Snow and Disbeief

It snowed. In Phoenix. In Mesa. In sun country. I could hardly believe my eyes. We can have 90 degree weather this time of the year. What’s it doing SNOWING? Rain, oh, yes. When it rains here, it just pours down, and then an hour later, the roads are dry. Hail, yes. We usually have a hail storm once or twice a year. But snow? Never. Well, a couple of times it got to North Scottsdale, about 30 miles away and quite a bit higher. But yesterday, I was driving on Main Street in Mesa in snow. I lived in Anchorage, AK, for many years. I learned to live with it. My kids sledded, skied, made snow angels, had snowball fights, the whole deal. I drove with snow piled six feet high on the side of the road. I drove on ice covered by snow. Oh, yes, that was tricky! And I moved away to avoid the snow. I gladly gave away my heavy coat, my snow boots, my gloves. And here I am, driving in the snow again.

And why am I ranting about snow in my LBD blog? Well, because the disbelief that I felt when I saw actual snow on my windshield must be similar to what a person feels when they get that LBD diagnosis. Well, I’m sure my feelings weren’t as strong, or as dismayed, but they were definitely as unbelieving. I hadn’t planned for snow. In fact, I’d planned against it. I had a lot of things to do and NONE of them involved snow. “Why is this happening to me?” I thought. “Why am I driving in snow again? I’m not prepared. No snow tires, hey, not even very good tires, period.” And the family who gets a LBD diagnosis is saying stuff like that too: “Why us? I don’t believe it. It must be a mistake. We aren’t prepared. We have lots of things to do and NONE of them involves dealing with such a debilitating disorder.”

The snow soon went away. True, I can still see it very low on the hills, but I don’t have to drive in it anymore. And soon, it will even be gone from the hills. That’s the difference between my situation and the family with Lewy. Lewy doesn’t go away. It may recede, but it never leaves. Just as I learned to live with snow in Anchorage all those years ago, the family has to learn to live with Lewy. They learn to traverse the scary, difficult roads of delusions, choking, etc. and survive. They can even learn to make snow angels, that is, to find enjoyment. The difference is that eventually, I escaped. You don’t escape from Lewy. You have to play it out. That’s where the similarity ends.

In the Hospital

Jim’s been in the hospital since the 13th. He went to play golf and as soon as he was back I left. When I came back, I found that he’d tried to phone me. “When are you coming home? I, uh, I’m feeling awfully sick," was the message he left. I didn’t know why it went to voicemail. I still don’t. But it did. And so I didn't know he was sick until I got home after a leisurely lunch with my friends. I felt so bad. When I listened to the message later made me feel guilty all over again. I’ll bet you can identify!

Before he called, he’d gone to the store and brought home roses for me for Valentine’s Day, the dear boy! But then he started feeling bad, and by the time I got home, he was really hurting. We left for the emergency room right away and, after the usual long wait, he was admitted. The next morning I brought the roses to him. The good thing is that he hadn’t felt like eating since breakfast—and that’s the first treatment they try for a flare up of Chrone’s Disease (inflammation of the bowel), which is what Jim has. No food. Well, that and drugs and an NG tube to relieve the pressure and LOTS of tests. They want the gut to rest and hopefully cure itself. That’s what they tried three years ago when he had his first episode but it didn’t work then. He had to have surgery. We are hoping that we got him there a lot quicker this time and that it won’t be necessary. Working with LBD as we do, we know how dangerous surgery is for the elderly…and like it or not, Jim fits that, chronologically at least.

So of course, I always look at what’s going on with us and think about how it compares to what goes on with LBD families. Hospital visits are a much too common event for a PwLBD. Urinary infections, dehydration, falls, and so on. The list could go on and on. And hospitals are lonely, scary places. Try to bring something of home for the room. Family pictures, a favorite throw for the bed, anything that makes the place feel more like home. For Jim, it is his computer. When he has it to play with, he's happy—or at least happier. Oh, and me. He doesn’t have dementia and so he does fine by himself. But he still feels better when I’m there. If it affects him that way, imagine how much more important it is for a PwLBD to have their caregiver is close by. Forget the flowers and the cards, just be there yourself. For Jim, it is a feeling of being loved, cared about. For the PwLBD, it is that, but there’s more, it is also a feeling of safety.

I’m always cold when I visit Jim. I know that’s because they’ve learned that the colder a place is, the harder it is for air-borne diseases to travel. But PwLBD don’t stand the cold well. Ask for extra blankets or better yet, bring a warm, familiar robe from home. And don’t forget the slippers if your loved one is up walking around. The socks the hospital provides may keep the feet warm but they aren’t great for walking, and if your loved one can get up and walk at all, you need to encourage this.

Don’t forget yourself when you visit. Bring a “hospital kit” for yourself: a book, a craft project like knitting, a snack, and your cell phone. (Yes, I brought my laptop too.) Save your back. Use a wheeled shopping bag or even a small wheeled suitcase cart stuff to and from your car. Go to the cafeteria for meals. Take walks. Even leave the hospital and run errands. Go home in the evenings early enough to enjoy some mindless TV or a good soak in the tub. Take care of yourself too!

Bulletin: As of Saturday night, Jim is home and feeling well!

Traveling with LBD

Like all people with dementia, PwLBD* are prone to slow thought processes and an inability to deal with extremes. They also have damaged perceptional abilities and a sensitivity to light. All of these will cause stress and that’s the kicker. The more stress, the more LBD symptoms, the more acting out, the less easy it will be to travel. On the other hand, the more comfortable anyone with dementia is with their surroundings, the fewer problems there will be.

Many people travel with mild LBD and do fine. Plan ahead, keep the stress down, and always travel with a caregiver. Jim and Annie(1)  flew to Europe. Judy and Dean Jennings(2)  traveled to Europe several times. Barbara and Bill Hutchinson (3)  took an RV from Alaska to Florida. It can be done—if you go early enough.

If you fly, buy travel insurance and be prepared to use it. If your loved one acts out when you get on the plane, it isn’t going to get better. Get off. DO NOT travel unless your loved one feels well. It will almost assuredly make the LBD worse—and with the added stress, it may not bounce back. Stay home and take care of the problem. Then try again.

Make it the same. Taking trips in a familiar vehicle, through familiar countryside, to familiar places will be easiest. Add anything unfamiliar, and you add stress. Thus, a trip that you’ve made many times in the family car to see family will be much easier than a trip in a strange car to a strange destination. Add people the PwLBD doesn’t know well, such as a tour group, and you increase the likelihood of stress. A person who is used to flying will be able to do so comfortably longer than a person who isn’t used to flying.

4. Slow processing. If the scenery flashing by the windows of a fast moving car is confusing and scary, consider traveling at night, when there is less to see. (But the flashing lights may be just as bad.)

5. Be aware of delusions. In an effort to make sense of their confusion, the PwLBD may develop frightening delusions. Jim and Annie were driving in an area of rolling hills but Annie saw valleys and cliffs and believed Jim was driving much too close to the edge. Another time, she saw an amusement park and believed it was a huge fire. However, dementia also causes a decreased attention span. Thus, the best solution for such delusions is to leave. “Out of sight, out of mind” usually works well!

6. Avoid extremes—too hot, too cold, too tired, too excited, too…..  These all cause stress.

7. Build in familiarity—sameness. Take along a favorite blanket, familiar photos, etc. to help the PwLBD feel at home. Keep a regular routine.

8. Travel during optimal times. Take advantage of LBD’s fluctuations. When is your loved one most functional during the day? This is the time to schedule your outings, or to schedule the bulk of your traveling during longer trips.

9. Plan, plan, plan. The more you plan, the fewer surprises, the less stress. Plan ways to avoid extremes and add familiarity. Plan short trips to avoid tiredness (probably no more than a few hundred miles a day). Take extra clothes for warmth and for familiarity. Take familiar routes whenever possible. Consider any emergencies you might encounter and how you will deal with them. Talk to the doctor about emergency meds to take.

10.Include your loved one in the planning. Even if they don’t remember doing it with you, they will react better to the stresses of the trip. Something in their subconscious mind does seem to remember and they will feel more control.

11. Use respite care instead. Marge wanted to attend her niece’s wedding. She asked her support group if she should take her husband, whose LBD was advanced enough that delusions and active dreams and were very common. They suggested respite care. As the LBD gets worse, the stresses are too difficult to manage and traveling can be a nightmare. Many care facilities will allow you to place your loved one with them for a few days on a space available basis. Its good business. This can be a welcome break for the caregiver too.

12. For more ideas, go to our website and read Travel Guidelines by Geri Hall. View and download
*PwLBD: person/people with LBD
(1) A Caregiver’s Guide to Lewy Body Dementia by Helen and James Whitworth View and buy
(2) Living with Lewy Body Dementia by Judy Towne Jennings  View and buy
(3) Making a Difference, One Person at a Time.  Read article