Caregivers Get Sick Too

This week, I have the flu. Yes, I had my flu shot but I’m still sick. Awfully sick. I’m spending more time in the bathroom than anywhere else. I’m afraid to get too far away for fear I won’t make it back in time. And I feel nauseous. Lying down helps, and so I’m spending a lot of time lolling around in bed, hoping I’ll feel better when I get up. And I usually do, for a little while. That’s when I do stuff like this.

But I can hang out in the bathroom. I can stay in bed. I can do as little or as much as I want. My husband is here; he picks up the slack. And so I am fortunate. If he had LBD and I was his caregiver, it would be very different. I wouldn’t have the freedom to be sick, to hide in the bathroom, to stay in bed. And if I did, who knows what would happen. And so, I’d be out there, trying to carry on. Any of you recognize that scenario? I’ll bet most of you have been there!

I’ve been thinking as I loll around in bed that caregivers need a backup plan. What do you do when you are too sick to care for your loved one? Do you soldier through anyway? I’ll bet a lot of you do. But you aren’t doing anyone any good. Here’s why:

• You can’t do a good job when your mind isn’t fully there—and when we are sick, you know it isn’t.

• When you aren’t fully present, your loved one senses it (remember they are very perceptive!) and feels deserted—and showing it by acting out in some way.

• If you don’t take care of yourself while your illness is minor, it can and often does get much worse. They you may find yourself in the hospital and unable to care for your loved one at all.

And so, what is your plan for when you get sick?

• When I was my sister’s caregiver, we had a respite caregiver who took over occasionally to give me a weekend away. We started early and so it was something my sister expected and accepted. If I’d been sick, I could have had her come in for that too. However, when I developed a bad cold, I did as most caregivers do—I struggled on. And I gave my sister my cold. I felt awful! Sometimes, it is no favor to “struggle on.”

• Do you have a place where you can “hide” and take care of your illness. If your home is large enough, maybe you can stay home, although the temptation to “help out” is always there if you do. But if your place is small, find a retreat. Stay at with a family member, a friend, or if necessary, a hotel. But not at home.

• Do you have access to any other type of respite care, such as hospice? That is a wonderful blessing. Get your loved one on hospice as soon as possible so that you have access to all of their wonderful services. (No, it doesn't mean they have to be very near death!--more about that in another blog...or check with the hospices in your community.)

• Do you have relatives or friends who will come in for a while, or several days? As I did, try to start using them early on, so your loved one is used to the occasional “change of guard”—and your volunteers grow used to the changes in your loved one too.

• Do you have any other ideas to share with our readers?

 Remember that taking care of yourself is one of the most important—and loving—things you can do for your loved one. Where would they be without you?

Apathy and Activities

Dementia caregivers know they need to find ways to keep their loved one’s brain working, ways to stimulate those still active brain cells and keep them functional as long as possible. Most of these ways require participation by the caregiver. One of the first things Lewy steals is initiative and motivation.

Harry explained, “Even before Edna lost much if her thinking ability, I noticed apathy; Edna’s “self-starter” was damaged. When I suggested something, she was glad to follow along and seemed to enjoy the trip as much as ever. But she never started anything herself, never asked to do anything.”

“That was a couple of years ago,” he continues. But the apathy remains. ‘Let’s do a puzzle,’ I’ll say to Edna. She’ll nod.  She doesn’t show much emotion—those days are over for the most part, but she will usually agree to do whatever I want her to do.” Once they start working on the puzzle, designed especially for people with dementia, Harry can tell that she’s enjoying herself. “She reaches for a piece,” he says, “tries it in a couple of spots and pats it several times when it finally fits.” True, she tires before the puzzle is done, but it will be there tomorrow for another challenge. (You can get puzzles like this on from our LBD Book Corner on our website.)

Janice sits with her mom every afternoon and asks about the photos in the family  album. “Do you remember this, Mom?” “What was happening here?” “Who is this?” They spend a few minutes each day with Mom reminiscing. Janice learns more about her family history while Mom exercises her brain. A win-win situation for both of them—but it probably wouldn’t happen if Janice didn’t make it happen. “Mom used to be such a take charge lady,” Janice said. “But not anymore. Now she would just sit and stare at the wall or her lap if I didn’t encourage her to do something.

Robin and her dad, Adam, spend time reading each day. Adam had been a teacher, and a voracious reader. Now, Robin explains, “Dad can’t read, hasn’t been able to for a while now. But he is very attentive when I read. He follows right along.” Robin has discovered an important aspect of LBD—comprehension usually remains intact after other skills slip and disappear. Even though Adam cannot read himself,  he can understand what Robin reads. This is why you need to be careful what you talk about in front of your loved one who is apparently incoherent, sleeping, or not paying attention. But it is also a way for some mutually enjoyable together time, “reading” something that both of you find interesting.

Caregiver and loved one spend many hours together every day. However, they are usually playing the nurse-patient game; like it or not--that is what is needed most as LBD takes its toll. Working on an abbreviated version of a once-loved hobby stimulates the brain. However, the biggest the reward for both participants may be the chance to do something together again as a team, even for a short time. 

Caregiver Guilt

November is National Caregiver Month—the time for all of you caregivers to be specially recognized. You make it possible for your loved one to stay at home, or if they are in a care facility, to continue to get the best care possible and to feel loved—no small thing, that. Wives make up many of these caregivers. This is one wife’s story.

When my husband developed LBD, I felt I’d failed. I didn’t know what it was that I’d done or not done to keep Richard from succumbing to this awful disorder, but I must have been at fault. After all, it was my job as wife and mother to keep my family well. And when Richard became so ill that we had to move him to a nursing home, I felt I’d failed again. Once he was sick, it was my job, as a good wife, to take care of him. And now, I’d passed that job to someone else. I was physically unable to care for him at home, but still, it was my fault somehow. I’d failed again. I was so filled with guilt that I could hardly bear to look at Richard.

I forced myself to go to my support group and I admitted my awful guilt. I expected them to agree with me, to say they felt guilt too. And then we could wallow in it together. Some did. But one wise soul called me on my “pity pot.” She told me, “You are using guilt to try to control the past. And it doesn’t work. It just makes things worse. Look at what it’s done to you.”

I hated to admit it, but she was right. I was a wreck. I couldn’t sleep, I was living on junk food and I was hiding, even from my husband who, I knew, still needed me. I couldn’t stop Richard from getting LBD, or later, keep him at home, and so I tried to control fate with my guilt. And it wasn’t working. I didn’t feel in control at all.

“Let it go,” she said. “You are still Richard’s wife, and his caregiver. But guilt keeps you from doing either of those well—if at all. Let it go and get on with your life.”

I did. Every time I started feeling guilty, I made myself stop. That’s when I realized that my job was far from done. Richard needed me every bit as much as he had when he was home. I was his security, his emotional support. I was the staff’s resource for what worked and what didn’t work for him. Now that I don’t carry a huge load of guilt and I’m not burdened with all the physical care, I can be Richard’s wife again. What a blessing that is—for both of us.

Getting Asleep and Staying Asleep

Support group member Amanda reported, “Leo was up and down all night long again last night. He was sure he was late for an appointment. I tried to tell him it was 3am, and besides he didn’t have an appointment today, but he still worried. He was up again in an hour, brushing his teeth. ‘We’re late,’ he told me again. I have to admit that by the fourth time we were up, I was getting testy. ‘Go back to bed,’ I told him a bit too sharply. That worked, finally. He got back in bed and pretty soon he was asleep again. I know how important getting a good night’s sleep is for him—for both of us really. I hate it when I lose my cool. I know it’s not his fault. Surely, there’s another way?”

This is a cry for help that we hear over and over. Sleeping pills aren’t the answer. They are among those that can cause irreparable damage for our LBD loved ones. Here are some safer suggestions:

During the day:

• Exercise: Most LBD caregivers know that “exercise is better than most dementia drugs” for maintaining cognitive function. It is also better than most sleeping pills for fostering a good night’s sleep. However, make sure the exercise occurs 2 hours or more prior to bedtime.
• Keep active: Anyone sleeps better if they have been active during the day. Even if movement is limited, stimulate with other activities, talking, hobbies, and such.
• Keep the peace: Anything that upsets your loved one during the day may come back to haunt you both at night. Do everything you can to maintain peace and lower stress. (See our August 31, 2012 blog on stress reduction for a start.)
• Eliminate time worries: Don’t tell your loved one about future plans. As dementia progresses, the concept of time is lost. Everything is in the here and now. And so when your loved one remembers that you said he has an appointment for day after tomorrow at 4pm, he feels he has to be there NOW.
• Bright lights: These help to maintain circadian rhythms. First, encourage exposure to as much natural daylight as possible. Take walks outside and get in some good exercise too! If that doesn’t seem to help, consider setting up a bright-light box, the kind used with seasonal affective disorder (SAD). Have it turn on automatically a few minutes before morning wakeup time and let it stay on for about a half hour. Follow up with exposure to natural light during the rest of the day.

Preparing for Bedtime:

• Atmosphere: Make the bedroom calm, comfortable and dark. Have a soothing color scheme, darkened windows, a comfortable bed, good ventilation and a minimal number of blinking lights from clocks, radios and such.
• Keeping time: If your loved one still has a concept of time, a large clock that’s easy to see from bed may help to decrease excessive getting up. 
• The last few hours of the day: This should be the calmest time of the day. No stress, no excitement. If bathing is stressful, do it earlier in the day. Ask family and friends to refrain from calling at this time. If TV is part of your normal routine, find the most calming shows you can to watch. You can also find  many web pages that offer soothing content. Three are: a) Soothtube offers Youtube shows with a variety of content and soothing voices, b) Serenity Channel offers beautiful pictures and soothing music and c) PaulFromStokeUK offers beautiful music and photos scientifically designed for relaxation. He also has DVDs for sale.
• Routine: Set up a routine that includes a set bedtime, low stress, enjoyable activities, the usual bedtime preparation, soft music, etc. What you include depends on the individual and what they enjoy. Once the routine is set, try not to vary it.

Medications:

• Melatonin: This is a natural hormone that triggers wake and sleep cycles. It has been used for years as a fairly safe sleep aid, even with LBD except that it may increase depression—already a problem for our loved ones. However the depression will go away when the drug wears off and so it might be worth a try. Using bright light therapy may decrease the depressive side effects.
• Medication time change: Ask the doctor if your loved one’s medication times can be adjusted so that those that encourage wakefulness, such as Exelon and Aricept are given in the mornings and those that calm such as Seroquel are given in the evenings.

Website: http://lbdtools.com

Active Dreams, PD and LBD

REM Sleep Behavior Disorder (RBD) is sometimes called “Active Dreams” because people who have it physically act out their dreams in their sleep. There is a chemical switch in the brain that turns off mobility during dreams, allowing a more restful sleep. When the switch is damaged, a sleeping person may thrash their arms and legs around, talk out loud and become violent.

When the brains from people who had been diagnosed with RBD, or Active Dreams, were autopsied, researchers continually found Lewy bodies even when no other Lewy body disorder was present. Thus we consider the disorder a member of the Lewy body family, usually the first one to appear. Although RBD can occur alone, it can accompany Parkinson’s disease and both types of Lewy body dementia and may show up before any other Lewy body disorder. Active Dreams have long been considered a serious predictor of Dementia with Lewy Bodies (DLB). They are often the first precursor to appear, and can show up decades prior to dementia symptoms.

Recent studies have explored the relationships between RBD, PD and LBD further. They have found that there is at least a 65% chance that a person with Active Dreams will develop an alpha-synuclein-based disorder within an average of 11 years of an RBD diagnosis.  Alpha-synuclein is the protein that when damaged, can become Lewy bodies, which causes both PD and DLB. The other member of this group is Multiple System Atrophy (MSA) which affects the Autonomic Nervous System similar to the way LBD does. MSA does not belong to the Lewy Body family, but it is a close cousin, with its cause being another type of damaged alpha-synuclein protein. 

One of those studies found that Active Dreams developed prior to PD over half the time. Of this RBD first, then PD group, half also showed signs of Mild Cognitive Impairment (MCI) prior to their PD diagnosis. All of this RBD/MCI first, then PD group, all went on to develop dementia before the four year study ended. None of those with Active Dreams but no MCI at Parkinson’s diagnosis developed dementia before the end of the four years.

Thus, anyone who experienced Active Dreams prior to their PD diagnosis should be examined for MCI. If this is present, it is imperative for you to make plans for the future—while you still can. Dementia will likely follow soon. If MCI is not present, then dementia may wait many years to appear—if it ever does. However, be forewarned: you still need to plan ahead. People have been known to develop dementia 50 years after the onset of RBD. Therefore, this does not give you an “all clear.” It simply gives you hope of more years of dementia free living.

Fluctuating Cognition: A Setup or a Gift

Donna is fairly new to the LBD journey. Her husband, Albert, was diagnosed with mild Lewy body dementia a year ago. There was an initial disbelief over the diagnosis, but once she and Albert and their two grown daughters accepted that they were on this journey, it wasn’t so bad. In fact, Donna said, “It was really a little easier. Now I understood why Al had such a problem doing things he’d done for years, like putting away his clothes properly.”

But then, as it does with everyone eventually, Lewy got worse. Al began having delusions and accused Donna of stealing his money. When he got physical, Donna became frightened and called his doctor who admitted him to a psychiatric hospital. Not the best choice for someone with LBD, but at least they were apparently aware of Lewy’s drug issues and didn’t try to calm him with antipsychotic drugs.  And Donna was assured that Al, a veteran, was eligible for Long Term Care benefits. She applied immediately.

Two weeks later, Donna was pleased to hear that her application was “one step away from acceptance.” By then, Al’s delusions had stopped and he began campaigning to go home.  Since he seemed to be his old, mild self, the doctor complied after a few days. Donna was ecstatic! “He’s so much better—why, we even uh, did it, last night. That’s not happened for so long it’s a wonder I remembered how!”

And then, Al was delusional again. This time he thought Donna was a nurse in bed with him—but still after his money. This is when Donna showed up at a local support group, devastated. She told the members, “I thought he was well. But now, he’s just as bad as he ever was—No, he’s worse. He didn’t even know me!”

Fluctuating cognition (see our May 25 blog) can be a terrible setup for the new LBD caregiver like Donna. If you believe, like Donna did, that the Lewy rollercoaster isn’t going to go back down, that the “recovery” is going to be permanent, you will be horribly disappointed when your loved one starts acting out again. The more experienced LBD caregiver accepts the gift and enjoys this “time out” with her loved one, making the most of it while it lasts. But she knows it is temporary and although of course, she’s sorry to see this time of awareness end, she isn’t surprised.

The story doesn’t end there. Al went back into the hospital but now Donna was told that he was no longer eligible for VA long term care benefits…he had recovered and didn’t qualify anymore. She’d have to reapply! Again, the people who needed to know—the doctor, the facility, even the VA—weren’t aware of Lewy’s fluctuations.  

October is Lewy Awareness month. It’s almost over for another year, but the need continues. The list of people who need to know is long…family members, doctors, nurses, hospices, VA officials, and many more. We need to extend Lewy Awareness to all year long, not just for one month. And we need to focus on things like cognitive fluctuations as well as the drug problems which, although very serious, are not the only way that our loved ones get short changed or even damaged by lack of knowledge in the medical community. 

Maybe It Isn't Dementia!

People are becoming more concerned about their cognitive health, and that’s good. As our population becomes more elderly, and as we become more exposed to the many toxins of our industrialized communities, dementia is becoming endemic. We should be concerned. However, let’s not over react.  Before you become concerned that you or your loved one has LBD or another non-curable dementia, have it checked out. It could be something as simple as dehydration!

Dehydration. When 80 year old Alice became disoriented, her concerned daughter took her to the doctor, who told Alice she needed to drink more water. With her daughter’s continual encouragement and monitoring, Alice did—and the dementia went away.  Even if dementia is already present, dehydration can make it worse. John’s PDD made him too shaky to handle a cup easily and made swallowing difficult. When these problems were dealt with so that he could get more fluids into his system, his dementia decreased.

 Brain tumors. Some brain tumors can cause dementia symptoms. Often surgery can reverse this. This is why you don’t say, “Oh, well, I’m just getting old and some forgetfulness, etc. is to be expected. If you are feeling like you are having cognitive losses, have it checked out!

Malnutrition. Dr. Rosenthal of Buffalo, NY, reports that 30% of the people who present in his clinic for cognitive impairment show signs of malnourishment.  If the body is so undernourished that it can’t function properly, the brain suffers as well.  A good healthy diet can reverse dementia caused by malnutrition—and slow progressive dementias as well.

Depression. Rob, newly retired from his job of 30 years, felt depressed. His wife, Jody, noticed that his thinking wasn’t as clear and his attention span had greatly decreased. His father had LBD and she was afraid that Rob was developing dementia as well. She convinced him to see his doctor who prescribed therapy to help him over his situational depression. As he began to adapt to his retirement, Rob’s depression lifted and his cognition improved greatly. Jody’s concern was valid. Depression is a major symptom of MCI, especially the type that precedes LBD. However, it is also the greatest cause of curable cognitive impairment.  And so be proactive and find out if this is something that can be treated by life style changes, therapy, drugs or even diet.

Drugs. Anyone dealing with LBD knows how dangerous drugs can be for our loved ones.  However, even if you aren’t at danger for LBD, drugs can decrease things like reaction time, attention and memory. (Think of all those medications with warning not to drive while taking them.)  Remove or change the drugs and the cognition will likely improve.

The bottom line is that when you notice cognitive losses, have them checked out. Don’t just assume it is part of the aging process—or even that you actually are having early symptoms of dementia but there’s nothing you can do to change that.  Some cognitive impairment is reversible. And when it isn’t, when it really is a forerunner of dementia, you can usually slow it down.