Volume 2, Issue 10 - The Ribbon Newsletter

Volume 2, Issue 10
May 28, 1999

Should anyone be interested, Patti Davis, daughter of Ronald Reagan, has written an excellent essay in the June issue of Ladies' Home Journal. It's well worth reading, even if you do it during your wait in the checkout line.

Here is a note we received and what Karen sent in reply:

From BELL OF WV

DEAR KAREN AND FRIENDS,

JUST WRITING TO GET SOME ADVICE OR INFO. ON THE FEEDING TUBE.
MOTHER IS IN HER LAST STAGES OF ALZ. AND HAVING TROUBLE SWALLOWING AND THEY HAVE BEEN TALKING IN THE NURSING HOME ABOUT THE FEEDING TUBE, AND I AM CONCERNED ABOUT IT BECAUSE MOTHER IS SO WEAK AND FRAGILE, BUT MY SISTER THINKS IT IS THE BEST TO GO ALONG WITH IT. SHE HAS BEEN THROUGH SO MUCH AND BEING POWER OF ATTORNEY,,IT'S REALLY MY DECISION, BUT IT'S A TOUGH DECISION TO MAKE. IF I COULD HEAR FROM SOME OF OUR MEMBERS OR FROM YOU,,ON THE SUBJECT,,I COULD LET HER READ THE MAIL. SHE DOESN'T BELONG TO A SUPPORT GROUP AND I FIND IT VERY HARD TO TALK TO HER. SHE IS HERE FROM FL. FOR A MO. OR SO AND HASN'T BEEN TOO SUPPORTIVE DURING MOTHER'S ILLNESS AND DOESN'T SEEM TO HAVE A CLUE AS TO WHAT'S GOING ON. ANY HELP YOU CAN GIVE ME WOULD BE DEEPLY APPRECIATED.

THANKS AND HUGS,
VIVIAN

Karen's reply:

Viv, I got your note and looked thru my files for some help for you. I recently attended a support group meeting, "in person", where end stage care was discussed.

The following is part of a handout given to us by the Alzheimer's Association speaker. The article is entitled "Making End-of-Life Decisions" by Hank Dunn. He is a chaplain at a Nursing Center and has a book called "Hard Choices for Loving People". You could contact your local chapter for this book. In the meantime, I hope this offers you something to share with your sister...you are in my prayers, Viv...Karen

Another treatment decision that families sometimes face is the use of an artificial feeding tube. Eating difficulties can accompany the later stages of Alzheimer's. Most people see this as a sign of the progression of the disease and therefore it does not have to be treated aggressively with an artificial feeding tube. In a great deal of these cases a feeding tube will only prolong the dying process and make the patient more comfortable.
A legitimate question to follow would be --"Wouldn't the patient die of dehydration without the artificial feeding and wouldn't that be painful?" The answer is yes, they probably would die of dehydration. Since the beginning of time people have been dying of dehydration's, and many do so today. Research and clinical evidence reveals that death by dehydration is a very compassionate and comfortable way to die. On the other hand, hydrating by a feeding tube of IV prolongs the dying process and may make it more uncomfortable by filling the body with fluids which can gather in the throat and lungs.

When a patient reaches the final stages of Alzheimer's disease, many physicians and families consider providing comfort measures only. Dementia's final stage has the following characteristics:

All verbal abilities are lost. Frequently there is no speech at all--only grunting.
Incontinence.
Requires assistance with feeding.
Loss of basic psychomotor skills.
The brain appears to no longer tell the body what to do.

Failure to thrive.

Dementia does not fit into what we normally think of as "terminal" disease such as cancer, with less than six months life expectancy. But in reality it is terminal. As you know, a person can suffer with Alzheimer's for up to a decade or more. People literally do not die from Alzheimer's disease, rather they die from complications resulting from the disease, like pneumonia or dehydration. But this final stage is an indication that the patient will die. When death is inevitable many choose to provide comfort measures only, such as pain medications of oxygen. This includes choosing to forgo antibiotics because they will only prolong the dying process and will not cure the underlying problem of Alzheimer's disease.
Through all of these decisions the family will be going through the emotional and spiritual work of letting go. Hopefully, you will have a support system of friends, a spiritual congregation and a clergy to aid you in your journey. Conversations with the patient's physician are most important in making decisions.

Responses on Incontinence

From MM Sunbury

You certainly hit a chord in the "Ribbon" about your Incontinence subject. My daughter, a 31 yr. old Down Syndrome individual, could always have had a medical problem. A urologist at one time tried to do some tests on her but told me because she couldn't understand his instructions he was unable to determine if there was such a problem. When she laughed, or got excited she lost bladder control from when she was about 4 yrs. old. Now that she is suspected of having AD this problem has gotten worse.

She lives in a facility with others like her, and is well cared for. She has a very low IQ and will always have to live in a protective environment. She can take care of some of her personal needs but needs help bathing, shampooing her hair, etc. She had changed from a sweet, calm, smiling person into a person who was afraid to eat, screamed, threw things, hallucinated, and in general was out of control. It took quite some time when we noted these behavioral problems (and seen by a multitude of doctors) before she was put on medication which help control some of what was happening to her. I was told though she was too young to succumb to AD for a long time. After much research with national organizations, neurologists, and a few families, I am finding this can happen sooner than it was considered before

All the personnel in her facility are told they are not allowed to put any kind of protection on her, as pads, depends, etc. The administrator of her home seems to have the opinion that once you start using protection the individual will then wet even more. I live nearby and found I had to protect my furniture and cue her whenever she was at my place to use the toilet. Sometimes it works and sometimes not. She attends a local training center and comes home with wet pants and jeans quite often. There are times when she arrives back at her place from the training center when it is in the dead of winter and she has wet pants. When I was told she was dry most of the time I would check in her dirty clothes basket and found several underpants and jeans which my daughter had obviously wet. Finally out of frustration with the situation I stopped checking since I felt as if I was up against a brick wall. Other than this obvious problem I am thankful she is living where she is. As a widow I felt I had to find a place for her in the event I was no longer around. I know my problems are small against what I read in "The Ribbon", and what some of the caregivers have to contend with. Since my daughter, over the years, has had a multitude of very serious medical problems I do understand what caregivers go through. I read what you write diligently for tips which could help in the care of my daughter. Thanks for all your efforts!

From Bubbierg

It often seemed to me that during my husband's 3+ years of diagnosed AD, that the dread was worse than the event. Closing the office, giving up driving, sending him to day care, etc. turned out to be a relief instead of a tragedy. Incontinence came earlier than expected-- fore and aft--and he actually pointed out to me the incontinence supplies in drug store. Cloth diapers didn't work at all, but the best Walgreens adult briefs are great. Absorbent and comfortable, so not urgent to change immediately.

Also the Walgreens disposable and washable bed pads completely protect mattress at home or traveling. Kleenex wipes are good for fecal cleaning, but sometimes a warm washcloth and soap are needed to speed up the job.

I was so relieved that he accepted the diapers and my help without embarassment or complaint, and as a result we can enjoy so many social activities.

I am also grateful to the people who crusaded for disability public bathrooms which are often coed but always big enough for the two of us. Made it possible for us to go to Disneyworld last week!

From Mjl0515

thanks again for another great newsletter, and here again you seemed to focus on what
we needed most. seems my father in law is getting worse and nothing gets my mother in law more fustrated then him having a bowel movement. especially if it starts in the morning it seems that just makes it a terrible day. yesterday he was not having a good day seemed really disoriented, anyways my sister in law and i put him to bed, she could not sit down, she had to tell us step by step what to do. then this a.m. she called to let us know how we messed up by taking his watch off and how he woke up at 3 a.m. looking for it, and then she was up from then on. i just pray for her to be patient and if she can not handle him that she will go ahead and send him to the nursing home even if it will break my heart as well as my sister in law. well thanks again for letting me air my frustrations. i really hurt for my mother in law but i feel like it's my father in law who really is the one who had his life stolen from him.

thanks again,
mary jo/ mjl0515 @ aol.com

From Hestia1249

Karen & Jamie, a GREAT BIG THANK YOU!!!! I feel so much better having read this volume of 'The Ribbon' It was fantastic and made me feel so much better about the courses I have had to take in caring for my Mom.

She is in a NH for a brief stay after suffering a moderate heart attack and I was feeling so horrible when I noticed that they had a diaper on her. I was feeling as if I have failed her and should have her home because I don't use diapers, but rather pads on the chair covered with a towel and baby powder.........but the incontinence is there regardless. I feel better! Thank You!

Also I belong to an Alzheimers list and would love to post a link to 'The Ribbon' Vol. 2, Issue 9 as all of the info is so pertinent to questions we all deal with, but did not want to re-print without your permission.

Thank You so much.......you will definitely be one of my five gratitudes in todays journal.
*Kathy* aka Hestia1249

From RHONDA1872

I'm writing in response to the information on incontinence. Beverly should also do research on how to handle an alzheimers patient that will not let their caregiver change or diaper them. This is what happened with my late father-in-law that had AD and his caregiver wife. He would become combative when she would try to change his soiled clothes or put a diaper on him. One of the last days before putting him in a nursing home was when my mother-in-law called my husband at 2:00 in the afternoon saying she could not get him out of bed and if he would come over to help. When my husband went there, the house smelled terrible. He had deficated and urninated all over himself and the bed a number of times. He would not let my husband get him out of bed and showered, he was swinging his arms wildly about at my husband and his mother. My mother in law took care of him for 65 years, the last 5 years with alzheimers. She did the best she could. He was a danger to himself being at home and her. He passed away March 21st.
Thank you for your great work "The Ribbon"
Rhonda

In Passing: Those We Must Remember

From Shansee123

After four long years, my wonderful Mother, Maria, died in her sleep on April 2nd. I want to thank you for all of your very supportful poems, stories and letters. Although I didn't much participate in discussions, you do a great service to a large network of persons caring for the ones they love.

My Mother was an incredible person, always giving, never expecting to receive--the epitome of what "mother" is. Although her Parkinson's/Dementia had taken it's tole on her mind and body, she still remained a strong presence in my life until the end.

Thanks again for your kind efforts.

Shansee (Terry)

From Hestia1249
Forwarded by LIZA 513

Hi everyone...I just got a note from Hestia1249 (Kathy) today and her Mom passed away on May 16.

Book Review

From MeeMawMoe

Hi everyone,
I have just finished reading a great book, Facing Alzheimer's. It deals with eight women who have husband's with Alzheimer's. For those who have spouses with Alz., this book really deals with the emotions and feeling we have. I can identify with many of these feelings and found this book very informative and comforting.
This is what is written on the back cover of the book:
When the body and the mind of someone we love begin to fail, the burden that falls on the caregiver can be overwhelming. In this deeply practical and warmhearted book, eight women who have lived through their husbands' declines talk frankly about how they faced the agonizing decisions they had to make and live with, including:

Acknowledging the illness
Shifting responsibility from the afflicted mate
Coping with crises, including violence
Weighing home care against institutional care
Nuturing one's own sanity and health
Preparing for the end--and beginning again

The author is Patricia Brown Coughlan. Maybe you have already read or heard of it. I found it to personally to be excellent, although as I am a Christian, I will and have already handled some things differently.

I have never finished reading The 36 Hour Day. BJBudy bought it for me, and at the time I wasn't ready for it. I read parts of it. But after reading this book first, I am sure I can handle it now. But I will have to buy another one. LOL I loaned it to a friend. Again I want to thank you for all the help and encouragment you have given me. Without all of you and God's help, I don't know where I would be right now. But at this moment, I feel I can face this challenge and cope with it and try to do my very best. I am learning and don't have much input, but maybe someday I hope I will have enough confidence to help someone else, like you have me. I truly love you all. Thank you so much.

Love and hugs, Sharon

Medical News

From LIZA 513

SBP MEETING: Risperdal Significantly Decreases Schizophrenia Relapse Risk --The following article came from this link. I know some of our loved ones are on risperdal so wanted to share this with you.

SBP MEETING: Risperdal Significantly Decreases Schizophrenia Relapse Risk

WASHINGTON, DC -- May 14, 1999 -- Individuals with schizophrenia who take Janssen Pharmaceutica, Inc.'s atypical antipsychotic Risperdal(R) (risperidone) suffer a significantly lower incidence of relapse than patients on haloperidol, a conventional antipsychotic long considered to be the standard of care, according to new research presented this week at the annual meeting of the Society of Biological Psychiatry.

This is the first head-to-head study that compares an atypical antipsychotic medication to an older, conventional antipsychotic to assess the drugs' ability to prevent relapse.

"Even after individuals with schizophrenia achieve initial success with treatment, they face the frightening possibility of relapse and a host of resulting consequences -- including hospitalisation and suicidal thoughts that can drive them to suicide," said John Csernansky, MD, lead investigator and professor of psychiatry at Washington University in St. Louis. "This research is good news. It shows that Risperdal, one of the atypical antipsychotic medications, reduces the risk of relapse to a significant degree over the longer term -- thus allowing patients to remain in an outpatient, community-based setting."

In a multicentre, randomised, double-blind study, U.S. investigators monitored stable outpatients with schizophrenia or schizoaffective disorder to compare the rate of and time to relapse in individuals treated for a period of at least one year. Among the definitions of relapse were the need for psychiatric hospitalisation and the recurrence during treatment of significant symptoms such as deliberate self-injury, violent behaviour or suicidal thoughts. Of the 365 patients receiving medication, 177 took Risperdal, at a dose that averaged 4.9 mg per day. The other 188 participants received haloperidol, taking a mean dose of 11.7 mg per day. Assessments were conducted weekly for the first four weeks and at four-week intervals for the remainder of the study.

The longest time that any subject received the test medication was 799 days and 794 days for Risperdal and haloperidol, respectively. During the entire trial, 25.4 percent of patients taking Risperdal relapsed, compared to 39.9 percent of haloperidol recipients. In addition, individuals on Risperdal took a significantly longer time to relapse than persons who received haloperidol. The mean time to relapse was 452 days for Risperdal and 391 days for haloperidol.

Another measure of efficacy of the two drugs was patient scores on the Positive and Negative Syndrome Scale (PANSS). Positive symptoms include visual and auditory hallucinations. Examples of negative symptoms are apathy and social withdrawal. Participants who took Risperdal experienced a significantly greater improvement in their total PANSS score at endpoint than did those on haloperidol.

In addition, patients taking Risperdal experienced fewer serious side effects during the trial. At endpoint, Risperdal patients reported a lower incidence of extrapyramidal symptoms (uncontrolled tremors and muscle stiffness, a common side effect of antipsychotics) than those on haloperidol (8.5 percent versus 15.4 percent respectively). Individuals taking Risperdal also reported a lower incidence of the most common adverse events: insomnia (23.7 percent versus 28.7 percent), psychosis (16.9 percent versus 25.5 percent) and somnolence (drowsiness) [13.6 percent versus 25.0 percent].

Risperdal was introduced in 1994 for the management of psychotic symptoms. In two, six to eight-week placebo-controlled trials, several spontaneously reported adverse events emerged during treatment in at least one of the Risperdal groups at an incidence rate of five percent or more and at a rate that was at least twice that experienced by those taking a placebo. These adverse events included anxiety, drowsiness, extrapyramidal symptoms (uncontrolled tremors and muscle stiffness), dizziness, constipation, nausea, rhinitis (inflammation of the mucous membranes in the nose), rash and tachycardia (rapid heartbeat).

The percentage of patients reporting extrapyramidal symptoms (EPS) in the North American clinical trial was 16 percent for Risperdal 6 mg/day, 13 percent for Risperdal 2 mg/day and 13 percent for placebo. EPS with Risperdal, while dose dependent, occur at a rate that is comparable to that seen with placebo at doses less than or equal to 6 mg/day, and differs significantly from placebo at larger doses. Prescribing should be consistent with the need to minimise the risk of tardive dyskinesia (involuntary movements that affect the face, lips, mouth and tongue). If its signs and symptoms appear, discontinuation of Risperdal should be considered.

E-Mail Box

From Anne 8RGR8

Karen --

I see that you are online, apparently sending out the newsletter. What good work y'all do on it. I am sitting here with tears rolling down my face.

The letters from those who have recently lost their loved ones were so touching -- the expressions of being glad the loved ones are now finally free. Oh, how I remember that feeling too. And I almost felt guilty because of it. But I know how happy she was to finally be free. I missed my mom so much more before she died -- when she was "here," but she was "gone."

I am leaving in a couple of days to go to Tennessee for a family reunion with my first cousins on her side of the family. She and Dad are buried in Kentucky, just across the state border there. Only one of her siblings now survives. I have just realized that it's such a happy occasion, but also very sad for me also. Three uncles and one aunt have died since Mom -- I'm sure they have had some wonderful reunions there (in heaven) also.

And a special thanks to Sgh34 for the "The Conversation," -- it was so beautiful and so poignant. The frustrations of wondering if anything gets through, and of them wanting to communicate -- and yet the gratitude that you know is there. I still would not do it differently -- I would want to be just as involved and have the privilege of Mom in my home. Even the piece on incontinence, all of the newsletter just helps me remember. But I also feel like she did -- I hope my kids don't have to go through it all.

God bless you -- and each person in the group. What a blessing to have the internet to connect you. I'll check back in when I get back home again. Just always know that you are not alone in your struggles -- and that every moment of it is worth it.

Love and hugs to you --
Anne

From JDunn56760

Its so hard to face each day with and without our loved ones. Today I was daring and took my Hubby out of home for a beard trim and haircut and lunch. He was less frightened than myself taking him out after 6 weeks. He is only bearded man there as its easier for myself to see a bearded person than the older clean shaven man I married 51+ years ago. He will be starting presc. HALDOL soon as I get it. He is quite combative and hard on aides, I know feeling as I'm the one that got hit regularly yet hesitated to place him. Thank all of you for your info. and support.

From BRENDUCK

As always, thank you for your commitment to the Ribbon! In reading this past edition, the tears came again. Tears from a feeling of relief and sharing and knowing that there are so many caregivers who feel just like I do. Thank you to sgh34 for the Conversation, it is a reminder that those we care for do have feelings, though they can't always express them. And the letter from Bean 2591, stressing support and education, how correct. Knowledge is power and helps us to get through the fear we face as we help care for our loved one.

I am so thankful for my new sources of strength ...friends connected by THE RIBBON.

From Bobbi191

Well, I finally got around to reading the latest issue of The Ribbon. Thanks again for all the help and support you give all of us. I finally had to place Mom in a home four weeks ago and it has been a very hard thing for me. I know in my mind it was the only thing to do but my heart does not want to accept that. She just reached the point I could no longer give her the care she required. She is doing really well and is close enough that the rest of the family can spend time with her now but I sure wasn't prepared for the depression and loss that I am feeling. I guess I will get over it. Thanks again for all the care and help you give. Bobbi191

From Zenoba

I am writing to thank you so much for the time and effort that you all put into getting The Ribbon together. I have found every issue helpful and have even gone and located older issues. One thing with this disease the information never gets old. My husband and I have been taking care of his mother now since 1993. She was diagnosed with vascular dementia in 1995. The disease has finally consumed her life. She has been completely bed bound since December 1997. My mother in law is now in her final stage of life. It is such a sad thing watching the body unable to support itself. I would like to take a few minutes and give a little info. I hope that my story can help someone just like all the stories that I have read have done for me. My mother in law suffered a stroke in July 1993 that left her unable to care for herself so we moved her in with us. The doctors informed us that the stroke had happened because she had arteriosclerosis of the neck, needless to say before any surgery could be performed another stroke left her unoperative. Her daily activity and memory begun to slip away. Our physician that had been treating her said all of this was "normal" for an aging individual. I was not satisified so we decided to get a second opinion. The physician suggested and arranged an appointment with a neurologist. He did a series of test (physical, mental, and brain scans), which all confirmed she had vascular dementia with no hope of improvement. CAT and MRI scans showed her brain had already begun to shrink. When we asked what we could expect to happen, the doctor handed us a book on the stages of alzheimer. We were left in total shock but we decide to become as informed as we could and take one day at a time. All of us who have traveled or are currently traveling this road know what the next few years were like. My husband and I had to resign ourselves to the fact that she had become too much for us to handle and we were scared she was going to hurt herself. We decided to place her in a facility that was designed to take care of people with this disease (this was the hardest decision to make but sometimes it is necessary. It was a comfort to know that professionals that dealt with people under these circumstances were taking care of her. The ACLF was wonderful at first, but after several changes in management and staff it had deteriorated just like my mother in law's memory and physical condition, so in December 1997 we decided we were capable of taking care of her ourselves. One day before she was to come home to live with us the phone rang and they said my mother in law had suffered another stroke. My husband and I rushed to the hospital and things did not look good, after a few days we were informed that her ability to swallow had been affected. We took her home on New Years Eve and a home health agency came to check on her the next day. All the next day we could not wake her. When the home health nurse came she found her eyes fixed and dialated, another stroke, so the ambulance was called. My mother in law had now hit a new level in her disease. She arrived back home in the middle of January. All new challenges were ahead with feeding, bathing, and communicating. The feeding was not getting better and since in her living will a feeding tube had been outlined one was quickly put in place per our home health agency. Just a week later after the surgery for the feeding tube I found my mother in law one morning foaming at the mouth and gasping for air, she was in congestive heart failure. The ambulance team put a vent in her on the way to the hospital to help her breath because we did not have a DNR order. When we arrived they said she would probably not make it without the vent and asked if we wanted to remove it. We both agreed it would be best, but she pulled thru and came home 14 days later. Needless to say the road remained bumpy and tough. In December of 1998 my mother in law had hit another level no verbal communication and build up of fluid that had to be suctioned. The only new problem was that our home health agency wanted to leave us. Visits had become nonexistant, an aide once a week and the nurse once a month for her urinary catheter to be replaced. All the other care was left up to us and this had come about because of the Budget Balance Act. We contacted our doctor and asked for a request for Hospice. My mother in law has been with Hospice ever since and what a blessing it has been. I know that it would have been so hard to live through where my mother in law is right now. Her body is beginning to fail. The feeding tube is no longer a help but a hindrance. Anything that goes down the tube comes right back out her with discomfort. She can no longer tell us how she feels but she moans and moans. It is such a sad and uncomfortable feeling not only watching her go through this but knowing there is nothing more you can do. They say in death there is three stages physical, mental, and spiritual. My question is when the mind is gone how can one meet all these stages? My husband and I have lost my mother in law a long time ago but we still love her and comfort her with hugs, kisses, music, and scripture. I don't know what she can understand but I treat her just as I would want to be treated. I never hide any of the stages of her disease from her but at the same time I always reminder her she was not alone and loved very much. No matter how bad you think it can get the disease of alzheimer always seems to surprise you. I wrote this in hoping that my words could help someone out there who feels like the roof is caving in with no escape. I know that when my mother in law passes it will be a "double edge sword". I will miss her but I will know that her suffering is over and she is a much better place.

From JRNYWMN

Hey, Karen and Jamie.....as usual, a job WELL DONE!!!!!!!
Thanks! Ann, Janalee and Louise (Mom)

From Bean2591

Thanks for The Ribbon...as always it was very informative and helpful. At the Alzheimer Resource Center in Orlando we publish a quarterly newsletter, The Caregiver Lifeline, and I am interested in knowing if we can use some of the useful tips on Incontinence. Our next newsletter is scheduled for August. I know that our family caregivers will benefit from these suggestions.

I will appreciate a response at your convenience. Again, thank you for your sharing the great info to all the caregivers who are fortunate to receive The Ribbon. Shellie

Thanks for all the input that you all give. We do appreciate it.

Just a note: We do not mind you sharing The Ribbon with anyone. Use articles, links or what ever you need. We just ask that you give credit where credit is due.

We hope you have a Safe and Wonderful Memorial Day Weekend!!!

Hugs and Peace,

Karen (KMenges581)
and
Jamie (DrMOM1955)