After reading "I'm Still Alice": I know I raise a terrible topic here that some may want to back away from and I sincerely apologize if anyone is offended. First, let me say that I am not suicidal. Second, I am not promoting suicide or suggesting this as a way out by any means! And I am conflicted just as much as the next person about what would God's will be for me. But I can't deny having thoughts about having some type of plan for when I can no longer function or have anything remotely suggesting quality of life! Wasting money on healthcare does not sit well with me. Naturally, vanity, pride and dignity all factor into these thoughts as well.However, the most horrifying thoughts about what the future holds is perhaps having to re-live and experience again the depth of grief and pain over and over again of lost loved one's! Maybe I shouldn't have read the book but it rang true for me feeling the same way that Alice did when she devised the escape plan. 

Ilee, I read the book when it first came out.  These are my thoughts. 

Not everyone lasts until stage 7.  Some patients die of another disease before that time.

I want to prolong my time in the early stage when I have control over my life.  That's why I focus on my independence and performing Best Practices, .

If I do progress to dementia, I want to prepare for that time now while I can define what COMFORT CARE means to me.  It's not true that stage 7 patients are always unresponsive, they just need a certain type of care.  They can still feel and enjoy their lives.

One thing I did for me was to read obituaries and stories of people with terminal illnesses, such as end stage cancer and ALS.  I wanted to know how others, who are usually much younger, dealt with such a prognosis.  In all cases, they wanted to focus on making the most of the time they had left, with including continuing special projects or activities in their lives and spending time with their loved ones, whomever they might be.  This is what I am doing, focusing on my special projects and activities and spending time with the few people who have not abandoned me.  I want to leave a legacy of love.

Since so many of my "friends" have abandoned me, I turn to God to be with me.  God will never abandon me.

Ilee, euthanasia is a topic that comes up at times.  There are many uncomfortable topics that appear in discussing dementia.  In fact, the vast majority of topics are uncomfortable.  But we patients need to know and discuss them.  I've had 5 years of thinking about this topic.  There are many ill and very disabled people with "poor quality" of lives.  What is considered a poor quality of life?  Who defines a poor quality of life for another?  I don't want someone else deciding for me.  Should they all be euthanized?  How much time should they be given before they get their hemlock?  

I'm interested in reading the views of other patients.

Iris L.

Hi,

I did listen to that book on CD.  Also, met the author.  Good book.  A little scary, though.

I do remember in the beginning when I was first diagnosed with EOAD, having all kinds of strange feelings.  Anger, frustration, fear, anxiety and depression.

I focused too much energy on my feelings.  But that is what most of us do in the beginning.

I went to a therapist and got on an antidepressant.  She helped me realize that it not just about the things we are loosing but how much we still have to give to our family, friends , others including ourselves.

I am very blessed to still be in the early stages of my disease.  I have participated in two drug studies.  One I am currently in now.

I agree with Iris.  We are still able to participate in life.  Go for it.

Best Practices, eating healthier and exercise both body and brain.  Continue to be social. (Which is sometimes difficult).

Remember, you are NOT alone.  We are here.  Welcome to OUR family!

We have a toll free 24/7 hotline @ 800-272-3900.

Post as often as you feel like.

Take Care.

Peace and Hope,

Lisa

I'm reading the book, I'm still Alice now. Taking a long time to get through it because I have to reread so much of it to keep the story line going.

I've thought much about the "end" and I have to agree with Iris. So much can happen between now and stage 7 of AD. I have some other health issues which I think will trump AD near the end so I'm not worried about it. These other health issues now seem like a gift from God to keep me from having to handle the latter stages.

Just my thoughts on the subject. I know its different for everyone. I just keep trusting, praying, living, and enjoying life for now.

God bless, Paul

http://www.nextavenue.org/article/2013-08/take-virtual-dementia-tour

another book, rare maybe be located through a library search is called GRAMP by Mark Jury. This is real life with photos, 2 brothers did a photo story of their Grandpa when he had Alzheimer's and also document his way out:

He holds a party and says "See something you like? Take it! Enjoy" and soon removes his teeth, refuses food and water and dies in 7 days peacefully in his own bed.

His family and local doctor support  through this. 1972

I ordered the book for my collection.

I worked with a man who simply refused food and water and was gone in about 8 days. he was a very wealthy man who lived it up, who had cared for his own father who got trapped in nursing home and was miserable. This is not suicide, it is dying in your own way.

We have so much taken away from us, so many people around burdened and crabbing - who needs it? Hospice will not come in unless you already have an expected death within 6 months. But even then...

I reject the term suicide. "Still Alice" was a good novel written by someone who had observed dementia patients, (half the book is a reference to Harvard) not by someone living it. She has 2 homes, sisters and husband and daughters and housekeepers. Dying is a natural process. Gramp had it right.

When my Father suffered the nursing home neglect post hip fracture Hospice moved him to a hospital to die for the convenience of my Mother. I stayed in hospital with him and he was not given fluids or food, he did not want them, and he died at my side very peacefully. Took about 10 days - part of that he was waiting for my children to show up.

Call it your right to not suffer, not suicide. But can we count on anyone to support our wishes when we can not speak up? I can't even get divorced without the judge assigning my a zookeeper who I WILL PAY to run my life.

I learned one thing - when I log in to boards I get a list of recent posts and used to click on any that interested me. Often ended up in caregiver forum and felt like I had walked through Willful Ignorance and Unnecessary Suffering, made my skin crawl.

Last night my husband finally said he needs a few days to consider if he can deal with "what is ahead" for us - well after listening to his mother squeal how horrible for HER her husband's Lewy Body dementia was, again let's set the bar as low as possible and make it is awful as possible and then vent and give each other sympathy...well, I have seen some of the worst "care giving" in my life and do not intend to be part of that show.

It is not suicide, it is dying on one's own terms. Someone wants to do the bedsore nursing home routine, or a plush hospital with tubes and machines and money down the drain, go for it. I want to lie down and sleep, dream, no food or water, prayers and sweet peace at the end.

It is NOT suicide to want to die some days. That Alice book disturbed me greatly, voyeuristic and from a moneyed point of view.

I will not live to see the emergence of Alzheimer Village living, so I am making my own. Have witnessed too many American Style deaths where the money is drained out, everything done to keep it tidy for family, and the patient suffers,

not for me. If at all possible, not for me. Spare me the final insults.

I too rely on prayer and my church to get me through the uncertainty of this life, this culture, this world. Doubt anyone will honor my wishes.

http://doctordementia.wordpress.com/tag/de-hogeweyk/
  how it works in civilized world...

Lisa,

I noticed that you joined in 2011 and responded in recently. I am just in the figuring out stages, but have been experiencing symptoms for 5 years. Is there a book or website that discusses the progression? It seems to come in waves for me....months of stagnation and then I will have a week or two of some cognitive loss, most recently over the last few weeks I have mumbled out sentences that did not make any sense.I am still working (I am 4 and am wondering how to know what I will lose next and to what degree? 

Thanks for any help or words of advice.... I've never used a message board before.

Trisha

Welcome to these Boards! So great you can join us. Here are some links that might help: 

http://www.alz.org/co/in_my_community_alz_books.asp

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

http://www.mayoclinic.org/diseases-conditions/alzheimers-disease/in-depth/alzheimers-stages/art-20048448 

Welcome to our online support group, Trisha.  I notice you identify yourself as having dementia in your profile, but you have not had any medical evaluation.  The diagnosis if dementia is a diagnosis of exclusion.  All medical causes of memory loss or cognitive decline must be searched for and excluded before the diagnosis of dementia can be made.  This is because so many conditions and diseases impact memory.   

I can tell you right off the bat, that stress and anxiety impact memory and cognition.  You have a lot on your plate--being a single mom of 4 and a full time teacher. 

How are you doing with your finances, especially paying your bills and taxes?  Although I had had memory problems for many years, I became more concerned in 2003 when I had no idea how to do fill out my tax form, when I had always done it myself in the past.   

Read the 10 Warning Signs of Alzheimer's.  Then take this to your doctor.  If you don't have one, you must get a good doctor who will take your complaints seriously and not tell you are just getting older.  I was told this for many years. 

You can check your medications for memory side effects.  Discuss your medications with your doctor.

If you are using alcohol or non-prescription drugs, read about the cognitive side effects.  Be aware, stopping certain substances cold turkey can be detrimental.  Discuss with the doctor.

Be aware that the perimenopause time can be associated with memory changes.  I did not have this problem, but others have reported memory changes with a change in hormone levels, even men.  Read about this, and discuss with your doctor.   

Sleep apnea, which is rarely discusses and can cause memory changes, needs to be evaluated.  Women may not have snoring as a symptom, but may have only chronic fatigue and daytime drowsiness.  I was found to have sleep apnea.  Some of my cognitive scores improved after I was treated for sleep apnea.

The summer is coming up.  If you will be off for the summer, this will be a good time to work on your evaluation.  Note that if you have poor job performance, you could be fired at any time and lose all benefits.

One thing you can think about is thinking about a trustworthy, reliable and rational person whom you would allow to be aware of your medical condition, in the case you need someone to help you in the future.  Everyone needs such a person, but especially so if one has a serious medical condition.

Please feel free to begin your own thread.  Many times a newcomer gets overlooked when the first post is at the end of an ongoing thread.  You deserve full attention to your concerns.  We want to help you.

As long as you have memory and cognitive concerns, you are welcome to post here.  This board is not only for Alzheimer's disease patients.  People with different diagnoses post here, or even those such as yourself with no diagnosis. 

I hope I have helped you.  The gist of it is, get a thorough medical evaluation so you will know exactly what you are dealing with .  Treat any medical conditions that are treatable.   

Here are the 10 Warning Signs of Alzheimer's: 

http://www.alz.org/alzheimers_disease_10_signs_of_alzheimers.asp 

 
Come back often and update us on what is going on, Trisha.

Here's a website for a group that assists with end of life decisions: 

https://www.compassionandchoices.org/ 

And here's an online brochure from the Alzheimer's Association on end of life decisions:  

https://www.alz.org/national/documents/brochure_endoflifedecisions.pdf 

Trisha,

I'm sorry it took so long to get back with you.  You've been given some great things to read.

Have you been able to read and absorb them??

I was diagnosed @53 with Young onset AD/EOAD.  I'm now 60 and still in the Early Stages.  I do follow Best Practices, eat healthy and exercise. 

I have participated in 2 drug studies.  One failed.  Now I'm currently in another.

How are you doing??  Feeling??

please,write to let us know how you are.

Peace and Hope,

Lisa

Hi Iris,

Thank you so much for writing. I have 2 grown daughters that are always there for me. I am living with one since November 2013. She has made an in law apartment for me...

I have been diagnosed with Early Onset Alzheimers. My dr. is with Mass General in Boston. I was tested with the 4 hour neuro test that they do and have had an mri . between the two tests it was confirmed that I have EOA. Wow, tough to even write it let alone say it....

I am now approved for permanent disability, ssdi, I think its called and will receive my first check this month, yea!!! so I will be ok financially. Health insurance is fuzzy for me. I now have private insurance but will not be able to keep it for long so I need to figure that part out.

again thank you for writing.

trisha

Thank you for your candid reply.

Im with you!

Marsha 

Welcome to our world.  we are so glad you found us.  Do tell us about yourself.  Have you read the book ?  Some of us found it hit too close to home.