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.
Monday, November 30, 2015
Friday, November 27, 2015
Happy Thanksgiving
We are spending this Thanksgiving in Las Vegas--with family, not on the strip! I am taking a vacation away from my computer to enjoy our time together, and so we wish you a Happy Thanksgiving in advance. Next week's blog will be the one I promised you some time ago on marijuana.
Saturday, November 21, 2015
Holiday Suggestions
The information in this blog is still so pertinent that even though it was printed last year, here it is again. There are some ideas here to help you make your loved one's holidays, and yours too!, more enjoyable and less stressful. Hope they help!
The holidays are a time of feasting, family and fun. At least, that is what we hope they will be. When Parkinson’s or LBD becomes a part of the family, some adjustments may need to be made. While feasting may still be a part of the agenda, changes in the kinds of food you eat and even when you eat it might be advisable. Family can be a wonderful blessing but often our expectations outreach reality, especially at holiday times when we want everything to be perfect. And finally, what is “fun” changes as one’s body and responses to stimuli changes.
Much of our holiday food is made with simple carbohydrates (sugars, high fructose corn syrup and white sugar). It is becoming clear that these foods are not supportive of good health in general, and especially not of good cognition—always an issue for anyone with a Lewy body disorder like PD or LBD. For the cook, include more complex carbohydrates like fruits and vegetables. For people at risk for cognitive impairment, go ahead and enjoy some of the traditional foods, but savor smaller helpings and resist taking seconds.
Proteins and saturated fats (think “animal fats”) also play a prominent part in holiday meals. Dopamine and protein share “carriers” for crossing the intestinal wall and the blood brain barrier. Competition for these carriers will delay or reduce the medication’s effect. Meals that are high in saturated fat take longer to digest, thus delaying medication absorption. All of this may leave you feeling sluggish and fatigued. Try taking your medication away from meal time, with a small amount of food to avoid nausea. For the cook, consider serving fish like cod or salmon, and using omega-3 fatty acids such as olive oil instead of saturated fats whenever you can. The omega-3s digest easily and fish digests in about half the time as it takes for other proteins.
As Parkinson’s or LBD advances, one’s tolerance for stress decreases. Families are important but they can also be huge triggers for stress. There can be expectations that end in disappointments, financial pressures over spending issues, unresolved family-of-origin issues that pop up when a family member comes to visit. Make an effort to keep stress levels low during this time any way you can. Diffusing some soothing lavender or rosemary into the air, practicing deep breathing or add some soothing massage sessions are some suggestions. Also ask family members to keep conversations non-argumentative and focused on more pleasant subjects.
Fun. The holidays are times of parties and family gatherings and activities that you may not do at any other time. For the person with Parkinson’s, preparing a big family meal may no longer be possible. Or if cognition is slipping, the board games after dinner may have passed the point of challenge and instead, become painful evidence of lost abilities. Think ahead and find ways to adapt. Can you order a prepared meal or share the responsibilities with other family members? Can you play an easier game or do something else like look at old family photo albums? Thinking ahead can make all the difference where fun is considered.
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
The holidays are a time of feasting, family and fun. At least, that is what we hope they will be. When Parkinson’s or LBD becomes a part of the family, some adjustments may need to be made. While feasting may still be a part of the agenda, changes in the kinds of food you eat and even when you eat it might be advisable. Family can be a wonderful blessing but often our expectations outreach reality, especially at holiday times when we want everything to be perfect. And finally, what is “fun” changes as one’s body and responses to stimuli changes.
Much of our holiday food is made with simple carbohydrates (sugars, high fructose corn syrup and white sugar). It is becoming clear that these foods are not supportive of good health in general, and especially not of good cognition—always an issue for anyone with a Lewy body disorder like PD or LBD. For the cook, include more complex carbohydrates like fruits and vegetables. For people at risk for cognitive impairment, go ahead and enjoy some of the traditional foods, but savor smaller helpings and resist taking seconds.
Proteins and saturated fats (think “animal fats”) also play a prominent part in holiday meals. Dopamine and protein share “carriers” for crossing the intestinal wall and the blood brain barrier. Competition for these carriers will delay or reduce the medication’s effect. Meals that are high in saturated fat take longer to digest, thus delaying medication absorption. All of this may leave you feeling sluggish and fatigued. Try taking your medication away from meal time, with a small amount of food to avoid nausea. For the cook, consider serving fish like cod or salmon, and using omega-3 fatty acids such as olive oil instead of saturated fats whenever you can. The omega-3s digest easily and fish digests in about half the time as it takes for other proteins.
As Parkinson’s or LBD advances, one’s tolerance for stress decreases. Families are important but they can also be huge triggers for stress. There can be expectations that end in disappointments, financial pressures over spending issues, unresolved family-of-origin issues that pop up when a family member comes to visit. Make an effort to keep stress levels low during this time any way you can. Diffusing some soothing lavender or rosemary into the air, practicing deep breathing or add some soothing massage sessions are some suggestions. Also ask family members to keep conversations non-argumentative and focused on more pleasant subjects.
Fun. The holidays are times of parties and family gatherings and activities that you may not do at any other time. For the person with Parkinson’s, preparing a big family meal may no longer be possible. Or if cognition is slipping, the board games after dinner may have passed the point of challenge and instead, become painful evidence of lost abilities. Think ahead and find ways to adapt. Can you order a prepared meal or share the responsibilities with other family members? Can you play an easier game or do something else like look at old family photo albums? Thinking ahead can make all the difference where fun is considered.
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
Saturday, November 14, 2015
Dealing With Ambiguous Grief
Last week, our guest blogger, Lisa Cooke, explained ambiguous grief and how it affects the LBD caregiver. If you haven't already read it, go back and read it now, before you read this. This week, Lisa expands on her list of ways in which a caregiver can cope with ambiguous loss and grief.
Prepare for the future. Use the grief to spur you toward taking care of legal issues, such as power of attorney, updating wills and other things to secure the future for both you and your loved one. If your loved one is able, discuss end of life issues like if he wants a feeding tube when he can no longer swallow. These questions are uncomfortable, but it will make those decisions much easier when the time comes if you know his wishes.
Educate yourself. Learn everything you can about the illness and the treatments available. Knowledge is power and caregivers need all the power they can get.
Join a support group. Everyone needs someone they can talk to. If there are no local support groups you can join, find an on-line group. There are several available and they offer not only support, but information. Most of what I’ve learned about LBD I learned from other caregivers. (There are some links for caregiver groups on Lisa's Lewy Warriors site under “Helpful Links and Groups” at the top of the page.)
Get help and continue to live your life. This is a tough one, right? Won’t other people think you’re horrible if you hire aides and get some time off? First, no they probably won’t because they don’t know what you’re doing anyway. And secondly, if they do think you’re horrible, who cares? Your life is just as important as your loved ones. That doesn’t mean your loved one doesn’t need your help, it only means that you need your help too. According to Healthline, half of people providing care for someone with dementia becomes seriously ill or die before the patient does.
( http://contributors.healthline.com/family/why-caregivers-people-dementia-often-die-patient-themselves)
Don’t let yourself be in that 50%. If something happens to you, who will oversee the care of your loved one? Hire some help. Take a break when you need it or, better yet, before you need it. You can’t put your life on hold for what may be years of caregiving responsibilities.
Find Moments To Enjoy. Try to find things your loved one can enjoy, whether it’s watching movies, looking through photo albums, or enjoying a sun set. A close friend who is suffering from Parkinson’s Disease told me she looks for an excuse to laugh out loud every day. That’s some great advice.
Accept that your relationship has changed. Instead of thinking, “My loved one is either here or gone,” think, “My loved one is BOTH here and gone.”
Ambiguous loss is particularly difficult when the loved one is your spouse. If you are caring for a spouse, not only do you grieve the past you shared, you grieve for the future you will never have. For most, a caregiver’s spouse is the one person they go to when they’re upset or needing support and advice. Your spouse is the person who holds you when you cry. What are you supposed to do when they are the reason you’re crying?
One caregiver said she was suffering extreme grief with the “loss” of her husband until she accepted the fact that relationship no longer existed. He no longer remembered who she was.
“I was trying to hold on to something that was gone.”
She moved into another bedroom and removed her wedding ring. “From that point on,” she said, “I became his caregiver instead of his wife.” For her, withdrawing from the romantic relationship she once had with her husband was the only way she could cope with the difficult duties of caregiving.
Another woman said she allowed herself to grieve whenever her husband advanced to another stage. “I lit a candle and cried each time he had a major decline,” she said. Accepting that her grief was real and needed to be acknowledged helped her continue forward.
To Summarize
•Realize that your grief is real and is experienced by most caregivers.
•Accept and try to identify the new parameters of your relationship with your loved one.
•Allow yourself to grieve even though your loved one has not passed away.
•At least once a day, look in the mirror and say, “My life is important too.”
•Think, “My loved one is BOTH here and not here.”
•Find an excuse to laugh every day, even if you have to watch silly internet cat videos to do it.
Some more excellent advice can be found on the Alzheimer’s Association website. http://www.alzheimer.ca/en/Living-with-dementia/Grieving/ambiguous-loss-family
Thank you, Lisa, for allowing us to share your blog.
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.
Prepare for the future. Use the grief to spur you toward taking care of legal issues, such as power of attorney, updating wills and other things to secure the future for both you and your loved one. If your loved one is able, discuss end of life issues like if he wants a feeding tube when he can no longer swallow. These questions are uncomfortable, but it will make those decisions much easier when the time comes if you know his wishes.
Educate yourself. Learn everything you can about the illness and the treatments available. Knowledge is power and caregivers need all the power they can get.
Join a support group. Everyone needs someone they can talk to. If there are no local support groups you can join, find an on-line group. There are several available and they offer not only support, but information. Most of what I’ve learned about LBD I learned from other caregivers. (There are some links for caregiver groups on Lisa's Lewy Warriors site under “Helpful Links and Groups” at the top of the page.)
Get help and continue to live your life. This is a tough one, right? Won’t other people think you’re horrible if you hire aides and get some time off? First, no they probably won’t because they don’t know what you’re doing anyway. And secondly, if they do think you’re horrible, who cares? Your life is just as important as your loved ones. That doesn’t mean your loved one doesn’t need your help, it only means that you need your help too. According to Healthline, half of people providing care for someone with dementia becomes seriously ill or die before the patient does.
( http://contributors.healthline.com/family/why-caregivers-people-dementia-often-die-patient-themselves)
Don’t let yourself be in that 50%. If something happens to you, who will oversee the care of your loved one? Hire some help. Take a break when you need it or, better yet, before you need it. You can’t put your life on hold for what may be years of caregiving responsibilities.
Find Moments To Enjoy. Try to find things your loved one can enjoy, whether it’s watching movies, looking through photo albums, or enjoying a sun set. A close friend who is suffering from Parkinson’s Disease told me she looks for an excuse to laugh out loud every day. That’s some great advice.
Accept that your relationship has changed. Instead of thinking, “My loved one is either here or gone,” think, “My loved one is BOTH here and gone.”
Ambiguous loss is particularly difficult when the loved one is your spouse. If you are caring for a spouse, not only do you grieve the past you shared, you grieve for the future you will never have. For most, a caregiver’s spouse is the one person they go to when they’re upset or needing support and advice. Your spouse is the person who holds you when you cry. What are you supposed to do when they are the reason you’re crying?
One caregiver said she was suffering extreme grief with the “loss” of her husband until she accepted the fact that relationship no longer existed. He no longer remembered who she was.
“I was trying to hold on to something that was gone.”
She moved into another bedroom and removed her wedding ring. “From that point on,” she said, “I became his caregiver instead of his wife.” For her, withdrawing from the romantic relationship she once had with her husband was the only way she could cope with the difficult duties of caregiving.
Another woman said she allowed herself to grieve whenever her husband advanced to another stage. “I lit a candle and cried each time he had a major decline,” she said. Accepting that her grief was real and needed to be acknowledged helped her continue forward.
To Summarize
•Realize that your grief is real and is experienced by most caregivers.
•Accept and try to identify the new parameters of your relationship with your loved one.
•Allow yourself to grieve even though your loved one has not passed away.
•At least once a day, look in the mirror and say, “My life is important too.”
•Think, “My loved one is BOTH here and not here.”
•Find an excuse to laugh every day, even if you have to watch silly internet cat videos to do it.
Some more excellent advice can be found on the Alzheimer’s Association website. http://www.alzheimer.ca/en/Living-with-dementia/Grieving/ambiguous-loss-family
Thank you, Lisa, for allowing us to share your blog.
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.
Saturday, November 7, 2015
Why Do I Feel So Sad When My Spouse Is Sitting Right Here Beside Me?
I know I promised you a blog on alternative methods of handling pain but life intervened. It will come eventually. However, you have a treat, in guest writer, Lisa Cooke. This week's and next week's blog entries were first in her blog, Lewy Warriors. Lisa is an active LBD caregiver--and a wonderfully expressive writer. We are grateful that she allows us to repost an occasional blog of hers here.
“It’s odd that I miss my husband so much when he’s still sitting right beside me.”Sound familiar?
If you haven’t felt those emotions yourself, visit an
online support group and you’ll see similar statements every day from caregivers who don’t understand why they’re feeling such grief when their loved one is still alive. Psychiatrists refer to this as “Ambiguous Loss” and it’s very common with those who have loved ones with dementia, stroke, or traumatic brain injuries.
When you love a person, you love their thoughts, personality, memories, and the experiences you shared with them. So what happens when all those things are no longer there and you are left caring for the shell that used to contain the essence of your loved one?
The situation is even more complicated when dealing with an illness like Lewy Body Dementia because there are moments when the personality claws its way back to the surface for a brief visit, teasing the caregiver with memories of the way things used to be. The end result is crushing grief for the caregiver even though their loved one is still alive.
Grief is a complex process each person must go through in their own way and in their own time. It would be very difficult to find someone who hasn’t experienced grief of some sort in their lives, but ambiguous loss throws a curve that is hard to explain to an individual who has not experienced it.
Ambiguous loss is open ended.
There is no specific beginning and no specific end. It starts gradually as your loved one slips away in little increments. It may begin one day when your loved one can no longer discuss a movie you just saw, or you suddenly realize you can’t go on a trip to the mountains because your spouse can no longer hike. Maybe you find yourself afraid to go to work because you’re not sure if it’s safe to leave your loved one alone for that long.
For some reason you can’t put your finger on, you feel sadness as though something is missing, but that makes no sense, right? Your loved one is still here. He isn’t in the hospital and he still answers questions when you ask even if he rarely initiates a conversation.
The process occurs so slowly, you don’t see it creeping up on you until something triggers a flood of tears, or at least, a feeling of deep sadness. It might be a commercial on TV showing a mother and daughter laughing with each other. It might be the older couple sitting in the booth next to you in a restaurant, sharing a meal and a smile. Whatever the trigger, you find yourself slammed with grief that your friends can’t understand.
“You’re so lucky he’s still with you,” they say, not understanding that in actuality, he isn’t.
They don’t understand that you’ve found yourself in a relationship where all the rules have changed.
Your parent or spouse is now your child.
Unlike a typical death, ambiguous loss last months or years with no end in sight. The caregiver cannot begin to heal because the wound is torn open each day. The relationship the caregiver had with their loved one no longer exists, but they can’t simply walk away and start over because the physical body is still alive and needing care.
According to Paula Spencer Scott, author of, Surviving Alzheimer’s, “Dailey care isn’t the worst part of dealing with Alzheimer’s or other dementias, grief is.”
The Visiting Nurse Service of New York recommends 5 things you can do to help cope with ambiguous loss and grief. Lisa used their list as a starting point for the suggestions that will be in next week's blog. Next week she will expand on the following:
•Realize that your grief is real and is experienced by most caregivers.
•Accept and try to identify the new parameters of your relationship with your loved one.
•Allow yourself to grieve even though your loved one has not passed away.
•At least once a day, look in the mirror and say, “My life is important too.”
•Think, “My loved one is BOTH here and not here.”
•Find an excuse to laugh every day, even if you have to watch silly internet cat videos to do it.
Thank you again, Lisa, for allowing us to share your blog.
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.
“It’s odd that I miss my husband so much when he’s still sitting right beside me.”Sound familiar?
If you haven’t felt those emotions yourself, visit anonline support group and you’ll see similar statements every day from caregivers who don’t understand why they’re feeling such grief when their loved one is still alive. Psychiatrists refer to this as “Ambiguous Loss” and it’s very common with those who have loved ones with dementia, stroke, or traumatic brain injuries.
When you love a person, you love their thoughts, personality, memories, and the experiences you shared with them. So what happens when all those things are no longer there and you are left caring for the shell that used to contain the essence of your loved one?
The situation is even more complicated when dealing with an illness like Lewy Body Dementia because there are moments when the personality claws its way back to the surface for a brief visit, teasing the caregiver with memories of the way things used to be. The end result is crushing grief for the caregiver even though their loved one is still alive.
Grief is a complex process each person must go through in their own way and in their own time. It would be very difficult to find someone who hasn’t experienced grief of some sort in their lives, but ambiguous loss throws a curve that is hard to explain to an individual who has not experienced it.
Ambiguous loss is open ended.
There is no specific beginning and no specific end. It starts gradually as your loved one slips away in little increments. It may begin one day when your loved one can no longer discuss a movie you just saw, or you suddenly realize you can’t go on a trip to the mountains because your spouse can no longer hike. Maybe you find yourself afraid to go to work because you’re not sure if it’s safe to leave your loved one alone for that long.
For some reason you can’t put your finger on, you feel sadness as though something is missing, but that makes no sense, right? Your loved one is still here. He isn’t in the hospital and he still answers questions when you ask even if he rarely initiates a conversation.
The process occurs so slowly, you don’t see it creeping up on you until something triggers a flood of tears, or at least, a feeling of deep sadness. It might be a commercial on TV showing a mother and daughter laughing with each other. It might be the older couple sitting in the booth next to you in a restaurant, sharing a meal and a smile. Whatever the trigger, you find yourself slammed with grief that your friends can’t understand.
“You’re so lucky he’s still with you,” they say, not understanding that in actuality, he isn’t.
They don’t understand that you’ve found yourself in a relationship where all the rules have changed.
Your parent or spouse is now your child.
Unlike a typical death, ambiguous loss last months or years with no end in sight. The caregiver cannot begin to heal because the wound is torn open each day. The relationship the caregiver had with their loved one no longer exists, but they can’t simply walk away and start over because the physical body is still alive and needing care.
According to Paula Spencer Scott, author of, Surviving Alzheimer’s, “Dailey care isn’t the worst part of dealing with Alzheimer’s or other dementias, grief is.”
The Visiting Nurse Service of New York recommends 5 things you can do to help cope with ambiguous loss and grief. Lisa used their list as a starting point for the suggestions that will be in next week's blog. Next week she will expand on the following:
•Realize that your grief is real and is experienced by most caregivers.
•Accept and try to identify the new parameters of your relationship with your loved one.
•Allow yourself to grieve even though your loved one has not passed away.
•At least once a day, look in the mirror and say, “My life is important too.”
•Think, “My loved one is BOTH here and not here.”
•Find an excuse to laugh every day, even if you have to watch silly internet cat videos to do it.
Thank you again, Lisa, for allowing us to share your blog.
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.
Subscribe to:
Posts (Atom)