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

May-June 2014

Vol 5, Issue 3

forget-me-nots

Caregiver

Network

News

A newsletter for

caregivers of loved ones

with memory loss

ADULT DAY PROGRAMS -

YOU REALLY SHOULD TRY ONE!

Maybe you've used one of these excuses:

"I asked my husband if he wanted to go to an adult day program and he said no."

"My wife's not that bad yet. She'd be insulted if I took her to one of those places."

"My husband won't let anybody else take care of him but me."

"Oh, my mother would never go to anything like that."

"I took my dad there last year and he said he didn't want to go back."

"My wife will think I'm abandoning her."

Lots of caregivers felt the same way. But many of them finally tried an adult day program, and here's what they said:

"Mom loves going to her "club." I wish I had done this sooner!"

"My husband didn't want to do anything except watch TV all day. I didn't think he'd participate in anything they had, but they tell me he's one of their most active members!"

"My dad thinks he's going to "work." He feels important again. We're going to add another day each week because he likes going so much. And now I have time to do things for myself. It's made a huge difference for us."

"My wife told me after her first day that she didn't want to go back...but the staff there said she'd had a great time, and encouraged me to bring her back. After another couple of times, she got more comfortable with it, and now she actually looks forward to going. The other day she asked me, "When is Tuesday? That's the day I go help the ladies at the church."

"My husband thinks he's volunteering there. He enjoys helping all the people who are worse off than he is."

"I never thought Mom would enjoy this but she does. When I pick her up, she comes out the door smiling every time."

While a licensed adult day program does provide respite for the caregiver, it also offers more benefits for your loved one than you might have realized:

People with dementia aren't able to engage in many of the activities they once enjoyed. As a result, they can end up with nothing to do all day, and may get frustrated or depressed. Participating in an adult day program can alleviate boredom and provide opportunities to be engaged and active.
Most families aren't aware that their loved one with dementia is struggling to keep up with everyday demands. At an adult day program, the whole setting, the pace, and the entire schedule of activities have been set up specifically for persons who find it difficult to get through a normal day in a normal household. Everything is "dialed down" to a more comfortable level that is usually impractical, if not impossible, to maintain in our homes.
A good program will have experienced staff who can usually handle all but the most extreme symptoms of dementia, including incontinence, delusions, and anxiety. They will work with the family to find creative ways to introduce their loved one into the program so that it becomes a successful experience for everyone.
Who wouldn't want to go to a place where there's always someone to pay attention to you and cater to your preferences?!?!
By allowing your loved one to spend a day or more a week in an adult day program, you are giving both of you the gift of being with other people. As wonderful as you are, your loved one would still enjoy seeing someone else for a change! None of us wants to see only one or two people all the time; we all need the stimulation, sense of community, and joy of human interaction.
Maybe your loved one is overly dependent on you. Maybe they follow you from room to room, and get anxious when you're not with them. Getting them used to being dependent on someone else, if only for a day, is liberating for both of you...and will make it easier for them adjust to someone else when you enlist help from another family member or professional caregiver in the future.
Research suggests that when a person with dementia attends a good adult day program at least twice a week, there are "measurable health benefits" both for the person with the disease as well as for the family caregiver.

Occasionally, despite the best efforts of staff and family, an adult day program may not be the best option. Sometimes a person, for whatever reason, just isn't a good candidate for a group program. If that happens in your situation, chalk it up to 'nothing ventured, nothing gained,' and let it go (although you might try again in another six months to a year, when the disease has progressed a little farther).

However, the successes far outweigh the failures, and odds are that your loved one will make the transition better than either of you could have imagined. Just remember, if it doesn't go smoothly the first time out, that's no reason to give up. It takes time for any of us to adjust to something new, and it's especially so for a person whose adapting skills are compromised. Get the staff's input and suggestions for how to proceed; it's likely that after your loved one becomes familiar with the process, he or she will come to enjoy the variety and scope of the activities....and then you will wonder why you didn't do this sooner!

Sandy Norbo, Caregiver Support Manager for CarePartners Adult Day Care/Day Health services in Asheville, says, "My own father attended this program back in the 1990's for about three years. I still come across old pictures of him dancing, painting, and laughing....It truly is a magical transition that takes place, with both men and women. Once a person comes to the Center a few times, [they] begin to feel safe and familiar and realize that they go home each day; they begin to think of it as their "home away from home" and really enjoy themselves. The relief it provides to the caregiver is unmatched....and with all of the other services offered, such as shower assistance, a salon for hair care, and good nutrition in the meals served, it relieves them of many of the more difficult tasks that can become overwhelming for them on a regular basis. We literally see people "come back to life" again in many instances. I honestly thought I was going to lose my mother before my father back then. We found this program, and the help it provided her made all the difference in the world."

We are fortunate to have six adult day centers in the Asheville/Hendersonville area (listed below). Fees for these programs are private pay, VA Community Assistance, Community Alternative Programs (CAP) or grants when available.

CarePartners Adult Day Services

68 Sweeten Creek Road, Asheville 28803

828.277.3399

www.carepartners.org

(overnight respite also available for those already enrolled)

CarePartners at Pardee

114 College Drive, Flat Rock 28731

828.697.7070

Congregation Beth Israel Synagogue

2 Doctors Park #E, Asheville 28801

828.253.2900

www.jcc-asheville.org

DayStay

35 Candler School Road, Candler (West Buncombe) 28715

828.665.1575

www.daystayasheville.com

KOALA

23 Medical Park Circle, Brevard 28712

828.884.2980

www.trhospital.org

Marci's Adult Day Services

5 West Oakview Road, Asheville 28806

828.702.0691 or 665.3143

www.marcisadultdayservices.com

In the MemoryCare satellite areas of Waynesville and Burnsville, the choices are:

Haywood County Adult Day Program

63 Elmwood Way, Suite C100, Waynesville 28786

828.456.9488

Heritage Adult Day Retreat

1724 W. Hwy. 19, Burnsville, 28714

828.682.1556

The Thief

Silently the thief creeps in.

Taking a small piece here and there,

Nothing to make note of - then

Greedily, a bit more and more until

Like a fog lifting, it becomes clear.

All the pieces form a picture,

One of horror and despair.

The thief is named, leaving us helpless.

Relentlessly it continues, destroying,

Taking at will, leaving us lost.

But wait - love cannot be stolen.

Love is stronger.

Love remains.

- written by a wife and caregiver

The ABCs of DEMENTIA

Part 2

E is for Emotions -

As if losing memory and functioning isn't enough, people with dementia can also become hyperemotional. Studies suggest that three-fourths of people with dementia experience depression, irritability, anxiety, or other mood swings. As the disease attacks more and more of a person's "thinking brain," their emotions are given free rein, which often results in changes to their personality. Many families say they can cope with their loved one's repetitiveness and diminishing abilities much better than they can with the personality changes that may arise. It's a common, but difficult, symptom of the disease: the person simply doesn't have the ability to control their emotions the way they once did. It may help you, the caregiver, to know that they are as perplexed and upset by it as you are.

F

is for FTD -

No, this isn't a flower delivery service: FTD is Frontotemporal Dementia, so called because it targets primarily the front and temporal parts of the brain. Unlike Alzheimer's, FTD typically doesn't affect memory as much as it does behavior and language. A person with FTD is likely to exhibit apathy or indifference to others, loss of social controls, lack of interest or judgment, excessive or obsessive behaviors, and difficulty with words (aphasia). In its early stages, it can often be misdiagnosed as depression, bipolar disease, schizophrenia, or other mental disorder. As with other forms of dementia, there is no cure, but there are strategies and approaches that can help families better manage the symptoms. Learning as much as possible about the disease and its progression , so you know what to expect, is always the first line of defense with any memory disorder.

G is for Guilt -

Guilt for losing your patience. Guilt for saying or doing the wrong thing. Guilt for feeling resentful, or embarrassed, or angry, or trapped. Guilt for placing your loved one in a facility.
The Guilt Factor looms large in the lives of most dementia caregivers. An Australian study compared twenty family caregivers who had placed their loved ones in long-term care facilities - ten of them because of non-dementia conditions (such as cancer or a broken hip), and ten because of advancing dementia. The first group expressed feelings of sadness and grief and helplessness - but the second group all expressed a different emotion: guilt. The first group acknowledged that it had been a hard decision, but that they had done the right thing. The other group, however, felt that they should have been able to care for their loved one at home, and that their decision to place him or her in a facility was an indication of failure and/or selfishness.
Caregiving is hard. It forces you to make decisions you'd rather not make, to acknowledge feelings you'd rather not have. Feeling guilty is simply a sign that you've set a high standard for yourself. Lisa Gwyther, co-author of The Alzheimer's Action Plan, says, "...only the truly responsible people feel guilty," and "...family members who are doing the most are the ones most likely to berate themselves for not doing more." Remind yourself of the months and/or years that your loved one was able to stay at home - a gift that would not have been possible except for your efforts. So know that you're in good company, and that you're doing the best you can.

H

is for Help -

It's in all the books and articles and everything you see about caregiving - "you cannot do this alone, you must have help." We are quick to offer our help to others...yet resist asking for it for ourselves, even during our greatest time of need. Caregiving is a 24/7 job; do you know anyone else who works a 24-hour job without breaks? You may have promised to look after your loved one, but you never promised you'd do it alone.
There are people out there just itching to help you, if you'd only ask: family, friends, neighbors, church and civic groups, clubs, professional agencies, support groups. Help can mean someone to stay with your loved one while you run errands, or someone to run your errands for you, or someone to take over the lawn care, or someone to clean your house, or someone to pick your loved one up from adult day, or someone to go to lunch with, or someone to bring dinner to you once a week....the list goes on. Help can be free, or it can be something you pay for. It can give you back some of your life. It can provide some variety and entertainment for both you and your loved one. It can come in small increments (an hour or two) or larger chunks (a 3-day respite). Having help can mean the difference between a caregiver who's rested and restored, and one who's exhausted and frazzled.
We all have a skewed perception of just how much we can do on our own. Not asking for help is sticking your head in the sand. Remember, "you can do anything, but you can't do everything."

(The ABCs of Dementia will be continued next issue)

COMING

EVENTS

Please join us to celebrate the publication of

THE MEMORYCARE PLAYS

winner of 2014 Independent Book Publishers Bronze Medal IPPY Award for Best Anthology!

Click Here to order a copy of the book

Thursday evening, June 26

5:00 - 6:30 pm

Includes reception followed by

a staged reading & discussion of a one-act play,

Steering into the Skid

Location: UNC Asheville Reuter Center, home of OLLI

This presentation is free, but registration is required due to limited space.

To register please call 828-274-4801. When you hear the "Cisco" message

enter extension 2249.

Signed copies of The MemoryCare Plays will be for sale at the event,

with proceeds benefitting families affected by Alzheimer's disease

or other dementias.

is a non-profit 501(c)3. Our goal is to incorporate caregiver education, counseling, and support into the evaluation and medical management of the patient. MemoryCare also provides dementia related education to our community and health professionals.

More information available at www.memorycare.org.

OTHER UPCOMING COMMUNITY EVENTS

These are not MemoryCare-affiliated programs but are sponsored by other area organizations.

Second Annual

Sacred Journey of Dementia Conference

a conference for

persons with dementia * care partners * family members * professionals * community members

Saturday, June 7, 2014

8:30am - 4:30pm

First Baptist Church of Asheville

5 Oak Street, Asheville, NC, 28801

View conference brochure at www.fcba.net, under News & Events,

or call Greg at 828.252.4781

$40 Registration Fee includes light breakfast, lunch, and snacks

MemoryCafe and Quiet Room will be available all day

for anyone needing to take a break.

Adult care provided at no charge by Home Instead Senior Care.

(Free child care for children under 13 also available)

For more information, contact Jane Sherman at 845.641.4680 or janeshermanLLC@mac.com

sponsored by:

First Baptist Church of Asheville

Home Instead Senior Care

Land of Sky Regional Council

Memory Loss Collaborative

Unitarian Universalist Congregation of Asheville

CAREGIVER CALENDAR

MEMORYCAREGIVERS NETWORK

SUPPORT & EDUCATION GROUPS

* Open to the Public *

There is no charge to attend, but donations are always needed to keep our program going!

FLETCHER 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

828.230.4143

network@memorycare.org

Pat Hilgendorf

828.645.9189

patricia.hilgendorf@gmail.com

"CAREGIVER COLLEGE"

MemoryCare's ongoing educational series for caregivers

A series of 6 two-hour lectures for caregivers of persons with memory disorders. Sessions are designed to improve 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. For all others, attendance is $85.00.

Course Content:

What Is Dementia?

Transitioning from Independence to Interdependence

Functional and Behaviorial Changes of Dementia

Dementia Treatment Options

Maintaining Your Own Health

Conclusions/Guest Speakers

The next series will begin this fall.

Contact office@memorycare.org or call 828.771.2219 for further details.

OTHER COMMUNITY SUPPORT SERVICES:

(These are non-MemoryCare programs that are sponsored by other area organizations.

MemoryCare deeply appreciates their work, and provides this information as a courtesy to the community at large. Please visit www.memorycare.org

for a more complete listing

of local support services)

Memory Loss Caregivers of East Buncombe

An education & support group