back she would be in the same place.
A few years ago I
began to notice that more of her little quirks, like always being late for dinner date or an
event became more serious and more often. Looking back, I now realize
more things that I should have noticed but did not. Two years ago I began to
get concerned. I attributed some of her behavior, in the evenings, to having a
few drinks. I would get annoyed with her and suggested she
not drink so much. We both like to have cocktails together, so this was
difficult. Then in December 2020 LO and I arrived at my brothers for a
pre-Christmas dinner party. Our normal
close friends there and we did have one cocktail while getting ready to come
over but LO never finished hers. When we arrived and were standing
around greeting the few
people that were there we shared some pictures of a recent special event. Five minutes later,
in front of the same people,
after I put the pictures away on my phone LO brought up that we have pictures
of this event and why don’t I take them out and show them? This was a pivotal moment for me.
I realized she was having short-term memory problems.
This began my journey into immersing myself into the various reasons
for memory loss that led me to Dr.
Bedersons book; The End of Alzheimer's: The
First Program to Prevent and Reverse Cognitive Decline .
I began to study and immerse myself in his protocol and the relationship between diet and
lifestyle and it’s relationship to Alzheimer’s. In March 2021 I visited the Apollo
Health Institute run by Dr. Bederson and we
signed up for a full
evaluation for LO. At this point she was not convinced she had a problem but agreed
to follow my lead. LO had a whole battery of tests
done including DNA testing
for APO4 gene (she had it) and a full battery of blood and urine tests as well as a
cognitive evaluation. After the full results and a diagnosis of mild cognitive
impairment (MCI), she was not convinced that she
had a problem and ignored all suggestions to follow a protocol.
The protoocl inclives what I gave come to know as NEURO ( Nutrition, Excecirse, Unwind, Resore,and Optimize). This is from the work and book by Dean and Ayesha Sherzai, The Alzeimers Solution "A breakthrough Programto prevent and Reverse the Symptoms of Cognitive Declone ar Every Age,
found this book recently through Dr. David Perlmutter’s YouTube channel in an interview he did with
the authors. Most of my research has been on the Internet but the first book I
read was by Dr. Bredesen’s two years ago. https://www.amazon.com/End-Alzheimers-Program-Prevent-Cognitive-ebook/dp/B01M28ROCU/ref=sr_1_5?crid=1WCN8DDOU2EMB&keywords=alzheimers+books&qid=1641921274&s=books&sprefix=alzeimers%2Cstripbooks%2C935&sr=1-5
I am very
early in my journey with LO and her cognitive decline has been gradual
over the last year. It has been only
weeks since we have openly discussed her recognition and acceptance of her
condition and I have high hopes that she will now embrace the lifestyle change
protocols. I too am following the protocols, so it is a journey we’re making
LOs condition now
marriage I have almost always done most of the cooking because I enjoy it so much. But LO would
occasionally prepare meals. This is no longer is the
case. I now cook and mostly do the shopping for the pantry. Most things
involving planning and a process are difficult for LO. Things like menus,
grocery shopping, and Christmas present plans are a stress for her.
LO is a meticulous woman with her appearance and dress. In
fact she told me years ago it was impolite to say to a woman how she always
looks nice, because this belittles the amount of effort it took to look that
way. Her personal preparation was always a long process but now it’s a difficult one for her to put on her make
up, choose her
outfits and her shoes, and try not to get distracted by distractions that take her away from the task
at hand. For most of our marriage she paid the bills and organized her calendar,
I had to take over bill
paying about a year ago. I used to joke that if I need to know what day it was I looked in my
vitamin container. LO always prepared our daily medicines and supplements. I
took this over about three months ago. It would take me 20 minutes to do
this monthly, it would take her two hours and cause her stress and
frustration. Today it’s not
possible for her to do. About 10 months ago LO mentioned to me that she could no longer visualize
how to get some place from our home in the town that she’s been living in for
69 years. She said she could get there by actually going but couldn’t think in advance how to do it. She didn’t seem to
relate this to her
cognitive decline. She still drives today and this may become an issue if we
cannot reverse or decline her situation. She uses her Apple iPhone if she gets lost.
cannot do projects anymore. Multitasking will definitely
disorient her. I hesitate to withdraw more household chores from her. But we’ve
had the same cleaning lady for 20 years so this has not been an issue. LO confided in her a few weeks ago. LO still
does laundry, the
best way for her to do it is in small segments. My socks get mismatched, and laundry gets put in various places in the
closet, but these are minor issues for me.
notice items placed an odd locations in our house but again this has not been a
major issue. She often is losing her phone or her purse or some other personal
item but I have gotten accustomed to
looking in some often usual suspect places and
locating them. The locater TILES have been helpful.
She has difficulty remembering a few events from as recent
as one year ago but most of her memory loss is very short term, like how many
tiles to draw for a Romeo game that we’ve been playing for example. In general her long-term memory
is working about the house she can often be seen carrying 2 to 5 unrelated items with her. Her focus
can easily be distracted.
We recently sold our house for eight years and moved into a
new, downsized, home. The stress of moving and trying to acclimate to a new
home seem to accentuate issues. This coupled with the fact that we have two
homes, one a vacation home in North Carolina, also exasperates her routine.
Talking about it
ability to talk openly about her dementia with her is a recent breakthrough. I have not read much about
this in the forums and literature that I have been
consuming. Hence this post today. But almost daily now LO and I have a conversation about how she’s
feeling and what she is able to remember and her frustrations. Three months ago and further back this was not the case. LO
would say her confusion was just because she’s stressed; people have this kind
of issue and she would make excuses. Now she realizes she has an issue.
LO has recently “come out” to a few close friends and
family. This relieves a burden
from me. It has been a
lonely experience keeping and quiet and covering. I have visited some forums and self-help groups online but have not
run into anybody and I can talk to you about this. I can tell you that open discussions have
alleviated a lot of stress for me as well as her.
This post is my first attempt at a journal on the journey to stabilize or
reverse her condition.
LO and I
spent six months straight in our vacation home this year are we in what I call
the Queen‘s nest onto the cottage. I designed this as a haven for LO - a gorgeous bedroom suite where she and I can live inand have guests in the other attached small cottage.
Lately she became more isolated and
socially uncomfortable. She always enjoys yourself when we go out but would
hesitate to accept any invitation. It has always been difficult for LO to prepare for guests to come to
our house and she would stress over that. I didn’t attribute this is the time
to any sign of Cognitive decline but just one of her things that she didn’t like to do.
Impromptu parties were the best because she never stressed over it. I would
cook and prepare drinks and be the host.
Anyway, my question
is, have you had open discussions with your LO and if so how did you initiate
it and how did it go?
Welcome Gregg. This is the place where you will find honest, sometimes raw sharing. We are the frontline people and will share our experiances, solutions, feelings and information with you.
Benderson and Perlmutter....their names come up periodically. My opinion is that what they offer is not harmful but nothing really shows how helpful they are.
To answer your question, no I did not discuss my husbands illness with him. I felt that nothing positive for him would be gained. I always acknowledged that he had let's say a memory problem. I would tell him some of the pistons were getting slower to fire. Had he asked for more I would have answered but I doubt I would have ever told him he had a fatal disease. Other have done differently and will share with you.
I think the best thing for you to do to learn to be the best caregiver you can be. My favorite book is I'm Still Here by Zeisel. I would also read about the author.
Take a deep breath...it's a long journey but you will travel with us by your side if you wish.
I look forward to getting to know you.
I fall into the camp where honestly is the best policy. I find it is better to be transparent with my mother when it comes to nature of Dementia and the progression of the disease. At times it does make her upset that nothing really can be done for the disease itself, and she does at times become extremely discouraged and does express thoughts of not wanting to live. I personally validate what she is feeling and acknowledge the fact that the situation all around sucks for all parties involved.
I do not start the conversations but when my mother does ask about what is going I go with being as honest as possible and tackle the emotions she feels afterwards.
Thanks for your reply.
I have read a few of Perlmutters books as well as Bedersons first. Indeed there is data now from studies that show the protocol works. In fact here is a link of one
This was a study performed by Matthew Philips
The modifcation part of the Keto diet involves less meat, more whole foods and intermittent fasting.
BTW, I am also exploring Hypoctaties Health Insitute. https://hippocratesinst.org/
My LO was diagnosed one year ago so there is a big differneve discusing the MCI issue with my LO and perhaps three years from now. I get it. On the three stage scale I would say she is a mid to high 3.
My LO and I both gained from an open discussion, she now knows that since I know, she no longer has to hide from it. She knows that I know she is sometimes afraid.
She knows we are ini this together and we both feel less alone.
While I am not certain there is a cure, I am certain there is prevention. Now, can I encourage and lead my LO to commit to the protocol? (Diet and excecise and stress relief, and stimulation) IDK, but I will do my best.
So far, so good. No carbs and daily bike rides,
I'll keep the chat room posted.
Im thinking I'm in it early enough. I'm an Optomist, it's the ony way I know how to be. Im also an immersion guy (nice way to say obsesive compulsive) I am soaking up all the intel I can get. Incedently, I'm doing the same protocall
Hi Gregg- you have received lots of good feedback here. Wishing you all the best.
I know you did not ask this, but your detailed observations suggest your LO is beyond mild or early cognitive impairment to me. The biggest concern I see is that she is still driving given the challenges she is having already. Dementia and tons of heavy metal traveling at great speeds is an accident waiting to happen, pun intended. I didn’t realize this early on either, but getting lost is far from the worst that can happen if she continues to drive e.g. you mentioned “Her focus can easily be distracted.”. “LO simply cannot do projects anymore. Multitasking will definitely disorient her.”
(Gregg, these factors and others. plus evidence of her short term memory issues are already huge red flags for driving I’m sorry to say). I do hope you will prepare for the worst (to prevent it), while seeking the best re: stabilizing or slowing your DW’s disease progression with these protocols. The risks of harming herself or someone else are too serious to take chances with at this point.
To your question, my DH has anosognosia...so, no concept that he is impaired in any way. He heard the diagnosis but pretty quickly forgot it. He initially started out cooperating with Drs recos though he didn’t really agree that he was exhibiting any symptoms (although everyone else could see). Within 6 months or so, I’d say, the part of his brain that governs awareness was affected. Today? We can talk about Alzheimer’s and his diagnosis til the cows come home. He doesn’t process that conversation at all. Doesn’t irritate him even. It just does not compute. Like we are talking about someone else. He doesn’t disagree but just sees no relationship to him or his reality and all. I think that is a blessing.
Why insist that a LO focus on their terminal status? I would not want to if it were me. If I wanted to pursue a certain diet or exercise program to potentially help, I would just do it and see if it worked, without belaboring all the reasons why. Might that work for you all?
Good luck to you and yours.
Yes I am working on the issue (Driving) I agree with you.
Im sorry to hear about your DH, it progressed so rapidly! Right now I can have a cogent discussion my DW so no denial of condition. I just dont know if that will come. From other posts elswhere here I understand it is common, just dont know if it is an inevitable part of the desease once it progresses.
You mentioned the three stage model. A seven stage model gives more nuance.
Many of us use the 36 hour day as a reference book.
I’m concerned that you are handling all this from an intellectual/clinical point of view. The down and dirty parts of being a caregiver to a spouse with dementia are both physical and emotional. You’ve described a life and marriage focused on being equal professionals and a wife very focused on traditional appearances, . It’s going to be very hard for you when your spouse needs help dressing, toileting, forgets who you are, becomes afraid of you and so forth.
MCI does not always progress into dementia. However, at the end of 5 years post MCI diagnosis about 50 percent of patients have progressed. Regardless of protocols, medications. Exercise, mental exercises etc. Please don’t get mad at your wife if she can’t follow them.
Therefore, I’m really glad you have found this forum at this stage of your journey. We are all here for you and it’s a safe place to vent and be honest.
Quilting Brings Calm.
I believe I do understand, but perhaps not. I grew up with a severly retarded sister, however,so I do have some idea.. We also had one parent pass with Dementia
I did describe our marriage rather idyllic. Didn't you all start with a normal marriage and relationship?
Thank you for pointing out where this will be goiing. Don't think I have not thought of this and shed many a tear.
I have heard mostly the two extremes from family and friends
1. "Oh every one has trouble losing/remembering/managing things.".. or
2. "There is nothing you can do, learn how to take care of her."
I choose to fight. There is something I can do and I will not wait for things to get worse before I start. It took 20 years to develop this brain plaque, Pretty hard to reverse it in a few years, I understand that. I may be too late, but maybe we can slow it down, flatten it, or reverse it.
One post said there was not data top support the Appolo Health or the Keto protocall. This is flat out wrong.
In the worst case, I will follow the same protocal so I will be healthier and better able to continue to care for her.
Gregg- thanks for giving us more information. Your last comment lets us know this isn’t as foreign to you as I thought. I hope everything you are doing does help, all of us would prefer our loved ones plateau and stay that way.
I’ve gone back to read all the posts I could find on this forum regarding the protocols that involve Bredeson , Perlmutter, Appolo health, or recode. I understand the cynical responses.
My DW was in the recode program. She never thought she had mci so was not willing to follow it. We were never offered and certainly not pushed supplements to buy or other extras. There are a number of studies about Keto, Fasting, and sleep restoration that corroborate Bredesons concept. Apollo Heath (Bredeson) gave us our money back and we didn’t even ask.
Perlmutters YouTube channel is worth looking through for pertinent info.
The earlier you address the brain function problems the more success .
cannot do projects anymore. Multitasking will definitely
Welcome, Gregg. Not being able to do projects is loss of executive function. It will help you to learn about the seven A's of Alzheimer's Disease and anticipate them. Read about instrumental ADLs.
What Dr. Bredesen and the other docs wrote about are what we patients call Best Practices. We engage in these practices to improve functioning and to prolong the early stages, emphasis on early stages. In my case, I believe Best Practices worked for several years. Note, I do not have Alzheimer's Disease, my diagnosis remains cognitive impairment not otherwise specified.
Please, do not stress your dear wife by constantly obsessing about her losses and lapses. One of the best advice I received from Mimi S, one of our emeritus members, is to focus on what we still CAN do, not on what we can no longer do. Now might be a good time for bucket list travel or other project, keeping in mind Covid precautions. Best Practices allowed me to travel to Israel, Europe, China, and several other overseas areas. I also went on the Alzheimer's Cruise and met several patients and their families.
Dementia is terminal. Get legal and financial affairs in order, discuss wishes and then enjoy your time together. This is my advice. Join the others on the Spouse/Partner board. Read a lot of threads. Best wishes to you both.
Thank you so much. I appreciate you.
This is wonderful advice.
Thanks Iris- your great advice sent me off to find more info on the 7As and I like the linked article below. This is a helpful explanation I had not run across yet. Will share in the Spouses & Caregiver forum as well.
How fortunate your wife is to have your care.
Usual is gone. What a shock this is to us.
Because of the nature of the disease, the day will come when conversation along rational, learning lines will be gone. You will start to feel frustrated - and key here is to take a big breath, and spend several days thinking about benefit. At some point, the conversations will satisfy your need to be rational and think things through - but it will tilt in a very negative way for your wife turning it into a stressful event when she can no longer process, retain, learn or most importantly process the conversation.
At some point, often way earlier than we realize -
The best answer is the one that brings the most comfort.
This is extremely difficult for all, more difficult for some, because it flies in the face of rational, clinical processes.
At some point, we become the guardian, the pseudo parent. And it's terribly painful to let the typical spousal or parental relationship of sharing in everything go.
Just a caution, because we cannot see the forest for the trees at stressful points in the disease.
Don't loose the enjoyments of the now in the long list of shoulds.
Hi Gregg - it is pretty neat that she has you on her side to help fight 'for' her, and so willing. you can fight 'with' her, only up to a point, as has already been discussed.
about the open discussion - With mom we can talk about it, as she is in the 30% that know of the issues she is facing. It appears that this is where DW is - at least for now, which is good. mom-in-law we cannot, as she is in the 70% with anosognosia (it is not denial, but totally unaware that there is any issue at all).
as for the driving - Mom took herself off the road (this is highly unusual! but was a blessing). DH is mechanic and was able to disable the car of MIL. Although someone was with MIL anyway to keep her from driving, she would still want to. We told her neighbors 'car cannot be fixed - so don't!'... after a while, she got used to not driving. Just throwing that out there as this is what worked for us. We knew she had gotten lost once - found out it was twice. but what clinched it was when she told us she came to an intersection and forgot what to do. ok, done with driving. But ultimately - please don't let it come to that, or worse, as has been said, an accident.
and HarshedB, so sorry to hear all of that went down. glad it worked out, but can't imagine how frazzled it had to be for you.
Welcome, Gregg. My husband was diagnosed with Alzheimer Disease in 2015. Just before that, the neurologist told us DH had Mild Cognitive Impairment, likely to become AD. Alzheimer Disease is exactly what happened. To answer your question, my husband never accepted or understood that anything was wrong. It’s called anasognosia. He still cannot understand or accept his diagnosis. Even if he had been open to discussion about it years ago, he would have forgotten all of it. Anything that has occurred during the last several years is totally unretrievable. His broken brain recalls less and less. He can only remember events of 30+ years ago. At night it’s worse, 40+ years ago. Anything “more recent” is gone.
In the earlier stages, we caregivers want to find something to give us hope. Maybe the diagnosis is wrong. Maybe my spouse will be in the 5% who do not go from MCI to Alzheimer. Perhaps there is a researcher who knows something that hasn’t been broadly accepted by the scientific community but can do my partner some good. We want to keep our LO as we knew him/her, the person we loved, the person who loved us. I use the past tense because as time passes that person changes. We may still love each other but not as we used to. We grieve the loss of the person who was.
Gregg, please take care. Try not to lose yourself in pursuing what may not be retrievable. Learn as much as you can about dementia. Come here with whatever thoughts are on your mind. We’re here to help each other.
Gregg, you and I are fortunate in that our wives are aware of their condition. Most (about 70%) AD sufferers do not.
My wife saw her physician when she could no longer do her job and received a diagnosis and an explanation of what she could expect. She came home to tell me about it, including a warning of possible personality changes. Five years later, she calls it "losing my marbles" and we are both accustomed to the need to make a series of adjustments in our lives. She trusts me to take care of her and thanks me for it.
What this underscore is the truism that when you know one PWD, you know one PWD.
Thank you for all the
supportive comments. Some great advice.
Some comments and clarifications:
I don’t know how to not be an optimist, IMHO it’s
the only way
My DW was diagnosed with MCI, 2/2021, no further
diagnosis yet., we are continuing our medical journey
She is 70. I am 68
I am committed to being her caregiver advocate, and cheer
leader, I was not retired until this summer when I found my new mission.
I am an immersion guy, this is my polite way of
saying obsessive compulsive (-: . When I’m into something, I’m really in.
Paris20, you mentioned that us caregivers want
to find something to give us hope. Thank goodness for that. Can you imagine
zero hope? Unfortunately many of us here
can imagine it, things have progressed enough with your LO that Hope has to be
shifted to resolution and how to make
your LO as comfortable and happy as possible. Hopium evolves into a plan.
We are in a fast moving world; technology and
medicine are evolving very quickly. The reversal of cognitive impairment has
been demonstrated and it has been both ignored
as well embraced. I am working along with my DW in the protocal so I will be more healthy to care for her.
There, that makes me an Optomistic Realist.
Stuck in The Middle, it was a pleasure to read
your post, my DW and I are talking about things, I am very aware of her fear and I am learning ways to handle that. So is she, to a different extent.
There are a zillion Youtubes out there about dealing with caregiving, Dementia, Diet, exercise,
you name it; also many books., some
with conflicting advice. (Vegan vs Keto for example.) But there is no argument about diet, exercise,
sleep, and stress all play a part and can help delay.
I believe that sometime “set backs” are “set ups”. Right now I am setting up.
I appreciate all your comments and insites. Stuck in the
middle said it in his post: when you know one PWD, you know one PWD.
One of the things you mentioned, I think in your first post is that your wife is not as interested in social activities. As others have said, dementia is about so much more than forgetting.
My sister with dementia can be easily overwhelmed in a conversation with others because she can’t easily process what they are saying. It’s almost like you are trying to listen to someone with static on the radio next to your ear. Here are a few examples: 1. Wrong prescription for eyeglasses. When the Opthalmalogist started with her “which lens is better, 1 or 2; 2 or 3, etc.” my sister actually wound up with a bad script for eyeglasses because the doctor was going to fast for her to process which lens was best. We went to another Opthalmologist and emphasized he had to go slow during this process.
There are also days when I’ll be talking to her and she’ll say: “Only tell me what I need to know; I can’t process more.” She moved to my location (PA) from Virginia and I though she would be able to use Waze or another GPS to drive around here. However, it takes her too long to process what the Waze person is saying in order for her to have quick enough reaction time to follow the direction. We live in the same retirement community, so I drive her wherever she needs to go. She wisely realized that her slow processing time while driving was a recipe for disaster and stopped driving.
Another example, we were at the vet for her cat and the vet started spouting off all the medicines and directions for treating the cat. My sister, who is, thankfully, asserting herself, said, “Wait, you must go much slower, I have dementia and can’t absorb all this. Can you please type up the instructions for me?” Even when the vet did so and handed the typed instructions to my sister, I immediately saw she was overwhelmed by all the words on the page. She told me she would have to go home, read it several times, study it, and then absorb it. However, whether she would remember it the next day was anyone’s guess so I made a short version for her that was easy to follow.
I also try to let her have wins whenever possible. For example, when she says something she thinks happened that didn’t, I don’t correct her unless it’s really consequential. Although I’m a very take charge person, I try to stop and think if she can do something on her own instead of doing it for her. For example, calling the vet to make an appointment. Small thing but it helps her confidence.
So far, I am very fortunate because she just lives with the attitude: “It is what it is.” She is in her own independent living apartment but we have turned off the circuit breaker to the stove and bought her an automatic shutoff tea pot to keep things safe. We are learning tips and tricks together. For example, she knows now not to put certain things away unless I am in the apartment with her because she’ll never remember where she put them. After she opens her mail, she just leaves all her paperwork in a pile for me since I set up almost everything on auto pay and auto deposit so she knows she rarely has to write any checks. It’s not foolproof, but we’re working together on ways to avoid problems. Of course, I know things could go downhill anytime.
We live in a very big retirement community (1200 residents). There are two large clubhouses that each support about six resident buildings. However, all are connected inside. She is in a building supported by the other clubhouse. After living here six months, last week she told me it was the first time she made it to my apartment without having to ask someone how to get to my building. We celebrated, even though it’s also sad. However, she feels very safe here since there’s always another resident or staff member to point the way.
Just though I’d share some things about interactions with people, but as you said, one PWD is just one PWD
Judy, everything you are doing with your sister sounds wonderful! You are achieving the right balance of assistance and standing back. I like the sound of your IL community. I sent you an invitation for connection.
Gregg, your wife might benefit from Exelon patch and Namenda. They might help her function better. They are helping me.
Judy, Thanks so much for your comments. "I also try to let her have wins whenever possible" is smething I try but dont always do well at. Last night she was watching Mad Men, she told me she watched this show when she first married her first husband (The time period of the show is the 60's) this is the second time this has happened to her, she confused the time period of the show for when it was broadcast. The first time it happened, I corrected her.. This time I let it go.... "yup it's a series thas been around a long time".
I will add this was a day that was very good for her, My son and his wife came for dinner, she told them about her MCI, She was very open about it.
Iris thanks for the reference.