I'm going to try this with AOL 4.0 but I'm not going to get fancy since there are still folks who are not ready to change. I like parts of 4.0 but some of it is taking some getting used to. Before we continue with the follow up articles on Long Distance Care we are going to share a letter we received concerning a major health issue.
I thought something that happened in our family may be of interest to all who receive the Newsletter. A family member who was living by herself was taken to the Hospital and diagnosed with "Ecoli". She is a very active 84 year old and her mental state is quite normal. Immediately I thought it was from contaminated food, but later found out that was not the case. She was washing her Attends out at night and then using them again. From this she got a "Urinary Infection" and then the infection went into the blood stream. It was Ecoli. Her kidneys shut down completely and her blood pressure was almost undetectable. She was very sick and because of her age they didn't think she would make it. But thank heavens she is a very strong lady and she finally came through it. Although she is still not well and may have repercussions from this. Her kidneys are still not operating at full capacity. I for one, could not believe someone would do this,. But I have been told it is quite common with the Elderly. So all you Caregiver's out there keep an eye out for this one. Hope this information will be of some help you all. A Fellow Caregiver
Saying Good-bye to Independent Living
It can be very wrenching to leave one's own home and move in with a loved one or enter an assisted-living facility or nursing home. On a symbolic level, it is a clear statement that the affected individual is no longer a free agent, but has become dependent on others. Reactions to this transition vary tremendously. Some people go meekly, relieved that others will take care of them, and glad to be rid of the increasingly confusing burdens of living independently. Others flatly refuse to leave their homes, and accuse family members of "kidnapping." A good way to ease people with early Alzheimer's out of independent living and into living with someone else is through a slow transition process: First a combination of frequent visits from caregivers who help with cooking and housework. Next, a meals-on-wheels program, a maid, and a daytime aid a few days a week. Then full-time at-home help--in either their home, or yours. In the transition away from independent living, there are no clear lines of demarcation that say: It's time to have full-time care. Use your judgment.
But here are some signs to look for:
Once you make the decision that your loved one can no longer live independently, you must make the arrangements, because the affected person cannot. For family members who must manage this from a distance, the challenges are enormous. Contact your local Alzheimer's Association affiliate and the one closest to where the affected individual lives. Together, they can help connect you with resource people, organizations, home-care agencies, and supervised living facilities. For a while, it might be possible to manage the affected person with live-in help. This may be a good option in the early stages of the illness, when the person still has enough cognitive function to resist moving out. But as Alzheimer's progresses, and round-the-clock care becomes necessary. You might decide that the affected individual will move in with you. But no matter where the person moves--in with you or into a supervised facility--expect the transition to be rocky. Involve the affected individual as much as possible in planning the move. If the person refuses to move, it doesn't help to negotiate. Simply proceed, with gentle reminders that there is no other alternative. It's normal for caregiving loved ones to feel guilty, ashamed, anxious, and depressed about moving a loved one with Alzheimer's, especially if the person is nasty about it. Remember: You are not abusing or abandoning your loved one. You are doing the best you can to cope with a horrible disease. Expect transition problems. Changes are upsetting to many people who have full control of their mental faculties. Changes tend to be even more upsetting to those with Alzheimer's disease. If the person has moved into your home and has significant adjustment problems, don't face the situation by yourself. Get help. If the person moves into a nursing-home, staff are used to transition difficulties and can handle them. Over time, as the illness progresses, attachments to former surroundings fade.
Preparing To Be A Caregiver
It isn't easy to bring a loved one with Alzheimer's disease into your home. Do not do it impulsively. Those who cope most successfully plan the transition carefully and take a good deal of time--several months--to adjust to the idea and to allow everyone else in the household and extended family to adjust as well.
An excellent link to help you out: Solutions for Living
When To Consider Relocation
Everybody has limitations. At some time, the patient's needs may be more than you can handle, or a behavior problem such as wandering may cause you to risk your health. If the time comes to consider placing the patient in a long-term facility, such as a nursing home, look at the situation realistically, practically and honestly. By acting responsibly in making decisions about care, you are not abandoning your loved one. Your time and devotion will continue to make the patient's life better wherever he or she lives.
In Passing: Those We Must Remember
BHAChambs informed us that a former member and host had a loved one pass. BHBill01 lost his mother.
Keep this family in your thoughts and prayers.
Email, email, We get email
I am new to this support group, and I am very glad to know there is something out there for the support. Having seen my mother go from a very alert person in her 80's to someone that does not even know who I am is a very hard fact to deal with. I find it very hard to deal with the anger when soneone I work with (the people I work with are in their mid 20's to early 30's) says "I understand what your going through" when they don't have a clue what I'm going through. I know this sounds petty, but it makes me very angry. How can I cope with this type of anger?
I WANT TO THANK YOU AGAIN SO VERY MUCH FOR TAKING THE INTREST AND THE TIME AND THE LOVING CARE TO REACH OUT TO SO MANY OF US THAT ARE JUST LEARNING ABOUT THIS DISEASE.I BELIEVE I COULD NOT HAVE MADE IT THIS FAR HAD I NOT LEARNED FROM THIS GROUP WHAT DEMENTIA IS REALLY ABOUT. ALL THE SHARING FROM THE OTHERS HAS LET ME KNOW THAT I AM NOT "CRAZY" AND MOST IMPORTANT THAT I AM NOT ALONE NOW. THANK YOU AGAIN CHARLENE
My husband was diagnosed with A.D. in 1988, and died in 1995 at the age of 65. I know he was being affected by the disease long before 1988. We had been married for 42 years, had both written living wills, become one another's health care proxy's, and discussed what we would, and would not want, if we became ill. Feeding tubes were one of the things we agreed we would never want to use if it became just a matter of keeping us alive. Don was an engineer, a fine athelete, and was in superb physical condition before A.D. struck. What terrible things the disease does to a person physically, mentally, and emotionally. He was in diapers for over a year and a half. During the last six months his balance was terrible and he would often fall when he tried to walk, and not be able to get up. In the last months, he began to eat less and less. When he developed pneumonia and began to refuse food altogether, I knew what he would want . . . knew that I needed to let him go. I stayed with him almost 24 hours a day for 16 days in the N.H. to make sure that no one used any kind of forced feeding, oxygen, or antibiotics. He died very peacefully as I sat by his side telling him it was okay to go . . . Such decisions are so very personal, and ones that each of us must make in our own way, and in whatever way with which we feel comfortable. Just as is the decision of whether or not to use a facility of some kind. It doesn't seem to me that there are "right" or "wrong" ways. It is a tough thing to walk alongside a loved one as he or she disintegrates under our noses, and it seems so important to not feel as though we have to do any of these things one certain way, or the way anyone else does it, or the way anyone else thinks it should be done. With love and respect to all caregivers. Pat
I just wanted to tell you both how wonderful this newsletter was and what a great job both of you are doing. I really look forward to getting this newsletter. It makes me feel connected and not so alone. Thanks again for doing such a fantastic job.
You have done a wonderful job at putting out our newsletter "The Ribbon". Great job !! As a poetry lover, I truly enjoyed having the poetry added, and wanted to Thank you. As this wonderful group of people have helped me through some difficult times, with my Mother, who has Alz., I am sending along a poem in hopes that I can, in return, help others realize they are not alone in this fight against this horrible disease. The first time my Mother did not know me, I was devastated... She just turned her back on me and walked away. This is where this poem comes from... the hurt... the loneliness...and the fear of what the future had in store for both my Mother and myself. God Bless you all, who have shown me so much Love & Support, and Thanks for all the Hugs!! Loraine (WilloRain) "The quiet one"!!!
My name is Cathy I live in Orlando Fl, I just read your story in the"Ribbon" newsletter. I just finished going through the exact same thing with my mother. Who died Feb 4, @8am 1998 and who I miss dearly. I took care of her here in my home for over 2 years. My Mom & Dad moved in with me from Connecticut in Dec 1995. My Father couldn't take care of her anymore by himself. The first thing I did, was tried to get a Dr. (she had been diagnosed with ALZ. 2 years before - they told my Dad to start looking for a Nursing Home!! that's all, no help) Every Dr's Office I called said they were not taking any new patients ( after I said she had ALZ.) Finnaly I called our Local Alzheimers Resourse Center and asked if they could recomend a Dr & they did. He was a Gerientologist (specializing in older people -Geriatrics-) He was also the head of the "Memory Disorder Clinic" AND a professor at local Medical school. I called the office they gave us an appointment for the following week. The first visit was a 4 hour exam he was "wonderful" he checked everything, did blood work & sent her for a MRI test. He diagnosed her with Parkinsons Disease but she did have dememtia /Alzheimers too. We muddled through the last two years with a lot of humor the hardest was the last few months since Sept 97 she's been in a hospital bed in our Family Room & the center of our lives. The Dr is everything..... he made suggestions, ordered a raised toilet seat. then a wheel chair. etc. He ordered Home health Care next, they came once a week to help me give her a bath. little by little it was 2x a week, then near the end 3x a week. All this help paid for by medicare, because the Dr ordered it. You need a Dr that works with you. Don't be afriad to ask questions. But FIND that Good Dr first. I am not sorry about anything I did. She died peacefully in her sleep no feeding tubes, no IV's , no hospital, just love & patience, medicine to keep her comfortable that's all. Good Luck , I hope you have other family members that can help you too.
I wish I had at the last part of my Moms AD the info given today...... it would have helped me, if not her. She had home health PT etc but I think that it would have been nice to have Hospice. She aspirated on ice cream then was found to have pneumonia and just deteriorated and died within hours here at home with her family at her side.........very peacefully. Her last dies were very difficult and it took up to two hours to feed her a single meal. In spite of an air mattress and special nurses she had horrible bed sore on her tailbone. I will miss my Mom very much, but not the conditions that she was living in.......I know now that she is at peace and whole again..............Suzanne
Help!!! To make a long story short, I have taken care of my mom for the last 22 years and she has dimentia now and early signs of alz. She believes I have stolen money from her which is not true, I have financially taken care of her for years. So she called all the rest of my family (4 sisters & 1 brother) and told them this. well all but one knew better, so the one went with my confused mother and had my power of attorney taken away. My mother can put on like she knows exactly whats going on and try to convince people she was the nanny for the Kennedy's when John was president, and so on. Well after a family feud, I told my sister that took p.o.a. to take care of her now, and she half way is. My mother won't speak to me, she is tearing my heart apart and acts like it doesn't even bother her. I don't know what I should do, it's such a mess. We were always so close, and I was the only one for years to take care of her, I know she is not getting the care I used to give, but when my other sister told her I was so upset, she just blew it off, because now finally someone else is paying attention to her besides me, so she is content. I am so afraid something will happen to her before all this is resolved and I have let the two of them hurt me enough. I don't know if I should just stay away until she calls me, or should I go back for more. Please, I am open for any suggestions from anybody. wanda
[all taken from Money Magazine/May 1996]
Karen, when I find the info on Triad, I'll send that on to you. Thanks, Ann found number for Triad....1-888-874-2343 ...is a support program designed to provide information and resources to help the patient, caregiver, and healthcare professional in managing the day-to-day realities or Alzheimer's Disease....is a free educational service sponsored by Pfizer Inc and Eisai Inc. in collaboration with the Alzheimer's Association and The National Council on the Aging. Ann
Thank you for noting my sweet Irish Boy's passing. I have received email from the chat rooms and can't tell you how it helps. I want to stay with the group incase I might be able to offer some help. I also need to help mysellf. Please keep sending my the Ribbon. Susan
Caregivers have something in Common with Geese
When you see geese flying in a "V" formation, you might be interested in knowing what facts scientists have discovered about why they fly that way.
1. FACT: As each bird
flaps its wings, it creates an uplift for the bird immediately
following. By flying in a "V" formation, the whole
flock adds at least 71% greater flying range than if each bird
flew on its own.
Hope you all had a nice Easter, Karen and Jamie