Holiday Suggestions

The information in this blog is still so pertinent that even though it was printed last year, here it is again. There are some ideas here to help you make your loved one's holidays, and yours too!,  more enjoyable and less stressful. Hope they help!

The holidays are a time of feasting, family and fun. At least, that is what we hope they will be. When Parkinson’s or LBD becomes a part of the family, some adjustments may need to be made. While feasting may still be a part of the agenda, changes in the kinds of food you eat and even when you eat it might be advisable. Family can be a wonderful blessing but often our expectations outreach reality, especially at holiday times when we want everything to be perfect. And finally, what is “fun” changes as one’s body and responses to stimuli changes.

Much of our holiday food is made with simple carbohydrates (sugars, high fructose corn syrup and white sugar). It is becoming clear that these foods are not supportive of good health in general, and especially not of good cognition—always an issue for anyone with a Lewy body disorder like PD or LBD. For the cook, include more complex carbohydrates like fruits and vegetables. For people at risk for cognitive impairment, go ahead and enjoy some of the traditional foods, but savor smaller helpings and resist taking seconds.

Proteins and saturated fats (think “animal fats”) also play a prominent part in holiday meals. Dopamine and protein share “carriers” for crossing the intestinal wall and the blood brain barrier. Competition for these carriers will delay or reduce the medication’s effect. Meals that are high in saturated fat take longer to digest, thus delaying medication absorption. All of this may leave you feeling sluggish and fatigued. Try taking your medication away from meal time, with a small amount of food to avoid nausea. For the cook, consider serving fish like cod or salmon, and using omega-3 fatty acids such as olive oil instead of saturated fats whenever you can. The omega-3s digest easily and fish digests in about half the time as it takes for other proteins.

As Parkinson’s or LBD advances, one’s tolerance for stress decreases. Families are important but they can also be huge triggers for stress. There can be expectations that end in disappointments, financial pressures over spending issues, unresolved family-of-origin issues that pop up when a family member comes to visit. Make an effort to keep stress levels low during this time any way you can. Diffusing some soothing lavender or rosemary into the air, practicing deep breathing or add some soothing massage sessions are some suggestions. Also ask family members to keep conversations non-argumentative and focused on more pleasant subjects.

Fun. The holidays are times of parties and family gatherings and activities that you may not do at any other time. For the person with Parkinson’s, preparing a big family meal may no longer be possible. Or if cognition is slipping, the board games after dinner may have passed the point of challenge and instead, become painful evidence of lost abilities. Think ahead and find ways to adapt. Can you order a prepared meal or share the responsibilities with other family members? Can you play an easier game or do something else like look at old family photo albums? Thinking ahead can make all the difference where fun is considered.

For information about Lewy body disorders, read our books:

A Caregivers’ Guide to Lewy Body Dementia

Managing Cognitive Issues in Parkinson’s & Lewy Body Dementia

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.