This book is such an important one that I wasn’t content to just read it. I wanted to delve into the background of the author who wrote it, and I am blessed to have Victoria Adams on my blog today. A book like this one takes immense courage to write–the author has had the experiences she writes about, and it’s not always easy to put those feelings and lessons into words.
Hi Victoria–I am so glad you stopped by. I’m sure we’re all eager to begin, so here is your first question:
What influenced you to write your book?
It was a process. Somewhere I’ve written that it began as a therapeutic journal. It was a way for me to walk through the day and figure out what worked, and what had been a complete disaster. It grew. Some people read some of the things and asked me to write more. And I did.
And I’m glad you did. I don’t think there is anyone alive today who has not been touched by dementia in some way, be it a relative or a friend.
What would you say is the most important message of your book?
I think I wanted to share what I had learned so that other people could discover what I did; it doesn’t have to be an insurmountable burden to care for someone. And if it becomes one, you can make the decision to seek help without drowning in a sea of guilt.
That’s important–asking for help is not a sign of weakness, it’s knowing what your strengths are.
Do you have any other books in progress, or that you plan to write?
I plan to come out with a second edition of Who I Am Yesterday sometime this summer. It will be an expanded version with some of the material on my blog, some photos, and a written version of the talk I have started giving. The hope is it will be a hardcover but the publisher and I are still discussing that.
I also have a work in progress entitled “Why Me? Come let us Reason with Job.” Initial reviews on the manuscript as completed to date are very encouraging. The subject matter and my goal with the book require a substantial amount of research. I know what I want to say, but I want to give the reader a foundation for that point of view.
As I imagine it, that is going to be a very time-consuming project. I love the cover–very compelling. Best of luck with the work.
How much awareness does your husband have of your author journey?
None. Which is particularly sad for me because he always wanted me to write. We used to spend hours talking about physics, history, philosophy, religion and a whole host of other things. He pressed me for years to get my thoughts on paper. He is my inspiration and I do this, in part, for him.
Bittersweet. However, he is still with you. And I know that makes a difference.
What would you say is the one thing that has made this changing relationship with your husband easier?
A willingness to understand things from his point of view. Understanding what can and cannot be changed and being ready to work through my own needs in such a way that I leave room to address his.
That is probably one of the biggest challenges right there. People can take a lot of tension away from those relationships if they just remember to be willing to adapt.
Caregivers: live-in or visit—which has been easier and why?
I haven’t had a live-in caregiver so I really can’t compare. I brought a care-giver into our home primarily because I was concerned that my husband would become so focused on me (whoever I happen to be “today”) that he would not respond to anyone else. That could pose severe problems if something happened to me. I felt it was necessary to “bring the outside world in.” I have no way of knowing how the disease will progress with him or how long his rather good general health will last. My plan at this point is that when it becomes necessary I will bring someone in full-time. Not only do I prefer to have him with me, it is probably the more economic choice given our circumstances.
What was the worst experience you had with outside services, and how did you deal with it?
Wow, that’s a hard question! I’m such a warrior when it comes to his care that situations don’t get too far along an uncomfortable path before I’m packed and out the door. I think the hardest things to deal with have related to the medical field. I describe in my book what sort of nonsense I had to go through to get the phone number changed on his records at the primary care facility. I think I occasionally get a bit weary when I have to deal with medical people who are not familiar with dementia and have no clue of how to respond to the patient. I have probably avoided many of the pitfalls because I take the time to figure out what someone can offer and if it is not what I need or want I go look for something else rather than try to make someone fit in my scheme of things. I address this in the book as well. I think you need to make sure you are not jumping to a decision out of desperation but are taking time to make an effective choice.
I hope there are career paths out there that specifically deal with dementia patients. It takes a real knowledge and love to relate to them in their world.
Is there any advice you would give for those who have dementia-affected spouses living in an offsite hospice situation?
Time. I don’t think it really matters if your spouse, or parent, still recognizes you or not. My husband hasn’t been clear about who I am for over two years; but when I leave for any period of time (I do not leave him alone any more) he gets worried about whether or not I am coming back. He often needs reassurances that I will be here “tomorrow.” There is something about the human connection that grants a dignity to human life that cannot be provided by a nursing staff. He or she may not know you, but I sincerely believe they know when they are cared for. Choose the facility well, develop a relationship with the staff, become a real part of the care.
That is imperative. Your loved one is still part of your heart, and somewhere in his or her mind, you are still a part of theirs. Even if it doesn’t seem like it.
Thanks for being a part of my blog world today, Victoria. Before we part ways, is there anything you might want to add, something I may have missed?
I have recently started giving talks on the subject of dementia. My approach in the talk is to use examples of my own experience along with some pretty easy thought experiments to give my listeners some idea of what it might mean to live with dementia – to be the person whose whole world is evaporating. So far the reception has been very good, especially from professionals in the field.
Although there are many other subjects discussed on my blog, I will occasionally add a thought or two about the experiences I have with my husband. Some days are better than others, but together we work it all out. At least for now.
My blog is Victoria’s Reading Alcove at : http://victoriasreadingalcove.wordpress.com/
I have a Facebook page of the same name: https://www.facebook.com/readingalcove
Thanks for stopping by, readers! Feel free to comment or ask questions. We’ll see them!