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

November-December 2014

Vol 5, Issue 6

Caregiver

Network

News

A newsletter for

caregivers of loved ones

with memory loss

November is

National Family Caregiver Month

as well as

National Alzheimer's Disease Month.

Hug a caregiver today!

What NOT to Say to

an Alzheimer's Caregiver

We've all done it. We've all carelessly said the wrong thing without realizing it. We didn't mean to be hurtful or uncaring, but that's sometimes how it came across. We may have had the very best of intentions, but we simply didn't get it.

It's true what they say: You really can't understand a person until you've walked around in his shoes. Similarly, until you've been a caregiver for a loved one with a memory disorder, you can't understand the frustration, grief, loneliness, exhaustion, and heartbreak they live with every day.

This doesn't mean that you should avoid them. On the contrary - caregivers' lives are already isolated enough, and it only gets worse as many of their friends and family gradually drop away. It's a conundrum for both sides: at the very time that they need it the most, many caregivers find little support. And at the very time that family and friends want to reach out, they all too often hold back simply because they don't know what to say.

Talking about dementia can be uncomfortable for a lot of us. Perhaps what's needed is a primer on what to say and, more importantly, what NOT to say, to an Alzheimer's caregiver. So here are a few guidelines, compiled from those living in the trenches:

1. "He looks just fine to me!"

This is the prizewinner, the all-time heavy hitter of things NEVER to say! A person in early stages of dementia DOES look perfectly normal - this is what makes the disease so hard to recognize and diagnose. Furthermore, he can be adept at covering up his lapses, so if you're with him only briefly, it's likely you won't pick up on a lot of the changes. But just because he can still walk and talk and read and appear basically normal, it doesn't mean that things are the same on the inside.

What to say INSTEAD: "It's great to see him looking so good, but I know there's a lot going on that I don't see."

2. "Does she still know you?"

Why do you need to know this? Is it a measurement of how severe the dementia is? If she still recognizes me, does that mean the disease isn't serious yet? It's true that some persons with dementia progress to the point that they don't recognize familiar faces, but many never reach that point. Why bring it up to me? If she doesn't recognize me, then it's painful for me to have to say it. If she still does, it's painful for me to consider that there may come a day when she won't. Leave it alone.

What to say INSTEAD: "She is lucky to have such a loving son/daughter/husband."

3. "I know how you feel."

Actually you probably don't, not unless you have gone through the exact same thing I'm dealing with. Even if you have cared for a person with dementia, your experience was different from mine. I appreciate your attempt at empathy, but it doesn't help me when you presume to know how I feel.

What to say INSTEAD: "I know this must be terribly hard."

4. "He's too young to have Alzheimer's! Maybe the doctors are wrong."

Don't you think we've already thought of that? Do you know how many months/years we've been dealing with this, how many doctors we've been to, how many other things we've tried? Getting a diagnosis of Alzheimer's was hard at first, but we're learning to live with it. And one of the things I've learned is that it happens to younger people, too.

What to say INSTEAD: "I know you're relieved to finally have a diagnosis so that you know what you're dealing with."

5. "Did you see this article that coconut oil/Vitamin B/walnuts/whatever can cure Alzheimer's?"

Thanks for your interest, but a week hardly goes by that there's not something in the news about that. I read them all and have asked our doctors about a lot of them, but to date there's nothing that they can recommend that we aren't doing. Please know that we do keep up with current research, but that we are using all our energies to stay positive and maintain as normal a life as we can.

What to say INSTEAD: "There's a lot of information out there on this disease. I hope they find a cure soon."

6. "Just let me know if there's anything I can do to help."

Thanks for offering, but the problem is, I am so overwhelmed with all of this that I just can't think of what to ask you to do. If you wait for me to come up with something, chances are that I never will, but that doesn't mean that I don't need your help. Besides, I'm never sure how much people really mean it when they offer. I don't want to risk our friendship by asking you to do something you'd feel uncomfortable doing, so I usually just keep quiet. But please know that even little things mean more than you can know.

What to say INSTEAD: "Let me come sit with Bob on Tuesday afternoons while you attend your support group," or "I'd like to bring dinner to you next Monday night," or "How about if all the neighbors come clean up your garden for the winter?" or "Even though Jim doesn't play golf with our group any more, we'd still like for him to join us for lunch on Fridays," or "I can pick Jane up from the adult day program two afternoons a week." Get the idea?

There are over 15 million people in the United States caring for persons living with dementia, so it's a good bet that you know at least one of them - and your risk is increasing every year that you'll be one, too.

Now that you know what NOT to say to them, don't wait - call or email or send a note today to let them know you're thinking about them. Because the worst thing you can say to them is nothing.

The ABCs of DEMENTIA

Part 5

O is for Onset

Although it's difficult in most cases to identify exactly when dementia symptoms begin in a person, there are two general classifications of the disease that are based on age: Early-onset and Late-onset. A person is said to have Early-onset Dementia when his or her symptoms begin before age 65. Early-onset is a rare form of Alzheimer's Disease, accounting for about 5% of those who have been diagnosed. The more common form of dementia is Late-onset, which occurs in people over age 65 and which accounts for the majority of diagnosed dementia cases. Risks for Late-onset Dementia increase with age, rising to around 30% at age 85 or older. "Early stage dementia" is often mistakenly referred to as "early onset," but they are not the same thing. "Early stage" is simply the earliest phase of the disease, and can occur at any age, whereas "early onset" is applicable only when symptoms started prior to age 65.

P is for Planning

Many families are living with a loved one in some stage of some form of dementia, yet may never have received a definitive diagnosis. Sure, Mom or Dad may be having some memory problems, but they're still living at home and except for the occasional blip, are mostly managing just fine. A husband or wife may not be keeping up with their usual activities, but their spouse is there to take up the slack. Everything seems under control, and all those legal documents like Wills and Powers of Attorney were put in place years ago. But what families don't realize, often until it's too late, is that those documents were done before any of the players got dementia. Now things have changed: for instance, take the wife whose husband now has dementia. What would happen if she is in an accident or has a stroke, and her husband needs to make decisions for her? Is he going to be capable of doing that? There may be a son or daughter standing by to help, but legal documents may need to be amended in order for them to have such authority or to accommodate financial planning for their loved one This process takes time, and problems can arise if Dad's dementia prevents him from understanding or cooperating. Many a family has experienced this, or worse, because they didn't taken into account the impact dementia can have on their best-laid plans.

Planning is essential. A dementia diagnosis in and of itself doesn't prohibit further changes as long as the attorney who draws up the documents feels confident that the person understand what's being done - but it can certainly complicate the process. So as soon as your family realizes that dementia is in the equation, make an appointment with an eldercare attorney and your financial advisor to review how things stand and what might need to be altered to accommodate your changing situation. Make sure that estate planning and advance directives (including living wills and both healthcare and durable powers of attorney) are in place and have been amended as necessary. Do it early, before the person with the disease is no longer able to participate in their care plans. Better to be too early than too late.

Click Here to visit the Alzheimer's Association's online brochure dealing with this and related topics.

Q is for Questioning
It comes with the job of caregiving: you'll question the diagnosis, you'll question the experts, you'll question your friends and family, and most of all you'll question yourself. Is this really happening or am I just crazy? Why can she do this but not that? Is he getting better? Could the doctors be wrong? Am I making the best decisions? How will I know when it's time to do something else? Dementia is an indefinite condition; there's lots of gray area that's open to interpretation. The progression in one person will be different in another; solutions that worked for one family may not work for yours. There's so much about this disease that we just don't know, so few clear answers to the questions you will ask. There's simply no one right way to make the journey. Accept that these questions will arise, but that you can only do the best you can with what you have in the moment. Trust yourself; you know more than you think you do.

(The ABCs of Dementia will be continued next issue)

Need some tips on getting through the holidays?

Click on these articles from previous issues of CNN that might be worth reading again:

Yes, Virginia, there IS a Way to Make the Holidays Easier!

(from December 2010)

Great Expectations

(from December 2011)

Have a Simpler, More Enjoyable Holiday

(from December 2012)

ONGOING

PROGRAMS

Open to the Public

MEMORYCAREGIVERS NETWORK

SUPPORT & EDUCATION GROUPS

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)

There is no charge to attend any of the Network groups,

but donations are needed to keep this program going.

Contact Chad Conaty, Director of Development and Outreach, at conaty@memorycare.org,

For more information about the MemoryCaregivers Network, 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 will be provided for caregivers of persons with memory disorders. Sessions are designed to improve caregiver understanding of different aspects of dementia care. Related presentation materials will be provided.

Space is limited so please sign up via our office in advance.

There is no fee for caregivers enrolled in MemoryCare.

For all others, there is an $85.00 attendance fee for the course.

To register, call 828.771.2219.

Course Content:

What Is Dementia?

Transitioning from Independence to Interdependence

Functional and Behavioral Changes of Dementia

Dementia Treatment Options & Risk Reduction

Maintaining Your Own Health

Dementia and Legal Planning Issues

The next series will begin Spring 2015 as follows:

Asheville Class

Every Tuesday, beginning March 10th through April 14th

3:30 to 6pm

South College, 140 Sweeten Creek Road

Led by Margaret Noel, MD.

Waynesville Class

Every Tuesday, beginning May 26th through June 30

3:30 to 6pm

Haywood County Senior Resource Center
Led by Lisa Verges, MD.

Caregiver Network News is made possible by the charitable support of donors.

It is an auxiliary program of

Our Mission is three-fold:

To provide specialized medical care to older adults with cognitive impairment;

to support caregivers with education, counseling,and improved access to services; and to provide community education.

MemoryCare relies on charitable donations for operations.

Please consider MemoryCare in your estate planning.

To make a donation, CLICK HERE.

Click this link to visit our website:

www.MemoryCare.org

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.

OTHER COMMUNITY PROGRAMS & EVENTS

(The following programs are not part of MemoryCare but help our community by serving those impacted by memory impairment. All are free and open to the public unless otherwise noted)

Calling All Gentlemen Caregivers...

...to the Men's Lunch Bunch

All men are welcome to join us for food, support, and laughter!

No advance reservations needed, just show up.

2nd Tuesdays, 11:30 am

J&S Cafeteria on Airport Road

(across from the AVL airport)

For more information, contact Woodie Dyches at 828.712.9726

or woodrow344@gmail.com

Memory Loss Caregivers of East Buncombe

An education & support group for caregivers