What do we all really need to do to make the best of this difficult situation?

Posted by RichardTaylor at 1st September, 2009

From the August Newsletter

Hello!

First: what we don’t need - We don’t need to find another web site, to complete another checklist, to join another group, to pay just one more co-pay to a professional with a different set of initials after their name than has the “gang of five” (or however many professionals you now consult), nor do we need to attend another conference. And for sure, we don’t need more and more pills.

We need each other. We need a support network. We need a village of enablers. We need to use the love we already have for each other and the common sense we already have to discover for ourselves how better to get along by ourselves and with each other when the symptoms of dementia become apparent in a family member.

We need the results of sound psycho-social research on the best ways to interact with each other. What are the “best practices” for dealing with the issues of money, driving, intimacy? We know more about a single protein in our brain that may or may not have something to do with dementia, than we do about how to conduct a successful family meeting to discuss the impact dementia is having on the family.

We need to listen to each other. We need to take the time to empathetically appreciate each other’s situations. We need a plan. We need a commitment to gathering together every so often to talk about how the plan is going, how we are doing, what we should do more of, what we should do less of, what scares us, what makes us feel good.

This is what I think we do and don’t need, what we should and should not do. And this all should happen now, before we come to or cross more bridges. Not to decide, is to decide. Not to decide is to lose even more control of what is happening to each of us and, to all of us.

Stand up, Speak up, Listen, Act.

Richard

Category : Blogs / news

Comments

Jo Holt September 3, 2009

Dear Richard,

I met you in Louisville, Ky, 2 years ago when my mother was in late stages of alzheimers dimentia. You touched my heart with your courage and strength.
My mother passed away on June 7th, this year, and we will be burying her cremains on Monday, Sept 7th which is Labor Day. As I have been trying to come to terms with laying my loved ones to rest (we are also burying my brother’s cremains who died in March 2008), I don’t know whether to mourn my mother who I lost before Alzheimers or my mother I lost who had alzheimers.
My mother before alzheimers was a strong, but tender matriarch. She had a passion for life, a competitive spirit, and needed all of us to understand that she was in charge.
When my mother was diagnosed with alzheimers, she lost that need to be in control. She became Jo Ann and not Mom or Grandma and the beauty of the essence of JoAnn could really shine through. JoAnn loved to talk about her new best friends and all the beautiful trees and plants that she or her ‘dad’ had planted. I was her friend now instead of someone she felt obligated to take care of.
So when I attend the graveside ceremony, I feel the need to say my final good-byes to my Mom and my final good-byes to JoAnn.
I thank God for giving me time with JoAnn and I pray for all caregivers to realize that their time with their loved ones is a time to find a new relationship and to realize that the loved one is the victim and the caregiver should relish that time.
Richard, I wish you beautiful, happy, peaceful days.
Mary Jo Holt (Jo Ann’s daughter)

Mary Gallagher September 24, 2009

I heard you speak in Glasgow this week and was both moved and inspired - such sound good sense and perception. Your words will influence my practice and enhance my understanding. Thanks

Sue Tucker September 27, 2009

Hi, you put into words what I have been thinking now for some time, it is all about love and common sense. I will be recommending your web page and book. Is ‘Be with me today,’ another book and is it out yet? I was very moved by your talk at the Alzheimer’s Conference at Warwick, it helped me and no doubt many others in confirming my beliefs and inspiring me.
Thankyou to you and your wife.
love Sue