Personal Stories 
Login
Community
| Live Chat |
| Ask the Expert |
| Personal Stories |
For Caregivers
| Symptoms |
| Stages |
| Medications |
| Financial Issues |
| Brain Tour |
Chat
There are chat connections.
There are logon users.
There are chat rooms.
Chatting users:
| Children and Grandchildren |
|
|
| Thursday, 09 April 2009 | |
Hi,Most of you won’t know me since I don’t post very often. This time though I am posting to to tell my story and ask a favor as well. Myself and my young granddaughter are just entering our third year of dealing with my husband's Alzheimr's. He was diagnosed at 65. I am learning as I go on this journey and trying to maintain as stable environment as possible for my granddaughter who lives with us. She has lost so much of the closeness with her grandfather. They used to ride horses, build anything and everything together. He loved taking her back and fourth to school and attending (fathe/daughter dances with her. He loved listening to her stories. These days, he doesn't ride and has lost interest in building things. Listening is not something he does well anymore. My granddaughter found a wonderful breath of respite and understanding in a new first of it's kind camp found by Tracy Mobley. Words are not enough to explain the deep and lifelong connections she made at the camp last year. She was fortunate enough to get a scholorship. It is for this reason I have promised to help Tracy (Young Hope) in funding raising this year for Austin’s Camp Building Bridges. Some of you may already know Tracy Mobley. She has been a leading advocate for EOAD. She has been a true inspiration to me and many others. From the beginning she made it her mission to step up and set her priority on raising awareness, education and support. Her primary focus and her personal dream was “Camp Building Bridges” Now renamed Austin’s Camp Building Bridges” Tracy started the “Can You Spare a Dime Campaign” last fall for Camp Building Bridges. Both the campaign and the camp were a huge success. Through shear will and determination she was able to obtain grants from prominant foundations and finally get the full backing of the National Alzheimer's Association. I know all of us have suffered from the divesting effects of AD and yet we manage at times to gain comfort and strength from others. Some in support groups, some on message boards and sites such as this,others in close friendships.Don't our children and grandchildren deserve the same? Let’s help to keep the dream going and show Tracy we want to Pay it Forward and make sure our children and grandchildren continue to have the support and understanding they need as well. I am asking each person on this board to donate as many dimes as they can towards this summer’s camp. If possible recruit your friends into rolling dimes and donating. Just think if each of us could get just send one roll of dimes and recruit our friends and family into rolling dimes that could be a real show of support and a great gesture for many kids that have to live with this disease daily as do each of us. Last years camp had kids from New York, South Carolina, Texas, Oklahoma, and California. We can spread this campaign and the benefits of Austin’s Camp Building Bridges across the country.
Welcome to Austin's Camp Building Bridges Austin's Camp Building Bridges is a respite camp for young teens ages 13-17 that have parents/grandparents in the home with Alzheimer's Disease or related dementias. Camp Building Bridges is funded by grants and public donations in the hopes that this camp can bridge nation wide in the future to make the camp more accessible to other families. Camp Mission To provide a respite camp for young teens away from home to receive educational support in regards to Alzheimer's disease or related dementias. This camp will also empower them to connect with their peers to form their own support network to allow them to be successful individuals in dealing with these diseases. Our Vision Our vision for Austin's Camp Building Bridges is to make this camp accessible to ALL young teens between the ages of 13-17 that wish to be apart of it. With the help of scholarship funding this helps to take away part of the financial hardship that is already embarked on families by Alzheimer's disease. This program will give the kids their educational resources to help them to be better caregiver's or prepare them to be caregiver's whatever their case maybe. It will also groom them to possibly be Advocates for Alzheimer's disease in the near future. And lastly, it will give them a much needed break just as adult caregiver's, a chance to still be a kid while the opportunity is there. History Austin's Camp Building Bridges is a Project that was inspired by our now 14 year old son Austin. He was only 7 years old when I was diagnosed with the cruelest of all diseases which is Younger-Onset Alzheimer's Disease/FTD. During these almost 7 years since my diagnosis we have served as very active Advocates for Alzheimer's disease and it was at the sight of seeing the struggles and challenges that my own son was going through that brought to mind that we have no support forums or support networks for children that have parents with dementia. Through his struggles I knew this had to be changed. Austin's Camp Building Bridges will help young teens build healthy relationships through these diseases as well as educate them more about what they need to know to not only help themselves but to help others. An added bonus of the camp is that it gives them 6 days away from home, 6 days away from dementia, 6 days to not have to worry about Mom & Dad, 6 days to just be themselves. Cost The hopes of Austin's Camp Building Bridges is to assure that no child is held back from the program due to financial needs. Through grants and donations from around the world each child that wishes to attend is awarded a scholarship to cover their tuition. There is a non-refundable registration fee of $50.00 that is required to assure your teen's spot at the camp. If you have more than one child interested in attending the camp the registration fee is $35.00 for the second child, third child, etc. For families that CAN afford the tuition, the cost is $600.00 plus the $50.00 registration fee. Please keep in mind that if you are able to pay for your child to attend camp, the scholarships allow a child that is not so fortunate to attend as well. Camp Goals Turning Fear and Sadness Into Knowledge 1. To allow Kids/Teens ages 13-17 to be given the complete knowledge they need to help them understand what is happening to their parent or grandparent. Turning Aloneness Into Peer Support 2. To allow Kids/Teens to meet and form with their own peers their own support network for continued support from one another. Turning Their Atmosphere Into Relaxation 3. To give Kids/Teens that are affected by dementia of a loved one the opportunity to be given a respite for a brief period and just be themselves. Camp Criteria We are not qualified nor capable of handling handicapped children. This is a respite camp only for those that have a parent/grandparent with Younger-Onset Dementia. Eligibility for Camp Building Bridges is pretty simple 1. Young teens between the ages of 13-17 (If you will be turning 13 years old within this calendar year, you will be accepted to the camp program) 2. Have a parent or grandparent with Younger-Onset Dementia 3. You are seeking support in dealing with emotional issues that come along with how the disease affects your loved one. Younger-Onset Connections The Younger-Onset Connections is a list of Younger-Onset Families across the US that have been affected by younger-onset dementia. Many of these families still have young children in the home. This list will give you access to families just like yours to contact through e-mail that may become a part of your support system. To be apart of this list you will have to sign a release form to be apart of the Connections system. To be apart of Younger-Onset Connections contact JoAnne Webster, Younger-Onset Coordinator of the Oklahoma/Arkansas Chapter http://www.alz.org/alzokar/. You can also contact her by calling the Oklahoma Chapter at 918-481-7746 or toll free 1-800-272-3900 Alzheimer's and Kids Alzheimer's disease is now robbing more than a quarter million Americans of their childhood. More than a quarter million American children age 8 to 18 are currently caring for loved ones with Alzheimer's. http://actionalz.org/alzheimers_and_kids.asp Any donations are tax deductible and should be sent with specific instrustions that it is for Camp Building Bridges to:
Kate Scruggs, You can also visit the tribute page on the Alzheimer's Website Austin's Camp Building Bridges to donate on line.
Thank you so very much for your time
|
| Get Well Soon Dad |
|
|
| Wednesday, 08 April 2009 | |
|
My Dad is 81. I quit my job in 2005 to take care of him full time. Recently he scored 11 on his MMSE however, I knew the results would be lower than six months ago from what is going on around the house. For so long, he maintained in the mid-twenties so we have to be grateful for that. I fear this year will begin the down-hill run. Six weeks ago he went to an Alzhiemer Day Club where they played 'toss the beach ball'. When I picked him up I was told by the supervisors that Dad was very competative and hardly let anyone in the group touch the ball. He ran from one side of the room to the other to hit the ball, keep it from others, and keep it in the air. The next day, he could hardly walk. He was in pain so I took him to the doctor after giving him Advil. We got to the doctor and he denied being in pain and stated he felt great!! When we got home, he asked why we couldn't take him to see a doctor about his back pain!! Sound familiar anyone? Long story short.... the second MRI shows a herniated disc. Even sedated he wiggled through his first MRI so we had to schedule one with general anesthesia, he pulled out his IV during that one. He is now in a wheelchair and hates it. When the pain meds kick-in he starts pacing around the house looking out all the windows. Tomorrow we go in for an epidural. I wish they could give me one too! Please wish us luck. I want my Dad out of pain so I can be pain-free too. Thanks for being there for us. Rain |
| Raising My Parents |
|
|
| Saturday, 21 March 2009 | |
|
This is the title of the book I am writing. It is basically about my trials, tribulations, laughter, tears and some important information on caring for my mother,, who has alzheimers. Some of the things I had to go through with certain agencies to take over my mother's finances, bills, etc. have to make you laugh or you will certainly cry. If you are interested in this book upon it's completion, please send me an e-mail. LindaM |
| My Dad |
|
|
| Thursday, 26 February 2009 | |
 My Dad who is now nearly 91 moved in to live with me early in December 2008. Now I knew that Dad had some problems just did not realize how far along he was. Ten years ago we didn't really say to much about Alzheimer Disease. A lot of what we as his kids just put off as Dad getting old and cantacourous was really much more. The first couple of months I did not have any help in the house with Dad and trying to figure out what all was really going on. I have worked in healthcare for 30 years, but I was the head of maintenance not a caregiver, so I have been exposed to AD patients or residents but not to provide daily cares. This is new to me. Dad is moving into step six of AD. Luckily he has not gotten combative but I also have learned when to just back off, and that is why he has a beard now. Shaving, or getting wet is not something he likes. Everythlng is a "mess". To much for him to deal with. Dad is a retired Pastor witha Doctorate in Theology and he cannot harldy finish a sentence now. I had Dad on a pedestal a good part of my life and now I have to clean his bottom. I do now have sitters for him through the day so I can work. Tried to take him with me on some jobs but is quite nearve wracking. I worry about him. He does at times seem happy to just sit in my truck. He is now getting up after a couple of hours of sleep and ready for a new day, as I am getting into bed. so far by at lest midnight he is down for the rest of the night most of the time. He is not interested in much of anything. He will watch some TV especially anything with short zingers or a lot of color and movement. He doesn't really know what is going on but does occupy his time.His eyes are getting worse especially in the dark, so cannot go out much at night for fear of tripping and falling. He wont carry a cane for balance.he has always been an independent person. I am doing well but does get very stressful at times. |
| Not Who I Should Be |
|
|
| Sunday, 22 February 2009 | |
|
Today I wasn't the daughter I should be. Frustration overcame me and I yelled at my mother. I slip slide down the rabbit hole and expect logic to pop up, a blazing torch in the darkness. Instead I reach the door in the dark finding I am too large or too small. My mother has become victim to this horrific disease that gives her enough memory to make her fearful, and not enough to know where she lives. I am aware that my mother doesn't understand and is victimized by Alzheimer's disease. It is soooo difficult to see her this way and I am afraid every time I have to leave her that she will do something to hurt herself. My mother still has control of her finances and is at a stage where she believes she is capable of doing everything. She believes that everyone wants whatever she has. I am not financially able to pay for all the care she needs and she isn't aware that she needs it. I feel like the proverbial doctor that has been imprisoned by the inmates in the asylum. I have to leave the area for nine days. I told her that she has to pay a friends daughter to help her at least several days while I am gone. She goes balistic and swears that everyone just wants her money and she has managed to take care of herself all of her life. The sad reality is that my mother is overwhelmed by the choices in the kitchen and cannot fix her own food. She cannot watch tv because it has become too confusing. She delusionally believes that she does all the things she used to and I can't get her to understand she has to have help. I spend eight to twelve hours a day with her and I vascillate between all the stages of grief, sympathy and love. I pray for both of us. I am trying to embrace my mother's tantrums along with her smiles. I am learning (albeit slowly) to give more of myself and meditate on patience. I will be the best that I can each day and treasure the moments that she knows who I am, because I know she eventually won't. I will try to be the daughter I should be tomorrow. |
| My husband has been diagnosed. |
|
|
| Tuesday, 20 January 2009 | |
| I notice somebody posted a message on December 29th that they were caring for their husband and would like to be in communication with sombody else caring for their husband. Well, l am and I would love to communicate with you! Feel free to email me at This e-mail address is being protected from spam bots, you need JavaScript enabled to view it |
| Taking care of spouse |
|
|
| Sunday, 18 January 2009 | |
|
This is for the lady looking for someone taking care of spouse. My husband was diagnosed a little over two years ago with dementia at age 75. I'm not sure that I am a care giver, as I feel that he can still pretty well take care of himself. His main problem is with language. He just can't seem to put his thoughts into words. He also has a lot of problems with numbers. However, every month, we recieve a payment on a loan that we have made, and he always records it--sometimes with a little difficulty, but usually looks at how he has done it before and figures it out. He also still drives; usually doesn't go out of town without me along, but has been talking recently about visiting his sister in another state (about five hours away) and I really feel like he would be okay. One of the problems is I can't get him to carry a cell phone, or learn how to use it. I got one for both of us last Spring, and the only time he has it with him is when I insist that he take it. Then instead of carrying it in his pocket, he ususlly leaves it in the car and has yet to ever answer it. I could go on, but will leave it for another time. |
| My Mom |
|
|
| Friday, 09 January 2009 | |
|
My name is Betsy, and I am a 41 year old woman caring for my 82 year old mother, who has multi-infarc dementia. I live with my mom full time, since I am on disability due to a severe non-verbal learning disability, depression, and anxiety. I have an older brother who lives in another state, and an older sister who lives an hour away (not far enough). Neither one has any desire to take care of her. My brother has plenary guardianship of her and her estate. He is also her power of attorney. She was diagnosed around 3 or 4 years ago. She was forgetting to pay bills, not putting all the ingredients in recipies, etc... What followed next has been a nightmare. My mother ran up a substantial credit card bill, and I did not catch it untill it was too late. I called my brother who was managing our mom's money to ask him to pay the bill. He refused. I was advised by my therapist to call the local Office of Aging. BIG MISTAKE!! Our local OOA is not well run, to say the least. They would not listen to my side of the situation. In the end I was accused of taking advatage of my mom financially and neglecting her. They came up with these ideas during the investigation through talking to my siblings. I am a very contientious person, and I would never dream of using my mom's money the way my siblings think I do. My siblings do not understand my disabiltiy, and they think they can say whatever they want to about me. A year ago, my brother was awarded guardianship after mom was determined to no longer be competent enough to handle her own affairs. (He had already been handling her money for around 22 years.) Mom has sufficient money in investments to take care of herself properly, cover her bills, all of her daily needs, and even most of what she would want. However, my brother only allows her enough money each month to barely get by. He refuses to have basic things taken care of around the house, doesn't always pay her doctor bills, even complains when we want to buy paper towels! We have a part-time care giver who comes in three times a week who does a wonderful job helping me take care of Mom. My brother complains about that bill, as well. My brother has never been very nice to me, and treats me like a child. If he doesn't get his way, he threatens to take her out of the house that she has lived in for 22 years, and put her in a home in his state 800 miles away from her friends and her twin sister. He also feels that because that he is her guardian that he can tell me what to do, and get involved in my business (finances, how I lead my life, my health, etc..) This is just wrong!!! I am very concerend that Mom and I may lose our home, due to the fact that my brother may have mismanaged her money, and is trying to hide that fact. Also, my brother and his wife have been trying to push us out of this house for the last 13 years. We desperately need some help in how to deal with this. We can't even get a lawyer because of my brother's control over her money. What do we do , and where do we go? If anyone can help or make any suggestions, please contact me at This e-mail address is being protected from spam bots, you need JavaScript enabled to view it Thank you. |
| caregiver |
|
|
| Wednesday, 07 January 2009 | |
|
My mother was diagnosed with alz in 2007 and has lived with me ever since; I'm single & have no other family members to help support caregiving. I retired from my job in April 2007 @ age 57 to take care of my mom. I made this decision because God sent 3 angels my way...I had a very stressful, demanding job and I could tell my mom was so lonely. Today, when leaving the house to exercise (try this 4 time/week), the neighbor's son came to the car and told me he had seen my mom down the street on the side walk taking mail out of a neighbor's mailbox. Oh NO, now she is roaming down the street. That is not good. So now I am thinking I need to consider placing her somewhere. |
| old cowboy Joe |
|
|
| Thursday, 01 January 2009 | |
| My dad was 51 years old when i was born, he was a truck driver and a real north east cowpoke! he never gave his name to any other offspring but me and i think he had some others! but back in the day the 50s no DNA so who knows? why my mom loved him beats me. she was a smart nurse and could have had many doctors of her choice but dad got her! THE OLD REDNECK!! A JERSEY REDNECK! yah I'm one too like father like son! um lets hope only in way of life not with the same DNA!this man did every thing him self, fix cars plumbing electric work for just a few! ok he was a jack of all trades! now when i was growing up he would do some strange things!! he would turn mad at a drop of the hat! what we did not know he had it!! but in 1980 we took him back up north to visit family in N.J. we had moved him and mom to FLA. IN THE EARLY 70S but the part of NJ he was in was well known to him so when he got lost we knew something was wrong! yes we found him walking about 3 miles from my home and he gave some story of what he was doing "but just a story no fact" then in the early 80s we moved back to FLA near my mom and dad "THAT WAS THE GOOD NEWS" but he went for another walk! 3 days and nights! we had the Tampa tv stations asking for folk to look for him and a Tampa cop found him siting at a bus stop in down town Tampa!he told the cop he was going to my aunts house in Lindhurst NJ! the cop ask him where he was he said "Newark" Newark new jersey! but you see back then we had no help with this thing so we did what we could and he ended up in a nursing home till his passing in 1987. yes there is lots more to this story but this is all i can post now , you see old Joe1904 was my dad! |
Results 1 - 20 of 35
