forgetmenots 
 
 
Treatment and Support for Families Affected by Alzheimer's and other Memory Disorders
November 2012

Vol 3, Issue 10 

 

forgetmenots
Forget-Me-Nots
                                  forget-me-nots
 
  
 Caregiver
 Network
 News

 A newsletter for

caregivers of loved ones

with memory loss





 

November is
 
National Alzheimer's Awareness Month 
 
 Hug a caregiver today!

 

TEST 

  

AN INTERVIEW with MEMORY LOSS 

 

 

We received a lot of comments about "An Interview with a Caregiver" in October's Caregiver Network News. 
This month we give equal time to the caregiver's partner, the spouse/partner with a diagnosis. 
The following reflects a combination of actual responses by persons with dementia.
by Jane Sherman, Early Memory Loss Collaborative Facilitator


man silhouette 
What are the most challenging aspects, the greatest losses, that have come about as a result of your diagnosis?
After so many years of being productive, the days are long without work that has purpose. That was part of how I found my identity.  Now, it's not so clear to me who I am.  And, I am often lonely.

Not being able to drive has altered my life more than I could ever have imagined.  Not only is my independence and autonomy cut off, my ability to go anywhere is no longer my choice.  It is irritating to not be able to run a quick errand when I need to, but more importantly it has cut me off socially.  I can no longer go see friends, drop in on people I care about.  Spontaneity in my life is gone.  Getting me around has turned into a management problem.  It has made me feel as though I am the "problem".    

 

I began to realize that doing things in sequence was increasingly difficult.  Simple things.  I was always handy - could repair things, enjoyed building and landscaping projects.  Now even small jobs challenge me - or take hours to complete when I used to be able to do them in a short while.  It is devastating to realize that this will not improve.  I keep on trying, thinking if I try hard enough I can master it again.  I used to enjoy reading.  Now that is too hard.  For a while my medicine improved my reading, then it stopped helping and I can't read now.   I used to like to cook - now I get mixed up with the utensils and with what goes into which bowl.  It makes me very sad.   

 

How do you deal with your frustration?  With anger?

My frustrations are mostly with myself.  I know myself as a capable person, someone who ran a business, raised a family and juggled a lifetime of complicated issues.  It is hard to believe that so many of those skills are lost.  I wonder who I am!   I look the same and I have high expectations for myself still, so the frustration comes when I can't meet my own expectations and, feel I am failing my wife, who is so good to me and cares for me in so many ways. I feel that I am a growing burden for her and I hate that and THAT makes me angry.  Sometimes that anger builds up and erupts, and it looks like I am mad at whoever is in front of me.  Sometimes I am, but mostly my anger is at myself.

 

Sometimes the opposite happens.  The emotion goes inward.  My frustration is so intense it causes a massive energy drain, an emotional crash. I can't move. And I certainly cannot talk about it.  I can't do anything and feel so desperately sad that the best thing anyone can do for me is to just sit with me, be with me and hold my hand, give me a hug, let me know that I still matter to them.  That I have value.  

    

 

 

Tell me about your experience in social gatherings.  What works and what is difficult now?

I used to be engaged in all kinds of social groups - work, neighborhood, friends, clubs, business associations, sports.   One of the losses is the loss of comfort and confidence in groups.  It is increasingly hard to hear one person's voice in the midst of a lot of people talking.  It is hard to follow a conversation that is happening among a group of people. It is amazing to me now how fast most people speak and how much cross talk happens naturally in conversation.  People seem to interrupt one another to make a point.  I can't follow any of that anymore.  There are so many distractions in a crowd.

 

I used to be in the thick of all that robust conversation, but now I have to get out of that space.  Music is often too loud.  It's overwhelming.  Because I look the same as always, people forget (or they are not aware) that I am trying to manage a whole new set of disabilities.  These disabilities definitely have changed my ability to be in crowds... in noisy restaurants, in big family gatherings, in large parties.  Even loving friends & family who know what is happening with me can't help themselves when they are together.  They revert to their normal ways of being together and I think that is fine ~ but, I have to create a different scenario for myself by leaving the room, finding a quieter place, going to a restaurant with one friend instead of a group and sitting with my back to the room so there are not as many distractions or interruptions.  I have learned new strategies to manage all of this and they work a lot of the time - but not always, so sometimes I just have to leave and go home.  

 

 

You have talked about how difficult it is when friends or family seem to deny your diagnosis or...tell you that you look great, like you couldn't possibly have dementia.  Why is that difficult for you?
It feels like a rejection of who I am now.  I understand that they don't want me to have this diagnosis - and, those comments are probably an expression of their grief over my receiving the diagnosis.  It says they want me to be like I was.  But, it creates a wall between us.  It says, "I don't know what to do now that you have this diagnosis."  It feels like they are saying, "I don't want to be with the you who has this diagnosis."  

The diagnosis is the diagnosis.  I am now on the other side of that diagnosis and, like it or not, have to learn how to live with it.  I need my loved ones more than ever now.  I hope that they will get over their fear and denial and ask me how I am.  Ask me how I feel. As me what they can do.  Ask me, not my wife.  I am still here.

And, that reminds me.... Sometimes I just want to scream out loud, "I am still HERE!" when people talk about me in front of me as thought I am not present.  Even family members.  It feels like they think I no longer have feelings or can hear them.  They tell anecdotes about what is happening with me, my most recent mistake, etc. or about how stressful care giving is becoming for them.  It is embarrassing and sometimes humiliating.  These losses are hard enough but becoming objectified in a discussion right in front of me makes it worse.

 

 

How do you take care of yourself in the midst of all this change?
The name of this illness is change, change we can't stop. Some people just quit when they hear the diagnosis but there are a bunch of us with dementia who are determined to live fully and enjoy all the days we can. One friend has become an activist about dementia.  I have a few friends who have taken up bicycle riding; they say that when they are riding, it is the only time "they don't have Alzheimer's".  Another friend has begun to make pottery.  Two that I know are planning long hikes - one on the Appalachian Trail, the other in Spain.  One has started writing poetry for the first time and another is slowly writing a book about her experience of having dementia. 

But within the hours of a regular day, it is often challenging to keep my spirits high.  Some days are good days, some are not.  I often know when I wake up if it is going to be a good day or not.  The challenge is to have enough strategies to work around the difficult patches. To have enough connection with people to not isolate, but not so much that leaves me worn out and defeated.  It is a complicated work of balance.  

I want to have purpose.  I need to contribute to my family's well being.  I need to laugh and have fun.  I want to share and to be connected to those I love.  I need to know that I am valued and part of my family and community, no matter what.


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Contributors to this article are participants in the Early Memory Loss Collaborative
(for more information see Caregiver Calendar below)
 

   

    


MEMORY CAFES ARE HERE!

 

  

"This time here, when I come to the Memory Caf�, is the only time I feel like I am me again."

 

"I come in with a stranger and go home with my husband." 

 

 

memory cafe logo Thanks to a grant from the N. C. Department of Aging and Social Services,  

and Memory Cafe team leader Jane Sherman,

dementia sufferers and their caregivers have a new resource available in Western North Carolina:  

 Memory Cafes.  

 

This new breed of social gathering, developed expressly for the memory-impaired population, has enjoyed a rising popularity in Great Britain but is just beginning to crop up in the United States.  Asheville is fortunate to have not one but FOUR new Memory Cafes starting in our area!

 

Social interaction is often difficult for those struggling with memory challenges.  Memory Cafes provide a place where those who are living with memory loss, as well as those who are not, can simply enjoy time with one another.  Refreshments are offered, and there are often games, music, and and activities available.  Susan McFadden, author of Aging Together, writes:  "Memory Cafes recognize that we are ALL living with the reality of dementia, and the most appropriate and essential response is to create hospitable spaces in our communities where friendship, love and laughter can be shared by all."

 

Jane Sherman, who facilitates the Early Memory Loss Collaborative groups in Asheville (see Caregiver Calendar below for more information) wrote the grant that launched the Cafes in Wesern North Carolina.  The first Cafe opened its doors on October 20 at First Baptist Church, and will continue once a month.  Leah Brown, senior adults minister, said in a recent article in the Asheville Citizen-Times:   "We want the people involved in this program to feel surrounded by love and support, to create a social environment where people feel included instead of isolated and where they experience joy instead of anxiety and apprehension."  

 

 Click Here to read the Asheville Citizen-Times Article   

 

Memory Cafes are free of charge and open to the public.  Advance reservations are not required.  Caregivers accompanying their loved one must stay on the premises but may choose whether to participate in the activities or simply find a place to sit and read on their own.  For more information, contact any of the Memory Cafe programs listed below.  

 

 

MEMORY CAFES SCHEDULE

   

* Calvary Episcopal Church, 2940 Hendersonville Road, Fletcher: 2-4 p.m. Saturdays, today, Nov. 10, Dec. 15 and Jan. 19; Contact Betty Robbins at [email protected].
* Unitarian Universalist Church, 1 Edwin Place: 2-4 p.m. Wednesdays, Nov. 7, Dec. 5 and Jan. 9; Contact the Rev. Lisa Bovee-Kemper at [email protected].
* First Baptist Church of Asheville, 5 Oak St.: 1-3 p.m. Thursdays, Nov. 15, Dec. 20 and Jan. 17; contact Leah Brown at [email protected].
* Senior Resource Center, 81 Elmwood Way, Waynesville: 1-3 p.m. Mondays, Jan. 7, Feb. 4 and March 4; Contact Suzanne Hendrix at [email protected] 

 

   

    

You Are Invited to Attend.... 

 


Land-of-Sky Community Resource Connections Partnership
Meeting

 

Topic:

Alzheimer's and Dementia-related Illnesses 

Programs & services to support caregivers, families, & professionals

 

Thursday, November 8, 2012 

10:0 a.m. - 1:00 p.m.

Carolina Village in the Magnolia Room
600 Carolina Village Rd, Hendersonville

Lunch will be served

For more information, contact:
 Caron McKay
828.692.4203
[email protected]

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Come to the Second Annual
Fun Friday for Family Caregivers!
laughing people  

Are you caring for a family member or friend?
 
Give yourself a break --
No speeches!   No education!     No classroom!

Just lots of fun and laughter!

Friday, November 9
10am - 2pm

Calvary Episcopal Church
2840 Hendersonville Road, Fletcher

Please Pre-Register by contacting
828.645.9189 or
Celebrating National Family Caregiver Month with
Land-of-Sky Regional Council's Family Caregiver Support Program and Local Caregiver Agencies

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CAREGIVER CALENDAR

 

 
          calendar               
MEMORYCAREGIVERS NETWORK SUPPORT GROUPS

* Free & Open to the Public * 
     

PARK RIDGE GROUP
First Tuesdays, 1:00-3:00 p.m.
  Fletcher 7th Day Adventist Church
Howard Gap Road and Naples Road, Fletcher, N.C.
(just past Park Ridge Hospital)
        

NEW HOPE GROUP

Third Tuesdays, 1:00-3:00 p.m.

      New Hope Presbyterian Church

 3070 Sweeten Creek Road, Asheville, N.C. 28803

        (across from Givens Estates)

  

WEAVERVILLE GROUP

Fourth Tuesdays, 1:00-3:00 p.m.

Weaverville First Baptist Church

63 N. Main, Weaverville, NC 28787

(North Buncombe County)

  

  

    For more information on any of the above groups, contact:  
                                   Mary Donnelly                                                Pat Hilgendorf
                                   828.230.4143                                                   828.645.9189         
                        [email protected]                                [email protected]
 
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Memory Loss Caregivers

of East Buncombe

 

An education & support group

sponsored by the

Highland Farms Residents' Corporation

 

 

Meets every second Tuesday

9:30-11:30 a.m.

Lounge Room 3 (lower level)

J-K entrance of Brookside Building

Highland Farms Retirement Community, Black Mountain, NC

 

* Free and Open to the Public *

 

 

   For more information, contact:

     Mary Donnelly                                                       Pat Hilgendorf   828.230.4143                                                           828.645.9189

 

 

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EARLY MEMORY LOSS COLLABORATIVE
Three Support Groups for persons with early-stage memory loss,
facilitated by Jane Sherman and Mel Kelley
 
The Third Tuesday Group
Meets concurrently with the New Hope Caregiver Group above

 

   The First Thursday Group

1:00-3:00 p.m.

Biltmore Methodist Church

376 Hendersonville Road  Asheville, 28803

 (Exit 50 off I-40)

    

The Highland Farms Group

9:30-11:30 a.m. on the second Tuesday of each month

(meets concurrently with the Memory Loss Caregivers of East Buncombe above)  

  

Initial screening required for all early-stage groups.    
For more information, contact Jane Sherman, 845.641.4680, or [email protected]

 
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"CAREGIVER COLLEGE"

MemoryCare's educational series for caregivers, offered quarterly

 

A series of 6 two-hour lectures for caregivers of persons with memory disorders.  Sessions are designed to im-prove caregiver understanding of different aspects of dementia care. The instructor for the course will be a staff member of the MemoryCare team. Slides and handouts will be available. Space is limited, please register in advance.  There is no fee for caregivers enrolled in MemoryCare and for others, there is an attendance fee for the course.

 

4:00-6:00pm
MAHEC Educational Building, Balsam Room
For more information or to register, contact MemoryCare at 828.771.2219 or [email protected].

 

The current series started on September 24, 2012

 

The next series will begin Spring 2013.  Watch this space for details.

  

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NOTABLE QUOTABLE

 

 

"Never look back. 

You're not going that way."

 

mountain goat

 

           

Need a Speaker?
 

speaker at podium

 

                 Do you need a program for a group event? 

  

Public education is not only a part of the President's National Plan to Address Alzheimer's Disease, it's a part of MemoryCare's mission statement.

The MemoryCaregivers Network staff can provide speakers on a variety of subjects, including Recognizing Early Warning Signs of Memory Loss, Facts and Fiction about Dementia, Better Communication Techniques, and more.  

 

 

     Contact us at [email protected] for more information.

 

MemoryCare relies on charitable donations for operations.  Please consider MemoryCare in your estate planning. 

 To visit our website, click on
 
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