I just found "Creating Moments of JOY" by Jolene Brackey. Actually the director of one of the facilities we visited gave it to me. Each employee gets one and that book is their philosophy. AMAZING! I know we all are terribly busy, but this is a MUST read, and it's organized so you can read it in 'small bits.'
I just featured the book on the home page - www.thealzheimerspouse.com- with an Amazon link for anyone who wishes to purchase it. I am going to order it myself. Sounds good.
I just received mine in the mail. I've started reading it and I can tell, it will be great! In the first couple of chapters, I already have ideas that I can put into place now that will make live better for my DH and me!
Just from hearing what has been said on this link is enough for me to get the book. I am up for anything that helps me to deal with this. Joan, what information is there for the caregiver (me) that is not dealing with this very well. It seems that my husband who actually has the disease is handling it better than I am. Is this strange or is it just me? Please let me know. Thanks....
Li bby, thank you so very much. I'm sitting here listening to a tantruming 9 yr old, totally out of control a husband who can't take it and thanking God that my Mom is away for the weekend visiting the useless side of the family. I logged on, hoping for some support and there is was your post on the book. I am broke beyond belief, but I WILL FIND THE MONEY FOR THIS BOOK. Thank you for offering some hope of joy to this worn out ,wife, mother, grandmother, & daughter.
mj--This is not strange at all. My husband is usually quite well adjusted and is not aware of how bad his memory and confusion are. This is very typical of the person with AD. I learned on this site that this is called anosognosia. There is a link you can go to that will explain it very well, though I don't know what that link is--perhaps someone else can help us out w/ that information? The folks on this site are excellent non-judgemental listeners. You are not alone with your feelings--none of us are experts at how to handle this disease--we all just do the best we can, and give each other a lot of support.
You and I are alike - I haven't dealt with this well either. It has taken 3 years of support groups, social worker counseling, research, blog writing, conference attending, edcuation, and support from all of you to get me to where I am today - which although many people don't think I'm doing so great, I am a loooooong way ahead of where I was. The struggle is chronicled in all of my blogs. From sobbing, stress, screaming, and arguing - to finally accepting that my husband is not coming back, and I have to deal with who the disease has left in his place. I can't argue with him; can't raise my voice; can't react to his rantings; can't react to his crying and manipulating. I had to build a wall around my emotions and deal with each episode one episode at a time; one day at a time.
I do believe that every person has to come to that point on their own in their own time frame.
Honestly, out of all the books and all the advice, the one resource that helped me the most was "Understanding the Dementia Experience" by Jennifer Ghant-Fuller. It is on the left side of my home page - www.thealzheimerspouse.com It helped me understand the disease in such a way that I was better able to cope with what came along.
Many members tell me that reading my blogs that sound like their own experiences have helped them. Click on the previous blog section on the left side of the home page, and scroll through the topics. Read the ones that sound most relevant to your situation.
Jolene Brackey was the featured speaker at the caregivers' conference I attended last year. She's an excellent, fun speaker. Bought her book and recommended it on this site. It IS a great book. Next caregivers' conference for me is this August--Frankfort, IN. HB went w/me last year, but says he doesn't want to go this year; so I'll have to make arrangements for family to check on him from time to time. OF course by August, he may change his mind.
joang, I loved the "Understanding the Dementia Experience" so much that I have ran it off to share with my sons. I take it out and read it often. Thanks for mentioning it tho. It is so good and on point. I get more help from this site than I do from the Alzheimer Association. The AA means well but it is only as good as the people there. Most mean well and some are just talk. I am sure ya'll can relate to this. Anyway, please keep putting the usefull information and care and support you have on this site..... You and your diligence are a blessing to all of us....... God Bless and Keep you in your job as caregiver......to your loved one and to all of us on this site......
If anyone is in the Chicago area, I want to let you know that Jolene Brackey is speaking at a 2 hour conference on November 16. It is being sponsored by Sunrise Senior Living, Lexington Healthcare and the Greater Illinois Chapter of the Alzheimer's Association.
"COPING WITH LOVED ONES WITH DEMENTIA"
Tuesday, November 16, 2010 10:30 am - 12:30 pm OR 6:30 pm - 8:30 pm
Hyatt Regency O'Hare 9300 Bryn Mawr Avenue Rosemont, IL 60018
Refreshments will be served.
RSVP to 800-797-4785 to reserve a space at one of the two presentations. Seating is limited. Event is free.
I'm attending with another spouse from my support group.
Deb, I wish I could come. DH and I are speaking as part of a panel on early memory loss at a conference in Springfield on November 15th. We will still be at that conference on the 16th.