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LostSoul
Posted: Wednesday, April 8, 2015 9:33 PM
Joined: 4/8/2015
Posts: 4


I'm a 49yo single father of a 14yo boy, I was just diagnosed with early onset AD.

What the hell do I do now? I don't have a clue, I have no support structure in place, my sons mother is not a option for him.

I'm in stage 3 from what I am told, I have good and bad days. I'm afraid to tell anyone, I'm afraid to scare my son, I'm afraid people will treat me differently.

As far as my son knows I have a bad memory and sometimes am easily confused, he sees it, he helps me but I'm afraid the words AD will scare him to death.

My doctor put me on Namenda, seems to really help but insurance isn't covering it so that won't last long.

What the hell do I do? I'm truly lost, scared and feeling alone.

Iris L.
Posted: Wednesday, April 8, 2015 10:24 PM
Joined: 12/15/2011
Posts: 18342


Welcome to our online support group, LostSoul. I am truly sorry for the diagnosis you have been given. I want to reassure you that you have options and HOPE. All is not lost!

Despite what you may read, about there being no cure for Alzheimer's Disease, which is true, there is treatment for Alzheimer's Disease. We patients on this board are on treatment. We expect treatment to help us function in our daily lives better, and to prolong the early stages. Treatment is working for us!

The Alzheimer's Association has a saying. "When you've see one Alzheimer's patient, you've seen one Alzheimer's patient." This is because the course of Alzheimer's disease is so variable. Despite what is promoted to the public, the course of Alzheimer's disease can be affected by what we do.

We follow what we call Best Practices. These are lifestyle habits that have been shown to help. Part of your self-treatment will be to research Best Practices to apply them to your own life.

Best Practices include:
--taking medications as prescribed

--eating the Mediterranean diet, including antioxidant fruits and vegetables, and omega-3 fats.

--exercising vigorously

--continuing to stimulate your brain--stay involved in activities--avoid stagnating

--continuing to socialize.

We also get good sleep and avoid stress. We use alternative therapies, such as aromatherapy and whatever else helps.

Read many of the threads and you will learn more about Best Practices.

I consider us patients to be dementia pioneers. We are the first generation of patients to actively take a role in aggressively treating dementia. There are few studies on people like us.

Regarding medications, did the neurologist offer you Exelon patch or Aricept? They usually are prescribed first for Alzheimer's Disease. A combination of one of the above plus Namenda have shown better results for patients.

Is your neurologist one who is a dementia specialist? This is because you want someone who is knowledgeable about making the diagnosis and the treatments. There are many diseases and conditions that mimic Alzheimer's disease. I hope your evaluation was thorough.

The diagnosis of Alzheimer's disease is a rule out diagnosis, meaning all other reversible causes that mimic dementia must be ruled out. It is not unheard of to request a second opinion, to be sure, especially at a younger age.

Are you still working, or have you had to stop working? If you have stopped, you may be eligible for Social Security Disability Insurance benefits. The Alzheimer's Association has worked with the SSA to enable Compassionate Allowances, which will fast-track the application for those applicants with a diagnosis of Early Onset Alzheimer's Disease (EOAD).

Here is an address that will give you more information:

http://www.alz.org/living_with_alzheimers_social_security_disability.asp

It will be necessary for you to make preparations for your future. You do have time to put things together. You will have to name a guardian for your son, and also someone to help yourself. It may be that he will be out of high school before this comes to pass.

Patients are of two minds about disclosing the diagnosis to others. Some disclose to everyone, or at least many people. I disclose to no one. There are several threads on disclosing and talking to family members. Disclosing is serious because people WILL treat you differently, and may even try to manipulate you, or otherwise treat you poorly. Think carefully and consider your goals in disclosing before you say anything at first.

There are other things to do. I don't want to overwhelm you now. Take time to absorb what I have written and what the other patients will write to you. The best thing for you to do now is to read the threads from the other patients. Post back and let us know more about how you are doing. There is much more to tell.

When you post back, you may post on the Younger Onset Alzheimer's board. That is where most of the patients visit and it is more active.

Iris L.






Iris L.
Posted: Wednesday, April 8, 2015 10:37 PM
Joined: 12/15/2011
Posts: 18342


LostSoul, as far as your daily activities go, there are several techniques you can use to help yourself. There are others mentioned in the different threads, especially on the Younger Onset board.

Alan of Colorado, one of our emeritus members, who was himself a psychologist, used to warn us that anxiety and stress reduce our cognition by HALF! So it is imperative that we limit stress and anxiety.

Take your time performing tasks. Be mindful of what you are doing.

Write down notes for yourself.

Use a timer to remind yourself and to monitor yourself.

How are you with using the stove? If you forget, and keep burning food, or leaving the burners on unattended, then you should stop using the stove. I had to do this temporarily.

A very important step is to make note of your driving. If this is at all a problem, you should stop driving until you are stabilized. Then you can determine if you can drive safely. If there is any question, you should find alternative methods of transportation. This is because if you have an accident after a diagnosis, the insurance company may not have to cover you.

You mentioned no insurance for your meds. There are programs that can help pay for medications. When you post back, please include more about your insurance situation. Can you get the Affordable Care Act insurance?

Iris L.



LostSoul
Posted: Wednesday, April 8, 2015 11:31 PM
Joined: 4/8/2015
Posts: 4


I didn't tolorate aricept, what is a meditraianiun diet?
Iris L.
Posted: Wednesday, April 8, 2015 11:51 PM
Joined: 12/15/2011
Posts: 18342


One more thing. Call your local chapter of the Alzheimer's Association and ask to speak with a Care Consultant. Tell her your diagnosis and ask about local resources and if there is a support group in your area.

The telephone number is 1-800-272-3900. This will connect you with your local chapter.

Don't worry if the other patients are older than you. It is important for you to be in contact with people who are going through what you are going through.

Iris L.

Mimi S.
Posted: Thursday, April 9, 2015 1:24 PM
Joined: 11/29/2011
Posts: 7027


Hi Lost Soul,

Do call our help line and get the phone number of your local chapter. I think it's the Delaware Valley Chapter. Call 1-800-272-3900. I know several of the folks in that chapter.

What was the process of your diagnosis? Yes, you have symptoms. (There are other things that can cause symptoms.) Did you get lots of blood tests, a several hour long neuro-psych? At least one brain scan, usually at your stage to rule out other diseases? Philly has a great center and it doesn't seem too far from you.

Ask them to put you in touch with more or more folks in the chapter who also have the disease. Speak with them by phone. Does your chapter have a phone conference for those with the disease? A support group for you that you can get to? Ask about Memory Cafes in your area. (These are places where you can socialize with others with the same diagnosis.)

Do put Mediterranean Diet in your browser. For me, it meant cutting down (almost eliminating) red meats. You want to increase your vegetables and fruits. Nuts are good. Moderate liquor intake. A little wine, especially red is OK. No smoking. I also take antioxidants and Omega 3.

How's your exercise? You want to aim for strenuous exercise several times a week. The aim is to get that heart pumping at a faster than normal rate several times a week. Research has shown that such exercise will build new brain tissue. I don't know if it rebuilds those we are losing; I only know how much better I'm doing since I began the routine.

What time of day did you take aricept? Try a different time of day. It can cause drowsiness, which is why most doctors recommend taking it at night. However, it sometimes can disrupt sleep and cause nightmares, etc. If that was what was happening, give it another trial, but take in the morning. Just don't drive until you see what effect it has on you.

The aricept plus the meds I was taking for another neurological disease caused GI problems. I went on a lactose free diet so that took care of that.

In addition to the ideas Iris gave you, you can also call the manufacturer of any medicine. If you fit their guidelines, they will arrange for greatly disccounted drugs.

Stage 3 is just about the beginning of symptoms. I'd have a conversation with someone at your chapter or your neurologist about your symptoms. They seem to me past that stage.

Do share your diagnosis with your son. Both of you must learn everything you can about the disease. The first book I found after my diagnosis was Losing My Mind by Tom DeBaggio. Ask your librarian. The book, in spite of the title, gave me such hope. Here was a guy diagnosed with Alzheimer's who had written two books. Granted, especially the last one was written with much help. He has since died. I think he lived somewhere in your area.

I do hope you can find someone else to share the burden with. It's a huge secret to keep.

Alz.org has lots of links. Knowledge is power.

Also, as Iris recommended, do become a regular on the Younger Onset Board.

LostSoul
Posted: Thursday, April 9, 2015 5:22 PM
Joined: 4/8/2015
Posts: 4


I went through six years of scans, blood tests and neurophysc tests, it's not a surprise but I used to be hopeful it was something else.

I don't know how to share it with my son, my first instinct is to stick my head in the sand and pretend it's not happening.

We have a family history, the only light in that is most family members lived quite long and were pleasant, the bad side is they really weren't orientated most the time and didn't reconize family. My Neuro says I have been progressing very slowly, but the bad days come more often which stresses me out, once stressed im a mess.

Over the years I have become quite isolated, embarrassed to go out. I can go weeks with no iterations with anyone beside my son. I used to walk for exercise but I got confused and lost a couple times and quite frankly the thought of it makes me feel ill these days.

I'll work on diet, that will be a big change for me. I'm a meat and potatos Guy.

Thanks for letting me vent

Mimi S.
Posted: Thursday, April 9, 2015 7:05 PM
Joined: 11/29/2011
Posts: 7027


Dear Lost Soul,
We're so glad you're staying with us and telling us more.

Re diet: don't try a drastic changer, Little by little. Do you cook for yourself/ Do you like fish? Try some sautéed salmon with a potato and just a bit more veggies than you'd usually eat.


How about exercise? Are you a couch potato? Walk around the block before you turn on the TV in the evening. Next week go further. After a month, begin timing yourself. Can you make a bit faster time than the previous week? Your aim is to get your heart beating at a faster rate than normal for a bit.

The good side is good. Longevity and good nature. Working on Best Practices and figuring out how to get your meds, should improve your physical, cognitive and sociability.

Get your son turned in on your side. He's old enough to be observing changes in yu and wondering, if not worrying. He can turn into your "life couch."



wwkayaker
Posted: Thursday, April 9, 2015 10:34 PM
Joined: 3/4/2014
Posts: 32


I understand your concerns re telling your son I have a 15 year old daughter but diagnosis came when she was 12 and I felt much like you not wanting to scare her and not knowing how much she could understand about Alzheimer's. But even at 12 she noticed something was wrong with my memory. I explained to her that I had this disease and I was taking medicine for it but also that over time it will get more pronounced. The internet is how kids research things today and the results of a search could easily be scary to an adult much less an adolescent. For that reason I encourage you to have that difficult conversation with your son. It is unfortunate that there are not support groups for kids like ours but I would consider speaking with guidance counselor/social worker at his school in hope they could help. Boys his age mostly like to keep things to themselves so I would ask him first if it was ok.

Pre Alzheimer's I was a mental health professional, reading your posts brought me back to where I was when I was diagnosed. Depression, anxiety and concern re our children are the first reactions after diagnosis I'm sure most on this board experienced this and for those of us with younger children it is particularly difficult. Reach out to a Alzheimer's Association care consultant to see if discounted medications might be available and know that depression is a treatable condition.


Iris L.
Posted: Thursday, April 9, 2015 10:44 PM
Joined: 12/15/2011
Posts: 18342


LostSoul, I'm going to be very blunt with you. I fell into a deep depression when one doctor insisted that I had dementia. I finally decided, that if I had dementia, I wasn't going down without a FIGHT. And that's when I returned to the board and became determined about my treatment with Best Practices.

You are doing everything to give in to Alzheimer's. If you don't want to live for yourself, please, live for your son. He has a few years until he is on his own. Although he would still need his dad. My own son lost his dad a few month ago, and it is still traumatic for him in his mid 30s.

Vent all you like, but also take action. There is HOPE!

Iris L.

AngelaD
Posted: Friday, April 10, 2015 9:48 PM
Joined: 4/10/2015
Posts: 25


Hi Lost Soul,

I was diagnosed with early onset Alzheimer's about two years ago. The only reason I was diagnosed quickly is that I was near a university memory center.

Some things that I have tried:
.Find out about local transportation resources ASAP. Perhaps there is a local shuttle or a wonderful church that can help with rides. You must reach out.
.I have also investigated Meals on Wheels as I had trouble with grocery shopping. There was a slight glitch, but because of that I am now connected with the local Area on Aging. You may not need these things now, but you want to investigate while you have the cognition you have, huh?
.Sometime in the future might investigate having an automatic cutoff switch installed on your stove
.As someone else said, call your drug company for the help with drugs program. Your librarian can find out the number for your drug company.

I'm sure other people are doing things out there, but they are now automatic to them.

In my personal opinion, you probably should give your kid credit for being savvy. I think kids are our best resource today. You can always ask for their help with little things at first.

This disease does not come with a gosh darn road map. Please get cracking and help the rest of us!

sophia20
Posted: Saturday, April 18, 2015 2:46 PM
Joined: 4/17/2015
Posts: 4


Dear Sir, you are not lost! I too have what is called younger onset, since we are under the age of 65. If I may ask, how were you diagnosed with AD? Scans? Cognitive testing? You are not alone. Perhaps in your area there are support groups for people with younger onset. There is telephone chat every Tues from 3-4 PM, east coast time. If you call the help-line they can give you the phone # for Nancy Ginden, the facilitator. You would need to talk with her first to be sure you are suited for the chat. Hopefully you are. I am on the chat and find it helpful.

I have not sent messages on this site so I hope that when I send it you will see my name. You may also call the 24 hour helpline and ask to speak with a care consultant if you wish. I have many times.

Best wishes.


SkySici
Posted: Friday, May 29, 2015 3:54 PM
Joined: 9/18/2013
Posts: 10


sending you a hug today.
alz+
Posted: Sunday, May 31, 2015 6:29 AM
Joined: 9/12/2013
Posts: 3608


Lost Soul -

Of course you feel helpless and hopeless. If you have not lived with someone who has dementia all you can base your future on is the Mythology that has grown up around the illness as money began to pour into research and drugs that this is the most dreaded disease ever. It is like being told you have Leprosy.

You can read some of my posts in regard to how the current view of living with dementia has become a horror story that is killing those who have it and those who would provide proper or better care of they weren't all hoping a pill will eliminate the "behavior problems".

Early Onset naturally has different issues than dementia in elderly because many people have children, careers, live month to month financially and can not afford the drugs. ANY long term illness diagnosed causes people to reconsider everything in their lives and has a period of worry and doomsday thinking. This is normal.

In our case though we need to move on rather quickly because as Iris wrote above, and this same advice helped me tremendously, being stressed out makes us lose 50% of our abilities. (my thinking is really clear when not stressed) So you are in a time where it is crashing down on you and at the same time you have to find a way to tell your son you have some problems.

I was diagnosed at age 62 but have had symptoms for probably 10 years or more. I used the diagnosis to plan the rest of my life - as in, I want to live in a peaceful easy to clean space, have happy people assist me, learn to accept help better, make my peace with the past, set an example for my children and grandchildren in how to handle adversity and difficulties.

If you can not afford the drugs, it is not the end of the world. You mentioned Namenda seemed to help you. Some drug companies offer low income people drugs for cheaper. The drugs CLAIM to slow progression, but the drug companies state they "work to slow down progress by about 6 months in some cases".

(They do NOT mention there are other things that slow progression, like not being in a state of terror and having help with the things that are most difficult for YOU.)

I was allergic to them all, had bad reactions and worried I would slide into oblivion if I did not take them. Turns out some of the positive effect from any of them is a placebo effect (according to Peter Whiteouse MD) . I am all for placebo effect and perhaps Namenda really is harmonizing something for you and I hope you can find a way to continue, but you should know people have lived with dementia for 100,000 years now without drugs or lengthy and expensive scans and tests and so on.

The only treatment that works 100% of the time is proper care and support, which I sum up as Love and Courage.

I recommend we all question the fears of what it means to live with dementia.

My children are adults and they each keep their own lives in order and help me when they can. My husband is my only caregiver now and even knowing all I do, all the books I read, my own experience caring for my Father who had "Alzheimer's" , we still had to hammer out a plan that let me LIVE WITH DEMENTIA that took us over a year. He had to learn to stop expecting me to do what I used to be able to do, we fought. It is not a cake walk being married and having dementia, people who do not have a partner are not necessarily in such a bad place but you will need friends or someone to help soon in order for you to calm down.

My thoughts about telling your son would be to do it when you get your feet on the ground. Does he have aunts and uncles? Grandparents? Do you have friends? If YOU are calm about the likelihood you do have dementia then your son who loves you will gradually learn...what you show him from here on out.

You need someone to share your diagnosis with, maybe a counselor. You need something for anxiety if Namenda is not available. You will feel better once you learn you still have precious time and determine to make the rest of your life an example of what you feel is your best life, how you want your son to understand that when someone has a serious illness others come in to lift them up.

It is unfortunate we have to do it for ourselves with a mind already spinning, but it is also a way of becoming very strong inside. If you belong to a church talk to the priest or minister. Join a church if you want. You need someone to help you with your fears about your own future, and fears about your son's future. Once you get moving in that direction, setting up a home that works for a father living with dementia and his son, your anxiety will drop, your abilities will even out.

It is a crushing burden, but one that will shape your lives for the better if you get a grip on dealing with the unexpected.

I have read 20 books on caring for people living with dementia. I cared for my own father and it was wonderful. Your son can help other kids as he learns.

I went to a counselor for 9 months, she had a sliding scale and it helped me focus on keeping my core values and setting a standard for what I wanted my life to be.

My family does not speak to me much, my mother is 95 years old! We live on a very low income and do not have anyone yet to come in. But in your case, your son is going to help you but you don't want him to feel responsible for both of you.

I walk when ever I can, sometimes take an exercise class and just started doing yoga at home I recorded on tv . The beginning of living well with dementia is what we are all working to make easier for each other here.

You have a good life ahead of you, your son is going to become a deeply compassionate person and you will not let him become overwhelmed with adult issues. Your sense of humor will return. You will find someone who comes to help. Open your heart to that happening.

You are the perfect person to contact Dr. Phil show. I am not joking. This country needs someone to challenge the Myth that people who have dementia become useless empty vessels. We do not - but the care for us, when substandard or misinformed, leaves us looking pretty dull. email the Dr Phil show every day for 3 weeks or call them. I have been trying to get him to do a show on exposing what you are going through for 6 months. It could help millions of people.

I have already written too much but somehow I missed your post. Please post again. There is more activity under Early Onset message board.

We who have been living dementia will help you. Your life is not over, the way it was is winding down, you are starting an new life. It will be better than you imagined and certainly better than what the media and current medical climate describes.

I am on your side. Get support. You will handle this in very small increments. It will get better if you do not believe the hype. It is a hard illness like every other hard illness.

love and courage


Geeber
Posted: Monday, June 1, 2015 4:45 PM
Joined: 5/28/2015
Posts: 18


Hello Lost Soul,

I arrived here at the message boards about two months after you did, better late than never they say.

I'd like to omit the Lost in your nickname and just call you Soul.

So hello Soul, you have an abundance of that within you.

I arrived here only two days ago, searching for answers found in knowledgeable ones.

I also am searching the recesses of my inner self by writing what bubbles up from within me.

Therapeutic writing is what this is, so I've been told.

When I landed here on the message boards I received my first dose of overwhelming support.

I also found a bounty of comforting friends in common.

In fact I cried much of the time while posting and reading what members here were telling me.

My diagnosis of Early Onset Alzheimer's Disease struck me hard when I first learned of it slightly more than a year ago.

I cried "Oh God, have mercy on me!" That is when I dredged up the courage to fight,

loving life like never before.

I never feared telling family and friends of my diagnosis.

I'm expecting the challenges honesty may bring. I don't care, it does not matter to me.

I insist on being true to myself and who I am.

I'm confident my friend, and EOAD Soul brother, you will find your own sense of overwhelming here.

Stick around, express your feelings and concerns, ask those questions.

Find those supportive answers and solutions among people here who are ready, willing and able.

Hang in there and be strong, even if you shed some tears as often as I do.

Best Regards


Lisa Ramey
Posted: Monday, June 1, 2015 6:45 PM
Joined: 6/20/2014
Posts: 160


Dear Lost Soul,
You have received great advice from some of the greatest souls on our planet.
Come join us who in the end are just trying to find our way
Each way being as unique as the individual.
Lisa Ramey

ashleyrose
Posted: Tuesday, June 2, 2015 11:44 AM
Joined: 6/2/2015
Posts: 1


I just wanted to write and let you know that you have a lot of people fighting for you & your cause & constantly praying for you.

I am part of a women's flag football team and we fundraise for alzheimer's research and support. we have raised over $60,000 this season. As our big game is on saturday, people like you put a name & face to why we do what we do. I'll be playing for you & your son.

xoxo.

http://act.alz.org/goto/ashleyrose

Mimi S.
Posted: Tuesday, June 2, 2015 7:31 PM
Joined: 11/29/2011
Posts: 7027


Welcome to our world Ashley Rose and thanks for all you do.
alz+
Posted: Thursday, June 4, 2015 5:30 PM
Joined: 9/12/2013
Posts: 3608


Ashley Rose! what a beautiful name.

I wish we fund raised to help the families who are giving their future for the person living with dementia. A community fund of physical help and financial help. Places where those of living with dementia could meet up, vet care for the animals. I worry about people on low incomes who live alone, without money to pay for rent or taxes or medical bills. There are so many of us living on shoestring budgets. I believe there are many homeless with dementia being chased by police out of cars and off sidewalks. Money can go to more than one cause.

research will get funded, but people have had dementia for all of recorded human history, there is not a cure for aging, and the best treatment for dementia is a safe loving place to live.

Again, to not be misunderstood, I love that you raised $60,000 - I am just prodding us to think of helping individuals in the now at least as much as funding drug trials and research.

Love to all of you


Mimi S.
Posted: Friday, June 5, 2015 8:28 AM
Joined: 11/29/2011
Posts: 7027


My opinion is that in the long run, and thinking of the future, that we spend more money on research. If the Alzheimer's Association contributes money for my caregiving, that is wonderful. How is that going to prevent my thirteen grandchildren and, so far, two great grandchildren from getting the disease?

There is an old proverb which I can't quote exactly. Goes something like: better to spend a day teaching someone how to catch fish than giving them a fish.

That does not mean that I have no compassion for those of us who do not have one for caregiving and no money to alleviate caregivers whose ow health has been compromised by their 24/7 caregiving duties.

LostSoul
Posted: Tuesday, August 25, 2015 1:23 PM
Joined: 4/8/2015
Posts: 4


It's nearly 6 months later and I still haven't come to grips with this. I have managed to get the Namenda covered now that it's released in generic form. It seems to help but I have some terrible joint pain from it.

I have continued to hide my illness from almost everyone I know, I just don't want to scare my son or have people treat me differently. I'm not sure how to proceed, here are my concerns.

(1) I have a very abusive ex wife would would try to take my son from my on the slightest hint I had a illness like this. I'm forgetful and have my "confused" moments but I am still able to care for both of us. My son helps me, only knowing his father has "memory problems"

(2) I don't want people to take away my driving, I have no support system and would have no way to get groceries to feed my family. I often forget where I am heading but use a gas everytime I get in the car to assure I go to the right place, I've gotten used to it by routine.

(3) A lot of you wont like this but one of the last vestiges of my former life I still have is my hobby. Twice a week I participate in trap shooting. For those that don't know it's when you use a shotgun to shoot clay discs thrown in the air. It's really my only hobby or reason to leave the house some weeks. I'll give it up someday, but not yet.

(4) I am active in my son's Boy Scout troop, I've been active in this troop since the 70s. This last year I actually forged my medical form to keep it secret. I'm afraid they won't allow me to go to trips anymore. I don't drive or directly manage the kids, I pulled myself back from all positions of responsibility. But I still want to have my life.

I have been thinking long and hard about their disease and have come to the conclusion that the truly lucky victims are the ones whose spouse covers up for them until they are so sick they lose their self awareness. The cruelest thing ever done to me was to tell me I had AD.

I have started to think about what I will do when I can no longer care for myself, I would like to die on my own terms and not be a burden or end up abandoned in a home.

I would have rather not know and slowly sink into my fog happy.

The_Sun_Still_Rises
Posted: Tuesday, August 25, 2015 2:13 PM
Joined: 7/24/2015
Posts: 3020


Hi, and welcome...and I am so sorry. I also have dementia and I am 47, and I care for my mother, a daughter and her baby...and do not have family to help. I have been struggling for 6 years with dementia and I am still driving and getting things done.

Young onset has its own set of challenges because we are still busy providing for ourselves and people count on us and kids are not old enough to take things on.

First thing to do is to breathe. You are the same person you were before diagnosis. And the same person you were 10 years ago. Acceptance comes grief, fear, anger, and denial...and it cycles around like layers of an onion.

When people hear dementia or Alzheimer's they invariably think end of life or walking around clueless. The good news is, you have many years before then. Things do not go all at once. And meds like the one you are on and Aricept are really good at helping many people maintain for a good long while.

It is not always easy to find it on this board, because so many are taking care of people near the end of their lives...and also because many don't know...but there are so many ways you can come up with to help you get through all the tasks you are struggling with. You are stronger than you know. Your brain can also still learn new things.

It helps to learn about the specific parts of our functioning like, working memory and executive function...so that you understand what you are working with. It helps to take stock of what you are struggling with now...and think of ways that you can make those things easier.

Also, take stock of your strengths. Because you are not coming into this empty handed.

There are many wonderful people here. There are a number of books written by people with dementia, the best one I have read so far was called Dancing With Dementia...she made me realize that there is so much we can still do.

When you can no longer work, I have tips for what to do after that. Hang in there.


Mimi S.
Posted: Tuesday, August 25, 2015 3:36 PM
Joined: 11/29/2011
Posts: 7027


Hi Lost Soul,
I would suggest ordering: Living Your Best with Early Stage Alzheimer's by Lisa Snyder of the Shiley-Marcos Alzheimer's Disease Research Center in San Diego.

I would also as a first priority make an appointment with a certified Elder Law Attorney in order to discuss your concerns about your ex as well as other things that need to be done to protect both your son and yourself.

Call you local Alzheimer's Assoc. office and ask about a support group for yourself and at some point for yourself. If there is none you can get to, do ask about a phone support group. You do need support. Coming here is great, but right now you need on.

The question to ask re driving is: is it safe for your son to be in the car with you. Since you are diagnosed at a fairly early stage it is possible it's still OK for you to drive. Do you get mixed up driving? Do you get lost? New nicks on the c? You are eligible for transportation services offered by your county Department of the Aging.

It's been awhile since you first came on. Vigorous physical exercise is so important. It can actually replace brain cells in the brain! And the Mediterranean diet is also important. if it's a big switch, go slowly.

I read that each of the Best Practices has been shown by research to be good. However, when taken together, there is a multiplying effect rather than an adding effect. No wonder so many of us praise them! You might stay where you are for years!

Iris L.
Posted: Tuesday, August 25, 2015 6:52 PM
Joined: 12/15/2011
Posts: 18342


Welcome back, lostsoul. You are still in a state of shock. It may be hard to believe, but if you take steps to begin treatment, you will probably function better.

I have a question about your medications. Are you on Aricept or Exelon patch? Usually, they are begun before Namenda.

Are you still working? If so, how do you think you are doing at work? do you know if you are eligible for a disability pension? You need 40 quarters of work for SSDI.

Are you certain of the diagnosis? I ask because I don't think you let us know how the diagnosis was made. There are many treatable dementias. If this is Alzheimer's disease, then beginning treatment will enable you to think better so you can make plans for your and your son's futures, including making legal plans.

Please post back.

Iris L.

The_Sun_Still_Rises
Posted: Wednesday, August 26, 2015 8:35 AM
Joined: 7/24/2015
Posts: 3020


That is too bad you did not tolerate Aricept.

How are you doing now that you have had some time?


alz+
Posted: Wednesday, September 2, 2015 8:34 AM
Joined: 9/12/2013
Posts: 3608


Two cents more -

not tolerating Aricept was, according to neurologist who diagnosed me, a sign of different cause than what is commonly called Alzheimer's. When it makes you feel recharged is confirms.

As for being in a state of shock - who gets over it? I learn to cope and some days I do lots better than others. It is entirely natural to be in state of shock.

Your ex-wife waiting for a chance to take back your son - that one factor would be my priority. Any huge threat lurking makes thinking and memory stuff diminish. Get legal advice on that.

I used to tell anyone I had ALZ but experience has proved that to be foolish.

We can be taken advantage of and it is a huge problem for people with disabilities.

Also, a dog may be a huge help to your son.

really feel for you, so young. Stay open to good help coming your way.


 
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