Monday, November 01, 2010

An Email From a Friend.......

As many of you know from time to time I share emails with permission. This is one I got just recently. You all seem to be amazed that even advancing in this fricken disease I can still communicate. I want you to know that all of us with AD or other forms of dementia are not always stumbling, bumbling and drooling people. Some to the end, not many still reamin mentally strong, maybe not physically but one cannot have everything. Also this email may give you a hint of why I take no meds for AD, just mood stabilizers, the shit does not work if that helps.**************
Dear Joe and Lynn,
Thank you again for your response...these letters and blogs must keep you both very busy...I don't know how Joe still does it, but thank you from the bottom of my heart.  My father suffered from AD silently...we did not know what he was thinking or feeling...he tried to live life as if he didn't have the disease, including not talking about it.  The only glimpses we had were his physical struggles, his hallucinations, and listening to his frustrations...we had to try to fill in ourselves what was going on in his head.  Joe, you have no idea how much your shared words help us understand what you are feeling or experiencing or thinking...more than you know.  I wish my father could have expressed what he was experiencing, but he didn't, so I am learning from you.
I just checked into your blog...I am sorry to say that I haven't been able to keep up with it regularly (due to restricted internet access), but every time I visit your page, it brings tears to my eyes...I am just filled up with sentimental emotion on how much you share, and your struggles doing it, and your struggles with the disease...thank you for all the work you put in.  I am amazed at how articulate you still are at this stage.
I am so happy you published a book!!!! That's great.
I unfortunately could not find the memorial link on your page...I must be overlooking it.  But I would love to send you the information on my father, and a photo.  I will let my mother know.
I was also thrilled to hear that you are doing the Memory walk in Oceanside.  Before I knew that, I was going to e-mail and ask if you and/or your family if you and they might be interested because I want to do it too.  But I have to get my butt in gear to sign up and send out the e-mails.  My mother did the walk in Florida about a week or two ago.  I'll honor my father with a team bearing his name; however, I do not have family here, so unless friends join me (and they might), I might be a team of one.  I would be honored to walk with you and Lynn if you like.  It sounds like you might not have many walking with you, so if you and Lynn need any help at all, I would be happy and honored to help.  I helped give care to my father until he passed.
This is getting long for you to read, so I will sign off.  If you want to put any of this last response on your blog, you have my permission.
God bless you all (and my father would have agreed with Joe on "...and this great country of ours")

God Bless & Keep You & This Country of Ours!!!
PS Cheryl has no real idea what emails and comments from you folks really mean to me. They keep me wanting to post, even though I feel no one really gives a shit.


Anonymous said...

Joe, and Lynn, I absolutely "give a shit" about what you're going through, and am so grateful you are giving me insight into my grandmother's last 5 years!


margaret said...

Hello Joe and Lynn,

Shared your blogspot to our alzheimers group last night so you will have more visitors. They all wanted to know where your site is...the information you provide will help them as they struggle through this disease...their spouses have alzheimers but can not communicate like you do...this is their opportunity to see through the window to other side. God bless you and you family my friend! Big HUGS! Margaret

Peaceful said...

I don't blame you as far as the meds. My 83yo mom is extremely fit and wants a walk outdoors everyday. I feel this & D3 is working for her better than the aracept. I can't find anything available for an ACTIVE person with this disease!

Cheryl said...

Dear Joe,

I care more than you can imagine. After seeing what my father went through, I have so much compassion and heartache for others going through AD. It is a horrible frustrating disease, but I don't need to tell you that...or all know...if only the rest of the world are helping to raise awareness...thank you.

Regarding the meds...I have mixed feelings on them...some seemed to help slow the progression in my father, but I always wondered if they were also what made my Dad "out of it" and asleep half the time, or whether it was the was hard to know since he didn't know. I do know that a bad drug interaction made him go catatonic and put him in the hospital, almost killing him. Although that was the doctor's fault, whether or not to take meds is a choice that each person has to make. I'm glad you are able to make your own by voicing your is your right.

And who seemed to be at the same stage he was a little over a year ago, and now he is not with us and you are still what does that say about meds?

God Bless you and see you tomorrow on the walk!