http://henleysheroes.blogspot.com

Karen H
I am a loving wife and mother, devoted to the care of my sick husband, while raising 2 children. My husband is 44 and was diagnosed at the age of 36. In April, he will begin his 8th year with EOAD. He remains at home with us, and has been enrolled in Hospice since September. I am a strong believer in raising awareness of EOAD…We need to be the voices for those who can no longer speak. My hope is that this Blog reaches as many people as possible to help create the awareness and funds needed for research. My faith has kept me strong throughout this journey and it’s something I rely on completely.

Karen writes about the day to day trials and triumphs with her family at her husband who has had Early Onset Alzheimer’s for 8 years. Karen shares with the reader her decisions in the care of her husband and thinking that has gone into this care.

Here is a sample post from “Follow You, Follow Me, Our Journey”
http://henleysheroes.blogspot.com/2009/04/nursing-homes.html

Tuesday, April 28, 2009
Nursing Homes??
 

My mom goes once a month to a geriatric psychologist. I can only imagine that once you hit your 70’s, you may need someone to talk to, because you know your future is shorter than most people. I would be happy for my mom if she discussed her thoughts and her feelings, but everytime she goes, she discusses Mike, the kids and I. Yes, she is concerned for us, but when she comes back from her appointment, she relates what Dr. B said. “Karen, Dr. B, said you should do this, why don’t you try this, Mike should really be in a hospital/in patient hospice, he’s not getting the care he needs at home, it’s too much for your daughter and her children…………….” HOW DARE HE???? He’s never seen Mike nor us. Every specialist that knows Mike, that has treated Mike all these years has CLEARLY said to us that if Mike had been in a nursing home, he would not be here today. The level of personalized, loving care he gets at home – is unprecedented.

Why are some people, even medical professionals so quick to THROW people away to nursing homes??? Is that what YOU would want for yourself??? For some people, a nursing home is the only option and I can sympathize with that agonizing decision – but for others, it’s not necessary. They just want the easy way out. Yes, it’s the easy way out. I have the right to say this because I LIVE IT.

Caring for Mike is EXTREMELY time consuming, strenuous, emotional etc etc etc…. but when he goes to sleep at night, comfortable in his own bed and I can lay next to him, NOTHING can take that moment away from us. It’s a shame that others don’t want to make sacrifices for the sake of those they love. The look of contentment, peace and love on Mike’s face when he closes his eyes to go to sleep, is all that I need to get me through another day.

Dementia Nights
Keeping Track of My Father’s Exit. By Alan G. Ampolsk

http://www.metaphorcountry.com/dementia_nights/

 
I’m a writer, photographer, consultant. Age 49. My father was a reporter and editor. Now he’s something other than that. Age 86. Widowed in 2003. His decline started a little earlier. His sister died of Alzheimer’s.

Alan powerfully writes about his experiences with his father and his learning through this trying, emotional life event. Here is a sample blog entry:
 
The List of Pending Things

There’s always a list of pending things. The current one:

Elderlawyers to be notified as soon as asset transfer is complete, so they can go ahead with the Medicaid application. The asset transfer is mostly done… but until the landlord deposits the rent check, the checking account is still over the limit.

Partners in Care to meet with E, the private home health aide. E is a bit threatened by the arrival of the Partners aides. She puts a lot of energy into bad-mouthing them. She puts less energy — none, in fact — into reporting to me on my father’s condition. The charitable interpretation is that she’s a calm person. I respect calm but it has its limits. In my mind there’s a paradigmatic conversation with E that goes something like this…

Me: So how’s my father doing?

E: Oh, he’s good. Everything’s good. He caught fire the other day but you know, he does that. So I put him out. It’s OK.

So I really need Partners to step in and do a little management here. Yes, there’s an argument that I could do it myself but I’ve tried and failed. Professionals are needed — in this case, too.

Partners to move to 24 hour coverage as soon as they can. That’ll be a whole new area of resistance — another bridge to burn when I come to it.

J, the handyman with the maid service on the side, to show up with maid service in tow and actually clean. I mean, now that he’s gotten paid and all…

And of course, up to me to continue to report to Partners on symptoms (with excerpts turning up occasionally here on Dementia Nights…)

I’m sure I can manage this from my new location down here in Maryland. Just haven’t figured out exactly how, yet.

Haven’t figured out how to manage my emotions, either. Or his.

But that’s a different task list for another time.

Dealing with Alzheimer’s Blog
This is my journal of sorts in dealing with Early On Set Alzheimer’s Disease.

http://creatingmemories.blogspot.com/

Kris Bakowski
I was diagnosed with Early On Set Alzheimer’s when I was 46 years old. I am now 53 and working in Advocacy to help fight this disease. I speak on a local and national level about dealing with Alzheiemr’s while living it. Hopefully, my perspective can and will help others.

Here is a sample post:

An Interesting Day

I had to work this morning. We had an event in the building and my job was to take tickets for the event. There were only 300 or so people for the event so that was no problem. Except that some people tried to give me money for tickets, while I was taking up tickets. Then people wanted to carry on a conversation with me while I was taking tickets. I was doing well to say Good morning to people as I was tearing their tickets. I didn’t figure on the fact that people would want to do anything else other than give me their ticket. That really confused me. Then, I had to pull box office reports and figure out the client’s bill. I hadn’t intended on doing that either. So it was a tough day. I can’t do math in my head any longer and I can’t do three things at once any longer. So I was doomed from the beginning of the morning. I had to have people go back over what I was doing and I don’t like to do that. It shows my vulnerability I guess. And, I feel stupid. I went to a conference where others with Alzheimer’s were speaking and that is one of the things one of them said is “How it makes you feel stupid”. It’s hard to get past that thought when you know you can do something or you used to be able to do something and now you can’t. That’s pretty frustrating.

The good side of today was that I got to see my son. He’s the best thing that ever happened to me. And, although he’s all grown up (you are at 20 you know) he’ll always be “my little boy” and yes, he hates me saying that. We went to Atlanta to see him today for lunch. I really miss him and I worry about the day when I will no longer be able to recognize him and how that will make him feel. Although it was raining outside today, the sun always shines in my heart when I see him.