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.

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.

Minding Our Elders

It is the mission of Minding Our Elders to shine a light on the isolation often felt by caregivers and seniors and to give them a voice. The book Minding Our Elders: Caregivers Share Their Personal Stories was written to support the work of family caregivers. Founder and owner of Minding Our Elders Carol Bradley Bursack assures caregivers and seniors that they aren’t alone. Through speaking and writing, she strives to truly carry the message that help is available for them.

This story is from http://www.mindingourelders.com/htmls/stories/speechstories8.htm

Minding Our Elders: Dad – just give me the keys!
By Carol Bradley Bursack

Alice came in saying she’d gotten lost. My mother-in-law had gone to the grocery store – the same one she’d shopped at for thirty years. It was four blocks away. I was staying with my father-in-law, because he couldn’t be alone. A couple of hours passed and I was worried. Finally, I heard her footsteps in the hall.

She looked shaken. Confused. I asked if she was okay, and she said she was, but there was a hitch in her voice. Then she said she had gotten lost coming home. That was the last time she drove.

With my own mother, it was more dramatic. I went to her parking garage to get her car so I could get it filled with gas and get it washed. I noticed the side was caved in, and the yellow marker she parked by had blue paint on it. The same paint as her car. When I went back to her apartment and carefully mentioned the car, she looked totally confused. She didn’t remember anything. It must have been someone else. We got the car fixed, but it happened one again in a week. She finally came out of denial and realized she shouldn’t drive anymore.

Giving up driving is one of the toughest things anyone can do. It’s not just the driving itself, but the sense of independence it gives most people. When you can no longer choose to hop in your car (or even toddle to it behind your walker) and go somewhere – anywhere – you know you have lost something. My experience is that it’s tougher on men of my parent’s generation, than women. The men tended to identify more with their vehicles and also their independence. My dad gave in gracefully, when his eyes failed, and my father-in-law never really quit – he was just slowly losing the energy to even get to the car, so it happened naturally. But my uncle gave in as gracefully and a wounded elephant. Only a massive stroke stopped him completely.

What about the senior who won’t give up the keys? Who insists he or she can drive when you know it’s not safe for them, or for anyone else? There are a few options to try before “losing” the keys down the sewer grate.

If you are lucky, and your elder has had a particular doctor for an extended time, the doctor’s advice may be enough to convince them. But not always.

I’ve found three places with helpful advice. One is The Hartford. The site, www.thehartford.com, offers brochures that have great tips on helping seniors know when to stop driving and more tips to help caregivers convince those who shouldn’t drive that they need to give up the keys. Go to www.thehartford.com/talkwitholderdrivers/ and/or www.thehartford.com/alzheimers/. Your area Agencies on Aging site also has resources on older driver safety at www.n4a.org.

AAA puts out an interactive computer program where a senior (or anyone) can test their own driving skills, in private though a partner is needed. The program is titled “Roadwise Review,” and can be ordered on-line or you could call your AAA office. The company also has a series of booklets: “Straight Talk for Mature Drivers.” The series includes, among others, “Meeting the Challenge,” which talks about ways to compensate for the effects of aging on driving and “A Flexibility Fitness Training Package” suggesting exercises that can help driving performance. AAA maintains that they want to help seniors drive as long as it’s safe. Sometimes, this approach can help extend driving time. If not, it may help convince the senior that it’s time to quit.

Finally, many hospitals and clinics have programs built in, where they will do a physical and psychological exam, and then have the senior take a trained staff member for a drive. They set up the driving to be as close to the experience the senior would have when driving around his or her neighborhood or town. If the person is from a small town, they would be taken to a quiet neighborhood. If they drive in traffic, they would be asked to take the trainer into traffic. Check with your local hospital to see if they have such a program.

The bottom line is safety – for the senior and for others on the road. If you are having trouble convincing a senior to give up the keys, try some of these resources. Oh – and good luck.

For over twenty years author, columnist and speaker Carol Bradley Bursack cared for a neighbor and six elderly family members. Because of this experience, Carol created a portable support group – the book “Minding Our Elders: Caregivers Share Their Personal Stories. Her site www.mindingourelders.com includes helpful links and agencies. Carol’s column, “Minding Our Elders,” runs weekly, she speaks at many caregiver workshops and conferences and has been interviewed by national radio, newspapers and magazines. This article first published in Stress Free Living Magazine.

This story and other personal stories can be found at http://www.mindingourelders.com/.

caregiverchronicle.blogspot.com

The Caregiver Chronicles
 

Alzheimer’s disease and dementia are serious illnesses, but there is humor too. Laughter heals. It’s a great way to reduce caregiver burnout. Feel free to comment on anything you wish on this blog, but don’t hesitate to include the funny incidents too. Do you want to know even more about me? Click the link above my photo to surf directly to my website. We are all colleagues in coping and none of us copes alone.

Bob Tell is a former health care executive with a deep domain knowledge of Alzheimer’s disease and dementia from personal experience. His book “Dementia Diary—A Caregiver’s Journal,” is a memoir that uses humor and compassion to describe his widowed mother’s sixteen year decline into the opaque fog of dementia. “Dementia Diary” has received much praise from experts in the long term care community.

Below is one of his blog entries from June 2008 where he shares a very personal experience during the care of his mother.

The original blog entry can be found at http://caregiverchronicle.blogspot.com/2008/06/why-is-mom-doing-this-to-me.html.

 
Monday, June 9, 2008
Why is Mom doing this to Me?
 
Have you ever asked yourself this question when your loved one with dementia is being obnoxious? I did. Frequently. Then, of course, I felt guilty for having this reaction. Here’s what the social workers told me:

“First of all, it’s a normal question about normal behavior for someone with cognitive decline. Many dementia sufferers have difficult behavior patterns, including such things as overeating without remembering they just ate, asking the same questions repeatedly, physically aggressive actions, removal of clothing in public, loudly insulting people in public places, and… (you can fill in the blanks I am sure with many other behaviors.)

Second of all, it’s not “about me.” It’s about her…or him…or them. It’s a disease process—an illness. Your loved one cannot control the symptoms of this sickness any more than if it were pneumonia, or heart disease, or cancer, or any other dread condition. Things are happening in his or her brain that affect behavior.”

Chances are your loved ones would have been embarrassed to death if their earlier, healthy, selves could see them now. It’s up to us as caregivers to recognize that they are not “doing it to us,” and to forgive them—daily if necessary. They just can’t help themselves.

I know it’s hard to do this when Mom tells you your brother (or sister) is more caring, more solicitous, more anything than you when you know that the sibling in question has run the other way as fast as his (her) legs can move (without ever looking back). She doesn’t mean it! And don’t blame your sibling for running. You would too if you could, wouldn’t you? (Not really, but you do think about it, don’t you?)

So recognize the wisdom of the “social worker” advice I’m passing along. If you can get yourself to ignore the behaviors as symptoms of disease and not take them personally (even when they seem to be personal), you’ll be a much happier person and a better caregiver for your loved one with dementia.

http://caregiverchronicle.blogspot.com/2008/06/why-is-mom-doing-this-to-me.html

Visit The Caregiver Chronicles for more personal stories from Bob and a tremendous amount of helpful information.

http://spiritualcaregiving.blogspot.com/

This blog is written by Sheryl Karas who, for five years ending in 2005, worked as a Family Caregiving Consultant at the Alzheimer’s Association and Del Mar Caregiver Resource Center and wrote a monthly newsletter for families taking care of loved ones with progressive incurable memory loss and dementia. Those articles are now a book and this blog was created to share it with you.

The blog contains tidbits of personal stories as well as a great amount of practical wisdom in addressing the needs of both the elderly and their caregivers.

Tender Loving Eldercare (TLeC)

www.tenderlovingeldercare.com

Tender Loving Eldercare is a blog that shines brightly with practical eldercare advice gleaned from Linda’s many years of taking care of her parents. She intermixes the practical with the thoughtful in a delightful way that is sure to remind you that you are not alone in your eldercare and that eldercare has its joys and grace. Please check out Linda’s blog for wonderful information and advice.

From About Tender Loving Eldercare

Tender Loving Eldercare is a blog that helps you provide Tender Loving Care (TLC) for your aging parents.

44 million Americans (21% of the U.S. population) are currently providing unpaid care for older friends and family. (AARP Public Policy Institute and ASU Research)

This site was created to share my knowledge, resources, experience and insight into family caregiving. As a baby boomer, many friends are starting to face the same issues I have already experienced since my parents are older than most boomers’ parents. I am happy to share what I’ve learned being sole caregiver for my parents since 2000.

I hope it is a place where other family caregivers can go to learn from, encourage and support each other. I want to learn from you as well and welcome your comments!

And this site is here to increase awareness of, and empathy for, families in this stage of their lives — both the seniors and the younger generation caring for them.

I hope when you come here, you get something of value . . . . and leave feeling better than when you arrived.

Who is Linda Abbit?

I am the author of this blog and a classic example of the Sandwich Generation. I have a B.S. and M.S. in Education and am a daughter, wife, and mother — first to my son, and then to my aging parents. This blog is dedicated to the memory of my dear father, Al Brodsky (1906 – 2005), and in honor of my mom, Aida. Yes, the photos at the top of the page are of us.

For fun (and stress relief) I dance, practice yoga and play mah jongg. I love to read and laugh, though not necessarily together. One of my dreams is to see as much of this wonder-filled world as I can.