Volume 2, Issue 19 - The Ribbon Newsletter

Volume 2, Issue 19
October 1, 1999

Welcome to Autumn!! This is my most favorite season. I love the colors and feeling the crispness in the air. I'm still keeping my fingers crossed that we will have beautiful foliage to see this year. I'm afraid that doing without rain for so long will not let that happen. I can still enjoy opening my windows and letting the breeze blow through, so that will have to do for this year.

Communication Do's and Don'ts
for the Middle Stage
by MaryLou Byrnes
Help Line Specialist

Families often discover communication problems as Alzheimer's disease progresses. Changes in the brain make selecting appropriate words, matching objects to their use or following the simplest of instructions difficult. Changes in language ability can cause withdrawal from social situations because the person becomes self-conscious about these losses. Here are some coping strategies and communication techniques to replace lost abilities:

Do:

Keep everything as simple as possible
Remain calm and pleasant
Give instructions one step at a time
Give her/him only simple tasks to perform
Expect him/her to ask the same questions repeatedly
Ignore things she/he does which annoy you
Pay special attention to maintaining and promoting individuality, independence, freedom and dignity.

Don't:

Give him/her too much responsibility
Give him/her too many choices - it is too confusing
Expect him/her to identify certain words, names, things, etc.
Give him/her instructions and then expect them to be carried out perfectly
Expect answers to your questions to be accurate
Get irritated when she/he asks the same questions over and over
Take his/her behavior personally

Alzheimer's Association, Greater Pittsburgh, June-July 99 Newsletter

OnHealth: Alzheimer's Disease

JANUARY 27, 1999

Simple Stress-Reducers for Alzheimer's Caregivers
By Marcia Barinaga

Losing a relative to the slow mental degeneration of Alzheimer's disease is something everyone fears. With good reason: With millions of Alzheimer's cases in the United States alone, and fully 50 percent of people over 85 showing some signs of the disease, caring for a spouse or parent with Alzheimer's is a possibility nearly everyone could face.

It's an arduous task to anticipate. Most families want to keep their loved one at home for as long as possible, but the toll on family caregivers is huge. More than 75 percent show signs of serious depression themselves, and caregivers fall sick with serious illness at a much higher rate than their peers. Alzheimer's patients need constant care, 24 hours a day, says Duke University social worker Lisa Gwyther, but "nobody can do that by themselves without wearing out, or losing it." Yet most people in that position don't get the support that can help them keep from burning out. "There are a lot of barriers between people knowing what kind of help they need, and getting it," she says.

The key, according to the hopeful results of recent research, is for caregivers not to wait until they are at wits' end. Instead, they should start early to use services available in their communities, which range from counseling to adult day care. Research is also revealing simple skills that caregivers can use in dealing with Alzheimer's patients. These techniques can reduce the most troubling symptoms, make life less stressful for patients and family caregivers, and improve care at nursing homes as well.

Just how effective support can be was shown by a New York University study published in the Journal of the American Medical Association two years ago: Spouses of Alzheimer's patients enrolled in a support program were able to delay putting the patients in nursing homes by a full year, compared with those who didn't receive the support. Key elements of the support, says epidemiologist Mary Mittelman, who conducted the study, were having social workers always on call to answer questions and deal with crises, and making sure that other family members were emotionally supportive and ready to help out.

One easy way for family caregivers to get relief is to take the patient a few times a week to one of the adult day-care centers available in many cities, says psychologist Steven Zarit of Pennsylvania State University. Zarit and his colleagues reported in the Journal of Gerontology and Social Sciences last September that caregivers who used day-care centers showed significantly less stress, anger and depression than a control group.

Day care not only provides a break for the caregivers, it adds spice to the patient's life as well, says New York University psychiatrist Barry Reisberg. After initial fears similar to those of children on the first day of school, Dr. Reisberg says, "patients are very excited about getting on the bus and going to the center. And when they come back at the end of the day they have a lot to say to their family. It sounds a lot like school."

Indeed, it can be helpful to think of an Alzheimer's patient as someone traveling backward through the stages of childhood. Children begin to walk and talk at one, learn to control their bowels at 2 and bladder at 3 or 4, learn to dress and bathe at 6 and pick out their own clothes at 7. Alzheimer's patients regress through these same stages, losing the skills gained a lifetime ago in faithful reverse order.

Unlike a child, of course, the Alzheimer's patient is forgetting rather than learning at each stage. But in some cases the forgetting can be slowed. "Things like dressing and eating can be lost simply because they are not used," says Cornelia Beck, a nursing researcher at the University of Arkansas. Studies by Beck and others have shown that Alzheimer's patients can temporarily relearn skills appropriate for their developmental age, and that the retraining slows the decline into helplessness.

For example, Beck showed that patients who have forgotten how to dress themselves can relearn with coaching. Rather than just dressing the patients, nursing-home aides participating in the study used cues, such as suggesting that the arm goes in the sleeve, lightly touching the patient's arm, or mimicking the action of putting their own arm in the sleeve. After six weeks of coaching, 75 percent of the patients improved their ability to dress themselves.

Other Alzheimer's researchers have had success with a toilet-training method first developed for retarded children, called "prompted voiding," in which the caregiver asks the patient every few hours whether he needs to use the bathroom. Patients treated this way retained control of their bladders longer than those who had to ask to use the bathroom on their own.

Helping patients hold on to simple skills helps fight depression in patients and their caregivers. Another good way to ward off depression, says University of Washington psychologist Linda Teri, is to adapt activities the patient used to enjoy for his or her present mental abilities. For example, a crossword lover may still be able to do children's crosswords.

Psychologists also have worked out the best ways to handle some of the behaviors that make Alzheimer's patients frustrating and difficult to care for.

"Often what tips the scale for the caregiver's health, particularly mental health, are behavioral problems," says Gwyther, the social worker. Caregivers who are trained to handle common behavioral problems feel less helpless, are less depressed and can keep their loved ones at home longer.

The hard job is to break a lifetime of interpersonal habits that are based on memory. Punishment and reward, for example, don't work with Alzheimer's patients, because they can't recall what they did right or wrong. Even if dressing or bathing are done the same way every day, Alzheimer's patients can't remember from day to day what comes next. So it helps if caregivers always announce what the next step is.

One deceptively small annoyance that can often push caregivers over the edge is the habit Alzheimer's patients have of asking the same question over and over again. "If the caregiver snaps, 'You just asked me that question, why can't you remember?' the patient gets more upset, and the caregiver gets more upset," says psychologist Zarit. "But if the caregiver recognizes this as part of the disease and can respond calmly, giving the answer and maybe then distracting the patient, it's not a big problem."

Indeed, distraction is one of the most useful tools in caring for Alzheimer's patients. "I tell people, don't argue, don't confront," says social worker Gwyther. "Reassurance always works. Distraction always works."

Some situations are easily defused with physical tricks. For instance, it's common for a caregiver to try to guide a patient out of a chair by the elbow and find that the patient grabs the arms of the chair in an apparent refusal to get up. New York University neurologist Emile Franssen found that the problem is due to an involuntary grabbing reflex. It's "an inability to cooperate rather than an unwillingness," says Dr. Franssen. Instead of struggling and upsetting the patient, the caregiver can release the grip by gently stroking the back of the patient's hand.

Finding such simple explanations for troubling behaviors can relieve stress for everyone involved. Other researchers are looking for the reasons behind so-called "agitated" behavior such as screaming, wandering or rummaging through people's belongings. In the past, nursing homes have treated agitation as "a psychotic sort of behavior or a nuisance that comes with dementia," says psychologist Jiska Cohen-Mansfield, of the Research Institute of the Hebrew Home of Greater Washington. "Their response was either psychotropic drugs, restraining or ignoring. It made life pretty miserable for everybody."

Cohen-Mansfield believes these behaviors have specific causes. Patients who scream, for example, generally do it at night or when they are alone, suggesting the screaming is caused by fear or loneliness. Cohen-Mansfield found that having an aide come by and talk with the patient for a few minutes, or showing patients videos of family members talking to them, or playing music they used to love, calmed them and reduced their screaming. "Even though they seem so demented, they have some of the needs we all have for social support and interaction," says Cohen-Mansfield.

Work like Cohen-Mansfield's is transforming nursing homes from the dreaded warehouses of earlier days. So while knowledge and support may help you keep a loved one with Alzheimer's at home longer, when the nursing home becomes unavoidable, finding one that practices some of these techniques may make that step less traumatic as well.

From BigtreeMur

It is always so good to get your newsletter. I run a support group out of my home for caregivers and recently faced the loss of two of our family members to this disease. The group meeting went far beyond our normal two hours and centered about the anger these family members hold over the way they were treated by friends, family, professionals and uninvited strangers over their care choice to keep their person home. While they have no regrets over the efforts they had to make they both felt a sense of completion and oneness being able to share in the final moments of their family member. And that needs to be supported as well as valued by all of us. As one woman put it, I am so sick and tired of being treated as if I am crazy for wanting my mother to remain in the midst of a family that loved her.

I recall my own experience when Tom died. My own sister tried to fix me up on a date less than three months after my husband passed. She felt it was time for me to get on with my life and she couldn't understand that I did not see him has already dead long before he died. One church member said the following to me: "I am sorry for your loss, but.....I never knew Tom when he wasn't walking into walls." I remember responding to her with this: "Well Tom never walked into walls because I made sure he didn't, but thank you for you condolences anyway." I can't imagine receiving that sort of comment had my husband died of any other disease.

This is the only disease in which caregivers are encouraged to give their care up to institutions almost from the moment of diagnosis. And that is because society places no value on people who lose their thinking process. They are regarded at dead long before the event happens and this not only serves to devalue their innate human quality, it serves to devalue the care we give them. People in comas get more respect than do our family members. I have compiled the following list in an attempt to educate both professionals and those who otherwise surround us with the empty cliches that are meant to help, but which don't. I also have this list available on my Web Page: www.bigtreemurphy.com.

I am currently working on the coda to my book. "He Used To Be Somebody." Tom died one month after the book was published and countless readers have written to ask me about his passing and how things turned out with his family and the trust. I will be posting this final chapter on my Web page beginning in January. It will be titled: "The Shadow of his Smile." I hope your readers will feel free to tap in.

Twelve Things Not to Say to a Caregiver!
by Beverly Bigtree Murphy, MS, CRC ©

Too often the words we resort to, in our attempt to comfort people facing the challenges of Alzheimer's, amount to little more than empty cliches. These cliches evolve out of a lack of knowledge of the disease process and a pervasive bias that tends to devalue those who have this disease. To lose thinking process is to become nothing more than a burden in the minds of too many and those attitudes spill over onto their caregivers. After all, what value is there in caring for someone who is viewed as valueless? It is time to reevaluate the accepted jargon and discard the empty cliches. They offer little comfort and they only serve to undermine the caregiver who faces very real care issues and decisions, not the least of which is the desire to preserve the dignity and the essence of their family member in spite of a very cruel disease process. I would like you to think about some of these statements before you use any of them. More important, I want you to feel passionate enough to challenge others when you hear them used.

1. "The Burden of Caregiving."

Webster's Dictionary defines Burden as: "That which is borne or carried; a load. That which is borne with labor or difficulty. That which is grievous, wearisome, or oppressive; as, my burden is greater than I can bear. The carrying of loads; as, a beast of burden." The phrase: "The Burden of Caregiving," is used almost exclusively to describe the care of our elderly. Every time the word 'Burden' is used in relationship to elder care, a negative image is being imprinted on the conscious mind. Rather, use the word challenge in its place. Child rearing is a challenge! The care of our elderly is a challenge! Caregiving in any form is a challenge! We have to stop denigrating the care of our elderly as being something out of the ordinary. Our elderly deserve the same regard and love, as do our children who are just as dependent upon us for help.

2. "Lets face it none of us want to be a burden to our children."

None of us want to burden to anyone. We all hope to die without needing someone else to care for us. And while this is a universal desire, the fact remains that few of us will have that luxury. Most of us will need to be tended to by someone else before we die. Whether that someone else is a family member or a paid caregiver is the reality families dealing with this illness face. What is too often offered by the 'helping community,' where Dementia patients are concerned, is an almost cavalier approach to this question, the justification being that our Alzheimer's people don't know who we are anyway, so why would our care matter? In a recent newsletter published by the Rehabilitation Counseling Association, it was offered that it does matter. Those of us in the professional ranks have an obligation to consider the wants of a dementia patient with the same fervor as we defend the wants of those who still have their thinking process.

3. "No one should have to sacrifice their lives for another."

Caring for another human being is about unconditional love it is not about being a patsy. Those of us who take on the challenge feel that it isn't a sacrifice in the negative sense of that word. Our caring is about commitment and obligation. Whatever our reasons, they are ours to live with. They not for anyone else to judge.

4. "Your family member would never want you to do this for them, they would want you to get on with your life."

I actually heard this said to an 85 year old man who had just put his wife of 60 years in a nursing home. The support group leader failed to relate to the grieving he was feeling and the comment she made only angered him. It certainly didn't have the calming affect she expected. Besides, just what does 'getting on with your life' mean to a man who has spent 60+ years in a marriage to a woman who is still alive? What does that comment mean to any of us who are caring for a family member with this disease? That statement is little more than an admonishment towards those of us who continue to care for our people, after their thinking process has diminished. There is nothing inherent that offers comfort in those words.

5. "Don't feel guilty. You've done everything you can."

I don't think guilt is the word to be used. I believe people are constantly dealing with grieving issues with this disease. Caregivers experience 'little deaths' every time their family member experiences a loss in functioning. The tears, the anger, the frustration that is expressed in these circumstances evolve out of a sense of loss and knowledge that the losses will continue. Caregivers need options and encouragement and permission to feel what they feel. They need a willing ear. What they don't need are mindless cliches.

6. "Your family member should be in a nursing home. Its better for them."

Too often this is the only option offered a caregiver as if you drive 'them' up and drop 'them' off and your obligation is over. Unfortunately, institutionalization isn't any option for vast numbers of caregivers because of the financial requirements and to offer this solution in place of other options and tools is to offer no solution at all. Furthermore, those who do opt for the nursing home choice, find their caregiving, their obligations, their involvement, is anything but over. If anything their care is more complicated because it is now transported to a place that is foreign in feel with foreign noises, smells, and atmosphere in order to be a continuing presence in their family member's life. Placement is not a simple matter for family members who not only have feelings of obligation and failure to deal with, they also have grieving issues that aren't resolved because no one seems to recognize grieving when they see it. Nursing homes serve an important need. They are there for those who cannot be cared for at home. Caregivers must be allowed exploration of all the care options when they ask for help. In this way there is less separation trauma should nursing home placement become real.

7. "It is so hard watching someone lose their dignity."

Dignity is in the eyes of the beholder and has nothing to do with whether or not a person can dress, feed or toilet themselves. Those are simply tasks. They are not a measure of a person's worth as a human being.

8. "You will want to remember them as they were, not as they are now."

This is used as an excuse to justify not visiting an elder frail member of the family. Generations of people before us shared the aging and death experience with their elders. They saw it as a continuum of the life cycle, without any known perversion of their memories of happier times. We respond to what we are told to expect. If there are no expectations for connection, none happen. However, vast numbers of us experience a sense of completion and peace by being able to share with our family members, regardless of the extent of the illness. Sharing the dying is a right of passage, a necessary part of our personal growth, and our role in helping our family member meet their transition with dignity and grace.

9. "Why visit 'him' so much, he doesn't even know who you are anymore."

I maintain that as long as we know who they are, that is what really matters. If you do nothing more than nurture and tell them you care about them, you have filled your obligation as a human being. We don't wrestle with these issues in working with infants. We have even learned that people in a coma benefit from the presence of their family members. We also know that infants die when they are denied nurturing. Are our elders, particularly those with dementia, less needful of human contact, touch, and tender loving care? Loneliness is not something that disappears with a diagnosis of Dementia.

10. "You should get out more often."

Isolation, lack of money, loss of friends, often leaves the caregiver with no where to go. It is an easy solution that is often tossed off by well meaning helpers who haven't stopped to recognize that unless the family member is taken care of, the caregiver is trapped. They aren't going anywhere. The advice needs to be given along with options about volunteers, respite opportunities, information on day-care, ways to edge back into filling up time away from caregiving and a friendly face willing to give the caregiver a break.

11. "Enough about your family member, I want to know how you're doing."

The primary caregiver and the family member become entwined in ways that are often not recognized or valued by outsiders. There is a bond that forms that is very deep and often very complex. When well meaning helpers exclude the family member in their attempt to focus on the caregiver's needs, that exclusion often serves to isolate the caregiver even more.

12. "You must be so relieved its over." (After the family member has died.)

A caregiver who has lived through a long-term illness with a family member is still going to experience mourning when that person dies. The grieving process they face may be different from those who face sudden death, or the death of a child, but the loss is just as deep. To diminish this event is to diminish their effort.

In Passing: Those We Must Remember

From Indy Deb

I am sad to report that Mother passed away Sept. 10. I can't begin to express how much receiving the Ribbon has meant to me. Thanks to you and everyone who is involved in caregiving. It was difficult to get to chat rooms in the last few months, but the times I did meant so much. So much love and support works for the caregiver as much as our love and support works for the person in our charge. I thank God I was able to have Mother with us this last year. Knowing I did my very best to help her have some quality of life is now the thing that helps me get through this loss. I hope I can give back to others all that I have learned during this most difficult episode in my life. Bless all of you.

Happenings

CBS Movies | Sneak Preview

This Sunday, October 3 on CBS at 9pm EST the movie Forget Me Never will be shown. The movie is made from the book by the same name, written by Diana McGowan who is diagnosed with Early-Onset AD. She happens to be a friend of the support group and I urge everyone to watch and record for watching in the future. It may help us all have some insight.

E-Mail Bag

From ERobert789

This is the first time I have written and wanted some advise on how to deal with a most difficult situation.

I'll try to make this short.

My mother-in-law was diagnosed with AD 4 years ago. We believe she has had this for about 7-8 years. Her condition has deteriorated to the point that she can no longer live alone. My husband is an only child and he, myself and our four children have been helping her as much as we can. She was always very independent and has become quite paranoid, and refuses most help. We tried hiring help to come in - she refused to let them in. We tried hiring someone to help take care of her house - she refused to let them in.

When she recently sold her house - without realizing what she had done - we took her to several Assisted Living facilities and she said she was not ready for that - she just wanted to travel for a year or two. We told her fine (though we knew this was impossible) and told her she would need to have a place to come home to. This worked and she helped move her things in to a two room Assisted Living facility near us. She seemed to be adjusting okay, eating better, getting her medications regularly and sleeping better.

Then, out of the clear she called some relatives in another state without us knowing and told them she was not happy in this "old person's home" and demanded that they come and get her. They did. In the middle of the storm last week (Floyd). They moved her without our knowledge to Virginia and are coming back up next week to move her furniture.

We are just dumbfounded by this. This niece and sister in law see her about 3-4 times a year and we believe they care about her - but also believe they have an unrealistic assessment of her condition and needs. They are telling her that they will find a better place for her in Virginia and of course, because they are doing what she wants, she refuses to talk to us at all and says, through them, that she wants to stay in Virginia because the people are nicer there.

How do you deal with outside influences and interference. My husband is just about ready to lose it all because just when he thought things were at least coming together and he could get back to a semblence of normalcy this happened.

We do not believe this is good for his mother and also know without any doubt that she will not stay in Virginia - she never has been able to stay with this aunt and niece for more than a week at a time - and as soon as they "place" her in an "Independent Living" facility, which is what they have found for her, she will be ready to come back to Maryland.

Any suggestions, or advise.

Thanks and sorry this is so long.

ERobert789@AOL.com

From NancCall

Just want to say thank you again for the Ribbon. I took the last issue ot my Caregivers group and they like it a lot. Was the issue about the stages of dementia and they found it very helpful.

Congratulations to the new grandparents. Great to hear some good news.

My uncle, Ben Pigotti, passed away on Sept 18. The family was with him. He suffered with dementia for 6 years. My aunt was his sole caregiver and devoted herself to him.

My Mother is in early stages and is so hard to see her so forgetful and confused. She is living with us but still owns her house. We lost my Dad in Feb of 98 and I can't bring myself to suggest she sell her house after these huge losses in her life.

We go from day to day doing the best we can sometimes feeling we have no idea of how to deal with this. I am an only child and my husband and I are the only caregivers. Is always helpful to read the Ribbon and know we are not alone.

Nanc

From B315

Thanks for another really meaningful issue of The Ribbon. In the e-mail section, Weather 91 brought up the use of the word "Caregiver." Somehow I do not feel that it is an appropriate title for me in spite of the fact that I am giving care 24 hours a day, seven days a week to my husband. I am a wife. My wifely duties include, among numerous other things, cooking, dishwashing, roadrunning, shopping, cleaning, administrative work, sewing, decorating, and taking care of the details of my husband's life which now includes nursing. If each task I perform as a wife had a separate title, it would be cumbersome. To single out one activity and give it a special title excludes many other related tasks. For those other than wives, such as children, sisters, etc., it is probably a very good title, but for a married woman, a title is not necessary because taking care of her ill husband falls under the job description of "Wife." B315

From ESKIMODEE

WHAT'S IN A NAME????? Personally CAREGIVER suits me fine! As a matter of fact, those people who cannot understand why I don't have much of a social life will stiffen up when I mention "Because I'm a CAREGIVER"! And those who mistakenly say I "babysit" become quite uncomfortable when I say "No, I care-give!"
To my Mother, I am her "Kid"; to my little brother, I am "honey or sweetie-poo"; my sister calls me "Dee" as do the only four friends I have left! My useless older brother refers to me as "The Queen!" HEY! call me whatever you will, but I have been given a responsibility, a gift from God to help another....I AM A CAREGIVER!!!!!

ESKIMODEE

From NANNAEDY

hi,
instead of caretakers how about: THE SAFEPLACE KEEPERS. I always call my daughter my safeplace in life. My dad had the disease and I pray I don't have it as I age. Most times he didn't know who I was just that I belonged to him and he felt safe. One day i was his mother, sister wife once even his son in his mind but I was his.....safeplace.
love yah nannaedy

From JDunn56760

THANK YOU FOR ALL THE ISSUES OF THE RIBBON AND OF COURSE THE CHAT GROUPS THAT ARE NEEDED FOR THE CAREGIVER TO SURVIVE WITH A HEALTHIER ATTITUDE. MY HUSBAND HAS BEEN IN A HOME FOR ALMOST 6 MONTHS AND IT WAS A HARD BUT NECESSARY MOVE. HE IS GETTING BETTER CARE FROM HIS CAREGIVERS THAN I WAS GIVING AT HOME AS I WAS ONE PERSON AN ANGRY PERSON ALSO FOR 24 HOURS AND THEY ARE MANY. I PERSONALLY HAVE CHANGED A LOT. THE ANGER IS GONE AND THE GUILT IS HEADING THAT WAY.

I NOW WILL BE A LEADER OF ALZHEIMER'S GROUP MEETINGS, THIS IS A 360 DEGREE TURN AROUND IN MY LIFE. I HAVE TO GIVE MORE OF ME BUT IF I CAN HELP ANYONE IT WILL BE WORTH IT. I ALSO SPEND ABOUT 12 HOURS A WEEK VISITING MY HUBBY AND OTHERS.

THE COPIES I HAVE OF THE RIBBON ARE WITH ME AT MEETINGS, I'M SURE YOU DON'T MIND. SO FAR I HAVEN'T USED IT BUT KNOW SOMETIME IN THE FUTURE THEY WILL BE THERE AS YOU ALL HAVE BEEN FOR ME. JAN

See you all next time!
Hugs and Peace,

Karen (KMenges581)
and
Jamie (DrMOM1955)