Coping with the Alternate Realities of Dementia Patients

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

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

Thanks, Carol. It really does help to understand how different all of our realities are. That makes it easier to accept the reality of someone with dementia. Oh, and ice cream really does help : )

Carol

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

As are YOU!

Leah

Thank you, Kristi. I didn't always know if I was doing the right thing, but instinct told me it was what I had to do. It's nice to feel validated.

Carol

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

Your mother-in-law's depression is a legitimate concern. All the best in to you. You are trying hard to make this work.  Please check into these sites. I can give you others, as well. At least knowing you are not alone can be some comfort.

Carol

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