Category Archives: Caregiving – General

Excerpt on acceptance/denial in “Finding Meaning with Charles”

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Excerpt on acceptance/denial in “Finding Meaning with Charles”

Janet Edmunson, author of the book Finding Meaning with Charles, has given permission to share an excerpt on acceptance and denial.  The “Charles” in the book’s title is Janet’s late husband.  He was diagnosed during life with progressive supranuclear palsy, and with corticobasal degeneration upon death.  We have many copies of the wonderful book to share within our local support group.

Though the book is primarily for caregivers, I think those with a neurological diagnosis can find great benefit from it.  And the book has very few PSP-specific or CBD-specific details so it can be appreciated by everyone.

Check out Janet’s website (janetedmunson.com) at for details on her occasional webinars for caregivers and for her “positive affirmations” emails.  Her book can be purchased at Amazon.com.

Excerpts are below.
Robin
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Excerpt from

Finding Meaning with Charles
by Janet Edmunson
Available in paperback, audiobook and e-book formats on Amazon.com

It wasn’t until about the third year of Charles’s disease that the Serenity Prayer had its greatest impact on me. But I have always loved it, and it means the most to me when I am going through tough times: “ . . . grant me the serenity to accept the things I cannot change, courage to change the things I can, and wisdom to know the difference.”

I have really latched onto the concept of “accepting the things I cannot change.” Though we tried to fight it, Charles’s disease was going to take away his abilities, and eventually, his life. Our choice was to accept that or deny it.

I don’t know for sure what Charles’s choice was. He was determined not to let the disease change his life and goals. He tried hard to keep contributing as best he could. That was how Charles tackled everything in life. He denied the obstacle and set out to conquer it. He wouldn’t succumb. He fought all the way to the end.

Is that acceptance or denial?

I, however, consciously chose to accept it and make the most of it.

My greatest learning through this experience came when Charles and I attended the Mind/Body Medical Institute program which, at the time, was held at Beth Israel Deaconess Hospital in Boston. The instructor, Peg, talked about acceptance, explaining that the way to accept the things that we have no control over, such as an illness, is to make meaning out of it. Wow! Make meaning out of it! Her explanation suddenly allowed me to consciously look at what Charles and I were going through and identify where it helped us grow and where it allowed us to have an impact on others that we wouldn’t have had without the adversity of his disease.

Taking a proactive approach to making meaning out of our situation helped me to positively focus on the opportunities and not plunge into depression. I was determined to help Charles reach whatever potential his life could give. And I was amazed to see how Charles became even more influential – even after he could no longer talk. As a caregiver, I found it important to focus on this greater purpose. My goal for caregiving went beyond making sure Charles was safe and physically cared for. I wanted to ensure that he still lived life to the fullest whatever degree the disease would allow.

Accepting Charles’s disease and making meaning out of it didn’t mean that we didn’t feel pain. Coping with this type of degeneration was difficult physically and emotionally for Charles, the person with the disease, as well as for me, the caregiver. We faced many trials – some successfully, others not. But we both became better people through experiencing his disease.

Scott Peck starts his book, The Road Less Traveled, with the sentence “Life is difficult.” He goes on to explain that once we accept this, we can begin to make the most of life. Charles and I had discussed this concept a number of times when we faced problems at work or with other people. The misfortune of his disease forced us to face our greatest life difficulty, truly testing our ability to accept adversity and then move on.

I don’t know of anyone who expressed this thought better than Viktor Frankl in his book, Man’s Search for Meaning. Frankl survived the atrocities and indignities of a concentration camp in World War II.

He realized there that to renew our inner strength, we need to have a future goal. He quoted Nietzsche’s words, “He who has a why to live for can bear with almost any how.” I found that “finding meaning” is a way to define the why. The act of looking for and finding meaning in Charles’s disease focused and empowered me.

Advice for caregivers and those with Parkinson’s from Connie Carpenter Phinney

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Advice for caregivers and those with Parkinson’s from Connie Carpenter Phinney

The Parkinson Voice Project (parkinsonvoiceproject.org) has hosted a few webinars on various aspects of Parkinson’s Disease this year.  In November 2017, they held a 90-minute webinar with Connie Carpenter Phinney, former championship speed cycler and co-founder of the Davis Phinney Foundation.  The topic was the importance of building a productive care team.  Much of the webinar is applicable to non-Parkinson’s situations.  Though most of the ideas were focused on the person with a diagnosis, many aspects of the talk were applicable to caregivers.

You can find the recording here:

www.parkinsonvoiceproject.org/ShowContent.aspx?i=1844

For me, these were the highlights of Connie Carpenter Phinney’s talk that applied to both caregivers and care recipients:

* Stay social!  Lack of socialization is as bad for your health as smoking two packs of cigarettes daily.

* Get HIPAA release forms signed so family can communicate with all doctors.

* Designate your healthcare power-of-attorney to make decisions about your healthcare when you can’t.

* Set up your support team.  (This is true for caregivers and care recipients.)  You can start small — family, one friend you rely on, one doctor you trust, and one other person coping with the same diagnosis.  You will need more support than your family.  Put your friends to work whenever they offer.  Others coping with the same diagnosis understand your challenges and have information about resources, symptoms, tips, and tricks.

Here’s what Connie said about caregiving:

– You didn’t ask for it.  Neither did the person with Parkinson’s.
– You’re not alone, but it might feel like you are.
– You can do this, though you may feel like you can’t.
– It’s okay to dislike PD.  Avoid disliking the person with Parkinson’s.
– Teach your person with Parkinson’s to accept help from those other than their primary caregiver so that you won’t burn out.

And here’s Connie’s key advice to those with Parkinson’s:

– Avoid resentment.  It is negative and it will not serve you.
– Mind your manners.  Apologize if/when you lose your temper.
– Give praise.  Thank your caregivers.
– Accept help when you have Parkinson’s.
– Reward with smiles.  Smiling is good practice and good medicine.
– Move.  Get outside.  Exercise keeps you moving when you have Parkinson’s.  Sunlight helps you sleep.

As is customary(!), Brain Support Network volunteer Denise Dagan listened to the entire webinar and shared her notes.  See below.

Robin
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Notes from Denise Dagan, Brain Support Network Volunteer

Strategies for Building Your Care Team to Live Well with Parkinson’s
Speaker:  Connie Carpenter Phinney
Webinar Host:  Parkinson Voice Project
November 11, 2017

As you age you start living more in the present and the past, and not in the future.  Without a goal there is no future.  With Parkinson’s you don’t know what the future holds so you become content with the present.

Connie grew up in a home with her mom having chronic MS, three rambunctious sons and Connie as her only daughter.  Connie and her husband, Davis, who has Parkinson’s disease, learned a lot from caring for Connie’s mother and Connie’s Olympic training, that they apply to their Parkinson’s journey.
– Be flexible. Take things as they come.
– Live in the moment.
– Focus on you and continue trying to improve.

Who carries you, as the caregiver?  Who’s looking after you?  Are you looking after yourself?  In this journey you need to learn to ask for help.

The thing(s) about caregiving.
– It is not called caretaking.  It is not just one person giving and the other taking.
– Caregiving is a journey on a two way street.  It’s a long journey.
– It’s fair to ask, who cares for me?  It may take some work to figure out who cares for you.  Your person with Parkinson’s needs to care for their caregiver or make sure their caregiver takes care of themselves.
– Doctors as caregivers.  What?!  Connie never thought of the physicians in the equation as being caregivers, but it is a team.  Think about who’s on the team.  You want your primary doctor to view themselves as a caregiver and as part of the team.
– One caregiver told Connie that being a caregiver was the toughest job he had ever done and he had been a Navy Seal.
– According to a government survey, 60 million Americans consider themselves to be caregivers.
– We ALL care.  It is not a one-way street.  Connie prefers to see herself as a care partner.  She gives care but also expects care.

Harness your caregiving superpower.  Get out.  Do what you love.  Reduce stress.  Most caregivers identify to some degree with having some angel wings and a halo (occasionally tarnished).  Parkinson’s asks caregivers to slow down and be more forgiving, magnanimous, patient.

What I know:
– You didn’t ask for it.  Neither did the person with Parkinson’s.
– You’re not alone, but it might feel like it.
– You can do this, though you may feel like you can’t.
– It’s okay to dislike PD, avoid disliking the person with Parkinson’s.

What we know about Parkinson’s Disease.  It’s not just neuroscience.
– It can turn your world upside down.
– It’s 24/7.  A friend of Connie’s with PD doesn’t like to blame every outburst on PD, but it pervades every moment.  Connie gave him permission to, “pull the Parkinson’s card,” because PD is an unpredictable 24/7 thing.  He needs to apologize and do his best to keep it together, but he should cut himself a break.
– PD involves daily concessions most people don’t have to make.  Slip on -vs- tie shoes.  Button down shirts take a lot longer.  Having to allow much more time for things, or always running late.
– It rarely ‘plays nice.’  Just when you need to be somewhere you have symptoms that get in the way of your attending or making it to the event on time.
– It’s as unpredictable as it is complicated.  There are similarities between people w/PD, but many differences, too.
– Tremor is the tip of the iceberg.  People outside the Parkinson’s community don’t understand that non-motor symptoms are part of the equation (constipation, incontinence, pain, vision problems, sleep issues, etc.)  Even facial masking and the social consequences.  People think you’re not paying attention, stupid, or drunk.

Notes for the person with Parkinson’s:
– Avoid resentment.  It is negative and it will not serve you.
– Mind your manners.  Apologize if/when you lose your temper.
– Give praise.  Thank your caregivers.
– Accept help when you have Parkinson’s.  Teach your person with Parkinson’s to accept help from those other than their primary caregiver, to prevent that care partner from burning out and compromising their health.
– Reward with smiles.  Smiling is good practice and good medicine.  It moves your facial muscles!
– Move.  Get outside.  Exercise keeps you moving when you have Parkinson’s.  Sunlight helps you sleep.

Notes for the Parkinson’s caregiver:
– Patience.  Infinite patience.
– Re-Set.  (You might need a do-over to re-set the rules of engagement.)  The way you have interacted before in your relationship may no longer work now that Parkinson’s is a factor.  You may not be communicating well together since Parkinson’s entered the picture and you need to find a better way to work together.  Try to get to a place where you don’t have to apologize, but you do anyway.
– Choose to keep it positive and upbeat.
– Stay social.  Lack of socialization is as bad for your health as smoking 2 packs of cigarettes daily.
– Reminisce.  Looking back can help you look forward.  It’s good for your brain.
– Move.  Exercise.  Do what you enjoy that is active/physical.
– Be spontaneous and selfish once in awhile.  Connie took the opportunity to go see the total eclipse with her son at the last minute.  She found it so spectacular she vowed to take Davis with her next time.

The Rulebook (aka Game Changers):
1. Reboot, restart, rewrite your rule book.  Write it down and have a conversation with your partner about what’s working and what’s not for each of you.

2. Never let your person with Parkinson’s go to the doctor by themselves.  They aren’t very good advocates for themselves.  Even if you send them with a list they they don’t report back all the details.

3. Tape record the appointment because you each remember different comments the doctor made.  Taking notes distracts you.  Take notes from the recording so you have the important information handy.

4. Get to know your medical providers (neurologist/movement disorder specialist).  Connie recommends finding a movement disorder specialist and explained you really want a neurologist who specializes in movement disorders, even if it is only a once-in-awhile appointment to confer with your regular neurologist.  Your primary care physician (PCP) should be communicating with your neurologist/movement disorder specialist so your PCP is up to date on all the symptoms and treatments you have brought to the neurologist/movement disorder specialist.  You may have to insist that your PCP receive neurologist’s notes.  Once, when Davis’s regular movement disorder specialist was out of town and they had to see a different doctor, they gained a new perspective.  The new doctor gave them seven areas on which they could improve upon after 17 years with the disease and all their education about the disease.  They did a cognitive evaluation so they would have a baseline for Davis’s degree of dementia.  Much of the cognitive issues in Parkinson’s have more to do with the slowing of processing speed, which is what they found with Davis, but now they have the baseline to compare to over time.

5. Don’t be afraid to challenge and change.  Challenge what you’ve been doing.  You don’t get better by doing the same thing.  You can only improve by challenging yourself.  If you cycle, add some weight training, voice training, etc. to keep up with the pace of the degeneration of Parkinson’s.  You can get function back, but you have to really work at it.

6. Inform yourself about side effects of medicines vs. symptoms of disease.  Understand the side effects of medicines and how they affect behaviors vs. behaviors affiliated with the disease.  The caregiver needs to understand what to look for as far as aberrant behaviors.  Some people take up gambling, for example.  That can be a side effect of medications so telling your doctor and adjusting dosages or prescriptions will solve the problem.  Feel comfortable communicating with your Drs.

7. Safety first.  There is balance between minimizing the chance of falling vs. getting enough movement to keep moving.  Pain killers/opiods to treat an injury from falling can result in even more injury from falling due to dizziness.
Some things you need to draw a line in the sand and say, “No more,” like ladders, shower curbs, etc.
Install grab bars, ramps, etc. before you need them.

Rulebook Essentials:
1. Driving – No attendees had been tested to see if they are still okay to be driving, but several admitted feeling uncomfortable being a passenger while their family member with Parkinson’s.  Occupational therapy evaluation will test you to see if you are okay to be driving.  It is part cognitive, part reflex/skills based.  It is not cheap but it is less expensive than it can be if your person with Parkinson’s has an accident and the person they hit finds out they have Parkinson’s and are not fit to drive.  If you are okay to drive, you need to keep driving because lack of practice means losing skill week over week.

2. Disabled parking pass.  Not to be close to the store, but to have more door swing to get in/out of the car.

3. Sleeping arrangements.  REM Sleep Behavior Disorder (RBD) is when someone acts out their dreams.  It is very disruptive and can be injurious to a co-sleeper.  Best to have twin beds in the same room if you sleep with someone who has RBD.

4. Household safety.  The person with Parkinson’s should help around the house as much as possible.  Mobility and manual dexterity, cognitive skills.  If you don’t use it, you lose it – BUT – no ladders, cleaning gutters, and other activities dangerous to someone with gait/balance issues.

5. Understand the benefits, timing and side effects of medicines, especially if you change dosing.  Taking meds on time is incredibly important.  Be sure it is happening if symptoms are fluctuating, even if they set an alarm on their phone, because they could be forgetting what the alarm is for or sleep/snooze the alarm, then forget about it.  You could end up with too high a dose complaining about symptoms that could be due to inconsistent medication use.
Also be sure to order/refill meds prior to running out to reduce stress/hassle.

Don’t wait!!!
– Learn to ask for help.  Groceries, sweep the floor or walkway, any little thing is helpful.
– Learn to accept help.  Most of the people the Phinneys find helpful now, didn’t know them before PD.
– Teach your person with Parkinson’s to accept help early on so later they are willing to accept help.
– Don’t wait until you feel exhausted.

For all y’all:
– Be informed.  Don’t overrule your doctor, but understand why they are recommending x, y, or z.
– Avoid isolation.  Embrace the Parkinson’s community.  They will serve you well.
– Choose optimism.  It is your best friend during difficult days.
– Seek contentment.  Be satisfied with what you’ve got.  Stay off social media that looks like others are happier than you are.
– Humor heals.  It is distracting from your personal challenges.  Turn off the news.
– Keep the faith.  Whatever helps carry you from day-to-day.  Focus on happy.

Disability
It is important to consider when and how to apply for Social Security Disability.  If you are under 60 applying for Social Security Disability will fast track you onto Medicare.  Your first attempt at the paperwork will probably be rejected.  They usually come back and require more information.  Be persistent.

Dream Team
– Family First but you will need more
– Friends, especially those you meet after Parkinson’s diagnosis.  Old friends may be caught in old patterns and not know how to adapt and be helpful and supportive.  Don’t blame them for that, just seek new, supportive friends.
– Other people with Parkinson’s in their family.  They understand your challenges.  They have information, tips and tricks to share.
– Therapists – Physical, Occupational, Emotional therapists.  Connie recommends physical therapy regularly, especially with someone familiar with Parkinson’s.
– Physician(s) – PCP informed by your neurologist/movement disorder specialist.  Be sure the person with Parkinson’s signs a HIPAA release form so their family can communicate with all the doctors from the beginning.  You will also need to designate your healthcare Power-of-Attorney who can make decisions about your healthcare when you are unable to.

Start Small
– One friend you can rely on
– One doctor you trust
– Another person with Parkinson’s

Keep a Calendar
– Weekly classes
– Appointments
– Reminders for birthdays, weddings, trips, educational seminars
– Do what you love!  Connie paints, cycles, etc.

QUESTION AND ANSWER

Q. Does Davis still bike?
A. Yes. He uses an electric assisted bike to keep up with friends and family.  They also walk and Davis has joined a singing group.

Q. What are the 7 things the substitute neurologist recommended?
A. Take the driving evaluation, look at seeing an ENT about having collagen injections in the throat (they did have some success with this), botox for dystonia in one foot, medication changes, cognitive testing, weight training because Davis tends to falls backward but strength training may help that.
A. The Parkinson Voice Project doctor fully endorses getting different perspective in any area of life.

Q. How to go about seeing another doctor without making your regular doctor angry?
A. Explain to them you are trying to build a team and want them to communicate together.  Most doctors know people shop around, especially when they have a serious, long term illness.  May work best to have similar, but not the same specialties like neurologist & movement disorder specialist.

Q. How do you deal with Medicare says you can only have PT or other therapies for a limited time?
A. Every insurance company is like that.  Your doctor needs to continually support you and repeatedly prescribe it.  Try to find a physical therapist who knows about Parkinson’s and can be of the most help to you.
A. There is a Medicare Therapy Cap.  Parkinson Voice Project has raised $1M grant for physical therapy centers around the country to support expanding voice therapy for Parkinsons.

Q. How does Connie encourage Davis to do his PT without starting an argument?  Do you nag, or not?
A. In general that is where another person with Parkinson’s comes in handy.  When you sign up for something like Rock Steady Boxing with a group or friends, they can hold you accountable.  For typical PT like taking large steps, it helps to do it with them and try to make it fun and funny.  The exercise that works is the one that you’ll do!  Mix things up a bit so it is fun and not boring.  Until you meet someone who can no longer communicate, you don’t appreciate how important it is to keep working on speech.  Same with getting out of a chair.  Nagging never works.

Q. If you have a neurologist do they have a movement disorder specialist in their office for a consult?
A. No.  Usually, movement disorder specialists are in a group or specialty clinic.  Your neurologist may not recommend a movement disorder specialist, especially if you live in a rural area.
A. The speech therapist makes the analogy that her license allows her to treat a child, but she has 20 years experience with Parkinson’s, so she shouldn’t be treating children – but her license allows it.  Asking someone with Parkinson’s who they see can help you find the specialists you need.

Dealing with lack of motivation and helping someone accomplish tasks (with coaching)

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CareGiving.com runs a “Caregiving Podcast Network” on Blog Talk Radio. Every week, they host a 30-minute “FTD Chat” about various aspects of frontotemporal degeneration. (Both PSP and CBD are FTD disorders.) In a chat over the summer, guest speaker Geri Hall, PhD, ARNP, talked about motivating someone with FTD to do things and be less apathetic. As lack of motivation and apathy are issues in all of the disorders in our group, I thought the notes from this podcast were worth sharing with everyone. In addition, the focus of this podcast is helping someone with a neurological disorder do more for themselves, with coaching from the caregiver.

Denise Brown, founder of CareGiving.com, is host of the podcast. The expert speaker, Dr. Geri Hall, works at Banner Alzheimer’s Institute with families coping with all types of neurological disorders.

Brain Support Network volunteer Denise Dagan recently listened to the podcast. Denise has shared some overall insights. Note the two suggestions offered by Dr. Hall —
1- get the help of an occupational therapist
2- have your care receiver attend a day care program

In terms of overall insights, Denise Dagan says:

This 30-minute podcast is a very good talk about helping someone with a neurodegenerative disorder, who is having trouble accomplishing tasks, to be able to do more for themselves with coaching from their caregiver(s). Dr. Hall explains that people with neurodegenerative disorders do have goals. When their executive function process breaks down it prevents them from accomplishing those goals – or even starting them. This is especially true for those with dementia or advanced Parkinson’s disease. Dr. Hall emphasizes that people with executive function issues are not being lazy, willful, or manipulative. She gives specific suggestions for helping them to stay focused to complete each step of a task on the way to their goal. People with [neurological disorders] can suffer from apathy and/or depression, making some projects seem overwhelming. Breaking projects into separate tasks, even over several days, makes them more manageable and less exhausting.

If you have difficulty breaking down a task into its composite steps for your family member, Dr. Hall recommends having your neurologist write you a referral to an occupational therapist (OT) for “Functional assessment and task simplification techniques.” The OT will evaluate your care receiver to establish his/her skill level and teach you, the caregiver, how to break a task into an appropriate number of steps.

Both Dr. Hall and Denise Brown recommend having your care receiver attend an adult day program and pay attention to how they give instruction to the program attendees in a step-by-step fashion. Getting your care receiver used to this method of instruction both at home and at the day program brings continuity to their days. Having a routine both at a day program and home helps them anticipate what comes next.

Denise Dagan’s full notes from the podcast are below.

Robin

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www.blogtalkradio.com/caregiving/2017/08/24/talking-ftd-with-geri-motivating-persons-with-ftd

Notes by Denise Dagan, Brain Support Network Volunteer

Talking FTD with Geri: Motivating Person with FTD
Caregiving Podcast Network on Blog Talk Radio
August 24, 2017

Denise Brown is the host of this podcast. She has been having her own struggle motivating her husband. She recently put together that her husband is quite capable of participating in activities if she takes the time to instruct him step-by-step.

Denise’s expert guest, Geri Hall, PhD, begins by explaining how executive functioning is required to accomplish a task.

You must be able to:
– Set a goal
– Make a plan to accomplish the goal, and
– Be able to carry out the plan.

A person with executive function difficulties knows what they want to do.
– The more they think about it or concentrate on what’s involved in accomplishing the task, the less they are able to organize their thoughts and accomplish the task.
– They are not being willful or lazy or manipulative. Some days executive function may be better than others. Fatigue makes executive function much worse.
– Depending on the neurodegenerative disorder, they may or may not realize they have difficulty figuring out the proper order in which to do things.

A person with executive function difficulties may:
– Refuse to participate because they cannot immediately think how to get started. Don’t ask, “Do you want to…?” The answer will always be, “No.”

– Wander away in the middle – not because they lost interest or forgot what they were doing, but because they cannot think what to do next to accomplish the goal/task. Sometimes, if you touch their arm to distract them from their mental muddle, and give them the next step to continue toward their goal, they can complete the task at hand.

– Getting the steps mixed up or backward. Putting underwear on outside their outerwear, etc.

– Have difficulty maintaining attention or concentration.

To improve executive function and motivate participation in activities:
– Have a consistent schedule day-to-day. Even so, don’t expect them to be able to know what comes next.

– Use non-verbal prompting. They may not process complex sentences well. Aphasia = not being able to get the words out, but can also include not being able to process what’s being said to them.

— Listening to you splits their concentration from what they are trying to do (like shower), so hand them the soap, rather than tell them to pick it up.

— Trying to follow your instructions makes them think about the task. The more they think about it, the less they are able to finish the task.

– Have bright colored toothbrush, comb, cup, plate, etc. so your care recipient will gravitate toward them – and use them. [My mom liked purple! If it was purple, she would pick it… clothing, cake, toothbrush, comb, etc.]

– Post written instructions (on a white board). This may work early in the disease.

– Task simplification = break activities into steps your family member can follow. Take a bath may become: take off your clothes, use the toilet, turn on the water, get in the shower, etc. Or, you may have to break it down further: take off your shirt, take off your pants, take off your underwear… Have your neurologist write you a referral to an occupational therapist for “functional assessment and task simplification techniques” This teaches the caregiver how to break goals into the number of steps your care receiver needs.

– Get rid of distractions, like the TV. They cannot split their attention.

– Keep activities short in duration. Next time you ask them to participate, notice how long it is before they begin to lose eye contact and drift away from the activity. Keep future activities to just short of that time limit.

– The goal is to get the task done – not necessarily entirely independently.

It definitely can be frustrating. It is easier to just let them watch TV, but the reward is worth the effort because it gets your family member involved with life again. They only watch TV so much because nobody is helping them accomplish things by breaking down the task into each individual step.

Denise Brown was able to have her husband help bake blackberry cobbler by giving him one task at a time until he lost interest. Later she built raised beds for him to garden in because he used to love gardening. She goes out with him and gives him each task to accomplish planting, watering, etc. Then, they made eggplant parmesan together when he brought an eggplant in from his raised garden beds, and were able to enjoy the food together. See if you find joy in your loved one’s face when they are able to do something themselves, even with some assistance. It will warm your heart as a caregiver.

Dr. Geri Hall says to recognize as caregivers you have a lot on your plate and need to develop one way you reward yourself at the end of the day (wine, hot bath, etc. that you find relaxing) as a reward for a job well done in the overwhelming effort you make to engage your loved one in life.

Start with things that are over learned, bathing, eating, hobbies. Your care receiver will be able to participate easier doing these activities with help than doing something that’s totally new. Remember, if it doesn’t work, so what? Try something a bit different tomorrow.

Denise says having your family member go to an adult day program a few times a week helps them to be able to follow these step-by-step instructions at home because that is how the day programs get participation from the program attendees. If you can learn how instruction is presented to your care receiver most effectively, you will be more successful at giving instructions at home. Day programs also follow a routine every day, which helps your care receiver anticipate what comes next.

When your family member is at the day program, you have time for yourself. You should take the opportunity to relax and engage with others outside of caregiving conversation, rather than running errands or doing chores.

You will experience resistance from your care receiver to attending a day program, but if you are persistent and allow them some weeks to acclimate to the new place, people and routine, you may find they really enjoy it, eventually.

 

“An Open Letter from a Caregiver to the Diseases, Illnesses and Afflictions that Shake Our Lives”

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“An Open Letter from a Caregiver to the Diseases, Illnesses and Afflictions that Shake Our Lives”

This blog post is titled “An Open Letter from a Caregiver to the Diseases, Illnesses and Afflictions that Shake Our Lives.” The author is Mark Stolow, the CEO of Huddol, which is an organization “committed to helping every caregiver along the journey.”

Robin

www.huddol.com/Huddoling/an-open-letter-from-a-caregiver-to-the-diseases-illnesses-and-afflictions-that-shake-our-lives-dear-unexpected-pain-in-my-ass-you-re-not-what-i-imagined-and-you-re-not-what-i-asked-for-you-8t9f0s1e

An Open Letter from a Caregiver to the Diseases, Illnesses and Afflictions that Shake Our Lives
Mark Stolow
Huddoling
September 20, 2017

Dear Unexpected Pain in My Ass,

You’re not what I imagined and you’re not what I asked for. You can expect me to feel angry, disappointed, and wrestle with self-pity. It’s easy to blame you. But I’m learning that you’re just a catalyst, and I am the cause – I move my emotions.

You’re here and I’m trying to get used to that, but don’t expect me to welcome you with open arms. You didn’t think you could stomp on the portrait of my perfect life and have me just stand by idle. I’m shaken and stirred, but I’m not down and out.

You force me to look at my loved one in a way that challenges my ideas about love and relationships. I never back down from a challenge and ideas can change.

You make me feel vulnerable, stripped down, and even defenceless. But I’ll dig deep and find another gear. The callus from your wounds will be my armour, but it will never make me callous. It will never harden me.

My friends don’t understand you, which means they hardly understand me anymore. But I’ve met some other people along the way, some people who know you well. They’ll help me move through your unpredictable and wily ways.

Physicians deplore you so much, they hardly notice me. I’m okay being in the silent minority, walking quietly but carrying a big, life supporting stick.

Your habit of poking your nose into my life, my work, my family, my solitude, into every space that I live and breathe, is exhausting. But you can’t deflate my will or wreak havoc on my resolve. I’m like a finely tuned All-in-One – scanning, printing, copying, and faxing my way to making sure you go on yours.

So to you, the disease, illness, affliction that shakes my life, I say: You may have made me, but you won’t break me.

Yours sincerely,
The Unsilenced Caregiving Minority

 

Caregiving and the holidays: from stress to success

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At a caregiver-only support group meeting I attended today, the terrific social worker, Susan Weisberg, LCSW, distributed this useful article from Family Caregiver Alliance (caregiver.org) on surviving the holidays with low stress.

Robin

www.caregiver.org/caregiving-and-holidays-stress-success

Caregiving and the holidays: from stress to success!

For many caregivers the holiday season gives rise to stress, frustration and anger, instead of peace and good will.

Caregivers may feel resentful towards other family members who they feel have not offered enough assistance. Managing care for someone who has a cognitive impairment may leave caregivers feeling that they will not be able to participate as fully as they would like in family gatherings. Already feeling overwhelmed with caregiving tasks, stressed-out caregivers may view traditional holiday preparations as more of a drain of precious energy than a joy.

Following are some suggestions that may help make the holidays more enjoyable for you and your loved ones. Keep in mind that the holidays can, in fact, provide unique opportunities to seek better communication, connection and support from family and friends.

An opportunity for communication

It’s hard to know how much to communicate about a loved one’s decline in cognitive functioning and personal care needs. Whom do you tell? How much do you tell?

Although it is understandable to have reservations about discussing a loved one’s impairments, honest communication about the realities of the caregiving situation offers others the opportunity to respond with assistance. Sharing the truths of your situation may help reduce some of the feelings of isolation and lack of appreciation common in caregivers.

Holiday greetings and a brief note

Some caregivers have had success in writing a brief note describing the person’s condition and enclosing it in a holiday greeting card. This can be a nonthreatening way to inform distant or uninvolved relatives about the realities of the caregiving situation. If written in a tone that’s not accusatory or guilt-inducing, family members may be more forthcoming with assistance or, at least, have a better understanding of the effort you are putting into providing care.

Let sleeping dogs lie?

It is common for caregivers to be disappointed with family members who they feel are not “pulling their weight” in caregiving responsibilities. If this holds true for you, and your goal is to enjoy the holidays, you must decide how much and when to communicate this disappointment. Consider clearing the air before the holidays or perhaps resolve within yourself to put those feelings on hold, with the intention to discuss the matter after the holiday season passes. In the meantime, enjoy the holiday!

Be clear about your energy level

Let family members know that your caregiving duties are keeping you very busy and that you only have so much energy for holiday preparation and hosting duties.

Accept the need to adapt

Caregivers often have to adapt their traditional role or experience of the holidays. This may mean allowing another family member to host more time-intensive festivities. You may need to modify the amount of time away from home to match the comfort level of your impaired loved one. You may also have to choose which events to attend based on which would be the simplest, least exhausting and most enjoyable for the person for whom you provide care—and for you.

The visit room

Don’t expect the person with cognitive impairment to be able to adapt to all situations; you may need to adapt the environment to their needs. See if you can arrange to have another room in the house designated as a quiet place for the impaired person. Many people with dementia find multiple conversations and background noise disturbing. To avoid this anxiety, the person may benefit from time in a quieter room with less stimulus where family members could take turns visiting with them.

Share your wish list

  • Respite: some caregivers ask for time off from caregiving duties as a gift for the holidays. This could mean another family member gives you a break. Sometimes asking for a Saturday off “in the next three months” is more accepted, as family members can then schedule it into their calendars. If this is not possible, perhaps they would consider paying for a home care worker or a stay at a respite facility. Your FCA Family Consultant can help you locate these resources in your area.
  • Home repairs: Do light bulbs need changing, or grab bars need installation? That maddening pile of junk in the garage needs to go to the dump? Tasks such as these may be the perfect way for a family member to help out if providing personal care is too uncomfortable for them.
  • Care for you! How about a gift certificate for a massage, facial or manicure? How about an opportunity to spend the day fishing or a walk in the outdoors?
  • Book your homecare worker early! Speak with your home care worker or home care agency early about your holiday plans!

Schedule one-on-one time

While caregiving, it is easy to get caught up in all the tasks of personal care and homemaking chores. Make a point of setting some time aside this holiday season to enjoy the person you care for in a relaxed, one-on-one context. The best activities are those which take advantage of long-term memory—usually less impaired in people with dementia. Try looking through family photo albums or unpacking holiday decorations, which may stimulate memories.

Reflect on the rewards

Reflecting on the rewards of caregiving can help maintain your self-esteem. It may feel very rewarding to know that you are fulfilling a vow or promise you have made to the person for whom you provide care. Your caregiving may be an expression of living up to your personal ideals or religious beliefs. You may also be experiencing a great deal of growth as you learn new skills and meet challenges in ways you never imagined possible.

A little thank you goes a long way

After the holidays, write a thank you note to family members or friends who spent time with your loved one. Emphasize the positive impact their visit or brief time spent with your loved one had on them. This may reinforce positive feelings from their visit and diminish any discomfort they experienced. They may then be more encouraged to visit again or be more supportive of your efforts.