Hello all, My father was diagnoses with the dreaded "A" last fall and he and my mother(whom we also suspect) went south for the winter; as always. We are now facing getting them back after a season of not taking medicine, forgetful 'driving', unpaid bills and unkept yards. I visited them for a 'secret discovery how they REALLY are' mission and it was difficult to see. There are a few books that have been helpful in this 'new' journey that I'd like to share. perahaps they can be of service to someone else that is 'new' on the block as well. The first, The Caregiver's Survival Handbook. HOW to care for your again parent without loosing YOURSELF' by Alexis Abramson ( this may help the previous person..it has helped me greatly in choosing NOT to loose myself)., The Second has been the most helpful to date; Learning to Speak Alzheimer's, Joanne Koenig Coste and the final The 36 Hour Day by Nancy L. Mace...it's a John's Hopkins Press Health book. All have scared me to death in what my family will be facing, but also encourages me that there is a reason for the behavior, the disease.

Heard a sweet story the other day I would like to share. Brings tears to my eyes as I think of it. There was an old man that came to the doctor's office and asked for immediate attention as he had " a very important meeting'. The nurse saw his aggitation and asked if it were another doctor visit. He said "No, I have breakfast with my wife every day at a certain time, she's in a home and has Alzheimer's and I can't be late." The nurse asked if she remembers him..and he sweetly said while patting her hand..." NO, but I remember her." That is the reason we lovingly care for our family member, because WE remember them as they were. I hope that these things have been encouraging to you.

youthfulheart,

Welcome to the greatest support you will ever receive!! Thank you for being such a caring advocate for your parents.

I've read 2 of the books you have mentioned, and I particularily loved "Learning to Speak Alz". I'm post some others you may find helpful.

Hope you have POA, DPOA, Living wills, HIPPA form in order.

Good luck, post often, and cry out for help when you need it. We are all here for each other.

Here are some books you can read: Another Country - Navigating the Emotional Terrain of Our Elders by Mary Pipher (this one is not specific to Alz. - but a great look into the mindset of people from this age group)

Learning to Speak Alzheimer's by Joanne Koenig Coste (explains the Habilitation approach - an absolute must to understand yourself and to teach your caregivers)

My Journey into Alzheimer's Disease - written by a Presbyterian minister (addresses spiritual issues not touched upon in other books)

Alzheimer's from the Inside Out - written by an early onset patient - rather depressing but important for us to understand what they are feeling

Living in the Labyrinth

and of course the 36 Hour Day


Here's a post by Campingnana that I love, and have always reposted for newbies, it's called HOW WOULD YOU FEEL


> How would you feel if...you had taken a trip to a
> foreign country where you didn't speak the language.
> You didn't know how the pay phone worked. The customs
> are different. Ordering food in a restaurant proves
> difficult. When paying a restaurant bill with
> unfamiliar currency, you might fear that you are being
> shortchanged, cheated. Tasks so easy at home are major
> challenges in an unfamiliar setting and can be
> exhausting. The person with dementia is in a foreign
> land all of the time.
>
> Persons with Alzheimer's disease commonly experience
> these emotions and feelings: ~worry and anxiety;
> frustration; confusion; loss; sadness; embarrassment;
> paranoia; fear; anger; isolation and loneliness.
>
> To understand someone, you must "walk a mile in his
> shoes." When you do walk this mile, or run this
> marathon, as many caregivers feel, you begin to see
> one of the underlying surprises......the so-called
> inappropriate behaviors of Alzheimer’s disease are not
> all that mysterious or out of place. They often stem
> from the person's efforts to make sense of his or her
> world, to navigate the maze of dementia. If any of us
> were afraid of something, if any of us had to give up
> most or all of our favorite activities, it would be
> perfectly normal to be sad or anxious, to hide things,
> to wander away from a possibly threatening situation,
> to leave the house if we think we're late for work, or
> to strike out at someone we think is trying to hurt
> us.
>
> **The feelings of loss, confusion, and even anger are
> normal feelings caused by dementia.
> **People with dementia are working very hard to make
> sense of their world, to see through the confusion and
> memory loss.
> *"Walking a mile in the shoes" of the person helps us
> overcome denial and gain acceptance.
> **Taking time to think about the experience of the
> person helps us develop empathy and be a more caring
> and effective caregiver.
>
> Try this to help you understand the impact of
> dementia:
> Take five small pieces of paper.
> On each piece, write one of your favorite activities.
> (A typical activity might be visiting the
> grandchildren, taking a day trip in the car, enjoying
> a favorite hobby, going to work, trying a new recipe,
> playing golf, or talking on the phone with an old
> friend.)
> After you are through, select an activity, think about
> how much you enjoy it, and then imagine giving it up.
>
> Take the piece of paper listing the activity, wad it
> up, and throw it away.
>
> Continue to do this until you have discarded all five
> pieces. How do you feel?
>
> The odds are that you are now experiencing the
> feelings of loss that many with dementia feel. Sadly,
> their losses are real, not "paper losses." Worse, they
> cannot choose the things to give up. That choice has
> been made by Alzheimer's disease.
>
> We all worry or become anxious at times. I worry about
> having enough money to pay all of the bills each
> month.
>
> Almost all of us occasionally misplace car keys. The
> keys turn up eventually, but the search can be very
> frustrating. I can't imagine losing them every day,
> every hour. I have lost my house key and I still
> haven't found it.
>
> What if your friend didn't show up for a lunch date?
> Did you get the time and date wrong? Did she get in an
> accident? What if you tried to call and they didn't
> answer? For many people with AD, confusion is a daily
> experience. The person is never quite sure about
> anything.
>
> We normally define ourselves by our jobs, our
> relationships, or the things we do. A banker, a
> farmer, I am Keiths mother, I am a fly fisherman. If
> any of us had to make a major change in life and these
> roles were taken from us, we would experience feelings
> of great loss. People with AD loose these titles and,
> as a result, loose important and meaningful roles.
> Eventually, they will be unable to work and will have
> to give up favorite activities. Sooner or later, the
> losses mount. Sometimes, we caregivers tend to focus
> on our own losses and forget to acknowledge the losses
> of the person. The person with AD experiences painful
> loss day after day.
>
> All of us experience moments of sadness. Perhaps you
> remember a failed relationship or the loss of a
> beloved pet. Maybe a poignant story on the news makes
> you teary. Sadness can be fleeting, or it can be
> long-lasting and associated with a profound grief
> process. Like happiness, sadness is a part of life.
> Feelings of sadness are often pervasive among people
> with dementia. A person can burst into tears at the
> thought of not being able to tell a story all the way
> through or at forgetting a name. A person can also
> feel sad over long-term losses, such as having to move
> out of a family home. People who do not have dementia
> can develop strategies to overcome sadness, people
> with dementia loose this ability to work their way out
> of sadness.
>
> All of us can remember a time in school when the
> teacher called on us and we did not know the answer to
> a question. You might recall your collar tightening,
> voice faltering, palms sweating, and face blushing.
> The person with AD is in a giant classroom every day,
> one in which he or she never has the exact answer. A
> woman who always prided herself on her appearance may
> have someone point out that she is wearing her jacket
> inside out. Names are easily forgotten. Embarrassment
> is common for persons with dementia, particularly
> those in early stages who are more aware of their
> mistakes. Mixing up identities is a common occurrence
> for people with dementia. They begin to forget faces
> and sometimes can be confused when people look alike.
> They may confuse genders, thinking a woman with short
> hair is a man and that a man with long hair is a
> woman. Declining vision and hearing can make the
> situation worse.
>
> If your boss starts treating you differently, you may
> wonder if he or she is unhappy with your performance.
> If you see a strange car outside your house several
> days in a row or if someone is standing too close to
> you at the ATM as you're withdrawing money, you may
> become alarmed. Even the most well-grounded individual
> becomes a bit paranoid in some circumstances. People
> with AD often look for an explanation about what is
> happening to them. Why does their family refuse to let
> them drive? Where is their money? When they cannot
> find rational explanations, they sometimes experience
> bouts of paranoia, imagining that someone is trying to
> harm or hurt them in some way. Delusions, or fixed,
> false ideas are extremely common in persons with AD.
> Paranoia is a by-product of these delusions. Hoarding
> or hiding things is common for persons with dementia.
> They may be paranoid that someone is stealing things
> or simply trying to keep track of their valued
> possessions.
>
> All of us become fearful now and then. Perhaps you're
> walking in a big city late at night and hear footsteps
> behind you. Maybe you're afraid of earthquakes or
> tornadoes, spiders or snakes. Individuals with
> dementia also have fears. These may include the loss
> of independence, placing too much burden on family
> members, and getting lost. Other fears might include
> traumas from the past that have risen again in the
> present and fears caused by delusions. Misperceptions
> of vision or space can subsequently lead to a fear of
> falling, particularly if the carpeting on the floor
> has a confusing or misleading pattern.
>
> All of us get angry occasionally, and although no one
> wants to bear the brunt of it, anger has a
> constructive purpose: It can help us fight a battle if
> threatened. It can release harmful stress and pent-up
> emotion. Also, sometimes getting something off your
> chest by becoming angry can lead to healing in
> relationships. It is a myth that all, or even most,
> people with AD are violent. Yet, people with dementia
> can become angry. They may not always understand what
> is happening around them and to them. Anger can also
> stem from a loss of control when they feel rushed or
> unduly pressured to do something.
>
> If we broke our leg and had to curtail most of our
> activities for 4 to 6 weeks....we couldn't go to work,
> we couldn't work out at the gym, had to give up the
> opera tickets, and had to cancel outings with friends.
> During that time, it would be long and lonely. Our
> first day back at work would be the happiest in our
> life! As AD progresses, isolation and loneliness often
> increase. The person can no longer drive and may no
> longer be able to play a weekly bridge game, go
> sailing with friends, do woodworking, go shopping, or
> even walk down to the neighborhood doughnut shop. The
> person loses social contacts; worse yet, friends
> eventually stop visiting. Unlike a broken leg, the
> person's memory cannot be mended.
>
> The feelings of loss, confusion, and even anger are
> normal feelings caused by dementia.
>
> People with dementia are working very hard to make
> sense of their world, to see through this confusion
> and memory loss.
>
> Walking a mile in the shoes of the person helps us
> overcome denial and gain acceptance.
>
> Taking time to think about the experience of the
> person helps us develop empathy and be a more caring
> and effective caregiver.
>
>

and Jane dont forget Deborah's book "Into the Mist"
i pass my copy around to anyone who needs it..
good luck
Youthful
Zerotears

Hi,
I am new to the block also...My mother was diaganosed in June and has lived with me since. To be honest I feel better after discovering this web site. We are not in this alone and you can see how so many people are trying to deal with the same issues. I am going to be taking a little time for myself soon. My husband is taking a few days vacation time so that I can get away for a while. I finally realized that it is not only best for me but for Mom as well. If I don't recharge my batteries I will not be nay good to her. Taking care of a parent who doesn't live with you I think is much more difficult because you can't stay on top of things...Like the bills and the yard. Hang in there,,I am
Ann

Welcome Ann R,

Wonderful that you can get away! I agreed absolutely about the difficulty of taking care of the parents that are not living with you.

My brother and I share in the care of my 87 yr Mom in our homes, but I sooo feel for my friends that have their LO's in NH's because they are constantly running back and forth visiting, and feeling guilty and worried all the time about what's going on when they are not around.

We all have our own different challenges, and this forum is so wonderful because we can learn from each other and support each other.

Thank you Alz.org for providing us this forum!!!

Jane

Here is another one I recommend reading.

The Complete Guide to Alzheimer's-Proofing Your Home (Revised Edition) by Mark Warner and Ellen Warner