Ten Rules for Happier Caregiving

Someone posted this on the Facebook Lewy Body Dementia Carers website recently. It is so apt, we just had to pass it on!

When dealing with a person living with dementia:

1. Agree, never argue
2. Divert, never reason
3. Distract, never shame
4. Reassure, never lecture
5. Reminisce, never say "remember"
6. Repeat, never say "I told you"
7. Do what they can, never say "you can't"
8. Ask, never demand
9. Encourage, never condescend
10. Reinforce, never force

And here's one from us as a bonus:

• Apologize, never defend

This is just the sort of information that's in our Responsive Dementia Care book, put into a simple list that you can post somewhere for quick reminders. (We all need these!!) Thanks to the Facebook poster and to her source, Cerescan.com/conditions/Alzheimers. BTW, I've been monitoring the Lewy Body Dementia Carers page for some time now and it is a very worthwhile resource. If you haven't joined yet, consider doing so right away! As for Cerescan, they are apparently an independent diagnosing company that sounds interesting but which we know nothing about.

For more information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia
Responsive Dementia Care: Fewer Behaviors Fewer Drugs
Riding A Roller Coaster with Lewy Body Dementia: A Manual for Staff

Helen and James Whitworth are not doctors, lawyers or social workers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.

Dealing with Agitation

My husband, Jerry, had to have surgery…and the surgeon said he’d need more than a mild anesthesia. I was naturally worried, but the surgery wasn’t optional; Jerry was in pain. Naturally, I was overjoyed when he awoke after the surgery acting happy and “normal.” But then he started to be very agitated and angry…and he couldn’t urinate. I called the doctor who had me bring him in. They inserted a catheter and now Jerry is really mad at me. He doesn’t remember the surgery, or not being able to urinate. He thinks I’m doing this to him and keeps trying to pull the catheter out. What do I do? Was it the stronger anesthesia after all? Will this be permanent? 

Marie, LBD support group member

Was it the anesthesia? There are no sure answers here, but it sounds like he weathered that well. But then he started having physical problems. With only a limited amount of reserves, some of Jerry’s internal army of protectors were pulled off the task of controlling the Lewy bodies and put to work dealing with emergency issues. Even after the doctor fixed that with a catheter, he continued to be agitated because of this foreign, likely uncomfortable and  definitely unwanted thing in his body.

Will this be what Jerry and Marie can expect from now on? Again, that’s hard to tell, but hopefully, when his body begins to function better, his mind will too, especially once the catheter is removed. The goal is always to make a person living with dementia (PlwD) as comfortable as possible. The more comfort, the less agitation and fewer dementia-related symptoms in general.

What can Marie do?

• Avoid arguing, explaining, defending or denying. That’s the cardinal rule when dealing with people who can’t reason. What Jerry believes is what he believes and Marie can’t change that. Instead, she can accept, speak to the feelings and apologize. When Jerry accuses Marie, she might say, “Oh, honey, I am so sorry. That must be very uncomfortable.”

• Use touch. Marie can give Jerry a hug or a kiss--or both, hold his hand, or give him a massage. All of these have a very calming effect. Touch causes the brain to release feel-good hormones like serotonin, and both Jerry and Marie will feel better.

• Use temporary help from drugs. Marie can contact Jerry’s doctor and ask about a temporary regimen of a mild antipsychotic such as pimavanersin (Nuplazid), clozapine (Clozaril) or quetiapine (Seroquel). The first of these is fairly new but has had excellent reviews. The second is a mild antipsychotic often tolerated by PlwD, but is at risk for causing liver damage in a small number of people, thus requiring regular blood tests. While the third has been the drug of choice for dealing with agitated dementia patients for many neurologists for years, a few people with LBD don't tolerate it well and so it must be monitored carefully. We don’t advocate for drugs as a general rule, but there are times when they are appropriate, such as helping a PlwD over episodes like this.

• Make someone else the “bad guy.” Marie can ask Jerry’s doctor to become the “bad guy” and tell Jerry he has to keep the catheter in. Jerry may listen to the doctor when he won’t to Marie. He’d probably respond better to a male than a female, and he’d probably respond better to someone he knows, like his primary care physician than his surgeon, whom he may not recognize. A male family member, a grown son, for instance, can sometimes be helpful here. Or even a daughter who has been able to reach her father when no one else can. Call in the reserves!

• Take care of the caregiver. Asking for help is as much a part of good caregiving as knowing how to calm a loved one. If Jerry won’t quit trying to pull out the catheter or becomes so belligerent that he becomes dangerous, Marie needs to call 911. We want a primary care physician who knows what he/she doesn't know, and knows when to refer. It is the same with caregiving. As a good caregiver, Marie needs to be able to recognize when she is no longer able to keep Jerry, or herself, safe and call for help. Admitting that you need help can sometimes be very painful, but it can't be emphasized enough how important it is. Make it sooner rather than later!

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

Helen and James Whitworth are not doctors. As informed caregivers, they share the information here foreducational purposes only. It should never be used instead of a physician's advice.

Transitioning Jobs

You’ve made the decision to place your loved one in residential care. You know it’s time. You did the research and you know you’ve chosen the best place you can afford. You made the move, painful as it was, and now, your loved one and you have different homes. For many of you this will be the first time in decades that this is so. Others, such as adult children, may have committed to caring for a loved one to the end. For most caregivers, no matter what the relationship, the transition from full care to sharing the load with residential staff can be traumatic.

You may feel loss, as though you had lost a job…a job you may not have wanted in the first place, but still, one that has taken most of your attention, energy and time for a long time. And as you go from being overburdened with too many tasks to surprisingly long periods of free time, you may feel lost and not know what to do with it all. You may go from feeling needed to feeling left out of the loop. You may feel guilty, as though you reneged on a job you committed to do. All of this is very normal.

You may know, intellectually that your job isn’t done. Last week’s blog was all how your loved one still needs you to provide emotional and social care, coordination of services, and general overseeing. However, it may take a while to “get” this emotionally. As with any loss, you may go through phases of feeling guilt, anger and depression before you get to a place of acceptance where you can pick up and move on, in this new situation. Give yourself permission to feel these. Trying to stifle them simply makes them last longer.

Guilt can often make a caregiver super critical of the way the staff cares for their loved one. The underlying feeling (often, unrecognized, of course) is that if I can’t do anything personally, I can at least try to control how others are doing it. This is seldom helpful. While it is true that no one is going to do the physical care like you did, most care staff do a pretty good job. Naturally, if there really is a problem, you should to address it. But pick your battles! Don’t criticize unless there’s a real need. They may not do it just your way, but if it works, accept it. Instead, look for things to like, and compliment, compliment, compliment. It really will improve your loved one’s care!

Then there’s the depression…As you caregiving job changes, your whole feeling about yourself may change. You have been so invested in caregiving for so long that that’s how you defined yourself. Now, you ask, “Who am I?” Yes, you are still a caregiver, but even that has changed so much you really don’t know who you are anymore. Now is the time to think back to what made you happy “bc”…before caregiver. One spouse had always been good at “fixing things.” His daughter got him involved with Habitat for Humanity. Now the family has to make an appointment to see him, he is so involved!

Donna commented, “I just put my husband in memory care and now, I’m lost. I don’t know what to do, or even what I should be doing. I don’t know what I can do for him. I don’t know what to do with all the time I seem to have now.” We talked about how her husband still needs her, about the supportive care she still needed to provide. But then, I added, “Now is the time to start some of that self-care you haven’t had time or energy for in the past.” It turned out Donna liked to travel but of course, hadn’t been able to do for years. She has children in the area who are willing to stand in for her in the memory care center so that she can be gone for several weeks. She’s getting excited about planning her trip, “I know I’ll miss my husband, but the kids are there for him and they will keep me in the loop.”

You may not want to do something as involved as Habitat for Humanity or as drastic as a long trip, but this is still the time to do something just for you. Do you have hobby you miss? Friends you haven’t connected with for a long time, or only minimally? A book you’d like to read, if only you could find an uninterrupted hour? Or even a full night’s sleep? None of this is selfish…it will improve your physical and emotional health and make you a better caregiver. Go for it!

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

Helen and James Whitworth are not doctors. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a physician's advice.

Two Wonderful Booklets for Care Partners

This week’s blog is showing up very early so that we can tell you about a couple of wonderful booklets. This week, at the International Conference on Dementia with Lewy Bodies in Ft. Lauderdale, FL, Dr. Rosemary Dawson is making a presentation on the booklet she developed for care partners of people with dementia with Lewy bodies (DLB – also LBD). It has been evaluated by healthcare professionals including pharmacists and has been pilot tested by 20 care partners. Now, she has generously made it available to all of you. You can access and download the 34-page Care Partners’ Role in Medication for Loved Ones with Dementia with Lewy Bodies at our http://www.lbdtools.com/carepartners.html, the website of Jim and Helen Whitworth (yes, us!). This is a public access website, so please share it with others who need to know about what care partners can do:

1. Be proactive: Learn as much as you can about medications and DLB.
2. Keep good records: Share information with your loved one’s healthcare team.
3. Partner with a pharmacist: Find a pharmacist knowledgeable about DLB.
4. Collaborate with the DLB doctor: Your loved one’s doctor is the key to effective medication.
5. Questions about Prescriptions: Obtain this information about each of your LO’s prescriptions.
6. Be aware of polypharmacy: Multiple medications can pose risks to your loved one.
7. Manage medications: Be prepared to administer your LO’s medications.
8. Administer your loved one’s medications: Learn what you can do to make this activity go smoothly.
9. Be ready for problems administering medications: Sometimes people with DLB have difficulty taking medications or resist doing so.
10. Two variations: Here is what you can do when your LO can still perform some medication-related tasks and when your loved one is not living at home.
11. Explore non-pharmacological approaches: Not all DLB symptoms require medication.
12. Be prepared for ERs and hospitals: Standard protocols in ERs and hospitals can pose risks to your LO.

Dr. Dawwon is also making a presentation at the same International Conference on Dementia with Lewy Bodies on the booklet she developed with Pat Snyder (author of Treasures in the Darkness) and Jeff Maruna for care partners of spouses with Lewy body dementia. The authors have made this booklet available for free as well. You can access and download the 122-page Being an Engaged Care Partner: A Guide for Spouses of People with Lewy Body Dementia at the same webpage as above: http://www.lbdtools.com/carepartners.html. Again, feel free to share it with others who need to know about what spouses ( anyone else, for that matter!) can do to be engaged care partners:

1. What it means to be an engaged care partner
2. Preparing yourself to be an engaged care partner
3. Creating an LBD portfolio
4. Finding an LBD specialist
5. Developing successful relationships with the LBD specialist
6. Before, during, and after visits to the LBD specialist
7. Before, during, and after trips to the emergency room
8. Before, during, and after hospitalizations
9. Handling problems and conflicts

This Guide has been reviewed by content experts, and it is in its final draft form. It is being evaluated by healthcare professionals and care partners between now and February 15, 2016. The authors ask that if you read all or part of the Guide, please complete the survey that is described in the Guide.

Jim and I have read both of these booklets and we believe that they are well worth your time…and that once you’ve read them, you will keep each of them close by for a much referred to reference. Do download these and use them.

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

Helen and James Whitworth are not doctors. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a physician's advice.

Dealing with Doctors

A caregiver's life includes many visits to a variety of doctors. There's the primary of course, then there are all the specialists. In the past, we have discussed how to choose a doctor. (The most important thing is to choose one who listens to YOU, the person who is directly involved in your loved one's care!) This blog is about how to deal with the doctor you've chosen.

Getting an appointment. What do you do if you feel your loved one needs to see a doctor sooner than an offered appointment date? You can always go into the hospital ER, but that isn't necessarily a good choice for someone with LBD. You really need someone who is familiar with your loved one's unique responses to drugs and other issues.

Barry started waking up and staying awake most of the night and then sleeping a lot during the day. Darla called his PCP but the earliest appointment was in two weeks. I asked to speak to a nurse who told her nothing could be done until the doctor saw him. Darla didn't accept this. She was polite but voiced her concern about having to wait so long. "I'll see what I can do and call you back," the nurse finally said. She called back in an hour with an appointment in two days.

Caregivers have to step up and make themselves heard. You will be surprised to find that usually, you WILL get results.

Preparation. Your visit will be better if you come prepared. What do you want to ask? What are the specific symptoms and behaviors? This is where your daily journal comes in. This doesn't need to be a lengthy thing. In fact, you can use a calendar to jot down pertinent information in a few words, along with a time of day.

Darla had been using her calendar to record when Barry got up and when he when he went back to bed (as best she could remember in the morning), and the times he napped during the day. This record, along with a list of the drugs he was taking and their times provided his doctor with the information he needed to adjust Barry's medications so that his sleep cycles were better regulated. 

Getting the doctor's attention. Doctors are busy, with little time between appointments. Keeping a daily journal is great for helping the caregiver to collect information, but it needs to be boiled down into a more easy-to-read format for the doctor. Darla's calendar list of sleep behavior worked better than detailed journal entries, a long email or a drawn out verbal narrative would have. Barry's doctor asks caregivers to use a 3x5 card to write out their chief complaint, with as few words as possible, while still being clear about what the problem is.

Darla's card read, "Barry has started waking up and staying awake most of the night. Even though he sleeps a lot during the day, he doesn't feel rested." 

These two short sentences gave the doctor a jump start towards knowing exactly what issue was bothering Darla and Barry most.

Working with other specialists. Don't expect your loved one's internist, podiatrist, cardiologist, or sleep specialist, etc. to know about Lewy's unique symptoms, even those related to their specialties. They may, but don't expect it. A doctor will make the best diagnosis they can and then move on to treat that issue. At that point, they often stop looking for clues that might connect it with another disorder.

Prior to seeing a dementia specialist, Barry saw a sleep specialist for his disrupted sleep cycle. The specialist diagnosed sleep apnea, based on Barry's thrashing of limbs while asleep. He prescribed a mask for breathing assistance. Barry was unable to understand how the unfamiliar mask could help him sleep and refused to leave it on.

While sleep apnea can occur with any dementia, REM Sleep Behavior Disorder (RBD or Active Dreams), is a unique symptom of LBD. A Lewy-savvy doctor would have considered active dreams first. Not only is RBD more likely, its treatment will be easier for Barry to accept.

Drug sensitivity. Don't expect any doctor not specializing in dementia to know about Lewy's drug sensitivity. Or they may know, but need a reminder. Always mention your concern about  Lewy's drug sensitivity and tell the doctor of any personal issues. They will usually respond with a safer alternative if necessary.

The sleep specialist offered to prescribe a sleep aid for Barry when he wasn't able to wear the sleep apnea mask. Darla reminded him of Barry's LBD and voiced her concern about sensitivity, adding that he had reacted poorly to Haldol in the past. "This isn't nearly as strong as Haldol," the doctor said, "but let's try melatonin instead. I've read that LBD patients can tolerate it." 

For the LBD caregiver, doctors visits are a cooperative experience. You know your loved one best, while the doctor has valuable specialized training. Speak up, voice your opinion and ask questions. If a doctor asks your opinion about various treatments, consider this a sign of good doctoring, rather than a lack of knowledge. Be willing to share honest impressions--and be glad you have a doctor who includes you in the treatment team. Your loved one is likely getting the best possible treatment!

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

Helen and James Whitworth are not doctors. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a physician's advice.

The LBD Caregiver's WALK

We recently heard a motivational speaker talk about how we should "Walk, not Run" on our journey through life. She talked about taking time to pay attention to what's going on around us, to relate to nature and to people, instead of whizzing past at 50, 60, 70 miles an hour. We are so focused on the tasks and what we need to do next, we miss what's happening right now. Then she said that WALK can be an anagram for how to live travel our life's journey:

W is for witnessing, that is, going slow enough so that we can actually see what's going on in our lives.

A for accepting what is happening on our journey. We don't have to like it, but we do need to accept it to be able to move on.

L is for loving ourselves and those around us. For traveling with a generous giving, outpouring love.

K is for knowledge that we gather along the way, knowledge that helps us learn to live happier, more fulfilled lives.

As I listened, I thought of how this pertained to the caregiver's journey.

No one will argue that a caregiver's job is easy, or that you ever have enough time to get it all done. But still, as any dementia caregiver knows, slowing down is part of the job. Yes, it works much better with your loved one, but it helps you to focus on the here and now as well. Take your time and enjoy every minute you can. Enjoy the kind word from your neighbor, the sunset, the tasty meal, and especially take time to enjoy being with your loved one.

WALK works for LBD caregivers too:

Witness. Every caregiver needs to be a witness, a careful observer, a sleuth. When your loved one cannot communicate well verbally, this becomes critically important. When you learn and read behavioral cues, watch out for environmental roadblocks, and generally be aware, your loved one wont' be so frustrated or agitated--and behaviors will decrease.

Acceptance. Every Lewy team has to learn and practice acceptance. You don't have to like it, but accepting that this is your journey makes it possible for you to find ways to make the journey smoother, and even enjoyable. Acceptance is seldom a done deal, by the way. It has to happen over and over, and the disorder changes, and other things change.

Love. Every caregiver needs to do their job with love. Our friend Joy commented, "I don't know how you'd do this for someone you didn't love. It's hard enough for me and I dearly love my husband." She is right. If the person you are caring for is someone you normally wouldn't like, that's all right. Mary is her mother-in-law, Carrie's caregiver. They've never been great friends and have very different values. But Mary still must find a way to LOVE her mil, to see the lovable person hidden there somewhere. If she can't she will feel resentful and angry and Carrie will pick that up. She will express her unhappiness with behavior--because that's what a person with dementia does--and Mary will feel even worse. If Mary can't find a way to love Carrie, maybe she should not be her caregiver.

Knowledge. Especially with LBD, learning everything you can about this baffling disorder makes your journey safer, and easier too. You are the buffer between medical staff who may not know about LBD's drug sensitivities. You are your loved one's advocate. You know how to provide comfort more easily. But you can't do these jobs well if you don't understand the disorder and your loved one's unique responses to it. Read, search the internet, go to support groups, learn and yes, share. Sharing is another way of learning!

And so take the time and the effort to WALK through this LBD journey. Take the time to be observant, be willing to accept, and serve with love and knowledge.

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

On Being a Caregiver to a Hospital Patient

Last week I reported that Jim was having surgery. That went fine. Then he was readmitted to the hospital on Tuesday and got out today. The stress from the surgery caused his Crohns to flare up. He's fine now...has more energy than before this surgery thing started.

We learned some lessons. I hope there won't be a next time, but if there is, I hope we can remember them.

Remember that each person is a whole body, with each issue impacting on the other. With chronic issues such as Crohns--or PD or LBD--plan ahead to limit these clashes. For instance, if Jim had increased his Crohns drugs prior to surgery, he might not have had to experience a flare-up of Crohns. For someone with a Lewy body disorder, a similar preventative measure might mean adding a small dose anti-anxiety drug a few days prior to a known period of stress, such as a move into residential care or a visit from distant relatives (see 4-3-15 blog).

When a crisis occurs, don't let the urgency blind you to the power you still have to change the situation. When Jim started hurting, we forgot all about the fact that the first thing they always do for a Crohns flare-up is "nothing"...nothing to eat or drink, that is. All we could think of was getting him to the hospital, where he'd have professional help. And so Jim sat in the ER for eight hours waiting to be seen, another two lying in an ER bed waiting to be admitted to the hospital and then a whole day afterwards with nothing to eat or drink. That was exactly what he needed but, "I could have done that at home and been a lot more comfortable," he said later. Have you had experiences like this  as a Lewy body disorder caregiver. Times when you let the crisis take over and it made things worse instead of better?

Be willing to speak up, ask questions and demand answers. Most of you have been in situations where your loved one was treated for something other than Lewy symptoms, and perhaps given drugs that were either not helpful or even harmful. Jim was admitted to the hospital with a diagnosis of "infection," instead of Crohns. Well, they look a lot alike on an x-ray and, "In the ER, the tests tell the story," a nurse told us. But patient history means a lot too, and we caregivers are the ones with that in spades! Naturally, I was making myself heard on the subject. I didn't like to see Jim getting antibiotics that he probably didn't need! Finally, after the blood tests came back negative for infection, they stopped the antibiotics. I don't know if they would have then if I hadn't made a fuss--they might have left it, "just in case." When Jim was finally given something for Crohns, he improved immediately.

Please understand that we greatly appreciate the generally wonderful care that Jim had during his stay. The staff were all very kind and helpful. I simply wanted to pass on something that we as caregivers seem to have to learn over and over...we actually know more than we think we do--but we let the fear that a crisis generates cover that up and we end up looking for help--often in places that know less than we do about our loved ones and their specific issues!

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

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:

A Caregivers’ Guide to Lewy Body Dementia

Managing Cognitive Issues in Parkinson’s & Other LewyBody Disorders

Caregiving is NOT a One-Person Job

            Blog Reader Specials: Click here to buy our books for less.

Dave and Bet were our neighbors in an RV campground. Bet was recently diagnosed with LBD and Dave is working hard at adjusting to his increasing responsibilities. “I’m not there yet, but I’m working at it,” he said with a grin. But actually, he’s already doing better than many who've been at it much longer.

One of his first steps was to ask for help. Caregiving is not a single-person task. Like many men—and sadly, fewer women, Dave recognized that right away. When Bet was diagnosed with LBD, they were full-time RVers in Yuma, AZ. He called his daughter, Lynn, and asked her to come and help. She did and together they made it to the Pacific Northwest where Dave and Bet now live—still in an RV but with a permanent address. Lynn and her family live nearby and she helps with the caregiving to give her dad a break now and then.

Dave has learned to ask for help in other ways too—as with his experience with public restrooms in last week’s blog. Asking for help is often one of the most difficult things a caregiver can do—and one of the most important. However, once the need is known, most people are eager to help. During a discussion in an online support group, a couple of women mentioned that their church groups have rallied around, doing things like bringing casseroles, doing the laundry, sitting with loved ones so the caregiver can run errands and much more.

Of course, asking for help can boomerang. Lynn often calls Dave and offers to take her mom the next day. Dave has learned to “wait and see.” If Bet isn't up to going out, the experience wouldn't be pleasant for either Bet or her daughter. Lynn understands, but if it is someone who doesn't understand the changeable character of LBD, they can be discouraged and won’t offer again. In another situation, a woman in a support group shared that a neighbor has been willing to help in an emergency but asked not to be called one again. “She couldn't stand the sadness of it all,” the woman said. This can lead to feeling guilty for asking in the first place but don’t let that happen. Instead, feel sorry for the person who sees only the negatives.

People often don’t know that help is needed, or they don’t know how to help. Or, someone will offer to help and right then you can’t think of anything specific. Or you can think of things, but you don’t know if they fit what the person would want to do. Some people solve this by keeping a list of things that would help as they come up. Things like staying with your loved one while you run errands, coming in to do the vacuuming, bringing a casserole so you won’t have to cook, or even doing the dishes. Every caregiver will have a different list, of course.

For more about asking for help, read our books, A Caregiver’s Guide to Lewy Body Dementia and Managing Cognitive Issues in Parkinson’s and Other Lewy Body Disorders, both available on our website, LBDtools.com.

For our special blog reader's price for these books, Click here.

Caregiving Choices

In the caregiver support groups that we attend, how to care for a loved one is always a topic. Pat Snyder, author of Treasures in the Darkness, has opted for home care, with adult day care and full time assistance when her husband, John, is home. The daycare gives him some social exposure and Pat some alone time. The additional caregivers make it safe for Pat to keep John in a home, which incidentally they renovated to be very, very accessible.

About the full-time caregivers, she says, “Yes, they sit a lot. But my health is in jeopardy if I try to lift him or if I am up all night when Lewy appears. And with Lewy's isolation issue, it is actually nice to have company more here at the house. They are good people. So my bit of wisdom is this: The money that was to be there for me later is being used now to keep me in good enough health to have a chance for a life after Lewy. Also John is calmer, less stressed with fewer symptoms with one-on-one care, and I am able to rest and not be constantly traumatized by Lewy's demands.” You can read more about Pat and John’s journey here.


Sue, wanted to take care of her father at home but eventually opted for residential. “We made the decision together. During a Good Time, a time of more alertness, I told him they could offer him things I couldn’t—and it was true. Mainly, I was afraid for his safety and what would happen if he fell—again. I’m glad we made the move when we did—when it was “we” and not just me, making the decision. I think it really made a difference in his acceptance of his new home. He actually seems to like it there! He doesn’t always know their names but there is something about certain ones that he seems to relate to. Maybe it is the feelings they generate. Feelings don’t disappear like memory does and the staff there really are very caring people.


Andrea is doing home care but she is exploring her options. My husband is very mobile, she says, but he’s not very steady and he can’t remember anything. I have to tell him how to sit and stand and eat and, well, everything. And he has to be watched every minute cause he does stuff like pouring milk in the sugar or worse. And his clock is all wrong. He is up much of the night and wants to sleep for hours during the day. I’m getting really tired. Maybe I should consider residential.” The group suggests that if she isn’t ready to go the whole residential route yet, maybe daycare is the answer. The added stimulation of being around more people and activities might even help him regulate his clock so that he’d sleep better.

Joy says that’s what she is doing. She is still trying to care for her husband, Bill, at home alone but she now takes him to day care a few times a week. “It does help. I feel more rested now. She has also arranged for him to get his showers there. “It was getting awfully hard for me to do and so just the shower has been a wonderful help for me—and he doesn’t fight them the way he does me,” she adds. Joy is leaning towards residential care too—maybe in the next few months. She sees the visits to day care as paving the way for this move. Bill will already know the place and some of the people.

Every caregiver has to deal with these decisions. And every situation is different. What was yours like?

Read more caregiver stories in our books, the Award Winning A Caregiver’s Guide to Lewy Body Dementia and our just released Managing Cognitive Issues in Parkinson’s and Other Lewy Body Disorders. These books and Pat Snyder’s Treasures in the Darkness are all available on www.lbdtools.com.

Do You Need More Help?

We meet wonderful, dedicated people at caregiver support groups. We always learn something. Maybe it is how to move a person easier, or where the best care for a particular ailment is in our area. But often it is that caregivers are ferociously determined to give their loved ones the best treatment possible. And that they want to do this at home. And that they prefer to do it alone. We hear of their struggles—the falls, and the difficulty getting a loved one into and out of a chair; the difficulty getting him to the doctor or for regular tests. We hear of combativeness and see the bruises. We hear the stories about the caregivers bad backs, and shoulders, and hearts and other illnesses.

Especially, we hear over and over that no caregiver wants to place their loved one in a long term care facility. NONE of those places are good enough. NONE of them will give him the care the caregiver has been giving him. NONE of them will take the time for his various needs. Or if there is one that will do all of this, they haven’t found it yet, or it is too expensive, or…. As for in-home help, caregivers worry about having a stranger in their home. Who can be trusted? Or the loved one doesn't respond well to hired caregivers--strangers who don't know his special needs and quirks.

The bottom line is that placing this person that they feel totally responsible for into someone else’s hands is terrifying. The what ifs make it an awfully difficult task—often an impossible task. What if they give him a medication he shouldn’t have? What if he needs help and they don’t respond quickly? What if they can’t understand what he wants? What if ……? The list goes on and on in their head. “No, I can’t do it,” the caregiver thinks. “I can carry on alone for a while longer.”

But can she? Over and over, the statistics show that all caregivers are highly susceptible to debilitating illnesses, illnesses that will eventually take away their ability to care for their loved one. Even worse, an elderly caregiver is 60% more likely to die than a non-caregiver of the same age. SIXTY PERCENT! Over half. Then, the loved one is likely to go into a long term care facility because there are no other choices. And it will be without the all important caregiver’s support.

We’ve come to believe that the issue is much more than that of finding adequate, caring help, or a Lewy-friendly long term care facility, or even finances. We don’t discount those problems. However, many caregivers can attest that good, trustworthy help and facilities are out there if you look for them. Finances can be a major roadblock, but assistance is there also. There has to be something more, like the emotional attachment to the job, and of course to the loved one.

There is a lot of emotion invested in caregiving. There’s that terror of handing over a loved one to someone else is one I mentioned earlier, as well as many other strong feelings that surround the wish for a loved one’s well-being.

But we believe there’s more—and it often has more to do with the caregiver than the loved one. To ask for help may seem like failing, or like letting a loved one down, or even like letting oneself down. The loved one becomes a caregiver’s most valuable, most protected possession, and the job becomes her identity. How can she give this up, or even share it?

Years ago, I lived and worked in another state and visited my elderly parents a few times a year. My mother was already in a nursing home when my stepfather became ill and had to join her. My widowed sister, who was their primary caregiver, kept this a secret from me. Later, she said she was afraid I'd try to take over her job. I couldn't understand that then. Why would I, who could only visit occasionally, want to take over a job my sister was doing so well? The caregivers in the support groups we've visited have helped me to understand. My sister had been a caregiver for years, first of her husband, then of our mother and finally, of our stepfather. What I saw then as irrational behavior was fueled by fears she probably didn't even recognize--including the fear of losing her identity as a caregiver.

For a spouse, is sharing the intimacies of caregiving like sharing a marriage? Does it feel wrong, somehow to expose her loved one’s vulnerabilities to someone else? True, she believes that no one else can do as good a job as she can. She’s probably right—as long as she can do it. But what would happen if she were wrong? What if someone else could do a better job? Then, what is she? Chopped liver?

These are just ideas thrown out to explore. Do you relate with any of them? Or do you find yourself adamantly resisting any of these suggestions? If you do, think again—that may be the one that fits when you take the time to be really honest with yourself. Future blogs will be about how to know when it is time to get help—and what kinds are available.

Find more about LBD caregiving in The Caregiver's Guide to Lewy Body Dementia available on LBDtools.com in the LBD Book Corner.

It Isn't Easy

We spent last week being mom’s helpers and so I’m still in baby mode. New mom or new caregiver, there’s a lot of similarity. When Ursula became pregnant, it was a shock…she didn’t think she could. No more than an LBD diagnosis is expected. Few couples believe this going to happen to them either. It wasn’t the way you’d planned your retirement, no more than she’d planned her future as a single mom. But like Ursula, you took a deep breath, stepped up and said, “I can do it. I know it won’t be easy, but I can do it.” And you do.

It hasn’t been easy. For Ursula and Baby Ian, it’s been like learning a new and often frustrating dance. Ursula thought that with her difficult delivery a fading memory, the worst was over. But then she found that was only the start. First they had to learn the nursing routine. Then, once he finally got the hang of nursing, he didn’t want to quit. He’d found his life’s work! Her milk wasn’t in yet and so he was hungry, Hungry, HUNGRY all the time. No matter that Mom was sore, or tired and wanted to take a shower.

Ian doesn’t understand “night.” He wakes up, like all newborns do, every few hours, day and night. Already, he’s a sociable little guy and so he doesn’t want to just eat and go to sleep. He wants to be held, talked to, sung to, enjoy and be enjoyed. That’s fine during the day, but Mom isn’t getting enough sleep and she’s becoming cranky too. “How can such a little person take up so much time?” she asks.

Does this remind you of the many trials that caregivers have? The belief that the worst is over, only to find out that your journey is just starting; the continually new challenges that sneak up on you without warning? Of trying to meet your loved one’s needs even though you feel overwhelmed. And still finding that there’s more—and that it must be done now, not later, not after you are rested, but NOW. And of course, like Ursula, who’s recovering from surgery and often in pain, you have your own health issues: bad backs, sore knees, etc. We tell her, patience, patience, patience. That’s what it takes. She knows it. You know it. But it is hard to remember that when you are sleep-deprived, hurting and not at all sure of what you are doing in this new world you’ve been thrown into with little preparation.

And so Ursula frets at Ian, “I’ve checked everything. Nothing’s wrong with you. Stop crying and go to sleep.” Or “Why are you so selfish?” or “Why are you picking on me?” She KNOWS Ian is only doing his job of surviving, but especially when she’s at her wits end, it is easy to forget, and to personalize his behavior. She wants him to understand HER problems. And of course, he doesn’t. He only knows what Ian wants.

Mom and baby are the only relationship Ursula and Ian have had. If this new mom can forget that a baby can’t relate except as a baby, imagine how much more difficult it is for the caregiver of a spouse or parent. They are dealing with someone who once did understand and could relate adult to adult, someone who once was aware of more than their own needs. Caregivers use the mantra, “It’s the disease, it’s not my loved one.” And that is so apt.

Ursula is doing a great job. True, there are times when she voices frustration. But always, she is gentle with Ian and caring and with great effort, patient. Never a patient person, this last has not been easy. Likely, you can relate with this too….after all, few of you asked for your job or trained for it either. It just showed up. But like Ursula, you CARE. You love this person for whom you are responsible and there is no doubt that you want to provide the best care that you can. And that’s what it is all about, no matter what the age of your loved one.