Giving Care

I recently hosted two of my nieces, both with young babies.  While I marveled at what fine young women these two have become, I was also impressed with their mothering.  It’s a wonder to watch their patient, loving care of these very dependent little humans.  The countless interruptions, loss of sleep, and simply arranging one’s life to revolve around the needs of another . . . all with a cheerful acceptance that this is what’s required to make happy, healthy people.

This got me to thinking about the whole idea of giving care across life’s spectrum.  How we are called upon to provide care for another, sometimes temporarily, and sometimes for very long periods.

My nieces are young, with seemingly boundless energy to meet the demands of motherhood.  (Though, I noted that both fantasize about being able to just sleep!)  Their mothering is about love and joy.  They know that their babies will soon enough be sturdy young people who require less of them, at least in the physical sense.

Caring for a person with dementia is, of course, a very different kind of care.  I am privileged to facilitate a telephone support group for such caregivers, the Caring Connection, twice a month.  Caregivers who might find it difficult to attend a traditional, face-to-face support group can connect with each other via phone.  And, I marvel at them.  They are all well past the ages of my nieces, many of them great grandparents at this stage of their lives.  They, too, have been called upon to give care.  They, too, must respond to countless interruptions; often go without sleep; and have arranged their lives to revolve around the needs of another.    But, the people they care for are continuing to decline and will need more and more from their caregivers, not less.

Our conversations on the Caring Connection are wide-ranging.  People are encouraged to share their honest feelings.  I loved it that one caregiver felt comfortable enough to say, “I called to complain tonight!”  She went on to relate that she had had a particularly difficult day with her loved one; she simply needed to vent.  She was in the right place.  Others quickly related to her feelings, which were familiar to all.  I was deeply touched when one caregiver talked about her realization, in the midst of feeling overwhelmed herself, that her loved one was frightened and overwhelmed as well.  Another caregiver talked about how she feels it’s a gift to be able to care for her wonderful mother, even with the challenges involved.  They all share resources that have helped and the things that keep them going.  Many talk about their faith.  And, they remind each other that it’s important to have breaks; to be able to laugh; and to have some fun.

Those who give care are not in the spotlight.  Too often they simply fade into the background of our busy days.   We don’t see them quietly holding the world together.  So, today, let’s lift them up into the place of honor that they so richly deserve.

Susan with her great nieces!

Susan with her great nieces!

Susan Formby is a Care Consultant at the Atlanta office of the Alzheimer’s Association Georgia Chapter.

Framing a Masterpiece

In 2002 while serving as the Executive Director of a Nursing Home in Tennessee, I was asked by our Regional Vice President to add some decorative art to the hallways of this 203-bed nursing home.

In response, I asked our Activities Director to initiate a painting class for the residents. She was reluctant at first, but I assured her that I would purchase the canvases, paint, brushes, frames, and other needed supplies. The paint would be acrylic, so it was not terribly messy and was not toxic.  She agreed and began the art class, starting with our most alert and oriented residents who created some great works of art. All of the resident paintings were signed, dated, framed and hung to brighten our halls.

Shortly after, one of the Activity Assistants decided to try the painting class in our Special Care Unit with residents diagnosed with Alzheimer’s disease or a related dementia.  On her first attempt at this activity, she had a few residents painting and was elated that we had found something new for them to do.  One resident, *Ronald Jones, who was in the later stages of Alzheimer’s disease, was not able understand how to grasp the paint brush, dip it into paint and apply the paint to the canvas.  After working with him for quite a while, the Activities Assistant had a great idea.  She placed latex gloves on Mr. Jones’ hands and showed him how to rub his hands in the paint and then onto the canvas.  He was then able to complete the painting you see here:

Ronald Jones

 

It was framed and I shared with the other staff this Activity Assistant’s brilliant idea of having Mr. Jones don gloves so he could participate.  The staff became energized and began to try different ways to encourage other residents to paint.  We continued to hand the resident paintings in the halls and family members and visitors loved seeing the work of their loved ones and friends.  I made such a big deal of Mr. Jones painting that it was hung in my office for the duration of my time there.  As I prepared to leave this job for my next assignment, I returned the painting to our Activities Director.  At the farewell event in my honor that painting was given to me at the request of Mr. Jones’ wife,  and it now hangs in my office in the Columbus, GA regional office of the Alzheimer’s Association, Georgia Chapter.

That painting was the impetus for more residents and staff members to become involved in the art classes. It has always meant a great deal to me and regularly I receive comments from visitors in my office and I tell the story of Mr. Jones and the lesson we learned from his painting.  This summer, the Alzheimer’s Association plans to begin collaboration with the Columbus Museum in hopes of having more masterpieces created by persons with Alzheimer’s disease or a related dementia.  For me, the legacy of *Ronald Jones will continue.

 

David Marlowe is the Program Director at the Columbus Regional Office of the Alzheimer’s Association, Georgia Chapter. 

*Names have been changed to protect the privacy of individuals

The Butterfly Bush

butterflybush

One rainy afternoon I was visiting Mother at the nursing home. She has severe dementia, and our conversations are mostly one­ sided. I talk about my girls and events in which they and their children are involved. I talk about going to church and to choir practice. Five minutes later I can tell the same story. She doesn’t remember.

On rare occasions she will surprise me with a completely, logical statement or question. For instance, if I overload her with too much information, she will clearly tell me to “Shut up!” The first few times this happened I was hurt and shocked. Mother never told me to “Shut up” in my entire life. Now I know that isn’t my mother saying such things. It’s the dementia talking.

That day Mother asked me where Joe was. Joe was my daddy and has been dead twenty­ six years. I didn’t know what effect learning that Daddy was dead would have on her. When she asksabout deceased family members or friends, I’ve been making up scenarios for where they are; so when she asked about Daddy, I said, “Maybe he’s gone to the feed store. He’s probably over there talking with Mr. Ashmore or some of his buddies.” Mother agreed.

After a while, she asked about him again. This time I placed him in his garden. She said, “He’s been gone a long time.” I told her he would be back soon. Months before, when she could still verbalize, she had told me about a dream she had. Daddy was walking down the sidewalk toward her. He said, “I told you I would come back for you.”

Wanting to get away from this subject, I called her attention to the butterfly bush that grows just outside her window. I commented on how pretty the deep purple blooms were, and added, “There won’t be any butterflies out there today because it’s raining.”

Right away she said, “There’s one.”

Sure enough. A beautiful orange and black Monarch (butterfly) had settled on a blossom. A wave of unexplainable emotion swept over me. I couldn’t ask Mother what she was thinking as she looked at the butterfly. She had her eyes closed. I looked to see if she was breathing. I never thought of my dad as a butterfly, and I don’t believe in reincarnation; but Daddy was a gentle man with a devout and spiritual soul. Who was I to question the One who had created the butterfly and all of God’s creatures? That could be Daddy come to prepare the way for Mother to join him on the butterfly bush.

 

Jo Carolyn Beebe lives in Towns County, GA with her husband, John. She is a writer of historical fiction and also is involved in genealogical research. Her mother is a resident of a Nursing Home in Hiawassee.

Jo Carolyn with her mother Blanche.

 

Veterans Affairs Proposes Changes

Veterans-Disability

Last week Elder Law Attorney Victoria Collier visited with the Programs staff of the Georgia Chapter to give us an update about the proposed changes to the VA benefit that most of us know as “Aid & Attendance.” To say that Veteran’s benefits are complex is an understatement. We regularly refer families and individuals to those that are certified experts in the field of VA benefits if/when they may be eligible for benefits. Our recent visit from Victoria confirmed again why we refer to the experts! There are some proposed changes to the application process which can best be explained in Victoria’s own words:

On January 23, 2015, the VA issued “proposed” regulation that would:

  • Implement a 3 year look-back for transfers for less than fair market value
    • This includes all transfers to trusts and annuities
  • Impose a penalty period of up to 10 years
  • Calculate the penalty differently for Veterans and Widow(er)s; wherein the penalty will be almost twice as long for widow(er)s for transferring the exact same amount
  • Treat all the land attached to the personal residence as “countable” for net worth purposes if the lot exceeds 2 acres.
  • Set an asset limit of $119,220, which includes ALL assets and ALL income of both spouses
  • Limit deductible home health care expenses to $21 per hour
  • Exclude all costs of independent living facilities from being considered as permissible medical deductions

The VA acknowledges that only 1% of VA Pension claimants make any transfers before applying for benefits, yet they want to penalize 100% of Wartime Veterans for these actions. The Veterans and Widow(er)s who will be most effected by these proposed changes are those with any type of dementia, to include Alzheimer’s Disease; those who have modest assets, but more than the asset limit; those who need a safe environment and who desire to live in independent living facilities because they can no longer drive; those who need extensive care; and Widow(er)s of Veterans. These changes will push Veterans prematurely into nursing homes to seek Medicaid, creating a further burden to state and federal budgets. Moreover, senior living facilities, less restrictive alternatives to nursing homes, will be financially crippled by these proposed changes.

*The period for public comment has passed, but you can still contact your representative and voice your opinion/concerns over these changes.

Learn more about Veteran’s benefits from the Veteran’s Administration Website: http://www.va.gov/

Learn more about Victoria Collier’s practice on her website by clicking HERE.

Happy Volunteer Appreciation Week!

10580566055_82b0915cc5_h2013 Vol Appreciation-Mia Speaking to Group

Happy National Volunteer Appreciation Week! I would like to sincerely thank the Alzheimer’s Association, Georgia Chapter volunteers!

I’ve had the pleasure of serving as the Volunteer and Outreach Manager for Metro Atlanta for more than 5 years. During that time, I’ve met volunteers from all walks of life. Undeniably, my favorite part of my job is interviewing volunteers to get to know them better. Many volunteers come to us because of a family connection to the disease, but we also have a number of volunteers without a family connection, whom just feel compelled to support our cause. Each volunteer is unique. I’ve learned that everyone has a different reason for volunteering and I think it is important to take the time to hear what brought them to our organization. It is an indescribable feeling I get when I meet a new volunteer and his/her passion beams through.

As you might be able to tell from the photos above, I absolutely love our talented and passionate volunteers. I truly appreciate what each and every one of them contributes to the Association. Whether you serve as an Administrative volunteer, Speakers Bureau Representative, or Walk volunteer, we simply want you to know that we really appreciate your commitment. Without our volunteers, none of the work we do would be possible. Thank you.

The Alzheimer’s Association, Georgia Chapter is always in need of volunteers and there are many ways you can help. To learn more about volunteering with us, please visit http://www.alz.org/georgia/in_my_community_15009.asp .

Mia Chester, Volunteer and Outreach Manager

2014_2_27_alz_awareness_day-44

The Longest Day: June 21st

thelongestdayOn June 21, from sunrise to sunset, teams across the world will put their passion to good work raising funds and awareness for the Alzheimer’s Association.  Held annually on the summer solstice, The Longest Day is about people doing what they love to honor the strength, heart and endurance of those facing Alzheimer’s disease.   The Longest Day is held on June 21, the summer solstice. The duration of this sunrise-to-sunset event symbolizes the challenging journey of those living with Alzheimer’s disease and their caregivers.

The Longest Day is a team effort!  We invite you, your co-workers, family and friends to work together for a good cause and a good time!  Teams can choose an activity that reflects the hobbies or interests of a friend or family member facing Alzheimer’s.  Or, they can create a fun day around one of their own passions whether it’s baking, bowling, swimming, dancing…the possibilities are endless!

Each team is asked to register and raise a minimum of $1600 to advance the efforts of the Alzheimer’s Association.  Dollars raised will be used to provide vital care and support for those affected by the disease as well as fund promising research towards methods, prevention and one day, a cure for Alzheimer’s.

For more information or to register your team, please visit alz.org/thelongestday.  We look forward to having you join us for The Longest Day!








No more excuses!

supportgroup

 

The following is an excerpt from the book, The 36-Hour Day, by Mace and Rabins. This is a book that we at the Alzheimer’s Association frequently encourage folks to purchase from us, or from their favorite book-seller because it’s an excellent reference for caregivers. We do not encourage caregivers to read it cover to cover after a diagnosis is made – that can be much too overwhelming. Instead we encourage them to think of it more like an encyclopedia for dementia, where they can look up specific concerns or stages as they arise. I particularly like this except because as much as I want to let caregivers off the hook (because they have the hardest most never-ending job in the world!), many caregivers make a lot of excuses for not attending a support group. Here are some of them and some suggestions for getting past the excuse and into a position where you can get the support you need and deserve.

I’m not a group type of person. The families we know say, “Go anyway,” even if this is the only group you ever attend. These disease are so terrible and last so long that our usual methods of coping are not sufficient. We all can use suggestions on how to cope. Just hearing that someone else deals with similar problems can renew your energy.

I can’t leave the person who has dementia. Fatigue can lead to inertia. It is easier just to stay home than to find a sitter or to put up with the objections of the person who has dementia.*

I can’t talk to strangers. The people in support groups have faced similar problems and won’t remain strangers long. If you are shy, just listen the first few times.

I can’t drive at night. Ask the group leader if someone can pick you up. Although problems like these are real concerns, letting them keep you from getting the support you need indicates your depression and fatigue. There are ways around these problems if you are determined. **

Sometimes a particular support group is not right for you. For example, if all the members have their family member at home and yours is in a nursing home, you may feel as if you don’t fit in. Many areas have several support groups;visit another group, or attend a chapter meeting and ask around for a group that has concerns similar to yours.

Support groups aren’t for everyone. Some people do not need the extra support these groups give. Others find it more comfortable to talk individually with a a knowledgeable person. Before you decide you don’t need to attend a support group, we urge you to try one a few times. ***

 

*The Alzheimer’s Association, Georgia Chapter offers a telephone support group for folks who have trouble getting out the house because they are caring for a loved-one. Call us at 800-272-3900 for more information.

**Again, call us for information on our telephone support group OR find a group that meets in the day-time from our list: http://alz.org/georgia/in_my_community_support.asp

***If you prefer one-on-one support, we also have a peer-to-peer support program called A Time to Talk – call us and ask about this program at 800-272-3900

 

The 36 Hour Day

The 36 Hour Day

“You have Alzheimer’s…Come back in six months”

2_4_diagnosis

I sat in my office on a crisp, cold day in January listening to “Sally*”, a 70 year old woman who had just been diagnosed with early stage Alzheimer’s disease over the holiday season.    Recently, Sally had some tests done, a couple of scans, and after the results came in her doctor simply said:  “You have Alzheimer’s Disease.  Here is a prescription for medication and lets do a follow-up appointment in 6 months.”  Sally was devastated.

What now? Sally did not know much about Alzheimer’s disease and was unsure of the steps to take next.  Unfortunately, more and more people are being diagnosed with early stage Alzheimer’s and Sally’s experience at the doctor is the norm.   People are getting diagnosed earlier, but they are not getting the much needed information and tools to help them deal with their diagnosis.  Those with early stage Alzheimer’s and dementia are often left to cope with the reality of their illness on their own, and usually without much understanding.  Many important life decisions can and need to be made while one is still in the early stages of the disease.  Care choices and wishes for the future, driving safety and financial and legal matters are only some of the issues that need to be addressed for someone with an early diagnosis.  Having a basic understanding and knowledge of the disease and its process can help many who are suffering with fear, anxiety, and the unknown. Many people try to deal with their diagnosis alone and keep it hidden, although they don’t have to.

Sally reached out to the Alzheimer’s Association and found the help and guidance that she needed.  Sally has participated in several care consultations as well as attended the Living with Alzheimer’s disease for those with early stage Alzheimer’s.  Sally has also realized that she still has quality of life and will continue to stay active and involved with her church, community and family.  Early Diagnosis does not mean life is over; early diagnosis can actually improve quality of life and bring new meaning and purpose.  Don’t hesitate to reach out for help.  The Alzheimer’s Association is here for you 24 hours a day, 7 days a week.  You don’t have to walk this path alone. Call us at 800-272-3900 to speak with a counselor today.

*Name has been changed to protect identity

Family Caregiver Education Programs!

Professional healthcare workers and caregivers, like nurses, certified nursing assistants, social workers, etc; often times receive dementia training through their employer or as part of their annual certifications. But what about family caregivers? Where can they go to receive similar training on dementia basics, behaviors and safety issues?

Here! Okay, not here here – not on the blog – but here in Georgia! Throughout the year, the Alzheimer’s Association offers family caregivers training on a variety of topics, around the state. Caring for a loved one or family member is a much different experience than caring for someone as part of your career. Family care involves a whole different set of challenges for both the caregiver and care recipient involved.  We want to help prepare you for some of those challenges and we also hope that you’ll meet other caregivers with whom you can connect.

To see our list of upcoming classes and get information about registering, visit us on our website: http://alz.org/georgia/in_my_community_education.asp .

We're ready to field your questions at our next education class or program!

We’re ready to field your questions at our next education class or program!

Slaying the Dragon

This image of The Dragon Slayer found on Countocram at: http://countocram.deviantart.com/art/the-dragon-slayer-42594602

This image of The Dragon Slayer found on Countocram at: http://countocram.deviantart.com/art/the-dragon-slayer-42594602

I’d never thought of myself as a dragon slayer before, but when I consider what I enjoy most about my work at the Alzheimer’s Association, Georgia Chapter, it seems a fitting metaphor.

What dragon do I get to slay on a regular basis? The dragon of ignorance. I teach family caregivers about the dementias, about behaviors that accompany dementias beginning in about the middle stage of the disease, and how to communicate more effectively with their loved one who is losing the ability to remember, reason, understand, and speak.

I can’t tell you how many families get a diagnosis of a dementia – Alzheimer’s, vascular dementia, dementia with Lewy bodies, fronto-temporal dementia (to name just the most common forms) –  and have little or no idea how important it is to learn about their form of dementia and how to manage the care of their loved one.

To combat the disease of ignorance, I get to go out into the community, or conduct a series of classes here at the Chapter offices to help caregivers understand what is happening to their loved one, and help them to develop effective strategies for coping with the changes.

My favorite weapon for slaying the dragon is the 8-week class series, Living with Alzheimer’s for the Caregiver. During these 8 weeks, I have the pleasure of bringing caregivers into the light of confident, competent caregiving in meeting the challenges in each of the 3 stages of the disease: early, middle and late. During the series, we weave ourselves together into a supportive group of friends. Along the way of learning, we laugh, and we enjoy one another’s company while appreciating each one’s struggle to provide the best possible care for themselves and their loved one.

Today, a caregiver asked me if I haven’t heard it all and if I don’t get weary of the stories. I told him: “Yes, it’s true that I’ve heard many stories. But I’ve never heard your story. And it’s your uniqueness that keeps me alive and present.” Alive and present to slay one more dragon on his behalf!

Sarah Carson

Sarah Carson is a Licensed Clinical Social Worker who has been with the Alzheimer’s Association, Georgia Chapter for nearly twelve years.