Hears a thought

How many caregivers out there ask the person they are caring for "How do you feel about having this?" Or "How do you feel when you can't remember?" I know Joe has communicated to me and has been trying to do the same with all of the readers he has. It is a tough concept to ask thses types of questions. What Joe has been trying to communicate is that there is alot of fear with this disease. He has sat down to eat dinner and forgotten what it is he is doing and how to do it. He is scared of the person sitting next to him even though he has known that person forever. We do not go out alot because he is afraid to go past the edge of the property because he may not come back. This has made a man who would willing take on the South Side of Chicago to do his job, someone who jumps when I walk up next to him. What we take for granted the pepole who have this disease no longer can. Joe mentioned that I had taken a job as a caregiver. I was taking care of a perfectly sweet couple who both had AD. Everyday while I was there we had the same discussions. "Where is my car?" "Why can't I go to the bank?" "It is not fun getting old because you get no respect from anyone." I was sorry when I decided that I could no longer work for this company because I will miss the couple. Try listening to your client, loved one, neighbor. They are trying to say hear me but most of the time can't.
This is what Joe wants on the TV shows, and the newspapers, and the articles that are written about the disease. We all know that there are people dying and we know the medical field is working on a cure for a disease that they don't know how it starts. I have never heard of brain cells regenerating. But then I don't have a degree.
This is the story that needs to be told.
And if it sounds like he is kvechting so be it send him some cheese and crackers. He'll love it.
Lynn

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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")
 
Cheryl

________________________________

God Bless & Keep You & This Country of Ours!!!

joe

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.

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talking it out

Joe just told me about the lady in the previous post. So here's to helping her at least dog paddle. Joe does not talk alot about how he is feeling anymore and as he puts it I nag. It is not so much nagging but wanting in to his thoughts so I can understand what he is thinking and how he is feeling. Yes I know he does not know what he is thinking alot of the times but when he does it is really good. So I am relegated to asking only once a say certain questions such as "what's on your brain?" To which the answer is usually mud, eh, or I forget. I have to ask specifically about how he is feeling to a body part. If I ask in general I can only ask once a day. So if I know his fingers hurt or his head hurts I ask specific questions. I also have learned how to ask the same question in different ways but he is catching on. So he will ask me if I have already asked that for the day. And don't be afraid to say hey it's not my fault I am here for you but let me in once in a while. I need to know how he is feeling so that I am prepared to help with either just holding his hand or letting him be on his own. Even though they have this problem going on in their heads they still need alone time too.
Hope this helps a little.
Lynn

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