The Whitworths of Arizona, bringing science to you in everyday language.

Friday, March 27, 2015

Adjusting to Residential Care

Last week we talked about entering residential care. This week, the blog is about the adjustment period. Banner Alzheimer's Institute, in Phoenix AZ offers a handout that says it better than I could:

The vast majority of people with dementia have difficulty adjusting to a new home environment. For at least two weeks the person can't find things, is besieged with new people and routines and has feelings of frustration and/or anger. Here are some suggestions for helping a loved one adjust:

Visit often, even if the facility discourages this. Make the visits BRIEF. 10-15 minutes are enough for you to know your loved one is well-cared for and to give them reassurance. A 3-hour visit is going to cause agitation.

If the loved one demands to be taken home, DON'T try to explain. Look at your watch and say, "I have to go now." It will break your heart, but will minimize the behavior after a few times. Many patients start the "take me home" pleas after a 30 minute visit when they get tired. Take it as an indication that it is time to go.

Expect the person to be agitated and angry, but stop beating yourself up about it. You did what had to be done. Your loved one needs to grieve. To expect happiness is unrealistic.

Take something to do. Do their nails or give them a hand or foot massage, have a snack, listen to a new piece of music or share an activity. Once you are done, it is time to go. Have the staff divert your loved one to an activity such as a meal.

Call before you come so you know what kind of day your loved one is having. If you know they are agitated and having a bad day and if you don't think you can face it without becoming upset, don't go. Wait until later, when they are not so agitated. Agitation is contagious and your poor response will just make their already difficult mood worse.

Talk with the staff. Smile. Find the staff doing something right and complement at least one on each visit. There is nothing worse than the family who comes in with their microscope looking for flaws. They will become apparent soon enough -- we are talking about working with demented adults here. Know that the facility and staff have no magic for dealing with behavior problems. If it was difficult to manage at home, it will be worse in the care facility -- especially with 7+ other people who are also demented.

Before you leave, talk with an administrative staff member to see how things are going and what you (as a team) can do to improve care throughout the adjustment.

DO select an activity-based program! (It keeps residents alert longer.) If your loved one is not a socializer, ask the staff to let him have daily alone time, and introduce him more slowly to the group.

Last, do not let the adjustment period dissuade you from the placement. It most likely will work out.

For information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia

Managing Cognitive Issues in Parkinson’s & Other Lewy Body Disorders

Friday, March 20, 2015

Moving into Residential Care

Last week we talked about the caregivers and their issues with the move of a loved one from home care to residential care. This week is about the loved ones. The decision has been made. Your loved one is no longer safe at home, for whatever reason. This process can be wrenching for both of you, even when it is voluntary. How do you get your loved one into the new home with the least amount of stress? Ideally, this process started with the first diagnosis of dementia.

Talk about it early. Talk about the possibility of such a move while there is still reasoning ability. Jan and Peter talked first about the possibility of residential care right after his diagnosis. He begged her to "never put him away." Jan knew she couldn't promise this. Instead, she told him, "I will keep you as long as it is safe for both of us." You don't want to make promises you can't keep!

Cry. Likely, you are as upset as your loved one is about the idea. Go ahead and cry. Jan said, "When I cried, it gave Peter permission to cry too. It really made us feel close to grieve this together." Crying is an emotional response. Much more than talking, it will bring you together and let him know you aren't deserting him. A warning: like the talking, crying should be done well in advance of the move. It is too stressful at moving time.

Chose something close. Sue finally found a facility that worked for her mother-in-law. It was an hour away. Now, Sue finds this a great drawback. Not only does she spend far too much time on the road, she can't visit as often as she could otherwise. Norma finally settled for a place that was only five miles from her home. "It isn't as nice as some of the others," Norma explained. "And it is more expensive than some of them too, but it's close enough I can visit a couple of times a day and still have lots of time for myself. And I think I probably save a enough on gas to make up for most of the extra cost.

Consider Adult Day Care. Larry took his wife, Eve, to the Adult Day Care program that their chosen facility offered. It gave him some respite and allowed Eve to get acquainted with the place. When the next step came, and she moved into Assisted Living, both of them were more comfortable with the idea.

Just do it. Nancy wanted to involve Bill in his move. "We've always done these things together," she explained. Her support group discouraged her. "Bill will just worry and fret," they warned. The group is right. Moving involves major change. For someone with dementia, even voluntary change leads to anxiety, which increases LBD symptoms like hallucinations and delusions--and acting out behavior.

To avoid these issues, Nancy needs to keep the time up to moving day as calm and uneventful as possible. This means not telling Bill when he is moving. If it isn't talked about in the last day or so, he will likely forget any earlier conversations. Nancy can pack up and bring Bill's belongings to him after she has delivered him to his new home.

This may sound unfair, but the rules have changed. Dementia decreases the ability to understand cause and effect. Likely, Bill can no longer understand why he must move. There's also the fear of abandonment.Thus, not letting Bill know about the move is like the therapeutic fib: when it is done for his good and to avoid damaging stress, it is therapeutic.

Use a little medicine.  Matthew's doctor suggested that he take a small dose of Seroquel, starting a few days before his move and lasting a week or so afterwards, while he was getting situated. . Dorothy reported that it really helped to smooth the way for the move. "Matthew wasn't nearly so upset as I was afraid he'd be," she said. Even for the family who avoids drugs as much as possible, there are times when they can be very useful and this is one of them!

Next week will be about the first weeks in residential care.

For information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson’s & Other Lewy Body Disorders

Friday, March 13, 2015

Dementia Drugs or Not?

We talk a lot about being very careful about the drugs our LBD loved ones take. What about dementia drugs (Aricpet, Exelon, Razadyne and Namenda)? They definitely aren't as scary as the drugs used to manage behaviors, but still, caregivers wonder if they are safe. And even if they are safe, are they effective? Should our loved ones bother taking them?

The bottom line is that we believe that in most cases, these drugs fairly safe. We also believe they can be quite helpful, although not necessarily in the way one might think. The amount that dementia drugs improve cognition can be fairly limited, and if this were their only effect, they might not be worthwhile. However, they can be quite effective in decreasing symptoms such as hallucinations, paranoia, anxiety or even depression. Further, they do this with fewer and less serious side effects than many of the drugs most often used for the behavior problems more common with LBD than with Alzheimer's. The downside is that eventually, they quit working.

First, some basics:

  • The body is a wonderful "drug factory" that builds chemical compounds, then breaks them down and rebuilds them as needed.
  • Acetylcholine, one of the chemicals targeted by Lewy bodies, facilitates cognition and other brain functions.
  • Lewy bodies deplete acetylcholine, causing dementia and other LBD symptoms. Without adequate acetylcholine, the brain cells that use it to weaken and eventually die.
  • All dementia drugs require live cells to work.
  • No dementia drug stops the Lewy bodies from destroying brain cells. As more and more cells die, the drugs become less effective.

Aricept, Exelon and Razadyne, all act to inhibit the body's natural breaking down process. This increases the amount of available acetylcholine so that there are fewer LBD symptoms.

Namenda works in a similar way with a different set of chemicals that aren't so specific to LBD. It is usually prescribed in combination with one of the first three drugs. Its addition will often increase the waning effects of the first group of drugs, for both cognitive and non-cognitive symptoms. While Namenda does seem to be effective longer, its action is still temporary. Eventually, there won't be enough live cells for it to work either.

As for safety, these drugs all tend to be all pretty tough on the GI tract--on the stomach and gut. Each drug is a little different. Doctors will usually try oral Aricept first (its generic version is the least expensive). It there is a problem with it, the doctor may try oral Exelon or Razadyne next. If these cause too much GI distress, Aricept and Exelon come in patches that bypass the GI tract and decrease this problem significantly. Patches are more expensive but they do have fewer side effects. Although Namenda has the same GI issues as the other drugs, our experience is that most caregivers report that their loved one can take it without a problem.

And so, yes, for most LBDers, dementia drugs can be considered a very helpful part of their treatment--especially for the non-cognitive symptoms that can be so difficult to treat. However, always remember that each person will react to drugs differently. If your loved one may be one of the few who have bad reactions to these drugs, then consider some of the many non-drug methods available, such as massage, aromatherapy or music therapy. In fact, consider these anyway! Their use will almost always reduce the amount of drugs that are needed overall. In fact, no dementia drug is as effective as exercise (and probably several other non-drug therapies such as music) for improving cognition!

For more information about Lewy body disorders, read our books:

A Caregivers’ Guide to Lewy Body Dementia

Managing Cognitive Issues in Parkinson’s & Other Lewy Body Disorders

Friday, March 6, 2015

An Attitude of Gratitude

This week's blog is from LBD caregiver, Lisa Cooke, printed just as she wrote it. What wonderful advice!

People often tell me they can’t believe how well I’m handling our situation. This never fails to shock me since I know the real me and the moments I want to run away and never return, but whenever I hear their comments, they cause me to reflect on how we deal with Lewy Body and life in general.

I think most of our ability to cope comes from a core belief in an attitude of gratitude that came from my mother. No matter how horrible a situation is, there is something hidden inside that we can be grateful for. It’s a mind game of sorts, but it works something like this:

Instead of thinking: “Oh no, he needs a walker.” Think: “Thank goodness there are walkers and wheelchairs to help us.”

Instead of thinking: “I can’t believe my husband needs diapers,” Think: “Can you imagine what this would have been like before there were disposable diapers?”

Instead of thinking: “Why did this happen to us?” Think: “Thankfully, we got our children raised before this hit.”

Instead of thinking: “We had to sell our dream home to move into a retirement community.” Think: “I’m so glad we had enough equity in our home to afford this CCRC.”

Instead of thinking: “I am so alone and lost,” Think: “I’m so glad I have the support group to talk to.”

Sometimes the game is tougher than others. Those days when he’s hallucinating and up all night…those are the days when the best I can find is that I’m glad I’m retired and don’t have to get up in the morning to work. But that thought really does make me grateful.

My mother buried two daughters, one at the age of 12 who was born with severe cerebral palsy, and another who died from breast cancer at the age of 49. Mom provided care for both and with the second; she was the fulltime caregiver for my father who had PD at the same time my sister was dying from cancer. She has spent 36 years of her life being a primary caregiver to someone, but she always smiled and laughed and acted like her life was totally normal. She and Dad traveled, went out to eat with friends, and attended church up until the last three weeks before he died.

I learned a lot from her. I learned that you must deal with the hand you’re given whether you want to or not. She always says, “You just do what you gotta do,” and she’s right. Our marriage picked up a third member named Lewy. He wasn’t welcomed, but he’s here and (at the risk of sounding like Scarlett O’Hara) as God as my witness, we’re going to continue living our life to the fullest possible despite Lewy’s unwelcomed arrival.

Next week we’re going to the beach for a week in a big house with all our kids and grandkids. Part of it will be exhausting, but part of it will be glorious. I’m going for the glorious part. We’ll have to pack his walker and wheel chair. I’ll do all the packing and driving and I’ll have to sleep on an air mattress on the floor of his room so I can help him find the bathroom at night. But right now, I feel so blessed. I get to spend a week, walking on the beach, listening to the surf, and playing with my grandchildren.

How lucky am I?

Thank you Lisa!

For more information about Lewy body disorders read our books: