When Families Don't Understand

No one wants their loved one to have dementia, let alone LBD. And it is still not uncommon for our family members to be unaware of its symptoms. Or, when told, to be sure they don’t pertain to THEIR loved one. The holiday season is often when distant relatives come to visit. This can be joyous—or sadly, not. Especially when the relatives doubt your word that Mom or Dad has a degenerative disorder. Betty, a surviving spouse tells her story of what happened with her daughter and son-in-law:

Darla and Joshua came to spend a week with us. I’d told them about my concerns, but they didn’t want to hear it. They made excuses for Hal’s behavior—They thought the doctor had it wrong. They thought I was over-reacting.

“Not dad,” Darla said. “He’s just a little slow—it’s just the PD.”
“Maybe he thought he was being attacked and that's why he hit out,” Joshua said after a he saw his father-in-law bat at the dog for no apparent reason.

It was frustrating but I understood. It had taken us a while too. When the doctor told us that Hal was starting to have dementia symptoms, we were shocked. We attended the PD support group in our city but no one ever mentioned dementia.

I explained it all to the kids but they weren’t convinced until the day Darla and I went shopping and left Hal with Johsua. When we returned, Josh met us at the door, almost hysterical. “You know what Dad did?” he hissed. “I left him for just a minute—just a minute, mind you!—to go to the bathroom. I told him I would be right back. Actually, I didn’t think he could get out of his easy chair without help but I made him promise he wouldn’t anyway. I had barely made it to the bathroom when I heard a thump and there was Dad down on the floor in the hall.”

“Welcome to my world,” I told Joshua. After that they began to listen to me—and believe me. I can’t tell you what a relief that was. It was as if I didn’t have to bear this burden alone.

Betty was fortunate. Grant and his wife weren’t so lucky. His stepchildren also refused to believe their mom could have dementia. “You are over-medicating her,” they insisted and went to court, got custody of her, took her off all of his medications and put her in a nursing home—where the staff kept her calm with psychiatric drugs. Months later, with the help of his brother, an attorney, Grant got his wife back but she was never the same—her level of functioning had plummeted.

Two very different stories but in both cases, the people who had less contact with Lewy didn’t believe it was there. The way they react depends on family dynamics, with blended families often being less supportive. This is too bad because it is their loved one that suffers, their loved one that becomes worse because of the stress that family strife, change and inappropriate medication inflicts. What can you do to keep this from happening in your family?

• Have a Durable Power of Attorney and a Medical Power of Attorney. Many couples prepare these for each other while both are still well, so that if one of them becomes unable to care for themselves, the other can step right up.  In fact, as early in the progress of the disorder as possible, it is a good idea to visit an Elder Care Attorney, one who specializes in what legal steps need to be taken for someone with a progressive disorder like LBD.

• Keep a journal or start a blog. Some physicians encourage you to send them a daily or weekly email. This is great documentation, supported by the doctor involved. Even if that isn't an option, you can still take it with you to your visits. A part of each visit should be with you alone so that you can discuss what’s in your journal and get important entries into the doctor’s notes. Keep family members informed by emailing them portions of your daily journal entry. (You will want to use your journal for venting too, and you might not want to share that!) Seeing what goes on day by day, can be an eye opener. Or start a blog. It provides an ongoing record of your Lewy journey that your family can visit at any time. Some caregivers have used audio recordings or videos. With the phone cameras we have today, this can be fairly easy to do, and can be quite effective.

• Keep close track of  medications. "Over- or under-medication” is a common charge. PD drugs can cause or increase dementia symptoms and so you need to show that you are working with the physician to keep the drugs balanced. Record everything including the date you fill a prescription and how many pills are in the bottle. Then record the times and dosage each time your loved one is medicated. Adding any unusual results will make this valuable for the doctor as well.

• Develop loving, trusting relationships with family members. Of course, this starts very early and depending on the situation may or may not be possible but it is always worth striving for. Since money is often involved, teaching your children to value family and relationships over more material things will help to build trust--which every caregiver needs.