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Tuesday, December 31, 2024 |
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Here in Tennessee we are experiencing the wonderful cool days of Autumn. I think this is my most favorite season. I have a bit of a dread coming up though and I need the help of you, my fellow caregivers. Winter is soon upon us, therefore it will be too cold for my grandmother to do her walking. She is starting to get a bit depressed so I am thinking of an Adult Day Program. That is where the help is needed. She says she wouldn't be interested in going to a "Senior Center". How did you get your Loved One to attend? Did you just take them for a visit a couple of times and let them become accustomed to going? I'm in a bit of a quandry and need some helpful hints. Not only will I read and use your hints but I will reprint them in the next issue in order to help someone else who is in the same predicament. You can send your replies to KMenges581@aol.com since Karen keeps up with all the correspondence. She will forward everything to me. I know she will love me for this added work. Thanks in advance, Jamie Veterans Alert One of the biggest issues in a family's life when caring for an Alzheimer's patient is how to pay for the cost of care. I would like to relay to you all how my family was able to get some help. And from what I have found out, not too many people are aware of this assistance. My father, a World War II veteran, died in 1993. A year later, Mom was diagnosed with AD. In 1998, I relocated myself 400 miles to help my brother care for our clearly failing mother. We knew that the day would come when we would need to hire help for her care and we knew that eventually we would have to place her in a facility that could give her 24/7 care. Question was, how do we pay for this? When I made that move, I took some time off from my job to help get things under control at Mom's. One of the things I did was to look very hard for options to assist us in paying for her care. I found out that as the widow of a veteran, Mom is entitled to a Widow's Benefit. I contacted the local office of the Veteran's Administration and began the long process of applying for that benefit. At first, when we hired a part-time daycare worker, that benefit gave us half of what we needed to pay her. And then Mom was reevaluated when she was placed in an assisted living facility. At the present time, we receive a check that, again, covers half of the cost of that facility. Mom's Social Security covers the other half. Be aware that it is in this case that we are fortunate enough to have half the cost covered; some facilities are more expensive and the benefit will only pay part, not necessarily half. Every case is different and there are limits. But it is certainly worthwhile to investigate. If your loved one is a widow, and her husband is a deceased veteran, there could be some assistance available. Contact your local office of the Veteran's Administration and ask.....Widow's Benefit. Be prepared for a long, drawn out process and lots of paperwork. But it might pay off for you and your loved one, as it did for my family. Anyone who has any questions may feel free to e-mail me. Karen Beating The System By Being Prepared Can Prevent Agony DEAR ABBY: It was about 3 a.m. The call came in as a signal 14. In laymen's terms, it means someone died. A 47-year-old, terminally ill woman had succumbed to stomach cancer. The call was close to the station so we beat the ambulance to the scene. When we arrived, it seemed like her entire extended family was there. As we were about to enter the bedroom, the daughter asked if we were there to pick up her mother. We asked if they had DNR (Do Not Resuscitate) papers. She said yes, but hey were at the hospital. Instead of starting CPR (which is what we are supposed to do when the DNR papers are not present), our paramedic called medical control, the doctor in charge of our service. Fortunately, he agreed that CPR should not begin. Abby, this scenario has happened more than once, and I am getting a little angry. My anger is toward the system that sometimes puts family and loved ones between a rock and a hard place. The hospital and doctor know that a copy of the DNR papers has to be with the patient at all times or they technically don't exist. Instead of letting their mother die in peace, that family almost experienced the sight of her receiving advanced-care life support. For anyone who is not aware, this is far more than giving chest compressions and mouth-to-mouth. She would have had a tube down her throat to aid in breathing, body wrenching shocks would have been given, IV lines, drugs, etc. When my stepfather lost his battle with lung cancer, my mother had worked everything out in advance with the hospice facility. All she had to do was call hospice, and they sent a medical examiner. No ambulance. Just a peaceful, dignified way to deal with a sad situation. Please Abby, tell your readers that when this happens to them, or to someone they know, to make sure they know what to do. -- CARING FIREFIGHTER IN TEXAS
DEAR FIREFIGHTER: You have taken care of that -- and graphically, I might add. Although some people want every effort made to be resuscitated, many do not. Those who do not should keep in mind your warning that for their wishes to be obeyed, they must be written down, discussed with family members and doctors, and copies must be available. Thank you for your reminder. From the August 28,2000 issue of The Tennessean Editor's note: When I read
this it brought back what happened when my grandfather died. He
had a living will but it was filed at his doctor's office. My
grandfather passed away on a Sunday morning and the doctor was
out of town. Luckily we had kind policemen, firefighters, and a
medical examiner, though it did take many phone calls and lots of
talk before my grandfather was able to be released to the funeral
home. Help Stop This Bill Forwarded by HOST AHTH AC Go to their website and write directly from that site. This is my letter, the first was a pretyped in format, but you can add anything you wish in the box, and sign the letter with sincerely or something and your name, it will go directly to your officials for your area. FROM: This message was sent to: Copy of message text: I am writing to express my opposition to the Pain Relief Promotion Act (HR 2260/S. 1272) because it will inhibit health practitioners from properly alleviating pain. This misnamed bill will actually prevent pain relief rather than promote it. Editor's Note: I deleted Kathy's last name and address in order to protect her privacy. On Our Own Terms Those of you who have been watching the PBS special "On Our Own Terms: Moyers on Dying" will be able to appreciate how difficult it is to put together the Death, Dying & Late-Stage Alzheimer's Disease Hot Topic. We started out with a few articles, book reviews and site links. At mid-month, I have added a few more items. Of greatest interest are the two expert discussion groups that will be held in the Elder Caregiving Chat Room. These real-time discussion groups are unique opportunities to get together in a comfortable setting to discuss serious issues with top-notch professionals. We have also added two more book reviews: "My Mother's Voice" by Sally Callahan and "Hard Choices for Loving People" by Hank Dunn. On Monday, September 18, Dr. John Carter of
Mt. Sinai Medical Center and the Jewish Home and Hospital in New
York will lead a discussion on ethics and palliative care. Dr.
Carter is a graduate of Jefferson Medical College, Philadelphia,
PA. He completed an internal medicine residency at Albert
Einstein Medical Center, Philadelphia, PA and completed a
geriatric medicine fellowship at Mt. Sinai Medical On Wednesday, September 20, Dr. Joanne Lynn of the Center to Improve Care of the Dying in Washington, D.C. will lead a discussion on quality of life issues for terminally ill individuals. Dr. Lynn is an internationally known leader in helping terminally ill patients improve quality of life. Her writings focus on helping all people approach the end of life with greater awareness of what to expect and greater confidence about how to make the end of our lives a time of growth, comfort and meaningful reflection. She is the Director of the Center to Improve Care of the Dying (CIDC) at George Washington Medical School in Washington, D.C. She is also the co-author of "Handbook for Mortals: Guidance for People Facing Serious Illness." I encourage all of you to attend these sessions. If you know that you will be unable to attend, please submit a brief (and concise) question to askcasey@ec-online.net and I will try to have the guest hosts respond to them during the chat sessions. You can enter the Elder Caregiving Chat Room at http://www.ec-online/Community/communit.htm or just go to the main page (http://www.ec-online.net) and click on the "Chat Now!" link. Kind Regards, In Passing: Those We Must Remember From Lndmark191 I am just writing to inform you that my son took the computer to college with him , so I am being removed from the internet. Iwould like to thank all of you for being such great friends. also, for those of you who do not know, my father passed away at 86 on tuesday august 29.he was buried on friday the 1st, with my son Keith as a paulbearer and with Keith also giving a beautiful eulogy to his grandfather. please keep my family and I in your prayers during this time. goodbye, godbless and good luck to all of you. love always, Did You Know? Here are some little known facts about Alzheimer's: Did you know... ...that dementia IS NOT the name of a specific disease, but is a word used to describe the mental condition of a person whose memory is impaired and whose problems with processing information are severe enough to interfere with his or her ability to function normally? Did you know... ...that there are two types, two forms and two categories of Alzheimer's? They are... Did you know... ...that by stage 5, the brain is already 50% destroyed by Alzheimer's? Did you know... ...that the Hippocampus is one of the earliest areas of the brain to be affected by Alzheimer's? Did you know... ...the day the Hippocampus is destroyed by Alzheimer's, the person will lose the ability to recall the last 3 years of their life? Why? Because the Hippocampus is essential to memory storage. Did you know... ...that by stage 6, their ability to remember what has been told to them, is now down to 5 minutes? Did you know... ...that they will slowly lose their peripheral vision? And that is why it is so important that you approach your loved one from the front. It is the only way they will see you coming. Did you know... ...a person with Alzheimer's may revert back to a native tongue if their primary language was not English? Did you know... ...about 14% of all Alzheimer's victims develop somthing called Akathesia (termed restless pacing)? Which is the inability to control pacing? These victims are easily identified because they are constantly moving, staying in one place no longer than a few seconds. Did you know... ...by stage 7, their abilities are reduced to that of a few week old child? Did you know... ...that your loved one may suffer bowel and bladder accidents because they cannot remember what the sensations mean? Did you know... ...that people born with Down Syndrome, will eventually develop dementia? Did you know... ...that many people with Alzheimer's develop Visual Agnosia, which is the inability to comprehend what they see? Did you know... ...that after it destroys the Hippocampus in the brain, it them moves on into the Parietal lobe? Once there, the person may hallucinate, suffer seizures, and lose the ability to speak, to read, and to recognize places, objects, and faces, even of family members. [ middle stages of Alzheimer's ] Did you know... ...that final area of the brain to be affected by Alzheimer's, is the Motor Cortex? By then the person can no longer walk, talk or swallow. Pneumonia may set in when bits of food are inhaled. [ late stages of Alzheimer's ] Did you know... ...as the devastation moves through the brain, it follows a course that corresponds to the person's symptoms? The first nerves to die are in the hippocampus, where memories are stored. The destruction then moves to the parietal lobe and finally the cortex [the outer layer of the brain] which controls your ability to speak, and walk. -- Marsha Penington Copyright 1998 A Daughter's Dream I had a dream the other day, Dedicated to my 'Little Mama' with Alzheimer's From WilloRain Email Bag From Punyun Thanks Karen for The Ribbon, for me it is such a wealth of information and support. For those who know me, my Mother she is just barely hanging on by a thread. She is expected to go any time now. She doesn't know any of us which I knew was going to happen. I have watched Alzheimer's from the beginning right on thru to the very end. Mom stopped eating about 7 days ago. That came on little by little just like everything else did. I truly have never witnessed anything so sad in all of my life that can rob one of every little piece of anything that they might have. I have cared for my Mother for 15 years thru the osteoporosis right on thru to the Alzheimer's in the end. I have been thru everything from tears to frustration and back to tears again. I have tackled every legal situation that could possibly come our way along with relatives that thought they knew better. I know that my Mother knows that we all love her very much. For all of you out there who have a loved one with this absolutely terrible disease God Bless you all and take a minute out to pat yourself on the back, for you truly deserve it. Love you all, Ginny From Datel123 You
knew you would hear from me on this issue. I will be as
diplomatic as I can and refrain from stepping on anyone's toes or
feelings. In a world of perfect people who love their families
and care for their well being Mary's solution would be a
wonderful idea. Unfortunately we aren't dealing in a perfect
world and as hard as we might want this to happen and become a
reality, most of the time it doesn't. You can call family
meetings, you can hope that their loved ones care enough to want
to participate in that person's care but unfortunately that is a
mythical dream that isn't reality. Reality is that when your
loved one is diagnosed with an incurable disease, especially
Alzheimer's families tend to scatter like a bunch of chickens
with a fox in their midst. Trying to get family members from both
sides of the family to sit down and have a rational conversation
would be great. Wouldn't it be wonderful if it did? Sit down like
civilized people and make a care plan for that loved one. But as
I have said before, you mention the word Alzheimer's and families
and friends can think of more things they have to do, places they
have to be and they let you know specifically that they have no
time for this in their lives. Most first meetings wouldn't run
smoothly. I can attest to that. I did exactly as Mary had
suggested. I had called the head of our local Alzheimer's chapter
to be here hopefully to explain the long journey I was about to
take because at that point I was more lost than anyone you will
ever meet. I knew nothing about this disease but events leading
up to him being diagnosed had given me the insight to know that
this wasn't something I could do alone. Two family members showed
up. My daughter and my sister. After hours of discussions,
explanations from the director, the vision she gave them of the
future, they both left here oblivious to one single concept. For
a family to work together as a structured team regarding the care
of an AZ. Patient there has to be understanding of the disease
and what the care of that individual entails. That's it for this issue. We hope you all will continue to write and send us your comments, suggestions, questions, helpful hints, and articles. We love being able to put together YOUR newsletter. Remember, The Ribbon is for You the caregiver. Hugs and Peace,
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