Merry Christmas to all our readers. We are going to spend the day with family and enjoy that special closeness that family can bring. We hope you too will have a wonderful holiday, full of peace and love.
Helen and Jim Whitworth
Friday, December 25, 2015
Friday, December 18, 2015
Holiday Hints
Holidays can be meaningful, enriching times for both your loved one and your family. Maintaining or adapting family rituals and traditions helps all family members feel a sense of belonging and family identity. For a person with dementia, this link with a familiar past can be reassuring. The tips below can help you and your loved one visit and reconnect with family, friends, and neighbors during holidays.
Finding the Right Balance. Many caregivers have mixed feelings about holidays. They may have happy memories of the past, but they also may worry about the extra demands that holidays make on their time and energy. Here are some ways to balance doing many holiday-related activities while taking care of your own needs and those of your loved one:
• Celebrate holidays that are important to you. Include your loved one as much as possible.
• Set some limits, and be clear about them with others. You do not have to live up to the expectations of friends or relatives. Your situation is different now.
• Involve your loved one in simple holiday preparations, or have him or her observe your preparations. Observing you will familiarize him or her with the upcoming festivities. Participating with you may give the person the pleasure of helping and the fun of anticipating and reminiscing.
• Encourage friends and family to visit even if it’s difficult. Limit the number of visitors at any one time, or have a few people visit quietly with your loved one in a separate room.
• Prepare quiet distractions to use, such as a family photo album, if your loved one becomes upset or over-stimulated.
• Try to avoid situations that may confuse or frustrate your loved one, such as crowds, changes in routine, and strange places. Also try to stay away from noise, loud conversations, loud music, lighting that is too bright or too dark, and having too much rich food or drink (especially alcohol). This is especially true for our LBD loved ones, for they tend to be super-sensitive to so many things besides drugs--noise, light, crowds...
• Find time for holiday activities you like to do. If you receive invitations to celebrations that your loved one cannot attend, go yourself. Ask a friend or family member to spend time with the person while you’re out.
Preparing Guests. Explain to guests that the your loved one does not always remember what is expected and acceptable. Give examples of unusual behaviors that may take place such as incontinence, eating food with fingers, wandering, or hallucinations.
• If this is the first visit since LBD showed up, tell guests that the visit may be painful. Your loved one may not remember guests’ names or relationships but can still enjoy their company. With LBD, misidentification may be more likely.
• Explain that memory loss and misidentification is the result of the disease and is not intentional.
• Stress that the meaningfulness of the moment together matters more than what the person remembers.
Preparing Your Loved One. These tips can help your loved one enjoy visitors with less stress.
• Begin showing a photo of the guest to the person a week before arrival. Each day, explain who the visitor is while showing the photo.
• Arrange a phone call between your loved one and the visitor. The call gives the visitor an idea of what to expect and gives your loved one an opportunity to become familiar with the visitor.
• Keep routines as close to normal as possible.
• During the hustle and bustle of the holiday season, guard against fatigue and find time for adequate rest--for both of you. Your stress will increase your loved ones!
Adapted from the NIA's booklet, Holiday Hints: Alzheimer's Caregiving Tips
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.
Finding the Right Balance. Many caregivers have mixed feelings about holidays. They may have happy memories of the past, but they also may worry about the extra demands that holidays make on their time and energy. Here are some ways to balance doing many holiday-related activities while taking care of your own needs and those of your loved one:
• Celebrate holidays that are important to you. Include your loved one as much as possible.
• Set some limits, and be clear about them with others. You do not have to live up to the expectations of friends or relatives. Your situation is different now.
• Involve your loved one in simple holiday preparations, or have him or her observe your preparations. Observing you will familiarize him or her with the upcoming festivities. Participating with you may give the person the pleasure of helping and the fun of anticipating and reminiscing.
• Encourage friends and family to visit even if it’s difficult. Limit the number of visitors at any one time, or have a few people visit quietly with your loved one in a separate room.
• Prepare quiet distractions to use, such as a family photo album, if your loved one becomes upset or over-stimulated.
• Try to avoid situations that may confuse or frustrate your loved one, such as crowds, changes in routine, and strange places. Also try to stay away from noise, loud conversations, loud music, lighting that is too bright or too dark, and having too much rich food or drink (especially alcohol). This is especially true for our LBD loved ones, for they tend to be super-sensitive to so many things besides drugs--noise, light, crowds...
• Find time for holiday activities you like to do. If you receive invitations to celebrations that your loved one cannot attend, go yourself. Ask a friend or family member to spend time with the person while you’re out.
Preparing Guests. Explain to guests that the your loved one does not always remember what is expected and acceptable. Give examples of unusual behaviors that may take place such as incontinence, eating food with fingers, wandering, or hallucinations.
• If this is the first visit since LBD showed up, tell guests that the visit may be painful. Your loved one may not remember guests’ names or relationships but can still enjoy their company. With LBD, misidentification may be more likely.
• Explain that memory loss and misidentification is the result of the disease and is not intentional.
• Stress that the meaningfulness of the moment together matters more than what the person remembers.
Preparing Your Loved One. These tips can help your loved one enjoy visitors with less stress.
• Begin showing a photo of the guest to the person a week before arrival. Each day, explain who the visitor is while showing the photo.
• Arrange a phone call between your loved one and the visitor. The call gives the visitor an idea of what to expect and gives your loved one an opportunity to become familiar with the visitor.
• Keep routines as close to normal as possible.
• During the hustle and bustle of the holiday season, guard against fatigue and find time for adequate rest--for both of you. Your stress will increase your loved ones!
Adapted from the NIA's booklet, Holiday Hints: Alzheimer's Caregiving Tips
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.
Friday, December 11, 2015
Waiting for the Big One
A (nameless, please) caregiver posted this recently and gave me permission to use it in our blog. Since the holidays often bring out the worst in Lewy, this might be a good time for all of you out there in Lewy Land to remember that you aren't alone:
I've been of late thinking this dreadful feeling I always have is familiar. Is it from childhood? Some event I've forgotten? A repressed memory? I was in all the big and small earthquakes in Los Angeles and actually worked in disaster response for several years. It hit me a while ago. That's the feeling. Living with Lewy, at least this last year, is like waiting for an earthquake.
When will it hit? Stop? What kind of damage will it do? I can't prepare. So everything has to be left to chance. Nothing planned. Something as simple as thinking I better do laundry tomorrow. But tomorrow comes and there's a 6.5 on the Lewy Scale in the form of a major emotional upheaval. 10 hours. All time and energy has to be focused on containing the situation. You know the drill. Laundry out of the question. Recycle the towels and wear the same PJs for a third night.
I invited people over for dinner this week. Don't I ever learn? Thinking I'll be able to clean AND cook is practically taunting Lewy. Sending him an engraved invitation. And right on time, here comes another one and it's a big one. The wolves are outside. He hates everybody including me. The dogs told him I tried to hurt them. Why is the moon out instead of the sun? Can you see thru me? Look at this. What's that? Where's my wife? If I try to put salt out this winter, that's it. He's out of here.
So instead of slicing and dicing, it's soothing and placating. Instead of hearing praises for my signature smothered short ribs and 5 cheese mac & cheese, its pitying looks when I put out the paper plates, pizza and a side salad. No dessert. No clean cups for coffee. Out of cream anyway. They already think I've let myself go. Gained 30 lbs., don't get my hair, nails done anymore. If I tried to explain life with Lewy they'd think I'M insane.
I say a prayer that this earthquake subsides and some part of the visit can be salvaged. That he doesn't start trying to menace and intimidate the people he always loved most and would protect with his life had Lewy not possessed him like some evil spirit. He doesn't. He stays quiet. They leave. He says, "That was fun. How come people don't come over like they used to?" Gotta love him. Gotta be thankful he's oblivious to most of it and forgets quickly. LBD should have a subtitle: "Waiting for the Big One."
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.
I've been of late thinking this dreadful feeling I always have is familiar. Is it from childhood? Some event I've forgotten? A repressed memory? I was in all the big and small earthquakes in Los Angeles and actually worked in disaster response for several years. It hit me a while ago. That's the feeling. Living with Lewy, at least this last year, is like waiting for an earthquake.
When will it hit? Stop? What kind of damage will it do? I can't prepare. So everything has to be left to chance. Nothing planned. Something as simple as thinking I better do laundry tomorrow. But tomorrow comes and there's a 6.5 on the Lewy Scale in the form of a major emotional upheaval. 10 hours. All time and energy has to be focused on containing the situation. You know the drill. Laundry out of the question. Recycle the towels and wear the same PJs for a third night.
I invited people over for dinner this week. Don't I ever learn? Thinking I'll be able to clean AND cook is practically taunting Lewy. Sending him an engraved invitation. And right on time, here comes another one and it's a big one. The wolves are outside. He hates everybody including me. The dogs told him I tried to hurt them. Why is the moon out instead of the sun? Can you see thru me? Look at this. What's that? Where's my wife? If I try to put salt out this winter, that's it. He's out of here.
So instead of slicing and dicing, it's soothing and placating. Instead of hearing praises for my signature smothered short ribs and 5 cheese mac & cheese, its pitying looks when I put out the paper plates, pizza and a side salad. No dessert. No clean cups for coffee. Out of cream anyway. They already think I've let myself go. Gained 30 lbs., don't get my hair, nails done anymore. If I tried to explain life with Lewy they'd think I'M insane.
I say a prayer that this earthquake subsides and some part of the visit can be salvaged. That he doesn't start trying to menace and intimidate the people he always loved most and would protect with his life had Lewy not possessed him like some evil spirit. He doesn't. He stays quiet. They leave. He says, "That was fun. How come people don't come over like they used to?" Gotta love him. Gotta be thankful he's oblivious to most of it and forgets quickly. LBD should have a subtitle: "Waiting for the Big One."
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.
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