I DON'T KNOW IF IT MATTERS HOW ONE'S DEMENTIA STARTS OR WHAT CAUSES IT. mine is a result of a genetic condition that deteriorates artery walls resulting in mini strokes deep in the brain.
What I would like to discover is the likely progression of dementia. Is there a typical pattern of decline. I have been dealing with a lot of depression and myoclonus jerking. Aricept gave me such a bad headache that I went to the ER. I also have diabetes 2 and high blood pressure.
Looking ahead to what I will become is dismal and I think the best course for me to take is to ignore my medication and let the high blood pressure and diabetes take its natural course. why I would want to prolong my life, given what is ahead of me, seems counterproductive and foolish.
If this is read by a lot of caregivers I'd appreciate your holding back on your criticism. I"D like to hear from those who are in the same boat as me, not from those of you who are struggling to care for and nurture people with dementia.

hello Michael,
I dont have answers for you, but I did want to let you know that your situation has deeply reached me. I hope you will find answers Michael, and that the progression will not be as serious as you are expecting.

Do you feel it would be helpful to separate this forum into two subforums, one for Alzheimers and one for Dementia. It wouldnt be hard to do and transfer existing threads as needed


There will always be someone here if you need to talk, Michael.
I cant begin to imagine how hard this is for you.
We are here to support you every step of the way if you need us.

Cheri

I'd like to add my willingness to listen to that of Chemar. I too don't have answers for you. I can only imagine myself in that condition and it is a difficult answer. Sometimes we wish that all our suffering could be brought to an abrupt end, but the life force is too strong and we remain in this world. Please know that someone will answer if you will post so that we recognize your need. I always stop to "talk" to someone if they need help. I don't always have the answer but I am still here.

Billye

Chemar, thanks for the post and for suggesting separating dementia into its own forum which I think should be done. there are many,many forms of dementia some of them fatal like mine,and some are not, and the disease manifests itself in many different ways. Alzheimers is a serious disease and can stand its own forum, just like dementia.

there you go Michael, and thanks to DocJohn for creating the subforum

I will spend some time over the next few days sorting thru the threads on the Alzheimers forum and transferring any over here that are more relevant here

Michael
thank you for your courage in posting so honestly. I hope this can help to provide a support group for you and for others who may find their way here too.

I'd also like to echo what Chemar has written here, Michael. Like Billye has said, I might not have the answers but I will always stop by and read and post if I can help in some way.
Thank you.

Thank you everyone who replied, the sincerity of your concerns for me humbles me,and shames my post, Admittedly I was depressed but I am not sure that depression excuses my pity party.
Just found out my younger brother is also in the process of being Dx'd. he has four kids each of whom has a fifty percent chance of getting the same disease.
That brings the number of nieces and nephews who face the same odds to eleven, add to that my son, and my faimly's little hold of this disease is certain to spred cadasil, from the four of us in my immediate family to six more who the odds say are certain to get it too.

Some time ago, after I was Dx'd, and I knew where my life was headed, I'd state that I was happily on my way to becoming the village idiot. But now that I am almost to that point, I want to tell you, that it is absolutely not a good experience. My memory now is only a faded memory, and my life has turned into a trainwreck. My diabetes doctor wants me to test my blood a mealtimes fourtimes a day. In a week's time, I remembered to test once a day, and I really tried to do what he wanted. I got sent to the diabetes training program and met several great nurses who explained what I should be doing: test once a day, and write down what I eat at each meal. I finally said. Wait..I cannot do that. I am absolutely incapable of doing what you want. I cannot remember to take my medications every day, cannot remember what I ate after i FINISH A MEAL, i HAVE A HARD TIME FINDING MY WAY home....there is no way I will remember anything more than my name. i AM THE VILLAGE IDIOT. and it is not fun, my life is an absolute trainwreck, in shambles. The problem is that intellectually I still function, and I know how bad I screw things up.
So, if anyone is as flippant as I was in thinking that dementia is going to be all right, forget it please, it is no fun. I still have my driver's license, but really I should not be driving and I won't renew it. But, damnit, I need it, I need to get groceries and run occasionally to the hardware store. and I need to get to the Y so that I can get some exercise. I need not to become an absolute burden to my family or to society, and I cannot figure how to avoid being that burden.

For me, the burden is not the doing... but the fight. I don't think your family and friends would mind taking you where you need to go but rather worry about you and the confrontation. From the other side, I can assure you no one thinks dementia is any fun.
I don't have dementia, however, I use a watch with alarms to remind me to take my many medications. Why don't you work with your family to figure out how best to best empower you, without putting yourself and others in danger? Situations are going to change and discussion, while difficult, may be the only way, if you have rational people to talk to (that may not be the case) in order for you to not feel so much the idiot and feel more in control. I have a mother in law with dementia and a father in law, as we say, with denial, as he just refuses to think that anything has changed and continually calls us and tells us she us she is stubborn, will not talk to him, will not eat, etc. I think you just need to talk frankly about what you want now and in the future.

Michael, do you have a Health Care Representative...some one who can speak for you and make decisions about your health care if you are ever unable to speak for yourself? It doesn't have to be a family member..could be a friend you trust or a member of your church. There's no financial responsibility involved...it's like being a "helpful son or daughter."

I think this may relieve some of your fear of being a burden on your family...(burden being your definition, not theirs I'm sure)

Try contacting your senior services or elder care agency in your area. They possibly have volunteers to be health care representative.

Sending you positive thoughts and gentle hugs.