I was reading an article at Medical News Today that makes me very excited! America's Recovery and Reinvestment Funds are being used to fund promising research into efforts to treat and understand Alzheimer's Disease. The National Institutes of Health has chosen research that holds out hope for success.
To read the article in it's entirety go to "Recovery Funds Advance Alzheimer's Disease Research" dated 26 Nov 09. http://www.medicalnewstoday.com/articles/172201.php
Monday, November 30, 2009
Sunday, October 18, 2009
Coach Broyle's Playbook for Alzheimer's Caregiver's
I was watching Dr Phil the other day, one of his guests was Coach Frank Broyle, his daughter Betsy, and granddaughter Molly. Coach Broyle and his wife Barbara were married 50 years when she was diagnosed with Alzheimer’s in 1999.
Molly said:”Her death gave birth to our mission and her legacy, to provide desperately needed resources to those who care for Alzheimer’s patients. Pop felt he could use his positive influence to help others."
He wrote the book “Coach Broyle’s Playbook for Alzheimer’s Caregivers” to give individual’s the support and help we need when you start taking care of a loved one and don’t know what to expect. His book goes a long way to help caregivers. This book has been translated into a number of languages.
Coach Broyle on his website generously allows individuals to download the book free of charge. What an amazing gift. What an amazing testament to his love for his wife Barbara.
Dr. Phil interview with coach Broyle, daughter and granddaughter: http://drphil.com/slideshows/slideshow/5323/?id=5323&slide=1&showID=1329&preview=&versionID=
Coach Broyle’s website http://www.alzheimersplaybook.com/
Molly said:”Her death gave birth to our mission and her legacy, to provide desperately needed resources to those who care for Alzheimer’s patients. Pop felt he could use his positive influence to help others."
He wrote the book “Coach Broyle’s Playbook for Alzheimer’s Caregivers” to give individual’s the support and help we need when you start taking care of a loved one and don’t know what to expect. His book goes a long way to help caregivers. This book has been translated into a number of languages.
Coach Broyle on his website generously allows individuals to download the book free of charge. What an amazing gift. What an amazing testament to his love for his wife Barbara.
Dr. Phil interview with coach Broyle, daughter and granddaughter: http://drphil.com/slideshows/slideshow/5323/?id=5323&slide=1&showID=1329&preview=&versionID=
Coach Broyle’s website http://www.alzheimersplaybook.com/
Monday, October 12, 2009
Who's Reality Is It?
Jacqueline Marcell on her blog posted "Top 10 Dementia Eldercare Recommendations"
#6 When dementia surfaces, live in your elder’s reality of what is true for them at the moment. Don’t argue, question, or try to force logic or reason. Agree and use calm non-threatening body language, while you distract and redirect their attention to things they are interested in. Get them reminiscing about the old days, capitalizing on their long-term memory.
I think this is such an important recommendation. It was hard in the beginning to realize that my reality and my Mother's reality were quite different after she got Alzheimer's. I eventually figured out it did absolutely no good to argue or try to change her reality.
I read several of Jacqueline's blog entries and she is an eloquent writer who comes across with great compassion and personal experience.
Until recently I hadn't made the connection of behavior problems and mirrors that some people struggle with. When people with dementia look in the mirror they see an old person, in their mind they are 20-30 and expect to see that reflection.
It would be like walking into a sci-fi movie; being your age and seeing someone else looking back at you in the mirror. How very terrifying it must be to them.
We used to play peek-a-boo in the mirror. My mother loved that game and was happy playing it. I would guess by then she had reverted back in her mind to a very young person, and so the mirror was someone to play with not fear. But I can remember her asking - "Who is that?"
But I can remember when I was little how she used to play peek-a-boo with me. I can remember mom telling me I used to ask about the other little girl. She said I would try to look behind the mirror to find her. Looking back I think my mother wondered about the person looking back at her.
#6 When dementia surfaces, live in your elder’s reality of what is true for them at the moment. Don’t argue, question, or try to force logic or reason. Agree and use calm non-threatening body language, while you distract and redirect their attention to things they are interested in. Get them reminiscing about the old days, capitalizing on their long-term memory.
I think this is such an important recommendation. It was hard in the beginning to realize that my reality and my Mother's reality were quite different after she got Alzheimer's. I eventually figured out it did absolutely no good to argue or try to change her reality.
I read several of Jacqueline's blog entries and she is an eloquent writer who comes across with great compassion and personal experience.
Until recently I hadn't made the connection of behavior problems and mirrors that some people struggle with. When people with dementia look in the mirror they see an old person, in their mind they are 20-30 and expect to see that reflection.
It would be like walking into a sci-fi movie; being your age and seeing someone else looking back at you in the mirror. How very terrifying it must be to them.
We used to play peek-a-boo in the mirror. My mother loved that game and was happy playing it. I would guess by then she had reverted back in her mind to a very young person, and so the mirror was someone to play with not fear. But I can remember her asking - "Who is that?"
But I can remember when I was little how she used to play peek-a-boo with me. I can remember mom telling me I used to ask about the other little girl. She said I would try to look behind the mirror to find her. Looking back I think my mother wondered about the person looking back at her.
Sunday, October 11, 2009
New Medical Findings
I read two articles that are examining new research on Alzheimer's Disease. In the first article "The Protective Role For Copper in Alzheimer's Disease" published at Medical News. The research suggests that copper may play a role in preventing the formation of and accumulation of plaques in the brain. New studies are being planned for the future.
The other article "Enzyme May be Key To Alzheimer's-related Cell Death" "A Purdue University researcher has discovered that the amount of an enzyme present in neurons can affect the mechanism thought to cause cell death in Alzheimer's disease patients and may have applications for other diseases such as stroke and heart attack."
There is a lot of promising research going on. Hopefully there will be effective treatments developed. It is important to encourage our elected officials and others to support research and treatment for neurological disease's.
The other article "Enzyme May be Key To Alzheimer's-related Cell Death" "A Purdue University researcher has discovered that the amount of an enzyme present in neurons can affect the mechanism thought to cause cell death in Alzheimer's disease patients and may have applications for other diseases such as stroke and heart attack."
There is a lot of promising research going on. Hopefully there will be effective treatments developed. It is important to encourage our elected officials and others to support research and treatment for neurological disease's.
Sunday, October 4, 2009
Dental Care
One of my biggest regrets and frustrations was my Mother's dental care. She often fought me about washing her teeth. And so sometimes I just gave in. As the disease progressed she ground her teeth more. I tried to find dentists to look at her teeth and ran into problems because of her advanced AD and the fact that many dentists would not take medicaid and she had no other health insurance.
After I was hospitalized Mom spent her last 6 months in a private care facility. Mom had been diagnosed with thrush and she was having problem with her teeth. The pain in her teeth contributed to her not eating. When Mom was receiving hospice I talked to one of the nurses about the problems with her mouth. The nurse suggested talking to the doctor and asking about a compounded prescription for "Magic Mouthwash", (a compound that includes viscous lidocaine, nystatin, benadryl and sometimes corticosteroid). This compound seems to offer relief and may be worth discussing with your own doctor or dentist.
Having 20-20 hindsight I would encourage you to seek dental care early and try to find someone who can work with people exhibiting symptoms of dementia. Daily care is so critical.
The Alzheimer's Society fact sheet 448 Dental Care and dementia is a great resource. Another resource is from Caring.com - Dental Care for Someone with Alzheimer's disease.
Good dental care can help prevent eating difficulties, digestive problems and extensive dental procedures down the road.
After I was hospitalized Mom spent her last 6 months in a private care facility. Mom had been diagnosed with thrush and she was having problem with her teeth. The pain in her teeth contributed to her not eating. When Mom was receiving hospice I talked to one of the nurses about the problems with her mouth. The nurse suggested talking to the doctor and asking about a compounded prescription for "Magic Mouthwash", (a compound that includes viscous lidocaine, nystatin, benadryl and sometimes corticosteroid). This compound seems to offer relief and may be worth discussing with your own doctor or dentist.
Having 20-20 hindsight I would encourage you to seek dental care early and try to find someone who can work with people exhibiting symptoms of dementia. Daily care is so critical.
The Alzheimer's Society fact sheet 448 Dental Care and dementia is a great resource. Another resource is from Caring.com - Dental Care for Someone with Alzheimer's disease.
Good dental care can help prevent eating difficulties, digestive problems and extensive dental procedures down the road.
Sunday, September 27, 2009
Communicating
I have been pondering the power of communication and isolation. A friend who works in a smaller district told me how isolated she feels; she even shared; "I hardly ever get emails so I never know what is going on elsewhere."
After hearing that I realized I get lots of email at my job and home. I even get email from our car. My husband and I recently bought a new Equinox, it is set up to run self checking diagnostics monthly and then to send me an email explaining the diagnostic results. I feel pretty connected and supported.
That wasn't always the case when I was my Mother's care giver. I often felt very isolated and alone wondering how to best care for my mother and how to maintain myself despite depression and at times feeling overwhelmed.
I was very fortunate to have a very supportive family and a supportive group of friends. I had access to caregivers and respite when I was at work and when I needed to attend workshops and training; as well as occasional nights out.
The resources available on line are abundant; the quality of information out in cyberspace is very good. I would encourage everyone to either investigate an on-line support group or a support group in the community where they live. Many care givers do not have internet access and many others are not computer savy. For these care givers having a community support group can be a real life saver.
Support group members are great sources for real life solutions to common problems. Just being able to talk to others who are experiencing the same problems you are can be very reassuring.
The individual experiencing Alzheimer's is also feeling isolated and frustrated with communicating. Naomi Feil in her book Validation Therapy, Jolene Brackey and her book Creating Moments of Joy as well as many others offer some very sound ways to communicate with your loved one.
When my Mom felt understood and felt included her behavior and moods were more positive. Virginia Bell and David Troxel in their best friends model for dementia care share that most of all people with dementia need a best friend. I think everyone needs a best friend.
After hearing that I realized I get lots of email at my job and home. I even get email from our car. My husband and I recently bought a new Equinox, it is set up to run self checking diagnostics monthly and then to send me an email explaining the diagnostic results. I feel pretty connected and supported.
That wasn't always the case when I was my Mother's care giver. I often felt very isolated and alone wondering how to best care for my mother and how to maintain myself despite depression and at times feeling overwhelmed.
I was very fortunate to have a very supportive family and a supportive group of friends. I had access to caregivers and respite when I was at work and when I needed to attend workshops and training; as well as occasional nights out.
The resources available on line are abundant; the quality of information out in cyberspace is very good. I would encourage everyone to either investigate an on-line support group or a support group in the community where they live. Many care givers do not have internet access and many others are not computer savy. For these care givers having a community support group can be a real life saver.
Support group members are great sources for real life solutions to common problems. Just being able to talk to others who are experiencing the same problems you are can be very reassuring.
The individual experiencing Alzheimer's is also feeling isolated and frustrated with communicating. Naomi Feil in her book Validation Therapy, Jolene Brackey and her book Creating Moments of Joy as well as many others offer some very sound ways to communicate with your loved one.
When my Mom felt understood and felt included her behavior and moods were more positive. Virginia Bell and David Troxel in their best friends model for dementia care share that most of all people with dementia need a best friend. I think everyone needs a best friend.
Thursday, September 10, 2009
Caregiving Journal
When I was taking care of my Mother, I developed a caregivers journal. I bought a 3 ring binder and a package of tabs. This book was designed to be grabbed in a medical emergency as well as a day to day record of mother's care. These were the sections I included.
1. Emergency Data - Phone Numbers - Drs, family, friends, caregivers, Programs, everybody I dealt with in regards to Moms well being. I also included a prepaid phone card in cases of emergency caregivers could reach my sister and other family members if I was not there.
2. Calendar with appointments and events.
3. Mom's Profile - Her story. What she liked to eat, stories she liked to hear, how to work with her, strategies to use. Things to be aware of mood shifts. What medication she was taking. Current photos - especially when she was wandering. Side effects to watch for. Music she liked to listen to. tips for safely getting her out of chairs, bathing her and later making sure she had snacks and lots of water to drink. Things she was still able to do and things she needed cue-ing with. I put enough current information, that if for some reason I was not there medical personnel and my sister Rita would have enough information to know what was going on.
4. Medical - Current medication, dosage prescribing physicians. Pill schedule. I included prescription and nutritional. Any reactions we had seen. I also included notarized medical permission forms for the people I had selected to be able to make decisions in an emergency. I made a copy of her medical insurance card.
5. Daily Record - This was kept by each caregiver including me: Mom's current moods, how well she ate, how much water she had drank, if she had been incontinent or constipated. Funny incidents, happy incidents, what they had done that day for activities. What was working what wasn't.
6. List of caregivers- names, numbers, times they preferred to work.
7. A copy of mother's living will. My attorney's name and the fact that my sister would have guardianship if something happened to me. (The original documents were kept with the attorney and were part of my will.) I wish I had put the location of the Power of Attorney I had in this journal. When I was hospitalized no one knew where it was. I had to tell Rita, my sister where it was. It was very fortunate that I was able to talk and eventually remembered where it might be. She needed the Power of Attorney because I was given narcotics during my hospitalization and legally could not make decisions.
I put this together so it was portable and had information that would assist others to make decisions in an emergency if I was unable to do so. It also helped keep everyone who was caring for mother in the loop. What happened before they got there. It helped me to know about mother's day when I came home from work.
1. Emergency Data - Phone Numbers - Drs, family, friends, caregivers, Programs, everybody I dealt with in regards to Moms well being. I also included a prepaid phone card in cases of emergency caregivers could reach my sister and other family members if I was not there.
2. Calendar with appointments and events.
3. Mom's Profile - Her story. What she liked to eat, stories she liked to hear, how to work with her, strategies to use. Things to be aware of mood shifts. What medication she was taking. Current photos - especially when she was wandering. Side effects to watch for. Music she liked to listen to. tips for safely getting her out of chairs, bathing her and later making sure she had snacks and lots of water to drink. Things she was still able to do and things she needed cue-ing with. I put enough current information, that if for some reason I was not there medical personnel and my sister Rita would have enough information to know what was going on.
4. Medical - Current medication, dosage prescribing physicians. Pill schedule. I included prescription and nutritional. Any reactions we had seen. I also included notarized medical permission forms for the people I had selected to be able to make decisions in an emergency. I made a copy of her medical insurance card.
5. Daily Record - This was kept by each caregiver including me: Mom's current moods, how well she ate, how much water she had drank, if she had been incontinent or constipated. Funny incidents, happy incidents, what they had done that day for activities. What was working what wasn't.
6. List of caregivers- names, numbers, times they preferred to work.
7. A copy of mother's living will. My attorney's name and the fact that my sister would have guardianship if something happened to me. (The original documents were kept with the attorney and were part of my will.) I wish I had put the location of the Power of Attorney I had in this journal. When I was hospitalized no one knew where it was. I had to tell Rita, my sister where it was. It was very fortunate that I was able to talk and eventually remembered where it might be. She needed the Power of Attorney because I was given narcotics during my hospitalization and legally could not make decisions.
I put this together so it was portable and had information that would assist others to make decisions in an emergency if I was unable to do so. It also helped keep everyone who was caring for mother in the loop. What happened before they got there. It helped me to know about mother's day when I came home from work.
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