New with an advanced stage alzheimer father and struggling mother

[Hamersley2019]

Dear All,
Firstly, i sincerely thank the kind and compassionate people in this group. I am afraid i am just here to take help and have very little to offer. My father is nearly 70 years old who has advanced alzheimer. My mother is struggling with her EBT and financial aid to take care of my father who needs help even with his toilet. He needs to constantly wears diaper and he can pass stool anywhere now. Only three years ago, he seemed to be ok when he was driving a bit and suddenly it is downhill since then. He is a very saintly person , involved in missionary work from his early teens. He is always calm even in this condition. We have a strange feeling that it is temporary setback and he will return to his normal health. We are in Sacramento CA and he has Medical. I would like to know if his Medical insurance will cover his lab tests and how we can order those tests and where we can start given poor financial condition? Please kindly help. He has helped literally thousands with his missionary work travelling all around the world even at the expense of his financial condition and now he and my mother are confined to a rental apartment. We are struggling and provide the care. He is following the diet that is discussed here No grain no sugar etc. We hope that the labs will shed somelight but not sure how to go about ordering and which doctor to ask? Kindly suggest!
thank you
sincerely yours
Ram

[NF52]

Dear All,
Firstly, i sincerely thank the kind and compassionate people in this group. I am afraid i am just here to take help and have very little to offer. My father is nearly 70 years old who has advanced alzheimer. My mother is struggling with her EBT and financial aid to take care of my father who needs help even with his toilet. He needs to constantly wears diaper and he can pass stool anywhere now. Only three years ago, he seemed to be ok when he was driving a bit and suddenly it is downhill since then. He is a very saintly person , involved in missionary work from his early teens. He is always calm even in this condition. We have a strange feeling that it is temporary setback and he will return to his normal health. We are in Sacramento CA and he has Medical. I would like to know if his Medical insurance will cover his lab tests and how we can order those tests and where we can start given poor financial condition? Please kindly help. He has helped literally thousands with his missionary work travelling all around the world even at the expense of his financial condition and now he and my mother are confined to a rental apartment. We are struggling and provide the care. He is following the diet that is discussed here No grain no sugar etc. We hope that the labs will shed somelight but not sure how to go about ordering and which doctor to ask? Kindly suggest!
thank you
sincerely yours
Ram

Dear Ram,

Please accept my deepest appreciation and sympathy for the love you have shown by finding this forum and posting your serious needs. I have had friends whose families lived and worked as missionaries around the world, including sometimes in war-torn areas. Like your father, they focused on helping all those they met without regard to their religious beliefs and modeled values all of us would like to practice in our lives.

I also have had multiple close and extended family members with advanced Alzheimer's and know how quickly and tragically early that can happen. Very few of us are prepared emotionally, physically or financially for the round-the-clock needs of our loved ones when they no longer have control of major bodily functions, sometimes even when they have some higher level skills and seem so close to "normal" Alzheimer's.

It is difficult to have a "conversation" on these needs online, yet I think you are asking for honest and urgent help. I apologize in advance for causing you distress; these words are my own and others may have different views:

Dr. Bredesen's program can often make a difference with people who have been diagnosed with Alzheimer's, but generally that is in the early stages of the disease. By the time Alzheimer's is "advanced", the brain functions that control memory, speech, the ability to drive, the connections to the bladder and bowels, and other connections to the body have all been severely affected, similar to loss of important skills seen after a severe brain injury or a stroke. The lab tests used in the program would not necessarily show the level of those lost connections, although a skilled geriatric team might be able to suggest changes that could reduce his frequency or urgency of bowel movements

What is most important about your father though--his saintly calm nature--is still there, and I think he would welcome the chance to be in an environment with skilled help to meet his increased needs. At the advanced stage of Alzheimer's, that skilled help can be provided sometimes by home health aides and visiting nurse services. Families, with help from social workers and other advocates, may also decide that their loved one would be safest and needs the 24-hour support of a skilled nursing facility. My own mother, who very much wanted to stay home, needed more care eventually and was treated lovingly and skillfully by all the staff at a non-profit nursing facility 10 minutes from our home. I also found the doctor there to be very wise in helping me to understand the stage of her disease, and to plan for how to support her wishes for an advance directive to avoid hospitalization at the end of life.

I would suggest, Ram, that tomorrow you call a couple of people:
* Your father's doctor, who may not be able to share a lot of information with you, but should be able to schedule an urgent appointment for your father based on your description of his needs. If you can go to the appointment with your parents, and ask the doctor to write down the key points, it may help you to later talk with your mother and other family members about what you see in your father's decline.

* The Alzheimer's Association 24/7 Helpline is (800)- 272-3900. These are people who know how to get support and can connect you with the right person at the Sacramento office of the Alzheimer's Association. I frankly wish I had called on them early in my own mother's journey with Alzheimer's, since I might have helped my mother get support earlier. Here's a quote from the website link above:

Our support staff speak English, Spanish, Chinese, Hindi, and many other languages, and someone will always be available to help. Whether you are a person experiencing memory loss, a caregiver, a health care professional, or a member of the general public, we can answer your questions, connect you with resources, or offer support. Please call us, day or night, at 800.272.3900. If you are facing Alzheimer's disease or another dementias, reach out for help. We are here for you.

* Finally, if at any point you or your mother feel your father is experiencing a medical emergency with his incontinence (my mother had a bacterial illness at one point which caused severe diarrhea and required hospitalization for a few days), please contact 9-1-1 and let your local hospital help him get better.

I hope you will find help for your parents and will let us know how they, and you, are doing. We don't want anyone to feel alone in dealing with Alzheimer's. My mother said, just weeks before she died "I cherish the life I have led." I know in my heart that your father still is able to cherish the missionary work he did, and the family he has loved and raised.

[Lisa G]

Please kindly help. He has helped literally thousands with his missionary work travelling all around the world even at the expense of his financial condition and now he and my mother are confined to a rental apartment.

Hello Ram. So sorry to hear about your father and his decline. He sounds like a wonderfully benevolent human being. It also sounds like he needs more and more constant care, which can be very wearing on the family. It is both troubling and overwhelming at the same time, particularly when you have the reality of finances that you must consider.
There is a wiki that can help you start the search to see if there is a practitioner in the Sacramento area. Also, within the APOE4 wiki, there is a section that lists "APOE4 Aware practitioners." There is a medical specialty called "Functional Medicine" that deals with chronic illnesses very well as practitioners look for the root causes of disease. You can use this link to go to that site to also put in your location.
The best way to determine if his insurance company will cover the cost of lab work will be for you or his practitioner to talk with the insurance company to determine if it covers this cost.
You are on the right road by finding this website and making healthy nutrition and other lifestyle choices that should help him. Feel free to continue reaching out with questions and concerns. There are many wonderful people on this website who will be able to continue to guide you!
Blessings to you and your family.

[mike]

We have a strange feeling that it is temporary setback and he will return to his normal health.

Ram, I'm sorry you have to go through this. I lost my dad earlier this year of Alzheimer's. Usually, once you get to "advanced Alzheimer's" there is little you can do to reverse it. Has your dad had an MRI? If not, how was he diagnosed? If yes, is there brain shrinkage, particularly in the hypothalamus? Is there evidence of AB plaque and Tau? If he has none of the above, then it could be possible something else is causing this...some kind of toxin or infection...? Three years seems fast to go from no symptoms to where your dad is now - my dad took closer to 8 years...

[Hamersley2019]

Dear all,
I am only simply overwhelmed with your kind words, encouragement and support. This is human nature at its best. I feel very touched by such readiness to help and offer support. thank you sincerely from the bottom of my heart. I am taking a print out of your inputs and studying it.

Thank you very Mike, Lisa and NF52 (Support Team). You are Just incredible people. I have got to learn a lot from just seeing your kind and loving nature.

Dear Mike, what you have written is something i am investigating right away. We have been to many doctors. MRIs were taken. They just couldnot say anything conclusive until now. I am hearing AB plaque and Tau for the first time. Few doctors who saw the MRI just said, it is old age. one doctor said, he was given several antibiotics when he went to india for a trip when he got ill that affected his brain. One doctor said his B12 . Lately another doctor said based on observation (not any lab or MRI) that he MAY have Lewis Body Dementia. Today we are going to a visit where we will ask about Plaque and Tau Tangles. Thank you very much Mike and others !Iw ill report back for your guidance..

Thank you
Ram

[Hamersley2019]

Dear All,
Firstly, i sincerely thank the kind and compassionate people in this group. I am afraid i am just here to take help and have very little to offer. My father is nearly 70 years old who has advanced alzheimer. My mother is struggling with her EBT and financial aid to take care of my father who needs help even with his toilet. He needs to constantly wears diaper and he can pass stool anywhere now. Only three years ago, he seemed to be ok when he was driving a bit and suddenly it is downhill since then. He is a very saintly person , involved in missionary work from his early teens. He is always calm even in this condition. We have a strange feeling that it is temporary setback and he will return to his normal health. We are in Sacramento CA and he has Medical. I would like to know if his Medical insurance will cover his lab tests and how we can order those tests and where we can start given poor financial condition? Please kindly help. He has helped literally thousands with his missionary work travelling all around the world even at the expense of his financial condition and now he and my mother are confined to a rental apartment. We are struggling and provide the care. He is following the diet that is discussed here No grain no sugar etc. We hope that the labs will shed somelight but not sure how to go about ordering and which doctor to ask? Kindly suggest!
thank you
sincerely yours
Ram

Dear Ram,

Please accept my deepest appreciation and sympathy for the love you have shown by finding this forum and posting your serious needs. I have had friends whose families lived and worked as missionaries around the world, including sometimes in war-torn areas. Like your father, they focused on helping all those they met without regard to their religious beliefs and modeled values all of us would like to practice in our lives.

I also have had multiple close and extended family members with advanced Alzheimer's and know how quickly and tragically early that can happen. Very few of us are prepared emotionally, physically or financially for the round-the-clock needs of our loved ones when they no longer have control of major bodily functions, sometimes even when they have some higher level skills and seem so close to "normal" Alzheimer's.

It is difficult to have a "conversation" on these needs online, yet I think you are asking for honest and urgent help. I apologize in advance for causing you distress; these words are my own and others may have different views:

Dr. Bredesen's program can often make a difference with people who have been diagnosed with Alzheimer's, but generally that is in the early stages of the disease. By the time Alzheimer's is "advanced", the brain functions that control memory, speech, the ability to drive, the connections to the bladder and bowels, and other connections to the body have all been severely affected, similar to loss of important skills seen after a severe brain injury or a stroke. The lab tests used in the program would not necessarily show the level of those lost connections, although a skilled geriatric team might be able to suggest changes that could reduce his frequency or urgency of bowel movements

What is most important about your father though--his saintly calm nature--is still there, and I think he would welcome the chance to be in an environment with skilled help to meet his increased needs. At the advanced stage of Alzheimer's, that skilled help can be provided sometimes by home health aides and visiting nurse services. Families, with help from social workers and other advocates, may also decide that their loved one would be safest and needs the 24-hour support of a skilled nursing facility. My own mother, who very much wanted to stay home, needed more care eventually and was treated lovingly and skillfully by all the staff at a non-profit nursing facility 10 minutes from our home. I also found the doctor there to be very wise in helping me to understand the stage of her disease, and to plan for how to support her wishes for an advance directive to avoid hospitalization at the end of life.

I would suggest, Ram, that tomorrow you call a couple of people:
* Your father's doctor, who may not be able to share a lot of information with you, but should be able to schedule an urgent appointment for your father based on your description of his needs. If you can go to the appointment with your parents, and ask the doctor to write down the key points, it may help you to later talk with your mother and other family members about what you see in your father's decline.

* The Alzheimer's Association 24/7 Helpline is (800)- 272-3900. These are people who know how to get support and can connect you with the right person at the Sacramento office of the Alzheimer's Association. I frankly wish I had called on them early in my own mother's journey with Alzheimer's, since I might have helped my mother get support earlier. Here's a quote from the website link above:

Our support staff speak English, Spanish, Chinese, Hindi, and many other languages, and someone will always be available to help. Whether you are a person experiencing memory loss, a caregiver, a health care professional, or a member of the general public, we can answer your questions, connect you with resources, or offer support. Please call us, day or night, at 800.272.3900. If you are facing Alzheimer's disease or another dementias, reach out for help. We are here for you.

* Finally, if at any point you or your mother feel your father is experiencing a medical emergency with his incontinence (my mother had a bacterial illness at one point which caused severe diarrhea and required hospitalization for a few days), please contact 9-1-1 and let your local hospital help him get better.

I hope you will find help for your parents and will let us know how they, and you, are doing. We don't want anyone to feel alone in dealing with Alzheimer's. My mother said, just weeks before she died "I cherish the life I have led." I know in my heart that your father still is able to cherish the missionary work he did, and the family he has loved and raised.

Thank you again so much. I will contact the hotline for help
Ram

[NF52]

Thank you again so much. I will contact the hotline for help
Ram

Hello again, Ram,
I hope that your visit to the doctor yesterday was helpful and that you and your parents had time to ask important questions. It may be that what the doctors will rely on in making a diagnosis is what is called "clinical" symptoms, meaning what areas seem to be strengths for your father and what are weaknesses. For example, people with Lewy Body dementia seem to have more difficulty walking and with visual skills, sometimes even having visual hallucinations or delusions, and may also have days when they seem much better than other days. (It's named after the scientist who identified it, who actually worked with Dr. Alzheimer in his lab about 100 year ago!) But since lots of people with Alzheimer's also have difficulty with walking or visual skills, and so do people with Parkinson's disease sometime, the assumption is that often these diseases and others overlap in what is called "mixed dementia".

Since lying under an MRI machine for 30-40 minutes while your brain is scanned can be very stressful (I know, I've had about 6 MRIs as part of a clinical research study), the doctor may recommend not putting your father through that again, especially if he would be confused or agitated by the loud banging sounds or feel claustrophobic. The doctor may be able to give your father a diagnosis and may also recommend blood tests to be sure that he doesn't have a B-12 deficiency, or a stool test to be sure he doesn't have some infection or other problem that is contributing to his incontinence.

The Doctor or the Alzheimer's Association may also be able to recommend a certified nutritionist that would accept Medical who could offer some ideas on foods that might help with his digestion. Sometimes as people get older they don't absorb nutrients as well, and foods that they once loved may no longer agree with them--causing accidents and increasing the burden of care for your mother.

I hope you continue to let us know how you and your parents are doing and that you know that you are being a wonderful advocate for your dad, which may be the biggest gift you can give him now. In fact, you may want to talk with your mother about having you added to his Health Care Proxy form (in addition to your mom) and to any medical forms for people with whom information can be shared. That way you can continue to be involved and help your parents navigate the confusing health care system.

Stay strong.

[mike]

Ram, do you have access to your dad's prior MRI reports?

[Nikki2019]

Dear All,
Firstly, i sincerely thank the kind and compassionate people in this group. I am afraid i am just here to take help and have very little to offer. My father is nearly 70 years old who has advanced alzheimer. My mother is struggling with her EBT and financial aid to take care of my father who needs help even with his toilet. He needs to constantly wears diaper and he can pass stool anywhere now. Only three years ago, he seemed to be ok when he was driving a bit and suddenly it is downhill since then. He is a very saintly person , involved in missionary work from his early teens. He is always calm even in this condition. We have a strange feeling that it is temporary setback and he will return to his normal health. We are in Sacramento CA and he has Medical. I would like to know if his Medical insurance will cover his lab tests and how we can order those tests and where we can start given poor financial condition? Please kindly help. He has helped literally thousands with his missionary work travelling all around the world even at the expense of his financial condition and now he and my mother are confined to a rental apartment. We are struggling and provide the care. He is following the diet that is discussed here No grain no sugar etc. We hope that the labs will shed somelight but not sure how to go about ordering and which doctor to ask? Kindly suggest!
thank you
sincerely yours
Ram

Hi Ram,
Wondering how things have been going? Probably there's been some change since you wrote this in March. Medical doesn't cover much, I have learned through my own dealings with my father. He is in a memory home now. Do you know his ApoE status? Have you tried a teaspoon of MCT oil? Not suggesting, just wondering.
Warm wishes,
Nikki