Written by
I so related to this post of you and your dad!
When 9/11 happened, my mom had seen it on TV (which I tried my best not to let her watch the news--just too depressing and confusing for all of us, really) and my mom thought she was back in WWII. I couldn't bear to tell her that something else BAD had happened.
I comforted her, hugged her, told her we'd be allright, and turned on Andy Griffeth. We sat down and ate an ice cream bar (she loved her bars as she called them) and both of us were better for going to that "other place."
For weeks mother talked about WWII, and of my dad in the army--and I encouraged her to write him letters, something she had done so much of (the first time). I still have their letters.
Reality is a tricky thing. Our perceptions of our own reality are not always accurate and colored by our own emotional state.
I agree--trying to force my reality over hers is not only futile, but unnecessary. The longer I cared for my mom, the less "reality" seemed to matter. Just love. (and ice cream bars--lots of ice cream bars)
~Carol O'Dell
author of MOTHERING MOTHER
Thanks Carol.
Often, love trumps professional judgment. Neither of us had time to wait for studies to prove what we knew was best for our parents. I'm happy to see the validation in these studies, mainly because caregivers will have documented proof that their instincts are sound. In most cases, we must go to the reality of the dementia patient.
I was asked the other day whether this extends to driving issues. Of course not.
My dad was always wanting to buy a car, and we just had to wait out those times - often days - when he was focused on this issue. It was hard. We had to tell him he could no longer drive. When he said that his eyes were better, we said yes, but still not good enough to drive. It was frustrating, and he'd get mad, but we did what we had to do. Eventually, we'd succeed in getting him to focused on something else.
Most things, however, are not about safety. They are about validating them as human beings. Joining them in their reality does that.
Thanks so much for your note.
Carol
As a person in the early stage of dementia I am frightened by advice that encourages caregivers to "validate" the hallicunations of people with dementia. Surely there is some obligation to help me stay in the here and now for those who are anchored in the here and now. Especially on the part of staff and professionals. Family members do me no favors when they completely abandon their knowledge of today in favor of "playing" with me.
I too live in the here and now, a here and now I don't quite understand or appreciate in the way others do, but one which serves me in many ways. Please at least offer me reality before you jump into my disease with me. You don't have to argue with me about who is and is not right. We can agree to disagree, but shouldn't you at least try to help be be all I am able to be for as long as I am able to be it. Don't you risk hastening the moment I lose complete touch with reality when you validate the parts of me which aren't real, but are real to me? What about my moments of lucidity? What happens to them? How do I figure them out when you are promoting another world.
Don't be so quick with your validation. Please
Hi Richard,
I read your wonderful book "Inside Out," and recommend it to everyone who reads my blogs and my column.
I understand what you are saying (or try to the best that I can, since, as you know, I can't truly understand). I believe that the validation theory is valid when the person is in such a late stage that they can no longer join the world as most people experience it, no matter what the caregiver does.
My dad's dementia wasn't from Alzheimer's - it was failed surgery. He had lucid moments and they were very obvious. We had close talks for as long as these moments lasted and those moments are still precious to me. However, with him, and with many advanced Alzheimer's patients, as well, it was truly impossible to ground him in a reality that was not his. As a matter of fact, during some lucid moments, he thanked me for expanding his ever shrinking "universe" by joining him in his imaginative world.
If we tried to drag him back, it made him feel we were against him; we were lying to him and it made him paranoid about everyone around him.
You have chronicled your disease to help everyone understand. "Inside Out," and your continuing efforts to help people understand what this dementia is like, are your lasting legacy to this world. I am honored that you took time to write, and I will write a clarifying Sharepost, in the future, to broadcast your feelings to a larger group.
Everyone is different, the disease is always changing, and all "approaches" are done on the fly. We, as caregivers, are flawed. We want to give you the best kind of life you can live. I'm sure you have told your family your wishes and they will comply as long as you can benefit from it.
Thank you again for your courage and grace,
Carol
Leah, I can't tell you how much your response means to me. I thought of you the whole time I was writing that, wondering what you thought of what I did.
Truly, my dad's dementia was surgically caused and overnight. There was no "learning curve." But, yes, I believe there is a time where it becomes cruel to keep telling people "no - your are wrong, I am right" - if their brain can no longer figure out our reality. Each person is different, but you made me feel great. All I could do was what felt right. Once again, Leah, you are such an inspiraton
I don't know what you have available for help where you are, but you may have to looking into a nursing facility of some kind. If he is violent, his wife and others could get hurt. I write for this site, as well as my others at www.mindingourelders.com and my other blog at www.mindingoureldersblogs.com. Both have links to caregiver chat groups that are monitored. Also, www.ouralzheimers.com has a forum for questions. My sites have a lot of information, but you will also find comfort in knowing you are not alone.
Take care,
Carol
what she percieves as things done to her home by your husband? My mother is accusing him of changing out things like doors, faucets, coffee pots and such when she is out. They have been getting into screaming arguments with my mother calling him a liar and he calling her crazy. Since she is still very independent (drives, shops, cleans, cooks and manages finances), I can't take control over her. She will not admit that anything is wrong with her and will not go to the doctor about it. She also thinks that people come around our property at night to clip plants, steal dirt and remove small amounts of gravel. She wants to call the police and we argue about that as well. I tell her it is our property and she need not concern herself, but she insists that "they" are doing it to annoy her. I'm between a rock and a hard place and am an only child. My husband insists on confronting her and I'm at my wits end trying to keep the peace between them.
This is a whole different thing. She sounds paranoid, but you can't "agree in kindness" about stealing and such. Unfortunately, this is common, too. Screaming matches don't work either as she believes she is right. A third party maybe can help get her to a doctor. There are medications that may help her. But your husband should as detached from her as possible. It's sad, but it happens. And you will need to try to be as detached as possible. It's horrible to be in the middle. I hope you can find some way to get her some help.
Carol
Featuring Content From:
By using this service, you accept our Terms of Use. Please read them. The consumer health information on is for informational purposes only and is not a substitute for medical advice or treatment for any medical conditions. You should promptly seek professional medical care if you have any concern about your health, and you should always consult your physician before starting a fitness regimen. Copyright © 2012 Remedy Health Media, LLC. All Rights Reserved.
Those episodes are very hard to deal with. I used to try what is now called "distraction and redirection," with Dad. In other words, I would do my best to get him to shift his focus, by showing him something interesting, but unrelated to what he was upset about. However, there were many times when he was totally fixated on his paranoid thoughts, and, truly, there wasn't anything anyone could do but ride it out. It's very, very hard.
That said, I know that just being with him was of some comfort to him (but exhausing to me).
Acceptance in the key, when you can't get bring about change. "It's like this now, but it will change. I've got to ride this one out." If you meditate or pray, you may get some comfort in silently asking for strength. Either way, some deep breaths can help you stay focused and calm. Because, if the caregiver gets upset, well - you know, I'm sure. The dementia sufferer will get even more upset and then it's all out of control.
Keep reading and writing. We love hearing from you. Carol
Carol, I'm so grateful for your response and all the shared experiences and advice. It helps to know I'm not alone because it sure feels like that sometimes.
I am so happy to find this on the computer. I am going thru some rough times now with my mom who has demetia. When I take her to the doctor they don't tell you how to deal with these things. I need advise so bad and where do you turn if not to a doctor. They just give the medicine and your on your own it seems. It's hard on the care giver but thank you for your info. Anything will help. Thanks...Hopeful