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The Ribbon - Care for Caregivers
Guestbook Archive
Entries 41 through 50

Record 50
Name: Kimmi
Website: Women & Children - formerly
Referred by: Just Surfed On In
From: Ma
Time: 1999-07-25 19:01:01
Comments: Wonderfully informative site.An Asset to the net.Thank you for all your hard work..It shows..Have a great day Kimmi

Record 49
Name: chris hey
Referred by: Just Surfed On In
From: Portland, me.
Time: 1999-07-17 04:40:18
Comments: I think this is very important and valuable work that you are doing.

Record 48
Name: Karen Henderson
Website: Caregiver Network
Referred by: From a Web Ring
From: Toronto, Canada
Time: 1999-07-10 21:14:53
Comments: I started Caregiver Network ( because of my father who suffers from vascular dementia, among many illnesses. Therefore I was delighted to find your site but have not seen any guidnace as to how to use info on members, login etc. I also clicked on several back issues of your newsletter and only saw a blank screen after the download.

Record 47
Name: Becky Hartman
Referred by: From a Friend
From: baltimore
Time: 1999-07-09 23:02:25
Comments: It was great meeting you at Charlie and Nancy's on the Fourth. Good Luck with the Naval Academy summer!

Record 46
Name: Amy
Referred by: AOL
From: San Francisco and New York
Time: 1999-06-29 00:32:27
Comments: I would like to subscribe to the Ribbon. My mother, who is 83, has Alzheimer's. She was diagnosed almost four years ago, and is reaching an end stage, mostly due to malnutrition. She weighs 70 pounds and requires coaxing to eat a few bites. She almost died last week from not eating and also might have had a low-grade pneumonia. She was hospitalized for three days. Curiously, while she can barely speak at times, she can read single words and can show that she understands what the words mean. For example, she'll read "foot" and point to her foot. She has lost most of her English, but can speak a little Mandarin and, best of all, Shanghainese, the language of her childhood. This presents difficulties for me, since I don't understand that dialect. But I use my intuition a lot more now to understand her and realize this is what I should have done years ago -- we would have gotten along a lot better, if I had. I know that taking care of a spouse and younger loved one with AD is much more difficult, frustrating, and tragic than what I am going through. Financial burden also destroys many caregivers' lives. I sometimes feel guilty and always very, very lucky that I have the means to take care of my mother. I also have access to friends who are physicians and even researchers in AD. More important, I have really been blessed in that my mother has never been happier in her life since getting Alzheimer's. She's forgotten the tragedies of her life, of which there are many. And for that reason, I don't often feel sad about what is happening to her or our family. We are all closer as a result. I am losing her, but I am appreciating the opportunity to care for her. I've never diapered a baby, and I don't even mind that part with my mother. Though my mother can be difficult, obsessive, and at times delusional about the usual things (supposed infidelity on my husband's part, his imagined theft of my money, etc.), she often claims she has no worries, loves where she lives, and is happy. She says she loves us -- words she has never ever used before her illness. She and I had a difficult relationship. In one lucid moment last year, she told me she had done many terrible things to me and could not remember what they were, but hoped I had forgotten them, too. You can bet I cried then. I am also lucky in that I have lots of support from family and friends. Actually, I'm not shy in accepting help. If people ask if they can help, I don't act like it's a polite gesture. I ask them to pick her up at her residence and bring her to a restaurant where we can all gather, have a good time, while being with her. Though I have older siblings, I am the primary caregiver, in the sense that I take her to her doctor appointments, monitor her medications, her moods, her needs, and pay for all her costs beyond what social security covers. My husband is also very supportive and helps me with my mother--taking her to the hospital, lifting the wheelchair into the car, etc. He has managed all her financial needs--power of attorney, tax returns, stocks, and has it arranged so that everything goes to my siblings upon her death, since he feels they could use the money more than we. I also view this disease as a less painful way for my mother to leave this world than some alternatives like cancer. My father and brother both died of brain tumors six months apart when I was 15. To me that was a living hell, watching them go through multiple surgeries, be in agony on chemo, then lose their mental abilities so young, and finally dying in horrible ways covered with bedsores. My father, who once was brilliant and handsome, had dementia and was conscious almost to the end. My brother, age 16, a prodigy, was in a coma for five months, completely skeletal and bald, before my mother finally agreed to remove feeding tubes. She also had to request that feeding tubes be disconnected from my father. For that reason, she told me years ago that, should she become ill with a terminal disease, we should not use artificial means of support like feeding tubes. The tubes did not help them, and it was the most terrible thing to have to decide to discontinue using them. While my mother has never been afraid of death and openly spoke of it before she was ill, she has never been able to acknowledge that she has AD, and we have not tried to convince her that she has it. We go along with all her delusions. If she claims she drove to the Himalayas, we ask how the road conditions were and which car she took. She is living in a beautiful Assisted Living Residence, which she loves. To get her there, we had to say she had the "number one room," and that it was usually very expensive, but we got a huge discount because she was so small. The cost, we lied, was the same as her social security payments. Believe me, the desire to get both the best and a bargain never dies! Her medical care is via an HMO, for which she worked as an L.V.N. for many years, hence, all costs, medicines, tests, hospitalization, doctors' visits, even wheelchair, etc. are entirely free. Again we are very lucky, for she has excellent care from an internist and a psychiatrist on a regular basis. At times they see her weekly, but usually it's monthly. I heard about this newsletter through the AD board on AOL. I look forward to getting information and support like others. But I'll also try to pitch in with the same when I can as well. Amy

Record 45
Name: Tammi Fort
Referred by: Just Surfed On In
From: San Bernardino, CA
Time: 1999-06-20 06:43:38
Comments: Thank You for your site, I havent had a chance to read many articles but I plan to try and read them all, my father has just recently been diagnosed at the age of 62, this has been difficult for me to accept but I know my mom can't do it alone so for her I need to accept what will inevitibaly happen. Your site and others like it make things just a little easier. THank You

Record 44
Name: Brandon
Website: Brandon's Domain
Referred by: Just Surfed On In
From: Cali
Time: 1999-06-06 22:28:12
Comments: This is an awsome page it is well organised and looks professional I droped in to say thanks to Kevin for helping me out while I am making my page because I only started making my page 5 days ago and I am still learning and he has helped all of luck to Kevin and keep your page runing. If you want to check out my site just click the link above

Record 43
Name: lorraine Baptiste
Referred by: AOL
From: brooklyn, ny
Time: 1999-05-19 11:54:45
Comments: A friend told me about this web site. I would like to be placed on the mailing list so that I can receive the newsletters. Thanks

Record 42
Name: Robin
Referred by: From a Friend
From: Somerset, CA
Time: 1999-04-14 19:28:46
Comments: Thank you! My family is dealing with my grandmother who is still at the stage where she seems "normal" and "capable" to those in the outside world; however, those of us inside her world know better. What a relief to find somewhere to reassure our own sanity as we deal with this heart break.

Record 41
Name: Barb Davis
Referred by: AOL
From: Michigan
Time: 1999-04-10 03:35:11
Comments: My Mother was Dx with Alzheimers Disease at the age of 52. She has been in a nursing home for 3 years now. She will be 61 this month. This disease is horrible - I have not had any support other than family - I am greatful that I have found many people on line to talk to that are going through the same thing that my family is. I am thankful that I was given your web site. There can never be to much support or information on this aweful disease! Please lets all stick together!

Records 31-40 | Guestbook Main | Records 51-60

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