This weekend's Blog is about the subject of the lecture I attended on Friday by Dr. Teena Cahill. She contends, and I have highlighted some of our readers who seem to prove her theory, that we can take this horrible AD caregiving experience and turn it into a positive life experience.
I invite you to read the Blog and post your comments and opinions here.
Joan-read your blog first thing this morning-the way I usually start my day. The most positive result of caring for a person with dementia has indeed given me insight into my own being. At first I was disturbed when people told me how strong I must be. My stock answer was that I didn't ask for any of this-it was given to me. You must play the hand you are dealt. Now I realize strengths in me that I never thought about. I have learned to be independent in all areas of living. My DH preferred to make all decisions and I was content to let him. Of course I would prefer out former together life but it is not to be. I take pride in me for learning and trying new things every day.
One positive thing I hope for is to teach the primary care physicians in our area about this disease. When I was in practice I took care of a few patients with Alzheimer's, seeing them for 15 minutes every 2-3 months. I had no idea what the caregivers were going through. Next month I will be giving a talk to Medical Grand Rounds at our local Medical Center on the topic "Alzheimer's Disease from the caregivers point of view". I plan to use a lot of the comments from this website, both with regard to the effect on the relationship and caregiver, as well as mention a recurring theme - that the doctors failed to make the diagnosis because they did not pay attention to what the caregiver was saying. If any of you have any specific comments you would like me to use, please add them to this discussion. Obviously, all comments will be entirely annonymous. I hope this will awaken the PCP's to more aspects of this horrible disease.
Thank you for sharing your lecture experience. I am sure I was one of the ones that said that there isn't anything positive about this AD process. But.....for me it is becoming big part of my spiritual growth. I am learning a little humility and gaining a deeper insight into what others have to go through. I worked as a Pediatric Social Worker with terminally ill children before I retired. I thought I knew what being understanding and compassionate was about. I hope God "fixed" whatever dumb mistakes I made in my "paid" career. I really think He led me through my education and work experience for this REAL job. Hopefully it is making me a better person. I have learned to live in the moment more - with that third eye looking out for pitfalls - and enjoying the smallest of joys that I missed before.
Oh, Joan, Joan, Joan, don't forget yourself for making AD a positive life experience. What you are doing with this web site is well beyond positive. Whatever your reasons were for starting it, in doing so, you have touched a world full of good, decent, desperate people who need each other just to get thru the day.
As for me, yes, I did write my books and column, I'm proud of that. "When the Doctor Says, Alzheimer's" was written because I needed to find quick, simple, non-medical answers to all the *&^%$ I was going thru. Googling AD was just overwhelming--TMI too soon. I'd expand it even further today w/all that I've learned.
And I agree w/Marsh. Fortunately our family doc knew more about dementia than the average bear, but so many did not and I tried to tell them, gave them CG websites to help understand what was going on in the home, spoke at UCLA, etc. I don't think it took. They are too attached to the medical aspects of AD and give little thought to CG. That's not their forte, their responsibility. And they DO NOT listen. One doc prescribed an aphrodisiac for my DH! What did he think I was talking about! Just what the world needs--another dirty old man! He wasn't listening, just had me pegged into a cubby hole.
Nonetheless, I always knew I was strong, even as a child and AD has made me stronger and less inclined to tolerate people who annoy me for whatever social or family reasons--and that is very liberating. I march to my own drum and anyone who doesn't like the music doesn't have to listen.
Reading this over, I guess it made me a little testy, too. Or maybe it's because I'm well into the Third Age.
A little while ago, a geriatric social worker was planning on giving a talk to young doctors about how to talk with families about AD. She asked for input over on the Alz Assoc website. Some of the answers were pretty good.
http://alzheimers.infopop.cc/eve/forums
Click on Caregivers Forum
Look for the thread "what to tell doctors". It's fairly near the top -- it was just posted to today.
One thing - the doctors know there is not yet a cure. They stay on top of the latest medications and what they will do; and if a medication goes wrong, or if the health deteriorates physically that needs treating, they will prescribe medication for that illness. There really isn't much they can do for our spouses (spice) but my own doctor is looking out for ME. She sees me twice a year, and wants me to call if I need anything. I'm telling her what I'm going through and what it's like, and hopefully she can use that to help other caregivers.
My husband's doctor (his neurologist) has me e-mail any changes, anything that he is doing that shows more decline, and sometimes she'll have me bring him in, and sometimes she will ask me if I WANT to bring him in. She's told me to call her at any time that I need her.
They are both extremely sympathetic and I like them. However, that said, I sure do wish someone could come up with a cure tomorrow!
As far as a positive life experience, the ones Joan has mentioned and Joan herself are great examples of creating help for others. Maybe someday, I'll write a book. I'm probably going to write more about the humor we try to find each day while living in this #@*& situation!
After having to place my DH in a NH last May, I did not really think I could find any way I could turn this situation into something more positive. I felt, guilt, hurt, loneliness, etc. But, about 5 months ago, I was asked to speak before 70 or so Health Care Professionals about Alzheimers and the effects it has both on the patient and the Care Giver. I titled my talk "Walk with me through Alzheimers". I do not like speaking in front of an audience, but, when I stepped on that Stage, it was like any fear I had went away and I was determined to make sure everyone in that audience understood what our loved ones go through and also what we as 24/7 Care Givers endure. The talk went very well and I have spoken to several groups since then. We have also started a "Family Council" for the NH and I was elected President of this Council. The purpose is to get Family Members more involved in the care of their loved ones and to let them know that they are still their loved ones Care Givers, but, just in a different way now. This Council will be a way for them to be able to address any issues they might have and talk with other family members. I want everyone to understand that they are not alone. "We are all in this boat together". Our first Family Council Meeting, we only had about 25 family members, but, the one this month we had 58 members, so, we were all very happy about that. We also have a lot of fun events planned so we can all enjoy them with our loved ones. Last week I was invited to speak with some family members in another NH in our area and help them get their "Family Council" up and running.
Involvement has been what has helped me as I go through this journey of AD with my wonderful husband.
Kay Kay: This is a magnificent thing that you are doing at the facilities--and very much needed. I've had this idea since the beginning that I would never let my husband's travail be in vain, something valuable had to come of it, he deserved that. So I write my little column, have my web site: http://geocities.com/caregiving for alz, and occasionally someone buys a book. We caregivers garner so much experience, knowledge, understanding and compassion that it's almost a crime to let it just slip away. I would have enjoyed something like you are doing when I had my sweet love in a facility. Good for you. Good for all of us.
So far, I find nothing positive about AD. Yes Joan's blog is wonderful and supportive. Some freinds and acquaintainces are understanding. However, how much better it would be if AD didn't exist. Today I just feel that AD destroys the lives of the victim, their family and everyone who is close to them. Our AD is picking up pace again and presenting new and different challenges along with the old ones.