Hi,

This is the name of my blog. I have EOAD/YOAD. diagnosed @ 53 now 55. I am, also, a caregiver to my Mom with AD.

If you'd like to read my blog, please go to

http://lcc-thoughtsfromtherollercoaster.blogspot.com/

I hope I have posted it correctly this time!

Hope you'll come there and read some of my thoughts and ideas. You can also leave a response/comment if you'd like. I love comments!

Any thoughts from anyone after reading my blog?

Hello again Lisa, yeah, I was struck by something when I read, actually re-re-read, your blog. Let's look for quotes from you:

"I think she is forgetting HOW to walk and is now becoming unable to walk. From what I remember in doing Hospice is that losing her ability to walk makes her end stage dementia. The doctors now think she has a combination dementia (vascular and AD)."
". . . both Dad and I both have bad backs so Mom's becoming a handful!! Soon, she'll be unable to assist us at all then we will be unable to get her up out of the bed."

Lisa, you remember how managed care works? If a person can no longer be maintained at the existing level of care, then you move them to the level that will meet their current needs.

Take your time, think through all options. And you could use imagery. Like, what was your mom's favorite chair? Imagine she's there right now, but healthy again. Ask her what she thinks about her current situation. Ask her if it's time to raise the level of care. Or don't, I'm just talking stuff. Let me know how your thoughts are progressing?

SIT AND WAIT, OR CALL FOR HEMLOCK?

Hi Lisa: I read your Labor Day Blog Entry. My heart pounded with your pain. My sympathy extended to the paradox with which you are dealing with you Mom and Dad. It beat even harder because your discussion will soon enough be the discussion of each of us affected by this curse of having AD.

End of Life is an important issue, made more important because our course to it is known and can be planned for our going there. It is even more important because it is such a pain losing our minds and watching our body waste away. Let me stay in Early Stage, I can handle this. The latter stages, about those coming to me I shudder.

What should ours be in our End of Life process? Should we contritely accept and suffer it through awaiting its outcome?

Do we have standing to say: “No, enough already, this makes no sense for me nor for those loved ones around me! My mind and my body are going out the door and my consciousness but waivers in and out as I lie here.”

Certainly, this thought has to be considered: “Why not get on with it to whatever is next. I am doing no good here and but prolonging the heartache and draining the pocket book of those around me?”

That is the practical! Next comes the ethical!

My Rabbi said: “Would you rob your loved ones the opportunity to care for you?” She packed a lot for thought into the simple question.

I have trusted life this far. As I have learned to step back and let life happen staying out of the way, not interfering, not intruding with my own view of what’s best, things have happened as they are supposed to.

For me this means I sit back and allow my disease to take its course.

In the meantime it is mine to expend the effort to do what I can to make that time easier. My effort is comprised in my Alzheimer’s Mission Statement to Advocate for:

quote:

Cost of Care, Economy of Care and the Need of a Different Kind of Care for those in Early Stage AD. This advocacy is my mission to make my having this disease come to some worth as sit in the shade and silently slip into Mid and Late Stage.

This mission directs itself more to a compassionate end. That end is hopefully easing the load of my loved ones. In that I step beyond my immediate circle and include as my loved ones everyone effected by this miserable disease. I hope by doing this I make a dent in the apathy that persists about our disease and the social, economic abandonment suffered by so many because of it.

Lisa428

I wish I could be with you to help with your folks! You have alot on your shoulders. Who will be helping you when you need your "down time?"

Take care of you, first....then, your parents.

M

Dear Alan, Mike and Mary,

Thanks so much for reading and following. You can, also, leave comments on my blog (fyi)

Alan,
Yes, I kinda remember about managed care but I can't seem to get everything together. (Multi-tasking is a bear!) Dad & I have promised Mom NO nursing homes! Hopefully they have enough money to take care of Mom! I'll just have to do my best.

Mike,
I wonder if your Rabbi has ever taken care of a loved one with AD/dementia AND if he did, did he have the resources to do so????
I don't have any ethical dilemmas when it comes to MY end of life.

Mary,
Thanks for asking. We do have a sitter that stays with Mom sometimes but not over holidays. This weekend was just really tough. Also, my sister and her husband are moving down here probably in November to help!

Thanks so much you guys for sharing and caring. I don't know what I'd do without y'all!!

I hope my blog helps others to understand what EOAD and AD/other dementias are and what the day by day care is really all about!!!

Lisa your response is a bit icy!

There is nothing nice about any of this, I am not deluded nor do I believe my Rabbi is. What I wrote about is the difficulty with either measure, "Do it!" or "Don't do it!"

As having AD is not simple, nor are decisions about what to do about it. Affording it is not in the ball park. Doing yourself in to save others is that the choice?

Dear Mike,

I'm sorry if you find my answer "Icy." Many times people of faith want to tell us what WE should do yet many of them are clueless. They mean well. Have read a lot of books on faith, psychology and theology, have studied theories yet few have even "been there!" Hands on care, day by day!

Please, don't misunderstand me. I know Rabbi's, priests, preachers and other religious people. I did some soul searching years ago. What works for me may not work for others and that's ok.

Personally, I don't feel like I will rob my daughter of anything by her watching me slowly turn into something she doesn't recognize and probably won't want to be around but will do so out of love and duty! On top of that, perhaps spending her last dime trying to keep me comfortable??? That's NOT for me or my daughter!

But, hey, we're all different! What works for me may not work for others. I'm NOT advocating anything for anyone but myself!

No hurt feelings, I hope.

I agree with Lisa that the decisions we make are personal meaning that they are different for different people for different reasons and I believe such is okay. I haven't given a lot of thought to my demise except that it will be painful for my family regardless of how and when it happens. Having watched my mother and brother as they traveled their journey with AD, I have seen and felt the impact, on two different levels, of such. I do know that I don't want my children and my husband to spend their lives taking care of me after I get to a point where I no longer have a clue who I am or what is going on with me. I don't see such as robbing them of anything. I think everyone should have the opportunity to live their own lives with the best quality of such as they can. However, in my case, if I don't know what is going on, why would I want to put the extra burden on my immediate family to go thru the gut-wrenching tasks of physically caring for me? I just think what each of us wants and/or think we need is our own individual decision. As far as religion is concerned, to each his own. I think such is our choice.

gyr

I'm 100% w/you! It's a personal decision. And until somebody else has walked their life in my shoes, then they'd understand.

I most definitely DO NOT WANT MY FAMILY CARING FOR ME, changing diapers, making sure that my body is turned over ever so often to assure no bed sores (another item added to the list of AD),talking mean to my family, when I'd have no idea what I'm saying or why! The list goes on and on! I want my demise to be dignified! And you know what? God is supposed to be a forgiving god. I personally feel that why anyone decides to end their life is their own business!

M

First, I have a progressive dementia, probably Alzheimer's. Second, I have a peripheral nervous system disorder, with autonomic nervous system involvement, that will kill me eventually.

Neither of those are predictable on an individual basis, as concerns how long they'll take to kill me. So, here's what I want: Right when I'm entering Alzheimer's Stage 6, I'd like to die of the other disorder.

A couple of obvious problems: Can't schedule those things, I know. And, it's possible that it's all one disorder. Then all the symptoms will be intertwined, and who knows what I'll be like in a few years. My wife seems very certain in her making me promise to not take my own life, but then I don't need watching all day yet.

There have been thousands of religions, so who knows, some of them might be comforting for a dementia patient. Well, so long as we're able to think about it.

To each his/her own!

ttt.

I Love input!

ttt

Anyone else??