New member needing support

[HBBApoe]

Hello. Ben here. I am new to this site, would like to introduce myself, and get some suggestions from members. I could use some moral support, too, as it feels like I am fighting the medical profession and pretty much everyone else.

Short version:
I am currently caring for my wife, Carole, 73 years old, diagnosed with dementia/Alzheimer’s (serious issues for the past year). We live the South Hills of Pittsburgh PA. I am a strong believer in the body’s ability to heal itself, and try to do what I can to promote general health (diet, lifestyle, etc.). I try to stay away from medications as I believe they address symptoms, but ignore causes and likely have negative, long-term effects. However, we are being pushed from all sides—doctors, family, friends, even my therapist—to take the medications prescribed by the neurologist (needed to prescribe also Carole’s seizure medication). Everyone is adamant the Alzheimer’s is irreversible, and recommends just using whatever drugs will make the person more manageable. I fear getting into an escalating regimen of medications which seems to be the norm, and feel like it’s me against the world.

The neurologist seems pretty insensitive to *my* wishes, and intent on carrying out the standard protocol (donepizel and mamentine). I have not been able to talk directly to him, but only to his nurse who conveys messages such as "he wants you to continue with the medications." I feel that he has no interest or hope that her condition can be helped, and will not be supportive of anything unconventional. I would really like to find an MD who is interested in minimizing medications, and has some hope that more natural approaches can help.

Carole denies that she has cognitive problems, and resists any efforts to help her. This makes it difficult to implement dietary improvements, exercise programs, physical therapy, blood tests, doctors’ visits, etc. She has not been tested for the ApoE4 allele.

Am I kidding myself that my more natural approach is worthwhile? Am I worrying too much about negative effects of medications? Where can I find moral support, other than people telling me to take care of myself? I sometimes attend an Alzheimer's support group, but this is all about managing the person and symptoms, not about trying to actually help the person.

Thanks, Ben

Longer version:
I am currently caring for my wife, Carole, 73 years old, diagnosed with dementia/Alzheimer’s. The past year has been difficult, as she has delusions of cats in the house (we have one), and is obsessive about finding our real cat as well as the imaginary ones. She mistakes me for different people—her dad (now deceased), a childhood friend, a college friend, etc—which makes life complicated. She denies that she has any problem, which makes getting her to the doctor or any testing difficult. She has not been tested for the ApoE4 allele.

I’ve read about the Bredesen Protocol, and strongly believe in doing the basics to keep Carole as healthy as I can and minimize cognitive decline. (She refused to see a Bredesen trained doctor in Pittsburgh.) We eat a plant-based diet with good fats (flax seed, avocado, a little fish…) and minimal refined sugar and processed foods. She does a *little* exercise (a pedal exerciser), but not as much as I’d like due to knee problems. Sleep is OK, although she’s often up worrying about cats at night. We’ve been on this routine for the past 6 months or so. I cannot say that I’ve seen any improvement in her general health, and she’s not losing weight as I would hope on a pretty clean diet. (She weighs about 190#, 65” tall.) We went to a naturopath who prescribed a bunch of supplements, but Carole is unwilling to take all the pills, and sneaking them into food is tedious, so I’ve stopped that.

A major source of stress for me is dealing with doctors and medications. Carole has been on anti-seizure medications for ~30 years (Dilantin and phenobarbital). The neurologist suggested the phenobarbital might cause cognitive problems, and might be reduced or replaced by something else. However, he first prescribed donepizel (10mg/day) and memantine (working up to 28mg/day, now at 28mg/day). I cannot detect whether these are helping (memory, mood), but am willing to follow the plan to the full 28mg and see what happens. I suspect his intent is to keep her on these medications “forever” regardless of how they seem to be working—that seems to be the default approach for MDs. I worry about how to get off these medications, if they prove ineffective.

I feel as if I’m working against the whole world. Everyone is concerned with managing the patient and symptoms (and costs), and has no thought of trying to improve health. I have great fear of the “health care” system that focuses on disease management and ignores health. Focus has been diverted to how to minimize the financial burden and deal with legal matters. Everything in the US seems to be a game where we spend all our time just understanding how to navigate the system. Enough rambling.

[broiler_x]

Welcome Ben!

I think the "natural approach" is a great way to go, and given that there is no clinically proven drug that will do anything besides temporarily mask symptoms, it's really the only way to go. And this is coming from a molecular biologist who has been involved in drug discovery for 20+ years (including Alzheimer's research). Exercise, good diet (natural foods and low carbs) and good sleep are key. More and more, exercise seems to be very crucial.

[GLS18]

Hello. Ben here. I am new to this site, would like to introduce myself, and get some suggestions from members. I could use some moral support, too, as it feels like I am fighting the medical profession and pretty much everyone else.

Short version:
I am currently caring for my wife, Carole, 73 years old, diagnosed with dementia/Alzheimer’s (serious issues for the past year). We live the South Hills of Pittsburgh PA. I am a strong believer in the body’s ability to heal itself, and try to do what I can to promote general health (diet, lifestyle, etc.). I try to stay away from medications as I believe they address symptoms, but ignore causes and likely have negative, long-term effects. However, we are being pushed from all sides—doctors, family, friends, even my therapist—to take the medications prescribed by the neurologist (needed to prescribe also Carole’s seizure medication). Everyone is adamant the Alzheimer’s is irreversible, and recommends just using whatever drugs will make the person more manageable. I fear getting into an escalating regimen of medications which seems to be the norm, and feel like it’s me against the world.

The neurologist seems pretty insensitive to *my* wishes, and intent on carrying out the standard protocol (donepizel and mamentine). I have not been able to talk directly to him, but only to his nurse who conveys messages such as "he wants you to continue with the medications." I feel that he has no interest or hope that her condition can be helped, and will not be supportive of anything unconventional. I would really like to find an MD who is interested in minimizing medications, and has some hope that more natural approaches can help.

Carole denies that she has cognitive problems, and resists any efforts to help her. This makes it difficult to implement dietary improvements, exercise programs, physical therapy, blood tests, doctors’ visits, etc. She has not been tested for the ApoE4 allele.

Am I kidding myself that my more natural approach is worthwhile? Am I worrying too much about negative effects of medications? Where can I find moral support, other than people telling me to take care of myself? I sometimes attend an Alzheimer's support group, but this is all about managing the person and symptoms, not about trying to actually help the person.

Thanks, Ben

Longer version:
I am currently caring for my wife, Carole, 73 years old, diagnosed with dementia/Alzheimer’s. The past year has been difficult, as she has delusions of cats in the house (we have one), and is obsessive about finding our real cat as well as the imaginary ones. She mistakes me for different people—her dad (now deceased), a childhood friend, a college friend, etc—which makes life complicated. She denies that she has any problem, which makes getting her to the doctor or any testing difficult. She has not been tested for the ApoE4 allele.

I’ve read about the Bredesen Protocol, and strongly believe in doing the basics to keep Carole as healthy as I can and minimize cognitive decline. (She refused to see a Bredesen trained doctor in Pittsburgh.) We eat a plant-based diet with good fats (flax seed, avocado, a little fish…) and minimal refined sugar and processed foods. She does a *little* exercise (a pedal exerciser), but not as much as I’d like due to knee problems. Sleep is OK, although she’s often up worrying about cats at night. We’ve been on this routine for the past 6 months or so. I cannot say that I’ve seen any improvement in her general health, and she’s not losing weight as I would hope on a pretty clean diet. (She weighs about 190#, 65” tall.) We went to a naturopath who prescribed a bunch of supplements, but Carole is unwilling to take all the pills, and sneaking them into food is tedious, so I’ve stopped that.

A major source of stress for me is dealing with doctors and medications. Carole has been on anti-seizure medications for ~30 years (Dilantin and phenobarbital). The neurologist suggested the phenobarbital might cause cognitive problems, and might be reduced or replaced by something else. However, he first prescribed donepizel (10mg/day) and memantine (working up to 28mg/day, now at 28mg/day). I cannot detect whether these are helping (memory, mood), but am willing to follow the plan to the full 28mg and see what happens. I suspect his intent is to keep her on these medications “forever” regardless of how they seem to be working—that seems to be the default approach for MDs. I worry about how to get off these medications, if they prove ineffective.

I feel as if I’m working against the whole world. Everyone is concerned with managing the patient and symptoms (and costs), and has no thought of trying to improve health. I have great fear of the “health care” system that focuses on disease management and ignores health. Focus has been diverted to how to minimize the financial burden and deal with legal matters. Everything in the US seems to be a game where we spend all our time just understanding how to navigate the system. Enough rambling.

Hi Ben & A Very Warm Welcome To Our Community!

Your perseverance and dedication to improving your wife’s cognitive and overall health amidst all of the resistance and challenges that have arisen is incredible! She is fortunate to have your love and support. It is especially tough for caregivers when loved ones are not ready to admit that they are dealing with cognitive decline. Many of the members on our site can relate to feeling like it is “me against the world” at some point. I hear your frustration regarding the way in which many conventional medicine practitioners treat cognitive decline. We have all been there and like you, driven to find another way. By joining our site, you now have an entire community behind you to share in your successes, support you through the difficulties and offer knowledge, science and research to fortify your understanding of cognitive health.

Ben, you are on the right track by exploring how lifestyle factors such as diet, exercise and sleep may be impacting your wife’s cognitive health. You referred to the Bredesen Protocol and I’m wondering if you read Dr. Bredesen’s book, The End Of Alzheimer’s. It provides a comprehensive plan and on page 167, there is a summary of tests for the Recode Protocol. As your wife is not ready to visit a Bredesen trained doctor, what are your thoughts on completing lab work independently? Here is a link to Direct To Consumer Lab Options and the ApoE4.info Wiki has a section on checking your APOE status, as well as one for lab tests and biomarkers. By understanding your wife's unique profile, a plan best suited to her needs can be created. There is a wealth of resources on this site to empower and enlighten. The Primer, beautifully compiled by Stavia, a physician and fellow E4/E4, is a brilliant roadmap to gleaning all you can about the APOE gene. The How To Get The Most Out Of The ApoE4.Info Website is a step by step guide to navigating the site more effectively and accessing topics most relevant to you.

Perhaps if you take it one step at a time with your wife, she may be more willing to explore options. I know it is tough, however you can only go as far as your wife is comfortable. Additionally, to be at your best and provide support, your self-care is crucial. What is one thing that you can do for yourself this week to ease your stress?

Please keep us posted and let us know if you have questions or could use some support. We look forward to your continued contributions.

Wishing you and your wife all the best! Again, a warm welcome:)

[slacker]

Welcome Ben.

I'm sorry to hear about your struggle navigating through our current medical system. It doesn't seem right that the neurologist isn't willing to discuss your preferences. (Do you have a medial power of attorney?) A change in your wife's seizure meds might be very helpful, but certainly should not be held hostage to continuing the AD meds. As you know, the AD meds at best give a small short term improvement, and possibly a slower decline. There are more and more doctors who are open to the possibility of preventing or reducing the risk of AD, but not very many that support the idea of improvement through other methods once the cognitive loss has occurred.

Would it be possible to convince your wife's PCP to "manage" her AD and have the neurologist just focus on her seizure meds? The PCP may be more sympathetic to your point of view. I would like to point out that Dr Bredesen does not recommend stopping the AD meds "cold turkey", but slowly weaning off due to the risk of a rapid decline. (End of Alzheimer's, pg 241-242)

And then there is the reality that your wife has not shown any interest in making many changes. She may be struggling to maintain some level of autonomy. I agree with Gina that there are ways of taking things slowly, in a step wise fashion, that might be more comfortable for your wife. Even those of us implementing changes for prevention are easily overwhelmed with all the steps, and expense. And Dr Bredesen also encourages phasing in changes.

We are here together to support each other on our individual journeys.

[NF52]

Hello. Ben here. I am new to this site, would like to introduce myself, and get some suggestions from members. I could use some moral support, too, as it feels like I am fighting the medical profession and pretty much everyone else... Thanks, Ben

Welcome, Ben,

Please let me say first that if we can offer you nothing else, we want to offer you moral support. While prevention of cognitive issues is one important goal; an equally important one is having conversations about times like this: when it feels every day like you (and Carole) are battling against the world--even friends and family--in uncharted waters.

To help sort my own thoughts, as someone who could be Carole's 66 year old sister, with the ApoE 4/4 genetic risk and a strong maternal family history of dementia, I took the liberty of sorting your thoughts into three categories: 1) Current Status; 2) Strengths to build on; 3) Meaningful goals and primary concerns. It's an old habit, from years of working with kids and families with complex post-traumatic brain injury (TBI) issues. One of the things you learn from any brain injury is "each one is different: if you've met one person with a TBI; you can't say you understand TBI." The same is all too true of Alzheimer's. And yet, I always felt that working with families, it was possible to arrive at some do-able goals, some important changes to make life better; some reason that hope is, as one parent told me "a good state to live in."

This is how I "hear" what you're saying, and maybe feeling and what seems like do-able next steps. (With people with TBI, we try not to focus on what will happen in 6, 12 or 18 months, because it's so hard to predict, but instead look at what to do in the next few weeks or couple of months. It's also MUCH easier to feel you've accomplished something with short-term, measurable goals.

Current Status/ Pressing Issues:
My take-away: : Carole has changed quite a bit in the last year; so much so that it's hard to see the "real" Carol day-to-day, or to think about what her favorite activities and interests used to be. She's sometimes confused; sometimes agitated and mostly unaware of her current difficulties and resistant to any big changes.

Possible Short-Term Steps: Carole can be met "in the moment" when she thinks you are someone else, or that there are cats in the house. Responses to validate her beliefs such as "Oh the cats are sleeping; you don't want to wake them up, so you can go back to sleep too" or "It's good to see you Carol; it's been a long time (if she thinks you are someone else); how are you feeling today?" may help reduce her confusion. My mother-in-law regularly asked her beloved youngest son "How is your mother doing?" to which he gently replied, "She's doing just great; how are you doing?" He focused on the love she expressed; and not on the sorrow of her sometimes not recognizing him. She also worried about former cats, and did well when she was given a few stuffed animals to sleep with and cuddle.

Strengths to Build on:
My take-away: Ben, you are a loving and concerned husband and now care partner, who is providing for Carole's safety, health, and daily needs, and ensuring that she is safe when she's upset. You would greatly like to do more to help her health and cognition improve. Carol has done well for 30 years on seizure medication, so may respond favorably, or at least with no ill effects, from the new medications. The doctor's offer to switch out phenobarbital may be worth exploring. So far she is up to a therapeutic dose of the two approved drugs to slow cognitive decline. She enjoys some light exercise, but has to be careful of her knees. She's used to a healthy diet (and like me, finds it hard to lose weight even when eating a healthy diet.) She's sleeps well, except when she worries about missing cats during the night.

Possible Short-Term Steps: You may be able to add some Vitamin B-12 methylcobalamin, which is more bio-available, which is recommended by Dr. Bredesen, and which comes in a nice cherry-flavored, chewable pill, that she would be willing to take. You may want to experiment with protein shakes, which some members have found are enjoyed by loved ones who begin to lose interest in other foods, and who can then sometimes be encouraged to get necessary nutrients. You may also find that if you ask for an appointment with the neurologist to discuss the phenobarb, and let him know that, although he may not have intended it, you felt ignored and that he didn't care, you'll have a worthwhile talk. If not, Pittsburgh is a big enough place to ask some of the folks at the Alzheimer's Association for recommendations of other neurologists who may have more openness to new ideas, or who have nurse practitioners who are much more supportive and helpful to families seeking to determine what medications and interventions will be used.

Goals and Primary Concerns:
My take-away: Your major concerns are two-fold: one, that you literally are not being heard by Carol's neurologist and two, that the health care system as a whole, the Alzheimer's Support community and your family and friends see Carole's situation as hopeless or frightening and so are not offering any ideas for improvement and moral support, instead focused solely on medication. You are worried that if Carol continues on medication it may not help, it may make things worse, it may lead to more medications and you may not be able to change or stop the medications. The effect of not being able to make that choice in the future makes you feel that you are giving control of Carol's care to the medical establishment, in violation of your own deeply held beliefs and love of Carol.

Possible Short-Term Steps: : Ben, the most important ability we have is the one to say "No" or "Yes". You will not give up the ability to say either of those to medications, or to decide that it's time to stop them. I would suggest re-framing your sense of "working against the whole world" to "working to make a care team for Carole and me that can support us in this journey". I often told parents of kids with TBI that I couldn't predict the future or answer their questions, but I could travel the path a ways with them. You also can re-frame this as not a fight for Carol's health, but a process, with expected mistakes and discoveries, about what Carol needs now. What can she do during the day to have a better sleep (some suggest very bright light in the morning, and limited screen time at night)? Are there friends of hers who can take her out for a slow walk with conversation on what interests her, or to go to an art museum, or to visit a playground or have her nails done? Is there a group that provides stimulating activities like chair yoga or other exercise that she could join? A recent study showed that while it was difficult to show changes on cognitive tests like memorizing word lists, people with Alzheimer's could re-learn ways to do things that had been meaningful to them with support.

Ben, excuse my excessively long reply. Please know that I believe this is not a hopeless quest; it is a way to say the goal is different now; How to help Carol find joy, and beauty and peace and love and feel competent. For myself, I won't care about knowing what the date is or who the President is, if I know that my family is ready to laugh with me, and to calm my fears and to see life as a journey I want to savor to the very end.

[HBBApoe]

Thank you so much for the replies. These are very comforting, and the information is appreciated.

I believe that there are many causes to cognitive decline, as Bredesen argues, and I would love to be able to find and target the appropriate ones. Conventional doctors have little interest in finding causes, perhaps because they believe there is little hope for improvement. How can I have a meaningful discussion with the doctor when my position is that medications are not really effective, and will have long-term negative effects; and his position is that adding medications is the only tool available? I worry that medical doctors, in general, are somewhat arrogant and don't like having their recommendations questioned.

As I indicated before, I was unable to get Carole to keep an appointment with a Bredesen Protocol doctor (we are fortunate to have one pretty close to home), and it is very difficult to get her to go to *any* doctor appointments or labs, as she denies that she has any problem that needs attention. Actually, getting her to leave the house for any reason is difficult--she is afraid to leave the cat(s) alone. I'm wondering if it's possible to have a nurse come to the house to draw blood (which she also hates) and do other tests.

I will try again to talk with the neurologist about my philosophy, although it seems he is not very interested. I will also talk to the PCP who has been more responsive and sympathetic. Perhaps getting him to be more involved in managing medications would be good, and at least make me feel more comfortable.

[slacker]

As I indicated before, I was unable to get Carole to keep an appointment with a Bredesen Protocol doctor (we are fortunate to have one pretty close to home), and it is very difficult to get her to go to *any* doctor appointments or labs, as she denies that she has any problem that needs attention. Actually, getting her to leave the house for any reason is difficult--she is afraid to leave the cat(s) alone.

Crazy idea. Put the "cats" in a cat carrier and put it in the car when the two of you need to leave the house.

Given how motivated and creative you are, you are probably already listening closely to your wife to figure out what she is comfortable doing. It may be challenging to get past her resistance, and certainly worth doing in a gentle way. Hopefully she knows that you care about her and want what is best for her. Take care of yourself as well.

[HBBApoe]

I've been silent here for sometime now. Let me say again how much I appreciate all the supportive responses.

Carole was admitted to a memory care facility in the (Pittsburgh) area six weeks ago. She is adjusting to the new environment, and doing OK socially. The staff people seem competent and caring. But, of course, the dietary plan is appalling: three meals a day including desserts, lots of sugar, fat and salt. Carole has noticeably gained weight, and has increased swelling in her legs and feet. While I spent the first few weeks worrying about Carole's psychological state, now my primary worry is her physiological state, and I can only imagine that her health will continue to decline. I feel that we're headed into the medical nightmare that seems to be the rule for aging people these days. Trying to get the facility to provide a sound diet seems like a hopeless battle...

I'm wondering whether there are memory care facilities that focus on the health of the residents, rather than just managing the disease? Now that we know a lot about treatments (diet, exercise, etc.) for Alzheimer's, it would seem logical to apply these principles to the facilities that are caring for these people. For instance, we could have a Bredesen Protocol facility that would assure that residents would get all the needed tests and experience the lifestyle factors that would be most beneficial in accordance with what the research has shown. But I guess the problem with Alzheimer's care is much the same as with our "health care" system in general: politics and entrenched financial interests.

I guess I'm just venting here. Thanks for listening. I welcome any thoughts.

Ben