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
KAREN AND FRIENDS,
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.
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:
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.
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!
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!
thanks again for another great newsletter, and here again you seemed to focus on what
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.
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.
In Passing: Those We Must Remember
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.
Hi everyone...I just got a note from Hestia1249 (Kathy) today and her Mom passed away on May 16.
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.
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
From Anne 8RGR8
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 --
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.
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.
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
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.
Hey, Karen and Jamie.....as usual, a job WELL DONE!!!!!!!
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!!!