“Caregiving sneaked up on me,” Janet told her group. “LBD stole our relationship as best friends, lovers, and co-decision makers and left us with a caregiver-patient relationship neither of us wanted. He feels totally dependent on me and I feel overwhelmed and overworked. Don’t get me wrong. I still love Mark and want to care for him. But, if it weren’t for all of you, I’d feel so alone.”
Many LBD caregivers are in Janet’s shoes. Some don’t have a support group and so for them, it’s even worse. Caregiver stress is a very real part of the LBD picture. And remember, your loved ones reflect all of your feelings and so if you are stressed, they are too. Caregiver care is NOT a luxury. It is as much a part of your loved one’s treatment as the dementia drugs and good behavior management. Here are some steps to decrease your stress:
1.Early in your LBD journey, institute a “day out” for yourself. You may not feel the need for it yet, but the goal now is to get your loved one used to you going off for a few hours—and coming back refreshed. If you make this a part of your regular routine now, it will be easier for your loved one to accept later, when they are more dependent.
2. Find a support group. Any caregivers support group is helpful, but a dementia caregiver’s group is better and one specifically for LBD is best. You need a place to vent, to ask questions and find answers, and to know that you aren’t alone. Find an online LBD group too. They especially valuable if you don’t have a local LBD group and are great for 3am venting. Research has shown that caregivers who have a support group can keep their loved ones at home longer. I've listed some links to support groups at the end of this blog.
3. As your caregiving job gets more difficult, consider home health care. Again, this is NOT a luxury. It will extend the time you can keep your loved one at home and it is much less expensive than residential care. Not only does it take some of the physical load off your shoulders, it also gives you time to get out of the house and do something for yourself.
4. Hire a "housekeeper." If your loved one is still able to care for himself but you are hesitant to leave him alone, consider hiring someone to do “housekeeping” for a few hours a week (or oftener) with the understanding that part of their job is to keep your loved one safe. This may be easier for your loved one to accept and it still makes it possible for you to get some respite, knowing your loved one is in good care.
5. Consider adult day care. If you are working, this may be a necessity unless you can find someone to come into your home. If you aren’t, it can give you a few hours of respite a day or a week. Again, start this as early in the LBD journey as you can so that it becomes a routine. Sometimes, staff will welcome early dementia patients as “volunteers.”
6. Consider residential placement without guilt. When, even with extra help, you are feeling stressed, it is time—probably past time—for residential placement. Again, this is not just for you. Nancy put it this way, “When I finally gave in and put Ed in a residential home, we got our marriage back. When I didn’t have to spend my energy and time on physical caregiving, I could be Ed’s wife and companion again.” Maria said, “I felt so guilty about having to put Gary into an assisted living program. But after a few months, I discovered that with adequate sleep and more self-care, I was a better person—and a better caregiver. I was more caring and patient with Gary. Now I wish I’d done it sooner.”
Links for LBD Caregiver Support Groups:
Caregiver Support Group Links:
Local LBD Caregiver groups. Also check with your local Alzheimer’s Chapter. Some have LBD specific support groups. We’ve been to two (Irvine, CA and Seattle, WA) and found them very Lewy-savvy and supportive.
Online groups:
LBDA Forums (like online support groups for anyone, divided into topics)
Caring Spouses (spouses only)
LBD Caregivers (for anyone).
Friday, July 27, 2012
Sunday, July 22, 2012
Happy Triggers
Most caregivers have learned to look for triggers that increase stress—and acting out. But do you also look for triggers that decrease stress? Like the acting-out triggers, these “happy triggers” can be very individual but there are many that work for most of our LBDers.
Music is one of the more general happy triggers. It works wonders with many people. Usually, soft elevator or easy-listening music is best, but consider individual tastes too. Or maybe it is just one tune that brings back feelings about happy times. Or a specific kind of music. Beth told of how her mother had collected music boxes. When she visited her mother, she’d play them. It not only calmed her mother, it pleased the other residents too!
Touch is another fairly general happy trigger, especially when used with a gentle tone of voice. Remember to move slowly and touch softly. Harold paced when he became agitated. His wife learned to go up to him and, putting her hand gently on his arm, talk to him softly. “It didn’t really matter what I said,” she told her group. Just the words and the touch made him less agitated. And then I could steer him over to his chair and he’d sit down.”
A third are family photos. Whenever Judy placed an album filled with family pictures in her father’s hands, he would calm down. He loved to look at the photos even though he couldn’t identify all of the faces anymore.
Tools of a past trade or hobby often work well as happy triggers. Lydia had been a librarian. Her “happy trigger was a book. Give her one and she’d smell it and hug it to her chest and smile. For Janice, the mother of five, it was a baby doll. Some feel that using dolls with dementia patients is demeaning and “infantizing.” Our own take on this is that if it the doll has a calming effect on your loved one, it is a shame not to use it.
The further along the LBD journey your loved one is, the more they rely on feelings rather than words and concepts. And so a happy trigger can be anything that generates positive feelings, feelings of adequacy and even accomplishment, of safety and security, of love and affection, of comfort and fun. Don’t forget humor. Not being able to express humor anymore does not mean that it isn’t appreciated. And so, to find your loved one’s individual “happy triggers” think about what has made them happy in the past. They are still the same person, after all.
Of course, you must take into consideration LBD’s sensitivities. Jerry once loved loud music—the faster and louder the better, but now hearing it makes him agitated. Myron once loved to go to a crowded mall and people watch. Now crowds overwhelm him. You also have to take into consideration their lost executive skills. Ella loved TV mystery shows. Now she can’t tell what’s real and what’s not and she becomes frightened because she believes she is in danger.
Parkinson’s families learn to adapt for their loved one’s mobility issues. Leon walked miles each day; now his wife pushes him around the block in his wheelchair when he gets agitated. In fact that’s the name of the game for all LBD families. What other kind of music might be a “happy trigger” for Jerry? Where can Myron indulge in people watching when he isn’t in a crowed mall? What other kinds of TV will entertain and calm Ella? It’s all a matter of trial and error.
But once you’ve found your loved one’s happy triggers, use them. Of course, you won’t need them as much if you’ve also found those things that trigger the acting-out and do your best to avoid them. Use the happy triggers when the acting-out occurs anyway and you’ll both be happier. In fact use the happy triggers often, with or without acting-out. Why not? We all like being happy!
Music is one of the more general happy triggers. It works wonders with many people. Usually, soft elevator or easy-listening music is best, but consider individual tastes too. Or maybe it is just one tune that brings back feelings about happy times. Or a specific kind of music. Beth told of how her mother had collected music boxes. When she visited her mother, she’d play them. It not only calmed her mother, it pleased the other residents too!
Touch is another fairly general happy trigger, especially when used with a gentle tone of voice. Remember to move slowly and touch softly. Harold paced when he became agitated. His wife learned to go up to him and, putting her hand gently on his arm, talk to him softly. “It didn’t really matter what I said,” she told her group. Just the words and the touch made him less agitated. And then I could steer him over to his chair and he’d sit down.”
A third are family photos. Whenever Judy placed an album filled with family pictures in her father’s hands, he would calm down. He loved to look at the photos even though he couldn’t identify all of the faces anymore.
Tools of a past trade or hobby often work well as happy triggers. Lydia had been a librarian. Her “happy trigger was a book. Give her one and she’d smell it and hug it to her chest and smile. For Janice, the mother of five, it was a baby doll. Some feel that using dolls with dementia patients is demeaning and “infantizing.” Our own take on this is that if it the doll has a calming effect on your loved one, it is a shame not to use it.
The further along the LBD journey your loved one is, the more they rely on feelings rather than words and concepts. And so a happy trigger can be anything that generates positive feelings, feelings of adequacy and even accomplishment, of safety and security, of love and affection, of comfort and fun. Don’t forget humor. Not being able to express humor anymore does not mean that it isn’t appreciated. And so, to find your loved one’s individual “happy triggers” think about what has made them happy in the past. They are still the same person, after all.
Of course, you must take into consideration LBD’s sensitivities. Jerry once loved loud music—the faster and louder the better, but now hearing it makes him agitated. Myron once loved to go to a crowded mall and people watch. Now crowds overwhelm him. You also have to take into consideration their lost executive skills. Ella loved TV mystery shows. Now she can’t tell what’s real and what’s not and she becomes frightened because she believes she is in danger.
Parkinson’s families learn to adapt for their loved one’s mobility issues. Leon walked miles each day; now his wife pushes him around the block in his wheelchair when he gets agitated. In fact that’s the name of the game for all LBD families. What other kind of music might be a “happy trigger” for Jerry? Where can Myron indulge in people watching when he isn’t in a crowed mall? What other kinds of TV will entertain and calm Ella? It’s all a matter of trial and error.
But once you’ve found your loved one’s happy triggers, use them. Of course, you won’t need them as much if you’ve also found those things that trigger the acting-out and do your best to avoid them. Use the happy triggers when the acting-out occurs anyway and you’ll both be happier. In fact use the happy triggers often, with or without acting-out. Why not? We all like being happy!
Saturday, July 14, 2012
Taming LBD
No one wants to have LBD or wants it for their loved one. The normal, even healthy, first response to such a diagnosis is denial. It protects the mind and provides some time to adjust. However, when it lasts past this adjustment period, it becomes destructive. Whatever you are denying—in this case, the LBD—is like a terrifying animal that has invaded your home.
You feel compelled to spend all your energy and resources hiding from it and protecting yourself from this unwelcome invasion. But this allows LBD to do just what you fear. It takes over your life, limiting it much more than need be. When denial is effective, it blocks you from doing anything to deal with the problem—there isn’t any problem after all. When it slips—and it always does, you feel the pain of what you perceive as an unbearable truth.
Release the denial and you’ll find that the truth IS bearable—not what you wanted, but definitely bearable. When you accept that Lewy is a part of the family, you release all the energy that had been used to hide from it. Now you can use that energy to tame the frightening, ferocious animal you perceived Lewy to be. No, it will never be the sweet little pet you wanted, but it can be tamed.
The taming starts with rephrasing. It’s not dementia. It’s a disorder. This is true and it sounds less scary. Yes, dementia is part of the disorder, but it is part of many disorders. It is progressive rather than degenerative. Both are true, but progressive reminds you that LBD’s progress is very slow and that your efforts can slow it down even more. It is treatable, rather than incurable. True there is no cure, but there are many ways to treat, or tame it; to slow it down, to make it less difficult. Keep on the lookout for new words to rephrase. Each one helps.
Using humor helps too. Choose laughter instead of embarrassment. When you or your loved one forgets or can’t do something that used to be easy to do, joke about it. Laugh with your loved one, not at them, of course. Like denial, embarrassment is stressful and holds you back. Humor releases tension for both of you and allows you to move on. It may not be easy to laugh or joke about something that feels so frightening and serious at first, but it becomes easier as you make humor a part of your “self-treatment.”
Talk about it. The more openly you can talk about the disorder, the tamer it becomes. When it is simply a fact of life that you can work around, it stops being a scary monster taking up so much of your emotional space. When you share what’s going on with you with others, you will discover that they are more interested than rejecting and more supportive than pitying.
Finally, become a seeker instead of an avoider. Make it your job to learn as much as you can about LBD. Find a support group; use the internet to research; ask questions. Again, the more energy you put into knowing and understanding this disorder that has invaded your family, the more you can tame it and maintain your quality of life.
You feel compelled to spend all your energy and resources hiding from it and protecting yourself from this unwelcome invasion. But this allows LBD to do just what you fear. It takes over your life, limiting it much more than need be. When denial is effective, it blocks you from doing anything to deal with the problem—there isn’t any problem after all. When it slips—and it always does, you feel the pain of what you perceive as an unbearable truth.
Release the denial and you’ll find that the truth IS bearable—not what you wanted, but definitely bearable. When you accept that Lewy is a part of the family, you release all the energy that had been used to hide from it. Now you can use that energy to tame the frightening, ferocious animal you perceived Lewy to be. No, it will never be the sweet little pet you wanted, but it can be tamed.
The taming starts with rephrasing. It’s not dementia. It’s a disorder. This is true and it sounds less scary. Yes, dementia is part of the disorder, but it is part of many disorders. It is progressive rather than degenerative. Both are true, but progressive reminds you that LBD’s progress is very slow and that your efforts can slow it down even more. It is treatable, rather than incurable. True there is no cure, but there are many ways to treat, or tame it; to slow it down, to make it less difficult. Keep on the lookout for new words to rephrase. Each one helps.
Using humor helps too. Choose laughter instead of embarrassment. When you or your loved one forgets or can’t do something that used to be easy to do, joke about it. Laugh with your loved one, not at them, of course. Like denial, embarrassment is stressful and holds you back. Humor releases tension for both of you and allows you to move on. It may not be easy to laugh or joke about something that feels so frightening and serious at first, but it becomes easier as you make humor a part of your “self-treatment.”
Talk about it. The more openly you can talk about the disorder, the tamer it becomes. When it is simply a fact of life that you can work around, it stops being a scary monster taking up so much of your emotional space. When you share what’s going on with you with others, you will discover that they are more interested than rejecting and more supportive than pitying.
Finally, become a seeker instead of an avoider. Make it your job to learn as much as you can about LBD. Find a support group; use the internet to research; ask questions. Again, the more energy you put into knowing and understanding this disorder that has invaded your family, the more you can tame it and maintain your quality of life.
Saturday, July 7, 2012
Caregiver Friendly Award and Speaking in Washington
We are in the beautiful Pacific Northwest and yesterday it didn’t rain. This was the first in about a week and my body, which responds to the rain with Arthritic aches and pains, reveled in the warmth. Hopefully we’ll see more sun today. What a change from our determined avoidance of the sun in Arizona! In the meantime, things are happening for us on the LBD front:
First, we are honored to announce that our book won a 2012 Caregiver Friendly award from Today’s Caregiver magazine and website. Our publisher put an ad in the magazine but it doesn’t mention the award yet because it won’t be presented until later this month in Florida. Sadly, we can’t be there because we’ll be doing presentations in Washington State. All the events below are free and we'll be autographing books. If you've already bought one, bring it and we'll be glad to write in it. If not, we can sell you one. If you live in the area, do come out and meet us.
July 24 at 1pm, at the Carl Gipson Senior Center, 3025 Lombard Avenue, Everett WA. Riding a Rollercoaster with Lewy Body Dementia, an hour overview. Call 425-257-8780 to reserve a seat.
July 25, at 6:30pm at The Terraces at Skyline- Rainer Room, 715 9th Avenue Seattle, WA. Five Things You Really Need to Know about Lewy Body Dementia, a half-hour introduction. Dr. James Leverenz, a nationally known dementia specialist, will also speak and there will be a question and answer forum afterward. This event is sponsored by the Alzheimer’s Association. RSVP Requested to Anita Souza, anita.souza@alz.org or 206.529.3868
August 13, at 2pm at St. Luke’s Rehabilitation Center, 711 South Cowley Street Spokane, WA. We will present Lewy Body Dementia, Parkinson’s “Sleeping Bear” for the Parkinson’s Resource Center of Spokane’s monthly Telehealth broadcast. You can attend in Spokane at the above address or listen to the live broadcast at over a hundred locations in five states. https://www.inhs.info/sub.aspx?id=2272
We will be in the Portland Oregon area for a week in September and we’d love to be able to present there as well. If you know of a care facility or organization that might like to have us, do suggest that they contact us at 480-981-1117.
First, we are honored to announce that our book won a 2012 Caregiver Friendly award from Today’s Caregiver magazine and website. Our publisher put an ad in the magazine but it doesn’t mention the award yet because it won’t be presented until later this month in Florida. Sadly, we can’t be there because we’ll be doing presentations in Washington State. All the events below are free and we'll be autographing books. If you've already bought one, bring it and we'll be glad to write in it. If not, we can sell you one. If you live in the area, do come out and meet us.
July 24 at 1pm, at the Carl Gipson Senior Center, 3025 Lombard Avenue, Everett WA. Riding a Rollercoaster with Lewy Body Dementia, an hour overview. Call 425-257-8780 to reserve a seat.
July 25, at 6:30pm at The Terraces at Skyline- Rainer Room, 715 9th Avenue Seattle, WA. Five Things You Really Need to Know about Lewy Body Dementia, a half-hour introduction. Dr. James Leverenz, a nationally known dementia specialist, will also speak and there will be a question and answer forum afterward. This event is sponsored by the Alzheimer’s Association. RSVP Requested to Anita Souza, anita.souza@alz.org or 206.529.3868
August 13, at 2pm at St. Luke’s Rehabilitation Center, 711 South Cowley Street Spokane, WA. We will present Lewy Body Dementia, Parkinson’s “Sleeping Bear” for the Parkinson’s Resource Center of Spokane’s monthly Telehealth broadcast. You can attend in Spokane at the above address or listen to the live broadcast at over a hundred locations in five states. https://www.inhs.info/sub.aspx?id=2272
We will be in the Portland Oregon area for a week in September and we’d love to be able to present there as well. If you know of a care facility or organization that might like to have us, do suggest that they contact us at 480-981-1117.
Sunday, July 1, 2012
The Three A's: Assessment, Adaption and Acceptance
Being continually aware of how your loved one is doing—what triggers stress, what brings peace. Noticing the little things before they get big. Keeping your doctor’s appointment. Evaluating how the medication works—or doesn’t work. Keeping track of the behavior patterns, the cognitive levels, etc., etc. That’s the assessment part. You and the doctor need to know what you are dealing with and you are the one on the front lines. You do the first assessments—and if you are smart, you write it all down. Not only is a written record valuable to your doctor, it is to you too. You are a busy person and can’t be expected to remember every little thing. Some little thing that you document may be just what you need when you are trying to figure out what triggered your loved one to act out, for instance.
And then there’s adaption, a very necessary part of dealing with this disorder. Lisa, the wife of a man with LBD wrote, “The disease marches ahead, claiming brain cells as little battles of victory as it proceeds with its destructive path, not too unlike Sherman's march to the sea during the Civil War.” She continues, “ Luckily, it is slow. It eats away in little increments, allowing time for the patient and family to adapt. We liked to travel—and we still can. We traded our large 5th wheel camper for a minivan and stay in hotels. When my husband’s driving became scary, I took over that chore, BUT we still travel. With similar adjustments, we still eat out and fish and go visiting family and friends. When he can no longer tie his shoes, we'll buy slip-ons. When he can no longer button his shirts, we'll get pullovers. I often have to remind him (and myself) that the disease hasn't stopped us from doing anything we love to do.”
And that’s where the attitude comes in. Lisa asks, “Does it matter when he puts salad dressing on his spaghetti or answers the remote control instead of the phone? Does it matter that I have to help him sign in to his email (every time) or that he has trouble unlocking his car door to get out? Who does it harm when he turns the phone backwards or orders me a cup of coffee when I don't drink coffee?” She says she knows that eventually his condition will stop their travels and evenings out with friends. “But until then, we adapt and enjoy every moment we have.”
When the doctor recently asked Lisa's husband how he was doing, he answered, "I think I'm doing fine." He said it with a smile and he meant it. And that's when she really got it. Although the disease had progressed from their last appointment six months ago, they really WERE doing fine, adapting and moving ahead with life. Lisa ended with, “In the big picture, we're better off than many of our friends who spend their lives fretting over small stuff that really isn't important at all. Life gave us a lemon. We might not be able to make lemonade, but a glass of water with a twist of lemon will still satisfy our thirst. And that's the point, isn't it?”
What more can I add?
Thank you, Lisa, for letting us use your insightful online support group entry.
And then there’s adaption, a very necessary part of dealing with this disorder. Lisa, the wife of a man with LBD wrote, “The disease marches ahead, claiming brain cells as little battles of victory as it proceeds with its destructive path, not too unlike Sherman's march to the sea during the Civil War.” She continues, “ Luckily, it is slow. It eats away in little increments, allowing time for the patient and family to adapt. We liked to travel—and we still can. We traded our large 5th wheel camper for a minivan and stay in hotels. When my husband’s driving became scary, I took over that chore, BUT we still travel. With similar adjustments, we still eat out and fish and go visiting family and friends. When he can no longer tie his shoes, we'll buy slip-ons. When he can no longer button his shirts, we'll get pullovers. I often have to remind him (and myself) that the disease hasn't stopped us from doing anything we love to do.”
And that’s where the attitude comes in. Lisa asks, “Does it matter when he puts salad dressing on his spaghetti or answers the remote control instead of the phone? Does it matter that I have to help him sign in to his email (every time) or that he has trouble unlocking his car door to get out? Who does it harm when he turns the phone backwards or orders me a cup of coffee when I don't drink coffee?” She says she knows that eventually his condition will stop their travels and evenings out with friends. “But until then, we adapt and enjoy every moment we have.”
When the doctor recently asked Lisa's husband how he was doing, he answered, "I think I'm doing fine." He said it with a smile and he meant it. And that's when she really got it. Although the disease had progressed from their last appointment six months ago, they really WERE doing fine, adapting and moving ahead with life. Lisa ended with, “In the big picture, we're better off than many of our friends who spend their lives fretting over small stuff that really isn't important at all. Life gave us a lemon. We might not be able to make lemonade, but a glass of water with a twist of lemon will still satisfy our thirst. And that's the point, isn't it?”
What more can I add?
Thank you, Lisa, for letting us use your insightful online support group entry.
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