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I Have Alzheimer’s or Another Dementia
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."
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.
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.
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
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.
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
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.
That is too bad you did not tolerate Aricept.
How are you doing now that you have had some time?
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.