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.

“Loving Grand” http://lovinggrand.blogspot.com/

A Granddaughter’s Alzheimer’s Caring Journal; My journey with Gram and how I contributed to her walk into the sunset, sometimes funny, sometimes we shed a tear or three, and always dear to our hearts and embedded into our soul. I love you Gram.

by Terrilee Hodroj
 
Terrilee combines personal stories with lists of resources to help others struggling with caring for a loved one with Alzheimer’s. Terrilee’s blog is a amazing resource with touching stories. http://lovinggrand.blogspot.com/
 
Here is a sample blog entry. Go to Terrilee’s blog to read more.
 
Sunday, June 7, 2009
Fear – Through A Mind’s Eye

I must not fear. Fear is the mind killer. Fear is the little death that brings total obliteration. I will face my fear(s). I will permit it to pass over me and through me. And when it has past I will turn to see its path. When the fear has gone there will be nothing. Only, I will remain. I shall conquer fear itself. Fear will no longer affect me and I will pass my beliefs to others.
No surrender!

Found this in Gram’s handwriting and no surprised I was stunned and was moody the rest of the day. She hasn’t written much for a long time besides a signature or quick note so this had to have been wrote say at least more than six years ago. Perhaps when she first started to notice her own memory issues or perhaps she copied it from somewhere. I really didn’t know, except that it was in her pen without any date or nothing else to go by. It was found among papers she deemed important and where keep sakes were safe.

Finally, I had to ask her about it. When I questioned her she stated she wrote it a few years back. She wasn’t open to much discussion about it so I let the subject drop and tried to pick up her mood. It’s fear that drives her today actually. Her recent abrupt episodes, the blaming of others, the scrambled thinking, etc., can be explained if one tries to see the connection. It’s easy to see looking back over these last few weeks that it’s fear that’s she’s acting out. Since the introduction of Aricept – the fog lifted from her mind as stated by her own accord. However, within the last two weeks, a small shift has been noticed by me. She’s convinced that she’s fine and I’m crazy – that the doctors are wrong, she needs a second opinion – that there’s nothing wrong with her but old age. Arguably she says, I’m still dressing appropriately, I still feed myself, I haven’t lost control of my bladder… It’s non-sense, all non-sense I’m sad to say. Just in these statements, she’s lost the bigger picture. She’s lost so much she can’t even hold a good argument to her point(s). There’s so much more to dementia than putting your clothes on right (she goes to express that she does not wear her underwear on the outside and that’s true, she doesn’t do that ~~ yet), or lifting the spoon to one’s mouth (what about simply remembering to eat) or your latest grandchild’s name or better still why you put the CD in the VHS player. Things like what we can’t remember from ten minutes ago, activities we can no longer do like balance a checkbook or follow a recipe, and how we think there’s no dementia just because one puts there own clothes on. It’s a ridiculous argument that can’t be won with her, so I’ll be the bad girl; the crazy one, the one that’s making her senior moments out to be more than need be. This disease will if her heart doesn’t change the outcome follows a path that is consistent, predictable, and inevitable. For now, I’ll take my punishment for being bad and tomorrow Gram I’ll love you when my pouting’s over and I’ll love you when Alzheimer’s prove you wrong.

Very touching poem isn’t it?

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.

My parents and my in-laws are getting older. My mother-in-law just died last year after suffering tremendously from dementia for many, many years. Dementia; Alzheimer’s – whatever you want to call it, it is a horrible disease. It is an interesting study of contrasts. My parents are more like me (or me like them??) — anal and organized. My husband’s parents are more like him — free-spirited and focusing on the here and now. Both personality traits have their advantages and both have their disadvantages. When it comes to aging, however, being anal and organized tends to be the better approach.

None of us want to age. Some of us never age mentally but try as we might, we will all age physically. And it is a tough process. One of the toughest junctures in aging is when the parent must admit that they need more help from their children than their children need from them. Caring for an aging parent is difficult. It is difficult mentally, physically, and financially.

An estimated 30 million Americans are providing care, for free, to someone over the age of 50, but they’ve barely begun to realize how common or widespread their new role is. And they often feel alone and unsure of what they are doing. Caring for elderly parents involves maneuvering in the murky worlds of medicine, law, hospitals, nursing homes, guilt, fear and family ties.

There are many resources on the web offering advice and information on dealing with aging parents. Like most information on the web, however, it tends to be scattered here, there and everywhere. We have gathered the best videos we could find on the topic of aging parents at www.lipstickwisdom.com. As usual, the availability of personalized stories featuring individuals with advice to offer from having lived through the experience is limited. NBC Nightly News did an outstanding series during 2007 on Aging Parents called “Trading Places” that featured the personal situations of Brian Williams, Dr. Nancy Snyderman, Ann Curry, Tom Brokaw and Tim Russert. It was one of their most popular series ever.

In addition to the NBC Nightly News “Trading Places” series, we have gather videos introducing two movies (which have to be purchased elsewhere), “The Sandwich Generation” and “Surviving Parents”, which chronicle two families’ journeys with their aging parents offering their insights and advice from the emotional to the practical. Videos from experts on the website offer caregiver resources and information on long term care, geriatric care managers, home care and how to best communicate with your parents. We hope the resources we have gathered are helpful in navigating the journey. If you know of videos, articles or other resources that you think would be helpful, please send them to me in either the comment area of the aging section or in the feedback area of the blog itself.

There are several articles in this post:

Why the Holidays Are the Best Time to Talk to Loved Ones
By: Elinor Ginzler | Source: AARP.org | Date Posted: November 2008
From : http://www.aarp.org/family/caregiving/articles/ginzler_family_caregivers.html
 
Elinor Ginzler is a national expert on independent living and aging issues. She currently serves as AARP’s lead spokesperson on caregiving, housing, and mobility issues, including older drivers’ safety.

BY THE NUMBERS

Did you know …
• In 2007, there were about 34 million family caregivers providing care at any given point in time. About 52 million provided care at some time during the year.

• In 2007, the “typical” caregiver in the U.S. was a 46-year-old woman who worked outside the home and spent more than 20 hours per week providing unpaid care to her mother.

November is National Family Caregivers Month—a time to honor the commitment of people all across the country who give their time, energy, and resources to enhance the lives of family members who need help. So who are caregivers and what do they do?

The term “caregiver” designates “a family member and/or friend who provides unpaid care to loved ones who need assistance with daily tasks.” Most of us take it for granted that we can perform these tasks—until they are difficult or impossible for us to perform. I’m talking about things as seemingly simple as bathing, dressing, eating, or as necessary as balancing checkbooks, getting to the doctor, and shopping for groceries.

When friends and family need help, it can mean a little or a lot. And the help that’s required can be short-term or long-term. Every situation is different and unique; that’s what makes caregiving a complex issue. Unfortunately, family members are often caught unprepared for the task.

November is a perfect month to honor caregivers, because it is a time of year when families gather for the holidays. And caregiving is a family affair: More than 75 percent of the care provided within the United States is given by family and friends. So this November, when your family is together for Thanksgiving, take the opportunity to check on Mom, Dad, or other family members, to find out whether they could use help of any kind.

Many of us do assess our loved ones’ living situations reflexively. We look in the refrigerator to check the expiration dates on food products, inspect the home to determine whether repairs are needed, and, most important, sit down with loved ones to talk about how they are doing. Discussing these kinds of issues with family members means dipping our toes into the caregiving pool.

Family conversations about personal autonomy can be challenging. Mom or Dad may say everything’s fine, something akin to “Don’t worry about me.” But you may see your mother having trouble walking, or notice a pile of unopened bills going back several months. You may see dents or scrapes on cars that were unblemished before; or you might notice prescription bottles that have no refills remaining.

Here are some tips for how to start the family conversation:

• Take the focus off the person who may need caregiving. Use the famous “I” statements: “I’m worried about you, Mom”; “I want to be sure that everything is OK”; “I noticed the car had a broken side-view mirror.”

• Try finding a local news article to jump-start the conversation. It might have a title along the lines of, “Senior Center Open: Offering Classes and Meal Program.”

• Talk about a friend who’s having issues with her older parents. For example, say, “My friend Jean’s mom is getting frail. How do you think she should talk to her mom about getting help?”

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