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:

Friday, February 20, 2015

Caregiving, The Next Level

Mary’s mom is going into an Assisted Living Center next week. Mary did her homework and finally settled on the best possible place within her budget. Her days of heavy lifting and sleepless nights are over. “I love Mom,” Mary told her sister, “But I just don’t have the strength to do everything that Mom needs anymore.” Yes, Mary knows it is time, and the best thing for Mom too. But it makes Mary feel empty. Lost. Useless. Of course, she will visit and keep her mom company. And Mary knows that the paperwork and financial responsibilities remain. But Mary feels as though she is losing a very demanding job—and one that all in all, she did well. She will no longer be a caregiver.

Wrong! Mary’s duties will change, but she still has an important, and often time consuming, caregiving job. It is common knowledge that patients in care facilities who have a family member involved do much better than those who don’t. If you have a loved one in a care facility, here are some of your many tasks:

Social director. With multiple patients, care staff often have little time for for being social. Facilities usually offer group activities, such as singing, crafts, even cooking, but one-on-one contacts are the ones that are best at keeping a person alert. That’s your job. And it can be a fun one. Once again, you get to be family, instead of caregiver and patient. Also invite friends and family to come visit. As family caregiver, your are the most important visitor, but others add variety and fun.

Observer. Come at odd times to the facility to check on care. Is s/he being moved regularly if s/he can’t move easily? Are there any unexplained red spots or bruises? (See last week's blog) Are any treatments being done properly? Is s/he being taken out for exercise, social events, etc.? Are needs (bathing, toileting, dressing, etc.) being met in a timely manner? Is s/he being helped with feeding in a way that works for him? How do the various staff interact with him/her? When you see something that isn’t working, talk to the staff. You’ll get best results if you ask assuming that they care about their patients and will work with you to fix the problem. Usually they will. If they don’t go to their boss.

Medications manager. Usually there is a facility physician who is in charge of this. But it is your job to review your loved one medications regularly and ask questions. Insist that no changes be made without consulting with you first. Be very aware that during a hospital stay, medications may be dropped. If they aren’t added back upon your loved one’s return to the facility, ask why. Be especially diligent when important staff changes happen. Your loved one’s care can get lost in the cracks.

Case manager. The facility usually has one of these too. Even so, request that they consult you about any major changes to your loved one’s care. Also, you will probably still have to make doctor’s appointments and get your loved one there. Always go with--don’t leave this to staff. You still must take care of many of the insurance documents and other legal papers too. Then there are the errands to run for things that just make your loved one’s life more pleasant—lip gloss, new underwear, a book.

Emotional supporter: This doesn't change—and it is perhaps the most important task of all. Your loved one still needs your attention, your loving words. Your are the stability of their lives, the connection between what is and what was. Make a point of touching, hugging and kissing. Yes, the staff touches a lot, but it usually, task oriented. Your job is to initiate caring oriented contact, to listen, to be a sounding board for complaints, a shoulder to cry on, and a friend to laugh with.

For more information about Lewy body disorders read our books:

Friday, February 13, 2015

Music, The Great Motivator

Most of us have seen Henry on youtube. He’s this elderly gentleman who can’t lift his head or remember anything until a nurse puts headphones connected to an iPod over his ears. Henry “wakes up” and begins moving and singing with the music. Even after the music is over, he can talk clearly and intelligently about things in his past. He says music gives him the feeling of love and romance, that it makes him feel holy.

Henry’s awakening was a part of a project that provides iPods to people in nursing homes and information to all of us about how helpful music is with people whose dementia has isolated them inside their heads. The documentary this group did is worth watching. You can learn more about Alive Inside and see Henry in the trailer here, The full-length documentary is on Netflix.

Most caregivers are well aware that as thinking abilities fail, emotions remain. Music serves as a connection between emotions and memories and enhanced thinking until very late in the dementia journey. Personalized music can be more effective than any medication in helping a person reconnect with their vital essence—to come alive. Yet it is extremely inexpensive and easy to use.

Our May 2, 2013, blog goes into detail about how music wakes up memories and increases alertness. It offers several suggestions about how to add music to your loved one’s routine. Here are some ways that music can increase awareness and quality of life (
  • Pairing music with everyday activities helps people develop a rhythm that aids in the recall of the memory of this activity, improving cognitive ability over time.
  • Singing sessions engage more than just the left, more creative, side of the brain. Listening to the music activates the right, more logical, side of the brain as well, so that thinking abilities improve—for a while at least.
  • The rhythms of music can improve physical abilities and increase energy. People who can barely move become able to dance and move to the rhythm of the music. Depression often decreases and motivation increases.
  • Being able to sing and/or dance with loved ones adds a closeness that is often lacking as dementia takes away the ability to share emotions. Dancing can lead to hugs and kisses and even more memories as well as feelings of security.
  • Music can shift mood, manage stress and stimulate positive interactions because it requires little or no thinking, it doesn’t need cognitive functioning. It can calm or energize, depending on the song.

The first step for introducing music into your loved one’s life is to develop a playlist of favorite songs. Here are some suggestions:
  • Start with music from your loved one’s teenage years, through about age 25.
  • Choose the type of songs that have most importance to your loved one. For example, if church was an important part of life, add some hymns to the mix. Was opera important or not? Westerns? Mix in some instrumentals but make sure many of the songs have words.
  • Make sure the mix includes a variety of stimulating, laidback, romantic, sad and happy music. Both may trigger emotional connections.
  • Include are some “sing along” classics, that your loved one can join in with.
  • Put the music in an iPod or mp3 player with earphones. The big over the ear type of earphones is easier for the person with dementia to use than ear plugs. Use the wired type; Bluetooth connections might be too difficult to maintain. A simple music player that turns on and off with one switch is also an option for someone living at home or in their own room, where invading other people's hearing space isn't an issue.

Then the fun begins. Your loved one may respond positively soon after you put the earphones on, but if that doesn’t happen, don’t give up. It can take several sessions before a visible reaction occurs.

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

Friday, February 6, 2015

Pressure Sores

As your loved one’s physical condition deteriorates, he will spend more and more time in a wheelchair and in bed--and become more at risk for pressure sores. These are sores that develop when the blood supply is cut off to an area for more than two or three hours. That becomes an issue when a person cannot move easily without help. The areas of highest pressure are: The hip, lower back or buttocks, shoulder blades and spine, back and sides of head, rim of the ears, heels, ankles and skin behind the knees.

Pressure sores (bedsores) are more common in a care facility than at home. That’s because a) a person is usually less mobile by then, and b) they aren’t getting the one-on-one attention they got at home. However, they CAN happen at home, especially if a caregiver doesn't know to be alert for early signs. Even with the best of care, pressure sores are a risk for people with Lewy body disorders—or any debilitating illness.

Prevention. The first line of defense.

The surfaces. The least expensive, and possibly the best mattress for someone with limited movement is a mattress made of medical quality high-density foam. You can also cover an existing mattress with a pad of the same quality. An egg-crate foam pad does not provide adequate protection, even if it is quite thick. Other mattresses and pads are those made with gel foam, alternating air and sheepskin.  Click here for more information about all of these.

If your loved one is in a wheelchair, there needs to be a pad of similar quality there too. Click here for a good article on seat cushions. Don't forget the backs of the legs if your loved one sits in the chair with the feet raised.

Movement.  No matter what kind of surface protection you use, your loved one’s position needs to change every two to three hours. As he becomes less able to do that, it becomes your task, or if he is in a care facility, the care staff’s task. Make sure it happens. Once a pressure sore starts, they are hard to cure. This doesn't necessarily mean a major shift each time, as from one side to the other, or from side to back. It does mean that the areas of the body experiencing the most pressure need to change.

Massage. Massaging the “high pressure areas” at least once a day helps to maintain good circulation and tougher skin. More often is beneficial. Click here to go to a website that offers suggestions about the types of healing oils to use with the massage.

Nutrition. The skin needs adequate proteins and fluids to stay tough. Add healthy oils (fish or fish-oil supplements, olive oil, avocados, flax seeds) for elasticity and strength.

Observation. Even with the best treatment and the most careful prevention, pressure sores can happen. Make a point of actually looking at all the major pressure points at least once a week, and daily if possible.

“I cared for my dad for a couple of years. Checking for pressure sores was a part of our bathing process. When Dad entered an assisted care facility and bathing was not longer my job, it felt intrusive for me to look. I assumed that the staff was now checking—but apparently they weren’t. Dad developed an awful bedsore on his tailbone. It became infected and I believe that it led to his death.” Janice

Yes, the care staff should, and usually do, check. However, this are too serious to leave it to them entirely. (Remember, they have many other patients to care for, and things get missed occasionally in the best of facilities.) It may feel intrusive, both with a patient and with the staff, but a caregiver needs to be proactive. You need to look. If the skin is in good condition, say so—tell the staff how pleased you are. Let them know you do check! If it isn’t, ask that something be done immediately. Then follow up.


Early sores. A pressure sore starts out as a mild redness that doesn’t go away. The skin may be tender, and warm or cool, compared to the surrounding skin. If you catch it then, it is easy to fix. Avoid putting any pressure on that spot until it returns to normal skin color. Additional massages with healing oils will speed the time. If the sores reappear, talk to the doctor or a physical therapist about ways to avoid this.

With broken skin: Once the skin is broken, you need to contact the doctor for treatment immediately. This will include applying a dressing that will keep the area clean and moist. Of course, there should be minimal pressure to the area until healed. Medication will depend what kind of infection, if any, is present. With deep sores, surgery may be required to clean out the dead tissue.

As you can see, pressure sores are no little thing when they are not found and dealt with quickly. A proactive caregiver can make sure that they are found early and treated appropriately.

Click here for more about pressure sores and their care.

For information about Lewy body disorders read our books: