Harriet and I have been on this adventure/journey for about two years. When I have something difficult to face, I will read, study, listen, and watch everything and anything that will equip and educate me for what I am facing. To be honest, what we are facing scares me deeply. When I think of the future, I see a lot of struggle, pain, sadness, and grief. Well, truth is, I’ve got an active imagination that often comes to horrific, terrible conclusions. So, I need to follow the teaching of our Lord Jesus who said, ”Do not be anxious about tomorrow…which of you by being anxious can add a single hour to his span of life…Therefore, do not be anxious…for your heavenly Father knows everything you need…but seek first the kingdom of God, and his righteousness, and everything you need will be added to you.” Jesus’ teaching can be summed up in the saying, Live One Day at a Time.
Jesus’ teaching does not mean that we shouldn’t prepare ourselves for the future. The more we learn and know the better we will be prepared for whatever comes our way. Aren’t you glad that first responders are well trained? Because of this they are ready for flood, fire, storms, war, and pretty much any other disaster that might happen. In the same way Caregivers need to get information, education and training, to better face whatever comes our way.
When Harriet was diagnosed with Alzheimer’s I thought that I understood a lot about dementia. As a Lutheran pastor I had been involved in ministry to people with dementia in nursing homes, Hospice, and Respite care. I had made visits to families struggling to care for a loved one with dementia. Yet despite all this, I didn’t have any idea about how many different types of dementia existed or that each type had subgroups. I really didn’t understand the different stages of the disease. I had so much to learn, and even after all I’ve learned there is still so much that I don’t know.
The first place I went, to look for information, was the Library. At this point I’ve probably read over 20 books and would like to share, what I think, are the best of the best:
- Mayo Clinic on Alzheimer’s Disease. Ronald C. Petersen, Ph.D., M, D. Editor, c. 2013 This is like a text book and covers every type of dementia. Yet, it is written at a level everyone can understand. A great reference book that you will return to again and again.
- An Unintended Journey, a Caregivers guide to DEMENTIA, by Janet Yagoda Shagam, c.2013 This book covers everything from diagnosis, to legal issues, to end of life considerations. Another good reference book to keep in your library.
There is so much information on the web and that made it a natural place to turn next. Every type of dementia has their own website. Here are some sites that I keep returning to again and again:
- Association of Frontotemporal Degeneration
- Frontotemporal Dementia Advocacy Resource Network (FTD ARN)
- Alzheimer’s Association
- Mayo Clinic
There are few things that make people angrier, frustrated, and discouraged than spending time on Face Book. However, we keep going back because of the good things we find there. One of the good things I have found are support groups for those struggling with dementia. These groups helped me see that we are not alone in all the different things we’ve gone through. They have also made me more aware of what may be awaiting us in the future, and my need for more education/training to prepare for whatever we do face. Some of the sites are closed which means that you must get permission to join. Here are some of the sites that have been a real blessing to me:
- The FTD Spouse
- The Association for FTD
- Ask the FTD Patient?
- Alzheimer’s Support Group
- Early Onset Alzheimer’s Support Group
Finally, there is hardly a day that goes by that I don’t watch a video on You Tube or another source. There are some great training programs that can help with pretty much anything you may face. Just go on YouTube and click on the magnifying glass then type in what you’re looking for. Here is a list of the best presenters I have found:
- Careblazers: dementia care heroes
- Teepa Snow
- UCLA Health
- Pines of Sarasota: Education and Training Institute
My studies, in dementia, do not in anyway make me any kind of a medical expert. It’s just one way I deal with problems, troubles, and struggles that I face. I have no doubt that I have only scratched the surface about this disease. If you think that you, or a loved one, might be struggling with dementia, get medical help. There is not enough information in books, websites, Face Book, or You Tube to safely self-diagnose this condition.
A Caregiver's Journal 