RESOURCES:
Here are some of my favorite resources for caring for a loved one with Alzheimer's Disease.
- My Journey Into Alzheimer's Disease by Robert Davis - Just like my Gary, Robert Davis was diagnosed with 'early-onset' Alzheimer's in his 50's. He was enjoying a wonderful life as a pastor in Miami, Florida for 14 years, when he began the confusion began. Married 30 years with 2 daughters, and busy with his ministry, his life was abruptly changed as he had to step away from his beloved preaching, counseling and shepherding. His writing takes place during the early stages of the disease, and possibly into the start of the middle stage. Some of the chapters were written by Robert, some by his wife, Betty, and some were edited by her. (Especially when he had lost the ability to write, and, though able to record his story, he repeated himself frequently and often had a hard time gathering his thoughts.) At least half of the book is devoted to his personal history and spiritual journey. He shares from his heart the deep struggles with the confusion and blank mind which would come and go, and how his relationship with God was able to continue. Knowing what his walk with God had been like up to this point is important in order to understand how God takes a person where he is at, and continues working in their heart. In the later chapters he tells what it's like for the person who's mind is confused and how to help them function at their highest ability. He even relates what he would have done differently in comforting those with dementia in his congregation. Spiritual perspective, in the life of a Christian Alz. patient. Click this link: My Second Favorite Book for my more detailed review and how it impacted me.
- Caregiving: A Cause for Christ by Ken Tada - If you are a Caregiver, or know someone who is, please don't miss this article from Ken Tada. He has been married to Joni, a talented, who is a quadriplegic for 30 years, and his take on commitment, and serving a dependent spouse is fantastic. This article is straightforward, humble, personal, and encouraging, You will be blessed, and challenged.
Click this link for the article: Caregiving: A Cause for Christ
Click this link for "Joni & Friends" ministry:http://www.joniandfriends.org/
- A Promise Kept by Robertson McQuilkin - This book set the tone early for me. The true account of a man who left his career, to care for his wife. His love for her is a beautiful picture of Christ's love for his church. Roberston saw it as a privilege to love his wife in sickness as well as in health.
- Learning to Speak Alzheimer's by Koenig Coste - Of all the books and resources I have read this is my favorite for practical help. The author's husband also had early onset A.D. just like Gary. Communicating in a way that the loved one understands is invaluable and in many cases prevents problems. For example: emotions last for the A.D. patient even though the event which caused them is long past. The memory seems to be fine when it comes to the emotions. The healthy brain can reason its way out of a bad mood, or sadness or anger, etc., but short term memory loss makes it hard to remember what caused the emotion. Keeping things pleasant as much as possible really helps them enjoy life, even though they can't remember things. Though there are a couple of things I disagree with, here is a great deal to glean from this wonderful resource.
- Blame it on the Brain by Dr. Ed Welch - This was useful several years ago especially when we didn't know the cause of Gary's dementia, from the Christian perspective and covers many different brain conditions and does not discount the fact that even people with brain problems are sinners and need accountability.
- 36 Hour Day by Mace and Rabins - This is the basic book, which covers everything from legal issues to physiological changes. Gary's neurologist gave this to us when he was diagnosed a few years ago. Very helpful, if a little intimidating. I try not to "read ahead" to far into the details of what's coming. Only enough to be somewhat prepared.
- Memory Books and other Graphic Cuing Systems by Bourgeois - A new find. I have put together a couple of "memory books" described by the author, and they have been wonderful for Gary. They are very easy to do, and provide lots of interesting time for him. They are most useful for the health care workers at the programs he attends, or anyone who doesn't know him well, or who DOES know him because they provide conversation points that he can relate to. i.e. photos of his childhood home, and our current home with the simple phrases describing them. "This is my home." or "These are my parents." or "I love orchids." Underneath a photo of him with some of his orchids.
Thanks for sharing these resources. Very helpful and good to know some different books that are out there to help in this area. Although I don't have any specific need at this particular time in my life, it is good to know because you never know what will lie ahead. Both of my mom's parents had AD (although I was too young to fully understand). Do you think these books would be helpful for someone who has just been diagnosed with dementia (and not A.D.). Are they similar??
ReplyDeleteSandi,
ReplyDeleteMy understanding is that Dementia is Dementia, and is a symptom of various different things, i.e. Brain injury, Sleep deprivation, certain drugs, etc. Therefore, I think they would be generally useful for anyone with a dementia diagnosis. For some conditions, I think there might be more useful books than these, because there is possibility of recovering the brain. For instance, with a brain injury, there may be dementia but additional therapies could help them to, like Occupational and Speech, etc. Everyone is so different, as are the conditions that effect the brain. What works well for one may not for another.