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.

A Mountain Too High chronicles JeanMac’s joys and trials to being a full time caregiver to her husband who was diagnosed with Alzheimer’s at age 58.

amountaintoohigh.com

Below is JeanMac’s first blog post.
 

Our Journey

Words can’t really explain the journey but I’ve decided to try. We were not prepared or outfitted for this one – no itinerary or map, no reference points, no “pioneers before” (who we knew) to share their experiences. Only a vale to walk through – a mountain to climb, sometimes shrouded in fog but always enveloped in love.

Was hoping for more time in the vale but I think we have reached the base of the mountain. Looking up, it seems formidable – the vale so easy.

The climb will be tackled as the vale – small steps at a time, hand in hand, hopefully resting a while at each stage – resting a long while at each stage.

A Good Enough Daughter
http://www.silverplanet.com/blog/good-enough-daughter

As a professional in the field of aging, Sara had seen it all—until her own mother broke her hip at the age of 88 and became profoundly confused, unable to live in her own home. Join Sara on her journey through the strangeness that is dementia while trying to make sense of it all and finding humor in the details.

The original post can be found at http://www.silverplanet.com/blog/good-enough-daughter/i-can-t-make-everything-okay/5611

I Can’t Make Everything Okay
By Sara Myers

I am 57 years old and have sons aged 20 and 15. When I was pregnant, I read a few books about my pending new parent status, and a friend gave me a copy of A Good Enough Parent by Bruno Bettelheim, an Austrian psychologist famous for working with autistic kids. I’m pretty sure I actually read the whole book, but the title and the premise certainly stuck with me. Bruno said good parenting is knowing who you are, understanding your own childhood, and doing your best to be a good parent. He said that was sufficient.

When my 89-year-old mother took a series of falls about a year ago while living in Phoenix, it was my job as the only daughter and “professional in aging” to fly down and do whatever was necessary to make everything right. My mother lived in Phoenix for over 60 years, and she wasn’t about to move or to accept help. So I visited with doctors and talked to friends and neighbors. I brought in the home care workers (against protest), “equity loaned” the house, and fixed and fixed and fixed. I did whatever I could do to make the situation safe while complying with my mother’s adamantly held decision to never leave her home.

Four falls, 4 hospitalizations, and 30,000 frequent flyers miles later, I made the decision: mom had to move near me. Thank God for Jo and Kathy. We all flew to Bainbridge from Phoenix and taxied directly to the local rehabilitation center. I thought it would be less stressful to have mom near me. Not exactly. I made daily visits, conducted chart reviews, talked with staff, and reported to my brothers and to my mother’s hundred friends, all while working and trying to pay some attention to my family.

Realization: I Can’t Make the Situation Perfect

I quickly became slightly insane. My dear husband sat me down and suggested that my recent weight gain was related to caregiving stress and that I should consider something, anything. Soon after, I realized that something had to give and it was not going to be my health or sanity. I had to give up the idea that I could make it all right, that I could make my mother feel good about leaving Phoenix, that I could magically make her walk independently again. I decided that all I could do was be a good enough daughter—not perfect, but good enough.

This and other personal stories can be found at http://www.silverplanet.com/blog/good-enough-daughter.

The Good Enough Daughter Blog
Sara Myers

Sara Myers has over 30 years’ experience as a professional in the field of aging. She is the managing director for the National Adult Day Services Association and founding director of the Washington Adult Day Services Association. She has worked with older adults and their families in a variety of health care settings, helping them find their paths to successful aging and caregiving. She has served on a number of national boards and committees and is a recognized leader in community-based long-term care.

In 2007, while living on Bainbridge Island with her husband and two sons, Sara took on a new role as caregiver for her 89-year-old mother. A Good Enough Daughter reflects that personal experience and recognizes that millions of people in the U.S. share the same life situation.

Are you ready to take care of your parents and deal with Medicare and our screwed up health care system? I wasn’t ready but my father was diagnosed with cancer. my mother had a stroke and my mother in law had a heart attack and kidney failure in the same week. My life changed forever when I got the call that my father had stage 4 cancer and he was 3000 miles away with nobody around to help him.

Father gets moved to a rehab facility and is up all night delusional and trying to get out of bed.

Read the rest of this entry »

A podcast by Vicki Hinze discussing the topic of aging parents from the perspective of having cared for her parents as well as witnessing truths from strangers.