2021 LBD Summit Recorded Content & More!

May 4, 2021 | Jodi Melius | @jodimelius | Comments (29)

Recorded portions from the 2021 Lewy Body Dementia Virtual  Summit will be posted soon on the Dementia Hub blog.  In addition, a new LBD Video Series will be available in the coming weeks.

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@jodimelius

Thank you, Jodi, for directing me to this informative site. My husband was diagnosed with Parkinson's/Lewy Body Dementia two years ago by Mayo doctors in Arizona. His Mayo medical team has been wonderful in caring for him, and helping me to understand his medical needs/journey. The Parkinson'/LBD diagnosis came some time after he had suffered two strokes (3 years ago), and just prior to a total hip replacement. I actually began noticing cognitive changes about 8 years ago. I began to take notes of my observations because "strange things" were happening. Of course, he tried to tell me that he "had always been this way" — and that I "was the one who was changing." I thought I was losing my mind!

I have been my husband's only caregiver for these past three years. It is exhausting, with never a day or night off. I know that eventually, I may need help; however, we live in a very rural community with at least 50 miles to services (PT, hospital, doctors, pharmacy, etc.) and it is difficult to get anyone to do "in home" care. Eventually, we may need to sell our home and move closer to civilization… but I am not ready, nor have the energy, to do that yet.

I look forward to learning more about my husband's diagnosis, and sharing experiences with other caregivers.

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@hbjuniperflat

Thank you, Jodi, for directing me to this informative site. My husband was diagnosed with Parkinson's/Lewy Body Dementia two years ago by Mayo doctors in Arizona. His Mayo medical team has been wonderful in caring for him, and helping me to understand his medical needs/journey. The Parkinson'/LBD diagnosis came some time after he had suffered two strokes (3 years ago), and just prior to a total hip replacement. I actually began noticing cognitive changes about 8 years ago. I began to take notes of my observations because "strange things" were happening. Of course, he tried to tell me that he "had always been this way" — and that I "was the one who was changing." I thought I was losing my mind!

I have been my husband's only caregiver for these past three years. It is exhausting, with never a day or night off. I know that eventually, I may need help; however, we live in a very rural community with at least 50 miles to services (PT, hospital, doctors, pharmacy, etc.) and it is difficult to get anyone to do "in home" care. Eventually, we may need to sell our home and move closer to civilization… but I am not ready, nor have the energy, to do that yet.

I look forward to learning more about my husband's diagnosis, and sharing experiences with other caregivers.

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Welcome hbjuniperflat. Love the username. Do you have a liking for junipers?

I can certainly understand the extra challenges of being a single caregiver in a remote/rural community. I encourage you to join the discussion in this group.
– Caregivers: Dementia (https://connect.mayoclinic.org/group/caregivers-dementia/)

You might want to start by introducing yourself here:
– Introductions: Are you caring for someone with dementia? https://connect.mayoclinic.org/discussion/caregiving-for-dementia-sufferers/

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Hello @hbjuniperflat

I would like to welcome you to Mayo Clinic Connect, a patient support group. On Connect we are not medical professionals but we share our experiences in order to encourage each other. I can understand your need for information, support and, connect with others who are also caregivers.

I would like to invite you to join one of the Connect discussions that might be helpful to you. Here is a link to a discussion, https://connect.mayoclinic.org/discussion/lewy-body/.

If you care to share more, what is your husband's most troublesome symptom right now? Is it walking, gait, balance, sleep problems, etc.?

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I missed the the first part of the Summit as i was called to come to the Nursing Home where my significant other is staying due to report of worsening condition. I am looking forward to the recording asap. I have not had any kind of satisfactory care either in Memory Care or Nursing Homes. He is on Hospice now in Nursing home. I am considering returning him home but not sure that I can adequately take care of him. He fluctuates from day to day being unresponsive to being more alert with eyes open and tries to speak but sometimes doesn't make sense or volume is too low to understand. I can tell he understands me on his better days at times. I am so disappointed with the care he has received. I am considering bringing him back home but not sure if I can physically take proper care of him.

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@mjthoma

I missed the the first part of the Summit as i was called to come to the Nursing Home where my significant other is staying due to report of worsening condition. I am looking forward to the recording asap. I have not had any kind of satisfactory care either in Memory Care or Nursing Homes. He is on Hospice now in Nursing home. I am considering returning him home but not sure that I can adequately take care of him. He fluctuates from day to day being unresponsive to being more alert with eyes open and tries to speak but sometimes doesn't make sense or volume is too low to understand. I can tell he understands me on his better days at times. I am so disappointed with the care he has received. I am considering bringing him back home but not sure if I can physically take proper care of him.

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Thank you for sharing your experiences. There are no easy words to use in response, but I appreciate your honesty in sharing these very difficult decisions that you are faced with. I know many other caregivers may also relate to what you are sharing.

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@colleenyoung

Welcome hbjuniperflat. Love the username. Do you have a liking for junipers?

I can certainly understand the extra challenges of being a single caregiver in a remote/rural community. I encourage you to join the discussion in this group.
– Caregivers: Dementia (https://connect.mayoclinic.org/group/caregivers-dementia/)

You might want to start by introducing yourself here:
– Introductions: Are you caring for someone with dementia? https://connect.mayoclinic.org/discussion/caregiving-for-dementia-sufferers/

Jump to this post

Thank you for your warm welcome and links to other groups. Yes, I do love junipers; however, our user name comes from an area of high plateau in Oregon known as Juniper Flat. Palm trees are actually my favorite! LOL

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@hopeful33250

Hello @hbjuniperflat

I would like to welcome you to Mayo Clinic Connect, a patient support group. On Connect we are not medical professionals but we share our experiences in order to encourage each other. I can understand your need for information, support and, connect with others who are also caregivers.

I would like to invite you to join one of the Connect discussions that might be helpful to you. Here is a link to a discussion, https://connect.mayoclinic.org/discussion/lewy-body/.

If you care to share more, what is your husband's most troublesome symptom right now? Is it walking, gait, balance, sleep problems, etc.?

Jump to this post

My husband's most troublesome symptoms right now are sleep problems (diagnosed with REM Sleep Behavior Disorder) and short term memory loss from two strokes. In addition, the LBD adds lots of confusion to each day. Example: the other day he asked me, "What's the cowboy's name over there?" When this happens, I don't know if he is hallucinating, or if he is just not able to come up with the right word to describe what he wants to know. It actually turned out to be the latter in this case… he was asking about a cactus. Keeps me on my toes, that's for sure.

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@hbjuniperflat

My husband's most troublesome symptoms right now are sleep problems (diagnosed with REM Sleep Behavior Disorder) and short term memory loss from two strokes. In addition, the LBD adds lots of confusion to each day. Example: the other day he asked me, "What's the cowboy's name over there?" When this happens, I don't know if he is hallucinating, or if he is just not able to come up with the right word to describe what he wants to know. It actually turned out to be the latter in this case… he was asking about a cactus. Keeps me on my toes, that's for sure.

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@hbjuniperflat

You describe your husband's difficulties very well. In the presentation on LBD last week, sleep problems were addressed. It was reported by the doctors in the presentation that addressing the sleep problem can decrease some of the other dementia symptoms.

What sort of sleep aids is your husband using? Many people use a CPAP machine if they have sleep apnea. I was surprised to learn that Melatonin is also often used.

I would like to invite @kristin816 to this discussion. She is a caregiver for her father with LBD. Perhaps she can add something to this discussion.

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@hopeful33250

@hbjuniperflat

You describe your husband's difficulties very well. In the presentation on LBD last week, sleep problems were addressed. It was reported by the doctors in the presentation that addressing the sleep problem can decrease some of the other dementia symptoms.

What sort of sleep aids is your husband using? Many people use a CPAP machine if they have sleep apnea. I was surprised to learn that Melatonin is also often used.

I would like to invite @kristin816 to this discussion. She is a caregiver for her father with LBD. Perhaps she can add something to this discussion.

Jump to this post

He has been through the sleep assessments at Mayo. No sleep apnea, so no CPAP machine is necessary. He does take a Melatonin to help with his disorder. The difficult part is that when he dreams it is usually violent episodes and he tries to defend himself. At first, I would try to wake him, but he would then think I was the attacker. Without being able to wake him, I would receive the brunt of his "protecting himself." His neurologist at Mayo told me to not try to wake him, but to remove myself so that I would not be hurt. Sometimes, he hurts himself by hitting the headboard, or thrusting himself out of the bed. Though it isn't what we wanted, I can no longer sleep with him. I must protect myself so that I can continue to care for him. (Doctor's suggestion).

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Hello @hbjuniperflat & @hopeful33250 – Thanks for inviting me to this conversation on LBD- I enjoyed the recent LBD Summit – and learned a lot of tips – one was to try different Melatonin supplements to see which one works best. I was ordering one on Amazon – and found a time-release one – and thought why not? and WOW! that has keep my father asleep for 6+ hours most nights. My parents do sleep in separate bedrooms now- so my mother can get some good rest each night- because my father was "active" in the night and would lash out. (his room is smaller and has only the minimum of furniture – and far away from the bed).

I also agree with the "don't wake 'em" and I am the queen of "agree & re-direct" with some of his stranger comments/ visualizations. I have a few "regular" subjects to discuss with him in those situations – the birds at the feeders, fishing & camping, and family vacations.

Joining online caregiving groups has also helped us to learn more about Alz and LBD and other peoples experiences – I am attending via zoom my local Alz group as well as a LBD group.

Other thoughts – Consider moving before you need to -This was the best decision my parents made at the beginning of 2020.

My parents moved to a retirement community in March 2020 – and even thought it was a lot of hard work and super disruptive for my father – my mother (and I) have enjoyed a lot of peace / relief that she is not "alone" at night with my father in their house – she can call on people if she needs help with anything etc … She was super worried about him falling down the stairs at their home – how would she cope etc … what would happen to him if she fell, got sick, had an accident, lost power in a storm etc …

One of the social workers at our local hospital system recommended we look for places (assisted living / memory care / independent living) – before we "needed" a place for my parents to go – so that we did not have to make a decision in an rush due to an "emergency" situation. That turned out to be the best advise ever! My parents found a lovely apartment in a community they can "grow" into (as their care needs change).

My father gets turned around a lot in the new place – and has trouble remembering his bedroom is to the left not the right – but hey – he was doing that at their house too. It was hard for both of them to make a lot of decisions at once with all their stuff – so we have a storage unit – so we can re-visit at a later time – that brought my father a lot of peace that we were not tossing out all his camping stuff (in case he wanted to go again) but rather storing it for a future trip.

Hope this crazy morning ramble is helpful – sending you lots of positive vibes! Kristin

REPLY

I'm so glad that you are taking care of yourself and keeping safe, @hbjuniperflat, that is important for all caregivers. I would encourage you to join one of Connect's caregivers' discussion groups. Here is the link to those discussions, https://connect.mayoclinic.org/group/caregivers-dementia/. If you look at the list of discussions you will that there are several groups who are discussing Lewy Body Dementia.

Where do you feel you need the most support right now?

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@kristin816

Hello @hbjuniperflat & @hopeful33250 – Thanks for inviting me to this conversation on LBD- I enjoyed the recent LBD Summit – and learned a lot of tips – one was to try different Melatonin supplements to see which one works best. I was ordering one on Amazon – and found a time-release one – and thought why not? and WOW! that has keep my father asleep for 6+ hours most nights. My parents do sleep in separate bedrooms now- so my mother can get some good rest each night- because my father was "active" in the night and would lash out. (his room is smaller and has only the minimum of furniture – and far away from the bed).

I also agree with the "don't wake 'em" and I am the queen of "agree & re-direct" with some of his stranger comments/ visualizations. I have a few "regular" subjects to discuss with him in those situations – the birds at the feeders, fishing & camping, and family vacations.

Joining online caregiving groups has also helped us to learn more about Alz and LBD and other peoples experiences – I am attending via zoom my local Alz group as well as a LBD group.

Other thoughts – Consider moving before you need to -This was the best decision my parents made at the beginning of 2020.

My parents moved to a retirement community in March 2020 – and even thought it was a lot of hard work and super disruptive for my father – my mother (and I) have enjoyed a lot of peace / relief that she is not "alone" at night with my father in their house – she can call on people if she needs help with anything etc … She was super worried about him falling down the stairs at their home – how would she cope etc … what would happen to him if she fell, got sick, had an accident, lost power in a storm etc …

One of the social workers at our local hospital system recommended we look for places (assisted living / memory care / independent living) – before we "needed" a place for my parents to go – so that we did not have to make a decision in an rush due to an "emergency" situation. That turned out to be the best advise ever! My parents found a lovely apartment in a community they can "grow" into (as their care needs change).

My father gets turned around a lot in the new place – and has trouble remembering his bedroom is to the left not the right – but hey – he was doing that at their house too. It was hard for both of them to make a lot of decisions at once with all their stuff – so we have a storage unit – so we can re-visit at a later time – that brought my father a lot of peace that we were not tossing out all his camping stuff (in case he wanted to go again) but rather storing it for a future trip.

Hope this crazy morning ramble is helpful – sending you lots of positive vibes! Kristin

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Great ideas, @kristin816. I'm sure that @hbjuniperflat will appreciate all of your ideas. I really like how you proactively pursued the changes that you needed to make before a crisis came about!

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