On Alzheimer’s Action Day, “Alzheimer’s Journey” was launched as a new section to my www.lsfisher.com website. Journey is written for caregivers, those with dementia, or for others who want basic information about Alzheimer’s. Knowledge is key to coping with Alzheimer’s.
When my husband, Jim, was diagnosed with dementia, we were at the bottom of the Alzheimer’s learning curve. Neither of us had a close relative with Alzheimer’s and really knew nothing about the disease.
I thought Alzheimer’s was forgetfulness that developed in old age, and couldn’t really understand why my forty-nine-year-old husband was being told he had this condition. Still, the rudest awakening for us was to learn that although medications were available, they did not slow the progression of the disease. Yes, medication could help with symptoms, but the inevitable decline could not be avoided.
I began to learn everything I could about Alzheimer’s by exploring every resource I could find. I read every book I could find on Alzheimer’s, watched documentaries, visited countless websites, attended caregiver training (for professionals and family caregivers), forums, conferences, support groups, workshops, educational symposiums, and various other learning environments.
Every scrap of information helped me cope with a disease that wreaked havoc on life as I knew it. Once Jim and I began the Alzheimer’s Journey nothing was the same.
An Alzheimer’s diagnosis is like any other crushing blow in life. Once I worked through the stages of grieving for what should-have could-have been, I decided that I just didn’t have the personality to give up and say, “Okay, Grim Reaper, you win.” My time was much better spent with living than with dying. After all, we are captive to the human body we inhabit and perfect health is the exception, not the rule.
My plan of action: (1) Learn as much as I could about Alzheimers, (2) Test for any treatable conditions that might cause dementia symptoms, (3) Treat any other health problems to maintain quality of life, (4) Accept the personal responsibility to ensure that Jim received the best care whether he was at home or in long-term care, and (5) Love him for the person he was at that particular time without mourning the loss of the man he had been or worrying too much about the man he would become.
It helps to take one day at a time, or as one caregiver said, “Sometimes I have to take one minute at a time.” Talking to other caregivers kept me from feeling all alone. I learned from their mistakes, and they learned from mine. By supporting each other, we became stronger spiritually, and made much better caregivers. Sometimes, it’s hard to attend a support group meeting, and the group may not have a meeting scheduled when a crisis occurs. Between group meetings, I found it easier to go online and post my questions, frustrations, and fears to a forum.
Alzheimer’s Journey will have a forum where people who have been touched by Alzheimer’s can communicate with each other. It will be a virtual support group. You will be able to view the forum without joining. If you want to join in the conversation or want input on a problem, create a user name and register.
Alzheimer’s Journey will be an Alzheimer’s resource with articles, news updates, and a forum. Everything will be in an easy to find format and you won’t have annoying advertisements blocking your view of the screen. I also won’t take you in endless loops trying to build “clicks” to increase advertising revenue. This site is for you, not for profit.
Copyright © September 2011 L. S. Fisher
When my husband, Jim, was diagnosed with dementia, we were at the bottom of the Alzheimer’s learning curve. Neither of us had a close relative with Alzheimer’s and really knew nothing about the disease.
I thought Alzheimer’s was forgetfulness that developed in old age, and couldn’t really understand why my forty-nine-year-old husband was being told he had this condition. Still, the rudest awakening for us was to learn that although medications were available, they did not slow the progression of the disease. Yes, medication could help with symptoms, but the inevitable decline could not be avoided.
I began to learn everything I could about Alzheimer’s by exploring every resource I could find. I read every book I could find on Alzheimer’s, watched documentaries, visited countless websites, attended caregiver training (for professionals and family caregivers), forums, conferences, support groups, workshops, educational symposiums, and various other learning environments.
Every scrap of information helped me cope with a disease that wreaked havoc on life as I knew it. Once Jim and I began the Alzheimer’s Journey nothing was the same.
An Alzheimer’s diagnosis is like any other crushing blow in life. Once I worked through the stages of grieving for what should-have could-have been, I decided that I just didn’t have the personality to give up and say, “Okay, Grim Reaper, you win.” My time was much better spent with living than with dying. After all, we are captive to the human body we inhabit and perfect health is the exception, not the rule.
My plan of action: (1) Learn as much as I could about Alzheimers, (2) Test for any treatable conditions that might cause dementia symptoms, (3) Treat any other health problems to maintain quality of life, (4) Accept the personal responsibility to ensure that Jim received the best care whether he was at home or in long-term care, and (5) Love him for the person he was at that particular time without mourning the loss of the man he had been or worrying too much about the man he would become.
It helps to take one day at a time, or as one caregiver said, “Sometimes I have to take one minute at a time.” Talking to other caregivers kept me from feeling all alone. I learned from their mistakes, and they learned from mine. By supporting each other, we became stronger spiritually, and made much better caregivers. Sometimes, it’s hard to attend a support group meeting, and the group may not have a meeting scheduled when a crisis occurs. Between group meetings, I found it easier to go online and post my questions, frustrations, and fears to a forum.
Alzheimer’s Journey will have a forum where people who have been touched by Alzheimer’s can communicate with each other. It will be a virtual support group. You will be able to view the forum without joining. If you want to join in the conversation or want input on a problem, create a user name and register.
Alzheimer’s Journey will be an Alzheimer’s resource with articles, news updates, and a forum. Everything will be in an easy to find format and you won’t have annoying advertisements blocking your view of the screen. I also won’t take you in endless loops trying to build “clicks” to increase advertising revenue. This site is for you, not for profit.
Copyright © September 2011 L. S. Fisher
That is very nice. My grandfather had dementia and I've decided to do anything possible to help other people get through this. That's why I and some friends have developed an innovative software solution that provides communication support and interactive games for the elderly and people with dementia.
ReplyDeleteI love your site!!! I have joined the forum, but haven't posted anything yet. Your site is so GREAT. It has everything on it. I am slowly trying to get one up, but I don't have all the resources you seem to have and know. I'm not sure what all to put on it. So one day hopefully soon it will be up and running. I don't think we can have enough info out there right now. =) Have a great day, and as always I love reading your work. It's a huge inspiration for me.
ReplyDeleteThank you Dementia Life and Shery. I hope others find their way to the site.
ReplyDeleteI love your post. My grandmother is having some memory problems as she is aging and it is very difficult to watch.
ReplyDeleteI read about the Alzheimer's Research and Prevention Foundation, which is doing a lot of innovative research on Alzheimer's disease. Dr. Dharma Singh Khalsa (who started the foundation) has published many books and Im telling you- this man will change your life. I recommend looking into some of their research not only if you know someone with Alzheimer's but if you are interested in preventing it yourself.
http://www.youtube.com/watch?v=eVETSxQADy0
Great post. If you would like information on the current timeline of Alzheimer's research please visit www.mullanalzheimer.com
ReplyDeleteAs I run a homecare agency (Premier Homecare Services), we have been serving many families with alzheimer's. I often feel that there is a tremendous amount of stress families enduring. Your blog is an excellent resource for our caregivers. I am forwarding the link to all of my employees. Thanks for sharing your experience and knowledge with us! Keep up with the great work!
ReplyDelete