“Anti-Tau Drugs for PSP Move into Phase II”

There’s not much new here from this report from last week’s Movement Disorder Society conference in Vancouver.  This report focuses on two anti-tau drugs being studied in PSP — one from AbbVie and one from Bristol-Myers Squibb.  The BMS drug was recently licensed to Biogen.  Both drugs proved safe in phase I studies, and both have moved into phase II trials.

Tau is the protein involved in PSP and CBD.  It’s one of two proteins involved in Alzheimer’s.

Here’s a link to the report:  (you have to register — no charge to do so — at Medpage Today to read the article)

https://www.medpagetoday.com/meetingcoverage/mds/65883

Meeting Coverage > MDS
Anti-Tau Drugs for PSP Move into Phase II
But phase I study of one agent pulled from presentation
by Kristina Fiore, Deputy Managing Editor, MedPage Today
June 08, 2017

“The Five Love Languages of Caregiving”

This is a thought-provoking article written by a hospice social worker, Meredith Fields Lawler, LCSW, for Crossroads Hospice (based in several southern and midwestern states).

The ideas are based upon a book by Dr. Gary Chapman titled “The Five Love Languages,” which asserts that “people express and desire to receive expressions of love differently.”  The five languages are:

#1 – Words of Affirmation
#2 – Quality Time
#3 – Receiving Gifts
#4 – Acts of Service
#5 – Physical Touch

The hospice social worker suggests you know which of those five languages your loved one “speaks,” and then tailor your caregiving accordingly.

Food for thought….

Robin

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crhcf.org/Blog/the-five-love-languages-of-caregiving/

The Five Love Languages of Caregiving
by Meredith Fields Lawler, LCSW
Published June 28th, 2016
Crossroads Hospice Charitable Foundation

Love. It is such a simple word that has so many varying different expressions. There is the love we give to our spouse, which is different from the love expressed to our children, and yet different again in how we express love to our friends.

In 1992, renowned marriage expert Dr. Gary Chapman wrote a revolutionary book titled “The Five Love Languages” in which he helped us see that all people express and desire to receive expressions of love differently. Chapman’s book was focused on the marriage relationship, but since it was published, many companion pieces have been written about how these simple concepts are relatable to all relationships.

The caregiver role is one that is full of so many emotions and yet the central expression is love. It is true that some people give care out of a sense of obligation, but most have the driving force of love and devotion. Love is what gets them out of bed for the third time in the middle of the night as they hear their loved one calling. Love is what drives them to spend hours each week organizing medications. Love is what encourages them to sit down and listen to Mom tell the same story over and over again.

My sister, brother, mom and I all cared for our father when he was diagnosed with cancer and subsequently was admitted to a hospice program. Each of us loved my dad dearly, but how we expressed our love to him looked different. We are different people. Each of our relationships with Dad was unique and special. Love was so present in our caregiving in many ways.

Using Chapman’s iconic book, we will look at the Five Love Languages of Caregiving and how love is given and received in this relationship, and begin to appreciate and respect how different family members all express love and caregiving in their own unique way.

Using words that uplift and support caregivers can show them love and provide for their needs while on the caregiving journey.

Love Language #1: Words of Affirmation

“Love is kind. If then we are to communicate love verbally, we must use kind words.”
Dr. Gary Chapman

Jamie and her husband Carl cared for Jamie’s mother for many years before she passed away. First she was in their home and then they moved her into a nursing facility when she needed more care. Jamie made all the arrangements, planned transportation, signed the forms, packed her mom’s belongings and the many other tasks involved in moving a loved one into a nursing home.

The big day came and Jamie got to work getting her mom settled, but noticed that Carl was nowhere to be seen. She began to get frustrated as more time passed and still no sign of Carl. A couple of hours later, after all the unpacking had been done, Carl appears in the room and Jamie immediately gets angry with him. “Where have you been? I have been in here working myself to the bone and you have probably just been talking!”

Carl very calmly explains, “Yes, I have been talking. I have been talking to all of the staff. I introduced myself and told them about your mom and I was getting to know them. I have asked about their lives, their children and thanked them in advance for taking care of Grammy. I want them to know I care about them because then they will give Grammy more attention and affection when we are not here and I know that is a huge fear for you.”

In that moment, Jamie saw that Carl was being a caregiver in his way. He was giving words of affirmation to the staff and that is how he cared for her and her mother.

How to be a caregiver alongside someone whose love language is Words of Affirmation:

* Speak words of appreciation, encouragement and love to each other.
* Love does not keep a record of wrong. Use kindness in your words to each other and let the past be that; the past.
* Love is not demanding. When you need something, make a request and not a demand.
* Express gratefulness for what has been done and don’t focus on what has not.

The caregiving love language of spending quality time: Spending quality time with caregivers can communicate love to them and demonstrate to them your support.

Love Language #2: Quality Time

Spending quality time with the people you love is something that most of us enjoy, but for some, this is the ultimate expression of love. For those whose primary love language is Quality Time, sitting and talking, enjoying an activity together and being fully present is the ultimate way to give and receive love.

Mary and her husband Brad cared for their adult daughter who had developmental delays. Mary was the primary caregiver and did not work outside of the home. Brad was a hard worker and a loving provider for their family. For many years, he worked to build his business and provide financial security for his family.

He thought he was doing the most loving thing, but Mary was not happy. She was sad and felt so alone most days. Long days of caregiving would deplete her of any energy she had left. She would often say that she wished Brad would work less and spend more time with her, and yet Brad felt he was doing what would help her the most, as she wouldn’t have to worry about finances.

But, what Mary wanted was him. She wanted his attention and his love. They slowly began to figure this out and Brad began to make time with Mary more of a priority. He would arrange for someone to watch their daughter so they could go to dinner alone. He began to call her during the day, not to talk details, but to see how she was feeling and engage in her everyday life. Even when he had to be away for work, he created ways for Mary to feel his love and planned events for them once he returned.

As Dr. Chapman states, “One of the by-products of quality activities is that they provide a memory bank from which to draw in the years ahead.” Brad began to speak Mary’s love language and she was able to caregive from a happier, more secure place and peace returned to their home.

How to be a caregiver alongside someone whose love language is Quality Time:

* Learn to really listen when your loved one is speaking. Look them in the eye and do not attempt to complete another task while they are talking to you.
* Acknowledge their feelings without trying to “fix” anything, watch their body language and do not interrupt. Be fully present!
* Arrange for help with household chores to free up more quality time together.
* Make the time for quality activities — no more excuses.

Love Language #3: Receiving Gifts

“Almost everything ever written on the subject of love indicates that at the heart of love is the spirit of giving.”
Dr. Gary Chapman

Gift-giving is one of the oldest ways people express their love to one another. Whenever we attend a happy event, a wedding, baby shower, birthdays, or graduations, we bring gifts!

We honor people by spending time thinking about them, picking a gift out just for that one special person, wrapping it and presenting this beautiful visual representation of love. Very often, the dollar amount is not nearly as important as the time and thought devoted to the act of gift-giving.

Richard lived in an assisted living center and had three sons who all cared for him in their own way. His oldest managed his finances and ensured that everything was paid on time and that his money was being invested wisely. Richard’s middle son took him to doctor’s appointments, the grocery store and kept in communication with the staff at the facility. And Richard’s youngest son was the free spirit. He jumped from job to job and passion to passion.

He did not take on any “official” tasks in caring for his dad and his brothers would often get angry with him, and with Richard, because Richard would defend his youngest son. He would tell the other boys, “You don’t see him like I do. He comes and visits and always brings something: an article he thinks I will like ripped from an old magazine, a new shirt he found at Goodwill, his leftovers from lunch. Nothing big but he comes, he visits and he brings me something that lets me know he is always thinking of me. I feel loved by all of you, including your little brother.”

Richard was able to accept loving care freely given by each of his sons in all their unique and beautiful ways.

How to be a caregiver alongside someone whose love language is Receiving Gifts:

* Accept their gifts with gratitude and love no matter how small, even if you don’t like it.
* Honor the wisdom that one of the greatest gifts you can give is the gift of self. Be present for each other and slow down! Try not to rush around completing tasks, but give of yourself and your spirit.
* Bring them a gift — a small token of your appreciation that you are caregiving together. This will go such a long way in helping someone with this love language truly feel like you are a team.
* Acts of service support caregivers tangibly, showing them love through your outpouring of acts and service into their life.

Love Language #4: Acts of Service

Jan was caring for her father in her home, and her sister, Martha, lived close by and was an active caregiver as well. Jan and Martha worked so well together taking care of their daddy. They had love and respect for one another in the process of caregiving.

It was Martha’s practice to come by every day after work and check in on her dad and sister; she also knew that Jan’s love language is Acts of Service. So, when she arrived she would immediately take over whatever task Jan was doing and say something like, “I’ve got this. I can tell you have worked so hard today. Let me finish loading the dishwasher and cleaning up the kitchen.”

This was their routine to the point that when Jan saw Martha’s car turn the corner, she was filled with love for her sister and love for the caregiving process. Martha helped to fill Jan’s “love tank” so that the everyday duties of caregiving never felt crushing. She knew her sister understood her and appreciated her.

For a weary caregiver, (regardless of what their primary love language is) offering to help in tangible ways will sing love to them. “Let me know if I can do something for you,” is a lot less meaningful than “I would like to come and mow your yard on Wednesday. Let me know if that works with your schedule.” Offering very real help during a time when it can be hard for caregivers to even know what they need is a sure way to show your love and appreciation.

How to be a caregiver alongside someone whose love language is Acts of Service:

* Create a list of things you would like to do to help (bring a meal, clean their bathrooms, do laundry, go to the grocery store) and ask them which day would be good for them.
* When you are visiting, look around. If there is a broom handy, start sweeping while talking. If you notice that they are low on household staples when you leave, run by the store; drop those things off to them during your next visit.
* Get a group of friends together and have meals delivered a couple times a week.

Love Language #5: Physical Touch

Sadly, this life is full of crisis — auto accidents, illness, lost jobs, divorces and of course the death of dear loved ones. Crisis is all around us, and when these moments come, the natural instinct of many is to reach out and offer a hug. Physical touch is a way that all cultures show love and concern to each other. During times of crisis, we all long to feel loved, heard and supported.

Caregiving can have many crisis moments. “There are no more treatments.” “Your mother needs to be admitted to the hospital.” “The cancer has spread.” “I am so sorry, but you need to find another nursing home for your husband. He can’t stay here.” These are all statements that caregivers have heard and they each bring tremendous stress and sadness. For someone who has the primary love language of Physical Touch, a hug, a loving hand placed on the shoulder or a holding of the hand will all convey that you are present in their crisis in a huge way.

Barbara and her wife Vicky cared for Barbara’s brother, Gary, who was on hospice after a lengthy battle with cancer. He was living at an inpatient hospice facility and everyone knew that his time was short. Barbara was Gary’s primary caregiver and had been taking him to appointments, helping him through chemo, cooking for him, cleaning his home and doing all the other tasks of caregiving for many years. Barbara and Gary’s love for each other ran very deep

Vicky began to see her wife withdraw into herself as Gary began to slip away and become less responsive. Barbara would sit in the room with Gary, her arms tightly wrapped around herself, and every few minutes, she would reach out and touch Gary. Vicky realized that Barbara needed love. She needed to have a physical reminder that she was a good caregiver and had done well.

Vicky made a conscious decision to offer her love to Barbara in the ways that she needed. She held her hand, stood by Gary’s bed with a hand on Barbara’s shoulder and wiped her tears away as she cried. She was physically, and thus emotionally, present for Barbara.

As Gary took his last breath, Vicky held Barbara and supported her weight as she wept for her brother. Vicky did not let go and Barbara will say she does not remember much of that day except that “Vicky was there. She did not say much but she was with me. She held me, she loved me and I knew I could face tomorrow because she was going to be with me.”

How to be a caregiver alongside someone whose love language is Physical Touch:

* Find ways to offer your physical presence to them through a hug, holding a hand, stroking stoking their back or gently rubbing their shoulders.
* Do not shy away from their touch even if this is not your love language. If you did not grow up in a “touchy” family, it may seem awkward at first. Be patient with yourself as you learn to express love in a different way.
* Having something soft to hold can help someone whose love language is physical touch. When you have to leave, bring them a pillow to hold or a blanket to lay across their lap. This can be a great comfort.

All five of these love languages are important and should be present in any relationship. If someone you love has the primary love language of Gift-Giving, Gift Giving that does not mean that you never hug her or complete a task for her. As Dr. Chapman says say, all of the love languages will convey love, but when you find the one that really speaks to your loved one, that language that one will sing of your love for her.

My siblings, mother and I were able to love each other and my dad in very real ways and we are continuing even though Dad is now gone. My dad taught us about love — about meeting people where they are and loving them in the ways that they need. So even though Dad is not here physically with us anymore, his loving spirit will always be alive in our hearts.

* All stories are based on actual caregivers but the names and some details have been changed to protect confidentiality.

About Meredith Lawler, LCSW
Director of Outreach Programs at Crossroads Hospice Charitable Foundation
Meredith Fields Lawler is a Licensed Clinical Social Worker and the Director of Outreach Programs at Crossroads Hospice Charitable Foundation. A graduate of the University of Arkansas School of Social Work, Meredith has dedicated her career to medical social work, the elderly, hospice, death and dying and grief recovery work. In addition to her work at the Foundation, Meredith maintains a private practice in which her specialty is older adults undergoing life transitions, trauma, grief and loss. Meredith makes her home in Tulsa, OK with her husband and their three boys.

“Can Adult Siblings Get Along When Caring for Parents?”

This article on today’s Next Avenue website (nextavenue.org) is about adult siblings caring for their parents.

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www.nextavenue.org/adult-siblings-caring-for-parents/

Can Adult Siblings Get Along When Caring for Parents?
How that struggle can be helped by storytelling
June 12, 2017
By Liz Seegert
Next Avenue

There’s really no getting around the complicated relationships among siblings caring for parents. While some families work almost seamlessly as a team, others are like ships passing in the night, sharing little except a rotating schedule. And for some, conflict can be high.

Most of us try to make sense of these relationships through a method dating back to prehistoric times: storytelling. While it’s not the kind of storytelling that might immediately come to mind, this approach helps siblings manage and overcome the dynamics and challenges of caregiving, according to a new study.

What Is ‘Storytelling’ in Caregiving Relationships?

This “narrative sense-making” is how we frame our understanding of what’s going on and how we give meaning to shared parental caregiving.

“It’s playing through experiences in our minds and telling stories to ourselves and others to make sense of it retrospectively,” says lead study author Danielle Halliwell, a researcher at New Mexico State University. Strong, supportive sibling relationships can help with the psychological coping and well-being of family caregivers, but not everyone is so lucky. And often, our expectations don’t live up to the ideal created by the media or by society.

“Culture plays a large role in how we think we should go through life transitions with family members, so when it doesn’t go like that, it’s disappointing and we try to make sense of it by how we talk about it,” Halliwell explains.

3 Nearby Siblings, 3 Approaches Caring for Parents

For Kaye Vivian, her life situation — newly separated, self-employed and not tied to a specific location — dictated that she would move to Houston to live with her 89-year-old mother. Two siblings live near their mother, two others live out of state.

“My one brother who lives here is not that kind of caregiver,“ Vivian explains. “He’ll clean up the yard or bring dinner, but doesn’t have the kind of time you really need from people.” Her sister lives down the block from her mother, but withdrew from the caregiving scene after several years as the primary point person.

Vivian tells herself that her sister really wants a separate relationship with their mother and that the bad feelings between this sister and her stem from a sense of no longer being needed. It’s created a lot of anger and resentment, but “couldn’t be further from the truth,” Vivian says. In fact, her sister is still very much needed.

Lack of Communication Stokes Conflict

Humans are storytellers by nature, says Halliwell. We set up narratives so life makes sense — A happened, so B happened, so C happened, and so on. When she and her colleagues queried 20 caregivers with siblings about their caregiving roles and relationships, the stories came gushing out.

Three major themes emerged: inequitable division of tasks, ideal versus reality,and interconnectedness (growth and challenges in relationships). Real life obstacles get in the way, and families do the best they can, but a lack of communication among siblings creates a lot of negative experiences, Halliwell found.

Like Vivian, many primary caretakers expressed disappointment with siblings because they thought they could depend on them more. On the flip side, less-involved siblings resented their brothers’ and sisters’ lack of appreciation for what they did contribute.

Some described tumultuous, declining relationships between themselves and their siblings, while others refashioned the dynamics into something more positive. One participant likened her family to “a flock of birds flying in a V formation” which not only saves energy and increases efficiency, but allows for the one in front to drop back when tired and for another to take the lead.

Caring as a Team

That’s similar to the relationship Barbara Glickstein has with one of her brothers. She says they’re a team who “have each other’s backs” as caregivers for their 92-year-old mother, who has dementia. Their mother is in assisted living, but Glickstein and her brother visit often. They also handle the finances, consult with staff and aides and take her to appointments and on outings.

“When one of us is busy with family stuff or on vacation, the other just steps in,” she says.

Their sister lives out of state and is in touch by phone, but only visits sporadically. “She’s got a family and it’s impractical for her to help; she’s got her own issues,” Glickstein explains. Another brother lives nearby and visits socially, but does no other caregiving, she says. “I don’t rely on him for anything.” She points out that the current relationships mirror the family dynamics while growing up.

Talk Early

Families should have conversations about caring for parents sooner rather than later, Halliwell says. Don’t wait until there’s a crisis like a heart attack or a fall to suddenly be thrust into a caregiving role, she advises. That’s often when unpleasant things are said and feelings are hurt.

If you’re already a caregiver, she suggests:

* Talking with your siblings and painting a clear picture. Let them know you need help managing if you’re the main person, or that you need a break and that someone else needs to step up.

* Being understanding of each sibling’s unique demands and schedules, their strengths and limitations. Many conflicts arise because siblings don’t take on the perspectives of their brothers or sisters.

* Being open and communicating what you can and can’t do, or where you feel you can best help. For instance, you might offer to help manage finances or deal with insurance if you have the expertise.

* Writing down your thoughts and stories, especially if you normally confide in a sibling and feel you can’t. It will help alleviate some of your frustrations.

* Taking time to care for yourself. Eat right, get enough rest, take a walk, go to a movie or go out with friends regularly.

* Communicating with your siblings if you’re not happy with your role or responsibilities. Don’t let resentment or anger build up.

“Whatever you can do will be helpful and beneficial,” Halliwell says. “Don’t put so much pressure on yourself to have that perfect, ideal caregiver scenario we see in pictures and movies.”

Be realistic and don’t just tell yourself stories to rationalize another’s behavior. Remember: your well-being is at stake, too.

© Twin Cities Public Television – 2017. All rights reserved.

“Where Is the Line Between Caregiver Stress and Burnout?”

This is one of the best articles I’ve read on the line between caregiver stress and caregiver burnout.  And it’s short!  The author is Carol Bradley Bursack, author of “Minding Our Elders” (www.mindingourelders.com).

Here’s a key excerpt:  “Being a caregiver for someone we love can be an honor, but letting caregiving become our whole life is unhealthy over the long term. Balance is the key to surviving and even thriving as we care for our loved ones. Taking steps to limit stress can help us find that balance.”

The article addresses how to recognize when we may be crossing the line burnout:

* “We ask ourselves about our attitude toward our care receiver.”

* “[We] listen to our friends or others who care about us.”

* “We ask ourselves if we can occasionally feel happiness and/or joy.”

The article also describes how to avoid burnout and how to take better care of ourselves as caregivers.

Here’s a link to the article:  (Note that there are ads on the webpage.)

www.healthcentral.com/article/where-is-the-line-between-caregiver-stress-and-burnout

Where Is the Line Between Caregiver Stress and Burnout?
Carol Bradley Bursack / @mindingourelder, Health Guide
Health Central
Published On: Apr 10th 2013

Those with neurological disorder have suggestions for family and friends

Though this blog post is written by people with Lewy Body Dementia, very little of this is specific to LBD, which is why I’m sharing it on our blog. Whenever you read “LBD” or “Lewy body dementia,” just replace it with the disorder you are dealing.

Last year, an Ann Arbor support group for those with an LBD diagnosis created a list of things to keep in mind when you have a family member or friend with LBD.  These are suggestions of what families and friends “can do and don’t do.”  The list includes items such as:

* give me some slack
* don’t hover
* let me make a mistake

The list is posted to the University of Michigan Health Blogs.  I’ve copied most of the blog post below.

Robin

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uofmhealthblogs.org/neurohealth/when-someone-you-have-has-lewy-body-dementia/28231/

When you love someone with Lewy Body Dementia
Suggestions for family and friends from people with LBD
Posted by Members of the Ann Arbor Support Group on April 22, 2016
University of Michigan Health Blogs

Lewy Body Dementia (LBD) is a disease that affects a person’s thinking and motor skills. Due to the illness, people with LBD may behave in ways that are different than the past. LBD causes people to absorb information more slowly, have problems with balance, have difficulty handling things, experience hallucinations and sleep more, among other symptoms.

It can be hard for friends and family to understand how someone with LBD feels—and even harder to know what to say or do. Members of the Ann Arbor Support Group for those with LBD have put together some suggestions.

I have Lewy Body Dementia (LBD). Please . . .

Give me some slack. It takes me a little longer to do things because my brain works more slowly, but I’ll get there. Just give me time.

Don’t hover. It’s annoying and sometimes it makes me nervous. You probably wouldn’t like someone hovering over you constantly.

Let me make the mistake—don’t do it for me. I’m sure you want to help, but it can feel demeaning to be treated as though I’m incapable of doing things for myself.

Continue to treat me like I’m part of the family. My illness is not contagious and I still care for you as much as ever. Invite me to things and if I don’t feel like going, I’ll let you know.

Don’t make assumptions—ask me. For example, just because I was tired one day doesn’t mean I’m always too tired to do something. Please don’t think for me—ask me.

Be patient when we’re talking. Sometimes I lose my train of thought, but give me a chance. My thought will come back around.

If you can’t hear me, ask me to speak up. I’m not always aware that my voice may have grown softer. If you don’t tell me, I don’t know you can’t hear me.

Don’t talk about me as though I’m not there. My thinking may be affected but I can still hear. Would you like to be treated as though you didn’t exist?

Remember that the time of day and medications can affect my energy and alertness. Sometimes my meds—and when I’ve taken them—can really impact how “with it” I appear. The effects are as unpredictable to me as they are to you.

A few of the things we appreciate

This list wouldn’t be complete if it only focused on what not to do. Group members recognize how much love and support their family and friends give them. Here are some of the things we appreciate.

I like it when . . .

You help with my medications. I appreciate your helping me stay healthy by organizing my meds and giving me reminders.

You go to doctors’ appointments with me. It’s good to have another set of ears taking in the information and advocating on my behalf.

We’re working as a team. This disease is affecting you as well as me and it’s good to feel that we’re dealing with it together.

You research helpful LBD information and resources. I appreciate the effort you put into looking for new information that can help us deal with this disease.

A final note for caregivers

Be sure to take care of yourselves. It’s great you’re concerned about me, but if you wear yourself out, how will you be able to help me? Remember, we’re in this together.

This list is not comprehensive

It simply reflects the thoughts of the members of the Ann Arbor Support Group. If you are not sure what is helpful, ask your loved one. And keep in mind that things are likely to change as the disease progresses. Use this document to start a conversation with your LBD “teammate.”

Note: This information was created by people with Lewy Body Dementia (LBD) who attend a support group just for them while their care partners meet in another room.