This article about the “language” of the author’s husband’s Parkinson’s Disease. It may resonate with some of you. See:
https://folks.pillpack.com/learning-the-language-of-my-husbands-parkinsons/
Learning The Language Of My Husband’s Parkinson’s
I’ve immersed myself in a new language three times out of love for my husband, but Parkinson’s has been the most challenging.
Folks
Annie Ruth Abbott
January 10, 2020
Robin
Courtney Lewis, a speech pathologist in Australia, spoke recently to the FTD (frontotemporal degeneration) support group in Hawthorn. She addressed swallowing, eating/chewing, oral behaviors (common in the behavioral variant of frontotemporal dementia), taste/smell, and taking medication. Helpful notes from the meeting were taken by Wendy Kelso. I read these notes on the FTD Support Forum, posted by online friend Glen, whose late wife had semantic dementia. Wendy has given permission for these notes to be shared.
Note: I’ve left in all the Australian spellings and terminology (eg, “swallowing tablets” for “swallowing medication”).
Robin
———————————————
Summary of Discussion with Courtney Lewis, Speech Pathologist
FTD Support Group, Dementia Australia Hawthorn
1st November 2019
Minutes: Wendy Kelso
SWALLOWING
– Swallowing is a highly complex activity that requires planning and co-ordination of a number of brain regions
– Controlled by motor cortex – muscles/movement
– Orbitofrontal cortex – behaviour
– Precentral gyrus – voluntary initiation of the swallow reflex
– Brain stem – cranial nerves
– When you swallow, the airways are closed to prevent food going down
the wrong way
– If the windpipe does not properly close off, or if swallowing is not well coordinated, choking can occur
– Aspiration pneumonia can occur if food enters the lungs
– Malnutrition and dehydration may occur as a result of swallowing difficulties
To help the swallowing reflex:
– Verbal instructions usually don’t work – better to use tactile (touch) cues to swallow
– Tap or stroke the persons chin or cheek gently to encourage swallowing
– Take little sips of water when the person has the sensation in their mouth
– Put a cold spoon on their lips to open the mouth to allow them to be fed
– Sometimes people have forgotten what to do next after chewing and need prompting to swallow
– Try and provide food that needs less chewing – steak/tough meat requires too much chewing and is effortful to swallow
– If the mouth is overfull, this affects swallowing
– Try and encourage smaller mouthfuls of food to assist swallowing
EATING/CHEWING
– Brain changes in FTD cause changes in eating, drinking, chewing and swallowing behaviour
– Many people consume food and drink to excess and cannot control their food intake
– They may consume large quantities of sweet foods, sweet drinks and/or alcohol and cigarettes
– They may eat items that are unpleasant or non-food items, such as soap
– Sweets have a high reward centre in the brain – quickly sends pleasure information to the brain
– If the person doesn’t chew their food, it usually reflects frontal/behavioural changes rather than a problem with swallowing
Eating Tips:
– Change the environment – reduce the volume of food/drink and the number of options
– Provide healthy food options in portion controlled sizes
– Never have a buffet meal if the person overeats and cannot monitor their food intake
– Use smaller spoons, plates, cups and wine glasses
– Routine helps – regular meal times in the same place using the same cutlery and crockery. This helps the person recognise it is meal time
– Using hands to eat and finger food is fine – it can assist people to remain independent at feeding for longer
– Changing the temperature and texture can assist the food to go down
– Soup can make the food more moist
– Some people will require 1:1 supervision with meal times to assist the process and ensure safety
– Chewing requires a lot of effort – it is a form of exercise
– Sometimes people become breathless when chewing and this can lead to aspiration
– Fatigue affects chewing and swallowing
ORAL BEHAVIOURS
– Common behaviours include lip smacking, lip chewing and tongue clicking
– Strategies can include sucking or biting items such as a soft piece of fabric or using ‘chewy tubes’
– Chewy tubes are highly tactile and can be in the form of a necklace or bracelet
– If the person licks their lips, try using lip balms or chapsticks
– If the person tongue clicks or thrusts, try and reduce the sound
– If the person is a smoker, this can leave their mouth feeling very dry and they can exhibit a variety of oral behaviours
– Try and encourage sips of water
TASTE AND SMELL
– Changes to taste and smell are caused by changes in the frontal and temporal lobes in the brain
– These changes are very common in bvFTD
– The olfactory bulb (smell) is usually working but the information is not being relayed back to the other areas of the brain that control smell
– Sweet foods are highly desirable as they have a stronger more pleasant taste and have a high reward and value system in the brain
– People with FTD find it difficult to process sour/bitter and disgusting foods
– As an example, broccoli and cauliflower have a ‘negative’ taste, so is less palatable than ice cream to the person with FTD
SWALLOWING TABLETS
– Sometimes swallowing tablets with ice-cream, yoghurt or custard can help
– Many people will find it very hard to swallow tablets with water/liquid
– Swallowing tablets with water is a complex multi-step task and requires more co-ordination
This is a good article in today’s Next Avenue (nextavenue.org) about the risks of becoming isolated as a caregiver:
Three caregivers’ stories, and advice on possible solutions
By George Lorenzo
November 21, 2019
Next Avenue
www.nextavenue.org/caregiver-avoid-isolation/
Copied below is an excerpt from the section on avoiding self-inflicted isolation.
Robin
————————————
Excerpt from:
Yet, despite all the services and support groups available, it is not uncommon for caregivers to avoid them and self-isolate. “Some of it [isolation and loneliness] might be self-imposed, because you do not want to impose on other people. I feel a huge responsibility for my mom and I don’t always trust people to take over for me,” Bagley says.
“The isolation is not like a desert island, but you can isolate yourself,” Danielson explains. “I have talked to people when I go to the day care center. Some of them are really distraught. Some of them don’t know what to do. It’s a difficult life, but I don’t want anybody to feel sorry for me. In many ways, it is a privilege to be able to take care of someone you love.”
Enter Peter Rosenberger, the passionate, highly empathetic and straight-shooting radio show host of Hope for the Caregiver, broadcast twice weekly nationwide on American Family Radio and Family Talk on Sirius XM-131.
Caregivers can call in to talk about their experiences and get advice from Rosenberger, who has been the primary caregiver for his wife, Gracie, for more than 30 years. Rosenberger is also author of a book of the same name as his radio show, and, most recently, a second book titled 7 Caregiver Landmines and How You Can Avoid Them.
For landmine No. 2, solitude, he offers several steps caregivers can take immediately: “Serving as a caregiver is simply too difficult to do alone,” he explains.
In addition to getting counseling from a mental health expert and participating in a support group, Rosenberger suggests that caregivers call three people they can trust and talk with them without going into a deep conversation. “Just ‘sip’ the friendship slowly,” he says.
Help for Seniors (help4srs.org) is a Southern California-based organization. They published a list back in 2010 of 42 things to do when a loved one dies.
The organization recently published a specialized list of 46 things to do when your spouse dies. See:
When Your Spouse Dies
Help for Seniors
November 2019
The second page of the document includes a list of documents and information you’ll need.
We have posted three other lists.
Robin
Recently, Janet Edmunson (janetedmunson.com) presented a webinar on self-compassion for caregivers. Our friends at Stanford’s Parkinson’s Community Outreach program took notes. Denise Dagan reports:
In the webinar, Janet relied heavily on Dr. Kristin Neff’s book, “The Mindful Self-Compassion Workbook.”
Essentially, Janet shared that it is a common experience to be our own harshest critic. We may chastise ourselves for losing patience with our loved one, yet tell a fellow support group member that everyone loses their temper sometimes.
Being overly critical increases caregiver stress, depression and anxiety, while self-compassion decreases caregiver stress and, thereby, improves mood, energy, overall health and wellbeing.
Dr. Neff’s book suggests that we can change our habit of being overly critical with ourselves by being mindful of overly critical behavior and replacing that behavior with self-compassion.
Check out the Center for Mindful Self-Compassion’s self evaluation test:
centerformsc.org/learn-msc/take-the-self-compassion-test
Janet also shared a few strategies and practices to increase self-compassion. My detailed notes are below.
– Denise
=========================================================
Self-Compassion for Caregivers
November 7, 2019
Webinar Presenter: Janet Edmunson
Janet Edmunson has a masters in education and 30 years in the health education field. She cared for husband, Charles, with corticobasal degeneration (CBD), a Parkinson’s Plus disorder. She is on the board of directors for CurePSP and is an online support group moderator. She lives in South Portland, ME.
She credits Kristin Neff, PhD. This webinar is based on her book, “The Mindful Self-Compassion Workbook.”
PRESENTATION
How tough are you on yourself when something goes wrong or you aren’t at your best? This is common, especially among caregivers.
One experience of this Janet experienced was when she shared his diagnosis with her friends, against his will. She needed support, but it angered Charles that she divulged what he wanted to keep secret longer. His fury brought up feelings in Janet of self doubt and shame, even though she knew she needed her friend’s support. She thought she might have gone about getting support in another way.
Think about what the experience of compassion feels like? Think of when someone was compassionate with you told you that we all makes mistakes? We don’t always have someone there to support us, so we need to learn to comfort ourselves.
Self-compassion involves treating ourselves with care and concern when evaluating our behavior, comments and responses – just like others would have compassion and forgive our mistakes.
When we think of having compassion for others we put ourselves in their shoes and respond to them with empathy, understanding, kindness and forgiveness rather than harsh judgement. Why is it so hard to do that for ourselves?
What self-compassion is NOT:
* Self pity
* Self criticism – it is realistic, reasonable self criticism, not overly harsh.
* Self indulgent
* Self esteem
It is being kind to ourselves, as we would be kind to others.
Benefits of self-compassion:
* Decrease anxiety and depression
* Ease body’s threat response
* Bolster immune system
* Ease body’s stress response
* High levels of well being and energy
* Better mental health
Allows us to be happier and more satisfied with our situation
Allows us to be resilient and able to withstand challenges fo caregiving.
Study of U.S. Veterans: Self-reported baseline of self-compassion and again after six months. Vets who were more compassionate with themselves experienced less severe PTSD symptoms, even after combat experience.
Give yourself self-compassion when you:
* Have a difficult time
* Fail
* Notice something you don’t like about yourself
3 Components of Self-Compassion
* Kindness – vs – overly self critical
* Common Humanity – vs – Expected perfection
* Mindfulness – vs – over identification
Self Kindness is to be caring and understanding with ourselves rather than overly self critical. The offering of warmth and acceptance. We are not ignoring our pain and are being realistic, but not overly harsh.
Common Humanity recognizes humans are imperfect. Everyone makes mistakes. All humans suffer and are vulnerable. It is normal in life for things to go wrong. We are not alone and do not need to take our failings too personally. We can acknowledge our mistakes with understanding and forgiveness.
Mindfulness is being aware of one’s painful experiences that neither ignores, nor amplifies our painful experiences. We recognize the care we need to give ourselves and are aware of our feelings as they are (realistically). Mindfulness acknowledges and validates what IS, here and now, even when one is suffering. We can sit with suffering rather than move directly into problem solving mode.
Self-Compassion Test:
https://centerformsc.org/learn-msc/take-the-self-compassion-test
Examples of low self-compassion:
* I’m disapproving and judgmental about my own flaws and inadequacies
* When I’m feeling down I tend to obsess and fixate on everything that’s wrong
* When times are really difficult, I tend to be tough on myself
Examples of high self-compassion:
* I try to be loving towards myself when I’m feeling emotional pain
* When things are going badly for me, I see the difficulties as part of life that everyone goes through
* When I’m feeling down I try to approach my feelings with curiosity and openness
“Self-Compassion is a practice of goodwill, not good feelings.” – Kristin Neff, PhD
While we are trying to alleviate suffering we are not trying to replace those with good feelings, but to sit with those feelings. One may actually feel worse before feeling better. Meet worse feelings with compassion. Acknowledge the difficulty and ask yourself how you can be compassionate with yourself in that moment when emotions are at their lowest.
STRATEGIES AND PRACTICES
Relate differently to your inner critic! Think of a time when you were critical of yourself (e.g. losing your temper with your loved one). How were you thinking of your behavior at the time? Were you harsh with yourself? Did you feel hurt and unsupported? Put yourself in the role of a wise counselor. What would they say to you in that incidence? Would they be as harsh or more forgiving?
Take Self-Compassion Breaks. You can take a mental break any time. During the break think of ways you have been overly critical or overly harsh with yourself. Give yourself some self-compassion instead of those harsh words.
Exercise: What you would say to a friend —
* Write down something you criticized yourself harshly about.
* Walk away for a moment
* Read it and imagine that your best friend had written it
* Speak out loud what you would say to that person
* Absorb those kind words for yourself.
Exercise: Write yourself a letter —
* Write a letter to yourself in the voice of a compassionate friend, family member or your compassionate self.
* Mail it to yourself and re-read it when it arrives. Or hang onto it and take it out after some time.
* When you re-read the letter. Use it as a gauge of whether you are getting better at self-compassion.
Exercise: Keep a journal.
* Write through the lens of self compassion, being gentle with yourself and encouraging. Re-read older entries and evaluate whether your self-compassion is improving.
“In self-compassion, we hold ourselves with love – validating, soothing, and comforting our pain so that we can ‘be’ with it without being consumed by it.” – Kristin Neff, PhD
Your Action Plan. What ritual or exercise will you adopt to give yourself more self-compassion?
“If you want others to be happy, practice compassion. If you want to be happy, practice compassion.” – Dalai Lama
QUESTIONS AND ANSWERS
Q. How do we explain to our loved ones about caring for ourselves?
A. You have no responsibility to explain that to anyone. You just need to take the time for yourself, even if it is just setting up a chair in the yard or garage or locking yourself in the bathroom for a few, just to collect yourself and take time to offer yourself a break and self compassion. Seek out friends and family for the compassion that you need. This is especially important when caring for someone with dementia who can no longer comprehend.
Q. I have PSP and need help from my caregiver, but she sometimes yells at me and tells me I don’t know what I’m doing. I am learning.
A. Try to find someone else to care for you. Talk with her about how she is talking to you disrespectfully. Tell her to ask if you want her help. Every time she begins to speak to you disrespectfully, interrupt her and remind her you want her to speak to you kindly.
Q. I’m afraid of hurting others by sharing my pain.
A. With self-compassion you are not sharing your pain. You are speaking to yourself in a kind way you would speak to someone else. So, you are not burdening others. If you have a good friend or family member, you might ask them if you can share some of the most difficult things you cope with. People want to show compassion for you.
Q. When someone pitches in to give me a break, it is hard not to micromanage them. I feel guilty for stepping back and bad about telling the helper they’re not doing things right.
A. This is a common experience. I remember, no matter how I explained that exercises for my husband needed to be done slowly, the morning caregiver always did them too fast. I had to accept that I needed to hold my tongue unless Charles was saying, “Ouch.” Sometimes, a new caregiver will show you tips and tricks you will find very useful and adopt in your own caregiving. Try to speak up just when something is really important, but if the way the helper is doing something is just not the way you would do it, hold your comments and take time for yourself. The problem with micromanaging caregivers is that they will learn not to take any initiative in your home. When that happens you don’t learn any tips and tricks from them and they don’t help you as much as they might.
